Hello again,
This blog is turning out to be a great tool of procrastination when I should be doing 'more important things'... like horrid Terms & Conditions *urgh*
Anyway, I hope today's post gives a little insight into the world of autism, of both the families 'surviving' with a family member with this often misunderstood disability, and that of the child.
Firstly my son is not Autistic. That gets my back up but I know people don't think when they say it. My son is a 4 (going on 5) year old boy who is very affectionate, very clever, very observant and happens to have Autism. He is a person first and the Autism comes second. That being said...
History:
Our boy was diagnosed with Autism mid October last year (2011). He was a stressed out little boy (with stressed out parents!) with severely delayed speech, tantrums that started from the moment he woke up to when he went to bed, lasting anywhere between 20min and 3 hours, with 10-20min intervals before the next one started. Smaller tantrums (20mins) would be started over turning the door knob the wrong way (?), scratchy blankets in bed, misplacing 'Jack' (the much loved teddy). Larger tantrums could be set off over almost anything. I remember driving to his speech diagnosis appointment and he screamed half the way to Joondalup (we live SOR) because someone had pruned the trees on the side of the freeway. To him it was something big, it was different, it was unexpected and his lack of coping strategies and the way he perceives the world meant that the only way he could respond was to scream and do it loudly!
Sounds, faces, routines, changes (expected or otherwise), things that spin or go up and down, all seem to be perceived differently in our little man. He is now learning to cope, through the use of language, copying peers (this is a big one for us as he used to just watch and not interact with other kids) or taking time out in his room (a no go zone for our family and visitors, even me on a bad day). Another huge step forward came in the form of two (rather un-intelligent in my opinion) fur balls - our little Maltese Shitzues. One of which actually lets me boy lie on top of him, while he calms down from screaming.
Progress for us has come in the form of...
Now regularly asking 'What is that face Mummy?' as he does not read emotions or faces as we seem to do instinctively. He has to learn what faces mean and then learn how to respond to them. He would often, and sometimes still does, confuse laughter with crying.
He has only started to ask 'Why' this year, something most 2-3 year olds will do as they become interested in their world and their surroundings.
I often think the world seems very black and white to our little man, as if there should be set rules for everything. We all know this is not true, and for my boy this is often grounds for another tantrum.
Trying to explain to him that the dogs like to be let off the lead when being walked, when he has only seen dogs on the lead walking past our house, in movies, and in parks, is just not acceptable to him and hence another meltdown... a long one! All the way to the park and back. But we'll do it again, because each time that we do, he gets a little more used to it (desensitised) and the tantrum becomes a little less intense.
We are now done to about 5 meltdowns a day, 2 on a really good day. But only one day in 4 years 8 months without one at all! Still that is one more than none :)
I cannot speak highly enough of early intervention, no matter how exhausting. Our boy who only a year ago was diagnosed as 'severly delayed' is now 'average' and in a mainstream school with an aid 2 mornings a week. He comes home learning his letters, sounds and numbers like all the other kids. He is quite behind his peers but he is progressing well and that is huge given his diagnosis.
We have noticed from a young age that he has internalised new things, often waiting up to six months before speaking or expressing them out loud. He has come home some days, showing me some maths skills expected for a child 2-3 years older than him, only to be not able to repeat it 5 minutes later.
I think that is the hardest part as a parent, is seeing your child do something that is a massive achievement for them (or any 'normal' child), only to have it disappear a few minutes later. My boy could draw circles at 2 years old. He couldn't (or wouldn't) at 4 years old. And then one day drew a person with head, eyes, nose, mouth, arms and legs, albeit upside down. He drew another one a minute later, not even seeming to think about what he was doing - it seemed automatic. Then he didn't draw another person at home or school for 6 months. He went back to scribbling back and forwards. He now draws people and they now have 5 fingers and eye lashes! I cannot explain how excited I was to see eye lashes! Hehe. Progress in the form of baby steps :)
No, scrap that, the hardest part of all this, is watching not only him suffer, but our daughter suffer too. Continuous screaming on his part caused our almost 3 year old daughter to
stop talking twice. To stop smiling and enjoying life as she could not
make a move without setting off my son into yet another tantrum. To
realise that we had neglected our daughter in order to deal with our son
was tough to face as a parent. Then at 18 months old, she back-handed him good and hard across the face and they have been pretty much on par ever since - both with the tantrums and the love, the sharing and the fighting.
There is loads more on this topic, and the topics surrounding this topic including my background as a teacher, a special needs carer, a business owner, a mother and the contacts I have made through all of these parts of my life, all of which have tied together perfectly with what I do today. My Crazy Life :)
But I'm tired and done for today. Time for hot chocolate and pretending to work with Trace - one of my many support people :P
(Why is dinner off my fork better than dinner of his fork!???!)
Sorry for any spelling, grammar mistakes - I can't be arsed fixing it now.