As I have just written about the cocktail of different kinds of autism both within my family and in each of my boys, I apologize for the fact that I am now going to write mainly about Ben. The main reason for this is because although Luke has Asperger Syndrome, a form of autism, although Joe has AD/HD and a kaleidoscope of different autistic spectrum 'differences' and Matthew has many autistic ways, woven into the dyspraxia and dyslexia, autism is Ben's main diagnosis and his endearing (and not so endearing!) ways are more likely to be recognized by any parents and professionals reading this.
When Joe first came to see Ben, a tiny premature baby on a ventilator in the special care baby unit, his first words were "Cool, when will he become a real boy?" All of the children watched Ben struggle to breathe and need oxygen, watched him be fed via a nasal gastric tube, watched him have seemingly endless blood transfusions and all seemed to accept it as the norm.. .after all they had seen it all before with Joe. As Ben fought on and the special care and paediatric team performed their miracles, he learned to cope without oxygen, learned to breast feed and then take other foods, and after months of hard work and many traumas, became a 'real baby'.
Joe, with his own developmental and behavioural problems, seemed quite accepting of the fact that babies didn't do very much, and even accepted the fact that we had one that screamed rather more than most!
As I have already mentioned, Ben had suffered two brain haemorrhages when he was in special care - he really did seem to suffer with these. The high pitched screaming was endless and the consultant believed that poor little Ben was suffering from head pain. Joe was becoming increasingly frustrated at the fact that his dream of a 'real boy' was taking longer to realize, however when Ben was diagnosed with mild cerebral palsy, all ofthe family played a part in working hard on his daily physiotherapy and Joe became quite used to the fact that we were all to sing 'I ride my big red bicycle' hundreds of times a day whilst carefully moving Ben's legs in the cycling action. After much physiotherapy, specialist seating and a specially adapted buggy, he eventually gained the strength and learnt to sit up just after his third birthday and from then on, physically, he came on in leaps and bounds. He learned to roll over, to crawl and very soon, to pull himself to standing. Joe was delighted - at last Ben was on his way to becoming a real brother to play with.
However as time went on and Ben became physically more able, he still did very little other than flick his fingers in front of his face and laugh hysterically for no apparent reason. Joe began to get impatient again and I was asked time and time again when Ben was going to be able to walk and talk and play with him. I had no answers. Ben didn't seem to notice Joe or indeed anyone else at all. However much Joe jumped around, making silly noises and chatting to Ben, Ben seemed to be elsewhere - in his far away place full of unseen noises and images, seemingly quite happy in his own silent little world. The rest of us weren't so keen.
As Joe moaned about Ben not playing with him and being 'weird', I reassured him, only to sit and cry on my own each night. I had watched my child struggle to live and worked so hard to coax his brain and his muscles to work together, only to find that I had lost him to a silent world that only he knew. Only another parent can know the pain in the pit of the stomach that hits each time you look at your child in his own far away land and wonder how to reach him. Only another parent can know the pain that we experience when we look at a typically developing child of the same age. Even now, after so much progression and so much joy -1 still get hit by the familiar pang from time to time.
One thing Ben did like to do was to head bang. I spent much ofmy life attempting to pre-empt a head banging session and prevent him from hurting himself (or me) and I have lost count of the number of bloody noses and swollen lips I have suffered. I never was quite sure why Ben was so hellbent on banging his head. I was very careful not to expose him too much to places with bright lights, loud or difficult noises, but still Ben regularly dropped to the floor and banged his head - maybe out of frustration. Eventually I had to take him out of his cot and let him sleep on a mattress on the floor to prevent him from hurting himself on the cot bars. (He hadn't then and still hasn't now the saving skills or the desire to prevent himself from dropping off a bed and hurting himself.) The first night he slept on the mattress, I went into the room only to witness something akin to a horror film.it looked as if a murder had taken place! Ben had banged his head so hard on the wall that his nose had begun to bleed. Blood was smeared liberally around the walls, the toys, the mattress and Ben. Not only was there blood everywhere but Ben had also smeared the contents of his nappy (one of his favourite pastimes) everywhere too. I undid the safety gate and entered the room, shouting Ben's name and getting no response whatsoever. He was rolling around the floor cackling hysterically, totally oblivious to all except his own silent, seemingly highly amusing, little world. My heart sank and at that moment it suddenly dawned on me that Ben was autistic. Why didn't I realize before? Why didn't someone else tell me before? That was why so many behaviours were so similar to Luke when he was little. Luke has Asperger Syndrome - a form of autism.
After cleaning Ben up and sorting out his room, I set him down on the floor to line up his pegs and sat myself down.. .to cry! I cried for myselfand the fact that I so wanted to be able to reach Ben and be part of his world. I cried for the girls and the fact that they would have yet another 'different' brother to deal with and try to understand. Most of all however I cried for Joe who so desperately wanted a younger brother he could play with.
As I write, only two and a halfyears after Ben was diagnosed with severe autism, he and Joe are rolling around together in the hall, giggling hysterically, their love for each other evident for all to see. Ben is certainly different to most other boys his age, but then again so is Joe. Ben is definitely autistic despite being very much 'in this world' now. One thing for sure though. Joe has his 'real boy' to play with -just not quite who he expected, in fact not who any of us expected though just as much fun and just as real as any other child. One thing I have learned - never say never!
Autism - a pervasive developmental disorder. Not one part of life ever remains untouched by autism. Some areas are kissed gently and leave only a rosy glow; some areas are heightened and enlightened whilst other areas are shrouded in a cold film of fear and darkness. No two people are affected in the same way and maybe that is how it should be. No two people are the same.
I am not going to go into too much detail here about exactly what autism is as I know that there are many, many books that do that far more succinctly than I ever could. I have included the diagnostic criteria of'Autistic Disorder' (American Psychiatric Association) in the Appendix. This is by no means meant to be a do it yourselfdiagnostic manual; children still need to be assessed through the appropriate systems (which unfortunately differ from country to country and town to town), however at least parents have a yardstick by which to roughly measure their child's differences and begin the often lengthy procedure of assessment and diagnosis.
Although no two autistic people are the same, autism itselfis characterized by the Triad of Impairments (Wing and Gould 1979):
• impairment of social interaction
• impairment of communication
• impairment of imagination.
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