The Journey of Parenting from Birth to Teens
By Anna Van Der Post et al
Key Themes: aspergers syndrome, childhood, family, relationships
A varied collection of parents' stories about raising children and teenagers with Aspergers. The contributors have bravely written totally honest, deeply moving and sometimes harrowing accounts about what it really feels like to care for a challenging child. The book helps to remove the isolation and guilt felt by so many parents. Embedded within the narratives are their unique ways of coping which may inspire some with new strategies to try. This book will also appeal to relatives, friends and professionals seeking to get a better understanding of Aspergers and the far reaching effect on the family unit.
About the Author
Anna Van Der Post is both a research psychologist and a mother of a teenager with Aspergers. She has worked as a researcher for both mental health charities and the National Health Service.
For the last fourteen years she has lived in the South West of England with her son whom she has home educated.
Anna enjoys coastal walks, cryptic crosswords and spending time with her friends.
Nobody could have wanted a child more than I did. I had always known that I wanted to be a mother so when, on my thirtieth birthday, I conceived, my life was complete, right on plan, or so I thought! I had, at last, realised my biggest dream.
I had a normal pregnancy and birth. James was born screaming and had clearly enjoyed the whole process about as much as his mother had! Everything seemed normal and he was, seen through the rose tinted glasses of most new mothers, perfect. I soon discovered that James did not believe in sleep; he took short cat naps, and then only if I held him. When I attempted to gently transfer him into his pram, he usually woke instantly, over-sensitive, it seemed, to any changes in his sensory environment. This inability to sleep carried on until his fifth year, waking hourly through most of his infancy. Apart from his sleep problem, he seemed to be pretty much the same as other babies I had known - only much more demanding. Looking back it was obvious that he was exceptionally bright. I can be forgiven for failing to notice because before I had my son, I had been a nanny to three very intellectually able boys. As a consequence, my ideas and expectations of normal development were skewed, based as they were on an artificially high starting platform.
When he was just two or three months old James moaned relentlessly even when I held and talked to him. Like most parents I tried everything I could think of to calm him. I soon discovered that he could be reliably entertained if I walked him around the house pointing at objects and naming them. The other very bizarre action was to run round and round the dining room table as fast as I could. I cannot imagine what on earth made me do this with a vulnerable baby in my arms, but it worked. I spent an inordinate amount of his childhood doing laps around the dining room and as we had floor to ceiling windows and were over-looked by adjacent flats I’m surprised no one called social services or the local mental health team! 1
Throughout his first two years it was a struggle to keep him amused and we were exhausted and irritable from lack of sleep. James met all his developmental milestones, including crawling and walking, pretty much on time. He was breast fed and showed little interest in solids until his second year when he ate a range of foods quite happily with no ill effects.
At one year four months, James saw his grandma cry; he kept looking at her, clearly concerned and then proceeded to cuddle her. I noted proudly in my diary ‘James showed genuine sympathy today.’ I have included this because his ability to empathise was short-lived and, as you will see, by his teens seems to have disappeared for good.
At one year five months I noted ‘James loves jigsaws and can effortlessly complete eight piece puzzles. When playing in the garden he will often lie on his tummy and watch nature, focusing on tiny ants for long periods of time. He can now easily match 12 different shapes in his shape sorter. Yesterday he surprised me because his cash till broke and when I took it apart to fix it, he was absolutely transfixed and insisted on helping to reassemble the bits.’ I am not recounting his interests out of maternal pride, but it seems to me now, that all of these activities require a very focused one track mind. This may have been an early hint of his later phenomenal ability to focus on a single task to the exclusion of all else.
When he was about 16 months old, I realised just how bright he was. One of his favourite pastimes was when I gave him a complex instruction, usually involving three or more sequences of tasks e.g. ‘Go into the kitchen and open the second drawer, find a red tea-towel and bring it back to me please.’ He loved this game and always obliged with the right colour tea-towel.
At 19 months I have recorded that he loved to feed dolls and cuddly toys. He was clearly participating in and enjoying imaginative play - which later he was to drop.
I also noted at this age how much he hated wearing clothes and was particularly resistant to shoes and coats. At the time I thought he was beginning 'the terrible twos' and just wanting to assert himself. Knowing now how over-sensitive James is to tactile stimuli, I am so glad that I decided not to make it into a battle and allowed him to be naked at home and dress eccentrically when out. He would happily tolerate his pyjamas and it was not unusual for us to attend playgroups with pyjamas and sheep slippers. It was often embarrassing when James wore dirty old pyjamas in very cold weather and at the time I experienced it as quite a stress. But looking back it seems unimportant.1 However, over-sensitivity to touch is another early indicator of Aspergers which now makes sense.
At 19 months, I was reading him a new Postman Pat book which, somewhat out of character, he ripped from my hands and threw on the floor. I asked him what the problem was and told him to pick the book up and show me. He pointed to the dog which I had correctly called a sheepdog. It didn’t take me long to realise that he had been disturbed and confused by the word ‘sheepdog’. He had felt uncomfortable as his understanding of the world was suddenly thrown into disarray; he knew what a dog was and he knew what a sheep was but there was not such a thing as a sheepdog. I explained that a sheepdog did not mean a dog that was also part sheep but that it was a type of dog that was very good at helping farmers to keep their sheep from wandering too far and getting lost. He smiled and we happily carried on with the story. This sort of misunderstanding became increasingly common and began to trouble me.2
I think at this point that I ought to mention that in order to afford to stay at home with my son, I child-minded. I am extremely lucky to have a mother who totally supports me and is my very best friend. Together we somehow managed to care for James and, over the following eight years, he was surrounded by children of all ages. Like most babies and many under twos he showed only passing interest in children of a similar age, much preferring the company of older children or adults. However, in his case this propensity continued.
At around two and a half, I wrote, ‘he has an imaginary friend called Bertie. His imaginary friend is a really tiny boy who has a tiny white car with yellow seats. James also has Dania the butterfly who is sometimes a bit naughty! His language is pretty fluent now but still unclear3. Lots of questions How cuts get better - what happens in me body?; How does the moon stay in the sky? Knows left and right hand, his alphabet and can count very well. He spends hours building spectacular models with bricks. James told me he loved me for the first time me love mummy.
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