Susan's Blog

Saturday, June 25, 2011

Nothing About Us Without Us

I just got back from a focus group run the dynamic and talented Lydia Brown of  the Boston Chapter of the ASAN, Autistic Self-Advocacy Network.  ASAN is working with the Arc of the US, advising the Arc on its new Autism Now venture.  Autism Now is a project that is aimed at improving the lives of those with autism across the country.  I’m on the advisory board of Autism Now but until today I wasn’t as sure about what the project is.  Now I know.

Ari Ne’eman, the founder of ASAN and the young man appointed to President Obama’s Council on Disability, gave the keynote (which I missed because I was at Nat’s prom).  I sat in a room of about 25 people, 22 of whom had autism in varying degrees, for the purpose of drafting points for the core values of Autism Now.  Needless to say, my world has turned upside down.  I, a neurotypical person, was far outnumbered and boy was I aware of it.  I sat still, afraid to distract people in any way from expressing themselves.  I tried to listen more than speak.  I did make a couple of contributions (we were hammering out a mission statement and goals for the Autism Now project, from the perspective of folks with autism (Nothing About Us Without Us is the motto).

One person at my table gave me some great ideas for communicating with Nat.  He told me that I could make a booklet of Nat’s favorite Disney people and have the story be about how one of them had to call 911.  This was in response to my plaint that I don’t think Nat would know to call 911 in an emergency.  I don’t know if this would work exactly with Nat right now but what I loved was the creativity and willingness on this young man’s part to help me.  Occasionally he would turn away and flap, and collect his thoughts.  Many in the room did this, in fact.  This moved me almost to tears because it is like what Nat does, and it proved to me that there is indeed a Spectrum, and that these people who could speak (my language) could give me a clue into some of Nat’s struggles.  I loved the way every single person I spoke to asked my why Nat wasn’t there.  He should have been.  Why not?  It made me think again about how I do not always presume competence, but truly we all should.  Just because Nat isn’t getting something now does not mean he doesn’t get it on some level.  My neighbor at the table said “You should just keep asking him, and eventually he will answer you.”

This is very wise, because you can interpret it in several ways.  You can think that perhaps with repetition in the moment, Nat will able to formulate the words.  Or you can think that the repetition over the years will show Nat that you care, that this is important to you.  All of them were testaments to how atypical is atypical development.  The stories about not talking, not crawling, not eating — !  All the kinds of difficulties we run into with our Spectrum kids, to hear about how it felt to be on the other end, the actual one who was not talking, crawling, eating.  It just blew my mind.

The kinds of goals the groups came up with were:  1) More training needed around the country, including First Responders, employers, general public; 2) More flexibility in Adult Services, so that the money follows the client (guess who contributed that one!); 3) More access to communication supports, facilitative communication and technology; 4) More public education about the fact that Silence is Not Stupidity, that non-verbal people are not trying to be mean or rude and are not unintelligent; 5) Autism is a disability and a difference (in other words, autistics are also a political group who want to be treated fairly and respectfully, disability issues/therapies/cures aside).

In between each group’s presentation, I noticed everyone around me waving their hands in the air.  I was the only one who thought to clap.  Finally I asked, “what is that?”  and they told me, it is a widely-known autism thing called, “Flap, don’t clap.”  Clapping, of course, can be terrible for those with sensory issues.

Folks, there truly is a Spectrum.  There is no point in our arguing among ourselves that this one doesn’t really have autism and that one is a fraud and you don’t know how bad it can be and so on.  Let’s not play the whose kid is worse game.  Let’s not play whose kid can pass for normal.  Let’s just focus on what needs to be done:  education of the public, and education/training for those with autism.

Mostly what I brought away from this focus group was the overwhelming feeling of pride in people.  I left in a bittersweet mood, sad for how much people who are different and disabled have to struggle.  Why do some have so much and others have so much trouble?  But I also felt happy to be a member of the human race, actually, because only we have the remarkable ability to compensate for our deficits and then to reach out and help others.  And to speak to those in power with courage and patience about how we need to widen our capacity to care even more.  I applaud ASAN for their efforts.  Er, I mean, I flap for ASAN’s wonderful work.

