Chantelle's story

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 ...

my story our story

myspecialstorybooks.blogspot.com


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Autism Spectrum Australia

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.

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Autism, Meltdowns and Sensory Sensitivities

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?"

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Jennifer's story

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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Amanda Asks: Autism Awareness

Instead of the usual Ask Amanda post, this month I am starting with an Amanda Asks column. And it is all due to the fact that April is Autism Awareness Month.

Autism Awareness Month

It all began with the Autism Society of America declaring that April would be Autism Awareness month. They have been pushing for Autism Awareness through April Awarenes month since the 1970s.

But this year is the first year that I have joined in the celebrations. This is primarily because up until this year I have been unaware that April is a good time to talk about Autism.

Amanda asks parents

I want to help build awareness by providing the opportunity for parents to tell their story - to celebrate their children who have Autism, and to talk about the challenges. I want to do this by asking parents to complete the following sentences, then emailing it to me at amandag at learn2bebuddies.com.au:

I have a son/daughter (delete the irrelevant option) with autism and he/she is .... years old.

He/she loves......

He/she is really good at ....

He/she struggles with ....

Sometimes I, as a parent, find it hard when .....

But then I think about the special moments, like when ... (tell us about something great that has happened - an achievement, a hug, a word, a moment that has encouraged you).

Please note: By sending your completed story to Amanda Gray you are giving permission for it to be posted at http://www.learn2bebuddies.blogspot.com during April, 2010. Names won't be used unless the you give permission, and then only first names will be used.

If you want to share a photo, you could either use a picture of your child showing their face, or one where you can't see their face... perhaps take a picture from behind as they play their favourite game. Please note that by providing a photo you are giving permission for it to be publicly displayed on the abovenamed blog. Please do not include a photo if you do not agree to this.

Feel free to contact me if you have any questions.

Amanda Asks Support Groups:

I also want to share information about what different support groups are doing to help spread Autism Awareness. If you want me to mention your event or activity, please contact me.

It all starts with "Light it Up Blue"

On April 2nd around the world significant buildings are going to be lit up in blue to highlight Autism Awareness Day. In Australia, Melbourne's Federation Square will turn blue.

If you want to find out more about "Light it Up Blue", visit www.lightitupblue.org. You can make your own contribution to the effort by doing one or more of the following:

• Change your Facebook profile picture to the Light It Up Blue logo and tag at least 10 of your friends.
• Post on your blog about how you are “lighting it up blue” to raise autism awareness.
• Add the Light It Up Blue logo to your e-mail signature … and type your e-mails in blue!
• On April 2 wear blue clothing and ask your co-workers, schools and friends to wear blue too. Take pictures and add them to our Flickr gallery.
• Bake puzzle piece shaped cookies and frost them with blue icing, then bring them to your school, work or place of worship to raise autism awareness.

And, remember, if you do these things be ready to answer questions. Make sure that if you do not have first hand knowledge of Autism, that you do some reading on the topic. This is a good place to start: www.autismspectrum.org.au


And come back here to hear Jennifer's story tomorrow....

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Building empathy

One of the things I discuss with my trainee teachers is the importance of promoting empathy rather than sympathy when including a child with a disAbility. An issue that brings about the most debate in this context is, when a student with a disAbility first joins our class, whether we should talk to the class about that child's disability.

What children want

Chadsey and Gun (2005) interviewed a group of middle school children, asking them to explain the things that help them develop friendships with their peers who have a disability. Here are some of the key things they said:

1. Segregation is unfair
2. Teachers should come into classes to give us more information about students with disabilities
3. Don’t let students make fun of students with disabilities
4. Create programs where both students with and without disabilities can hang out with each other
5. Use volunteer peer partners (eg in buddy systems)
6. Group students with disabilities into our social networks
7. Have students with disabilities tell us about their disabilities
8. Clubs or after school activities should include kids with disabilities and should be of interest to everyone
9. Let students with disabilities take the same bus as us

Empathy

"the power of understanding and imaginatively entering into another
person's feelings" (Collins Concise Dictionary)

Understanding and relating to each other's experiences is an important part of developing relationships and respect. However, the way we help our students understand others' experiences will influence how they perceive that person.

