Tuesday, March 10, 2009

Try this Tuesday: Helping others help your child


One of the things we have struggled with over the years is whether and how to share information about our sons' autism & sensory processing disorder in a useful way with those in the community who interact with them on a regular basis - gymnastics teachers, t-ball coaches, church teachers, summer camp leaders, etc.

Here's the dilemma as I see it. Do you tell people about the autism and risk them treating your child differently or somehow expecting less of them? Or do you take a chance that maybe they'll blend in just fine and not say anything, in which case you risk a lack of understanding or worse if your child has difficulty or displays unusual behaviors. There's no right or wrong answer, the conclusion we've come to is the ever-so-definitive "it depends." It depends primarily on what kind of interaction the person will have with your child and how often they'll be working with them.

If someone is going to be working with your child on an ongoing basis, it's a good idea to clue them in so they can be most effective in helping your child be successful with whatever activity they're engaged in. Here are some tips for how to do that.

1. Approach them in a cooperative, non-adversarial way

You want to partner with them to help your child be successful - a goal they presumably would share with you.

2. Share simple, easy-to-understand information about autism / sensory issues / whatever the specific issue is

Sometimes I make a handout to give people that they can read on their own. I keep it short (one page or less) so as not to overwhelm anyone with too much information. I can always provide more if they have questions or if specific issues come up. I also try to tailor it specifically to whichever child the person will be working with, because each of our kids has different areas where they have specific challenges and strengths.

3. Maintain open communication

Ask them to keep you apprised of any challenges and also to let you know when they find something that works well for your child - it may be something you haven't thought of that could work well at home too.

4. Try to observe so you get a sense first-hand of how your child is doing

Observing is helpful if you can do it without being overly distracting for your child or the rest of the kids involved in the activity (depends on what the activity is). If your child is like ours, we often get limited or no responses when we ask them for details about their day or the activities they are in (or we might get responses that really don't make sense unless you were there).

I will admit to having mixed results with this approach, sometimes it works out great and other times, not so much. Some people are more receptive than others. Sometimes people are great and really try, but the boys still struggle for any number of reasons.

There are times when we opt to not say anything up front and just see how it goes, and we've had mixed results with that too. Sometimes the boys adapt just fine and they do great. Sometimes things get off to a rocky start but end up ok. Other times, well, not so much.

I'm curious to see what has worked for other families too.

For more Try This Tuesday, visit 5 Minutes for Special Needs.

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Anonymous said...

I'm thinking either you majored in Common Sense in college or you are naturally pre-disposed to truly understanding and conveying reality. Both?

Another excellent post.

Parenting is a constant judgment call.

Trish on March 11, 2009 at 5:43 PM said...

I agree with Barbara - you seem to have a pretty good handle on this one. It is such a difficult thing. When you do share, there is always the "what if" thoughts of wondering if things would have been fine if you didn't intervene.

I find myself telling people less often now, but when I do, it is more matter of fact and, like you, I keep the details to a minimum unless they are interested in learning more. (Except for the school professionals who need to keep learning - and I will keep giving them insight and info even if they don't ask for it!!)

Amazing_Grace on March 11, 2009 at 7:58 PM said...

Since it is obvious that MONK is different I usually tell others that he has autism. I also tell them that he has been on the honor roll since 6th grade and he is like that character MONK on TV. This usually does the trick and no one seems to treat him differently and now they understand why he acts so odd at times. :)

Elizabeth Channel on March 12, 2009 at 1:10 AM said...

It's a tough call and it's something I definitely struggle with a lot! I'm so glad you brought it up because I look forward to everyone's responses.

We have a hard time here because it's quite backward and at times when I've thrown a real diagnosis out, we've been asked to not participate in the activity because it is not set up for "special needs" even though the people involved did not know my child or his capabilities. That being said, we've stuck to terms people can understand--issues with attention and self control, etc. Once I start talking about SPD, eyes begin to glaze over. It's a tough town if you don't fit in the box!

Julie on March 12, 2009 at 1:20 PM said...

I have used many of these techniques. My daughter has Fetal Alcohol Syndrome. I am teaching her to advocate for herself. She is, after all, 17 and 'almost and adult.'

She doesn't like telling people that she has FAS. So, I have taught her to share functional deficits rather than a diagnosis. It is much easier for her to say to her manager at Arby's, "I can't remember how to make the sandwiches if you have me do till for two weeks. I need to do sandwiches at least once or twice a week," than say, "My brain is damaged by alcohol."


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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