24 August 2015

Ask an Autism Expert

Woodjie DID name them, I s'pose.
 I've been asked to do a post about helpful resources for helping autistic people.  This is one of those times I wish I had "the answers."  I have lots of helpful suggestions, and I'll pop a few here, but every child is different and the saying goes that if you've met one child with autism, you've met one child with autism.

I have four diagnosed children, and two who are, shall we say, eccentric.  So I can tell you each child needs something different from parents, and when you're dealing with an older child, the best way to know what that is is to ask him.  It's such an obvious answer that often we forget it!

Something we've been having trouble with. 
Lately we've been having trouble with Woodjie pulling out whole clumps of hair and he has bald patches all over.  He picks the hair off his body and his eyelashes.  He twists his skin as well, so sometimes he looks like an abused child.  In speaking to him, he is not sure why he is doing this, and he does want to stop.  That tells me it's not a discipline issue at all.  We have had a behaviour therapist in and we've been to the doctor.  Between the two we have various routines and things that help (such as a weighted vest schedule) and medication.  But he still does it sometimes.

It's odd to say, but the best help I've found has been the willingness to leave what isn't working.  Doctor isn't listening?  Buh-bye.  School won't work nicely with your child?  Homeschool.  And so on.  Sounds simple, but you know it isn't. 

But I also can't stick with what's not helpful, or with people who I don't think are on my child's side.  I've found bridges I thought would last through the ages are presently nothing but char.  And that has to be ok.  I've got to do my best job, even though sometimes it's not good enough - most parents feel that way some days, I'm sure. 

To parents facing a new diagnosis, I'd tell them that autism is not your enemy.  It's a difference and you have to work with it, but it is not necessarily a bad thing.  I never thought my kid's super-white skin was a bad thing, but I must make allowances for it if we're to go outside.  Not doing so is poor parenting.
Woodjie loves Pokemon.

It sort of sucks that we moms of autistics have to make so many allowances in this world so that our children can function.  It sucks even worse for our kids.  You're going to find all kinds of crazy stuff - and crazy and resentful people - in this world and most especially when you are dealing with something like autism.  My best advice after "listening to your child?"  Is to find friends.  Which is hard.  It is hard, hard, hard.  They pop up in unexpected places, though.  One place I've found friends - and even local friends - is the internet.

You found me, right?
Edited to add Woodjie's vest (back of chair) and Woobie cloth (foreground).  He also has a brush and we curry the kid like a pony.  Hey, whatever works, right?

I'll leave you with a few links I presently find helpful.  Feel free to comment with things that you find work for you.

ASAN - The Autistic Self-Advocacy Network

Sisterhood of the Autism Mothers and a Few Great Dads - facebook group

Autism Blogs Directory - site has not been maintained lately, but a good starting point to find other autism-related blogs.

The Explosive Child by Dr. Ross Greene.  A particularly good resource for parents of "difficult" children.






8 comments:

  1. How about having him carry around something else to "twist" instead of his hair? Like his very own "twisting" towel.....

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    1. You read my mind! We just got him a little square one this weekend! It is red on one side and has cowboys on the other.

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  2. Thank you. Thank you so much for taking the time to post all of this for me and for many others who are probably also looking for information. You are so generous and down to earth and that's why I've enjoyed your blog for so long. I have already picked up a copy of The Explosive Child and will check out the websites. Again, thank you. Karen

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    1. I think it will help a lot, but I will be honest with you: implementing the ideas will be one of the hardest things you'll ever do. It's OH so worth it, though. God bless.

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  3. This comment has been removed by a blog administrator.

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  4. ^Duplicate comment removed. Reading it's been "removed by a blog administrator" sounds so foreboding, yes?

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  5. When I read "Thinking in Pictures" by Temple Grandin, she talked about her mom saying something very similar. If it helps, keep going, if it doesn't....Let it go! I have one to add...if it is too expensive, don't be a martyr, mothers have been raising autistic kids since the beginning of time, I think, anyhow...Somehow they (your child or children) and you will survive without it.

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    1. It really saddens me to see parents cash in their retirements in the hopes of curing or therapizing their kiddos. If the child is still disabled at the end of the day, he certainly won't be able to help them when the time comes in any event.

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Non-troll comments always welcome! :)