Susan's Blog

Saturday, July 4, 2009

Girl Just Wants To Have Sun

Joyful Beach Stompies is not joyful for everyone…

Not only do I have to get my skin tan, I also have to get it thickened. Although I know in my mind what it is like being with Nat on a crowded beach, I had forgotten how the experience feels. I want to enjoy this week with him in Cape Cod, our favorite place, but other people sometimes prevent that.

We all know it is not polite to stare. Then why do we all do it? Why do parents not even notice their kids being knuckleheads and pointing and giggling at the tall thin young man speaking in an unknown language, stomping hard and chanting, bent over and laughing, somewhat like Rumpelstilskin?

Why is it sometimes the parents themselves who are guilty? How is it that one in 150 people are somewhere on the autism spectrum, and yet so few of the people on our beach recognize it?

Maybe they’re scared that Nat will somehow hurt them or do something horrifying. I don’t know how to reassure them. Today I tried just plain asserting the truth. Two women, a daughter and her mom I believe, where doing the looking, staring, whispering, looking again, meaningful/idiotic shared stare. So I went up to them and I said, “It’s just autism. Don’t worry.”
They looked annoyed at me. Was I wrong to assume what they had been up to? At very least they should not have been staring at Nat so frequently.

I had forgotten how torn my attention could be at the beach, between enjoying myself with my boys, and noticing people staring at Nat doing his Stompies. Why can’t people just deal with it?

Because it is quite a thing to see. I know that. Yes, it is how he expresses joy, but it is so intrusive to everyone else. He walks in a large circuit, painfully close to other people’s blankets. He waves his fists and yells out his stuff. No one else is doing that. All I can do is tell him to do it more quietly, and tell the others to stop looking. I have to be the Policeman of the Beach. And all I want to do is have sun. With son(s).


Sun with your sons is NOT too much to ask. Seems ignorance is still far more prevalent than autism. But I have no doubt that in two weeks, you will educate many people 🙂 Hang in there #1 Mom!

— added by Anonymous on Saturday, July 4, 2009 at 6:47 pm

Sorry you had to go through that … (((hugs))) It is never easy.

— added by Melissa (Betty and Boo's Mommy) on Saturday, July 4, 2009 at 7:27 pm

You'll never be able to control what other people think or say. I know as a parent of an autistic child what I can do is try to reduce severe self stimulatory behavior so my child can better fit into a world that is NEVER going to change just for our kids. Unfortunately it doesn't work that way in the real world. I know I will not spend my life running around trying to "educate" others since most people (as these women on the beach conveyed) don't really give a shit about being educated. Sad but true.

I'm also in the camp where I believe that a child should not be uncontrollably self stimulating all over the place. I'd rather teach my child replacement behaviors and contigent access to stereotypy knowing that if I don't, his life and world will be a much more isolating, judgemental experience.

— added by Anonymous on Saturday, July 4, 2009 at 7:42 pm

No words of wisdom, for I'm just another mom, dealing with the same thing today. My heart was sad and achy today for the same reason.

— added by Anonymous on Saturday, July 4, 2009 at 7:48 pm

I don't know that the world is never going to change…I always have hope. One of my little guys is just like that..spinning and stomping..going "eeeeee". It is who he is..If he sees someone staring he says hello…and then he will proceed to introduce our entire family to whoever that person may be..(I swear he would give out our social security numbers if he could :)) It is one heck of an ice breaker..
I guess the question for me is..if he doesn't care-should I? And, if we talk about changing how the world views our kids…doesn't that start with us? How we view them?…just a thought.

— added by kathleen on Saturday, July 4, 2009 at 11:19 pm

Kathleen, I know that you are right. Sometimes it all bothers me more than others; it's a matter of getting used to Nat again, on a daily basis. And while I think it's true that it is tough to change the world, but it does happen, one person at a time. Nat has taught me that. He has changed me for the better.

— added by Susan Senator on Sunday, July 5, 2009 at 9:54 am

When I get the really good stares – those that are just ignorant and you know what I mean – not the curiousity ones…. I look them in the eye and say "Have you never seen a child with autism before".

Who's embarrassed now???… it isn't me….

If he's in their personal space, touching them, their things, etc, then it's an issue b/c they too are entitled to a day at the beach.

If he's given them the personal space we're all entitled to… that's their problem not yours.

Maybe next time bring along his own personal support worker/friend to make certain he doesn't invade that space and to get him to go swimming, run along the beach, toss a ball. I plan to when I take the little one later this summer, he's entitled to have someone there for him too. And you're entitled to snooze in the sunshine as well.

