Susan Senator

It’s fascinating and frustrating to me that people on both ends of the spectrum — from “High Functioning”/Aspergers to “Low Functioning”/their caregivers — sometimes cannot get along. Both tend to be dissatisfied with the kind or degree of attention they get. I want the infighting to stop.

From what I can tell, it appears that the HF autistics, those who can fairly readily communicate, whether by keyboard or verbally, feel that they ought to be given a seat at the table — or in fact, the head of the table — of mega advocacy organizations like Autism Speaks. This group feels that organizations like AS focus mostly on the downside of autism, particularly visible in the “lower-functioning” members of the spectrum (you can include Nat among this latter group), because it is easy to elicit attention and funding with the problems of the LF autistics. The HF-Asperger’s believe that this presents a skewed and negative view of autism, and causes people merely to aim at curing and stamping out autism, rather than learning about what it is like to actually be autistic, the uniqueness of this neurological makeup, and most of all the necessity for society to accommodate and include. The HF-Aspergers group often want to emphasize that autism is a part of them, it is an aspect of who they are, and to hate autism is to hate part of themselves, which is devastating, debilitating, and a dead end.

Many parents and caregivers of LF autistics, (like me) by the way, also feel that AS emphasizes the negative of autism, as they did in this latest video, and make our wonderful kids seem like horrors, and turn our lives into a pity party rather than looking within at the complex, layered, family lives we lead. Nor does AS try, in videos like I Am Autism or Autism Everyday, to interview autistics themselves to get an idea of what their (multiple, infinite, human) perspectives are.

Often parents and caregivers of LF autistics, however, also believe that they require the attention of groups like AS because that is how they are going to get help in the end — through this kind of private-sector fundraising. (I am far more a believer in public programs, which should be better funded, so that they can do what they are meant to do). This group of LF-autistics’ caregivers believe that the HF-Asperger’s group do not really understand their concerns, their lives, which are largely given to taking care of, educating, managing, financing therapies of, their autistic loved ones. The LF-concerned group sometimes believe that autism has devastated their lives and their children’s, and mostly because there are very few paths that lead to helping them. The behaviors that occur can be terrifying, violent, and destructive. They can also be exhausting, mind-numbing, and depressing, as in the case of children who are not potty trained, who can only eat one kind of food, who run away. People need to understand this. Difficult behavior is not the only aspect of autism, or co-morbid aspect of autism to be more accurate, but it is a huge problem, for autistics and their families and if Autism Speaks can help with this, then that is a good thing.

But — what is the nature of the help they give? Is raising awareness enough? Yes, if it actually leads to strong lobbying for insurance coverage of autism therapies. Yes, if it leads to more money to support families, job supports, group home care. Yes, if it leads to giving the more socially able autistics an opportunity to guide policies affecting autistics.

If AS is only making the public terrified of autism and flu vaccines, then they will only be adding to our problems as a society. We will see a resurgence of terrible diseases, far worse than H1N1.

The high-functioning autistics do deserve to lead the conversations at Autism Speaks’ table, right alongside the LF-autistics’ caregivers. Autism Speaks must listen to the full spectrum and not just the terror of some caregivers. (Or else they should rename themselves Autism Speaks For Some.) But the HF-Aspergers group must be responsible representatives and be sure they are truly representing the interests and problems of those on the spectrum who are less able — or if they work hand-in-hand with the caregivers who understand firsthand the issues for their loved ones.

If we could all work together, a round table where there are no closed minds, and stop all the exclusion — imagine what we could do.

I must remind you that after all this is my blog and if you came here today for autism, you will be disappointed. Or maybe, take it as a reminder that regardless of your struggles, life is still here, to be grabbed up and embraced.

Be Loved

Everyone thinks
But no one knows
They only see that love is fresh
When skin still glows.

They tell their children
The t.v.s say
that all of that mellows
even goes away

Yet we keep the secret
Wrapped in blankets tight
It smoulders, not smothers
In darkest night

I think I know now
Why some things come when old
Why we’re warmed by their power
and rarely feel cold

For maybe the real love
and the explosive desire
bursts and pops only after years and years of
the lick and hot kiss of time’s fire

I used to be so sad on Nat’s birthday. In fact, the way I began the first (2005) edition of Making Peace With Autism was, “The saddest day of the year for me is November 15, Nat’s birthday.” It was true then. Back then, and all the years leading up to then, I would feel as if I’d been hit by a train. I had to act happy, but I was not.

I was still living in the world of young motherhood, where you are surrounded by the noise and need of children, the early days of everything, the busy, the breathless, the feeling of eternal family life. Living within the unconscious, sweet narcissism of young parents, who believe they own these beings they’ve given birth to.

