Learning to be buddies

Surviving difficult behaviour

2011-05-17T15:20:00.000+10:00

Since bringing up the issue of dealing with aggressive behaviour I have heard a range of comments from parents, teachers and teachers in training.

Some of the concerns for beginning teachers revolved around the fear of whether they could deal with difficult behaviour in the classroom. Both parents and teachers have asked the question, “How can I make sure I support the child displaying the aggressive behaviour whilst still protecting the other children around them?” Other concerns revolve around the issue of the stress and potential harm to themselves.

The challenge of dealing with ongoing challenging behaviour

If we are not careful, the challenge of dealing with ongoing aggressive or difficult behaviour can affect our own mental health. Parents and teachers can become anxious, stressed, tired or even “burnt-out”.

The Therapeutic Teacher

Abrams (2005) wrote an article called Becoming a Therapeutic Teacher for Students with Emotional and Behavioural Disorders. While he is talking about teachers, it is possible that the ideas expressed in this article could be helpful for parents as well.

Abrams discusses research and principles of working with children who have aggressive or challenging behaviour with the aim of balancing the need to manage teacher stress whilst providing adequate support for the students. He argues that the two go hand in hand.

If we can set up an environment that helps prevent the escalation of behaviour, then both the students and the teachers are likely to benefit.

Empathy

One of the key characteristics of a therapeutic teacher is the ability to see beyond the behaviour and focus on the whole child. That is, instead of punishing a child for outbursts or tantrums, the teacher first thinks about the triggers, or the emotion behind the outbursts.

This approach helps us recognise the function of the behaviour (as discussed in the last post), and thus helps us to change or reduce the incidences of the behaviour. It helps us be proactive instead of reactive. Which, in the end, takes much less emotional energy and is much more rewarding – for both the adult and the child.

It also helps us listen and respect children more. It helps us see the child as someone with interests, strengths, needs, abilities… not just an “aggressive child”. As Abrams says, “Therapeutic teachers show respect for each student’s dignity, even when the student engages in antisocial behaviour.” p41

Consistency and routine

One of the most important tools in dealing with behaviour which benefits both adult and child is consistency and routine. Again, this is about preventing difficult behaviour as much as dealing with difficult incidents when they occur.

This can be something as simple as designing a few positive rules, rewards and consequences that the students have had a hand in designing. Reinforcing these calmly, consistently, positively and supportively can have a significant influence on the interactions within a classroom or home.

Routines, or a set sequence of activities throughout the day, can also be very helpful. Children with anxiety issues, difficulty adjusting to change or new experiences will benefit from set routines. These can be represented in a written or pictorial routine displayed and with which the child can interact. For example, putting a sticker next to a completed task. Or removing a picture from a sequence of pictures stuck on a surface using Velcro. This helps them feel in control, and makes the environment predictable and safe – and can be a good basis for rewards.

Organisation and confidence

But, importantly, the success of our strategies not only relies on our respect for our students or an understanding of their needs. It also requires organisation, confidence and a willingness to continually learn.

This means that if something doesn’t work, we don’t feel guilty or beat ourselves up. It is about approaching each day as a fresh start, for both ourselves and our children, and learning from past experiences.

Being realistic – yet hopeful

One of the things that does seem contradictory in Abram’s discussion is his assertion that we need to be realistic while remaining hopeful and optimistic. As discussed in a previous post, it is often a difficult thing to find the balance between high expectations and what we can realistically expect. This is especially difficult when it comes to behaviour.

But if we take one step at a time, one moment at a time, we are more likely to be able to celebrate the small steps without being overwhelmed by the difficult times.

Managing stress

I particularly enjoyed Abrams’ recommendations about stress management. Perhaps we should make it a checklist:

Am I realistic about what behaviour I might encounter tomorrow?
Am I approaching tomorrow with a positive attitude?
Have I set priorities and scheduled my time?
Am I eating well?
Am I exercising?
Am I having enough rest?
Do I have a hobby?
Am I flexible and adaptable?
Am I keeping my sense of humour?
Am I giving myself permission to feel tired/angry/sad/other?
Have I debriefed with a friend/colleague/partner/parent?
Have I come up with ways to deal with the cause of my emotion?
Am I recognising and accepting things I can’t change?
Do I realise that I am not superwoman/superman?

I don’t think I could check all the boxes, but it does help a little to know what to aim for…

Reference:

Abrams, B.J. (2005). Becoming a Therapeutic Teacher for Students with Emotional and Behavioural Disorders. Teaching Exceptional Children, 38(2), p40.

Dealing with the anxiety of going back to school

2011-03-17T13:58:00.000+11:00

One of the issues that causes anxiety for children with a wide range of behavioural, emotional or developmental difficulties as they return to school after a break include the difficulty of predicting what might happen next. Due to executive functioning issues, many of these children find it hard to retrieve or apply any previous experiences they may have had if those experiences are not exactly the same (same room, same teacher, same peers etc) or if there has been a break in their routine (eg holidays). It is kind of like waking up to a new environment every day.

The Comfort of Routine

I don't know about you, but I am a bit of a "home-body". I like going on holidays, but by the time the second week rolls around I start missing familiar things. My bed. My kitchen. My books. My routines.

Imagine if you could never go home. I know that would cause me great anxiety. There is comfort in routines. It is the comfort of knowing what to expect. Constantly dealing with "surprises" is emotionally wearing. And this is multiply true for children who struggle with flexible thinking. For these children, and children who struggle with self-regulation, the lack of predictability can lead to frustration and anxiety as they struggle to identify and follow expectations (Swanson, 2005).

Managing Anxiety with Routines and Organisational Strategies

Lytle and Todd (2009) highlight how routines are an important factor in helping to manage the stress of children with Autism Spectrum Disorder. Anderson et al. (2008) go further and discuss how organisation techniques taught to older students can have an impact on the academic performance of students with behaviour disorders. Swanson (2005) provides a comprehensive list of ways that we can help children recognise routines and feel in control by being organised. Below are the key strategies we could use, both at home and at school:

Organise the environment: Make sure you remove clutter, have clear boundaries for where you do certain activities, and have set spaces where equipment is kept.
Use visual or written schedules: Calendars help children predict what is coming up, especially if you cross off each day as it passes. Visual schedules for the day's routine, as well as a schedule for an activity, will help children be more confident in what they need to do. When it is holidays, count down on the calendar to when school starts again. Keep as much of the "school routine" at home as possible, or (as one parent suggested) start the routine a couple of weeks before school goes back.
Clearly identify start and finish points: Use clocks, sounds, verbal and visual warnings to help children count up to starting points and count down to finishing. This applies to individual activities, a session or a new school term.
Be organised: Use containers, checklists, flow-charts to help children be organised and know what is coming up next.
Have rules: Display rules that clearly set out your expectations - but don't have too many. Avoid "don't" rules, but use statements that tell children what they should be doing.
Use photos: Prepare children for important people they will meet or interact with through photos. You might also use video of new settings, people and/or activities.

Hopefully some of these techniques will help your child deal with the anxiety of going to school. The techniques will be most effective when they are used at home and at school, so it is important that parents and teachers share what they are doing with each other.

Next time I will talk about using relaxation techniques....

...

References

Anderson, D.H., Munk, J.H., Young, K.R., Conley, L., Caldarell, P. (2008). Teaching Organisational Skills to Promote Academic Achievement in Behaviourally Challenged Students. Teaching Exceptional Children, 40(4), p6.

Lytle, R & Todd, T. (2009). Stress and the Student with Autism Spectrum Disorders: Strategies for Stress reduction and Enhanced Learning. Teaching Exceptional Children, 41(4), p36.

Swanson, T.C. (2005). 20 Ways to Provide Structure for Children with Learning and Behaviour Problems. Intervention in School and Clinic, 40(3), p182.

Parent stories: Different types of anxiety

2011-03-14T15:46:00.012+11:00

So... I found after my last post that comments on my Facebook page indicate that if your child struggles to re-adjust to school after the holidays, you are not alone. One parent said that they had to help the children re-adjust every school holidays - not just after the long summer break.

There were also some strategies suggested by families to help their children adjust. They included:

Playing schools during the school holidays.
Starting the school routine a few weeks prior to school going back.
Relaxation therapy prior to and at school - such as deep pressure therapy.

Different things will work for different children/youth. But it helps to understand the type of anxiety your child is feeling.

Environmental Anxiety

This is the label I have given to behaviour that comes out due to anxiety in a specific event. For example, something may happen in the classroom, at school or at home that may cause an immediate reaction. Parents of children with Autism Spectrum Disorders often talk about a child screaming or shutting down, chewing clothing, biting others, running away and/or hiding when something occurs to distress them.

Anxiety due to an ongoing activity or trigger

Other behaviours show that the anxiety is due to a repeated event. These behaviours may include moodiness, nightmares, wetting the bed, the need to cling to someone and so on. This usually indicates that there is an ongoing activity that is causing the child anxiety.

Anxiety Disorders

If a child is showing signs of constant, ongoing anxiety over a period of 6 months or more, it may be time to consult with a psychologist. Kanakos (2011) provides a brief overview of different types of anxiety disorders. These will need to be dealt with differently than the more transient anxieties mentioned above.

Ask Amanda - Dealing with anxiety

2011-03-09T12:17:00.005+11:00

Q:
I wanted to put a vote in for the "Ask Amanda" days - this occurred to me last night as I tossed and turned trying to work out how to help my daughter deal with anxiety. She has just started Year 1 and has had a number of wee accidents at school (none over the break) and she wakes up every night and insists on sleeping in our bed - both these behaviours have started with the new term hence I think they may be about her anxiety...would love any advice/tips or simply stories of similar experience...

A:

Imagine this...

You have just been invited to a new friend's home for dinner. It will be the first time you have been there.

Getting there

First, you double check that you have the address right and you are given a description of the place. You might even get someone to drive you past just so you are confident you can get there.

Then you consult Google maps and get a set of written directions, a map and a street view of the place. You are getting even more confident.

On the night you have butterflies in your tummy, but that is expected. Another friend who knows the way offers to come with you. So now you barely worry at all.

With a little anxiety, you get in the car. But because you have someone you trust with you, and you have a written road map, and pictures representing the place, you manage to get there and enjoy the evening - and get home!

A break

But then you don't get invited there for a while. Until one day, a few weeks down the track, you get invited again. Because you have been there before, you don't really worry. You just set off....

Getting there again

But last time you were driving at dusk, so now all the landmarks look different.

And while you thought you could remember all the turns, it turns out that you don't... and you forgot to bring the maps and instructions. And this time you are giving a lift to someone who "sort of" knows the way, but you don't know them well enough to trust them.

You do get there. But by the time you get there you are so anxious it is hard to relax and enjoy the company - all you can think of is having to drive home again.

But you don't really want to tell anyone because you feel like you should know what to do because you know you have done it before.

The analogy

No, this isn't just a random story :). It is an analogy of how a child may feel as they transition back to school after the school holidays...

"Landmarks" change, "supports" are different or fewer. And the expectations are different. For children with developmental disabilities, add to this a difficulty with problem-solving and analysing your environment, and it is no wonder that the transition back to school after the holidays is a very anxious time.

So what can we do?

I will take a little time this month to talk about what can be done. But if anyone reading this blog has a story or some advice to offer, please post a comment here.

****

Learn2bebuddies in 2011

2011-02-18T11:42:00.005+11:00

I know it is a bit late to be talking about New Years, but for me it feels like the year has only just begun as I wind down from wedding plans, the wedding and honeymoon. I don't know what it has brought for you, but for me 2011 has seen me gain a husband, a new extended family and a new home. All this has meant that Learn to be Buddies has been very quiet for a while.

But now it is time to get back into things... so I thought I would share a few things that will be happening this year.

Autism Awareness Month

Hopefully you will all be aware of Autism Awareness Month, which happens in April. Last year I interviewed a series of parents, who told their children's stories here to help build awareness. I also wrote a series of posts on Autism. You can browse last year's posts on this link. I hope to do something similar this year, so sign up to our newsletter, "like" our Facebook Fanpage or follow this blog if you want to be involved.

Learn to be Buddies will also be a sponsor of Autism Rainbow Day on the 1st of April. To find out about what happened on Rainbow Day last year, visit the Rainbowland Autism Services website. You also can follow what is happening on the day through Facebook.

Workshops and conferences

Last year we began running workshops for parents and teachers, as well as activity days and book readings for schools and preschools. The primary theme for these workshops was bullying. You can find out more, and purchase notes from these workshops, on our website.

A few bookings have been made for 2011, but there are available days if you think you would like for me to run a workshop for you or your school. Fill in our inquiry form with an expression of interest, or contact us via email.

Blogging

I will get back into writing blogs about behavioural issues and practical strategies in March. While many of the behaviours addressed will be relevant to children with Autism, the posts will be relevant to parents and teachers of children with other diagnoses as well. The posts may also help parents/teachers of children with no diagnoses as they support their children in the challenges they face in the classroom and in social interaction.

However, I want to make sure that I am writing on topics that my readers are interested in or need information about. So is there anything that you are struggling with at the moment? Or a topic you want to know more about? Please ask a question or suggest a topic here or privately through our enquiry form.

Just note that I am not the final authority on Autism or behavioural issues, nor am I a trained medical practitioner. I am a special education teacher and researcher. I will help you find reliable information. however, any information I provide here should not replace consultation or therapy with relevant, trained professionals.

Learn to be Buddies Resources

We will be getting back to developing more Learn to be Buddies resources this year. We were not able to publish Why Don't You Share? last year as planned, so this is the first goal for 2011. We will also be developing a new series of DVDs, resources, games and a book based on a story addressing the issue of following instructions.

We will also get back into publishing further information sheets. These will be made available in our online store, or for free on our website as we find sponsors.

Newsletters

We will begin getting the monthly Learn to be Buddies newsletters out again beginning in March. These will keep you up to date with events, information, blog themes, products and competitions to win our resources. You can subscribe to our newsletter on our website.

I am looking forward to getting back into this important work again....

Helping Children Problem-solve

2011-01-19T08:48:00.002+11:00

This is a frequently visited post from July 2009 focusing on issues to do with resilience. New posts will return after my wedding in February....

An important factor in the ability to “bounce back” in difficult circumstances is the ability to use effective problem-solving strategies. There are many factors that can effect how a child approaches a problem.

The cognitive problem-solving process

Problem-solving happens in our heads. We either consciously or unconsciously work through the issue. Some of us do it very rapidly, others take longer. The bigger the problem, or the bigger the problem seems, the longer it may take.

However, successful problem-solving usually involves self-talk. And it usually goes something like this:
1. Whoa! I’m feeling really angry/upset/frustrated/etc!
2. I better take a deep breath and relax!
3. I am angry/upset/frustrated/etc because….
4. But I am good at… or I think I may need some help with …
5. What I could do is…, but if I do that … will happen. Can I live with that?
6. Yep, I can live with that. Here goes…
7. Well, that didn’t work…. but that worked well… I might do …. next time
8. But I did a good job just having a go!

An unsuccessful problem-solving event may go something like this:
1. Aaaaaaaaaaaaaaaaaaaaaaaaaaaah!

Or:
1. I’m feeling really angry/upset/frustrated/etc!
2. I better take a deep breath and relax!
3. I am angry/upset/frustrated/etc because….
4. But I am no good at anything. I need help. I can’t do anything …

Skills and strategies to help with problem-solving

Step One: Identifying your emotions
When a child is on the edge of a melt-down or explosion it is not a time to be trying to discuss what is happening.

Anxiety or any other strong emotion can interfere with the cognitive processes that are involved in the problem-solving. Children may not be calm enough to find the words they need. Or they may not be able identify or express with words exactly how they are feeling. Or they may feel that words are inadequate.

One strategy that is used is a feeling’s thermometer. There are many versions out there, but follow these links to find a few I like:
http://www.cognitivetherapyforkids.com/Resources/thermometer.pdf
http://www.embracethefuture.org.au/kids/index.htm?feelings2.asp
http://www.eshwinning.durham.sch.uk/ecm.htm
http://www.smelena.com/article_emotion_management.php

Or find Paul Stallard’s book, Think Good Feel Good. Chapter 10 has a great thermometer.

But I would prefer to use one that has some strategies for the child. This means it is not just about identifying emotions, but about managing them as well. This is my version:

Step two: Controlling your emotions
I talked about the Stop, Think, Do program by Lindy Petersen in a previous post. This can be a very effective tool in helping children relax and more effectively work through the problem-solving process.

More coming soon….

References and resources to follow up:

Alabama Federation Council for Exceptional Children (nd). Tips for Teachers: Managing Students' Behaviours: Fostering Independent Learners through Self-management Strategies. Online at:
http://www.afcec.org/tipsforteachers/tips_c5.html

Barrett, P. (2005). Friends for life. Queensland: Australian Academic Press
Find out more at http://www.kidsmatter.edu.au/programs-guide/friends

Stallard, P. (2002). Think Good- Feel Good. John Wiley & Sons: Australia

An old favourite...

2011-01-11T18:30:00.002+11:00

This post is a re-post from October. It is one of the most popular posts at the moment on my blog. The reason I am re-posting is because I have no time to write new ones as I prepare for my upcoming wedding.

If you have read it before, I hope you find something new. If you haven't read it before, I hope it has something for you....

Functional Reading

When supporting children who have literacy difficulties, especially if they are older and moving into high school, we should challenge ourselves to think differently about teaching literacy. Instead of focusing primarily on teaching literacy for literacy's sake, we should focus on teaching literacy skills that will help the child or youth learn and succeed in any literacy-based task that they come across - in the classroom and outside the classroom.

This is called functional literacy (Mercer & Mercer, 2001).

Why we read

Reading is usually done for a purpose. You may read to entertain yourself, to find out information or to find out how to make something. Knowing this purpose is an important first step in reading. This means that the emotional experience of reading is usually defined by the reader's ability to achieve that purpose.

So if you sit down in a restaurant and pick up the menu for the purpose of ordering your meal, and you find you can't read it due to unfamiliar words or poor presentation, you are likely to find it a very frustrating experience - and one which you will not be in a hurry to repeat.