Tuesday, June 21, 2011

A Relic: Nat’s Developmental Checklist

Ned asked me to go through a pile of old papers and I uncovered a treasure trove of documents from 1992.  Here, below, is the original checklist we made of Nat’s developmental issues.  This is the list that prompted our pediatrician to refer him, at last.  That’s Ned’s script, towards the bottom — we were a team at this point!  (And also note that there are questions about cough medicine dosages at the bottom!  And at the very bottom, simply “Max?”… 🙁   🙁  🙁  🙁

BUT, don’t forget:  he is SO DIFFERENT NOW!!!  🙂  🙂  🙂  🙂  🙂

Wednesday, June 15, 2011

Developmentally Delayed –Not Developmentally Defunct!

DayHab is not going to cut it, for all the kids with disabilities who have come up through the schools, since IDEA. These are educated children, with skills and aspirations. They have not been relegated to basement classrooms, attics, and institutions. Excuse my language, but what the FUCK is going to happen if our adult services system doesn’t change with the times?  We educate people for a good reason, not out of vanity. Let’s put those public education $ to use and not let people languish.

How will this change come about?  Not by stripping Medicaid of its funds.  But by bringing people with disabilities to the table (and their families), the government’s table, we can infuse the adult services system with new blood.  New blood means new ideas.  Medicaid Day Hab programs have got to become more flexible for all of the new populations using them.  Shelves of toys and television are a waste of our country’s most valuable resource:  people.  Any people, every person alive has a purpose, has something to contribute.  There is no such thing as people who are “out of it,” or “low-functioning.”  There is only exhausted parents, teachers, and caregivers, who have run out of inspiration and hope.  And funds.

We need some new ideas.  We need some research into adult developmental disability and how to keep those minds growing.  My way of thinking is:  We are Developmental Delayed, Not Defunct.

Tuesday, June 14, 2011

DayHab: different and yet the same

I remember visiting the classroom they intended for Nat, when he was 3.  This was the first classroom, general special ed or some such oxymoron.  It was not autism-specific.  But what did I know about autism, anyway?  All I knew was that by sending Nat to this place it would mean that he was, indeed, special ed.  It would be more than a label:  it would be an entire cloak.

When I saw that classroom I felt choked with despair.  It wasn’t the room, brightly colored and filled with art that it was; it wasn’t the energetic, smiley teachers.  It was the other kids.  I looked at the other children and I did not see Nat there.  No kid reminded me of Nat.  They mostly seemed spacey and weird.  Yet Nat was also totally spacey and weird, but that fact made me hate that classroom even more.  Nat did not belong there!  That’s what my heart said; that’s what I said, but in the end we sent him.  And not only did he belong there; he needed even more than they could offer.

I thought about that day after visiting a DayHab, the first on a list we were given to visit.  The DayHab is where the significantly disabled often spend their weekdays.  The hours are 9-3, like school hours.  A van brings them there.  They have a list of personal goals to work on.  There are therapists that come in and out.  There are shelves of brightly colored toys and games, a computer or two, and staff walking around assisting.  Not all that different from many special ed classrooms.  But with adults.  I was prepared to be depressed.

But where once there were children that made me sad, there were now adults that did not, which is odd because kids are definitely cuter.  Yet is no longer hard for me to go and hang out with highly disabled people — because I’m used to it.  My way of dealing with hard events is to plunge in, my belief being that familiarity breeds enjoyment.  This is also the way Nat comes to enjoy things, too.  Exposure, repetition, familiarity — these build a repertoire to draw upon.  So I have always visited Nat’s classrooms — all my sons’ classrooms — and gotten to know the teachers and other kids; I force myself to get comfortable.

Nat’s classmates and roommates have, by and large, always responded well to me.  It’s the same principle as I follow with Nat.  You go in thinking the best.  You fill yourself up with hope and a sense of lightness, you surround yourself with a bubble of confidence that suspends you above harm.  And the other person feels that, and wants to grab on. The moment that circuit is complete, strangeness starts to fade, you lose your inhibition, and you can connect. Simple human nature.  Learning this has given me immense comfort and strength to walk into a room full of rocking, hooting people and say hi and feel interested in getting to know them.  Now, I have to say, it’s fun to do that, because for the most part, Nat’s housemates and the disabled adults I’ve met are eager for interaction even if they’re clumsy at it.  They are really glad to see new faces, even if they can’t talk to them.  And if you treat them with interest and openness, they will warm to you very quickly.  But this is true with any person. anywhere.