By the time the 2006 edition came out, I had asked my publisher to change the first line but they couldn’t. Not sure why. But I knew that it was no longer true, and it wasn’t fair to Nat to have those lines in there. So I am sorry they are in there.

I was much more careful writing this second book (Autism Mom’s Survival Guide (for Dads, too!). I wrote it thinking that I didn’t know what Nat would think of it, and therefore I wanted to be careful. I was honest — I’m always that — but respectful.

No, the dark magic of Nat’s birthday no longer has any power here. I don’t need my young man to be eager for presents, or care about cards. I don’t need him even to like the cake (he didn’t this time, not sure why, probably because he is still a little sick). I did need him to hug me tight when he left to go back to The House, but he did not want to. That made me cry, but only a little bit.

In true maudlin style, I determined to have a good cry, so I broke out the Allman’s Sweet Melissa, which I think of as Nat’s song, and I played it, holding a wad of paper towel in my hand for the tears. But I only cried a little, before I felt silly. Nat is not a Melissa. Back then when I was pregnant, I thought I was going to have a girl, and that I would call her Melissa. That was just the beginning of life not giving me what I had planned for.

When Nat was around 5, I remember telling Grandma that his birthday always made me sad. “Why?” she asked.
“Oh, because — you know — ” I stammered. “It makes me think of how he’s — you know…”
“Why would you be sad on his birthday?” Grandma just did not get it; she would not hear of it.
This pissed me off back then.

Not now. I get it now. She knew so much that I didn’t know.

Nat is not Sweet Melissa, and Nat is not a sweet baby and Nat does not care about his birthday and he requested to go back to The House and he does not really want to hug me, but — okay. I’ll live. That’s who he is. It’s not who I am, it is who he is. He has a right to be that, and not to be changed. He’s 20. He’s an adult. I’ve got to stand back, and let him live his life the way he wants to. Happy Birthday, Nat.

I got Nat’s virus, so I’m miserable today. Ben seems to have it too. Ned is getting there. Max is so far unscathed and off at Hannah’s, where presumably they are illness-free. I’m in sweats and eating straight honey to soothe my throat. My coughing is explosive, just like Natty’s was.

So the thing is, tomorrow is Nat’s 20th birthday, and I usually make a very big deal of it. I wrack my brains for just the right thing to give him, some way to hold him here, to get his attention, to make him happy. But he’s probably happier not giving his attention, not being held here! So on his birthday, I have to take it easy.

Since I’m sick, that’s no problem. I’m just trying to hold my head on while I cough, so Ned is making the cake — chocolate and chocolate. Nat helped, and got to lick the bowl. To me it is so paltry a birthday celebration, but what do I know? I’m dumb with DayQuil.

Want to know how pathetic I am? I have been enjoying having Nat home sick. He doesn’t have the flu, thank God, but I guess some other much lesser thing that gave him a tiny fever yesterday and a huge cough. The nurse called me, and I got down there as soon as I could (I was downtown, finishing work). I had just emailed the school telling them that I wanted to know the moment he was sick so I could decide what to do. Of course he could have stayed at The House, and in fact he was there when I came in at 11 ish. They do round-the-clock care, and they mean it. A lovely young teacher was staying with him.

But in comes La Mother who scoops him up and takes him home. I’m just a girl who cain’t let go. First thing I did was feel his face: hot, but not scary hot. I sat him down and I made him hot cocoa, from scratch. I was totally in my element. He slurped it carefully while I made him a bagel, but I noticed he just picked at the bagel. His self talk (formerly known as “silly talk”) was a tiny croak.

“Nat, you don’t have to eat the bagel,” I said, knowing that he would need to be told that, and would not necessarily stop eating it on his own. (That, right there, is the disability: the apparent passiveness, the lack of self-awareness, despite the name for it: aut-ism, being unto oneself.)

“You don’t have to eat it, yes.” He said, and then I really knew he was sick. He went upstairs and lay down for a bit. When he came down again I had an idea: make him some tea that my yoga instructor friend brought me. She knows tea, for God’s sake. But Nat has never had tea. So I basically just dunked the chamomile-infused limp thing into the hot cup and then squirted in like three teaspoons of honey. Hot honey tea-like water! He sipped it carefully, self-talking with every gulp. I heard, at the end of one of the whispered self-talk phrases, “…coffee,” and I wanted to laugh. It was so good being able to take care of him, and to have him let me. I felt so close to him, closer than I have in a long time. It seems that my relationship to him is very much based on our physical proximity. I need the feedback to relate to someone; he does not. He’s lucky.

Anyway, Yay, he likes tea! I will now give him all the tea in China.

