As a baby, Mr12’s growth and development was absolutely regular. He was yummy! He smiled, laughed, ate everything and was affectionate. He was also a very strong, non-stop, fidgety toucher who was impossible to change nappies for. Sometimes it took two of us, one just to pin him down and stop him throwing all the change items into the air. His hands were constantly searching for more tactile stimulation.
Mr12 was my first experience of parenting, and early into the job I felt a failure. Discipline was impossible. Public outings were fraught and unpredictable. I had no verbal control. With my husband frequently overseas, I often felt alone, housebound and inadequate. I had to be two hands-free, and ready to run for EVERY moment that I was outside of my home or car. He literally climbed the walls. How did others know their kid could be a few metres away from them and be fine? How did they get them to calmly comply with (at least some of) their requests? I was the thinnest in my life- I never relaxed unless he was in care or asleep. I used to joke that life with him was like having twins in the one body.
At childcare, we gradually noticed differences between him and his peers. No sign of ability to sit still. He jumped up suddenly at mat time and stood in front of the book being read. He still touched things constantly, even when told not to- once it was broken glass. He spoke a bit later but loudly and constantly, interjected and seemed oblivious to the needs of others in the room. He was bossy, and an emotional over-reactor who would cry or tantrum at the drop of a hat. He had no fear or respect for authority, danger, or even pain for that matter.
Except when he was with us, he would avoid eye contact, in fact he seemed to be talking over people’s shoulder or to the side of them. Then there were the serial obsessions and unbreakable attachment to comfort items too. With zero experience in our entire family, any enlightenment was far away. My relationship with my boy grew too intense and I also felt he was bored with me and home, so despite guilt I put him in extra childcare. Family said I was giving him no discipline, that I let him control me; he needed to learn rules/get smacked/learn consequences. Strangers rolled their eyes in public as I attempted to placate him when he wasn’t coping. I learnt to avoid shopping centres, I shopped only when he was in care. I loved him and I sure didn’t know what was happening, but I did suspect there may be more to the picture.
Eventually we got onto the CAMHS waiting list. We had an initial consultation, during which we gave extensive history and concerns. We were each asked what we thought we might discover. Because I’d been reading I saw that my boy’s traits did not seem to match Asperger’s Syndrome well, so I suspected PDD-NOS. We awaited our far away assessment team appointment dates.
In the meantime, we began primary school- a stressful time. Through this enormous transition we became even more desperate for answers we had no names and no strategies for. By April 2005, at five and a half, our boy was branded. Asperger Syndrome and ADHD. I was not surprised about the ADHD, but we were shocked about the Asperger’s (and autism)- because he had so many abilities that were atypical of the Syndrome, such as reading faces and not being literal. I soon learned it was a cumulative, numbers thing. He was over the line. Though it took a long time to sink in for us- some family much longer- the diagnosis enabled us to learn, work together with the school and therapists to do the best by him. Also, after the shock and sadness subsided, there was an enormous, gigantic sense of relief and vindication. A weight came off me. It was not my fault.
He is now in High School, and though we’ve come a long, long way with much to be proud of, there’s still much work to be done- especially in the domain of independence. Ultimately though, however obstinate to live with, he is a kind and sensitive soul. He has a few good friends, is a wonderful big brother and can be really sweet and funny. (Just overlook the noise and mess and keep repeating yourself!)
How soon did you know there was something different about your child?
{ 10 comments… read them below or add one }
Jen’s boy sounds like my first. We knew something was up from birth. Unlike almost all newborns, mine stayed awake for hours. By the time we left hospital he was afraid of the dark – I know, it sounds silly, but we tested him by moving from a lit room to a dark one till we were certain. He screamed like we were skinning him alive when we put him in the bath. I could NEVER leave him alone and there were so many other things. Which include not sleeping for more than 45 mins ever. But then my family is full of this sort of stuff, although we never had a name for it. By the time he was diagnosed – at 11 and 3 school moves – and I found out about such things, it turned out that I had been using ABA and FBA without knowing. That was my mother’s family wisdom about child rearing. How we got as far as we did still amazes me. Mind you, by 8 he was suffering depression and self harming. We have come such a long way. We’ve had our third child diagnosed at the end of last year, and our 12 girl has ADHD. In our house THAT is normal!!
I’m so glad you shared this. You have such fabulous insights xo ps: here is a post that tells a little about our diagnosis…. http://theiloveyousong.blogspot.com.au/2010/04/will-you-remind-me.html
I love the way you write S.
We knew something was up with Sam early on I guess. But he was such a divine little soul, it was easy to gloss over the fact that he was small. Or that a whole heap of little things didn’t add up. Because he was engaged with us and others. He was talking, walking etc, he was just later to do so than his sister. We are still finding it hard to get a doctor to pin down exactly what Sam “has”. Aspergers as we all know, presents itself in a million different ways.
As for Sam’s schooling situation, we have a meeting with the Principal on Monday. Things have progressed but I won’t know their thoughts until then. I’ll write something and let you know.
Bern x
Thank you Bern, a few times over: for your lovely compliment, for sharing your story and for promising to let us know how you go. We are all interested to see that Sam gets the treatment and education he deserves. Good luck Monday xxx
Terrific insights. I can’t believe how many ASD mums were criticised by their families for bad parenting. I think I should go and give my family a big hug now, as I never heard a word of criticism from any of them and my boy was a real handful until he started early intervention.
Thanks Benison, autism parenting as many of us know, can be an isolating experience. But especially when no one *has* any experience of it. Thankfully that was then- our family have grown into this with us over time. They’ve had to see for themselves what he’s all about. (Mind you, the grandmas still say both kids behave better for them
)
I suspected my oldest might be on the spectrum when he was a baby in my arms. Cuddling didn’t settle him. He wouldn’t sleep, and he seemed the same or happier when others held him. By 18 months old I was pretty darn sure, and had been doing therapies anc such with him since hw was 8 months, because I figured it wouldn’t hurt him if he was fine. So much self doubt though, as doctors, health professionals and family all told me I was ‘imagining things’, or even that I was ‘looking for it, and would therefore find it, no matter which child I was looking at”. By the time we saw the specialist Pediatrician (the mainstream one said he was ‘fine’) just after he was 2yo, we knew for sure. I had no idea the scope of how much he had achieved until I watched my younger children go through their development normally. It wasn’t until then either that the self-doubt started to fade. For what it’s worth to all those parents out there whos children get diagnosed later: it usually isn’t because you ‘missed it’ in my opinion, honestly, I see it usually as being those parents who have spent a LOT of time compensating for it and doing extra teaching. It makes the condition even more invisible to others.
I’ve never met anyone who’s known that early Jen. I’m sorry you didn’t get the support and advice you needed. Your instincts, especially in the face of contradiction from health professionals, have been so very attuned with your child. What a great Mum you must be.
It’s hard with a first child because you have little first hand experience of what is normal and what is not. We also had a first child diagnosed with Aspergers at age 10 and I didn’t realise the extent of my sense of failure as a parent until after the burden began to be lifted. Still brings me to tears thinking about the years of self doubt. Thanks for sharing your story.
Exactly- first time parenting is a trip of its own, but when something in our experience differs from the norm, not only can it be difficult to know what’s going on, but to know what to do about it. So sorry you felt alone in this. On the upside, today we have the wonderful gift of the internet and all the sharing of information that will be invaluable especially to current first timers. Thanks for sharing this Tiffany.