Back when I visited Nat’s preschool classroom, I didn’t realize that these classmates were other people’s children.  On some level, I didn’t even realize they were people.

The world, especially this corner of it, is full of people who really have very exacting requirements of what a person has to be like.  But you don’t have to.

I think that Nat says it best:  “It’s a different that’s okay.”

Sunday, June 12, 2011

Laundry Day

Today is Sunday, another cool gray day.  A New England day, a Boston day, where you can smell the ocean or at least the harbor.  A bleach scent — (ammonia somehow?) lies beneath the gray.  A white sky, a level brighter where the sun might be, but still no shadows, no depth.  In New England, you can get a day like this any time of the year and it will feel the same:  neither winter, nor fall, spring or summer-like.

And yet this is not an unhappy day.  I am going around, straightening, fluffing, washing.  It is a day for detergent, bleach, dryers, cloth.  Ned is napping under layers of pillows to block out our noise, a trick he learned from the days of the babies.  And the boys?  All three, upstairs in Max’s room.  Max is at his desk, Ben is playing Dante’s Inferno on the PS3, and Nat is lying on Max’s bed.

Max’s room makes the most sense for the three different boy branches to converge.  His is the only room with a wall-to-wall carpet; he insisted on keeping it when we first moved in, my creature of comfort.  Max has always known how to be comfortable, physically and spiritually.  As a baby he had layers of beautiful fat, he was all chub and chunk, round and pleasing.  And pleased.  Every word he spoke had an exclamation point after it.  His eyes had smiles at the corners.  And as he grew up, and shed the outer baby fat, he went tall, an easy height hovering over most other people, so that he could be above the fray, and choose his interactions.  His bed is covered with a never-washed down comforter, bought 27 years ago for Ned’s and my first bed.  I think the hay-like breath that it exhales is utterly relaxing in its old familiarity.

That’s why Nat’s there — I think.  His head on Max’s pillow, perhaps conjuring up the earliest days of his memory, sharing a stroller with his baby brother, almost twins.  When you show Nat baby pictures of Max, he says they are Ben, because to him Max was never a baby, always a peer.

And Ben sits up, focused, sharp, interacting with Dante’s imagination, or at least some software company’s version of Dante’s vision.  Ben’s huge brown eyes slide to me, when I walk in there, interested but wary.  Why is Mom here?  But he finds me interesting, still, only newly 13 and more boy than teenager.  His hands and feet are large but his face is still small, except for his eyes and brows.  He is always thinking, his mind jumps and leaps concepts and centuries, easily but always with the tiniest edge of misapprehension.  Or is it simply his own angle?

I’m here because I want to know if Max needs his comforter washed.  My arms and my head have been full of white sheets to be washed.  I don’t know, it just occurred to me that the comforter is so old and just the perfect haven for dust mites.  I have to wash mine regularly because of the recent arrival of allergies.  Does he need that?  As always, my motherhood concerns and insights occur to me not when I want them to, but in these flashes of intuition, sudden bursts of sunlight that flash temproarily outside of my own cave.

As Max rolls the question of the comforter around in his mind, tasting it like a fine wine or at least his favorite pizza, Nat answers for him:  “Mommy will go away.”

“No, I guess it’s okay,” echoes Max.

“Mommy will go away,” Nat repeats, speaking for all of them.  So I leave, on my own white cloud of laundry, so happy with the brothers.

Saturday, June 11, 2011

Afternoon in Brookline

It’s been raining all day.  During a break in the wet, Ned, Nat and I went outside to fix the arbors that hold (held) up our gargantuan wisteria vine.  The arbors, once glorious arches, were crushed into M’s during the winter, from snow sliding off our roof.  I wanted to wait until the blossoms were over before dealing with them; today was the day.

Nat held the screwdriver and he and Ned got a few of the rungs off, while I waded into the trunks that were wrapped like boa constrictors around the iron legs of the arches.  The leaves slapped wet fingers at me as I wrestled with branches.  My arms ached as I squeezed the jaws of the pruning sheers, forcing their teeth into the rain-softened bark.  “This is what it’s like being in the Amazon Rain Forest,” I said to Ned, ridiculously happy.  It was probably because I love working in the garden with him — it is a rare occurrence.  I doubly love it when Nat helps.