You’re with me now
And as long as you stay
Loving you’s the right thing to do.
–Carly Simon

First, Nat left and I was so unsure if it was the right thing to do. Everyone told me it was the right thing to do. Eventually I accepted that it was the right thing to do. Most of the time.

Now, Max is going to leave and I know it is the right thing to do. Everyone tells me it is the right thing to do.

But I am f’ing freaking out. Today he and I had had a discussion where he told me that NYU was his top choice. His top choice? When did this happen? How could we help make it happen? I got into a frenzy of organization and strategy. Interviews? Visit again? Early Decision? WTF? College? Leaving?

So while I was loading my car with groceries, I nearly burst into tears. They’re with me right now. Max is leaving soon. And I find myself thinking, “I didn’t have enough of him. I didn’t, I didn’t, I don’t know — something.”

Nat flashes into my head. Something familiar about that. Not enough. I had felt the same thing about him. I didn’t have enough of him. I never got to — what? What is it I wanted to do, what more did I need? Connection? I got it, in bits. Growth? Maturity into a lovely young man?
Yes!
And Max? Connection? I had it in spades when he was little. I get it now, but it is — dignified, rationed. And oh, how he has grown, and matured into such a wonder. A young man with such a good heart, such good judgment.

So what more do I want? It is not something I can articulate. The tears talk.

Is this what it is with our children? We live in a blur of activity, of planning, or worrying. We play with them, smile at them, laugh, cry, wring our hands. But we don’t have enough. All we have is our love, and that is everything, but it is not what we think.

A dear friend of mine had an interesting “assignment” from her daughter’s high school English teacher. It was to make her own Polonius speech, and she gave me permission to share it with you, because I think it is a blissful piece, and a healthy way to view life no matter who you are.

Dearest,

As you continue to grow and find your own footing as an adult I would like to try and put into words the things I’ve found to be most important in life. As you know, I am very unorthodox about pretty much everything, which I know has often been a challenge for you. But all of us are always doing the best we can. We can’t do MORE than the best we can. We can just do the best we can. Which I guess is one of the important things I’ve learned. EVERYONE is ALWAYS doing the best they can, and if we can really see this and accept it we save ourselves a lot of heartache, especially when we look at our own behavior. When we look at things in retrospect or are projecting ourselves into the future, it’s very easy to think we could have done something better or we should be able to do things a certain way in the future, but all that is just thinking. The reality is we did and will always do only the best we can and no more, and that is ENOUGH.

I’m so happy that you are who you are. You surprise me a lot with your wisdom and insight and knowledge, (which is different from wisdom) and I don’t worry about you anymore. I used to worry when I saw you trying to be some one that you’re not, because I know how painful that is and because I see how beautiful you are as you are. You are kind, tolerant, smart, fair, curious, talented, introspective, funny, discerning, creative, beautiful and honest. Sometimes honesty stings, but in the end it is always “the best policy”.

I feel like I want to write more to you in another letter, but for the purposes of the assignment I write the following, much of which you already do without any problem:

Trust yourself.
Give other people the benefit of the doubt.
Be kind.
Be honest.
Take care of your body.
Be discerning about who you spend your time with.
Speak up for yourself.
Ask for and accept help when you need it.
Say “yes” when you mean “yes” and “no” when you mean “no”.
Keep your word.
Avoid becoming entangled in other people’s dramas.
Try not to take things personally.
Do what brings you joy.
Realize that everyone is doing the best they can, including you.
Avoid doing things that might compromise your judgment.
Listen to the voice within you that KNOWS what you should do
and follow that, even if others don’t understand or approve.
Trust that you are loved and lovable.
Look for the beauty in every person and situation.
Be open minded and open hearted and find a way to give back to the world.
Trust yourself. Trust yourself. Trust yourself.

Love, Mom

Yesterday when Nat came home from school, I made him stand in the entryway so I could hug him. His face had a lot of stubble, and his skin was rough and smelled like food. I said, “Donnes-moi une baisse!” He looked at me, and kept walking. Then I said it again, pointing at my cheek. He pointed at his cheek. I said it once more, pointing at my cheek, and he did come over and kiss me. I exuded my usual joy with him and he went on his way, always the same, remove the jacket, remove the shoes, throw down the backpack, take out the pill bag and put it on the counter, run upstairs and unpack, leaving the dufflebag in the middle of Mom’s bed.

He was smiling faintly as he ran around, and that made me feel good, like maybe it had something to do with me. The tiny seed of hope explodes open, a shoot poking its way through old crusty winter soil. Ah, well. I was glad to see him, in any case.

