Autism and advocacy: are parents always right?
Monday February 16, 2009
Just to get my week going with a bang, I thought I'd blog a bit about a subject that's been under my skin for quite a while. That is - the assumption by so many parents that mom and dad, because they ARE mom and dad, must know exactly what their child with autism needs. Not just in the ordinary way ("when Johnny sounds like that, it means he's hungry"), or even in the "mommy ears" way ("it's too quiet up there") but in a mystical way that's far beyond all ordinary powers of knowing.
Apparently, there are moms and dads out there who magically know that their child with autism needs biomedical intervention X, will only thrive after treatment from therapist Y, or must receive services in a particular setting with specialized equipment provided at great expense through agency Z. Their child receives these treatments or services and - only six months or a year later - develops extraordinary new abilities.
As a mom, I do know when my kids have been stressed too much. I can see a meltdown coming a mile away. And I can make a good guess when a topic or activity will be of special interest. I know what foods my kids like, and when they're too tired to do a good job with school work.
But over and over again, I'm surprised by my kids. And that's a GOOD thing!
I was surprised when I found that my son actually WAS willing and able to pick up a paintbrush and help to paint the set for the local production of Pirates of Penzance. I was amazed when he decided, based on the promise of a prize, to bowl one-handed through three entire games. I was impressed when he had an eye-opening conversation with his speech therapist - and shared things I'd never heard before.
Most importantly, I've been taken unawares by sudden developmental leaps. Suddenly, a boy who had never asked a question is wondering aloud why his sister seems so sad. Or where his toy frog has gone. Or whether we'll see his grandparents soon. Had I been right in the middle of trying a new therapy, I would have assumed that it was the therapy that made all the difference. But lucky for me, I've backed off on the therapies. And so, when Tom makes leaps, I know to whom the credit is due. It's due to... Tom.
Over the years, I've learned that there are many things a parent of a child with autism can and should advocate for. A solid academic education. Appropriate supports in school and in the community. Funding for treatments, education, respite, and adult care.
But when parents assume they're always right, I've found, limits are placed on the child, the therapists, and the possibilities. If only Dr. X can make a difference, Dr. Y never gets a chance to try. If only setting A is right, we'll never know if setting B could have been better. And if no one but mom and dad get to make choices for a child with autism, the child himself never gets to see what he can do on his own.



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HOLY COW!!!! FINALLY A VOICE OF REASON!!!! Are we all listening??? Helllooooo??? All of you who are SO sure you know exactly HOW things should go and are SO certain that ______ (name the institution) is out to get you???????? This kind of logic goes to vaccines being the reason for ALL autistics - also goes out to Jenny M who is SO sure her child is *cured* now due to ________ (fill in whatever the newest thing coming down the pipe).



I've found there are TONS of variables - her mood, her development, the chemistry between her and whoever, (and sometimes SHE likes them and *I* don't and vice versa) , the time of day, week, year - you name it. I've resigned myself to the feeling that "the teacher comes when the student is ready" and to look at things with love, grace and common sense. I've also learned that it's OK to be #2 (or 3 or 4 or whatever) And the newest thing I'm trying very hard to teach Sal is it's OK - in fact preferable NOT to be perfect. To "go with the flow". That if someone makes a comment - that it's ok to not listen (that is - as long as they are not your teacher, aide, or parent) :-)



No, parents DON'T know everything - in fact, I've found that I know very little sometimes. One thing I have realized is that I DO know SOME "habits" of hers. And this fascinates Sal. I know when she has to use the bathroom and she always asks (as she's sitting on the potty) "How you know?" But aside from that - I know VERY little. Her and I are connected and there's times I get a little "tingle feeling" and find out later that something happened. I SO wish I could know what goes on in her head. Like for instance - why was she a monster yesterday at school? What made her not want to comply. Was it a specific thing? Or was it an independence thing?

Where's the owner's manual?