Susan's Blog

Friday, October 23, 2015

Inclusion, Shminclusion

All my maternal life (almost 26 years as a mom!) I have been aware of the concept of inclusion. My babies have been the catalyst for my fervor on the subject. Nothing like children to make you see life as it truly is, red in tooth and claw. When Tennyson wrote this, did he have kids? Because in many ways that is me, indeed, as a mom: a hawk, well-bloodied from the fight. (Proud, prominent beak, muscular, and feathers easily ruffled.)

Inclusion is not just an issue for Nat, whose autism has put that topic front and center for me. I have been roused to the fight for inclusion of my other two boys as well, who are neurotypical — though not at all typical. With Max, I despaired of his reluctance to join in with sports, particularly in the tender middle school years when everybody had to be running somewhere with a ball in the air. Not my Max. He was the tall guy walking down the center of the soccer field, while his teammates ran and jumped and butted their heads together. I have to admit that I hated the closed club of boys in team sports because of Max and Ben, not Nat. In middle school Max labelled himself a Floater, neither belonging to the sports lunch table, the drama boys table, or the geek boys table. He would smile his dreamy smile and float along, head and shoulders above it all. He was happiest with a Lego movie camera in his hand.

Oh how I worried. Should I force him to try harder to be a bit like the rest of them? I would wonder. Should I interfere and set up playdates for him? But no, he would just smile and he wouldn’t really have to even say much, his refusal was as hard as steel. By the time he was in 8th grade, he had figured it out, he was simply Max, and just about everyone loved him. He ultimately went to film school. He is now the coolest person in Brooklyn.

So then there was Ben. Ben categorically refused to play in any reindeer games. He didn’t smile about it, either. He always had full critiques on why that life was not for him. Well — not as a 3 year old when he would just sit in my lap like a hard brown walnut, and watch those kids in Boys’ Dance class or soccer. It was not gonna happen. And it did not.

Again, I worried. Was he sad? Angry? What was it? Why was he alone a lot? The answer was staring me in the face, all around me — Ben’s beautiful, brilliant, heartbreaking art. The energy to create like that was being channeled right through him, onto paper, and later, digital tablet. Now, at the high school, he’s not only a artsy kid, he is art himself. He creates himself, works on himself, daily. He wears layers of forest-colored clothes, Celtic-like rings, copper, silver. Plaid high tops. Listens to music that sounds like water droplets on mushrooms.

Nat was not included much with his non-autistic peers, ever. No art classes until last year (at 25). Solitary, not group music lessons. Special Olympics rather than school sports. Special school rather than neighborhood school.

But so what? As his brothers have shown me, being included might be overrated. You hang with whomever walks along with you. If your peeps are all autistic and special needs, why doesn’t that count? Nat’s always hung out with autistic guys. Or other special needs kids. Does he care? Isn’t he smiling at their birthday parties?

Why does it have to be “typical” peers — for any of them? Haven’t they all shown me, each one, over and over again, that it’s okay to be different? It’s okay to be alone. It’s okay to be an odd duck, a black sheep, lone wolf.

If so, however, it’s probably best to have a mother who’s a hawk. But whatever animal spirit inhabits you, I’m sure it works somehow with your little critters.


Tuesday, October 13, 2015

That thing with feathers

Recently a friend added me to a Facebook group and at first I sighed and thought, “Not another one.” This morning, though, I needed something to read and I was too lazy to look at the odd little book I’m reading. I sunk my lips into the foamy first coffee of the day and started to read. And there it was, mothers posting about sending their autistic child to a residential placement for the first time. I saw questions about teens not yet toilet-trained — one of those worries that stings (and probably shocks some of you), but that you can still articulate. Other parents talked about their lack of income, having given up jobs to take care of their child at home — for as long as they possibly could keep them. This particular concern was smeared with stinking shitty guilt because she felt a little selfish to be worrying about that, too.

But this wasn’t even the bottom yet. How much was left unsaid — that’s the part that cuts. As deep as the grave. It is still with me, the chill of having to let go; to allow your child fade into the fog. He becomes distant; he has to. And so many will say to you, “That’s the way it’s supposed to be.”

Yes, but no. Of course, children grow and leave for new experiences, and they learn how to fend for themselves. But do ours? Do our severely autistic children — including our verbal but severely autistic children — ever learn to really fly straight and safe?¬† Perhaps they hop on the ground, or are lifted sometimes by a particularly good, skilled teacher or caregiver. Then they fly, alight on a branch, and you think, “Ah. At last. Thank God.”

Yes, but no. For the Mother Bird hovers nearby, maintaining her nest. Eyeing the sky, listening to the air. Never going too far away. For she’s learned that they fall off the branch, or like my Nat, they may stay there and tweet so softly, and look at all the other birds getting their own worms, chasing, mating. And still he stays.

You want to puke it hurts so bad sometimes, knowing you could not do this last thing for him. This perfect, sweet being that grew from a tiny lima bean into a fat healthy baby. He could have had the world. If only you knew how to get it for him. Some will say, “No one gets the world.” Or “You did your best.”

Yes, but no. Some do get the world. You did do your best. But you could not do it alone, and the others who try to help don’t even do it as well as you. You can’t blame yourself, you can’t blame them, you can’t blame autism, you can’t shake your fist at the gods. You just have to live with it and keep your bird’s eye sharply focused for as long as you can, on his potential, and you keep hoping, that thing with feathers.