Later that evening, when I said goodnight to him, I did what I always do, check that his PJs are adequate, ask him if he needs another blanket. Then he offers his face to me and says, “Kiss you goodnight.” I kissed him. I said, “Okay, how about kissing me?” And he does. He always will — if you ask.

Last night, I slept with a lot of consciousness, so I was happy to wake up because it hadn’t been much good. Yet with that kind of sleep, you can easily remember your bits of your dreams. The dream piece that stays with me is this: I was in Nat’s room, the same bedtime routine of straightening his covers or something, before he got into bed. He entered the room, passing me in the doorway and stopped to give me a kiss, which he had anticipated. (This was only a tiny leap, because he is so attached to his routines and anticipating everything.)

But then — the sweet cruelty of dreams — as he walked by me into his room, he rubbed my back, with that faint Nat smile. He rubbed my back, a few seconds of giving, of knowing what I needed and giving it to me. A lifetime of missed neural connections, corrected literally overnight.

Except that it was a dream.

Here’s why I hate competitive sports. In the end, it is all about winning. Winning by definition means somebody loses. Oh, right, so that next time they’ll try harder to be the one who doesn’t lose.

Except when you’ve got a person who only just recently figured out how to play a game, and why it’s a good thing to throw a ball away, so that it lands in one particular place as opposed to another. It turns out you have to do something with that ball if you catch it. Push it out of your hands, and everyone around you cheers. Get it to go into the basket, and they cheer even more. Plus, if you do that, you get to stay where you can run with your friends, rather than sitting still on the bench.

No problem, thinks Nat, or some facsimile thereof. For once in his life outside of classroom schedules and routines, he has figured out the gigantic puzzle of what people do together. (We think we are dealing with a puzzle, but let me tell you, the puzzle Nat has to put together of how things work makes our autism puzzle look like a four-piecer.)

But things must move forward, taking shape in one way and then, when that shape no longer fits its surrounding circumstances, breaking up and reforming. And so the Boston College Bobcats will no longer exist; now the entire team is being moved closer to Nat’s House because everyone on that team is actually from the House and not from around here. The rest of the Boston College team, the Cougars, which are Nat’s social group friends, will stay at BC, because they are from right here, Nat’s hometown.

But it is more convenient for the Bobcats to be a team close the where they live, near the House. The first problem with this is that we would have to bring Nat back to the House one day early for his practice; he usually stays with us until Sunday after lunch. Now he’d have to go back Saturday late morning.

The second problem is the real problem. In terms of skill, Nat belongs more with the Bobcats. Yet, Nat could conceivably stay and be a Cougar at Boston College with his social group friends. But wait: those guys are “higher functioning.” Would he be bringing the team down? And while functioning levels don’t matter when you’re going out together on a Friday night to mini golf and pizza, when it comes to Sports — well, let’s just say that the guy who only just learned, after three years, what to do with the ball — he maybe should be on a team of guys of “similar functioning levels” to him.

Knowing Nat, he will just go and play wherever he is sent. One more thing he has no control over, and yet one more thing he will most likely transition to with grace and smiles. I think it is exactly that which makes me feel that pierce of pain, which goes in through my throat and spreads into my belly. That right there is the disability: this passiveness, this inability to master your own fate, and the mute acceptance of what is done to you.

Maybe it bothers me more than it bothers him. This is also where I don’t know where I begin and where Nat begins. His disability binds him to me way beyond teenage rebellion years. I am told to let him go, but the fact is, he must always be somewhat attached to me, a thin, invisible umbilical cord that stretches across city borders and basketball courts.

The disability is also manifested by all the doors that close, heavily or quietly, in your face or over time. That preschool has no one-on one; time to find a special classroom. That classroom is academic, not vocational, but he can’t do academics anymore. Time is running out. He needs to learn pragmatics. No more history or science. Well, who needs that anyway…

Or — that team is inconveniently located, and besides, the kids are at a different level. Slam, move to the next doorway. Pick up the ball and run with it, run to where they will cheer. It’s not whether you win or lose, it’s how — or where — you play the game.

I now have the first two events scheduled for my Autism Mom’s Survival Guide book tour: Sat., April 3, 2pm, Gibson’s Book Store, Concord NH; and Sat. April 17, 2pm., Borders in Chestnut Hill, Mass. If you have a special needs/autism group that wants to sponsor an event with a bookstore near you, let me know and I’ll put you in touch with my publicist. This is usually how I do these things; an autism conference brings me out to wherever and partners with the local bookstore. (For Making Peace With Autism, I’ve been to Minnesota, Wisconsin, Wyoming, Toronto, Ohio, Pennsylvania, NJ, NYC, CT…) You can see the kinds of events I’ve had right here in my site.