Choosing and adapting texts

To ensure that we don't put children or youth into the position of feeling this frustration, and doing everything they can to avoid the reading experience, we need to make sure they know why they are reading and that they can achieve this purpose. As Dyck and Pemberton (2002) suggest, when giving a student a text to read - whether it is a novel, a text book or anything else they will need to read on their own in order to succeed with a task - the first thing we should ask ourselves is whether the student can read the text with enough speed and understanding to use it. We should be aiming to ensure that they have an equal opportunity to achieve in the task they have been given.

To get a sense of whether the student will be able to read the text, you could do one of two things:

Circle every word you think they may find difficult. If this indicates that they cannot read the majority of the text without your help, then you need to adapt the text.
Get them to read a small section of the text. Again, if this indicates that they cannot read the majority of the text without your help, then you need to adapt the text.

Ways we can adapt any tasks involving reading and writing

Dyck and Pemberton (2002) discuss a range of ways we can adapt literacy tasks. These are discussed below:

Using alternative texts: Support groups such as SPELD NSW can help provide information and catalogues of books that are described as "high interest, low ability." These books are written with simpler language, and use age appropriate images and content especially for older primary school students.
By-passing reading: In some cases it is more important for students to be able to learn content and display their knowledge than struggling to read and/or write. For this reason, students with significant literacy difficulties are eligible for readers and scribes in formal exam situations. By-passing reading in class can be done through buddy reading, using audio books and text to speech technology which is becoming more and more freely available in schools.
Decreasing reading: In other cases students can achieve the purpose of a task through the reduction of reading/writing demands. For example, copying notes off the board can be one of the most demoralising and meaningless experiences for a student struggling with literacy. Instead, the student could have a fill-in-the-blank worksheet which helps them become familiar with key terms. Using mind maps, cartoon strips and a whole range of other advanced organisers can also be of great help for a student to learn rather than struggle through trying to read.
Supporting reading: The use of glossaries, personal dictionaries, notes in margins, colour-coding, images, diagrams and so on are great ways to help struggling readers focus on the key points of a text and achieve the purpose of an activity rather than being bogged down in decoding words on a page.
Organise reading: Organising the information on the page differently can help students who are struggling to read. For example, using dot points instead of lengthy paragraphs. Enlarging the font, using numbering or a flow chart to clarify a sequence, and adding any images will help the student again focus on the content of the text.
Guided reading: Reading a text together is a good way of helping a student focus on meaning. This can be done at home, or through small group reading in class. It could also involve choral reading, where everyone in a class reads along with the teacher.

References:

Dyck, N. & Pemberton, J.B. (2002). A model for making decisions about text adaptations. Intervention in School and Clinic, 38(1), pp28-35.

Mercer, C.D., Mercer, A.R. (2001). Teaching Students with Learning Problems. Ohio: Prentice Hall.

Enjoying Christmas... even with food allergies

2010-11-29T11:31:00.001+11:00

One of the memories associated with the excitement of Christmas in my childhood was the food. Special food that we wouldn't get all year round.

Savoury snacks like frankfurts dipped in tomato sauce. A whole bunch of meats and salads, or a baked dinner. Lollies. Soft drink. Cakes. Chocolates. All varieties of deserts.

So when I was diagnosed with a chronic health condition that meant refined sugar, yeast, dairy, and more recently gluten needed to be eliminated from my diet. Christmas was somehow not quite the same. Being excluded from sharing the communal meal, or enjoying the annual indulgence of certain treats, can be a very isolating experience. And if special dietary needs are not considered, it can also make you feel a little ignored...

But, thankfully, over the years my family have adjusted. My mother and I have also discovered different recipes... like the sugar-free fruit cake, sugar-free carob and most recently I have been able to adapt a recipe for pumpkin pie, using the juice from boiled dates to sweeten it.

Children with special needs and Christmas treats...

Children with special needs may have special dietary needs, physical issues or sensory sensitivities that may interfere with there ability to join in the Christmas feasting. If we want our Christmas Day to be truly inclusive, we need to make sure we find out if this is the case and what we can do about it.

Special dietary needs

Some children with Autism or Aspergers benefit from or require a gluten-free diet due to their digestive tract issues. The wrong foods can influence mood as well as cause stomach aches, constipation or diarrhoea.

The behaviour of some children with ADHD can be influenced by the amount of sugar and/or preservatives that they consume.

These are only some of the more common issues children with diverse needs and their families might face at the Christmas meal. Some things we can do is ensure that we have a number of gluten, dairy and sugar-free options that look and taste appetising available on Christmas day.

This, importantly, should include sugar-free and additive-free drinks. Carefully reading labels on fruit juice bottles is important as many brands add sugar and preservatives. Another treat is to freeze fruit juice as ice blocks. I found Nudie Crushies best for this as they are thicker and more like the smooth consistency of ice cream when frozen.

If you need recipes, the Gluten-free Goddess has some great suggestions.

My most favourite, well-stained cook book is called "Cooking Without" by Babara Cousins.

Alternately, I have found some good snacks in the Naytura food isle in Woolworths... Orgran being a great brand for gluten-free products.

Physical considerations

For some children with disabilities there are other physical factors that you will need to consider.

First, some children may not be able to successfully manipulate a knife and fork due to fine motor difficulties. One of the ways to deal with this is to have a range of easily manipulated, finger-foods available.

Other children may have difficulties with chewing or swallowing, and so having soft foods available will also be helpful.

Crushed rice+egg cups filled with salsa:
Gluten, sugar, dairy, preservative free, fun finger-food
You can fill the rice cups with anything you (or your child) like

Sensory sensitivities and preferences

We also need to take into consideration the sensory sensitivities and set preferences of children with diverse needs.

For some children, certain textures, aromas or colours will trigger a gag reflex or a meltdown.

Other children will have very specific food preferences... and will struggle to eat anything outside these preferences.

It is important not to see this as a behavioural issue. That is, we need to be careful not to think of a child with Autism who is having a melt-down because something green was put on their plate as being "naughty". Understand their specific needs and "go with the flow"...

This is just scratching the surface, I know.... so if anyone else has advice, or recipe suggestions, please share...

.

As we head into Christmas

2010-11-24T11:04:00.004+11:00

The count-down to Christmas has begun.
All the lights are starting to be hung.
Everywhere gatherings are beginning.
So here's some things to get you thinking...

Present-giving is such a huge part of Christmas. I remember vividly the excitement that caused sleeplessness on Christmas Eve - then the joy of finding the present at the end of the bed in the morning... Much torn wrapping later, and the day was full of new toys, food and fun.

But present-giving can also cause tension. Trying to please everyone, trying to display pleasure at inappropriate gifts, arguments over money spent, offence at gifts returned.... we all want to avoid these things.

Gift-giving and children with disabilties

I recently listened to parents of children with disabilities discuss the difficulties of presents at Christmas-time. I thought it would be good to use this blog to help build awareness of the issues that we need to consider when giving gifts to children who have special needs.

Some things you need to consider:

Narrow interests: One thing it is important to realise is that some children with disabilities have quite narrow interests. For example, a child with autism may only use items that have Thomas the Tank engine on them.

Developmental appropriateness: You need to consider the developmental appropriateness of a toy - not just its age appropriateness. For example, some children who have vision impairments use their sense of taste to continue exploring their environment long after their peers have stopped mouthing toys. This means that toys with small detachable parts that might be age appropriate will not be developmentally appropriate for the child as they could be a choking hazard. Other aspects that need to be considered are the child's intellectual, gross motor and fine motor skills. Children with disabilities such as Down Syndrome or Autism may find it more difficult to hold pencils, pick up small items and play with things that involve threading, constructing and significant muscle control in the fingers. Others may find it difficult to balance and use the gross motor skills involved in riding bikes or climbing. And others may find the cognitive challenge of some games such as puzzles, board games, card games and craft activities, beyond their cognitive ability.

Sensory sensitivities: Some children with disabilities are very sensitive to certain textures, sounds and even colours. Toys that do not align with their sensitivities will not be used, and may even cause them some distress.

So how can you make sure you purchase an appropriate gift?

The easiest way is to ask parents. They will be able to tell you about the child's abilities, interests and favourite toys. And don't be offended if they give you a list of specific things or places to shop for their children.

Here are two sites that were recommended by parents:

http://www.specialneedstoys.com.au/shop/

This Australian site provides a range of toys suitable for children with Autism Spectrum Disorders, Communiation and Sensory Processing Disorders, ADHD, Physical Disabilities and Cognitive and Learning Delays. They have toys priced from under $5 to over $100.

The toys include a whole range of things, from puzzles to computer-based games.

http://www.amazon.com

Another parent recommended this Amazon search entitled "Bestsellers in special needs multi-sensory toys."

Spectronicsinoz also has a range of games, though they are more expensive and generally educational. Here are some examples of their games:

Spot on Games
Card Games
Switch-friendly computer games for children with physical disabilities
More computer games called Play with me

All the best for your Christmas shopping :) ... and may your Christmas be full of fun.

Helping struggling readers experience success

2010-10-26T10:39:00.006+11:00

In the last post I mentioned an article by Dyck and Pemberton (2002) that provides a good discussion of the different ways you can adapt texts so that children with literacy difficulties can more successfully interact with them. In this post I want to outline some of those key strategies.

Functional Reading

This is called functional literacy (Mercer & Mercer, 2001).

Why we read

Circle every word you think they may find difficult. If this indicates that they cannot read the majority of the text without your help, then you need to adapt the text.
Get them to read a small section of the text. Again, if this indicates that they cannot read the majority of the text without your help, then you need to adapt the text.

Ways we can adapt any tasks involving reading and writing

Dyck and Pemberton (2002) discuss a range of ways we can adapt literacy tasks. These are discussed below:

Using alternative texts: Support groups such as SPELD NSW can help provide information and catalogues of books that are described as "high interest, low ability." These books are written with simpler language, and use age appropriate images and content especially for older primary school students.
By-passing reading: In some cases it is more important for students to be able to learn content and display their knowledge than struggling to read and/or write. For this reason, students with significant literacy difficulties are eligible for readers and scribes in formal exam situations. By-passing reading in class can be done through buddy reading, using audio books and text to speech technology which is becoming more and more freely available in schools.
Decreasing reading: In other cases students can achieve the purpose of a task through the reduction of reading/writing demands. For example, copying notes off the board can be one of the most demoralising and meaningless experiences for a student struggling with literacy. Instead, the student could have a fill-in-the-blank worksheet which helps them become familiar with key terms. Using mind maps, cartoon strips and a whole range of other advanced organisers can also be of great help for a student to learn rather than struggle through trying to read.
Supporting reading: The use of glossaries, personal dictionaries, notes in margins, colour-coding, images, diagrams and so on are great ways to help struggling readers focus on the key points of a text and achieve the purpose of an activity rather than being bogged down in decoding words on a page.
Organise reading: Organising the information on the page differently can help students who are struggling to read. For example, using dot points instead of lengthy paragraphs. Enlarging the font, using numbering or a flow chart to clarify a sequence, and adding any images will help the student again focus on the content of the text.
Guided reading: Reading a text together is a good way of helping a student focus on meaning. This can be done at home, or through small group reading in class. It could also involve choral reading, where everyone in a class reads along with the teacher.

References:

Dyck, N. & Pemberton, J.B. (2002). A model for making decisions about text adaptations. Intervention in School and Clinic, 38(1), pp28-35.

Mercer, C.D., Mercer, A.R. (2001). Teaching Students with Learning Problems. Ohio: Prentice Hall.

Addressing the emotional scars left by reading failure

2010-10-19T11:31:00.009+11:00

So how can we address "the emotional scars of frustration, shame and depression that can result from a lack of identification and appropriate support for young people" (Long, MacBlain & MacBlain, 2007, p125)?

Long et al discuss a case study where a secondary student (Matthew) with long-standing literacy difficulties was supported, both academically and emotionally, in their academic context. Here are some of the strategies that worked for him:

1. Bypass strategies: Dyck and Pemberton (2002) provide a great discussion of key strategies that ensure a student can work towards the outcomes set in the curriculum without being disadvantaged by their difficulty with literacy. Some of these strategies include presenting information in different ways (flow charts, images, video) or using supports such as readers (text to speech technology, or a peer reader). I will discuss these further in a future post.

2. Empowerment strategies: Long et al. discuss the importance of helping Matthew identify his learning style. This turned out to be visual, which is common for students with learning disabilities such as dyslexia. The next step was teaching him to independently identify and use a range of strategies, such as graphic organisers, to assist in any literacy based task.

3. Staff training: Empathy from a teacher was identified as a key element of success in addressing the emotional scars of literacy difficulties. Teachers who understand the difficulties these students face, and who are flexible in their teaching approach because of this understanding, can have a significant influence in the healing process. When training staff, it is important that ALL staff be trained in understanding literacy difficulties and conditions such as dyslexia and dysgraphia, especially in a high school context. This means that the student feels supported across subjects and years, not just on one teacher's class.

4. A whole school approach: Again, for consistency of support, Long et al. identify the importance of a whole school policy when supporting children with significant literacy difficulties. They identified that the policy included specifications that:

The student not be asked to read aloud in class
The student not be required to complete dictation tasks
That to avoid copying copious notes off the board the student be expected only to copy a summary of key points or be provided with a handout in advance of the lesson.
The student use a personal dictionary in which to record subject-specific words, to be provided to him at the beginning of each topic.
That teachers increase the use of summaries, mind maps, diagrams and charts.
That teachers would, wherever possible, mark Matthew's work in his presence and emphasise learning rather than marks.
That each department would identify a "collective belief system regarding dyslexia and how each might support students... who were experiencing anxiety caused by failure."

5. Mentoring: Having a weekly, one-on-one session with a teacher mentor (not necessarily a specialist trained teacher) allowed Matthew to ask any questions he considered too embarrassing or humiliating to ask in the more public setting of the classroom. This mentor also helped him with organisation (eg. colour coding books and folders according to subjects) and time management.

6. Explicit instruction on study skills: This was made available to any student within the school.

7. Collaboration with parents: Matthew, his parents and the school worked together to set realistic goals, processes to achieve these goals and a rewards system for recognition of success. This allowed Matthew to feel successful as he made improvements, rather than always feeling like a failure because he wasn't "keeping up" or demonstrating the same skills as his peers.

References

Dyck, N. & Pemberton, J.B. (2002). A model for making decisions about text adaptations. Intervention in School and Clinic, 38(1), pp28-35.

Long, L., MacBlain, S. and MacBlain, M. (2007). Supporting Students with Dyslexia at the Secondary Level: An Emotional Model of Literacy. Journal of Adolescent & Adult Literacy, 51(2), pp. 124-134.

Literacy difficulties, self-esteem and behaviour

2010-10-11T21:41:00.017+11:00

Literacy difficulties can be devastating for a child's self-efficacy in the context of any activity relating to reading and writing. Because so much of our lives - study, work and general life activities - involve literacy, people who struggle in this area can be at great risk of issues such as anxiety, depression, anger and generally poor self-esteem (Ryan, 2004). This applies to children diagnosed with dyslexia, dysgraphia... or those with no diagnosis at all.

The Gap between Ability and Performance

"...students with dyslexia internalize feelings of failure as a result of their dyslexia and not as a result of their lack of effort or commitment." (Long, MacBlain & MacBlain, 2007 p181)

There is nothing more frustrating than knowing something and not being able to follow it through. This is why we value freedom so much... it means that we can fulfill our potential, that the effort we put into things leads to the results we expect.

If we want to run a marathon, and we train hard and have a good sense of our abilities as a marathon runner, then we will have reasonable expectations of ourselves. And so long as we don't get injured, we probably will live up to those expectations.

Frustration, anger and even depression can come out of repeatedly unmet expectations.

What Shapes our Expectations?

When thinking about literacy and learning, we need to think about expectations of families and teachers as well as the child themselves (Ryan, 2004). Expectations about a child's potential performance at school or in literacy tasks are shaped by many things.

A family's expectations of a child's literacy performance may come from their communication, story-telling and reasoning ability. For example, I worked with one family whose child would entertain them for hours with highly engaging, convoluted stories. The frustration for that family was that when the child was asked to write down their stories, they wrote very short passages of sometimes meaningless text.

A teacher's expectations may be shaped by what they see in class. For example, the child mentioned above was very entertaining and articulate in class. However, his lack of task completion was mainly put down to the fact that he was "the class clown" and was not motivated to concentrate on individual, written tasks.

The child's expectations were shaped by their experience. They knew there was a lot going on in their head... but they were not able to succeed when it came to written literacy tasks. This was starting to lead to thoughts that they were somehow "dumb" or "stupid" or at least very different to their peers (Lyons, 2005-2010).

The Danger of Unmet Expectations

If we look at Maslow's hierarchy of needs we recognise the significance of repeatedly unmet expectations.

Diagram Adapted from Gorman, 2010 Table 1

For a child who is unable to achieve self-esteem through recognition from teachers and/or parents, or through achievement in class, they will find it very difficult to progress to achieve their full potential. This can have a crippling effect on their life in the community and post-school. There is some evidence that literacy issues, unaddressed, can (in the worst case scenarios) even lead to such outcomes as unemployment, poverty, violence and/or imprisonment (Robinson & Dally, 2008).

Children whose literacy abilities do not match their learning abilities are also at risk of being trapped in what we call the failure cycle (Robinson & Dally, 2008). This means that as they experience progressively more failure, they are less and less likely to even make an attempt to achieve at school. This can lead to disruptive and avoidance behaviour, and possibly dropping out of school early.

Some Signs of the Emotional Impact of Literacy Difficulties

In my experience I have seen a range of behaviours that have primarily signalled a struggle with literacy. These included:

The Class Clown: Talking, making jokes and generally benign but disruptive behaviour in class that leads to lack of completion of tasks. Much of this behaviour can be either an avoidance or delay tactic and can signal anxiety.
The Refuser: Generally refusing to complete tasks, or using avoidance techniques such as trips to the toilet to get out of completing tasks. This can also escalate into "meltdowns" and more aggressive verbal or physical incidents if the child is pushed to complete the task.
The Delay Technician: This child was very skilled in delaying the task so long that adults or peers would complete the task for them. For example, they would uhm-ahh and repeatedly say "I can't do it" until the "helper" took pity on them (and anyone else waiting for them to finish so the group could move on to the next task) and told them what the word was.