At one point, Nat was holding up the semi-detached arch, and as Ned stepped down the boulder steps, I saw the arch slip.  To my horror, and before I could reach it or get any words out, it hit Nat right in the neck.  “GO INSIDE, GO INSIDE,” Nat screamed, the very same cry he made as a two-year-old whenever he got upset.  Or maybe it was “go outside.”  Nat jumped up and down on the driveway gravel, jackhammering the stones into deep bowls under his feet.

“Oh, Natty,” I said, trying to soothe him.  But I also realized it must have hurt so much and, God dammit, it makes you mad when you hurt your head.  Who doesn’t scream and swear and want to punch something.  “It hurts, I know,” I said, “Just let it out.”  I did not tell him to calm down and stop screaming; I think that was the first time I ever just completely felt that the tantrum he was having was exactly right.  He jumped more, screamed more, his legs like pistons; his fists seemed to be waving him higher.

I led him inside when he was ready and he let me ice it.  It seemed fine, once I looked at it carefully.  When we were done, he sprung up and put his shoes back on, my brave young man, getting back on that horse.  Ned and I worked for a while longer, and then the rain came down in fat droplets.  “I guess we can’t take our walk, Nat,” Ned said.

“Take walk.”

“We can drive, Nat.  Where should we go?”  Ned asked.

“Drive to Starbucks.”

“Yeah, Nat, let’s do that!” I said.  “But first, I have to nap.”

I lay down with my head in Ned’s lap while he read and I fell into a deep sleep.  When I woke up, Nat was ready to go.  We got into the car and I got the idea to see a movie.  Ned and I decided on the new Woody Allen, Midnight in Paris. It was playing right in town, in 15 minutes.  I had no idea what Nat would think of it, but we figured we’d go anyway.  Nat readily agreed to candy in the movie instead of brownie at Starbucks, and after standing in a long line, miraculously we got tickets.  Soon we were in our seats.

Midnight in Paris is about serendipity.  A young writer takes a walk at midnight down some lonely Parisian alley and finds himself literally transported back to Paris in the 1920’s, in the car of F. Scott and Zelda Fitzgerald.  The movie was delectable as only Woody Allen can do it, making you wish you were beautiful and free in Paris.  I wondered what Nat was thinking about it.  Could have been a million things.  I felt content not to know, just glad that he was sitting next to me, okay with being there, unhurt from that stupid arch, shoving Junior Mints into his mouth.  We, too had our own bit of serendipity and luck, being transported for a while from the gray sleepy June day to the golden glory of Paris.  Nat watched quietly, paying special attention whenever there was music or singing onscreen.

When we got to the car, Ned asked, “Nat what was that movie about?”

Nat smiled, and said, “You fall down.”

Ned said “No, Natty!”  We  laughed — even Nat did — and I said, “As good a movie review as there ever was.”  And we went home, pleased with our own glory, of just being alive and together on a sodden gray day.

Saturday, June 4, 2011

Broccoli Days

So we learned yesterday that Nat has been designated a Priority One by the DDS (Dept. of Developmental Services) which means that in all likelihood, the state will fund an adult residential placement with 24/7 care.  Nat, in the macabre irony of the world of disability, is lucky that he is so severely disabled.  He will have a home and caregivers for now and especially for when we are no longer able to do it.  What will his home be?  That is still the question.  If I can get all the pieces to come together in time for his transition out of school in November, then he can live in my envisioned group home, the one I’ve been working on for nearly a year.  But if that doesn’t work, there are a few back-up options, like another group home that is just beginning in a nearby town, or one that is already up-and-running.

That is excellent news.  As the DDS Liaison put it, “He will be safe and fed.”  Basic needs met.  But the salad days of public education entitlements are ending, the days of fully-scheduled, mind developing endeavors, the era of the intricate skill-heavy IEP, finit.

But this post is not about that.  I’ve been thinking about Max these days.  My feelings with regard to Little, Little (his very first nickname, which even then was said with irony, my 100th percentile baby boy).  The other day I brought up something at dinner that we’d talked about months ago, about NYU and the Tisch School, where he’ll be going.  When I started asking him about it, he said, “I don’t want to talk about it.”

