My eldest son turns 7 in March and is a ball of energy all the time. Apparently he has no stop button – trust me I have tried and failed to find one! He is exceptionally bright and is forever asking questions which is quite exhausting for me as I am not as energetic as he…unfortunately.
His mind is amazing and I know the day is not too far away when his knowledge will completely outstrip mine – I am already struggling to provide adequate answers for his questions and, believe me, he will not take ‘I don’t know’ as an answer. He is a unique little boy and I wouldn’t change him for the world, despite the other challenges his high-functioning autism and albinism pose.
Part of this thirst for knowledge is due to his high intelligence which is part of the autism. The flip-side of this thirst for knowledge are the obsessions that take over everyday life. My son’s current obsessions are escalators, travelators, elevators, public telephones, pedestrian crossings, speed humps, street lights, road signs and ATMs.
Whenever these items are encountered we must stop and inspect them and talk about them incessantly and ask the same questions about them over and over again. I would like him to find out how they work and have more purpose to his interest but for now he just wants to look at them and talk about them. We’ll see whether these obsessions can progress to more purposeful interests as he gets older and his need for knowledge deepens.
The autism is a challenge in many ways. Even though he is high-functioning (which means he can communicate verbally and convey some idea of what he is feeling and thinking) he still doesn’t understand social interaction and finds it difficult to talk to other kids. He doesn’t know what to say, how to hold a conversation or how to properly behave in social settings. He is extremely literal and doesn’t understand sarcasm or common phrases and when under stress loses his ability to control himself and convey his frustration verbally.
He can get upset over the tiniest change to routine – for example he raged at me in the car for half an hour the other day as I chose to travel home a different way – and can also lose his cool when he is denied something he wants (but hey, all kids are like that!). On the plus side, he is affectionate, witty, talented at drawing and writing his own stories, an entertaining companion and, at heart, a really good little boy. He adores his baby sister and also loves his other sister (when they’re not fighting or annoying each other) and in many ways is just a regular nearly 7 year old boy.
He is also special as he has Occulocutaneous Albinism, a condition where he lacks pigmentation in his hair, skin and eyes. He is lucky in some ways as the usual vision impairment that occurs with this condition is relatively mild – he is legally blind but he can read and does not require a cane or other aids to get around. He has no long distance vision or depth perception though, which does cause problems for him, but he is still able to get around in the playground and navigate stairs (another strong interest for him!).
His natural enemy is the sun which is unfortunate as we live in one of the harshest environments here in Australia. He wears long sleeves all year round, wears sunscreen constantly and has transitions lenses in his glasses to help with his sensitivity to glare. He has a growing collections of hats and is being brought up to accept that these precautions are what he will always have to do in order to look after himself properly.
Autism and Albinism are not ideal companions. The basis of autism teaching and assistance are visual aides which can be a challenge for someone who is visually impaired. Conversely, a common strategy used for those with a vision impairment is to listen to the spoken word, particularly where increasing a font size or enlarging print is not an option.
Unfortunately, a common problem with autism is an auditory processing disorder which means it is difficult for those with autism to concentrate on what is said without some visual or other support. These issues are not insurmountable but they will be constant challenges for us and for our son as we continue our journey together.
We have been blessed with the support of the Royal Institute for Deaf & Blind Children for providing early intervention for his vision impairment and the continuing assistance of Autism Spectrum Australia for giving him an autism specific education while we work on integrating him into the mainstream achooling system.
Hopefully, if all goes well, we will see our son integrated by the end of this year which would be an awesome result for a special little boy who faces many challenges but who rises to each one and makes both his mother and father extremely proud. As I said earlier, despite everything I wouldn’t change him for the world – I just hope I can guide him and protect him and do everything I humanly can to maximise his strengths and give him the best chance to have the incredible life he deserves.