At the Gibson’s event in New Hampshire, I will also have a special guest; here is his press info: “Matthew McNown, the author of the young adult fantasy book, DANAR, which came out in August. Matt is a unique 21 year old boy with autism living in Durham, NH. What is extraordinary about him is that, as someone on the autism spectrum, he has not only worked to conquer his grasp on this realm but has created a whole new one with the characters in his book.”

Also, if you have contributed to the book, I would be especially interested in having you stand with me during the book talk and participate in the discussion.

I spend so much time thinking about autism; studying it like a college course. I give talks and travel all over the place expounding on autism. The last few days I was in Washington serving on a panel alongside scientists, reviewing autism research grants. The cerebellum was working overtime. Autismautismautismautismautismautismautismautismautimsautismupthewazoo.

I was asked over and over again, what, among other things, ist my plan for Nat when Ned and I are old and unable to care for him (or dead). I always say, “My plan is not to die.” That is not much of a plan. So I spend a lot of time talking to people and programs and agencies about what we’re supposed to do when he’s older.

It’s a lot to worry about. I have spent a lot of his life worrying and planning. Shoot.

This morning as I was running around collecting odds and ends for boys’ costumes, I realized I was having a lot of fun — with and because of my boys. I had to take B to TJ Maxx to get some brown socks to cut up (he was going as Link and needed stuff like brown gauntlets — let me tell you, I know a lot about gauntlets; they are a necessary part of the bellydance cossie:)

So we cut up socks, pinned on his hat, belted his tunic. Nat, on the other hand, was Aladdin — as Prince Ali. Max was a Jedi Wizard. All made out of stuff we had, some of it years old.

I suddenly thought how so much of my autism parenting is planning and worry. So much of my parenting in general is. Baby days. Preschool. Elementary school. Bullies. Tough homework. High school. Girlfriends. College. Independent living. It’s the job description.

But tonight it was just wrapping boys up in ugly old shmatahs and sneaking candy.

Look at my three goofballs. There, nothing to worry about. Except — gotta go through the candy, make sure they are careful crossing the street, …

The issue for autism parents should not be what they did and did not try. That should not be a divisive factor in our community. Why judge? Why not assume that each parent is doing the best they can, with the small margin of exceptions? How can someone judge from the outside what the inside of my family — or my kid — is like? In fact, how dare they?

Some of the comments in my last post just blow my mind. I can’t imagine equating advocacy in the State House with giving up on my kid. It just doesn’t make sense. I also can’t imagine making the broad statement that “most parents” don’t have the time to advocate like that, to give up time to sit in some representative’s antechamber. How the hell does anyone know what other parents do and don’t do with their time? I took my lunch hour to do that. Sometimes I make a trip into Boston specifically to meet with my state rep about Nat and others. If he’s in school, why does that mean that I’ve chosen the wrong way to spend my time?

I just think we all need to tend our own gardens a bit, and work more towards understanding how to solve problems, rather than think that we have all the green grass on our side of the fence.

Sometimes people ask me, “How do you do it?” meaning that I have so much energy, blah blah. I was thinking about this today, because after I taught my class, I went straight to the State House. There I joined fellow parents of developmentally disabled adults, who were also there, as well as advocates. They were sitting vigil, which they’ve been doing on and off for weeks: first, in the Governor’s office, and now, outside of the Senate President’s office, as well as the Speaker of the House. They were on the floor, or hanging around the closed doors. They said that what they were told is that people could go in to see the Senate President Therese Murray “two at a time,” and that the others just had to wait.

So there we all were, pissed off tired parents, with many mentally retarded adults. I use that word non-pejoratively, because it gets right to the heart of things, doesn’t it? You get a visual, which is what I intend. Nat is one of them, and I have no shame in saying that. The shame is on those who use the word “retard” as an insult, and emphasize the first syllable. The shame is on those who never stop to think about how if you just say, “those public programs are wasteful, therefore I don’t support them,” you are taking the easy way out. What else is there? What has the private sector done in any kind of consistent, predictable way? To rely on charity alone is to be at the whim of donations.

The shame is also on those who develop biased I.Q. tests, that ask you to stack cubes a certain way, or trip you up on categorizing. They don’t and can’t test compassion, or willingness to work, lack of guile, or eagerness to learn. They don’t test mastering activities of daily living, nor do they test how far a person has come. They don’t test those who have learned to control their eccentric behaviors, or their aggression.

And the shame is on our leaders. Our legislators, our Governor, who promised so many wonderful things and are not delivering. They are letting our most vulnerable simply go home, if they are even lucky enough to have one. Even Nat, with all of his skills, does so little at home, when compared to his group home.