These are only some of the behaviours that should ring warning bells for us when supporting children with literacy difficulties. It is important for us not to think of the child as lazy if they are not living up to their potential. We should first examine if it is signalling anxiety, depression, anger and poor self-esteem as a result of expectations that are unreachable due to their literacy difficulties (Ryan, 2004).

Wholistic Literacy Support... Addressing the Emotional Child

The upshot of this is that, with any literacy support program, we should be factoring in the emotional and motivational side of reading (Long, MacBlain & MacBlain, 2007). Just teaching a child phonics or how to use technology will not necessarily undo all the effects of repeated failure in the past. We need to address their need for self-esteem to ensure they can reach their personal potential.

References

Gorman, D. (2010) Maslow's hierarchy and social and emotional wellbeing. Aboriginal and Islander Health Worker Journal, 33(5), pp. 27-9. Retrieved from eprints.usq.edu.au/6830/4/Gorman_AIHWJ_V34N1_2010_AV.pdf

Long, L., MacBlain, S. and MacBlain, M. (2007). Supporting Students with Dyslexia at the Secondary Level: An Emotional Model of Literacy. Journal of Adolescent & Adult Literacy, 51(2), pp. 124-134.

Lyons, A. (2005-2010). Self-Esteem and Learning Difficulties. Retrieved 12/10/2010 from www.ldail.org/esteem.cfm

Robinson, G. and Dally, K. (2005). Understanding literacy and numeracy. In P. Foreman (Ed), Inclusion in Action, pp 246-301. Thomson Learning: Victoria.

Ryan, M. (2004). Social and Emotional Problems Related to Dyslexia. Retrieved 12/10/2010 from www.ldonline.org/article/Social_and_Emotional_Problems_Related_to_Dyslexia

Dyscalculia

2010-09-28T22:16:00.008+10:00

Every day we are faced with mathematical problems. We need to read clocks, estimate times and do some arithmetic to make sure we are not late to appointments. We need to measure ingredients and estimate sizes. We need to do quick mental arithmetic when shopping, and read charts to make sure we don't speed.

Dyscalculia is more than being a bit slow to pick up mathematical skills. Or being a bit slow with mental arithmetic because you haven't practiced enough, or have used a calculator too much.

Dyscalculia is a life-long learning disability that effects your ability to learn and develop mathematical skills, including those basic skills used in everyday life.

What are the signs?

Some of the signs of dyscalculia as listed by SPELD and Eberly College of Arts and Sciences, 2008 include:

Difficulty learning mathematical terms and concepts
Difficulty identifying numbers, signs and symbols
Difficulty with basic functions such as addition, subtraction, multiplication and division.
Difficulty remembering number facts, times tables and formulae. This can also translate into difficulties remembering scores in sport.
Difficulty writing down working or an answer to written and numerical maths problems, including reversals, difficulty lining up numbers in correct columns, confusion over directionality and an inability to translate thoughts into symbols.
Difficulty reading written Maths problems.
Difficulty with reading time and time management.

Why?

As for dysgraphia, dyscalculia is linked to processing difficulties. Visual processing difficulties lead to reversals and confusion over numbers and symbols. Language processing difficulties lead to struggles with the language associated with maths, which in turn effects the child's ability to learn the mathematical concepts. Sequencing difficulties effect the person's ability to follow through with the logical processes involved in Maths.

In the next posts we will look at some ways we can help children who have been diagnosed with dyscalculia and dysgraphia.

References

Eberly College of Arts and Sciences (2008). Dyscalculia. Retrieved 28/09 from www.as.wvu.edu/~scidis/dyscalcula.html

SPELD (2008). What is Dyscalculia. Retrieved 28/09 from www.dyslexia-speld.com/LearningDisabilities/WhatisDyscalculia/tabid/139/language/en-AU/Default.aspx

Ask Amanda: Dysgraphia and Dyscalculia

2010-09-16T14:02:00.010+10:00

Not too long ago a parent asked me to blog about Dysgraphia and Dyscalculia. They were wondering what these labels meant, and what could be done to help their child.

Dysgraphia and Dyscalculia can be diagnosed alongside Autism Spectrum Disorders and Attention Deficit Disorders. Dysgraphia and Dyscalculia are neurological disorders that effect the way people learn literacy and numeracy skills (NINDS, 2009; SPELD, 2008).

Dysgraphia

Dysgraphia is demonstrated in a person's significant difficulty with written expression - handwriting, spelling and structuring a piece of written work.

Children with dysgraphia generally have difficulty with processing and sequencing information (Eberly College of Arts and Sciences, 2008). They may also have auditory, language and visual processing difficulties as well.

Information processing difficulties mean that children find it difficult to transfer what they are thinking onto paper. This can be because they find it hard to store the information long enough in their working memory to go through the physical process of writing it letter-by-letter, word-by-word. So what is a complex, creative story in their head, may come out as a jumble of random words and/or sentences on paper.

Sequencing difficulties mean that they find it hard to use the conventions of writing, like spelling and grammar. Proficient writers are able to spell "automatically" as they remember patterns of letters and shapes of words, thus not having to really pay attention to each individual letter in a word. This frees up a lot of working memory so that they are able to write fluently and focus on making meaning rather than spelling. For children with sequencing difficulties, it means that they will struggle to make meaning because they have to focus to much on each letter.

The same goes for grammar. Proficient writers most of the time use grammatical patterns without having to actually think about it. But children with sequencing difficulties will struggle to put their ideas on paper as well as follow the conventions of writing.

For children with auditory processing difficulties, they will struggle to use sounds to help check spelling. For children with language processing difficulties, who may think in pictures or concepts rather than words, it will be very difficult to translate their ideas into writing. For children with visual processing difficulties, it would be very difficult for them to use visual cues such as the shape of letters and words.

A Sample

You can see a sample of writing from a child with dysgraphia at http://dyslexia.learninginfo.org/dysgraphia.htm

Next time... I will discuss Dyscalculia...

Links used in this blog post:

http://www.as.wvu.edu/~scidis/dysgraphia.html

http://www.dyslexia-speld.com/LearningDisabilities/WhatisDysgraphia/tabid/90/language/en-AU/Default.aspx

http://www.ninds.nih.gov/disorders/dysgraphia/dysgraphia.htm

http://dyslexia.learninginfo.org/dysgraphia.htm

The rage and recovery stages

2010-08-31T21:35:00.004+10:00

Following on from the previous post, the next two stages in the rage cycle include the rage stage, then the recovery stage (Myles & Southwick, 2005).

The Rage Stage

It is at this stage that you will see uncontrolled, explosive behaviour. It could be physical, such as hitting, kicking and self-injurious behaviour. It could be verbal, with screaming and yelling of abuse. It could also be withdrawal, where the child withdraws from contact and any interaction.

This is not the moment for trying to teach new skills or redirect the child.

What should you do?

Myles and Southwick (2005) suggest a range of things including:

Protect: The child, property and others around the child. This could include finding non-harmful ways for the child to release adrenaline such as those suggested in the previous post.
Plan: Have an "exit" strategy, one that allows the child to escape from the pressures of the situation without feeling humiliated or disempowered. Use this routinely, preferably having discussed it previously in a teachable moment. This should be your crisis management plan.
Prompt: With as few words as possible, and very circumspectly, prompt the child towards there safe space (as discussed in the previous post).
Prevent a power struggle: Don't argue or respond or try to negotiate. At this stage in the rage cycle the more you say, the more the behaviour is likely to escalate. In my experience, a simple and calmly repeated phrase can help diffuse a child's anger. This could be a simple prompt towards the child's safe space.
Timer: Having a timer that provides the child with a visual prompt as to when they should stop can help them find an end to the rage stage.

As Myles and Southwick (2005) state, it is important (and difficult!) to remember not to take the child's behaviour personally.

The Recovery Stage

As with all stages in the rage cycle, every child will act differently at the recovery stage. Some will be so exhausted that they will fall asleep. Others will use withdrawal into fantasy or denial to remove themselves from the incident. Others will be apologetic.

What should you do?

At this stage it is likely that both adult and child are feeling fragile and emotionally drained. It is important that the recovery stage is just that - used for recovery. This stage is also not the time to discuss the incident. Don't place any demands on yourself or the child until you are absolutely sure that the recovery stage is over.

You could:

Rest, and allow the child to sleep.
Redirect the child into their special area of interest.
Use relaxation techniques - for example: deep breathing, stretching, blowing bubbles.
Give the child space if they need it.
Use familiar structure and routine to help settle the child.

Once you have both recovered, then you will have teachable moments where you can plan, discuss and use tools like social stories to address the reason why the meltdown happened in the first place.

References

Myles, B.S. and J. Southwick (2005). Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns. Autism Asperger Publishing Company: Kansas

The Rumbling Stage

2010-08-30T19:32:00.005+10:00

When dealing with meltdowns, or rage, it is important to recognise when it is possible to negotiate, re-direct or deflect the child's emotion... and when it is time to "ride it out", letting the emotion take its course. If we can catch a child/youth before the emotion takes over their reasoning or thinking power, we are more likely to prevent or minimise the meltdown (Myles and Southwick, 2005).

The Rage Cycle

According to Myles and Southwick (2005) the rage cycle includes three main stages - the rumbling stage, the rage stage, and the recovery stage. They suggest that before and after these stages teachable moments occur. Once the rage cycle starts, the opportunity for the child to learn is gone.

At this stage it is about management and, where possible, prevention of escalation.

The Rumbling Stage

Parents have often expressed to me the fact that they can tell when a meltdown is coming on. The signs could be categorised into four different categories:

Physical signs, including fidgeting, tapping, restlessness, muscle tenseness, grimacing
Verbal signs, like name calling, threats, grunting, increasing or decreasing volume
Behavioural signs, like refusals, crying

What can we do in this stage?

Myles and Southwick (2005) identify a range of strategies that could be used in this stage. Some ideas include:

Provide a safe, cool down space: Help the child feel safe by moving to a space that is familiar and away from the triggers of their meltdown.
Provide a physical outlet: Give the child a way to get rid of the excess adrenaline that is flowing as a result of their emotion. This can be anything from squeezing a stress ball, to bouncing on a trampoline, to tearing up paper.
Remain calm and quiet: Don't try to reason with them, remain calm and close-by. Walk with them if necessary. For some children, touch can also be helpful.
Redirect: Using a child's interest it may be possible to redirect their attention and emotion. You might need to help the child re-evaluate their goals.
Use routine: Help the child get back to familiar and safe sequences of events.

But the most important thing to remember at this stage is that, as adults, it is important that we remain calm and flexible, adapting to the needs of the child as the child will not be able to be flexible once they have entered the rage cycle.

References

Myles, B.S. and J. Southwick (2005). Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns. Autism Asperger Publishing Company: Kansas

Why are they melting down?

2010-08-28T18:45:00.009+10:00

Meltdowns are a physical, adrenaline-led response to a range of different emotions and triggers (Lipsky, 2009). These can be anything from anxiety, anger, frustration to sensory overload. An important step in dealing with meltdowns is to understand the reason why they are occurring (Myles & Southwick, 2005).

Functional Behaviour Assessment

Part of Applied Behaviour Analysis is identifying the function of behaviour. In a previous post, four key functions of behaviour were highlighted - to avoid something, get something, sensory-based responses and pain attenuation.

Functional behaviour assessments are about recording observations and analysing them to identify why repeated difficult behaviour happens. You can find out more about this in this post or by reading this document from www.usu.edu.

An online tool

http://www2.monacoassociates.com/masontheweb/index.aspx

Parents, teachers and therapists can try this easy-to-complete online tool that can give a quick indication for the possible function of a child's behaviour. You fill out a series of questions online, then you get a table which indicates which of the key functions of behaviour are most likely to be behind your child's behaviour. Below is a sample of what you will see.

Printable Resources

If you prefer a more complex, thorough process (especially if you are a teacher) you might want to download the following forms from polyxo.com:

Behaviour Observation Forms
Functional Behaviour Assessment Forms

References:

Lipsky, D. and Richards, W. (2009). Managing Meltdowns: Using the SCARED Calming Technique with Children and Adults with Autism. Jessica Kingsley Publishers.

Myles, B.S. and J. Southwick (2005). Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns. Autism Asperger Publishing Company: Kansas

Ask Amanda: Managing Meltdowns

2010-08-11T21:15:00.003+10:00

At the Autism and Aspergers Support Group Inc Hawkesbury meet in July I was asked by a parent about how to manage meltdowns. There is not simple way to answer this question, though other parents did provide some suggestions. Some things that work for other parents and their children include:

Staying calm
Get down to your child's level and sit with them
Speak reassuringly, assuring them they are not "in trouble"
Hug them tightly or wrap them tightly in a blanket (for some children with Sensory Integration issues this can be comforting)

Since that time I have been reading some information on the topic. One book that I have found particularly useful is Managing Meltdowns: Using the SCARED Calming Technique with Children and Adults with Autism. It is written by Lipsky, who has been diagnosed with high functioning autism herself, and Richards.

SCARED stands for...

Safe - find an environment, or follow the child to an environment where they feel safe.

Calm - stay calm, speak calmly, talk in literal language.

Affirmation - show that you know what they are afraid of by putting it in words.

Routine - work with repetitive, routine behaviours that they may be using to help calm themselves (so long as it does not involve self-harm).

Empathy - show you are there to support and help.

Develop an intervention strategy - make a step-by-step, concrete plan for what to do if a meltdown happens again.

This month...

This month I plan to explore these six elements of responding to meltdowns in more depth.

Reference:

Lipsky, D. and Richards, W. (2009). Managing Meltdowns: Using the SCARED Calming Technique with Children and Adults with Autism. Jessica Kingsley Publishers.

Helping children stay on track

2010-07-31T20:30:00.010+10:00

How do we help children who are constantly going off task? How do we help children who don't think before they act?

Reducing distractions

One of the most important ways to help children with inhibitory control difficulties stay on task is to reduce the number of things going on in the child's environment.

- When learning: In the classroom there are many possible distractors. These can include things hung on walls, peers talking, movement around the room or outside a window. One key strategy is to have a seating arrangement that means the child is sitting away from windows, facing the front with no peers between them and the teacher and no distracting wall hangings within their direct line of site. Keep ambient noise low, paying attention to the noise coming from fans, heaters and other students.

Having clear, written rules that have been negotiated with your students will also be essential to maintain a distraction-free environment and help children with inhibitory control issues stay in their seat and on-task. You will need to have a display of these rules and frequently refer to them.

- When doing homework: It is important that a child with executive functioning difficulties not be expected to complete a task requiring concentration in a room that has many distractors. Many of these children benefit from a quiet, clear space away from TVs, toys, computers and other possible distractors.

Expect concentration on only one thing at a time

Use Pointers

Reading can be a very difficult task for children who have trouble with their "inhibitory control" because it can effect their concentration. They can lose track of where they are in the text, skipping words or even whole lines. They can be distracted by noises, and find it hard to pick up where they left off.

An effective tool is a pointer. This can be anything from a child's finger, to a laser pointer on the board, or a ruler under the line they are reading. Another tool is a little window cut out of a piece of card large enough for the child to only see one or two lines of the text at a time.

Using colour-coding can also be useful. You can highlight key words by writing or highlighting them in different colours. You can write/highlight the beginning of each paragraph, sentence or line in a different colour to help children keep track.

Break it down

Big chunks of information, or lots of steps in a task, will be hard for a child to remember if they are struggling to filter out distractions. To address this we should break tasks down so they can focus on one step at a time. The best way to do this is through checklists or graphic organisers (British Columbian Ministry of Education, 2010).

You can use visual checklists on Velcro strips where a child can remove a picture and put it in a "finished" box as each step is completed. Some places where you can get free visuals include www.visualaidsforlearning.com and www.do2learn.com

You can use a written checklists for children with good literacy skills, ensuring they can check each step once it has been completed.

It could also be beneficial to have relevant rewards for each step that has been completed. For example, a child might get 1 point each time they finish a step, and once they have gathered 10 points they are able to dip into a lucky dip of small items relevant to their interest. Other children will be motivated by merit certificates, and others by time doing a favourite activity.

Here are some charts you might be able to use:

Stop, think, do....

To help children who are struggling to think before they act the steps involved in the Stop, Think, Do program can be used. I have discussed this previously here and here.

In conclusion...

Here is a great checklist from the British Columbian Ministry of Education that can help teachers working with children who have ADHD: www.bced.gov.bc.ca/specialed/adhd/app4.htm The strategies in this document could be helpful for any child who has executive functioning difficulties.

References

British Columbian Ministry of Education (2010) Teaching Students with Attention-Deficit/Hyperactivity Disorder: Planning for Success at School. Retrieved 31st July, 2010 from www.bced.gov.bc.ca/specialed/adhd/plan.htm

Executive functioning and self-control

2010-07-29T14:00:00.006+10:00

The final element of executive functioning is "inhibition." This is the function that helps us control our responses to what we see, hear and feel.

The Tigger Syndrome

Anyone who is a lover of Winnie-the-Pooh by A.A.Milne will know what I am talking about. If you aren't a fan, visit the official Disney Winnie-the-Pooh and find out a little more about Tigger. For those who don't know, his hobbies include:

"Bouncing, causing mayhem, exaggerating the truth"

For those of us who are fans, we also know that Tigger isn't a "malignant" character. He never intends to cause harm. He just gets side-tracked, is over-enthusiastic (some would say out of control :)), and has a very fertile imagination.

Perhaps Tigger has executive functioning difficulties....

Perhaps he forgets to stop and think before he acts. Perhaps his "inhibitory control" is not functioning as it should.