Enjoy the sun.

— added by farmwifetwo on Sunday, July 5, 2009 at 10:01 am

Kathleen-it's a lot different when they are "little guys." Let's see in ten more years how acceptable it is to the people you encounter. The point is, focusing on changing the world rather than reducing stims is a lot less effective for the child and shouldn't this be about the child and NOT about the parent's feelings getting hurt?

— added by Anonymous on Sunday, July 5, 2009 at 10:06 am

I found myself staring at a family the other day at the pool. One of the children in the family was obviously "on the spectrum" and having a GRAND time! I wasn't staring because his behaviors were odd. I was staring because of the pleasure it gave me to watch such sheer joy and abandon. I did feel bad though when I caught the mom scowling in my direction, so I went over and introduced myself and told her what a delight it was to watch her son and his obvious happiness. She smiled, hugged and thanked me.
Sometimes as moms we just need to have our kids recognized as just being what they are: wonderful, lovely kids.

— added by Jen on Sunday, July 5, 2009 at 10:14 am

Yes, yes, yes! You are all very level-headed.
Farm Wife Two, you are very wise. I didn't bring any help, and that would have been good. So today, I was mindful of other people's space, and I was reminding Nat of that, and they appreciated it, and he got it. Much better day today. Thank you all!!

— added by Susan Senator on Sunday, July 5, 2009 at 6:46 pm

It's a learning experience. People stare at Jarrett and I want to say What are you looking at? Sometimes we borrow a shirt from Uncle Matt that says Keep Staring Maybe I'll Do A Trick. We had an incident a week or so ago with Jarrett and a man with an artificial leg( Jarrett:Hey look at that guys leg!!) that was ateaching experience. I try my best to help him understand that it's not nice to stare or shout comments but how can he learn with other peoples ignorance staring and commenting on him?

— added by cameramom on Monday, July 6, 2009 at 12:00 pm

I used to work at Nat's school and have raised my 2 children, ages 4 & 8 not to stare at folks with disabilities. I, in fact, say if we see someone on the spectrum – its just autism – its the way he/she was born – don't stare. Amazingly, they don't stare. We were at Nauset Beach yesterday and there was a young autistic boy doing the stompies and how I marveled at how my 2 were not staring while the majority of folks sadly were staring. I did marvel at the young boys parents – who were oblivious to the stares of many and were enjoying their moment in the sun with their son. You can't change people – just enjoy yourself with Nat.

— added by Anonymous on Tuesday, July 7, 2009 at 9:42 am

Jared had an atomic meltdown at Target, and whooo did we attract the gawkers. I must have conveyed my displeasure at the staring clearly enough, because the group of Target employees were huddled together, looking terrified. Just a delicate southern flower, I am. After I got Jared into the car, he kicked out my side window while I was returning the shopping cart. Thomas kept telling his bother he was in the BIGGEST trouble, and then I terrified the boys with my seething silence – which is completely atypical.

The good news is that Jared's father and I are in agreement on our next treatment option (I know, WOW!), and Jared genuinely acknwledged responsibility and expressed empathy for the bruises on my arms.

Always look on the bright side of life……Lisa

— added by Anonymous on Wednesday, July 8, 2009 at 4:11 pm

I was having one of those sort of days recently.

Amy, my 8 year-old, wanted to look at earrings and girly stuff at Claire's. I kept Jack outside of the store (it's really cramped) until she had browsed successfully. I took him in so I could pay for her earrings. Of course he screamed, scratched, kicked and bit. People stared.

I hurried to finish checking out and get the hell out of there … The woman working the cash register smiled at me and asked me to give her my hands.. (Weird I know..) I placed both my hands in hers. She smiled at me and told me not to worry. She knew he had autism. Her son did too…

Hot tears rolled down my cheeks. I couldn't speak. I could only nod .. She was just so very kind …

Hopefully I'll remember it when I'm on the beach and people are staring at my stomping, screaming, beautiful boy. Those random moments of kindness mean so much.

— added by Judith U. on Thursday, July 9, 2009 at 12:35 am

People still don’t get it. They think autism is a guy like Rainman, reciting baseball statistics and condemning the quality of underwear from Kmart. Maybe, because your son is tall and good-looking with rock star hair, they thought he was tripping. Add the encroaching on their beach blankets (people are protective of their personal space) and you have a perceived threat. It’s not true and it’s not fair, but there you go.
Plus you know, we homo sapiens are always looking and judging, evaluating and comparing.

— added by Palmer on Wednesday, April 21, 2010 at 3:51 pm