Tuesday, October 6, 2015

My Top 10 Nat Worries

10. Does he feel his life is terribly limited by his disabilities, and if so, has he made peace with that?

9. Does he feel patronized, talked down to, by me, and everyone else?

8. Does he get enough fruit/veg?

7. Does he sit around too much/is he bored a lot but unable to get out of it?

6. Has the medication actually helped how he feels or does it only look that way to me?

5. Does he like his job?

4. Does he miss his brothers, but not understand why they are growing up and have left/are leaving the house?

3. Does he wish he could talk to people, does he wish people (especially his brothers) would really try to talk to him?

2. Does he like living somewhere else? Does he wish for home?

1. Does he have bad dreams and doesn’t know how to feel okay from them?

BIGGEST FEAR OF ALL HAS NO NUMBER: Has he ever been abused/hurt/intimidated/bullied?

Answer: not only can I not die ever, I also should not be so ill-equipped to parent him.

Another thought: it is amazing, wonderful, and right that the institutions are closed/closing. BUT it is horrible that we still do not have really good solutions for inclusion.

Also, sorry to be negative.

Also, too bad, I’m human and it’s my blog, I’ll cry if I want to.


Monday, October 5, 2015

What Matters Most

I went to the Arc of the US annual conference over the weekend, without any real agenda except to attend some of the excellent workshops, to network, and to have lunch with the keynote, Tim Shriver. I’ve been friends with Tim for about 10 years, and a fan of Special Olympics for about 15 years. And now into my life comes his book Fully Alive, which was published last fall. Well, I’m a slow reader. In any case, Fully Alive¬†fits beautifully with the book I’ve just reviewed, Steve Silberman’s Neurotribes because of the light they both shine on the historically invisible people in mental institutions.

Fully Alive is Tim’s memoir, and it explains his personal journey towards understanding “what matters most,” a phrase he threads throughout the narrative. Key to his discourse is the parallel he draws between the story of his Aunt Rosemary’s life and how the Kennedys and Tim worked to improve the lives of people with intellectual and developmental disabilities (ID/DD). And Neurotribes is Steve Silberman’s history of autism — opening the attics and closets hiding autistics and seeing them fully human for perhaps the first time. Both Tim and Steve take us back in time and recreate a world that could not bear the sight of disabled people, that saw them as broken, useless, not worthy of effort or even life.

Rosemary Kennedy’s life hit a tragic note familiar to everyone — the failed lobotomy that took away most of her intellectual ability. But before that, she had only a mild developmental disability, and a good, full life — because she was always fully a part of the family. From the famous sailing in Hyannis to being presented to the Queen of England, Rose, her mother, always insisted that everyone include “Rosie.” In the book and at the keynote Tim recalled an evening where he had dinner with his uncle Ted and his mom (Eunice). That night he took kind of a risk and asked them if — and how — Rosemary had shaped their lives. He did not mean this in terms of the movements they championed; rather, he wanted to know how they personally felt Rosemary in their heart and soul. Tim and his family were not accustomed to talking this way, this soul-searching emotional digging. But after a long pause, Ted responded with a story that went something like this:

They were at a party in Palm Beach, when they were all teens. All the kids were together hanging out, having fun, but when he looked away towards the pool he saw Rosemary, alone, with her feet dangling in the water.

Jack noticed, too. He broke away from the crowd and just sank down next to Rosemary, at the edge of the pool, feet in the water. And they just stayed there, together, sharing their private moment.

Ted stopped, and Tim realized that was all he was going to get on the subject. But actually, he’d gotten quite a lot: that Rosemary was not to be forgotten, or left out, and more than that, she offered a whole different thing than anyone else in the family. In the book, Tim talks about Rosemary as the one person in the Kennedy family who did not feel she had to justify her existence. In a culture where everyone was exhorted to always give their best to everything — and be the best at whatever they try, and never rest on their laurel, Rosemary, by virtue of her disability, could simply be who she was.

After the lobotomy she was sent to live with a nurse in a very comfortable, lovely home in Wisconsin. But no one spoke of her, and she never came home. There was no more inclusion after that. From then on, Rosie was the family’s dark secret, until much later in life, when Eunice would bring her to their home. And so Tim got to know Rosemary as an older, very disabled woman, who mattered a great deal to Eunice. It was Rosemary who fueled Eunice’s fire to improve the lives of people with developmental disabilities. Probably the fact that Eunice had felt so close to Rosemary as they were growing up, and then so bereft when she was gone — in more ways than one — planted the idea that given the right tools and treatment, people with ID/DD could blossom and grow. In true athletic Kennedy fashion, Eunice chose sports and play as the medium, and held the very first Camp Shriver in the Shrivers’ back yard, when Tim was 3. She bused in children from nearby institutions and provided them with pony rides, balls and bats.

At the keynote, Tim said that this may have been the first time some of these children ever played outside. The first time anyone cared about what they could do. The first time they were actually looked at and allowed to be regular children.

The mind-blowing joy those children must have felt! But then, don’t I know a little bit about that? In the way that Special Olympics still provides a safe, supportive haven for all of us. Certainly for the athletes, who get to be brave and put themselves out there. They get to be seen and cheered on, when (still) so little of that comes to them in this complicated, high-power culture. Like Rosie among her siblings, there they can be who they are, and the best they are.

But also, what their joy gives us, the parents, the siblings, is the feeling that at least for right then, all is right in the world. In those moments, they are fully alive, and we are fully alive, because we can see that a life lit by the outdoor sunshine is what matters most.