As Oates and Grayson (2004) state,

"If you were unable to inhibit responses to stimuli that do not relate to the task that you have planned to do, then it would probably be impossible to complete it and achieve your goal. You would be drawn from one stimulus to another, in a haphazard fashion, and it would be impossible to undertake any coherently organised action."

Example: Having a conversation

A conversation with a child who has difficulty with inhibitory control may go something like this...

Hi, Billy. That's a great picture you are drawing. Can you tell me about it?

Yeah. I am drawing a truck. I saw a truck the other day. It was red. I spilt red jelly all over my mum. She told me I had to clean it up. My room has lots of cupboards. I have a nintendo......

The original goal of the conversation was lost as the child followed whatever train of thought occurred. This can happen with tasks, where a child gets distracted by sights, sounds, movement and any other irrelevant stimuli. This is quite natural for very young children, but as we grow older and develop our executive functioning skills this behaviour should disappear or at least dramatically decrease.

In the next post I will explore some ways to help children with inhibitory control issues stay on task

Reference:
Oates, J. & Grayson, A. (2004). Cognitive and Language Development in Children. Blackwell Publishing: Oxford.

Helping children self-correct and problem-solve

2010-07-27T20:28:00.023+10:00

How do you avoid meltdowns when something changes? How do you help your child recognise that what they are doing is making others upset? How can you help a child recognise when they have said or done something that "crosses the line"? Or when someone else has done something to them that "crosses the line"?

Prepare

You are about to go to a new shopping centre. Or your child is about to go to a new school. These situations will bring up a whole range of new information that they will need to quickly process in order to behave as expected and cope.

For children with executive functioning difficulties, as mentioned previously, this will cause many difficulties (Oates & Grayson, 2004). The best thing to do is to prepare your child as much as possible for their new environment.

Talk about what is going to happen. Talk about the environment, and set relevant rules (Dodd, 2005). Further, whilst talking use video, photos, even a drive past or short preparatory visit to help them process as many things prior to the visit where possible. This will help limit the amount of new information they need to process when making choices about their behaviour.

Using repetitive patterns of language, such as if... then... statements, can also children develop an awareness of possible consequences. This means that this is one less thing that they have to think up in a difficult situation.

Rehearsal

The importance of repetition and rehearsal has been discussed previously, but it is important to recognise the significance of role play in helping children develop self-awareness and problem-solving abilities. For young children, this may be done through dress-ups and dramatic play.

For children who struggle with imaginative play, using scripts will be important. That is, teach the child to use a set phrase or set of actions in response to a situation. Older children might want to help you design a screen play and video their new skill.

Visualise

Children with executive functioning issues will need help storing the information and skills, so they need a concrete reminder to carry around with them in case of "emergencies." Ways to do this include:

A task card
A social story
A comic strip
A picture sequence

The bottom line is to ensure that any visuals are small enough to carry in the child's pocket or on a lanyard or key ring. They need to be immediately accessible, but hard to lose.

Teach emotions

Help children get feedback from others around them by teaching them about body language and facial expressions. You can do this through books, videos, photos and picture strips (Dodd, 2005).

Recently I borrowed a great book called Sometimes I feel....: How to Help Your Child Manage Difficult Feelings by Dr. Samantha Seymour. Apart from the great hints and tips for parents/teachers at the beginning of the book, it is full of great photos of different facial expressions and body language. It also helps build awareness of what can cause someone to feel a certain way.

For example, pages 14-19 read:

Sometimes I feel angry... like when my mummy tells me I have to eat my breakfast before I can go outside and play. Or when it's my turn and my sister won't share."

These are accompanied by relevant photos of young children. This is a great book to help children recognise what can cause others to feel angry, sad, worried and so on. Knowing this can help them self-correct more effectively.

Dodd (2005) also discusses the usefulness of video modelling. This is effective as it can be played over and over again, and can demonstrate step-by-step a process of dealing with or responding to certain emotions.

Another great strategy highlighted by Dodd (2005) on page 187 are little picture cards that include an illustration of an emotion with relevant questions (see image adapted from her examples below).

Have a crisis management plan

It is important to also anticipate difficult emotions and situations when a child may not be able to cope. Have a plan for those times.

One of the strategies that has been discussed previously is the use of a feelings thermometer. This is a visual way of helping children recognise and manage difficult emotions.

Be proactive and positive

But most importantly, we should remember to always be proactive - prepare and anticipate in order to prevent negative events as much as possible - and positive, giving praise and positive reinforcement rather than focusing on "don'ts".

References:

Dodd, S. (2005). Understanding Autism. Sydney: Elsevier.

Oates, J. & Grayson, A. (2004). Cognitive and Language Development in Children. Blackwell Publishing: Oxford.

To Include or not to include?

2010-07-24T21:09:00.010+10:00

Special Education - "What's best for kids?" - as on seen on Weekend Sunrise Channel 7

And just as an additional note...

Article 23 of the UN Convention of the Rights of the Child (to which Australia is a signatory):

1. States Parties recognize that a mentally or physically disabled child [child with an intellectual or physical disability] should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community.

...

3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development.

And 4.2 of the Commonwealth Disability Standards for Education (2005) states:

(1)The education provider must take reasonable steps to ensure that the prospective student is able to seek admission to, or apply for enrolment in, the institution on the same basis as a prospective student without a disability, and without experiencing discrimination.

(2) The provider must ensure that, in making the decision whether or not to offer the prospective student a place in the institution, or in a particular course or program applied for by the prospective student, the prospective student is treated on the same basis as a prospective student without a disability, and without experiencing discrimination.

(3) The provider must:

(a) consult the prospective student, or an associate of the prospective student, about whether the disability affects the prospective student’s ability to seek admission to, or apply for enrolment in, the institution; and

(b) in the light of the consultation, decide whether it is necessary to make an adjustment to ensure that the prospective student is able to seek admission to, or apply for enrolment in the institution, on the same basis as a prospective student without a disability; and

(c) if:
(i) an adjustment is necessary to achieve the aim mentioned in paragraph (b); and
(ii) a reasonable adjustment can be identified in relation to that aim;
make a reasonable adjustment for the student in accordance with Part 3.

If you want to see the Facebook debate, visit http://www.facebook.com/group.php?gid=134329293268218

Helping children adapt to change

2010-07-05T14:37:00.020+10:00

Self-Correction:

"The ability to monitor and accurately evaluate performance and to make changes. Ability to learn from experience and feedback." (Queensland Health, 2007)

Problem-solving:

"The ability to recognise when the actions you are taking are ineffective, to stop, re-evaluate, and to formulate a plan." (Queensland Health, 2007)

Struggling with change

It would be simplifying things far too much to draw a direct link between executive functioning issues and children's difficulties adapting to change in their environment. However, it can play a significant part in this. But before I discuss the problem-solving and self-correction element of executive functioning, I want to look quickly at changes that children may find difficult to deal with, what behaviour they may display, and some other key factors that can contribute to difficulties adjusting to change.

What changes can cause difficulties?

There are many changes that can cause children with Autism Spectrum Disorders, anxiety disorders, depression, ADHD and even children who are chronically tired to feel threatened or anxious. These can include:

New people
Familiar people behaving differently
Interrupted routines
A favourite toy missing
New sounds
Moved furniture
Complex, unpredictable interactions
(Dodd, 2005; Oates and Grayson, 2004)

In fact, almost any change that a child with these difficulties is not prepared for will cause them distress.

What might you see?

Every child will have their own individual way of demonstrating that they aren't coping, or don't know what to do, when dealing with a change. Some examples:

Meltdowns: I have talked about these in a previous post.
Withdrawal
"Stubborn" behaviour, or refusals. This often comes up in the context of children with Down Syndrome.

Executive functioning, self-correction and problem-solving

These elements of executive functioning, alongside the ability to plan and self-evaluate, help us adapt to the changes and complexities of life. As Oates and Grayson (2004) discuss, "the ability to switch flexibly between planned actions and different approaches to a task, without losing sight of the goals that are being aimed for, is a high-level cognitive function that is critically important in everyday life." (p214) That is, in order to cope with the many complexities of life - social, academic and physical - we need to be able to constantly evaluate, identify what is/is not working and adjust our behaviour accordingly.

When the executive functions aren't developed appropriately, then children will have difficulties adapting to change unexpected behaviour.

For example, imagine you are a child who loves playing in the sandpit with your two close friends. Ever since you have been at school the three of you have gone directly to the sandpit as soon as the recess bell has rung. Then one day you are heading out to the sandpit and one of your friends decides they want to join the hand-ball games instead.

You want your friend keep to your routine, so you say, "Come on! Aren't you coming to the sandpit?"

Your friend replies, "Nah. Today I feel like playing in the sandpit."

You say, "Aww. Come on! Let's play in the sand pit. We always do!"

Now, if you have a well-developed ability to self-analyse, self-correct and problem-solve, once you start noticing that your friend is becoming annoyed, you think about previous experiences, what you have been taught, how your behaviour is effecting them. You then correct your behaviour and problem-solve based on your goal of maintaining friendships ... which could mean you join the hand-ball game or go to the sandpit with your other friend.

If you have executive functioning difficulties, you would probably keep insisting that your friend maintain the routine. You may become aggressive in your attempts to maintain the routine (eg. pulling the child towards the sandpit) or have a meltdown as you are unable to work out what to do next since your routine has been broken.

Other reasons why children may struggle with change

Theory of mind or social imagination (as discussed in a previous post) ... Not being able to interpret and respond appropriately to your social context will lead to difficulties with problem-solving and self-correction, or the ability to be flexible and adapt to your environment.
Intellectual Disability ... a person's IQ is only one element of diagnosing an intellectual or developmental disability. The other element is an assessment of adaptive behaviour. As the American Association of Intellectual and Developmental Disabilities states, adaptive behaviour is about the ability to use language, social, conceptual and practical skills to live independently and according to the social expectations of our culture. It is therefore recognised that a person's cognitive development influences their ability to problem-solve and self-correct.

Next time....

Next time I will talk about ways to help children self-correct and problem-solve.

References:

Dodd, S. (2005). Understanding Autism. Sydney: Elsevier.

Oates, J. & Grayson, A. (2004). Cognitive and Language Development in Children. Blackwell Publishing: Oxford.

Queensland Health. (2007). Executive Function and Capacity. Retrieved 8th May, 2010 from http://www.health.qld.gov.au/abios/documents/behaviour_mgt/exec_functn_capacity.pdf.

A-way with visuals

2010-07-02T17:26:00.019+10:00

The heading is a slight (perhaps a poor) play on words... I am painfully aware that I have been neglecting this blog (ie. "away") for the last month. Here are my excuses (plus a few resources and a bit of useful information for you).

Playgroups for children with Autism

In Australia, the government and Playgroup Australia have teamed up to fund playgroups for families of children with Autism Spectrum Disorders or Autism-like symptoms. These are called PlayConnect Playgroups.

So while I have been neglecting you, I have been investing time in connecting with some special people helping children with Autism in my area, and with a few families whose children have Autism Spectrum Disorders or language delays.

Medowie PlayConnect

Medowie PlayConnect started on the 18th of June. We run on Fridays from 10am until 12noon. I am the facilitator of the group and have really enjoyed getting to know the parents and children who have come along for the last few weeks.

Our Schedule

While we are pretty flexible because we are all just getting used to each other, this is our little schedule which helps us keep track of what is going on. If you want to use these pictures, you can access it here...

This website has a whole variety of visuals that can be used for both pre-school and school aged children, at home and at school.

Our Hello and Good-bye Song

At Medowie PlayConnect we also have a "hello" and "good-bye" song. You can find it here (in pdf format) ...

We are using a little AUSLAN sign language with the song, and you can click on the links in the document above to watch short clips of the key signs for our song. Feel free to use it if you need a short greeting and farewell song.

And another thing....

I have also been busy marking assignments, all of which were about finding ways a child with ADHD can be included in a wide range of different lessons and classrooms... there are some great ideas and great teachers coming your way :)

I am also preparing for my presentation at the Autism and Aspergers Support Group in Richmond on the 12th of July. We will be having some discussions about bullying and inclusion. To find out more, visit http://www.autismsupport.org.au/

Hopefully I will see you there.

And I promise more posts this month - to finish off the series on executive functioning.

Routines to help children get started

2010-06-23T00:54:00.007+10:00

Q: What do you do with the child who can't seem to get organised in the morning?

A1: Have a set routine - repetition and rehearsal replaces the difficulties caused by executive functioning issues. It means that the routine becomes automatic - you don't have to think, analyse, prioritise or plan. So do the same things, in the same order to start the day.

A2: Use visuals - especially for young children or children with language and/or literacy difficulties.
A3: Use checklists - especially for older children or children who have good literacy skills. You can do this on little whiteboards, or you can use a table like the one at www.do2learn.com.

A4: Have a time frame - leaving time open can increase the chances that the child will daydream, or spend too much time focusing on details rather than the sequence of things they need to get done.

I recently went to a workshop by Dr Lee Sturgeon where he talked about the use of a Time Timer. This is a great tool that will help children keep track of how time is passing. You can find information on the different formats on the following links:

Spectronics - find the watches, clocks and software application here.
The iphone application can be found here.
Find the complete package here - iphone application, software version and traditional clock version.

Q: What do you do with the child who takes ages to get settled in class?

A1: The same as might be done at home: have a set routine. This might involve a simple routine that determines the sequence in which the necessary equipment for the day is unpacked. Or it may simply be a routine such as:

Line up
Walk in quietly
Sit down
Get out your pens and books
Look at the teacher

A2: Again, as with home, use visuals to represent your routine.

A3: Use checklists and advanced organisers. For example, this chain of events graphic organiser from educationoasis.com. You can find more here and here.

A4: Have a time frame - this is very important in classrooms as children with executive functioning issues often get "left-behind" at the beginning of lessons as they struggle to get organised and started. This can then have a significant impact on the rest of the lesson - or the rest of the day.

Getting Started takes initiative

2010-06-14T15:28:00.006+10:00

Children with executive functioning issues can find it very hard to get started and persist with a task (Kidsmatter, 2009; Queensland Health, 2007). This is due to the "initiation" element of executive functioning.

One of the reasons why children with executive functioning issues have this difficulty is because they find it hard to filter, or prioritise, activities and information (Dodd, 2005).

An Example

Have you ever woken up on a day when there are a hundred different things you need to do? How do you decide on what to start with?

One way we make decisions on where to get started is by identifying what is most urgent or important. But this requires the ability to identify what our goals are (planning) and what we are able to do in the time we have with the skills we have (self-evaluation). So if you have trouble with all these things, you could:

Spend all day lying in bed stressing about where/when/how to start
Start a range of tasks and never get them finished as you get distracted by the possibility that you are not focusing on the most important task.
Choose something randomly, with a high chance that the task turns out to be one that you could have done another time, while a more urgent task goes untouched.

As you can imagine, this can have a significant impact socially, academically and in every day tasks for children with executive functioning issues.

At home

Due to this struggle with initiation, children will find it difficult to:

get ready for school on time
follow every-day routines without verbal, written or visual reminders
clean their room without being distracted by a favourite book, toy or TV show

At school

Due to the struggle with initiation, children will find it difficult to:

Concentrate on the task at hand without being distracted by what is going on around them
Get organised and ready to start at the beginning of a lesson
Finishing what they have started

In the next few posts we will explore how we can help children prioritise, organise and stay on track even if they do have executive functioning issues.

References

Dodd, S. (2005). Understanding Autism. Sydney: Elsevier.

Kidsmatter (2009). How Attention Deficit Hyperactivity Disorder (ADHD) affects children. Retrieved 8th May 2010 from http://www.kidsmatter.edu.au/wp/wp-content/uploads/2009/09/adhd-overview.pdf

Queensland Health. (2007). Executive Function and Capacity. Retrieved 8th May, 2010 from http://www.health.qld.gov.au/abios/documents/behaviour_mgt/exec_functn_capacity.pdf.

Introducing Rainbowland Autism Services...

2010-06-12T11:25:00.020+10:00

Guest post by Allison Dix from Rainbowland Autism Services....

Our Family...
Our three children were all diagnosed as having an autism spectrum disorder in July 2007. Kristie, who was 8 at the time, was diagnosed with a Asperger’s Syndrome. Our twin sons, Jacob and Aaron, were diagnosed with autism one week shy of their 3rd birthday.

Rainbow Play TimeShortly following the diagnosis, Shane and I vowed to help support families through the whole process as we intently believed that it didn’t have to be as difficult for others as it was for us. This vow lead to the inception of our family support group, Rainbowland Play Time in March 2009. With a focus on family inclusion and support, this group runs once a month on a Sunday, has no age limits and welcomes the entire family and their support networks to attend for a gold coin donation.

Rainbowland Play Time has been a gift not just to the families who attend, but to our family. We have made some wonderful friends and been witness to some fabulous milestones experienced by the children and their families. My favourite moments have been when children ride a bike for the first time at Play Time. The delight on the face of the child and their parents is so precious and makes it all so worthwhile.

Into the political arena...
Shane & I were fortunate enough to be selected for a meeting with the Prime Minister, Kevin Rudd, at the Federal Cabinet Meeting & Public Forum held on 28th July 2009. We raised issues pertaining to the inaccessibility of the newly implemented early intervention funding from the Helping Children with Autism initiative, the crisis and inequities for children with autism within the education systems around the country and the struggles faced by families. To our surprise, we were also granted an impromptu meeting with the Parliamentary Secretary for Disabilities and Children Services, Bill Shorten.

Rainbowland Autism Services...

Rainbowland Autism Services Inc. was incorporated in November 2009 and granted charity status. A board, comprising of 6 members was established. The incorporation of the organisation will ensure much greater opportunities for the families it supports.

Autism Rainbow Day...

After a family discussion in the kitchen regarding the lack of autism awareness within the community and how more awareness would greatly benefit families and society at large, Autism Rainbow Day was born. On 30th April this year, the inaugural Autism Rainbow Day was held, with 15,000 international members on the dedicated Facebook cause. The day was very uplifting and positive for those who participated and it was wonderful to see people greeting others with a “Happy Autism Rainbow Day”.

