Susan's Blog

Sunday, October 28, 2012

My Nat is Really On The Ball

A friend from my old neighborhood died last week. Allan Duncan MacDougall — known simply as “MacDougall” — died at 69 years, from a massive heart attack and stroke. Ned, Nat and I went to a celebration of his life today. Nat was on his way back to his own house, and we took him with us, but I would have wanted him there anyway, because Nat knew MacDougall.

The party was next door to our very first house, which we’d bought in 1996. It was a 1900’s Colonial Revival almost-Victorian, with leaded glass and pocket doors and heart pine floors. It was my dream house. We could not really afford it, but we managed somehow. That could be because we did all the work ourselves (painting, landscaping, kitchen updates…). This was the house where Nat’s autism really settled into him, where Max started kindergarten, and where Benji was born. This was the house I almost ran away from when autism was just too much to bear. We sold it in 2000 and moved to a bigger house to suit our bigger family and where we still are today.

I had not realized back in 1996 that not only was the little house a gem, but so was the neighborhood. Next door was a couple who were so old they had worked for the JFK campaign. Across the street were Susan and Joe, who became good friends of ours, who even looked after our boys when one or the other had to go to the emergency room.  Susan comforted me the day I almost ran away from home, and kept me there with her nurturing kindness.

And on the corner in the crazy orange Victorian were Joellen and MacDougall.  Teachers at Newton North High School for decades together, Joellen and MacDougall were a Milton Road institution. Joellen is probably close to my mom’s age, but she was more just a kindred spirit of mine. She still is, even though we don’t see each other more than once a year. Joellen is lean and intense, active, politically and physically, and she sees right into your heart. Joellen always cared about how things were for me, regarding Nat and everything else. She really, truly wanted to know. She’d look into my eyes like a hawk seeing prey and she’d dive into my problems and wrestled with them almost right along with me. MacDougall wasn’t that way, but he was real a presence in the background, always there. He was a Santa Claus lookalike, a history teacher, a 50’s rocker, a Bob Dylan expert, and a truly independent thinker. In another era, he’d probably have been Woody Guthrie, traveling the trains and singing folk songs and stirring up trouble.

I didn’t know MacDougall as well as Joellen, but it didn’t matter. I felt he was both a stranger and a friend, who would talk politics and simply assume you were right there with him. I was. I remember when MacDougall bought a dog — Rufus Diamond — part Pit Bull, part German Shepherd, and how Joellen and he would toss a ball to him daily in their tiny side yard.

I don’t know if it was MacDougall or Joellen who first thought of it, but one of them asked Nat to come over and throw the ball to Rufus Diamond. And 8 year old Nat did it, giggling at the looniness of the dog jumping for a dirty shredded tennis ball. Nat even took it from Rufus — I think — even though it would be completely gooey and slimy with dog saliva.

Later in life Nat became afraid of dogs but his time with Rufus Diamond was always fun for him. It was possibly even more fun for me, Joellen, and MacDougall because we loved seeing Nat feeling happy with another living being, rather than by himself. It just seemed so little boy normal to me, something which, let’s face it, we all want to see in our kids from time to time. Nat’s catch made the world seem a little less scary to me, the autism more manageable.

I became very close to Joellen just before we moved away. It was hard to leave her and Susan and Joe, but I was set on Dream House Number 2. In some ways I think I broke Joellen’s heart when I left, and I have always felt sad about that. But she has a very big heart and knows how to keep it full. I owe a lot of my peace to her, so I knew that I really had to be there for her today, to celebrate the late great MacDougall.

I told Nat we were going and of course he wanted to go because he loves a party. I told him that Joellen was sad now because MacDougall died, and that she wanted to see us to make her happy. “‘kay,” Nat said, as he always does. When we got to the crowded house Joellen saw me right away and came right over, crunching me in a bony hug. She looked at me with wet shiny eyes and I was so glad to be there. Nat was off and walking around, doing a circuit of the downstairs, but mainly he was in the kitchen where plates of brownies, apple crisp, sandwiches and cookies were spread on a pale granite counter. I had a great time, which sounds strange because it was about a man who is dead, but when you think about it, most gatherings people have around death are completely joyous.

