Life with Luke

After Luke was diagnosed, I felt relieved that at last I had a name for the collection of differences that made Luke so special but yet so unusual. However.. .although I knew what was different about Luke, although it had been given a name, I have to say that I still didn't quite take it on board. I read up on AS, I talked to the school about how best they could help him, I liaised with the autism team and tried hard not to overload Luke with sensory experiences and unpredictability. With others however, a stony silence hung in the air as Luke talked and behaved in his odd ways. How could there be anything wrong with Luke? After all, he looked fine! Surely he was merely a bit eccentric - a little odd? .and so I bowed down to pressure and kept quiet, never mentioning the dreaded 'A' word in front of my husband and family. I had Anna, a delightful and placid little baby by then, and soon after, Joe was born. So Luke, I suspect, muddled his way through life as I tried to perform an amazing balancing act and keep many plates spinning at once.

Life with Luke was a constant worry. Helpful and polite to the extreme, he was ridiculed and bullied at school and whilst it was my job to go into school and try to sort the bullying out, my heart was torn apart, watching my little boy spin around in circles in the playground on his own. He also had to undergo many operations on his eyes and often reacted very badly to the antibiotics and other medications he was given, becoming violent and aggressive. He never slept for more than three hours a night - prowling around the house like a thief in the night he would tap his beloved pencil before him and drive me to distraction. Still I tried. I made star charts to deal with obsessions that were pervasive, I worked to desensitize him and encourage him to tolerate more sensory experiences and generally sought to make life easier for Luke. Luke however stood rigid and inflexible in the midst of a sea of accommodating and affable siblings. As a family we could never go to the beach due to his sensory difficulties and ifwe did I had to carry him over my shoulder and seat him on a towel where he would bemoan his lot. We could never go swimming as a family because Luke loathed the echo and the crowds and one ofthe biggest problems over the years has been the fact that he manages to 'get lost' on a regular basis. Luke would think nothing of wandering off and counting blades of grass for hours on end, oblivious to the fact that there were police helicopters flying overhead and all and sundry shouting his name. Life with Luke certainly keeps us on our toes!

After Anna, Joe and Ben were born, and you've read their stories in earlier chapters. When Ben was diagnosed it was obvious to all that there were great similarities between him and Luke. Our lovely educational psychologist (thanks again Julia) convinced me that it was time to tell Luke that he had AS. I made excuses and said that I hadn't told him in case he began to exhibit 'symptoms' that he wouldn't ordinarily have shown. I argued that I thought he wasn't old enough to deal with it. The truth was (yes Luke, now you know!) I was scared. I didn't know how he would react, didn't want him to feel different (boy, little did I know), didn't know what to say. Maybe I hoped that one day it would go away - OK, deluded I know but.! In the end I merely left an article out for Luke to read (coward or what?) and when Luke read it and came to me, telling me that it sounded as ifit were describing him,

I merely agreed and told him yes, he did have AS.. .not the best way for sure!

For all you parents who are pondering over whether to tell your child that he or she has AS and what to say, here is what Luke has to say on the matter.

I had finally found the reason why other people classed me as weird. It was not just because I was clumsy or stupid. My heart lightened instantly and the constant nagging that accompanied me all my life (not my Mum) stopped immediately. I finally knew why I felt different, why I felt as if I was a freak, why I didn't seem to fit in. Even better, it was not my fault! (Jackson 2002)

Whilst I was busy deliberating over when and what to tell Luke, the poor child was going through life feeling like a freak and wondering why he was not like the rest of the world. Now he is older he can decide for himself (with help) when and who to disclose his AS to. For all parents in the same position Luke says, "So my final word on this subject is get them told!" (Jackson 2002).

Once Luke discovered his AS and subsequently embarked on the gluten- and casein-free diet, he decided to document how he felt and so his first book A User Guide to the GF/CFDietwas born. As hormones hit him and he surged from childhood to adolescence, he searched for tips for AS kids in the areas he had difficulties with, and so decided to help others by writing his Freaks book. However, whilst his book is full of advice and tips to AS adolescents, Luke, like anyone giving advice, does not find it quite so easy to practise what he preaches!

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