I have received some wonderful feedback from educators about how they now have a much greater appreciation of what autism is and how inspired they are when learning about the obstacles that need to be overcome for people on the spectrum to become functioning members of society. Our daughter’s Year 6 class teacher initiated meaningful discussions about autism throughout the week in the lead-up up to Autism Rainbow Day and Kristie’s life and achievements were celebrated by her peers. What has been really touching is how some young students from the school have since approached me in the court yard to talk about Autism Rainbow Day. I also got quite emotional when I saw pictures of the children wearing their special masks on the big screen at the school assembly. Autism Rainbow Day will be held on Friday 29th April in 2011.

A Tribute...

On 13th May this year, Tony Zappia – Federal Member for Makin paid tribute to the work we are doing through Rainbowland Play Time and Autism Rainbow Day. It was such an honour for us that he dedicated his entire Parliamentary Speech to our work.

In his speech, Tony says:

“In Australia autism is estimated to affect one in every 160 Australian children and around 30,000 Australian families. The estimated cost of autism to the Australian community is around $7 billion per annum. The social impacts on and costs to the children and those 30,000 families in the form of learning difficulties, limited social opportunities for the children and very high rates of parental depression and separation are immeasurable. There is no cure for autism but providing the right kind of early intervention can be very beneficial for children and, in turn, ultimately saves millions of dollars in costs later on.”

He then went on to say:

“Speech therapy, early intervention, occupational therapy and home modifications all help, but for the families they come at a cost, as does the destruction to the school life of the children, which raises an additional concern. Many schools are simply unprepared; they do not have the resources or the expertise to deal with children with autism. In that respect, autism-specific preschools such as that in Brisbane are a terrific start.”

To read the speech in full, visit our Facebook note or at: www.openaustralia.org

Tony has been such a wonderful support to our organisation and is the Patron of Rainbowland Play Time. Through his work, he is also advocating for all families living with autism in Australia.

Our goal...

Rainbowland Autism Services strives to provide support services for the entire family. When you support the network of people who are the main influence in a child’s life, you are directly supporting the child. We also provide support to families of children with developmental delay. Too often these families don’t have access to support services in the absence of an ASD diagnosis. We continue to work assiduously in expanding our support services and generating awareness about autism at a global level through Autism Rainbow Day.

For more information, you can visit our website at www.rainbowlandautismservices.com, or email us at rainbowlandautismservices @ gmail.com

...

To find out more about having your charity, service or business spotlighted here, contact us or visit www.learn2bebuddies.com.au

Ask Amanda: An update and a review

2010-06-11T09:33:00.008+10:00

As usual, with the mad rush to get the Learn to be Buddies newsletter out, I have neglected my blog for a little while. Now the rush is over, it is time to get back to it ....

About our theme

Because executive functioning is such a complex and important topic, and I didn't get very far with it last month, I will continue writing on this topic this month. But before I start writing on this theme, I thought I would mention two things...

A Spotlight...

As part of the Learn to be Buddies sponsorship scheme, we are beginning a monthly spotlight on charities or businesses that a particularly relevant to the Lear n to be Buddies mission. This month we are spotlighting Rainbowland Autism Services. Make sure you check out their services and support their cause. Shortly Allison will be writing a post for us to tell us all about what these are.

A review...

I also wanted to share a little from the workshop by Dr. Lee Sturgeon that I attended recently. I shared some information that related to bullying on my Learning to be Buddies Series blog. But here I just wanted to share some of the answers Lee gave to questions asked by parents in the audience.

Toilet Training Tips

Lee was asked about any tips he could give for a situation where a child was fully toilet-trained at home, but was struggling to use the toilets at preschool. His suggestions included:

Try giving the child access to a private toilet, such as the staff bathroom. It may be the fact that they have to use a public toilet ("in a fishbowl" was Lee's analogy) that is putting the child off using the toilet at preschool.
Video the child if/when they do use the toilet, then watch it and praise the child for that behaviour at home (applied behaviour analysis). My note: You as a parent may need to do this as many preschools would be reluctant to tape so intrusive a video. Lee's tip about using video as a teaching tool: Make sure you focus on the positive rather than video-ing something you don't want them to do, watching it and saying "Don't do this."
When toilet training a child with ASD, make sure you do so with a range of different toilets - not just stick to one. This helps them generalise the skill, or use the skill in a wide range of settings not, as Lee said, "just in the ensuite at home."

Service accessibility

There were a number of parents who were asking about how/where they could access services for their children due to the limited availability and long waiting lists for Medicare and FAHCSIA funded services. Lee talked about asking your GP to establish an Enhanced Primary Care Plan or a Mental Health Plan, both options allowing parents to access Medicare refunds for private consultants and therapists.

Medication

Another question that came up was the issue of medicating children with Autism Spectrum Disorders. Lee talked about the fact that many children with Autism Spectrum Disorders have a secondary diagnosis. For example, they may also be diagnosed with anxiety disorders or ADHD.

He suggested that it is usually these secondary diagnoses that lead to medication. He stated that he used medication for his clients especially for anxiety in the middle school or adolescent years. His statistic was that 40% of children in transition to high school were on medication to help them deal with anxiety.

However, he had one emphatic warning: Make sure you see a specialist in the field of Autism/Aspergers for the prescribing of medication. The main reason is that children with Autism Spectrum disorders often respond differently to medication than do their peers without these disorders.

As you can tell, this workshop was great. It was also free, thanks to a government initiative. I will keep my eye out and let you all know if there is another on coming up in the future.

*

The importance of routine...

2010-05-31T21:37:00.011+10:00

We can help children with executive functioning issues using routines.

For example, a child with ADHD may lose track of time, not remember where they are up to or what they are meant to be doing. They may hear a school bell, and not know what it means. as bells at different times mean different things.

Routines can be used at home as well as at school. But there are some key elements to making them work.

Be Clear

The best way to make sure the routines are clear to a child is to provide them with a written or visual schedule. First thing of the day, either in class or at home, go over the schedule so the child knows the goals for the day. This will help them follow a pattern or plan to achieve the desired goals.

Goals such as getting ready for school, listening to the teacher, playing with friends, catching the bus... all these have associated behaviour and social skills. If there is a familiar routine, the child is more likely to have success with these goals.

Image from Sparkle Box

Stick to the Plan

It is important that once you establish a routine that you stick to it. Variation can cause behaviour difficulties such as meltdowns that come out of the child's difficulty in adjusting to changes ... which is about the difficulty with flexible thinking, a topic I will discuss when I come to the self-correction element of executive functioning.

If you can't, give warning

There will be times when unforeseen circumstances may interrupt the routine. As far as you are able, make sure that you talk to the child about this. Use visuals to prepare them for the change. This could be about getting them involved in taking one thing off their timetable and replacing it with the new event. This will help them process the information.

Rehearsal

However, as discussed in the previous post, repetition is the key. The more you repeat a process, the more automatic it will become. This way it will be easier for a child to keep track of what is going on and what they should be doing in different settings at different times.

It will help them plan, or act with purpose as they work to achieve a goal either socially or academically (Oates & Grayson, 2004).

Visual cues to help planning

2010-05-23T16:12:00.007+10:00

Recently I wrote a post about the Stop, Think, Do! program on the Learn to be Buddies Series blog. This has been used with some success with children who have executive functioning issues because it helps with the planning process in social situations.

I will discuss the "Stop!" step when I address the inhibition element of executive functioning. In this post I want to focus on discussing the "Think!" phase.

Think!

The "think" phase is about helping children think ahead, identify choices and consequences for their actions before they act.

The catchy, simple phrase "Stop! Think! Do!" is acts like a script in a play. It provides structure to help a performance run smoothly. But the only way it can work is if it is rehearsed and if we have prompts in place to remind a child about what they should be doing if they get off track.

Prompts

At first introducing a child to this phrase, you will need to discuss each step. When you come the the "Think" phase you will need to find ways to help children make links between the way they act and how this affects others.

One way can be developing "if ... then ..." visual or verbal statements depending on the child's way of learning. If you are helping a child with Autism, it is usually best to use visuals. If you are helping a child with ADHD, visuals may be appropriate but you may find that older children/youth can also learn through verbalising "if...then" statements.I made up this little visual prompt using microsoft clipart, but there are many different options for visuals. More and more schools, preschools and other services for children with disabilities have access to Boardmaker, which is a valuable tool for helping children who learn visually.

If you are using visuals, make sure they are hung in and around the places where the behaviour is most likely to occur. The example above would be hung in any room or space dedicated to craft activities. This way the child's memory will be constantly triggered every time they look up. Further, you will be able to use the visual to remind children about the consequences for their actions.

Rehearsal

It is important that any script or prompt be used repeatedly. This repetitiveness helps children with executive functioning issues remember.

Executive functioning issues effect the working memory and so can make it harder for things to "stick". The more you use the phrase, "Stop! Think! Do!" and the same visual prompt, the more likely it is to "stick" with the child. The product of this is hopefully helping children plan and make more appropriate choices socially and in risk-management.

Just remember:

Children won't be able to plan if they don't first stop. Don't try to talk a child through a problem if they are in the middle of a melt-down. Help them relax and regain control first.... I will talk more on this when I come to discussing the "inhibition" element of executive functioning.

Executive Function and Planning

2010-05-22T13:27:00.010+10:00

"Planning... is about intending to do something that will achieve a goal."
(Oates & Grayson, 2004 p214)

The second key element of executive functioning is the ability to plan before you act. This function helps us identify what we want to do and predict what might be the consequences of our actions (Queensland Health, 2007).

When it works well...

Imagine you are at a social gathering and you have just been introduced to someone new. What you notice first is what they look like. But you choose not to say anything about their purple and orange striped hair, or lush purple pants worn with a startlingly red sequenced top that is perhaps several sizes too small for their curvaceous figure.

Instead, you say something like, "So how do you know Kim?" (which is the mutual friend who just introduced you).

This is because you have a plan: To get to know someone new and avoid offending them or your mutual friend.

And you have thought about what fits with that plan: This is based on what you predict will be the consequences of various things you could have said based on your knowledge of social rules and theory of mind.

Theory of mind

Theory of mind is broadly defined as the ability to predict or think about what others may be feeling. Robson (2006) adds that it is about:

"understanding that other people's thoughts, beliefs, feelings and desires may differ from our own, and that our own can change over time." (p70)

This is what helps us empathise, behave with respect, as well as avoiding being tactless and behaving in ways that hurt or offend others. It has also been called social imagination - see this previous post for further discussion.

When you forget to plan...

Think back to the previously described scenario where you have been introduced to a colourful new person. If your executive function of planning is not working efficiently, instead of acting according to a goal you might simply say whatever comes into your head.

For example, "My goodness, your hair is bright!"

"Your top is a bit small, isn't it?"

"Why are you wearing purple pants?"

"So you're the entertainment for the party?"

All of which are likely to produce reactions such as embarrassment or anger or other responses not helpful to the development of new friendships.

Statements like this might be cute (though still embarrassing) coming from very young children - basically because they have not yet had enough experience to develop awareness of the consequences for such statements. But as adults it is expected that you would have a bit more tact and respect for individual differences.

Alternatively, you might get away with saying things like this to a close friend, someone you know well and who knows the intent behind your words is not nasty or destructive. But, if you had really thought about the consequences of your words, these should not be the first words you say to someone you have just met.

How it effects learning...

Without planning we will struggle with:

Bringing all our equipment to class
Getting assignments done on time
Completing our work in a logical, step-by-step way in the time allotted in class

What can we do?

Next time I will write about what we can do to help children with executive functioning issues plan before they act.

References:

Oates, J. & Grayson, A. (2004). Cognitive and Language Development in Children. Blackwell Publishing: Oxford.

Queensland Health. (2007). Executive Function and Capacity. Retrieved 8th May, 2010 from http://www.health.qld.gov.au/abios/documents/behaviour_mgt/exec_functn_capacity.pdf

Robson, S. (2006). Developing Thinking and Understanding in Young children: An Introduction for Students. Routledge: London.

.

Using Journals and Charts to help older children self-evaluate

2010-05-20T10:02:00.007+10:00

I just wanted to write one more post about the self-evaluation element of executive functioning because it plays such an important role in our children's self-esteem, learning progress and social development. In this post I want to focus on how we can use a KWL chart and/or learning journal to help children identify their successes, what they have learnt and what they have yet to learn.

A KWL Chart

Blaxendall (2003) discusses how important advanced or graphic organisers can be in helping students with special needs organise their thoughts and recall important information when approaching an academic task. A KWL chart is one example.

As seen above, this chart has three columns. The first and second columns are completed before a student begins a task or is introduced to a new topic. The first column is a way to help them "brain-storm" or activate their "search engine" for anything they might know on the topic. The second column is to help them think about what they don't know (recognising their limitations), and it also helps engage them with the topic as they think about what might interest them.

The final column is an explicit way of noting down their successes. This chart can then be pulled out the next time they complete a task on the same topic, helping them to recall information and self-evaluate before they start the new task.

A Learning Journal

A learning journal is an informal way of doing the same thing. It can be a place to record words learnt, formulae that need to be remembered, work samples (like work sheets, photos of a project completed) of which the child is proud. All these can help students, no matter what their age, recall important information.

A learning journal should be something that records the most important information, like a study guide, rather than the child having to search through pages and pages of writing or activities that have been done in class.

A final word on self-evaluation

On a final note, it is important to acknowledge once again that children with executive functioning issues can find it hard to find the completion of a task or success in a social situation intrinsically rewarding. That is, they may not get the same feeling of pleasure or satisfaction from a task well done, or from successfully resolving a conflict with a friend. For this reason our rewards systems, or extrinsic rewards, are very important in helping to build their self-efficacy and desire to use the skills they have been taught.

References

Baxendell, B.W. (2003). Consistent, coherent, creative: The 3 C's of graphic organizers. Teaching Exceptional Children, 35(3), pg. 46.

Helping children/youth put things in perspective

2010-05-18T00:03:00.006+10:00

A broken search engine can lead to unbalanced thinking.

To help us "understand and measure [our] strengths, weaknesses, resources, and opportunities [and] understanding of the difficulty level of specific tasks" (Queensland Health, 2007) we need to think back on our past experiences. If our "search engine" isn't working, or if we can't relate anything we have done before to the activity or task, then we can find it very hard to be balanced in our thinking.

Panic!

An example is when I went with a young relative of mine to the Sydney Aquarium. The closer we got to the Aquarium, the more unsettled the child was - until we got nearly to the entrance and the tears and panic began.

It turned out that the presence of sharks was the trigger for the distress. But once we had talked about the fact that the sharks were behind thick glass, and that many people were coming and going without being harmed, the panic subsided.

Think Good, Feel Good

One of my favourite books is Think Good, Feel Good by Stallard (2002). There are two versions of the book, one for younger children and one for youth. The book is written in simple language and has a lot of teacher/parent resources that could be used to help children/youth with problem-solving and managing their thoughts and emotions. I have a copy of the booklet for youth.

In Chapter 7 Stallard talks about challenging our negative thoughts. He provides a table that could be used when youth have got into a cycle of thinking that is preventing them from recognising their strengths, resources or opportunities. The table guides youth to answer the following questions:

What were your thoughts and how strongly to you believe them? (Use the scale or a "thought thermometer" to rate it - see below)
What evidence supports your thoughts? What evidence challenges these thoughts? (This encourages youth to look for facts - activating their "search engine")
What would your best friend say about these thoughts? What would you say to them if they had these thoughts?

All this aims to help them work in a step-by-step way through the process of self-evaluation, and to self-evaluate in a balanced way by using the questions to prompt memories or bring up relevant information.

References:

Queensland Health. (2007). Executive Function and Capacity. Retrieved 8th May, 2010 from http://www.health.qld.gov.au/abios/documents/behaviour_mgt/exec_functn_capacity.pdf

Stallard, P. (2002). Think Good- Feel Good. John Wiley & Sons: Australia

Helping children self-evaluate

2010-05-15T22:03:00.011+10:00

To help with self-evaluation, we need to help children keep records of their successes - and review their limitations.

In the last post I addressed self-evaluation, one task driven by our executive functioning as identified in the document by Queensland Health. As mentioned, when our executive functioning isn't working as it should, we find it hard to "search" our previous experiences and learning to work out what strengths and difficulties we bring to a situation.

So for children with executive functioning difficulties - including many who have ADHD, Autism, anxiety disorders, cerebral palsy and a range of other conditions - we need to find more visual ways to help them recognise and remember their strengths and limitations.

Rewards and Behaviour Charts

Starting from a very young age we can use reward charts to help children identify and remember their successes. We can use these for social and behaviour skills, as well as learning achievements.

There is a difference between using rewards as a "bribe" and using them as a prompt for their memory. For example, if you say "If you do ...., then you will get..." then the reward becomes a bribe. If you say, "Let's look at our stars. What do we need to do?" then the reward becomes a reminder.

A very subtle difference, but one that is important.

For a reward system to work as a reminder rather than a bribe, it needs to be focused on specific things. See the example below from www.freeprintablebehaviorcharts.com/

If used well, rewards charts can be a visible record of achievements, reminding children of what they are able to do, as well as a reminder of what you want them to do.

For some great, free behaviour charts and records visit www.freeprintablebehaviorcharts.com/ If you know of any others, please share them with us.

Social Stories

I have discussed social stories at length in a previous post, so I won't discuss them in depth here. However, it is important to recognise that social stories can help children recognise their limitations as well as their strengths.

For example, a social story can be used to explain when they should ask for adult help when faced with bullying or other safety issues.

"I will try to find an adult when someone bigger than me says things that make me sad."

Communication Book

I wrote a little about communication books in a previous post. These are not only great ways to keep the communication lines open between home and school when a child has communication and/or memory difficulties. They are also great records to help remind a child of what they have achieved and learnt.

Read the communication book together like a storybook. Read it before your child goes back to school if possible. This can stir their memory and help activate their "search engine" for relevant things to apply to their day.

Hang reminders everywhere...