And perhaps the shame is on all of us, for sending the message that we don’t want any new taxes, when there is no other way to pay for these services.

It’s as simple as this: if you cut services for disabled adults, they have no services. If I must say this, then I will say this. It is not the same as cutting funding for libraries, for roads, for zoos. Even for schools. There is nothing like there is when they are school-age, where they are entitled to go to school. There will always be schools to educate people, in one way or another. But there will not be group homes. There will be no day programs, no way to work. There will be nothing but parents like me, or not like me. Elderly. Fixed income. Working class. Jobless. Ill. Mentally ill.

If you cut the Department of Developmental Services, formerly the Department of Mental Retardation, or if you cut the Department of Mental Health, you cut the services. There will be no services for thousands of people like Nat.

I went into the Senate President’s office and I demanded that she come out, even for a minute, and meet all of these people I said it was an outrage that no one was talking to them. Some of them were even her constituents!!!

I heard that later on, she did come out. Not an aide. The Senate President came out. I am grateful to her for that. Now I hope she and the rest of them will come through.

How do I do it? How do I not do it? I do it because it makes me so angry. We should all be.

I’m on Twitter now, mostly writing short tweets about autism. I’m kind of doing not tips exactly but thoughts, ideas, points of view, aphorisms. It’s not as bloggy as my blog (of course, because there’s a 140 characterlimit, but I like that challenge) and it’s not as in-your-face as facebook. Follow me, you might like it. You can find me @susansenator, of course.

When Nat was a little guy, starting at around age two, he used to memorize books. He did not know how to read; he would just listen to the story and memorize it, with our inflections. This talent was the thing that threw his pediatrician off the autism scent. He would stand there in her office, reciting whole paragraphs of The Velveteen Rabbit, and when I would say, “I think something’s a little off in Nat,” thinking about how he could not answer a “yes” or “no” question, or ask for much of anything except to say, “want juice,” she would respond, “Oh, he’s a little genius,” with such love in her voice that I never could muster up any anger at her for missing the crucial fact that Nat was autistic. To this day, I forgive her, because I love people who love Nat, and because he was, indeed, a little genius. I still think there are hidden, deep reservoirs of knowledge running through Nat, but he keeps it to himself. But he knows. You can see it in his Disney eyes, wide-open and Elizabeth Taylor lavender blue.

Nat was six when he did his kindergarten year in a pre-K class in our town. That was the first and only time Nat was included in a “regular” classroom where he lived. (It took me years to get over the fact that there was no classroom for autistic kids, while there were whole programs, magnet schools, that provided specialized curriculae for LD and cognitively delayed/Down Syndrome kids. This fact ultimately led to my running for School Committee, five years later, where I was resentfully given a seat at the table of folks who created policies for the entire school system. I say “resentfully” because I was considered a “one-issue candidate,” a grave sin in politics. Anyway, I soon proved them wrong, but I certainly did keep special education front and center during my reign — er, terms. By the time I left there were several different autism programs — I’m not saying it was something I did, but I’m certainly glad that the administration saw the light. They saw the autism wave coming, but like the crew in the Poseidon Adventure, and school systems all over the country, it was only when it was upon them.)

There were three aides in Nat’s kindergarten classroom, not assigned to anyone, but by Christmas time I was yelling and screaming that one of those aides had better be for Nat and only Nat, or else he was going to lose all the progress he had made in the last two years in the private behavioral school he’d gone to. I called an IEP meeting at that point and wrote up a curriculum for Nat based on the town’s kindergarten curriculum. I showed the team, point-by-point, what they needed to be teaching Nat and I suggested ways that the aide could facilitate that.

The teacher in that classroom was very good, especially at including Nat. Because of his prowess with books, particularly of the Maurice Sendak variety, she designated him the “Expert in Where the Wild Things Are.” Nat was obsessed with the book, like many children are, and reading it over and over was a frequent way we spent time together, his high voice giddily shouting the words, filling in my blanks.

This afternoon we all went to see Where the Wild Things Are. I didn’t know what to expect; how could they make a full-length feature out of a short children’s book? But they did. There was so much material in the book, explicit or imagined, that the movie really worked. I could see that the Wild Things were archetypes of some sort; maybe Carol was supposed to be Max’s alter-ego, a way that Max could work out all of his sadness, anger, and disappointment with how his life back home was going. The other creatures were friends, imperfect and yet each filling a place in his world. Max back home was pretty lonely.

