Big Steps and Big Deals

On July 18, 2011, in Kokoda, by Nathan
1

Hi,

As Dad and the other three guys make the final preparations for their Kokoda walk I thought I would let you in on some progress of our own. Last Friday our 7 year old son, who has autism, had a friend come over to visit. What’s the big deal? Well, at 7 years old, it was the first time he has ever had a friend come over to play. Sure, he’s visited friends and met on “neutral ground”, but our house and his bedroom in particular have always been his safe places where he can have his much needed “alone time”. So, having a friend over was a big step. The visit had been planned for a couple of weeks, another boy with autism would come for a couple of hours with his mum (We all accompany our kids, it reduces anxiety, for both the kids and us!). Preparations began at the start of the week with a menu planned (Cupcakes! With sprinkles!), a bedroom was cleaned (If only we always had such a great motivator), and everything began to build into a bit of a frenzy by Thursday night. It is rare to see our son so excited.
At this point there was a fare bit of trepidation, at least on my part. What if he didn’t enjoy himself? What if he went to his room and ignored his friend? What if he had a meltdown? What if his friend, who also has autism, decided not to come? I think as parents we all worry for the happiness of our children, but as I mentally checked off the things that could go wrong I began to feel really quite frazzled.
In the end it was a beautiful day. The boys played together for hours – literally hours – without the need for prompting, directing or intervention from any parent figure. They ran around the house, explored the backyard, hid in the bedroom and dug for treasure in the garden. They played with our baby daughter, ate cake, talked (to each other and us), and came inside grumbling that no pirates had left any treasure chests around.
This may not sound like anything amazing to you, but for a boy who usually sits by himself or counts his fingers when other kids are around, it was a big deal. Every day we see him taking bigger, bolder steps. Doing stuff that other little boys do. I can’t wait to see what he can do by the time his Grandfather gets back from Kokoda.
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Likes Telephones, has ASD

On March 5, 2011, in Kokoda, by Nathan
1

My son is seven years old, likes to play the piano, enjoys maths, does chores for pocket money and has autism. My nephew will turn ten this year, loves lego, plays with his pet dogs, has a cheeky smile and has Aspergers. Both boys play with their sisters, tease their sisters and help their sisters. My son hates to eat vegetables, always wants Maccas, and pulls out a pile of toys two minutes before we want him to go to bed. They are two of the happiest, friendliest, naughtiest and clever boys I have ever met. And they also have an Autism Spectrum Disorder (ASD).

What is autism? Good question. Describing autism is something we have been struggling with lately, as our son is coming to an age where he begins to understand that he goes to a different kind of school than his sister. How do you tell a seven year old that he has, and always will have, trouble communicating with people, and that his intense interest in public telephones and Little Disney Library Books sets him apart from other kids? My son is a happy-go-lucky kid, when he isn’t terrified of thunderstorms or strangers, and he will deal with his differences the way he deals with everything – with a grin and a cheeky comment.

What makes me tight in the chest, as a Dad, is the lack of understanding from others. Many people hear the words “autism” or “Aspergers” and don’t really know what they mean. Sometimes it conjures up images of kids quietly rocking in the corner, or of Dustin Hoffman in the movie Rainman. They think of these things and then look at my son and tell me “He seems normal”, or “He’s not like those people”. That terrifies me, because when people don’t accept or realise that my son has a disability they look for other reasons for his unusual or “unacceptable” behaviour. They will not realise that asking my son to sit still, or speak to someone, or understand sarcasm is as impossible as asking a kid in a wheelchair to go up stairs. The fact my son is verbal, or appears happy, or has a sense of humour, does not change the fact he has an ASD.

As David, Steve, John and Ian prepare for and undertake their Kokoda walk, I hope that people become more aware of the many ways in which ASD’s can present, and the challenges that face people with an ASD and their families.

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