Lack of qualifications
There are many problems, sorry ‘issues’, associated with autism.
The primary issue is a serious lack of qualifications in parents.
Whilst the averagely pregnant person isn’t qualified for parentdom, neither is the average parent qualified for autism. This mismatch may have a profound impact upon the overall well being of a family.
Whilst there is a lot of hub bub about early intervention for an autistic child, very little is heard about early intervention for the parents. For myself, I can confirm that I was very ill equipped in the autism department. Of all the many useful and fascinating pieces of information I had stored away, very few of them had any relevance to autism.
As we all now know, getting a jump on autism, would be tricky because of the variety pack nature of the condition. There is no point in nipping out to buy many pairs of nail clippers to distribute around your entire house and handbag, if it turns out that your child doesn’t have that kind of autism. Similarly, there is no point in spending your pregnant months on a crash course on speech pathology, if it later turns out that your child doesn’t have that kind of autism. I think that basically, we, the parents, are asking for some streamlining here. What we need is predictability so that we can formulate a plan, to make the future more certain, and adopt routines and campaigns……………..
I think I should have completed one of those multiple choice sheets whilst I was pregnant. One of those papers where you colour in the little preference boxes, to narrow down the field a little. Things that you want in your child. Things that you believe you can cope with.
For myself, I wouldn’t have wanted a mucky kind of a child. I’d much prefer a shiny clean one that sparkles a lot. I’d also want a nice placid one that I could cuddle a lot, a bit like a teddy bear, where everyone would say ‘ah, how cute.’ I wouldn’t wish to spend a lot of time catering to nutritional needs, as that would be so time consuming and tedious. Ideally, it would be nice if they had a hobby, something that was entertaining and perhaps educational.
It’s not a long list, but it’s an important one.
And do you know what? If that had been my list, not that I had an inkling of the life to come, that is exactly what I have, one way or another.
Stumble it!
September 14th, 2007 at 12:15 am
i think a lot of us parents are more qualified than we realise. my son has adhd as well as aspergers/high-functioning autism and i certainly know a lot about adhd, having had it all my life, although of course never being diagnosed. my stepmum, who brought me up from when i was 8, was driven into apoplectic rages because, in spite of her yelling at me every time i spilt talcum powder on the bathroom floor or left tissues in the pockets of my clothes to cover the entire wash in confetti, i still did it. she thought i did it to annoy her. i still do it now and the only person who has to pull off all the tiny bits of tissue is me! and don’t even start on cooking and wandering off and forgetting something was on thestove…
my husband and his family (who i would say are all somewhere on the autistic spectrum with one brother with quite clear undiagnosed aspergers) totally get the asperger behaviour - indeed my mother-in-law is full of stories about her 4 boys as kids which are so familiar to us.
what has interested me is how many autistic traits i have that i would never have known are autistic without my son. a huge sense of smell (when i was a kid, if another child played with my toys when i was out and then left i could tell which child from the smell!) really sensitive feet and so on.
when my son was diagnosed my sister said they could not have invented a better child for me if they had designed him specially. and she was right.
September 14th, 2007 at 5:48 am
So, so true! I am the most ill-equipped parent in some respects. I am greatly challenged. I have issues. But at the end of the day, my check-boxes are all full.
September 14th, 2007 at 9:19 am
I totally agree with everything you said especially the part about early intervention for parents.
I constantly wanted to know two things from the early intervention teachers:
1. What top three things should I be working on at home and what is the best way to work on them? I remember the OT gave me a long list of things that I could do at home (I think it had about 100 things on it) with no indication of priority. Was I supposed to do them all? Was I supposed to do the ones that I liked?
2.What can I expect for the future? The only answer I heard from this question is something to the effect that they are all so different and we can’t predict. Surely they could have run some training sessions that combined the professionals in the area with the information from the parents in elementary, middle and high school.
September 14th, 2007 at 10:05 am
I am currently reading a book on the “The Miller Method”. I have the 2007 book from the library. It’s like RDI/Floortime. Which leads me to my opinions on why people think ABA is the method of choice.. where there are 2 definate theories out there that say it isn’t…but I’ll blog that tomorrow.
What I wish is that the Dr handed you a list to get started. From funding, to school paperwork, to books to read on different therapies etc. For 6 yrs now… I’ve been working my way through the system and it’s a lot of work that I’m not convinced was necessary.
I still think a child’s best teacher, delayed or not, is their parents. Contrary to whatever therapists or teachers think.
S.
September 14th, 2007 at 10:10 am
Another in agreement!
I would also like to add that although we may even think we are prepared, it is a whole different story when it is your child.
For almost 20 years, I have worked with a multitude of disabilities- including Autism. It amazes me that with all of my “experience”, I still struggle with rearing my son.
September 14th, 2007 at 11:01 am
You’re terrific–and right. You have great kids, and they, in turn, have a great mom.
September 14th, 2007 at 1:38 pm
I should get started on my wish list for the child on order while it is still cooking. Ill equiped does not even begin to describe what it feels like, especially in the begining. I have learned that I can live with more than I ever thought, although I am prone to complain about it.
September 14th, 2007 at 1:57 pm
I remember someone asking me “How do you do it?” Like I was accomplishing some great feat raising a son with autism. I hadn’t really thought about it. I didn’t know how to respond. But now, well, now I think I know what I would say. “I love my kids. I do what I can to help them. Sometimes it’s not enough, but I do what I can. Isn’t that what all parents do?”
September 14th, 2007 at 7:31 pm
Ditto what Melissa wrote! The wish list…reminds me of a quote I came across recently:
“You’re what happened when I wished upon a star.” Made me think of Nik right away!
September 14th, 2007 at 8:33 pm
I often wonder “How do they do it?” then I look at my kids and I truly would do anything for them so that is how they do it.
September 15th, 2007 at 6:04 am
Absolutely beautiful writing about a mothers true, unconditional love. Your children are so very lucky
December 26th, 2007 at 1:36 pm
[...] Parents all over the world, endeavour to do the best for their children but sometimes we have to admit to ourselves that we’re all just “muddling through.” [...]