Nat was riveted during the entire movie. I think that it may have been the stunning, true-to-the book characters and scenery. It also could have been the lovely, haunting score sung by Karen Orzolek; Nat loves music, especially in movies. But my heart tells me that it was the way, throughout the film, the script was true to the book. Especially that in the end, Max sailed back over a year, in and out of weeks, and through a day, and found his supper waiting for him.

And it was still hot.

In English 101 we are starting our last unit, which is all about perfecting the research essay.
I tried to get my class interested in Steamboat Willie yesterday, which Ben and I think is hilarious.

I showed them this cartoon because we had just read Stephen Jay Gould’s A Biological Homage to Mickey Mouse, a research essay with warm narrative components. The essay purports that Mickey Mouse physically “grew down” as he grew up; that at 50 he was more childlike in appearance, and yet, more Rated G in personality. He’s become gradually more innocent, insipid, and boring. If you watch Steamboat Willie, the original Mickey Mouse, you see something more akin to Itchy and Scratchy, minus the butchery.

I could not get my students interested in old Mickey. Most had not read the Gould, either. I tried to get them thinking about the point of the Gould, that there is an evolutionary purpose to our tenderness towards big-eyed, round-headed baby creatures. Nothing. I then bombed again by trying to get them to analyze journalistic research in an actual paper newspaper. Most had no idea what an oped was.

I don’t want to sound like those cynical types who say, “Kids these days are so poorly educated, they don’t know anything, they don’t want to think…” That is not the case. These kids know a lot, but their exposure to knowledge is limited, ironically, by the sheer enormity of the Internet. They also do like to think, but isn’t it the adult’s job to teach them the importance of that skill? I am responsible, and I want to be better at it. I want their minds turned on the way mine was in college, the way mine is.

They remind me of Nat in some way. They are the same age. They stare blankly at many things I say and seem to just want to sleep or be in their own worlds. It has been so comforting teaching freshman in spite of my occasional failures to ignite their passion for writing, because they seem sweet like Nat, and innocent and naive, even though they appear more savvy than he is.

One major difference is that I can always interest Nat in old Disney. Nat likes the oldest Disney movies, rather than the new, whereas my students spoke of how they were influenced by Beauty and the Beast, the Little Mermaid, and the Lion King. Nothing wrong with that, except when you watch Snow White or Pinnochio, you feel like you are watching a real movie, a work of art. They put so much time and thought into those movies. I’m glad that I can appreciate them with Nat, if not my college students.

I had to go to the Apple Store to pick up Twilight Princess (this laptop) whose clicking pad was clicking way too much. I couldn’t get anyone to go with me to get it, though. Not Ned. Not even Max. I didn’t know why at the time but this set off a huge crying jag.

When Max was little, I always took him shopping with me. He loved shopping with me, because he knew I would get him a little treat: at the Stop & Shop, a fresh-baked cookie from the bakery; at the mall, a tiny transformer guy. I learned about transformers from Max. I was fascinated with the tiny plastic fire truck that, when you twisted the parts around, became a robot. So was Max.

I was also fascinated with the way he played. He was my second child, but the first one who played. He was the first little boy I ever really played with — I only played with girls when I was a girl. Back then I would try to organize the toys in bins: a box for all the different toy people figures; a box for vehicles; a box for play food; Beanie Babies; weapons and tools; and so on. Max had some toys that were a combination, though: where, for example, did you file the Chicken McNugget Man? Was he a food, or a person?

Max also played with toys from all different toy species, mixing them in ways I could never imagine. He would take the Playmobil guys and put them with stuffed animals for a picnic. All the parts of the toys would be spread out, put away in the wrong boxes, the wrong bins. And now, of course, the bins are filled with as much fluffy dust as fake hamburgers. It used to frustrate me; how stupid. Here I had a boy who actually played with toys, and yet I wanted him to play with them differently!

So tonight Max barely raised an eyebrow when I told him how I had sweet-talked the Apple Genius into fixing my computer for free, even though I’m out of warranty. I drove to the mall stewing in my self-pity. At home, I threw a tantrum and played alone with my new, clean computer. Max shuffled in, “Everything okay?” What a great kid he is. I am such an idiot.

I realized, with a sudden sharp stinging in my throat, that Max was going to leave next year, and that he already was leaving. I just couldn’t take it.

He’s doing exactly what he should be doing but it just hurt and hurt. There is nothing I can do about it. It is another thing that is just going to freaking hurt. It’s Nat all over again. They do grow up, people say, laughing at me. Oh, it hurts when you drop them off at college. It hurts when you drop them off at The House.

They just grew the hell up. I never thought I’d wish for a chance to pick up little Happy Meal toys again. Or that I’d miss watching Disney Sing-Alongs year after year after year.

I told him eventually how I already missed him, but that he was doing everything right. He pulled me into a deep hug, and for a moment, he was my little boy again. But so tall!

