Question by Mom of 4: Is your child?
Do you have a child with Autism? What is the best therapy they get? I have 4 children, 2 have Autism. They get Speech, Developmental and Occupational therapy. What is more important. I personally think that O.T. is the most important, but I need some advice. Feel free to share any stories of achievement, or anything pos. or neg. These are our loved children, we need to help each other.

Best answer:

Answer by Kathi
The best “therapy” my daughter has had has been me taking her EVERYWHERE with me, constantly teaching her, exposing her to new things, changing up her routines.

We had early intervention, and some in home ABA, but it was poorly run and more burden than help. She’s never required formal OT, but that might be because she’s always given herself the OT she needed with our trampoline and swimming pool. A trampoline (with safety net and padding) is an EXCELLENT form of OT that not only helps with coordination and muscle strength, but it’s FUN. Your other kids will love it too.

As for advice, I have some advice I’ve written up that I’m always sharing with parents who’s children are diagnosed with autism. I”ll be happy to share it here as well.

1) No matter how young your child is, start using social stories! Get used to making them up on the fly. Get familiar with the format. Go to http://www.thegraycenter.org/ to learn more and to see samples. Basically, a social story is a script for your child to help them understand proper behavior in a situation, give words to the different feelings they might have, and give them a resolution/solution. Since social situations are so difficult for our kids, they need concrete information to learn to navigate. They don’t work immediatly, but do soak in over time and make a difference.

2)Understand that people will stare when your child is having a tantrum. People aren’t necessarily mean, but they’re often ignorant about autism. People will offer you all sorts of unsolicited advice on how you should handle the situation at hand. I’ve heard everything from “She needs a nap” to “It’s ok to spank her you know” as well as some really awful obnoxious comments. How much you tell others is your personal choice. My daughter would never pass as “typical” so I’va always been open about things. I’ve educated many in my community about autism. You need to learn to develop a thick skin, and to shut out the world around you to focus on your child. Don’t be afraid to get down on the ground with your child when out in public and they’re really upset. Stay calm and focused on helping your child. It gets really easy to tune everything else out, and it’s kind of amazing. When you act this way, you actually get more understanding from strangers. They can tell by your actions that you’ve got the situation under control (whether you do or not) and are not a neglectful parent with a bratty kid.

3)Take your child EVERYWHERE that you can. YES it’s very hard work, but if you think of it as therapy, which it is, you’ll understand the importance. Expose your child as often as possible to a variety of situations. Use the social stories to explain in their terms what they’re experiencing. The more often you can do this, the better. Again, this is HARD WORK! But so worth it. If it’s really really hard, don’t make it a grocery shopping trip, but just a trip to buy milk or cereal. One or two items. Involve your child in the process, take your time, and make it a total learning experience. My daughter used to have rituals to get through the grocery store. She’d pick one small broccoli floret to nibble, two aisles over she’d touch several cans, or re-arrange the baby foods. Then we’d grind a small handfull of coffee beans which she would carry around and sniff. She’d do this every single time as a way to control the chaos surrounding her. I let her have her comfort rituals, so she had some sense of control, but I would also push her to learn and interact. I’d talk for her when strangers interacted with her, telling her “When someone says …….., you say …….” so she would get the scripts that matched different greetings. People would understand that I was teaching her and most would be pretty good about it. There were plenty of teaching incidents that most people didn’t get, but I trudged through. Keep the focus on teaching your child appropriate behavior. Eventually it will get in there!

Finally, in terms of self preservation and sanity, I offer advice specifically for parents.

Two of the biggest hurdles you face as a parent of a child with autism are Milestones, and Mainstream. These are self inflicted hurdles that will trip you up every time if you’re not careful.

First are Milestones….they pop up out of no where sometimes, sometimes they’re predictable. They’ll trip you up, knock you down, and throw you for a loop. There’s the birthday, family Easter Egg hunt, another child’s birthday party, Christmas….any event where you have a preconceived idea of how a typical kid would react, how you hope your kid would react. It seems to get harder before it gets better. You keep hoping for your child to get it…the difference between your child and same age peers starts as minor but becomes glaring as your child gets older and it just hurts. THEN you finally get to a place of aceptance and understanding. You change your expectations. Who said you have to wait till the middle or end of a birthday party to open presents, why not open them as guests arrive? Is there some rule book on how a birthday party for your child should proceed?….save the battle and enjoy the moment!

Second are Mainstream expectations…I remember when Kimberley was first diagnosed. I was told, “She’s so smart, so high functioning, she’ll do really well” I read “Let Me Hear Your Voice” and was inspired. I knew she’d be Mainstreamed by Kindergarten. When that time came, mainstream wasn’t an appropriate choice, and I found the perfect placement for her where she thrived. STILL, it was hard to accept that she wasn’t in mainstream. Here she was age 5, and STILL had autism, still requried so much help and accomidations to get through her day…where had I failed? The failure was the belief that Mainstream = Cure or at least victory of some sort. I came to understand that it’s more important for my child to enjoy school and be successfull in school than to push for mainstream before she’s ready.

My daughter, now almost 10 is a pretty delightful kid most of the time. She’s still no where near passing as “typical” but most people would not guess autism. She’s very independant, resourceful and creative. She goes to a mainstream class independantly for Science and Math, and is well accepted by her peers. Each child is individual in their needs and accomidations, but for my daughter, this has been the most appropriate path.

Know better? Leave your own answer in the comments!

 

 

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