Hanging reminders (with visuals such as those you can find here) everywhere can also help children self-evaluate.

"I can tie my own shoe laces!"

"I can get dressed by myself!"

"I can carry my own bag."

"I can say, Thank you! when somebody helps me."

In the next post I will explore some strategies for older children, like using diaries and learning journals....

Executive function, self-esteem and risk taking

2010-05-13T08:36:00.009+10:00

Executive function is like your own personal search engine.

When you face a task or situation, this brain function immediately goes into search mode. It asks the questions:

Have I done this before?
How did I do it?
What did I do that was successful? What didn't work?

This helps you to face the task or situation with a real sense of your abilities and limitations.

Why some toddlers have no fear

Many toddlers do things that give their parents heart-attacks (not literally, of course). Things like climbing in unlikely places. Or running off to explore... despite busy roads and the risk of getting lost.

Why do they do these things?

Because they haven't yet built up a bank of information that tells them what is safe and what is dangerous. Or, to put it in other language, they haven't had a wide range of experiences that their "search engine" can draw on to build a picture of their abilities and limitations.

Why some children with executive functioning issues have no fear

As we heard in several of the parent stories told last month, one of the greatest fears for parents of children with Autism was the fact that they may run away when in public. This is not because of a lack of experience. This is because their "search engine" isn't working in the same way as other children their age.

This means that if you are walking them through a shopping centre, and they see something they want, their executive function does not flash warnings based on prior experiences and what they have been taught... eg.

"I might get lost if I run away"

Instead, their "search engine" doesn't kick in, and they may act without applying any thought about previous experiences at all.

So, for children whose executive function is affected by different conditions, you might find that they take big risks - physically (like getting stuck up a tree), emotionally (like trusting someone who ends up bullying them), or academically (like picking books to read that are beyond their reading ability).

Why some children with executive functioning issues live anxiously

The other side of this difficulty using their "search engine" is that children will also not be able to recognise and apply their strengths. If you approach a task or event without applying memories about previous experiences of success, you are less likely to feel confident.

This contributes to children being timid or anxious in new environments. It also may mean that they struggle with a task that they had successfully completed in class the day before. And it may also contribute to timidity or shyness when interacting with other people.

So executive functioning can effect your self-efficacy, or your belief in your own ability built up by learning from watching others and your own experiences (Cherry, nd). This, in turn, plays a role in your self-esteem.

Who might have these difficulties?

Children who might have these difficulties include those affected by Autism, ADHD, Bi-polar Disorder, Depression or other developmental disabilities.

What is Executive Functioning?

2010-05-08T15:40:00.023+10:00

"Executive functions allow us to set goals and maintain focus, screen out distractions, check our progress and regulate feelings." (KidsMatter, 2009 p2)

Executive functioning is a brain function. It helps us to understand, remember and follow all the unspoken rules and processes involved in everyday life. If our executive functioning is effected by health issues or conditions such as Autism and ADHD it can have a significant effect on how we interact with others and learn in our environment.

The Elements of Executive Function

Queensland Health (2007) discusses six key areas which are effected by executive function. These include:

Self-evaluation
Planning
Initiation
Self-correction
Problem-solving
Inhibition

This month I want to focus on discussing each of these in more depth, and make suggestions about what strategies can be used to help address the issues that arise from each area.

What might it look like?

Let's first explore what difficulties with executive functioning may "look like" in children.

Getting ready for school

Imagine a child getting ready for school. They have to remember to follow a series of steps that look something like this:

Get out of bed
Eat breakfast
Clean your teeth
Get dressed
Pack your bag with everything you need for the day
Get to the bus stop by 8.00am

For most children they may require one or two prompts during the process... but generally they will get on the bus at the right time with all the equipment they need for the day.

For children with executive functioning issues, they will struggle to monitor time. They may focus on thoroughly doing each task, but miss the bus because they couldn't get organised in time. Or they may get distracted by cartoons, seeing a football that is just begging them to kick it, looking for something.... then forgetting what they were looking for.

They many need constant reminders of what to do next, which will probably make the morning a "little" ;) more stressful. And then mum or dad will probably need to check what they have packed to ensure they have not left any important things like pencil-cases and homework at home. And because they lost track of time, mum or dad may have to run them to school because they missed the bus.

At school

Despite having their bag checked by mum or dad, they may turn up to their first class without essential equipment (eg pencils and books). They will also find it hard to settle into class, finding it hard to start concentrating on the things that are important, like the teacher's instructions, as opposed to greeting friends or trying to find their favourite pen.

And when the teacher starts to teach, the child may call out regularly- not intending to disrupt, but because they have a thought they want to express, either on the topic the teacher is talking about or about something seemingly irrelevant but triggered by what the teacher said. They either don't recognise that is not an appropriate time to speak, or only think about this once they have started speaking.

And when they get out on the playground, they are more likely to get into tiffs or find it hard to maintain friendships because they tend to not think before they act. Which means they may hit or kick when they are angry, be excruciatingly truthful about what they think of their friends, be a bit bossy or struggle to wait their turn or share.

Back home

Then when they get home they discover they have left their bag at school, containing the homework that must be done by tomorrow. When they get to school the next day, they find the bag and discover that it contains rotting food since they forgot to eat it due to being distracted by all the fun on the playground.

When they get home they also find it very hard to be controlled in any way because they have spent so much of the day trying to follow rules and not to get in too much trouble at school. Which makes the first few hours after returning from school very hectic, and homework next to impossible, with the child usually being sent outside to kick a ball, jump on the trampoline or punch their punching bag until they feel better.

These are just some of the patterns of behaviour and interaction that you might see in a child who has difficulties with executive functioning. If this rings a bell with you as a parent or teacher, then I hope the next series of posts will be useful for you.

References:

Kidsmatter (2009). How Attention Deficit Hyperactivity Disorder (ADHD) affects children. Retrieved 8th May 2010 from http://www.kidsmatter.edu.au/wp/wp-content/uploads/2009/09/adhd-overview.pdf

Queensland Health. (2007). Executive Function and Capacity. Retrieved 8th May, 2010 from http://www.health.qld.gov.au/abios/documents/behaviour_mgt/exec_functn_capacity.pdf

Autism Rainbow Day interview part 2

2010-04-30T20:18:00.005+10:00

In the previous post you heard Jackie talk about her experience as a parent of children with Autism... the rest of the interview focuses on highlighting a few support services that might be useful for parents. Scroll down to find the relevant links.

"It is not about bad parenting, it is about the child's struggle with the environment."

About Stephen Wiltshire, the artist ("autistic savant") mentioned in this interview.

Links to the support services mentioned by Jackie and I:

Balance support group

Strive support group

Hunter Connect

PlayConnect

...

I hope the blogging at Learning to be Buddies this month has helped to build awareness, and make a little difference in the lives of families living with autism. Thank you so much to all parents who shared their stories. The feedback and hits on these posts show just how valuable your stories are in helping to build awareness and helping us see your children as Children first.

....

Autism Rainbow Day

2010-04-30T16:02:00.003+10:00

Happy Autism Rainbow Day!

Today I spent the morning recording a radio interview with Jackie Hays, a mother of 3 children with Autism. You can hear some of what she says below...

Helping children with Autism reach their potential

2010-04-29T19:28:00.003+10:00

This is a great video from ASPECT that gives some information about what autism is, and what things you might be able to do to help your child.

In the video you get to meet some families and their children who have autism. Professionals are also interviewed about what parents can do once their child is diagnosed. Their suggestions include:

Research: as no two children with autism are exactly the same, each will need different forms of support. Find out about what approaches are out there by using the internet, talking to other parents, or using telephone advisory services (see www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html for a list)
Have an individualised early intervention plan: Plan for ways you can help support their communication development, development of social play and behavioural abilities. Recognise that what you do at home is as important as specialist therapy.
Visuals: Find visual ways of communicating with your child. For example, use objects (such as car keys), photos, line drawings or written words (for older children) to help them make links between spoken words and what they mean.

Getting a diagnosis Part 2

2010-04-28T21:22:00.003+10:00

Since the last post I have been listening to what parents have had to say about their response to their child's diagnosis on my Learn to be Buddies Facebook Fan page. Here are some of their responses

Not surprised - parents often recognise that something is not quite right, especially if it is their second or third child.
Relieved - often the relief came as a result of recognising that their child's behaviour was not a result of "bad parenting."
Vindicated - parents' concerns can sometimes be dismissed by those from whom they seek advice and help. When their child is diagnosed it is a vindication of their concerns. It can re-affirm parents' trust in their knowledge of their children, and their parenting skills.
"I just got on with it" - just getting on with the role of advocate for their child is another response that parents can have to the diagnosis of their child.

If you have a child who is diagnosed with an Autism Spectrum Disorder... or any other condition... what was your response to the diagnosis?

If you think your child may have Autism, but don't know what to do next, visit www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html

Dealing with a Diagnosis

2010-04-27T21:22:00.004+10:00

When parents are urged to "get a diagnosis" for their child it is often the beginning of an emotional roller coaster. Every family responds in different ways, but there will be a time of adjustment...

LD Online identified the most common stages of adjustment.

Shock
Denial
Anger
Depression or helplessness
Acceptance
Hope and action

Mary gives us a little insight into these stages with her adjustment to the diagnosis of her third child. Chantelle tells us more in her blog post "To Cure or not to Cure?..."

The bottom line is that if you are a parent who is going through the process of diagnosis with your child, give yourself time to adjust. Recognise how you are feeling, work through the emotions ... and don't be afraid to ask for help.

If you are a teacher, family member or friend who thinks a parent should be more proactively pursuing diagnosis or therapy, remember that it is not that simple. Listen, affirm and avoid giving too much advice - this can just be overwhelming. We should be on stand-by: giving information and passing on contacts only when parents are ready for it.

We should never be judgemental. Parents need to find their own way to support their child, to choose their own road, at their own pace, based on advice that they feel they can trust.

Tania's story

2010-04-26T12:19:00.003+10:00

I have a son with autism. He is 4 years old.

He loves laughing, climbing and watching stuff fall. He loves Elmo, Wiggles and the Fairies. He loves his sister, his Mum, his Dad and his Pop. He loves traffic signs.

He is really good at recognising letters, shapes, directions, numbers and colours. He is pretty handy with computers.

He struggles to communicate and to relate to his peers. He struggles to understand how hard he is touching something. He struggles to stay quiet.

Sometimes I , as a parent, find it hard when he wants to be cuddled but he cannot stop his body hitting and kicking, especially when it is the middle of the night. I sometimes find it hard when people think he is being naughty when he is actually on his very best behaviour, especially when he has worked so hard to learn the new behaviour. Sometimes I find it hard to keep my patience with others who judge our family when they don't have all the facts and when people treat you like a remedial parent because I have a child with a disability. But most of all, I find it hard when he is stimming* and I cannot work out what he needs to feel calm.

But then I think about the special moments, like when he "tells" one of his jokes and giggles uncontrollably, or he almost interacts with another neurotypical child or when, with his limited vocabulary, says something that makes it clear to me that he understands more than we know.

My life is forever richer because of my little boy. He can light up the world with his smile. He brings joy to all that take the time get to know him. He will have a brilliant life.

* "Stimming" is short for self-stimulatory behaviour - read more here.

Tell your story
and help build Autism Awareness

Financial help for respite and holidays

2010-04-25T21:46:00.002+10:00

If you are a family who really need a holiday, but are finding it hard to afford the cost of activities such as Camp Autism, then this may help...

Mary passed on that Commonwealth Carers Respite Centres (Australia) can provide up to $300 towards your holiday. To find out if you are eligible, call 1800 059 059.

Need a break?

2010-04-25T10:12:00.005+10:00

As we have seen from the parent stories being told here, going out of a child's comfort zone and into a public place brings up a range of difficulties for families living with autism. This has a significant impact on families being able to go on holidays.

As Mary says on her website, "We had stopped taking holidays with our kids as it become too much of a concern. We would be more stressed on holidays than at home. We worried our kids would keep others awake. We wondered if other kids would harm or bully them."

But she and her husband did not stop there. They decided to find out whether other families felt the same, and whether they could do something about it.

The answer to both questions was, "Yes!"... and Camp Autism was born.

Camp Autism

Camp Autism is all about giving families living with ASDs the opportunity to relax and unwind in a supportive and non-judgemental context. As stated on their website,

"The aim of Camp Autism Inc is to provide respite to these families ... We hope families will build support networks with other families for mutual support, information sharing, and fellowship."

Where?

Camp Autism camps happen around the country - in NSW, Queensland, South Australia and Victoria. They sell out quickly, so get in early!

When?

You can find a list of camps coming up here. The next available camp is happening on the 14th-16th of May in Geelong, Victoria. All the booking details are on the Camp Autism website.

What?

Want to know what happens at the camp? See some photos here: http://www.campautism.org/photo01.html

Want to know more?

Contact Camp Autism on info @ campautism.org

Mary's story

2010-04-23T19:27:00.007+10:00

I have three children with Autism.

Timothy is 13 and has Aspergers.

Timothy loves Maths and computers. At the moment he is also enjoying photography and everything pokemon.

Timothy was diagnosed when he was 4yrs old. Timothy really struggles with social situations. He will not answer our door or our telephone without prompting. Even if he knows and loves the person on the phone he refuses to chat.

Timothy has really come out of his shell with the new friends he has made at Camp Autism. I think because most of these kids also have Autism and understand his need to sometimes to walk away or ask questions.

Amy is 5 and has classic Autism.

Amy loves everything Tinkerbell. Amy also loves animals.

Amy has only just started talking in the last 2 years. Amy also is lactose intolerant and has Epilepsy. We have not been successful in toilet training with her and it is an ongoing concern as Amy started Prep this year and whilst she has no been bullied yet I wonder how accepting kids will be as they get older.

Kailyn is 3 and has High Functioning Autism and was diagnosed a week before her 3rd birthday.

Kailyn is extremely bright and can write her name and other family members' and has been reciting the alphabet and numbers from age 2.

Kailyn does not understand other children her own age. She gets very frustrated when they act like typical children and not do puzzles, write names and colour between the lines.

Though with Kailyn we had started seeing the signs at a very early age we chose to put our heads in the sand. Three children on the spectrum brought me to tears often with worry of how we would cope, find services etc. Kailyn has also been diagnosed with Epilepsy and Encopresis. Kailyn is partially toilet trained but due to the encopresis and the need for medication to make her use her bowels it is a daily struggle.

I think the biggest struggle for me personally as a parent is trying to find services and activities for my children. Government funding ends when they are 6 and I often wonder and then what? Timothy is already homeschooled because the education system was failing him. I wonder what next. I wonder about where it will take our family and what the journey ahead will be like. We currently live in a small town in North Queensland and I feel we are being forced to move to a capital city to sit on waiting lists with thousands of other families. The need is so great in Australia that there is not enough services to go around.

The most special moments for me in the past few years have been at Camp Autism. It is so nice to chat with other parents who understand the journey we are on. Its nice to see brothers and sisters of kids on the spectrum hanging out and comparing poo stories or laughing at the silly things kids do. But it breaks my heart to hear of the tears the bullying and ridicule these kids suffer at the hands not only of school yard friends but often of their own family members. Hearing that a smack would cure their brother or sister is not what these kids need to hear.

At times like this journey of raising kids with Autism we should be able to find support in our own family. Sadly this is not always the case. For me Camp Autism has gifted not only myself but my husband and children with a new family. A family of adults and kids who know what the word acceptance means, are always there with a shoulder to cry on , and a joke to make us laugh again. People often thank me for the work I do for Camp Autism, what they don’t realise is how much the camps and the families who attend give back to me. At these camps I am free to be myself and my kids can spin, flap, jump, wriggle, giggle and meltdown without fear of being called horrible names.

Tell your story
and help build Autism Awareness

Money for Therapy

2010-04-22T22:27:00.004+10:00

If you have a child under the age of six and you live in Australia, you may be eligible for up to $12000 to help you access early intervention services like speech and occupational therapy.

To be eligible for the early intervention funding package a child must have been seen by an Autism Advisor and deemed eligible to access the program before their sixth birthday. The $12,000 in funding under the early intervention component can be used until the child’s seventh birthday to a maximum of $6,000 per financial year.

The catch is that you must use approved Early Intervention Service Providers... some of which are listed here: http://fahcsia.gov.au/sa/disability/progserv/people/autism_panel/Pages/default.aspx This may not be an up-to-date, comprehensive list, so make sure you ask your Autism Advisor or local support group for more information (see the list at http://www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html)

To find out more about this and other funding, visit http://fahcsia.gov.au/sa/disability/progserv/people/HelpingChildrenWithAutism/Pages/default.aspx

Jennifer's story (Part 2)

2010-04-21T21:46:00.005+10:00

Jarrod

I have a son with autism and he 4 & 1/2 years old.

He loves playing with his play station game, loves matchbox cars & swimming.

He is really good at counting, play station games & numbers.

He struggles with certain textures, Showing certain emotions & being in busy places.

Sometimes I, as a parent, find it hard when he can’t understand why he can't do certain things, he has no fear which is very frightening at times. Having twins with ASD is also very hard at times.

But then I think about the special moments, like when his memory is awesome, he remembers things back to when he was approx 2 yrs of age. His concern for his twin brother Korbin. He may not show a great deal of emotion, but he certainly looks after his siblings. Or when he compliments his older sister on how pretty she looks.

Tell your story
and help build Autism Awareness

Sandy's Story

2010-04-20T21:47:00.004+10:00

I have 3 sons with autistic traits/tendencies and they are 12 (HFA), 10 (AS/ADHD) & 8 (ADD) years old.

They love us dearly despite what they might say at times during meltdowns, they love computer games of any description including PS2 and wii and the younger two love running around outside with the neighbouring kids pretending to be soldiers, cops or whatever the flavour of the day is.

My boys are really good at avoiding all responsibility where possible, reading, sports (Master 10 & Master 8 especially), eating (except Master 10 who has serious food issues) and playing games on computers, PS2 or wii.

