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Tuesday, August 05, 2014

What Would You Do--Then and Now #SensoryBlogHop

Have you ever seen the show "What Would You Do?" It's a hard hitting show that sets up scenes to see how people react. The show is hosted by John QuiƱones and he gets people to ask of themselves some pretty tough questions. 

I love that show but haven't gotten to see every episode. I saw a post last week on a friend's facebook page that said,
"While [my son] doesn't have a diagnosis of autism, he does have some difficulties including not being the "nice little well behaved child who sits still and doesn't make a sound". We don't go out much. And never out to eat. Causes too much anxiety for me because of people like that "diner". The other diners give me hope."

Then I watched this episode from "What Would You Do?" It's one I've never seen before. And I cried...a lot...

So what would you do in that situation? I don't have to wonder...I know. Because my second child has autism. And when he was 3-4-5 years old, eating out was it's on circle in Dante's Inferno. I know the horror of being stared at, nobody ever 'said' words to us, but we got 'the look'. I knew people were whispering about us. We were the center of attention. It was hard. It was embarrassing, and it wasn't really much fun and eating out wasn't a 'break' from cooking. It was a different kind of work.

My husband and I had a game plan each week. Who would 'eat fast' and who would stay? If you were eat fast, you didn't take care of kids or anything--you Because the moment Nathan started to cry, melt down, get loud, etc.,  you had to move. You had to take him out of the building, walk the parking lot, sit in the car, do whatever it took for the next 30 minutes to keep him from disturbing everyone else in the place so the rest of the family could eat. If you stayed, you had to fill pop cups, get napkins, help feed remaining kids, but you got to relax and enjoy the meal more than the 'eat fast' parent.

We went out every Sunday after church. It's a tradition in our family--one that dates back to my own childhood. I wasn't willing to give up one meal out a week and lose that tradition in my life. So we made it work. This is when we didn't know Nathan had autism--we were told (repeatedly) that he did not have autism. Often we were told he didn't have problems, but screaming and crying in restaurants doesn't seem normal either.

Once we had his diagnosis, it explained the 'why' of his behaviors, but we refused to let autism be an excuse for cancelling this one tradition we were clinging to. And, over a very long time, he got better at it. He learned some tools and coping skills. We bought earplugs that he could wear in noisy restaurants. Just $2.69 wax earplugs from the store and we could avoid crisis mode for an additional period of time.

Today we eat out a lot--probably more than a lot of other families. Not that it's a good thing in some ways. But it's a good thing for us that I don't take for granted. So watching this episode (which is old because the new numbers are 1 in 68...not 1 in 88) brings back a lot of memories for me. I again feel the shame, the horror, the dread of waiting for someone to tell us to leave and not come back. And I cry. I cry for those who are in the trenches right now like my friend who posted this clip. I cry for those who defend the boy in the restaurant. I cry because I have lived and breathed the Autism Society of Nebraska since mere weeks after he was finally diagnosed. I sit on the state board, I go to DC and lobby for other kids with autism, I work to make connections and cultivate contacts so we can promote not just awareness, but acceptance and inclusion. 

And, as a method of catharsis, I joined this blog hop. Check out the other articles, you will be amazed at these incredible people. 


Mommy Catharsis said...

You referenced Dante's Inferno and used the word, catharsis: what's not to love?

Thanks for sharing. I completely relate to the restaurant scenario and determining who will "eat fast."

Coolestmommy said...

I love the word catharsis. It explains a lot in one little word. :-)

Unknown said...

I totally relate to this post Robyn! I am so thankful that my child has some foods he will eat. It wasn't long ago I attended my son's lunch at preschool to get him to eat a few bites. Eating programs go a long way and so do earplugs!

Kim said...

Thought provoking post, Robyn! Thank you for bringing to light your experience, and sharing that episode of WWYD.

Full Spectrum Mama said...

Jeezum Crow -- RESTAURANTS.
Who ARE some of these people?
I applaud and share your instinct to Just Keep Going. Sooner or later it's got to get better as these stats increase...riiiiight?

Lisa Trudell said...

I appreciate how you make it work and don't let things get in your way. I also applaud you for all of your efforts in the name of Autism.

Unknown said...

Beautiful post. The good news? I see the way many (not all, but many) children behave towards their peers with autism spectrum disorder. I teach teenagers, and the majority are understanding and kind. When they recognize differences that are apparent, many tend to be more understanding than adults in similar situations. Thanks for sharing your story.

Odyssey Through Nebraska said...

Was so blessed by this post for several reasons. First of all, I appreciate those who are real and transparent. I also was challenged to see life from a different perspective. I had never pondered how challenging being in public and out of routine could be for certain children. I admire your perseverance and the fact that you are a walking example of showing grace. I also was unfamiliar with that video series, and I was quite glad to see the diners come out in support of the struggling child.

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