Susan's Blog

Sunday, June 28, 2009

All My Children

I don’t mean to be flip, but sometimes I think I understand one aspect of Divorced Dad syndrome, because of how it is when Natty’s home: I spoil him. I feel the need to make up for the time he is not here, so I want to squeeze in all of the things he loves for the weekends. I try to get all of his favorite meals and treats, I bake with him, I encourage him to listen to his favorite CD and watch his favorite vids. I listen carefully to his self-talk to determine what he’s thinking about and wants. I leave him alone and then I can’t help myself and I intrude by touching his hair or kissing his face and inhaling his skin. I think it’s a mother’s right, because we were once attached physically, and because we don’t relate in the typical mother-son fashion, I feel more liberal to make my own rules. Mostly those rules are made in strict observation of Nat’s responses to me.

The downside is that I don’t feel quite natural with Nat anymore. I don’t feel our old relationship. I feel much more aware of him as a separate person, despite what I do (mentioned above). It is as if, when he comes home, I am straining to let him back into my life because I have to close up when he goes back. Even though these days I am relieved and happy when he goes back, because then I am free, I still feel a profound lack of him that is an open and gaping space inside me.

When Max and Ben go off somewhere for the day, I am also elated, but there is no guilt attached. I feel like I’ve earned it and that every mother in the world would agree with me on that. But when Nat goes off, and I feel elated to have time to myself and my other boys, and to have no worries about aggressions or tantrums, I at the same time feel that I have done something wrong to him.

The thing I think I’ve done wrong is to get on with my life without him in it every day. I know that so many would say that indeed, I have earned that, but I bet that if it happened to you, you would not be so quick to feel that way.

No, I am not ashamed that he has “Gone Residential.” I now see that this is a higher level for him, because there at The House he has learned how to get what he needs out of people who are not Mom and Dad. He has figured out how to get along with all kinds of kids. He is put to work every day, on household chores and shopping. He does conversational practice and plays with others. He would not get that here, except sporadically. Here he would get a lot of love and attention, which feeds his soul, and he would get a lot of sweets that would feed his body, but he is not asked to grow much here. I know that.

It is not shame that I feel. Or if it is, it is the shame that comes along with grief, when a person begins to let go of the missing one. They realize that they are not thinking of him every day. That they’ve done things with their former energy channels. That they seldom bake.

With Nat gone most of the time, I get to play and play with Ben. I never enjoyed playing with a child of mine the way I enjoy him. The way he anthropomorphizes his small stuffed creatures (Z-Brayes, Lobby the Lobster, tiny Link, Drop the Penguin, and Ramses the Ram) feels so believable to me. He has infused them with all of his own sweetness, and they have come alive to me, as beings that I protect (from Ned flicking them across the room, from Max putting them wayyyy up high out of Ben’s reach). I store them in my cardigan sleeves to soothe them when they get upset. I teach Z-Brayes how to skate along the dining room table. I stroke Lobby’s red ruffled back until he purrs in his bubbly-watery voice.

And then there’s Hannah, Max’s girlfriend, who has also come into my life fairly recently, kind of right when I needed it, and who allows me to have — well is this okay to say? — a daughter. I just love her. I have never known anyone like her, so much like a hoppy bunny. She is a beautiful creature, funny, devlish, innocent, smart, and just plain adorable, and it is beautiful for me to see how Max loves her. She is here most of the week, for dinner, and so I still have 5 to feed. When Nat comes home, it is 6, which also feels natural. I think I was meant to have a very large family.

Something has happened which has set me free to love and to nurture even more than before. When Nat moved out, it’s kind of like Z-Brayes and then Hannah moved in. Not because Nat moved out, but somehow, alongside that event, now I have even more loved ones to take care of.

