As soon as my child was born, I knew there was something special and different about him. I can’t explain why I felt like this, but I just did. I sensed something, yet I couldn’t put my finger on exactly what it was.
As a baby, he would cry when I gave him a brightly coloured toy, yet was calm and content with the soft, gentle shades in his nursery. At the time I couldn’t understand why, but quickly learnt that brightly coloured things were clearly not for him, so back off to the shops I trudged, baby in pram, crying hysterically amongst the hustle and the bustle, while other babies in strollers calmly slept. I was greeted with some rather unimpressed looks for the ruckus that was going on, but nothing I did helped. As soon as we got outside of the shopping mall and walked along the peaceful river, his crying immediately stopped. I had absolutely no idea what was going on. Being a first time mother, I blamed myself that my baby would cry at the most inopportune times, as clearly I was doing something wrong, but little did I know. I put it down to colic. Why in the world I did that who knows as there were actually no signs of colic, but that’s all I could think of. I struggled to settle him as he would become so wound up and overstimulated (yes I learnt that word from a more experienced mother) that he just wouldn’t allow himself to sleep and give in. People used to make comments about how in the world his eyes were always open in the pictures of him as a newborn. My reply would always be, “Well isn’t that what all newborns do?” I received a resounding no from every other mother. Apparently they slept most of the day. What? What happened to my baby sleeping most of the day? I felt cheated and exhausted and really needed some quiet time. He would sleep once a day for a short spell of about 45 minutes which was like heaven. With this little sleep you can only imagine how overtired and wound up he was at bedtime…I used to call it the ‘witching hour’ wanting to escape at that time of the day, every day!
Lisa and Tristan
He started growing up, like they all do, and still these little ‘traits’ of his stayed. I just couldn’t understand it. I took him to doctor after doctor, but there was nothing wrong with him, of course. Oh and another treat I was faced with was that he vomited…a LOT. Never have you seen carpets in a house being cleaned so often! I slowly started trying to figure out a pattern, and each time he vomited or became highly unsettled was after he’d been overstimulated. Lesson number 1 – don’t take him to busy environments. Okay one thing sorted. But of course this wasn’t always possible. As soon as he was in a different environment he would start to cry. A friend of mine suggested that I put him in a formal routine. Hey, anything was worth a try. So a strict routine I followed, and miracles of miracles, things slowly started to get better. Okay so this kid likes routine…another lesson learnt.
We would get invited out at night time with other parents that had babies of the same age, they would all be chilled and relaxed and mine would be yelling like a crazy maniac. As mother’s do, I got plenty of advice…you haven’t taken him out enough that’s why he’s not portable, he needs to fit in and learn he’ll soon adjust, don’t live your life around his routine. It stung, but it rang true, I was doing something wrong, it was my fault that this was all happening. I tried, boy did I try, but nothing worked and still the ‘insults’ would come flying in, from friends, family and anyone else I came into contact with. This carried on, although life at home, with a strict routine was better! Better, but not perfect. I guess no baby or kid is perfect.
Toddler time came and hit me like a hurricane! There was a tiny person charging through my house that was literally like a raging storm and would never, ever slow down or wear himself out. But now it was time to send him off to preschool! I was like a nervous wreck. What would he be like there, was I doing the right thing and what if he was always in trouble.
Well let me tell you, he was always in trouble, especially when it came to outings, plays or anything like that. I eventually figured out that when he was taken out of his normal routine and structured day things would fall apart. A bit difficult to control at a preschool.
The years went on, and when he was about 5, I had some big words thrown at me by a highly experienced teacher. She asked me if he was tactile defensive and if he had sensory processing disorder. I looked at her as if she was speaking another language. What in the world was she talking about? I read, and I read and I read, and I hit that aha moment, when I realised that this could be the very thing that was haunting me. I was referred to an Occupational Therapist. She observed him for quite a few months and confirmed that he was in fact tactile defensive and had sensory processing disorder, and to top it all off he seemed as if he was ADHD. So we went each week and I had to implement things at home to try and make things easier, but it certainly made sense to me by this time. I learnt to understand him and empathise with his situation. As this process started, we formed a strong bond of understanding each other. However, getting others to understand him was a whole different kettle of fish.