I said, “But is there something — ”

“I just don’t want to talk about it.”  His face was red, and very sharply outlined, which is how he looks when he’s mad.  I felt this mild remonstration like a fingerpoke in my belly, and my face felt hot.  Here was Max, my gentle giant, setting a boundary with me in a really direct way.  Pretty rare occurrence.

The rest of dinner I ate quietly, feeling anxious that it would happen again, that anything I said would be snapped at.  And I wouldn’t know when it would happen or why.  I felt sad.

When I woke up this morning, it all didn’t seem so bad.  Max has to do this.  He and I have a great relationship, but we are still mother and son, and so this is how a happy-well-adjusted teenage son breaks away from a loving, supportive mother.  No matter how great the relationship, it has to happen.  Max is setting the boundaries, and I have to stand behind them.

I got to thinking about how different it is with Nat.  I have to set Nat’s boundaries for him, and the way I do that is by having him not come home several weekends a month.  I am doing that to teach him independence.  I have to do it for him, because he cannot do this on his own.

I think that’s why it has been so hard for me.  It is hard enough having Max changing the rules and dynamics between us.  But with Nat, I have to do this difficult and alien thing myself.  I have to make myself do it, the way I sometimes force myself to eat broccoli.  It tastes terrible, sometimes makes me almost vomit, but it is the healthy thing to do.

He’s not here this weekend, can you tell?

Wednesday, June 1, 2011

Karma is understanding what is there

Last Thursday I discovered a litter of kittens in my shed.  They were golden-orange, just like the kitten Ned and I got when we were first married.  I called her “Kotyonok,” which means kitten in Russian, until we realized that her true name was Ballyhead, or Bally for short, because her head was shaped like a perfect ball (when you pushed her ears down).  Bally was a very wired cat, kind of crazy.

But when Nat came into our lives, Bally tried to bite him when he cried, and so we gave her to a shelter.  I was so sad about this that Ned went and got her back, but then I got scared for Nat again, and he took her back for the last time.  I asked him over and over if they would put her to death and he said “No.”  There’s a part of me that has always wondered if he lied to be kind, or if it was the truth, that Bally was adopted again and lived a nice life, crazy among some other humans.

The kittens in my shed felt like a second chance.  Karma.  I made a mistake with Bally Girl, and now, here were some new ball-headed kittens.I have become very attached to them.  But when we got back from a short Cape Cod vacation for Memorial Day weekend, the kittens and their mom were gone.  That night Max discovered them under our neighbor’s porch, and now the plan is to trap them with humane traps from the MSPCA and bring them in to be cleaned up, neutered, and vaccinated.  I want to keep them all, after they’ve been checked out, but unlike my Bally days, I’m now allergic to cats.  What does that mean, in terms of Karma, then?

I have been thinking more deeply about this, since the kiddenz showed up.  Something about them is tied to Nat in my mind.  Not just the fact that he was the reason I gave Bally away, but the way that he came into my life when I really needed to be needed.  That is exactly what I thought and wished to myself before getting pregnant:  I want a baby, because I really want someone to need me.

I got need up the wazoo with Natty.  But I want to make myself perfectly clear:  Nat was not sent to me because of my wish.  I do not believe that things happen For a Reason.  I don’t think the kittens came to me to give me a second chance with little orange cats.  I think that things happen all the time, but it is our own need that allows us to see them in a particular light.  I need some little orange kittens now, with my two older babies grown up and in the process of leaving to make their own lives as adults:  Nat is finishing school and moving to a nice home with roommates, and Max is going to college.  I need those kittens to fill the void that is opening in my heart.  But a different year, they would have been a curiosity, and I would probably have let Max deal with them.

It is more romantic, perhaps more satisfying to see the gifts in our lives as being Sent to us.  We want to feel important, unique.  We want to explain the singular occurrences in our lives, like autism and feral kiddenz.  But lately I feel that it is really just as good to merely be able to see something that is right there with us, and find that we are open to loving it and enjoying it.  Perhaps the gift is having the clarity to recognize a golden opportunity — or a golden kitty.