Thursday, June 25, 2009

Live for Three

I eat for two
walk for two
breathe for two now
–Natalie Merchant

The 10,000 Maniacs song “Eat for Two” was a hit when I was 5 months pregnant with Nat, the spring of 1989. I remember first hearing it as I was pulling up to our condo in Brookline, a side-by-side brick bowfront Victorian; we had a small apartment on the top floor. This was the first place we ever owned.

Those lyrics went through me in a rush of adrenaline; her pregnancy mirrored mine. “Five months how it grows, five months now I begin to show,” are the last lines. It gave me chills; I was just beginning to show, also. And feel his little sweet kicks. But the song was so melancholy, not at all what you usually hear in songs about being pregnant. She was pregnant by accident.

I was pregnant totally on purpose. I was 26. It was late February. After days and days of having this weird insatiable hunger, I went to the doctor (I didn’t even take a home pregnancy test!) and found out. But that day, Ned was away in Texas, at a conference. I told him over the phone. He was attending a talk at the time, and could not say much (but, being Ned, that was the usual), but he doodled. He drew all these round, wobbly shapes on a piece of paper, during the talk. Fetus shapes, which he still has in a drawer or box somewhere.

Once I knew I was pregnant, thoughts about anything else just ground to a halt. I quit my job, which I had hated for months. (I was a writer at a small software company in Cambridge.) I had nothing to do, but that’s what I wanted. I would take long walks around the Reservoir (where years later, I would run with teenage Nat). I would paint rooms and buy baby tee shirts. I would think and think and think about what my baby was going to look like and how I just could not wait to start my real life.

I also had intense, stomach-cramping fears, terrors about birth defects. I worried about toxoplasmosis (I had a cat). I worried about lead (old old house). I worried about any stray thing that can happen to a fetus and give him Something Wrong. (I had no such worries about Max, incidentally, except for the one time on the Cape when Little Nat came along and dropped a huge rock on my pregnant belly. I did worry some about Unborn Benj, but only the fear that he was somehow a fragile fetus.)

But most of the time, Nat was the dreamchild in my head. It’s interesting to me that humans are required to have months and months of head time with their unborn; probably to get them used to the idea of being permanently attached and in charge of another creature.

On the weekends when Nat is home the house just fills up with limbs and noise. My Saturdays and Sundays have a structure to them, an old habit I slip into with Nat around: breakfast before morning events; lunch before afternoon events. Microwave bacon and bagel and butter is his breadfast. (He does it all himself, but he needs me to jumpstart him, by asking if he’d like to have breakfast. He will just walk and walk in a circuit, mentioning “eggs” every now and then in his self-talk, but he will never start his own meal prep. That is still a goal for us.) For lunch, it is leftovers heated up. And fruit.

My boys always know that they have to have several portions of fruit a day. Even when I was on Atkins and could not eat fruit, I still had them eat their fruit. I stand there at the sink in the back kitchen, because that is where the disposal is, and I automatically set out three small bowls and I slice up strawberries. Even when boys are scattered throughout the house and I have no idea when, for instance, Max will amble in, ready to eat, I know that I have to cut up berries for three. They are each fully capable of preparing their own lunches, but still I do it. Old habits, old bonds.

Tuesday, June 23, 2009

I’m Speaking in Wyoming

I just found out I am going to be the keynote for a conference in Cheyenne, Wyoming, for the state’s Early Intervention and Education Program, on August 10, at around 1pm. Very excited; I haven’t been to Wyoming since I was 12. Just the name “Cheyenne” is so amazing! It is SO western!!!! Yay. I have a few different power points that I use but I think with the new book I should use some of the new material. I love having this kind of project to prepare; pulling together just the right information and message is very challenging and fun.