School time came and I certainly wasn’t ready for what I was about to experience. On day 2 at the new school I got that dreaded phone call that each mother hates. The teacher call! Houston we have a problem! Constant calls of oppositional behaviour, disrupting the class, speaking up loudly at inappropriate times, interrupting, talking to teachers as if he was an adult, lashing out when someone touched him, always wanting to be at the back of the line and fighting for his spot, not physically but verbally, and much much more. And guess what, most of these ‘behaviour’ issues happened to rear their ugly head at times when things were ‘turbulent’ at school, routines had changed, practicing for this, practicing for that, going on an outing and any other slight change. He would even point out to teachers that they weren’t meant to be doing something at a certain time if a lesson changed. The one day I got a call to say that he had ripped glasses off of his best friends face and that they were broken. Off to detention it was for him. This was the final straw for me; I was broken and had no idea what to do. I decided that it was time for him to be assessed by a psychologist as something just wasn’t right; it wasn’t making any sense to me.
Lisa and Tristan
He started seeing a psychologist, and I have to say she was and still is an angel in our lives. After about six months of seeing him I was called in to get an update from her. I was dealt a hard hitting blow of “Your child has Asperger’s”. All that was running through my head was autism, autism, autism and I was devastated. She calmly sat me down and explained everything to me thoroughly and it made complete and utter sense…the glasses had been ripped off as he was being teased and didn’t understand the difference between being teased and someone being nasty to him, he couldn’t deal with a change in routine at all, it made him insecure and frightened, when he felt anxious or threatened he lashed out verbally behaving in an oppositional way, he couldn’t bare people touching him as it felt like a threat, he didn’t like people in his own space which was why he would lash out, he couldn’t share a desk with other kids as he would get freaked out by the contact. Kids didn’t understand this and he was an easy target for bullying, as he would react, not ignore. He won’t eat at other people’s houses, or even go to the toilet there. You can imagine how this goes down a treat with family! He can’t go to other kid’s houses to play, as he lands up with a headache and starts throwing up. The worst part is trying to explain it to other parents. I can honestly say that a lot of them have distanced themselves from us, while others have been understanding, but not too many.
Once I’d digested all the information I could suck up, I started calming down and realised that it wasn’t as bad as I thought, and that we were really lucky, there are people out there that are in far worse situations than we were. It was like an insight that hit me right between the eyes and I realised that I needed to change my parenting style in order to get the best out of him. I read books, I asked questions, I spoke to other parents who were going through the same thing I was, and all of this helped me to survive and thrive.
I gained a very deep understanding of his reality and his world and what it felt like to be him. I empathised with him; I loved him and supported him regardless of his behaviour as I knew that this was when he needed love and attention most. I worked relentlessly with the school and the psychologist too to make things easier for him, and when the news was delivered to the school, they were supportive and bent over backwards to accommodate him and placed him with the best teachers they had. But we kept getting blow after blow. When he was 9 he was placed with an unbelievable teacher, and they connected on a really deep level. He loved her, respected her and it was the first year that we started seeing major improvements at school. Unfortunately she left in the middle of the year and we were handed a teacher on a platter that let’s just say was a disaster, to put it mildly. It scarred him, it hurt him and getting him through the rest of the year was traumatic and exhausting. He would come home every day with a headache, which we had now linked to his anxiety levels and then would start throwing up. He made it, finally, to the end of the year, with a lot of damage done in the process.
Lisa and Tristan
This year he was placed with another wonderful teacher, who had tons of experience with Asperger’s kids and things started off well, but that didn’t last too long. All of a sudden they were moving classrooms for different subjects and the wheels literally fell off. He completely blocked himself off, refused to work in class and sat and read a book all day long. How he managed to pull that one off I have no idea. The result is that we went from a high achieving child to a child that was almost failing. Something had to change and unfortunately that change had to be moving schools.
We are still in the very early days, and quite honestly it is harrowing. I worry myself to a standstill not wanting to see those tears at the end of every day and the begging and the pleading to go back to his old school. But, I will do whatever it takes to get him through this and if it means finding another school, then I’ll do that. We will get through it, we always do, it’s just another one of life’s little hurdles, not that I was good at running hurdles at school, but hey I’ve learnt.
I’ve travelled a long road, and learnt a lot along the way and if you are in the same situation, I can only give you the advice of learning, understanding and nurturing and importantly you have to adapt your parenting style to get the best out of these highly intelligent and very, very special kids. Stick to routines and they’ll thrive, be calm when the storms hit, however hard it is, and enjoy your child, as they are very kind-hearted and awesomely intelligent.
If you’re living with an Asperger’s child and want to reach out, I’d love to hear from you and what your experiences have been. It’s a tough but rewarding journey and worth the effort!