In case you are not aware, there is a movement sweeping the nation that is of absolute importance to autism families, that has nothing to do with cure vs. accept, diet vs. Floortime, A vs. B. It is about all of us. I am talking about insurance coverage.

Today parents, professionals, and legislators met at the Massachusetts State House in downtown Boston to testify at a hearing for Bill H3809, which is about mandating private insurance coverage for autism therapies. Fifteen other states have already passed such a measure, which will relieve school systems of anywhere from $7 million-10 million expenditures in autism support. Not to mention the millions Massachusetts families already spend, as well as their angst and energy.

I was only there for an hour, but I heard one of my heroes, State Rep. Barbara L’Italien, mother of an Asperger’s teen, give testimony about what parents like her (and me, and you) go through to help their children learn to talk, socialize, ameliorate their behaviors and sensory issues, and adjust their bodies when their neurology is working in another direction. L’Italien said there were already 111 legislators sponsoring the bill, which is tremendously encouraging, but the bill is still in Committee, so it needs phone calls to dislodge it from there.

Representative DiNatale from Fitchburg talked about a constituent of his who could not attend herself because of the need to care for her child with Asperger’s. Drs. Rafael Castro and Ann Neumeyer (a LADDERS clinician; LADDERS is where Nat was first diagnosed by the great and powerful Margaret Bauman, back in the Autism Stone Age of 1992) testified about how there are many more children with autism than even Type 1 Diabetes, but that none of these autistic children receive insurance support from Medicare, Medicaid, or private insurance (for the most part). Parents work two or three jobs to get the care their kids need. Despite there being many plans which are extremely beneficial such as Aetna Medicare Supplement Plans, due to the busy daily schedule of life not many people know about them. Which ends up in them missing plans suitable for their needs.

This is an issue that is nationwide, worldwide. This is all about helping families (and school systems, e.g., towns and cities) and most of all, children in great need. This is about fairness. This issue should not be controversial. The law needs to change. Autistic families need help NOW.

Yesterday I gave a keynote at the Midwest Autism Conference in LaCrosse Wisconsin. It was one of the best conferences I ever attended, full of practical workshops and even more useful books. Some people came from as far away as Des Moines (5 hours), but I hear that out there, they don’t really notice the time spent in cars. I found that while I was in rural New Jersey last weekend for my wonderful amazing nephew’s wonderful amazing bar mitzvah, I was really taken with how much driving my sister has to do in a day just to get anywhere. I would never leave my house if I had to drive so much. One long run just to get to a Chili’s.

But that’s just me. And just me is what they paid to see at the LaCrosse conference. I enjoyed the talk, and the questions and mingling, as I always do. But the thing that gets me is that it’s me on that podium. Because no matter what I say, just being up there and listened to transforms me into Someone Who Knows. And that’s just not really the way it is. I always say, “Some of this talk is about what not to do, so…” it gets a laugh, but it is the truth. So much of my life with Nat has been trial and a great deal of error.

So much of my life with Nat has been about figuring out what he needs and how to ask for it. That is well documented. But there is also a dirty little secret (although I’m sure I’ve probably mentioned it once or a dozen times): I get really lazy and discouraged and sometimes I just want to give up and keep him home with me. Build that apartment in the basement with a kitchenette and hire someone to live with him and take him places for fun. And that person will sometimes not work out and I will get depressed about that and just decide it’s only us, in the end.

Oh, it’s not as bad as that. And it makes me sad to think of his life like that, but then again, it also makes me feel relieved. I could just chuck the entire state and federal system if I did that; one big F Y to the Bureaucratic Nightmare that is Post-22.

But I am sometimes a role model and so I can’t say that, can I? I’m supposed to tell you all that it will be okay. That it’s doable. That if you do this and that and then yell about this or that, someone will listen and eventually do the right thing.

I don’t know if that’s true! I don’t want to sell you all a bill of goods!! I don’t know what I’m doing half the time. It’s all so much guesswork and hoping I didn’t forget something or get it wrong.

Today I just want to keep him home with me, but that feels like prison. There’s got to be something better than that, but what if there isn’t?

And so there is. If you live in the moment, rather than in the long run.

I choose this moment, at my sweetness nephew’s bar mitzvah.

It sho is a happy day.
–Mammy, GWTW

Tomorrow is the family’s second bar mitzvah of this generation (the first being Nat’s, 6 years ago). My sister’s son Paul is being called to the Torah. We are headed down to New Jersey this morning to celebrate with them. Nat, Max, and Ben are being called up to the bimah to say a blessing together!

Here is what I’m thinking about, this morning: