A journey of nearly 4 years now and still really we don’t know ‘Autism or Not?’.
The professionals involved say not, they put it down to his Speech and Language Disorder which impacts on his social communication skills.
Bring MacKenzie up is a roller coaster and has been a steep learning curve even for myself with all the background training and experience I have, so being a parent without that advantage must be a lot tougher.
In the early days I felt like a bad parent, that I had done something wrong but I think I am stronger now and more confident…..it does come in time.MacKenzie has lived on visuals since about the age of 2 and a half years old. ‘Now and Then’ pictures, a daily visual chart which consisted of four photos of what’s his routine would be for that day. It was really tough planning your day in photos and then obviously not breaking it after showing him, I’ve done that a couple of times…..the amount of pain you cause.
Now at 5 years old nearly 6 we are onto a 3 month visual calendar and have been for the last 6 months. Quite a complexed set up for someone that young but he likes it and can understand the coloured key code which it is set by.
When out and about I can now tell MacKenzie what is happening now and then, he prefers to say “first and then”. As long as I keep it to no more then 3 things ie. shops etc he is ok.
The only other problem is when out and about MacKenzie gets over stimulated in a lot of bright, loud environments and then you can mentally lose him……so everything can go right out of the window. His voice will go up several levels and you will loss eye contact completely. At this stage I will hear the comments or have them directly said to me “what’s that child had for breakfast” “has he been on the smarties” “he’s full of beans” “he will sleep tonight”. I know these comments are kind of harmless but when you hear it nearly every time you go out it really hurts. All eyes on you and your child just on a simple trip to Tesco, this just makes life ten times harder than what it already is. Not being able to physically see a disability people are so quick to judge. A disability in which a person see things different or may react in a different way to how we might should be take as serious as seeing someone in a wheelchair.
Since MacKenzie has been able to communicate more he once said while in a supermarket “loud beeps” when I asked him about this he told me he could hear the tills beeping (the scanners) and we were not anywhere near them, even listening very hard I still couldn’t hear. We don’t realise what it must be like but just think about next time you go into a shop or supermarket turning all the background noise up so loud you can’t think straight. Being in this different world has made me look at so much, for instant when we go into a shop the background noises are there we just don’t think about them or take much notice of them. We have the ability to cut them out and get on with the task ahead…..but what if you couldn’t.
MacKenzie also has a diagnoses of Hyperacusis (this is a condition characterised by an over sensitivity to certain frequency ranges of sound, a collapsed tolerance to usual environmental sounds). At the same time was also diagnosed with Tinnitus.
There is no cure for these problems it’s just something we and MacKenzie have to learn to manage. He doesn’t mention the tinnitus alot just sometime specially if its quiet like at bedtime and he can become very frightened that the bees are there. It’s really sad but there is nothing I can do. The hearing specialist recommended to talk positively about the bees or that he may like to name them but he prefers not to. The good thing about it is that if he had have developed it much later then he would know a difference, but he thinks we can all hear them. I don’t agree with lying and I feel really bad when he looks scared and asks me if I can hear them, I tell him no because he must have super powers and only special people can hear.
There are also other problems MacKenzie has or has had and learnt how to mange which another child would naturally just get on with. He was placed under a Occupational Therapist just before starting school in June 2011, for his sensory problems. The results were that he had problems with auditory processing, tactile processing (tactile defensive) and a sensory seeker.
Just after learning to walk he would come upto me screaming holding his hand out for me to brush his palm over with my hand but wouldn’t stop screaming if I didn’t do it twice, everything had to be in a certain way and in a routine. I can remember when he first started nursery telling them that he would hold his hand out like it was dirty but if they brushed over twice then he would stay calm…..I thought I was nuts for telling them but at that time I didn’t care about what I sounded like just that it was so important to him. Things have got better since then he can now touch water, sand, grass, snow all the things we take for granted. He does manage himself well and will slowly on his own introduce himself first before jumping into these tactile things. Washing hair is still an issue but slowly slowly…..from shampooing hair once every 6 weeks to maybe once every 3 weeks (good job he is a boy). Staying with the bathroom theme about 18 months ago MacKenzie couldn’t even sit on the toilet seat after someone else because he said it felt soft and he would be so distressed and angry he just couldn’t, we had to wipe it several times just to get the hardness and coldness back before he could sit on it. But it goes to show that the problem still remains its just how he comes to understand and manage it in his own mind. He will now sometimes say”l like your soft now, it ok”.Clothes and bedding aren’t has easy like with coats he will like the lining of the inside of the main of the coat but as soon as his arm goes through the lining of the inside of the sleeve (which is often different) he will take it straight out and say he can’t wear it. We are alright with t/shirts but cotton shirts etc is a no no. Recently they had a dress up day at school and he didnt like the feel of the fabric of the pants and therefore on his own rubbed his legs up and down quite hard and then pressed them firmly with his hands before putting the pants back on But at least these days we don’t get the screaming he will say its doesn’t feel right. He is really clever at now managing these problems and we do get less outbursts, sometimes in certain situations/environments he will now communicate and say he needs softing, he response really well to deep pressure touch when needs calming.
All these issues have been mainly put down to him having a speech and language disorder and not autism but yet we live that high function autism life. Everything has to be taught to him which is normally just picked up, you can’t just presume he knows it even with basic things.
His language is doing really well now he does mix up he and she a lot still and it can be quite funny at times when you are out and he is talking none stop loud and says “he is very tall” when quite blatantly obvious it’s a lady. Literal language is the hardest has he has just started to understand that saying “you are a silly sausage” is a joke, so in every day life I do have to constantly watch what I say or do a lot of explain which might then go right over his head……see what I mean!
Please feel free to comment if you can relate to any of these issues I have brought forward or feel like you are in similar situation.