Sympathy

synonyms: compassion, pity

A relationship built on pity or compassion is an "unbalanced" relationship, a relationship where there is not an equal balance of power or status.

For example, I want to share with you the story of a little girl with Down Syndrome - lets call her Sally. Before Sally came into the class the teacher talked about Sally's difficulties. She suggested that Sally would need help doing certain things.

The intention of the teacher was great - to promote understanding and a smooth transition. And when Sally came into class, it seemed like this is what had happened. However, on closer inspection the children were treating Sally differently. They were using baby-language to her, they were shepherding her around the school without really listening to her, they were mothering and smothering her.

What is the alternative?

Avoid talking about the child when they are not in the room. To those who ask, "Why?", think about how you might act if you have just had a "lesson" on fellow student and then the student walks into the room. First, you probably have developed an expectation of how that person will look and act based on your understanding of the teacher's words. Secondly, you will probably turn and stare - not being intentionally rude, but because you want to "see for yourself" this new person. For a child who needs a sense of belonging, to "blend" with the crowd, this can be very distressing. Even if the reactions are positive or compassionate, the child is starting off being seen as different.

If you want to share, share together. Rather than talking about one child, get everyone to talk about themselves. This way you are building a sense of similarities, and fellow-feeling, rather than setting one child up to be separate. Using "ice-breaker" or "get-to-know-you" activities at the beginning of the year (or any time during the year if there are indications that students may be at risk of bullying/being bullied) can be really effective.

Here are some ideas:

• Sit/stand in a circle. Have a bean bag/ball to be passed around. Have a theme eg. I am good at... but am not so good at .... The person who is holding the ball/bean bag has to complete the sentence, then call someone's name and pass the ball/bean bag on to them.
• Paint and/or collage a self-portrait using words, pictures, phrases, little biographical stories, photos and so on.
• Have each child write and share their "bio" - a short story about themselves.

This means that when you are sharing you are focusing less on the label, more on the person. You are also conveying a sense of similarity and belonging to all children, not focusing on what is making one child different to everyone else. Everyone is different - that is the value of diversity.

Talk about diversity, difference and individuality. Click here for a good article by the Children's Hospital.org on how to talk to children about recognising and valuing diversity. We have become very good at incorporating books that reflect diverse cultures, non-traditional gender roles and different families into early childhood, primary and secondary education. We should be increasing the range of books we use that portray people with disabilities. We should be incorporating units of work on disAbilities into our curriculum - from looking at sporting heroes, to musicians, to works of fiction aimed at promoting understanding about Aspergers, Autism, Down Syndrome, ADHD, Hearing impairments and so on. Empathy exercises can also be used - eg. we don't have to wait until we have a child with a vision impairment in our classroom before we get children to experience what it might be like by getting them to complete an obstacle course fully or partially blind-folded.

Decide what peers may need to know, and address the issue. Some children with disAbilities will be overwhelmed by emotions at times to the point that they may have a melt-down. We need to ensure that we have processes in place to ensure the safety of the child and their peers. If you are including a child who is at risk of having a melt-down in the classroom, you don't have to talk about the child, but you should talk about the behaviour. Have a discussion that is focused on helping children relate to the experience and problem-solving. For example, address:

• How would you feel if.... (lead children to talk about what makes them frustrated, angry, scared)
• What would you do if you couldn't say what you feel?
• What should we do if... (lead children to design a set of steps to follow if they are afraid someone is going to hurt themselves or others)

You could use a similar process if you need to build awareness of health issues such as epilepsy.