Going To Hell in a Handicap Basket

If you live in Massachusetts, please use this simple application to email the Governor about the draconian budget cuts to the Department of Developmental Services. Here is what I wrote:

Dear Governor Patrick,

I am the mother of a nineteen-year-old severely autistic young man. He
has been doing terrifically well because of his education and his
vocational opportunities. However, with the budget cuts at the Department
of Developmental Services and other disability agencies, I am very worried
about the impact on individuals like Nat, who have intellectual
disabilities — and their families. The current budget is a potential
disaster, a return to the dark times when disabled people had no hope, and
their families were the only support they had. How can that be, in a
state like Massachusetts, once a leader in civil rights and human services
causes??

The cuts total more than $90 million ($43.5 million at DDS alone), which
will hurt so many people: ? Older caregivers at home — will be even more
overburdened ? Adults with disabilities – will lose supports (and their
jobs as a result) ? High school graduates with disabilities – will be left
without options ? Children living at home – will be isolated with no
funding for services

I have just two requests:

1. Please do not hurt us more. We beg you not to veto the funding that did
make it into disability line-items. Our friends and families face the
same financial uncertainties as others and need these essential supports.

2. Please issue a deficiency/supplemental budget to address the vital
programs that we and our loved ones need — services such as
employment/day, family support, transportation and turning 22 at DDS,
supported employment, extended employment and independent living services
at the Mass. Rehabilitation Commission, and Early Intervention services at
the Department of Public Health.

Thank you,

Susan Senator

Sunday, June 21, 2009

To Dad

He’s strong and seasoned, stretched thin like a piece of old leather
His hair flutters around his head like a nest of fluffy grey feathers
Times I called him on the phone and cried
So worn out so sad I nearly died
He always has a way to lift me up again
whether by joke, or story, or hand-in-hand
Wise and centered even when he ain’t
He keeps it together, all of us — incredible restraint
My dearest wish for him is to keep running strong
Right next to Mom, his inspirational song
The thing in my heart is to just tell the world
I’m so happy to have been and to always be
his little girl.

Our Connection is A Parent

One of the pleasures of Special Olympics is the parent community. I don’t know if there is any other place on earth where people just get it, so easily. I can look anyone in the eye at the State Games and they look right back at me, and we just know. I can just strike up a conversation with a perfect stranger, while standing in line at Richie’s Slushies, and it is like we are old friends.

Yesterday, just before Nat’s third and last race, we were standing there together, eager for our blue slushies. Suddenly, but typical of me, I grabbed Nat and kissed him and I said, “One more race, you! You better win!” And the man in front of me laughed and said something like this, “Yeah, forget all this other stuff, let’s see some gold medals!”

So later on, there was quite a flurry as three gorgeous young women walked by, with sequined sashes that read, “Miss Massachusetts.” Greg, a teammate of Nat’s, called him over and said, “Get your picture taken with Miss Massachusetts, Nat!” Nat jumped up eagerly and walked over. Everyone assembled around Nat and we all waited for someone to snap the picture.

Oops. That would be me. But I didn’t have a camera! Ned was off at the ATM (more money needed for more slushies). People said, “Use the camera in your phone!” But my phone is so old and crappy that it doesn’t have a camera.

Suddenly a dad in the crowd took the picture. I gave him my email address and he seemed to be memorizing it, but — yeah, sure.

This morning, this appeared in my email inbox:

Thank you, Kindred Spirit!

ps., Nat won the gold in his next race, the backstroke.

Thursday, June 18, 2009

Hail Fellow Hel-met

The other day Ben went skateboarding for the first time. He is a very indoorsy type, sporting pale white skin until the week we go to the Cape, where he then turns a delicious mocha brown.

Ben hates the helmet, because he hates the way he looks in it. What can I say to him to make him feel better? I hate the way I look in mine, too! Like a long-faced bug, with stupid fat curls spewing out the back. Ben is so much like me, that often I do not know what to say to help him without being a Giant Hypocrite, as he says.

So he went skateboarding because he learned it in gym class. I sat outside with my laptop (Twilight Princess). He wanted me to watch, but being the obsessive nutcase I am, I watched only with one eye.

