My initial reaction - utter despair. I used to read a lot as a kid, I remember reading about autism and thinking, I could cope with a child who was blind, or deaf, or had some sort of other physical problem, but I never want to have to cope with a child with utism, it would be so heartbreaking.
The reality that is so very different, is why I now cope. SO many of my preconceptions have turned out to be not true; many of my fears are totally unfounded. Instead of the emotionlessblob self-harming in the corner, I have discovered that my children are loving, intensely loyal, honest, hard-working and (when they're not feeling thwarted) get a lot of enjoyment out of life, sometimes from some very unusual places and in surprising ways. The unpredictability of what they do and say can sometimes be challenging, but also can be exciting. I realise now that most of what I read as a child was based on preconceptions and misunderstandings. The way we see autism is constantly changing, I have at times found myself discovering things about my kids that are still right on the forefront of understanding. As a result, I've had to learn to trust my parenting instincts and to "go with the flow" if we stumble onto something that seems to work well.
For example - if there is any communication delay or difficulty, get access to 20Q, either the website or the hand-held game. It just happens to match an exercise difficult child 3 was given by the speech pathologist. The purpose of the exercise - you think of a word such as "apple" and then the child has to tell you everything he can think of, that connects to the word "apple". They grow on trees. They cna be red, green, sometimes yellow. Sometimes a mix. They taste sweet. Apple trees are shady and fun to climb. The leaves are green, thin and pointy. The bark is rough. Apple pies taste wonderful, especially with ice cream. Baked apples are delicious in winter.
And so on.
The purpose of this exercise is to help the child's brain put in a lot of the connectivity that is often reduced or lacking, when language has been delayed. Even though difficult child 3's language USE is now not only within normal limits, it is superior in a lot of areas, he hasn't got as much connectivity between items in his head, which means his word finding skills are slower. The exercise helps. We were driving around on holiday, practiicing this exercise, when we found the 20Q game in a shop, and HAD to get it. It really is effective at helping this exercise along, we found. So we bought one for te speech pathologist as well!
THat's just one example - something we stumbled on ourselves, and shared. It's a bit like this, with an autistic child at the moment - you beclme the expert on your own child but often make amazing discoveries. Meanwhile you have a child who wants to please you, who wants to do the right thing, but who often has difficulty trying to learn what IS the right thing, and how to manage it in the confusion that is life. Helping your child see the pattern in the world, helping the child discover that life doesn't have to be scary, is very rewarding.
It's not all wonderful, Jlady. I'm sorry if I made you feel as if you have no right to be upset - you have EVERY right. But it DOES get better, there are some blessings along the road that will surprise you.
I'm glad you've made contact with a support group in your area - they will help you with good ideas as well as things you can access in your area. The way other children with autism tend to support one another is beautiful. Of course they will also fight at times (especially if one obsession clashes with another!) but I've observed, my autistic kids have tended to choose as best friends, other people with autism or autistic tendencies. Again, the intense loyalty seems to really kick in.
Something else to bear in mind - you often find autism in families where there is also high IQ. Generally the autistic child can also be extremely bright, but testing doesn't always show this. Be very wary of psychometrictesting where splinter skills are found, but the tester still averages out all the scores to give you a final IQ figure - according to my understanding of how these tests are supposed to be analysed, if there is a big gap between the highest sub-scores and the lowest (more than about 6 points, I think) then the sub-scores should be left and NOT averaged out. The useful information form such a test would be, "Your child has scored in the superior range for X, Y and Z but well below the average in the following areas..." and you USE this knformation to help your child. Often the scores break down to a verbal performance, and non-verbal performance. A child with language DELAY may continue to get a lower verbal score for a few more years after his language comes back into the normal range (assuming it does - and it can) but the scores can change over time, as the child's abilities are honed. They take longer to get there, but give the child time and support, as well as sometimes intense remedial therapy, and it's sometimes magical what you can achieve, when it suddenly clicks.
We're in the process of trying to get difficult child 3 reassessed. It's been quite a few years, and the last time he was tested, they focussed mostly on non-verbal (which scored through the roof). At the same time his school counsellor did another assessment on him (without my knowledge or permission) and, as usual, she averaged out the scores and got a very different answer to the one I'd just had done through a research group. The research group had said, "We can't give him an overall score, because his sub-scores vary too much. But in his high skill areas, which cover most of the test, he scores in the 140-145 range. Low scores in other areas are due to the autism, rather than a true indication of his potential."
The school counsellor's report was verbal, and saying, "He does well in some areas, not so good in others. But overall he's doing very well indeed, considering his IQ is only just above average, he's not as bright as you thought. So it's amazing how well he's doing in his exams."
The idiot school counsellor - I wanted to tell her that he did well in his exams, because in those subjects he IS "smarter than the average bear." But it was in her interests, and in the Dept of Ed's interests, to average it all out in order to not only find NO high ability in anything (which would need extension) but to also find no learning problem due to low IQ (which would need remedial support) THis way they eliminate entirely, the category of gifted but learning disabled.
JLady, you have a smart older son. He's possibly a signpost for you to the intelligence level in the family, because members of the same family tend to be within 10 IQ points of each other. We also choose partners who match us in intelligence.
Talk to the people in your local group, maybe see if there is a sporting event or family picnic day you could go along to, to meet some of the other families. It's likely to be intense to begin with, but also probably fun as well. It's also interesting to observe how other families deal with their kids. I'm still learning a lot, even though difficult child 1 is 25 now and you would think there would be nothing left for me to learn! But they are all so different!
Another thing I have discovered about myself - I am now so tuned to Pervasive Developmental Disorder (PDD) in various forms, my famiy reckon I see it under every rock. I think they're right - because it's there to be seen.
You'll be OK, JLady. But if you need to go have a good cry, feel free. You will need to, at times. It's OK. Just be on the lookout for the good stuff as well. It IS there.
Marg
Marg