They all struggle with social interaction with others outside of the family and have trouble understanding social cues like personal space and when to talk/take turns at something.

Sometimes I, as a parent, find it hard when they are all being intense at the same time and my husband who has a much shorter fuse than I do goes off at them which only makes matters worse. I struggle to keep my own temper and my voice even at times and also get tired of feeling like I'm the only one who has to play the adult role and be in control of situations constantly. A self-confessed control freak, I get upset when my boys are having a power struggle and I lose my temper and yell at them. I also get frustrated with having to go through the same things over and over sometimes, and with feeling like my boys aren't learning very quickly if at all about behaviours.

But then I think about the special moments, like:

Master 12 had a sudden language explosion at age 3 when he gave us three sentences at once one morning where previously we had only had the occasional word like "Mum", "Dad" and "Car". He has literally not been quiet since and although that can be annoying at times, I would rather he dribbled verbally as a constant than return to a single word occasionally.

Master 10 declaring around age 5 that he liked "plain" pizza... could only get him to try it because I told him it only had tomato sauce on it, then the neighbour told him it had cheese on it, he stopped eating it but not for long. Could see the cogs turning in his mind as I told him he had been eating it for months and the pizza hadn't changed and was still yummy. He eventually overcame his foibles and tucked into a piece, now declaring that he loved "plain cheese" pizza. It has been a struggle to get him to eat all his life as he simply refuses to try new things and has restricted his diet heavily.

Master 8 comes up to me after a violent meltdown, wraps his arms around me and says "I'm sorry Mummy. I love you". All I want to do sometimes is push him away but I can't do that because he doesn't understand as he has little memory of his recent behaviour.

When all of them use the beautiful manners that we have hammered into them and I get complimented on their good behaviour and nice manners, all the while thinking "if you only knew" :)

Any of them proudly handing me a certificate from school or after school care with their name on it rewarded for good behaviour.

The phrases I live by these days include "you are never given in life any more than you can handle" and "only special parents are given the care of special children like ours, as they are the only ones qualified for the job". I am grateful for my own wacky sense of humour as I feel that is one reason I have survived and been able to get up on my board and surf the tide of autism as well as I have, not that I claim to be any kind of an expert. I am also grateful to my husband for being as supportive as he knows how, and for acknowledging both his and my ASD tendencies and making light of them, as it all helps make our unusual world go round.

Tell your story
and help build Autism Awareness

Rainbowland Autism Services

2010-04-19T23:51:00.008+10:00

Listening to parents share their stories about their children who have autism we can recognise two key things:

Their children are loved and enrich the lives of their families
Their children - and the attitudes of others around them - can present daily challenges that can be physically exhausting and emotionally draining.

Families and their children with Autism need support. Sometimes this comes free through informal support networks. But many important services are expensive and not always accessible.

Rainbowland Autism Services

Parents are advocates for their children. But who will advocate for families when they feel disempowered, exhausted or unsupported?

Rainbowland Autism Services states that they are:

“a modern, innovative and energetic organisation that demonstrates its passion for helping families living with autism through its dynamic services and commitment to global autism awareness. RAS strives to advocate for the human rights of families and promote community awareness and inclusion at every opportunity."

One Campaign

One Campaign that has been driven by Rainbowland Autism Services is the campaign for families of children with developmental disabilities to be eligible for disability parking permits. Listen to this video clip to find out why this is so important. Especially listen to Jacob and his family's experiences in the carpark (starting from about the 2 minute mark).

Autism Rainbow Day

But one of the biggest campaigns is the current campaign to build Autism Awareness globally. It is not about raising money, but raising awareness.

The key event of this campaign is on the 30th of April. This has been nominated as Autism Rainbow Day.

On this day businesses, schools, social groups are being asked to build autism awareness by wearing a plain coloured t-shirt. In their press release they state that the colours are to represent the colours of the rainbow - and the autism spectrum.

To support this awareness campaign, follow these simple steps:

Join the Autism Rainbow Day Facebook Group
Download your Rainbow Day Poster - print it and hang it everywhere.
Tell your school and workplace about it - and hang more posters.
On Friday 30th wear a plain coloured t-shirt (and keep a few in your car to share with those who have forgotten :) )
When people ask why you are wearing bright colours, tell them about Autism. To help you with this, Allison has put together an Autism Awareness Sheet which you can pass on to people. *

It's that simple!

So get out there and spread awareness :)

--------

* You could also use the Learn to be Buddies Awareness sheets:
The Underlying Difficulties - and Strengths - of Autism
Understanding Autism Spectrum Disorders

Allison's Story

2010-04-18T11:25:00.003+10:00

Kristie with Kelly Nester (Adelaide Newsreader)
at the Autism SA Masquerade Ball

I have a daughter with asperger’s syndrome and she is 11 years old.

She loves music more than anything else in the world. Every day she focuses on her singing and is pretty talented.

She is really good at singing and art. Kristie also painted the picture for the Autism Rainbow Day logo.

She struggles with language and gets anxious very easily. She also has difficulties reading other people’s body language and often thinks others don’t like her when they actually do.

Sometimes I, as a parent, find it hard when she misinterprets what is being said to her, which makes her sad. It is also difficult when she struggles with her school work because she becomes anxious to give something new a go, but she works very hard to overcome these problems.

But then I think about the special moments, like when she sang in front of 360 people at the Autism SA masquerade ball in October 2009. She was amazing and performed like a professional. It was one of those very special and proud moments as a parent.

Her performance:

I love her dearly and when she smiles, she lights up the room. Kristie is our little princess and we love her dearly.

Tell your story
and help build Autism Awareness

The Toy Bug: Educational Toys

2010-04-17T18:31:00.008+10:00

Getting appropriate therapy and help for your child with Autism Spectrum Disorders can be very expensive, hard to access or can be complicated by your child's difficulty working with relative strangers outside the home.

So what can you do? One thing you can do is to find toys and games that you can use at home to help teach or reinforce skills that speech and/or occupational therapists would be teaching. This perhaps doesn't replace specialist help, but it can make a significant difference to your child's development.

The Toy Bug

The Toy Bug is an online store started by Jo (whose son you met in our last post). She started this store as a result of her own efforts to locate toys used by her son's therapists, or toys that could keep Lachie's attention and help with his development. Her aim is to ensure that other parents benefit from her experience and efforts.

In short, Jo has done the hard work for you. You just need to pop over to her site to scroll through her range of toys and equipment to find what may best suit your child's needs.

Here are some places you might be most interested in looking at on her site:

Lachie's favourites: I love this as it provides some hints about what a child of his age and characteristics might find most enjoyable.

On Sale: Because we all love a bargain :)

Reward Charts and Planners: Routine and explicit, visual clarification of routines and expectations are so important for children with Autism Spectrum Disorders. These charts and planners are a great resource - and could be used in homes and in the classroom.

Books: Because she sells Dave is Brave :)

Donations for Camp Autism:

If you are looking for educational and sensory toys, then there is an added incentive to buy from the Toy Bug. The Toy Bug is donating 10% of its April sales to Camp Autism, an organisation that runs holiday camps for families and children with autism.

(Camp Autism website ... a post about this coming soon)

Jo's Story

2010-04-16T19:19:00.003+10:00

Lachlan

I have a son with Autism and he is 6 ½ years old.

He loves reading, numbers, puzzles, board games, swimming, going to the park and mum and dad.

He is really good at reading, math, giving hugs and has wonderful manners.

He struggles with noise, too many people, change without being informed way ahead of time, taking a different route to a place he often goes to (like school) and the most scary of all running away from us when out in public and having no fear of cars.

Sometimes I, as a parent, find it hard when people don’t have the understanding or awareness of Autism like when you are out in public and your child has a major meltdown and people stare or you hear comments about naughty children or when people do not understand that you cannot go to a specific outing as there are too many sensory issues for your child to hope with.

We recently went to a friend’s place for a BBQ and there were about 25 people there and we only lasted 10 minutes before our son had a major melt down due to the number of people and the noise. We were unable to calm him down so we had to go home and some of the people where like “what, you are going just because he is screaming” – they had no idea how hard it was for him. So as you can tell we don’t venture out much but I am hoping one day we might get to Australia Zoo or Sea World.

But then I think about the special moments, like when the children in his class could not believe how well he can read and they love him helping them with their reading.

When people compliment what lovely manners our son has – like when he greets someone at the checkout and says Hello …their name (that he reads from their tag), my name is Lachlan, how are you today? And that person is taken by surprise that he knows what their name is. Or when someone sneezes (no matter whom it is) and he says “Bless You”, and when they thank him he says “You’re welcome”.

When he comes and give you the biggest hug and says, "Hug to make you feel happy".

Tell your story
and help build Autism Awareness

No Pity Please

2010-04-15T23:00:00.005+10:00

Through My Eyes

Music by Fiona Johnson.
Words by Valerie Foley.
Sung by Thanh Bui

".... I don't need pity
I don't need tears
I just need someone to help me
Understand my fears

Show me you believe in me
Let me know that I'm OK
Help me feel safe in the world
And I will find my way

Because I'm not blind but I can't always see
I'm not deaf but things can sound strange to me
I'm not trapped but it's hard to feel free

Imagine what it's like to be me."

The recording of this song was made possible through the generous support of Thomas and Friends and HIT Entertainment.

Autism Spectrum Music ... Posted on YouTube August 17, 2009

This song is aimed to build awareness of what it might be like to live with an Autism Spectrum Disorder. It is available for download on iTunes Australia and all proceeds to Autism Spectrum Australia (Aspect) .

A blog post about helping peers empathise... not sympathise or take pity on... with children who have differing abilities.

Michelle's story

2010-04-14T21:50:00.005+10:00

Brayden

I have a son with autism and he is almost 10 years old.

He loves anything involving super heroes & special powers but only the goodies ! He loves Pokemon, Transformers, Bionicles, Bakugan and every super hero from Astro boy to Sonic the Hedgehog !

He is really good at construction, give him lego or Knex and he will build things out of his head that amaze me !

He struggles with school and controlling his temper, he doesn’t like noise around him or too much stimulation or being asked to ‘join in’.

Sometimes I, as a parent, find it hard when he gets out of control and I have to physically hold him down and when he gets sent home from school before 10am, and when he says horrible words to me out of anger.

But then I think about the special moments, like when he has learnt something new or had a good morning at school and comes home beaming with pride, when he sits and hugs me and tells me that he loves no one else as much as he loves me !!

Written By Michelle (SA)
Mother of Brayden (ASD ADHD)

Tell your story
and help build Autism Awareness

Finding services

2010-04-13T21:58:00.008+10:00

I was just listening to some parents who were trying to find services and supports for themselves and their children with Autism Spectrum Disorders. The consensus was that the most effective way to find what they needed was not necessarily through web research, but through word of mouth. That is, by talking to other parents and finding out what they have found most useful.

Finding other families

If you are looking for people who know a bit about the services in your area, then the best place to start is with support groups. But how can you find a support group in your area?

On the web:

Specific support groups I know about, or have been told about:

A 24-hour hotline: Autism Advisory and Support Service

Rainbowland Playtime (Grenwith, South Australia)

Hunter Connect (Medowie, NSW)

The Autism and Aspergers Support Group Inc (Sydney area)

Hunter Valley ASD Support Group

Playconnect: Playgroups for families with children who have or may have ASDs

Call your State or Territory Playgroup Association on 1800 171 882 (toll-free) for information or search...

ACT contacts

NSW Playconnect groups

NT playgroups (not clear if they have any playconnect groups at this stage, but give them a call to clarify.

Queensland Playconnect

South Australia Playconnect

Tasmanian Playconnect

Victorian Playgroups (including supported and playgroups for children with special needs)

Western Australian Playconnect

Places to find more support groups:

Autism South Australia's listing of support groups

Autism Queensland's listing of support groups

MyTime support groups

And here is an Aspect document that may be useful:

AUTISM SPECTRUM DISORDER SUPPORT GROUPS – NSW Last updated -

If you have a support group you would like to share, please post it in a comment or contact me and I will add it to this list.

Zoe's story

2010-04-12T20:40:00.002+10:00

Harley and Brodie

I have two sons/with ASD Harley is 14 and Brodie is 11.

Harley loves playstation and Brodie loves swimming at nans, swinging and the computer..

Harley is really good at playstation, online computer strategy games and technology. Brodie is really good at giving kisses to his mum, swimming and going away on holidays

Harley struggles with organization skills, getting off the playstation, doing his chores and the unknown. Brodie struggles with speech/communication, frustration, challenging behaviours and eating non food items.

Sometimes I, as a parent, find it hard when an outing goes pear shaped, when I have to find things to do that suit both my childrens needs, when people comment and stare.

But then I think about the special moments, like when Brodie said mum and nan (his first and only words) and when Harley's got a fantastic first high school report after his last primary school telling me he would never cope with high school. But especially when my mum and I flew with both boys to Detroit, LA and Hawaii and we coped and the boys coped and we had the holiday of a lifetime! x

Tell your story
and help build Autism Awareness

Can You Help? Running the Marathon of Autism Campaign

2010-04-11T22:44:00.003+10:00

Felicity

Running the Marathon of Autism
By Amy Costin

With April being World Autism Awareness Month it is the perfect time to launch our Running the Marathon of Autism campaign in aid of my little girl, Felicity's, Son-Rise Program (run by The Autism Treatment Center of America) that is day by day taking us closer to recovering her from her Autism!!

Felicity is a full of life 9 year old who has a beaming smile and one of the cheekiest giggles you'll ever hear. Felicity has Autism and cannot yet talk but has a few simple words such as "up" and "mum". Before starting her full time Son-Rise Program Felicity was unable to communicate to us that she was hungry, tired or that she needed to go to the toilet. She would sit by herself most of the time and stare 'into space'... but in just a short time after we began the Son-Rise Program, Felicity 100% toilet trained herself and now loves to be around people. Felicity understands everything that is said to her and willingly gives out hugs and smiles to those around her.

What is Running the Marathon of Autism about?

In 2006 a close family friend, Maryke, ran the Melbourne Marathon for the first time ever - Maryke, mother of 2, who claimed "it was tougher than giving birth," did the mammoth 42km run in the name of Felicity and was sponsored along the way to raise some of the necessary funds needed to keep Felicity's Son-Rise Program going.

This year, Maryke and 4 other amazing women Carley, Jocelyn, Sammy and Nicole, are all currently training in 'marathon proportions' for a variety of major events. These events include the 14 km Sydney City 2 Surf, the 21km Sydney 1/2 Marathon and the 42 km Melbourne Marathon. These inspirational runners who are taking on this challenge are not professional athletes, nor are they seasoned runners. They are women who are mums, work full time jobs and have children of their own but they all have one common passion - Felicity and the amazing milestones she has accomplished since starting her Son-Rise Program 4 years ago.

What is it raising money for?

The Son-Rise Program is sadly not available in Australia. It is run by The Autism Treatment Center of America in Massachusetts and involves at least 4 week long training courses which we, as Felicity's parents and her Son-Rise Program 'directors', need to attend to maximise the potential of Felicity's full time program that has so far seen Felicity prove doctors and other medical 'professionals' wrong. These courses obviously cost money which we rely heavily on fundraising for.

Why is this important?

Felicity has come so far since starting her Son-Rise Program and is the happiest we have ever seen her. We believe that the Son-Rise Program is the right thing for her and even if the amazing milestones she has reached so far are the only ones she ever manages to accomplish her happiness is the most important thing to us and in The Son-Rise Program she has found that.

To find out more about Felicity, the amazing women running for her and The Son-Rise Program as well as ways you can support this campaign by donating please check out our website at: www.intellectualdisability.org
You can also join us at Facebook: www.facebook.com/Marathon4Autism
and Twitter: www.twitter.com/Marathon4Autism

Lisa's story

2010-04-10T20:50:00.006+10:00

Zoe and Anzac

I have a 4 children 5 yrs and under. My daughter, Zoe (5) and son, Anzac (3) have been diagnosed with autism spectrum disorders - PDD-NOS and Autism. My 3rd child, Zannalee is in the process of diagnosis.

Zoe loves craft & drawing (the same thing 100 times) and Anzac loves riding his scooter & bouncing on the trampoline.

Anzac is really good at number recognition, and Zoe is really good at drama, and playing out roles she has seen in a movie.

They both struggle with social interaction, when a word has 2 different meanings, receptive and expressive speech, and many other things, but lets try and keep this positive! - i won't list them all!!

Sometimes I, as a parent, find it hard when I am out in public and people just presume that they are being 'naughty little brats'.

But then I think about the special moments, like when they use their impeccable manners , Zoe made a FRIEND this year, and her friends mother has invited us to some over for play dates!!!

Tell your story
and help build Autism Awareness

Bride's story

2010-04-09T15:21:00.008+10:00

Chayton

I have a son named Chayton with asd, global developmental delays and food phobias and intolerances and he is 4 1/2 years old.

He loves Thomas the tank engine and anything that has a motor and wheels. He is brilliant with numbers and just loves to play car racing games on the computer or playstation.

He is really good at numbers - anything to do with them really!! He is adding and subtracting and can count to 100.

He struggles with social skills and gross motor skills. He also has not yet been toilet trained although we have been trying since he was 2. But we just keep trying in hope that he will understand it one day.

Sometimes I, as a parent, find it hard when people see him melting down and they stare and tell me to control my child!! It infuriates me because my other 3 kids are there and they are not behaving in that way, so it isn't my control - it is his control which he has no control over!!

I do struggle daily with Chayton with food as he has a lot of food intolerances but also suffers food phobias as well and currently he survives on chicken nuggets and chips, pizza, choc chip cookies and peanut butter toast. I just would like family friends and other people in society to have more tolerance and understanding for them as kids, but also for the parents as it takes a lot to raise our children - but we love them even more in a lot of ways as they are very special.

But then I think about the special moments, like when Chayton first started talking at 3 and then when he first said I LOVE YOU MOMMY - that really made everything worth while! And just for him to run up to me and give me a big hug and say, "Are you happy at me mommy, cos i love you!"! It really just tugs at the heart strings and makes everything a lot brighter.