Let the child and parent control the information sharing process, or use rules. In some cases it will be important for the child to share specific things about themselves. For example, a classroom including a child with low vision will need to keep things in the same place and keep the floor clear of obstacles. In this case, you could have rules to this effect in your classroom. You could talk to the child prior to designing the rules to see if they want to share a little of why they need these measures in place. Some children may not want to share information with their whole class, but may want to have the opportunity to share it with a smaller supportive group of peers. For young children, it is the family (parents/caregivers) who should decide what, when and how information about the child is shared.

Be prepared. Especially with younger children, and if a child has a disability that makes them visibly different, you might get questions such as "What's wrong with Johnny?" Brushing off these questions, or treating them as inappropriate behaviour, can make children feel like there is something "bad", "wrong" or "secret" about the child with a disability. Instead, we should answer them as openly and honestly as possible. Teachers should discuss possible answers with the family and/or child before these questions come up. Families have often had much practice in answering these questions.

In the case of the question, "What's wrong with Johnny?" you might say, "There is nothing wrong with Johnny. It is just that his legs don't work the same way as yours so he has to use crutches to help him walk."

The aim should be:

Helping children relate to each others' experiences. We all have things in common, but we are also all unique.

Reference:

Chadsey, J., Gun Han, K. (2005). Friendship-Facilitation Strategies: What Do Students In Middle School Tell Us? Teaching Exceptional Children, 38(2), p52.

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Friendship or Interest Groups

Connecting children with other children who are interested in the same activities is a great way to increase the changes of lasting friendships developing. Using friendship or interests groups is one way to do this.

In the Classroom

- Seating arrangements: Seating children in groups rather than rows is a good start in helping to connect children. Grouping students using your understanding of their personalities and interests can further increase the chances of friendships developing. For example, you might get students to make suggestions about names for teams. Once they have names, get children to nominate which group they would like to be in. This could tap into interests such as sports, animals and colours.

- Social skills lessons: Using the PDHPE curriculum to teach children social skills in the context of games, sports and other "bonding" activities can promote friendships. For example, get children to nominate their favourite games and/or sports. Take turns using these as part of your lessons.

At school

Interests groups: Schools (especially high schools) often have drama, music, chess, computer and sporting clubs or activities that occur during break times. These structured and supervised groups are a good way to connect children with their peers if they struggle to do this due to the lack of structure in the playground. If you can find a club/interest group that matches the student's particular interest this will help them gain a sense of belonging. If there is no established group that taps into the child's interests, look into organising one.

Shaddock, Giorcelli and Smith (2007) tell of a mother who organised what she called a "Friendship Building Group" for her son with Down Syndrome. She was actively involved in promoting awareness about her child's strengths and difficulties, and meeting with her son's buddies to discuss any social issues. You might want to speak to your school about the possibility of setting up a "friendship group" where you send invitations home with students to participate in a once-per-week activity you organise on the playground based on your child's interest.

At home

Extending on what was done at school, the mother mentioned above organised activities such as a once a month BBQ for the children who connected with her son and their parents. She stated that "it was at these get-togethers that the parents would learn about James and feel more confident in inviting him over to play." (Shaddock, Giorcelli and Smith, 2007 p22).

"Playdates" are also a good way to connect children. If your young child does not have any specific friends at school, it is best to start with buddy systems and interest groups. But once these have connected your child to peers, you can increase the chances of these connections developing into friendships by establishing "playdates" that revolve around their common interest (like watching a footy match, or playing chess, or playing Nintendo etc).

Helping other parents understand your child's strengths and difficulties could also help extend the friendships, and increase the chance that your child may be able to visit their friends' homes. Sharing information can help deal with the fears or misunderstandings other parents might have about your child. The mother mentioned above wrote a note for other parents about her son's strengths and difficulties as well as having the monthly BBQs.

A great resource:

If you are looking for easy-to-access information about inclusion, whether you are a teacher or parent, the booklet "Students with Disabilities in Mainstream Classrooms: A resource for teachers" by Shaddock, Giorcelli and Smith (2007) is a great place to start. It has information relevant to both primary and high school teachers, both academic learning and social inclusion.

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