Parenting Children with Autism

A Survey

For April Autism Awareness month in 2010 I invited parents to share their stories on my blog.  13 parents told me about 19 children. As my unfortunately belated contribution to April Autism Awareness (my excuse being a 3 month old bub :)) I thought I would share with you a collation of common responses.

Strengths

When asked what their children loved, the top 5 responses were:

1. Technology such as computer and playstation games

2. TV or cartoon characters such as Superheroes, Thomas the tank Engine and Scooby Doo.

3. Their family

4. Gross motor activities like climbing and swimming.

5. Numbers – counting, arithmatic and reading them.



When asked what their children were good at, the top 5 responses were:

1. Using technology

2. Reading

3. Numbers (counting, arithmetic)

4. Gross motor activities

5. Affection (cuddling, kissing family)



When asked to recount a special moment, the most common response was about hearing their child say “I love you”. Others told of achievements such as a good report from school, a first invitation to a play date, first words and a successful holiday.

 

Difficulties

 
When asked what their child struggled with, the top 5 responses were:


1. Social skills - such as taking turns, joining in games with others, reading body language and understanding others’ perspectives.

2. Speech and/or language.

3. Noisy and busy environments.

4. Change, transitions and new experiences.

5. Running away or showing no fear of danger.

 

The Challenge of Parenting a child with ASD

 
Another question I asked parents was about the things they themselves struggled with whilst parenting their child or children who have ASDs. The most common response was that they struggled with the attitudes of strangers towards their children. They talked about the lack of understanding of their children’s needs, especially with regards to behaviour.


For example, several parents wrote about outings “going pear shaped” as their child had a meltdown whilst trying to cope with a new environment. They received comments from strangers – and sometimes friends and family – suggesting that the child was simply being naughty and stronger discipline was needed.

Another common theme was the difficulty in balancing the needs of multiple children in the family when one or more of those children have an ASD. One parent explained that they felt bad that their “quieter” child often did not receive as much attention as their other child whose overt behaviour needed more immediate and constant attention.

The other top 3 responses to this question included the difficulties in finding funding and services, seeing their child struggle with or be sent home from school, and coping with aggression and/or meltdowns.

 

For more information on what this means, and some strategies, you can purchase an information article for AU$2 using the button below.

For other articles, children's stories and information on bullying, visit:

http://www.learn2bebuddies.com.au/

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Surviving difficult behaviour

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:

 

1. Am I realistic about what behaviour I might encounter tomorrow?
2. Am I approaching tomorrow with a positive attitude?
3. Have I set priorities and scheduled my time?
4. Am I eating well?
5. Am I exercising?
6. Am I having enough rest?
7. Do I have a hobby?
8. Am I flexible and adaptable?
9. Am I keeping my sense of humour?
10. Am I giving myself permission to feel tired/angry/sad/other?
11. Have I debriefed with a friend/colleague/partner/parent?
12. Have I come up with ways to deal with the cause of my emotion?
13. Am I recognising and accepting things I can’t change?
14. 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.

 

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Dealing with the anxiety of going back to school

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:

1. 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.
2. 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.
3. 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.
4. Be organised:  Use containers, checklists, flow-charts to help children be organised and know what is coming up next.
5. 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.
6. 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.

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Parent stories: Different types of anxiety

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.

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Ask Amanda - Dealing with anxiety

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.

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Learn2bebuddies in 2011

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....

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Helping Children Problem-solve

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

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