When Chayton started Prep this year was a big milestone for us and he is settling well and loves his teachers and the smile on his face when you pick him up in the afternoon is priceless!!

Tell your story
and help build Autism Awareness

Autism and Imagination

2010-04-08T21:50:00.014+10:00

Imagination is an important part of life. When reading about Autism Spectrum Disorders you might read about it as "cognitive flexibility" (ASPECT, 2002)

It is an important part of playing, learning and interacting with others. Imagination helps us understand abstract concepts, problem-solve and empathise with others.

Autism and Imagination

The National Autistic Society state:

"Social imagination allows us to understand and predict other people's behaviour, make sense of abstract ideas, and to imagine situations outside our immediate daily routine."

It is this form of imagination that children diagnosed with Autism Spectrum Disorders (ASD) find most difficult. The following are some of the key skills associated with social imagination.

Theory of mind

The technical definition of theory of mind goes something like this:

“Theory-of-Mind (ToM) is the social cognitive ability to attribute mental states to oneself and others and to use these attributions in understanding, predicting and explaining behavior of others and oneself.” (Blijd-Hoogewys, Geert, Serra & Minderaa, 2008)

In simple language, it is about the ability to empathise and evaluate how our behaviour is effecting others. As Blijd-Hoogewys et al suggest, it is a core skill in being able to interact in a socially acceptable way. Without it, children mostly act egocentrically. This means that they interact with others according to their needs and wants without identifying how their actions may effect others.

For children who are "neurotypical" (ie. don't have an ASD), the ability to empathise and evaluate how their behaviour will effect others starts to be evident in their interactions around the age of four. This is also the time when they start to develop friendship groups.

A child with ASD will be able to learn this skill, but will it not develop at the same rate or in the same way (Blijd-Hoogewys et al., 2008; Gartrell & Gartrell, 2008; Miller, 2006). This means that while they want friends, their difficulty in imagining how others are feeling, or imagining how their behaviour might effect others, means that they often do not develop friendships in the same way. Instead, they may become a little isolated as they struggle to behave in ways that are considered appropriate.

Interests

Because of their difficulty with social imagination, children with ASDs often have a narrow set of interests (ASPECT, 2010). They may find it difficult to communicate or learn about things outside this interest. They may also struggle to play games that don't fit with their interests.

Imaginative play

Many social skills are learnt through participation in imaginative play. For example, whilst playing "mummies and daddies" children are learning to communicate effectively, share and practice the different roles and activities relevant to everyday life. Children with ASDs may struggle with unstructured imaginative play because there are no set, repetitive rules for that type of play (The National Autisitic Society, 2010). It requires a lot of social imagination.

So the one type of play that could help children learn social imagination skills is often the type of play that children with ASD don't voluntarily get involved with.

Change and new experiences

Imagine this:

You have just woken up. You look around an there is nothing familiar in your environment. You aren't at home. You don't know the people you see. They are speaking a language you don't understand. They are acting in ways that don't fit with what you have come to expect from people. The weather is different to anything you have experienced before. There are noises you don't recognise. You don't know where you are.

How would you feel? Disoriented? Home-sick? Teary? Scared? Frustrated? Angry?

You feel these things because you can't predict what might happen next. You can't use any of the information you have gathered from your other life experiences to help you because everything is so foreign. You feel like things are spinning out of control. You end up with what we might call "culture shock", or an emotional and sensory overload - which can lead to anything from depression to significant anxiety.

And this is what it must be like for a child with Autism.

If you struggle to "imagine" and relate past experiences to new ones whenever a routine changes, or you go to a new place, you could experience a meltdown. Not because you are "being naughty," but because you are overwhelmed.

Danger

As the National Autistic Society (2010) mention, another skill that social imagination gives us is the ability to recognise the possible consequences for our actions. Not only in the context of how our behaviour effects others, but also how it might effect ourselves.

In short, we need social imagination in order to identify and manage risk.

As you will read in some of the parent stories that I will be sharing with you this month, one of the things that families often struggle with is getting their child with Autism to stay close. If a child does not realise that running away means getting lost, maybe getting hurt on a busy road or maybe being hurt by strangers - then they are less likely to stay close to mum or dad.

The child is not necessarily running away from mum. More likely they want something (like that favourite toy in the shop window), want to avoid something (like too much noise) or be struggling to wait while their parents get their jobs done.

This doesn't mean these skills can't be learnt

As a mummy blogger noted in her post about 10 common autism myths, just because a child has difficulty with a skill doesn't mean they can't learn it. It just takes more work. It is important that we focus on children's strengths and build on this.

Repetition and modelling

To help children with ASD get involved in imaginative play, we could use structure and repetition. For example, we can model a sequence of steps for the child to imitate to participate in pretend play. Like pretending to cook, or put a doll to bed, or drive a pretend car and so on.

Social stories

To help children predict what might happen as a consequence of certain behaviours, social stories can be used. I have discussed these in a previous post.

Just remember:
Don't judge, support and love
Use their skills and learn they will!

References

Aspect (2002). Thinking and Learning in Autism. www.aspect.org.au/publications/Thinking%20and%20Learning%20in%20Autism.pdf

Aspect (2010). What is Autism? www.autismspectrum.org.au/a2i1i1l237l113/what-is-autism.htm

Blijd-Hoogewys, E.M.A, Geert, van AEPLC, Serra, M., Minderaa, Æ R. B. (2008). Measuring Theory of Mind in Children: Psychometric Properties of the ToM Storybooks. Journal of Autism Developmental Disorders, 38, p1907–1930

Gartrell, D., and Gartrell, J.J. (2008). Guidance Matters: Understand Bullying. Young Children, 63(3), p54-57.

Miller, C.A. (2006). Developmental Relationships Between Language and Theory of Mind. American Journal of Speech – Language Pathology, 15(2), p142.

The National Autistic Society. (2010). Autism: What is it? www.nas.org.uk/autism

Autism and Aspergers Support Group Inc

2010-04-07T19:57:00.015+10:00

We heard Chantelle's story of her two beautiful children... Chantelle is also the Vice President of the Richmond Executive Commitee of the Autism and Aspergers Support Group Inc.

Who are they?

Operating since 1998, this support group is run by volunteer parents. On their website they state:

"Our ideals were - and still are - for parents, carers, and individuals to come together to help and support each other by sharing stories and to give or seek advice. We welcome all new members - families and/or individuals - who wish to come to our Support Group meetings, our organised events and activities and our social groups."

What do they do?

They meet monthly in Richmond and Burwood, NSW. At the meetings they have guest speakers, or "a general chat where we can bounce ideas off each other and realise we are not alone." They have hosted Professor Tony Attwood, who has done much research into Aspergers Syndrome and related therapies. Wendy Lawson is also a patron of the group.
They provide information about other support services in the area, including social groups for teens, playgroups and so on. See their web page for more information on this.
A well stocked library for members
A member newsletter with personal stories, "what's on", contact details of other groups etc.

How to become a Member

Membership is $20 per year. This gives you access to the library (including our soon to be added DVD of the March 2010 Professor Tony Attwood 2 day conference) and discounted entry fees when applicable to guest speakers. You will also recieve the monthly newsletter.

To find out more visit their website or facebook group.

Chantelle's Story Part 2

2010-04-06T17:06:00.007+10:00

Hunter and Jackson

I have a son with autism and he is 2 years old.

He loves Sam, Murray, Anthony, Geoff and Captain Feathersword almost as much as he loves his brother, his daddy and me. I suspect he would also LOVE to ask Dora to be his girlfriend.

He is really good at puzzles, waiting for his turn, making Mummy laugh and giving soft little kisses.

He struggles with sensory issues like loud noises, crowds and playing with other kids.

Sometimes I, as a parent, find it hard when I feel torn in two. I also have an older son with Autism and both boys cope differently with social situations and change of routine. Hunter is so much more quiet in his approach to everything and much of our family’s time is focused on my older son who is more rambunctious and likely to meltdown.

I know in my heart of hearts that Hunter is struggling in many situations too but because he struggles silently he is often second on the list. He is second born, second to be helped into the car, second to have a turn and second to be cuddled when he’s having an anxious moment if his brother is noisily having one too. He is not second in my heart though. My heart is big enough for the boys to share equal space and love and it’s apt that that’s where my love for them lives as my heart often breaks in two for the enormous journey they face throughout life.

But then I think about the special moments, like when we recently went to a concert friends of mine in a country music band called The Rough Diamonds were doing to raise money for Autism Awareness.

Hunter had been in meltdown mode and very avoidant of all the noise and overwhelmed at the crowd but then our friends broke into a song that he instantly responded to. It was like he understood the words being sung and he calmed down straight away, smiled his big gappy toothed grin at me and climbed on my knee where danced holding my hands and giggled whilst I sung along (badly). The song is called “Free To Be."

As I listened to the lyrics, “I just wanna be free to be me & smile. Just leave my worries far behind & I’m gonna hold my head up high, feels good to be me. I’m gonna be free to be me & smile. Be true to who I am inside. Kick up my heels & enjoy the ride. Just want to be free, it’s time to be free, yeah free to be me. Feels good to be me.” I couldn‟t help but smile & feel emotional about the perfect fit this song is for my Hunter.

When I think about that moment looking up at his smiley face, into his enormous chocolate brown eyes whilst he danced on my knee to that song, I feel like he just might have enough innate wisdom and understanding of his own journey that he will be ok.

More about Chantelle and her family's journey with Autism can be found here: http://myspecialstorybooks.blogspot.com/

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Chantelle's story

2010-04-05T14:05:00.004+10:00

Jackson: A Memorable Moment at the Easter Hat Parade

I have a son with autism and he is 4 years old.

He loves Tom & Jerry, Scooby Doo, climbing trees, all of his friends at preschool and me.

He is really good at kicking goals into his soccer net, helping me stir the cake mixture when we cook together and giving big squishy cuddles.

He struggles with noisy environments, transitions, trying new things for the first time and remembering to always stay near Mummy when we go out which is terrifying as a parent as I honestly feel like I cannot keep him safe.

Sometimes I, as a parent, find it hard when I think about what the future holds for Jackson. At the moment we are choosing a school for him to start at next year and it feels like there is no place he will fit with regards to the education system. Then of course I dare to think about what happens after school and wonder what sort of job he will have, if he will have a girlfriend, will he be invited to parties and most of all, will he be happy?

When every single thing that is new or out of a routine causes anxiety for your child, it really makes you wonder if they can be happy. I lay awake at night thinking about that most. I can take the meltdowns the fighting for every scrap of funding thrown our way, the numerous appointments, the stares of ignorant strangers if an outing goes pear shaped and I can even take the enormous financial burden on the family. It’s the happiness factor that keeps me awake.

But then I think about the special moments, like when Jackson participated happily in his Easter Parade last week, surrounded by friends and loudly exclaiming his love for me during the stroll down the preschool catwalk….. Well when I think about that moment I am filled with a love and a joy indescribable even for me, who as a writer, should be able to describe anything in words. This moment was too big for adequate words. I tried hard to put it into words though over at my own blog and I invite you to take a look at many joyful moments we’ve had together over there: http://myspecialstorybooks.blogspot.com/

Please find an extract of the Easter parade post right here:

So there we were, sitting front row and centre waiting for the Easter parade to start and I will admit to having my usual knots of nerves as I so hoped it would turn out well and not just for me and any need I have to see Jackson do the "right" thing, more for Jackson so he could enjoy the parade like the other kids and for once feel comfortable and happy even though it was a change in his routine.

Jackson's turn came finally, my video camera was poised and ready to go just in case it was a hit and not a miss..... Will he do it? Won't he do it? No one around me would have seen the inner encouragement I was trying to physically send out to will my little guy on and help his anxiety stay at bay so he could just walk down the path holding Annabelle's hand and walk back again. I'm talking about possibly a maximum of twenty steps. Just twenty little steps so many parents would have no understanding of the difficulty those steps would consist of for my Jackson. Twenty steps of sheer terror for many children with Autism and although twenty steps sounds like such a small task, our world is one of only EVER taking ONE step at a time. It's like the Autism Mum mantra I think.... We probably all have the same mantra in our heads for any occasion, any day, any task, any achievement.. anything. One proverbial and symbolic step at a time...

Yet here I was hoping for twenty actual steps. With the expectation of him overcoming the possible sensory issue of the bunny ears. With the expectation he was to hold Anabelle’s hand and guide her along for the twenty steps too and with the expectation he would be fine with all the clapping which is another sensory concern for him from the parents and teachers as they encouraged each child through their twenty steps.

Time to take the first step.......

Huge smile, Anabelle's hand delightedly in his own and off they went. I'm teary recollecting it now. "Hello Mummy!" he called as he competently passed me by on his twenty steps of pure unadulterated bliss for all to see and experience with him. Step ten or so was time to turn around and he paused. A look sideways to the grass beside the path of the parade...... He bent down and found the only yellow daisy in a big patch of green, plucked it from the ground turned around to take the return journey to the class and proceeded to rush over to me again with pretty, sweet, patient and kind little Annabelle still in tow (sporting the most open and giving smile of her own too). Jackson handed his freshly picked yellow daisy to me and I'm being generous by not calling it by it's rightful name of a weed.... but it was simply the most exquisite weed I have ever seen. He looked at me squarely in the eyes, shared a moment just for us in a crowd of many others and said in his ridiculously loud voice, "I LOVE YOU SOOO MUCH MUMMY." I responded through my predictable and joyful tears that sprang up from my always aching heart..... "I love you too Jackson, thank you baby boy."

I am brought to you today by overwhelming joy, happiness, pride and love. Oh did I mention love? My heart is busting with overflowing LOVE! A happier Easter I could not wish for after today's Hat Parade ...

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Autism Spectrum Australia

2010-04-04T11:22:00.006+10:00

I want to take some time this month to build awareness about the organisations and groups who provide support for families of children with Autism.

Autism Spectrum Australia: ASPECT

ASPECT state on their website that they are Australia's "largest not-for-profit autism specific service provider." They provide many services for families of children with Autism.

Information
You can start learning about Autism by visiting ASPECT's information pages. However, it doesn't stop there.

They also have an information line which you can call to get information and advice. They can advise you on anything from diagnosis to finding services for your child.

If you live in NSW, Australia, ASPECT can also help you understand and navigate through the process of applying for early intervention funding.

Diagnosis
If you are concerned about your child's behaviour or development, but don't yet have a diagnosis, you can complete an online questionnaire on ASPECT's website to give you an idea of whether you should be looking for a diagnosis of an Autism Spectrum Disorder. ASPECT also provides a team who can make a diagnosis.

Early Intervention
Once a child is diagnosed it is important to start building their skills as soon as possible. One of the services that ASPECT provides is an Early Intervention Service called Aspect Building Blocks.

Workshops and Family Support
Aspect also run workshops for families and professionals. They also coordinate a parent support network.

Specialist Schools
Aspect also run a number of specialist schools and classrooms. For example, in the Hunter Region (Newcastle, NSW) there is one specialist school and five satellite classrooms located in other private or public schools.

And there's more!
Aspect provide many more services for children, youth and adults. So make sure you explore their website further. They may have something that either you or someone you know might benefit from.

How you can help:

Aspect is a not-for-profit organisation. Like any such organisation, they are always in need of money to keep their services affordable for families. Please consider making a donation to help them expand and continue their invaluable service.

...

Contact me if you have a service, support group or fundraising effort that you would like me to write about this month.

Autism, Meltdowns and Sensory Sensitivities

2010-04-03T21:58:00.007+11:00

In Jennifer's story about her son Korbin she mentioned the struggle she had in dealing with the looks, comments and lack of understanding about her son's behaviour, particularly when he has a "meltdown."

What is a meltdown?

A meltdown can look like a tantrum. When a child with Autism is having a meltdown they may:

scream or yell
cry
fall to the ground and roll/kick
rock back and forth
hit and kick
flap their hands
freeze/become immobile

It may go on for a long time, and it will probably continue until the child adjusts to what is causing them distress, or until they are removed from the environment or thing that is causing them distress.

What can cause a meltdown?

A meltdown can be caused by a range of things that a child with Autism may struggle to cope with. However, one of the key issues that can lead to a meltdown is sensory sensitivities.

As Autism Spectrum Australia (ASPECT) state, children with Autism can be over or undersensitive to the tastes, sights, touch and sounds that are part of our everyday life. The increase in unfamiliar sounds and sights in a public place can become overwhelming, and the experience so painful for the child, that they can only get relief in the same way any other child would if they were in pain - by screaming, crying, rocking or any other behaviour that helps to comfort them. And this will not stop until the source of the pain is removed.

To further help you understand this, and possible ways to manage sensory sensitivities, please read this great article by RelateToAutism. They have a great picture that helps to explain the sensory challenges a child with Autism may face.

Also, for a fuller explanation, read the information sheet by ASPECT.

Just a note: Not every child with Autism will experience the same difficulties. Every child is an individual.

Is the child just being naughty?

Would you call a child "naughty" if they were screaming in pain? Would you think of a child as "misbehaving" if they were pushing, flapping, kicking due to fear and anxiety?

Try and put yourself in their shoes... here's a video clip that may help you do this.

So remember...

Next time you see a mum or dad struggling with a child who is screaming, flapping, crying... ask yourself, how would you feel?

Don't judge and stare, ask "What if it were me there?"

Jennifer's story

2010-04-02T15:48:00.006+11:00

Korbin

I have a son with autism and he is 4 and 1/2 years old.

He loves building with lego blocks, Bakugan Balls, Transformers & All super heros.

He is really good at any building things, such as robots and spaceships with lego.

He struggles with speech & general day to day skills that we take for granted.

Sometimes I, as a parent, find it hard when we are out in a public place and he is having a meltdown and the looks we get from passers by, or people's comments and saying he is just being a naughty boy. Or family & friends not understanding the full extent of autism.

But then I think about the special moments, like when he is laying beside me and I am pretending to be asleep and he will rub my arm with so much affection, or out of the blue he will say "I love you"

Jennifer

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