Susan's Blog

Friday, September 24, 2010

Eunice Kennedy Shriver Day is 9/25

Tomorrow, September 25, is Eunice Kennedy Shriver Day, a new global celebration which is dedicated in her honor to the act of inclusion, in particular, inclusion of those with intellectual and developmental disabilities.  All you have to do is think of ways, large and small, that you can connect with someone with ID or DD.  And then — just do it! Inclusion can start with just a new way of thinking, and if you let that lead to personal connection — well that’s all there is to it.

Here is what I did:

The golden welcome-back aura of September brings with it the opportunity of new beginnings and second chances.  But I find myself uncomfortably challenged by that. My oldest son is severely autistic, and our emotional calendar—to say the least – does not always match up with other people’s.  So I have to admit that when I first heard about the upcoming “Eunice Kennedy Shriver Day,” planned for September 25th, I kind of sighed. This was to be a new, international day devoted to acts of inclusion of those with intellectual disabilities. Sounds good but how, exactly, am I to do it? A simple trip to the ATM with Nat can be a cause for anxiety, because I know he is going to want to walk around and around that crowded little room, waving his hands and whispering to himself. Yet I bring him because I know he loves being among people, even though it looks like he’s not even noticing them. Is that an act of inclusion?  I suppose it is, because I bring him along even though I don’t have to.  Somehow, I don’t think that this is quite in the spirit of EKS Day.

But I wasn’t thinking about any of this the other day when I took Nat to the hospital for a routine EKG.  Around once a year we go in and he gets tests like EKGs and blood labs, because of his serious medications.  And every time, I sit with him, watching him closely and holding his hands.  That’s probably unnecessary at this point, now that he’s twenty; it’s just that there was this one time – maybe ten years ago –  when the phlebotomist stuck him and Nat twisted around, shouting, “I want to bite you,” aiming his teeth at the man’s wrist.

Shortly after we registered with cardiology, a woman came into the waiting room with her teenage son.  They checked in, then sat down to wait.  She chose a magazine, and soon the technician came out and called out the boy’s name.  His mom barely looked up from her magazine as he left for his EKG.  I felt a small twinge of envy for this normal mom and her normal, independent son, but by now I am so used to those little pinpricks of pain that it barely registered.

I got ready for our turn. Maybe that was when I got the idea – a fantasy really, of Nat going into the EKG by himself. He was calm today, after all.  I just get scared of what could happen, what used to happen, and so my tendency is to do everything with him, to avoid trouble.  But was that fear based in reality anymore?  Was it even fair to him?

So I did the quick mental calculations of risk that I have become so adept at:  EKGs are a  simple procedure; you take your shirt off, tape on the sensors, turn the machine on, peel off the sensors, and put your shirt back on. All of five minutes.

“So Nat,” I said.  He looked up, wide-eyed.  Nat gets anxious about conversation.  “Do you want me to go in with you for the EKG, or do you want Mommy to stay out here?”

“Mommy stay out here,” he said immediately.  Then he added a firm “Yes.” I had my answer.  He didn’t want me with him.

The teenage boy soon came out and his mom stood up and gathered her things, completely oblivious to the miracle of nonchalant normal she had just experienced.  The same technician called for Nat.  He leaped to his feet and slipped quickly past her, waving his arms and talking to himself as always.  The tech didn’t seem to notice; she didn’t realize he was anything but a guy going in for his EKG.

But I could feel that old, heavy responsibility pushing down on me, from twenty years of protecting Nat from the world and – I realized just then – of protecting the world from Nat.  So of course I felt it was my duty to inform her: “He’s autistic – but I’ll be right out here…”  I said, almost apologetically.  As if I had no right to send Nat in there alone; as if he had no right to try out independence on his own terms.

“It’ll just be five minutes,” the technician replied.  So I sat there waiting, glancing at magazines that I wasn’t relaxed enough to read.  And then, indeed, five minutes later, Nat burst back into the room, talking and waving; all was well.  The technician stood there for a moment, smiling at us from the open door.  I could have cried with happiness and pride.

I’ll never know what it was like in there for Nat and the EKG technician.  I guess I don’t really need to know, any more than the other mom has to know about her son during his five minutes. But what I now know is that inclusion doesn’t necessarily come with a lot of fanfare – sometimes a meaningful act of inclusion may only last for five minutes.  When Nat jumped out of his chair and into the examining room without me, shucking his isolated, protected existence for a few moments, that was a move towards inclusion:  his own.  And what made it work was that there was someone smiling and waiting for him when he got there.


Awesome. And so unselfish of you to put Nat ahead of your “need to know”. I think that will be a hard one for me.

— added by Jacquie on Friday, September 24, 2010 at 8:30 am

Thanks for sharing your story. It is one of my favorites and very close to my heart. Happy EKS Day to you and Nat.

— added by HJacobs on Friday, September 24, 2010 at 2:47 pm

Well, then I’d say you experienced another little daily miracle! Congratulations, and I say good for you and good for Nat. My severely autistic son is 13 and I am also having to get used to the fact that he is 13; he does not need me to baby him or to always overcompensate on those things that autism has made harder for him. I long ago let go of the stares and nasty comments when taking him in public; couldn’t care less. Still, I cannot let go of the need to protect him, to be his mommy and to make everything right, everything easier for him, everything more “normal.” I’m not sure I ever will.

The next time you are at an appointment with Nat, make sure you start reading a magazine and when Nat’s name is called, give the technician a bored, disinterested look–enjoy taking it for granted!

— added by Sharon Jones on Friday, September 24, 2010 at 3:11 pm

Hello just read your Inclusion blog.. Great stuff. I’m a Special Olympics volunteer and head coach of guys and girls basketball team.”Carolina Courage” I love this and appreciate the blog and wish you nothing but the best for Nat. God Bless you and your son..

Love Cola SC

— added by Tim on Friday, September 24, 2010 at 6:30 pm

Thank you for sharing this story. Such a special moment and so important for people to hear. You are a wonderful mom!

— added by Linda on Saturday, September 25, 2010 at 10:47 am

What a great blog on an inclusion experience. It really resonated with me as I had a similar experience taking my 17 year old son with Down Syndrome for a routine EKG. I did go back with him but anxiously waited for the way Kevin and the technician would interact with each other. I was impressed with his communication with Kevin and his sensitivity toward Kevin’s special needs. He also was educated and experienced enough to treat Kevin as he would another teenager, by asking him about school and laughing when Kevin told him he was ticklish. Thanks to Eunice Kennedy Shriver, so many doors are now open to our children and their differences are understood and embraced by those enlightened. Thanks for a great story, and as Eunice would say, “All Moms with children that have special needs are my heroines.”

— added by Andrea on Sunday, September 26, 2010 at 2:45 am

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