It was getting late so I started making the signal to Ned and Nat. I reached out and hugged Joellen, and reminded her of Rufus Diamond and Nat, and told her that Nat had a real connection to them because of that dog. She had not remembered that, and she lit up when I told her. She turned to Nat to say goodbye, and to my surprise, my darling son reached over and pulled her into a hug. Joellen and I almost started crying right then and there. I thought of how Ned and I have put our hearts into raising Nat to be as independent as he can be, capable, and bright. We’ve also helped him become a loving person. But I kind of think he also got some of that from living on Milton Road with Susan, Joe, MacDougall, and Joellen.

Saturday, October 27, 2012

Let’s Dance

Every now and then, I realize that our society still has a long way to go in terms of dealing with the difference that is autism. I was at a party very recently, and we’d brought Nat, fresh from his Halloween dance with his basketball team and social group friends. He was dressed as James Bond/Tom Cruise and he looked fantastic. Ned and I went out to dinner with friends and then we picked Nat up from his party and took him to ours — a dance party with friends and neighbors.

Nat was in fine fettle. He stationed himself near the snack table, in the back room where Ned and I were mingling with old and new friends. Nat was flapping a bit, talking to himself in his own language, and smiling a lot. He loves parties.

I felt so proud of him, in his black tux and white bowtie and slicked-back hair. He was gorgeous. He was happy. And we didn’t even think for a moment that we had to look out for him in terms of “behaviors.” That’s how far he’s come. Not only does he “behave” himself at parties; he actually loves them.

Yet, still, a friend and neighbor came up to me and asked if Nat was “alright.” She is a lovely woman whom I’ve known for years, and so I was alert the moment she asked. I looked over at Nat who was doing his flappy happy thing. I said, “Yeah! He loves parties. Why?”

“Oh, well, he seemed kind of agitated before. Really agitated.”

I gestured at him with my head, saying, “Oh, like that? Shaking his hands, smiling?”

“No. He wasn’t smiling. I was worried. But if you tell me he’s fine, then I won’t be.”

I patted her arm and said, “He’s fine. He hasn’t been agitated around people in years.” But as I said it, my stomach turned a little. Not because I was remembering those days, but because I was explaining and reassuring someone about Nat. When here he was, in his element, at a dance party in his own home neighborhood, looking so happy and beautiful. And yet there is still this level of malaise others have around him, and even the most well-intentioned among us still have the power, unknowingly, to cause pain.  We left shortly after, but not until I had a really good, bouncing dance with Nat.

Tuesday, October 23, 2012

Vote Democrat: It’s That Simple

Anyone receiving services from SSA (Social Security Administration), Medicaid, Medicare, and IDEA ought to care about this and vote Democrat, for President AND Congress!! Romney flip flops, you can’t trust him, and Ryan has been on the record to cut or not raise taxes for these programs. Read this PBS summary here.

Monday, October 8, 2012

Community College: the New Frontier for ASD

This week  (10/10-10/13) in Boston, the Association of Community College Trustees is having its 43rd annual leadership congress. Why should you care? Because CCCAID (Community College Consortium for Autism and Intellectual Disabilties) will be presenting their model on how community colleges can offer affordable and sustainable curricula to people with autism and intellectual disabilities. CCCAID currently has a dozen or so such programs throughout the country, each exhibiting astonishing success with its graduates.

I have been working with CCCAID for nearly a year now, as the Director of Autism Adult Services and Outreach. My role in the organization has been to represent parents of adults with autism and intellectual disabilities, to members of Congress and the Administration, as well as to colleagues in London and eventually other countries. CCCAID has made very promising inroads into extending the mission of the community college to include many more learners than ever before, with funding that mostly already exists, and can be reallocated in new ways.

Our mission at CCCAID is to help community colleges offer quality post-secondary education and job training for people with ASD and intellectual disabilities, real-world, hands-on experience and connections to the local community that last beyond graduation.  This task goes hand-in-hand with advocacy in Washington, to make sure that the funding streams remain healthy and available to community colleges. Two of CCCAID’s successful models will be presenting at the Friday morning session and I will be there to talk about my experience with autism adulthood and what kind of change in program offerings are needed.

