15 years ago, I was just a few weeks away from giving birth to my second son. I was incredibly excited to be able to introduce him to my happy, outgoing, sociable 3 year old.At what turned out to be my last midwife appointment, a week before my due date, my midwife told me that baby’s head was engaged and felt to be 7lb – “maybe even as heavy as 7 and a half pounds”…
A couple of days later my waters broke, an ambulance arrived and I was whisked to our local hospital. And whilst I was mildly uncomfortable, I certainly wasn’t expecting what happened next! The initial examination was met with some confusion from the nurses, a mobile scanner was brought in and I was told my baby was breach. A footling breach. And that he was a little bigger than my notes suggested. Things happened very quickly and I found myself being prepped for an emergency section and within minutes I was introduced to my 9lb, angry, son.
He was very angry. And nothing soothed him. Certainly not being held; that just made him worse.
As time passed, he remained angry. He hated being touched and after I fed him he would inch away from me rather than remain in my arms which was heart breaking. I raised my concerns with my health visitor but she thought that I spent too long comparing him to my older child. I lived a long way from my parents and my then partner was no support at all.
Speech was delayed. But not enough to result in getting a referral. I needed to be careful how I worded sentences as he took everything literally. He couldn’t cope with not being warm, with loud noises, smells, change in routine. Food was an enormous hurdle, with no foods allowed to touch, yellow foods being off limits… Behaviour was a huge issue – a teacher even told me when he was 18 months old that it was unlikely he would attend mainstream school. I was subjected to biting, punching, kicking from an incredibly strong and determined toddler. I witnessed him head butting the floor out of sheer frustration. He was a little ball of fury. But still there was no support.
When he was three and a half, I invited my health visitor for a home visit. Within the home environment it became apparent to her within minutes that indeed there was a need for a referral; among her concerns was my son was not interacting with his siblings and his younger brother was hitting targets that he had yet to reach.
We were fortunate that our local CAMHS had a cancellation and saw us within days. The professional that we saw did a thorough barrage of tests and spoke to me extensively. Then turned to me and said, “Obviously I can’t diagnose on the basis of the first session, but your son is clearly on the autistic spectrum”.
And I broke down.
But through my tears I realised that whatever the diagnosis was, it was just a name. It was just a word. Nothing had been ‘given’ to us other than an explanation and he was still the same healthy little boy that had walked in with me.
He started school a few weeks later. And thanks to the staff (mostly the wonderful head teacher who sat and listened to me pour my heart out regularly, handed me tissues and gave me tasks to focus on) he settled quickly. He struggled with enormous social issues and was just as angry there as at home, lashing out at children who deliberately provoked him to get a reaction.
Further visits to CAMHS confirmed that he had Aspergers Syndrome – or high functioning autism. Outside agencies came in to school and helped with coping strategies, anger management and cartooning (a simple drawing to illustrate how a subtle change in behaviour can alter the outcome) but he maintained that he saw no need for friends. I taught him to look at people’s ears or just to the side of their face when talking to them as people expected eye contact which he found too difficult.
When he was 6, I moved with him and his two brothers. The new school was significantly larger and bizarrely that helped as he could be anonymous. He still struggled, but slowly started to form a little circle of friends and an emerging sense of humour began to develop.
We didn’t feel comfortable with the agencies in our new location as the local NCH family Project was incredibly judgemental and only criticised any moves we made to provide rules of behaviour.
The physical behaviour started to wane – just the occasional punch in the kidney, resulting in medical treatment – but the shouting and swearing would raise its head when he became frustrated. He became much more tolerant to being hugged too which had always been such a source of pain to me, because as a parent, holding your children is a natural instinct.
The move to high school went far smoother than I could ever have hoped. The small circle of friends became the large circle of friends. Education is a doorway to a different world and it’s something he has grabbed with both hands. He was recently one of a small group of 14 year olds in the North West who were treated to a day sponsored by Cambridge University, in the hope they would apply there in four years time. He’s gained confidence from excelling in subjects that he enjoys and he’s found hobbies which have allowed him to bond with people further. He has also developed another coping technique: constantly wearing ear buds and listening to music to prevent unwanted conversation from strangers.
The tense, unhappy child has become a relaxed and happier teen.
We still have hiccups. And sometimes it’s difficult to know what is an Aspergers outburst and what is a normal teenage rage. We still have communication issues – even yesterday. He went out for the day and didn’t let me know that he was coming home late. When he finally came home he looked confused and said “but we weren’t doing anything so I didn’t have anything to tell you”.
When my son was small, I could not have imagined how bright our future could be. It was terrifying knowing that I was unable to help my confused and lost little boy. We were sent the prose ‘Welcome to Holland’ and we are now truly embracing the culture!