Sunday, October 7, 2012

Nat speaks through typing

Nat really loves communicating, now. I guess after almost 23 years of struggling with talking, it must be a heavenly relief to do it some other way. The first time I ever heard of autistic people communicating through typing was Amanda Baggs’ video, In My Language. The second time was through Arthur Fleischmann, Tammy Starr and their wonderful daughter Carly.

Here is Nat’s latest email:
hi grandma
apple picking tomoroowe with john mom dana.
how you ?
new house john holly mike bami lunch have
job shaws cart out side good day


Friday, October 5, 2012

Nat Notes From 1997

Cleaning out drawers today. Old old Nat stuff, scribbled on the back of envelopes, scraps, whatever paper a flustered mother had at hand. Desperate pleas to help him, work with him while he was young. Extinguish self-talking, arm-biting, urinating on floor. Help him read, he is beyond kindergarten age. Make him respond, make him play.

I was very absorbed in these historical documents — true primary sources for Special Ed researchers about the state of autism education in an otherwise excellent school system, or for mothers who will find grim satisfaction in noting that some things have not changed at all. I don’t usually feel this cynical. I hope this motivates you.

There was nothing for him, so little known. These messy papers took me back to how much I had to do, every day, how exhausting our lives are. How exhausted Nat must have been. Nothing but disappointment for him, or the fanning of hopeful sparks, so much pressure on him to be who he now is before he was ready. Oh, my heart. My utter desperation for my firstborn child. Help him, help him, the world is leaving him behind.

Tuesday, October 2, 2012

A lot of questions

My terrible OCD returned for a little while the last few days… it’s like an itch in my brain that I cannot get to. Why is it here? I don’t really know. I don’t want a therapist to tell me, either. What I want is peace.

I realize that there is stress in my life that may be contributing. Duh, you think??? Max and Nat are so far away in one way or another and it is hard to talk to 14 year old Ben without pissing him off. They were all here for so little, and also for so long, I can’t believe it’s so quiet here now.

Quiet, for me, is sometimes a little like death. At times like this, I fall into a deep pocket — it has the softness of my home, but I can’t get out of it, either. So I force myself to go out, to ride, to drink coffee outside. To work. I go around blaming my writer’s block, the way I used to blame my parents! It’s none of that. It’s just that there are these feelings, of very deep anxiety.

I do wonder, on a deeper level, is this the way life is supposed to go? There are very few models of family + adult autism out there. Everyone would nod if I mention missing Max, or Ben’s new distance, but no one feels quite right weighing in on what’s going on with Nat, except to give us compliments. Which I often just don’t hear. Sometimes people’s opinions on how I take care of Nat are just like platitudes. Sometimes they’re mean, too brusque. It’s hard to get it right with me.

Sometimes, forgive me for this, but it feels like I’ve just kind of set him up in a little play house so he can act like he’s living a real life. Oh, how horrible for me to feel that way. And of course that’s not true about Nat’s life. He’s working, and doing a lot on his own. But because there’s so much help there for him, it makes me feel like sometimes I’m — lying? Finessing it a bit? How much does he know about his life? What does it look like to him?

Does he have the ability to look at his life and compare to another’s? Does he feel Max gets more from the world? In a way Max does get “more,” but in a way, Nat gets “more.” For one thing, Nat is known by so many more people, because of my writing! And he is loved and admired, I can tell. But what does he know of that? Max, on the other hand, must really know his effect on others.

I don’t know where Ben fits in this; he came along so long after his older brothers, who were practically twins. Max and Nat just feel sometimes like two sides of the same coin.

And when Max or Ben acknowledge Nat in some kind way — that’s the purest joy I know. It is so rare, too rare. “Hey Nat, ‘sup?” says Max. Or Ben laughs at something Nat said that’s funny. Like when I showed Nat a picture of this spider, and asked him what it was, he said, “Owl.” Ben laughed pretty hard. My heart just blew right up into my throat. Happy anaphylaxis. It matters so much to me that my three eggs love each other. That makes me feel more real. Their birth, after all, is probably the most meaningful part of my life.

What else am I supposed to be doing with my life? Is this terrible psychic discomfort I have because Nat is settled and because I just am not?