Then Ben fell. He went flying as you only can from a skateboard that shoots out from under you. I missed it entirely, fool that I am. He came walking towards me, smouldering. “I am really glad I was wearing this helmet,” he said.

“Oh my God! You fell — on your head? !” I gasped. “Let’s get ice. Let me kiss it. Oh, oh, oh!” Oh, oh, my B. Well, I couldn’t have stopped him from falling even if I had been standing there, right? Thank God he was wearing that helmet.

That helmet is now my favorite thing in the entire house.

How Does Your Garden Grow?

Mary, Mary quite contrary,
How does your garden grow?
With Birds of Hells and plastic shells
In ugly shades that really blow.
— Nursery Rhyme in My Head

One of my earliest memories is the smell of the tomatoes in Mom’s garden. She claims she has a black thumb, but my memory does not lie. That smell drives me crazy, in a good way. Another early memory is of eating garden dirt from under my fingernails: so delicious. Mom was horrified, and I suppose I had pica, but there was something so fresh and salty about its taste. Well, anyway.

Gardening is one of my passions. My heart sings when I see a garden that is just right, and by that I mean, balanced (not necessarily symmetrical, but balanced, with a feeling that it makes sense); colorful, not clashing; planted with staggered bloom times; planted with some idea of kindness as to how a plant survives; and not stupidly extravagant. I have very strong opinions about gardens, as you might, too. My opinions are born of years and years, a lifetime of yardwork and gardening. And general crabbiness. And sometimes jealousy.

Sure, de gustibus non est disputandum. But still — hear me out. Here are a list of garden types that just annoy the fertilizer out of me. I gotta express it, so please bear with me, and don’t hate me because I’m moodiful.

Garden Types I Hate.

Trailer Trash Gardening. When Nat was a baby, I lived in a town that had almost no taste vis a vis le jardin. Plastic bunnies, plastic flowers in the winter, flowers in a long straight line, of just red pergarlonium (what most people call “geraniums” are not). Red! Mixed in with orange marigolds. Or impatiens, planted in full sun. Or how about that horrible, ugly feathery stuff — celosia? All lined by half-buried fake pink bricks. I hate fake, I hate red in a garden, I hate annuals. They are a waste of money. They are the grass of the flower world, because you have to plant them every year and spend money on them every year. Whereas perennials are more interesting colors and shapes and they come back year after year. You just have to know what sun you have and what soil you have. Usually, for the best perennial types (English garden kinds, like delphinium, poppies, coreopsis, lavendar, echinacea, gaura…) you need full sun (a good direct 6 hours) and well-drained soil (not clayish New England and not sandy).

Lawns. Don’t get me started. They waste water, trying to keep them green. They are usually full of chemicals, to keep them looking like golf courses. People generally use fuel mowers, so they waste electricity or gas, and pollute the air. And, if you can grow grass, it means you can also grow perennials.

I have a lawn, but it has gone to seed. I like it that way, and so do animals. I get tons of birds, squirrels, and rabbits! All the cute kinds of creatures. And no chemicals, and I use a push/rotary mower. I get a workout and it produces a soft, soothing “clickety-click” sound.

Butt Ugly Gardening. Hands down, the worst floral thing in the world, that swamp thing they plant in the containers all around my town. It rises like a scarecrow out of orange plastic barrels, on every traffic divider in town. Yet the schools had to make cuts in their budget. This plant looks like a Bird of Paradise that is about ten pounds overweight. Dodo of Paradise. Bird of Hell.

Looks Like Something From Uranus Gardening. Several houses around town have ghastly gardens. One house, has chopped-down evergreen-ish things, that always seem stumpy, like the thing was amputated from gang-green, and yet is still sick. This same house plants one shrub next to a small tree next to a flower next to a patch of fancy grass, all in a line, as angry and diverse as the queue at the Department of Motor Vehicles.

Stupid, Thoughtless Gardening. Another house I see just suffers from utter stupidity. Renovating as if there were no poor economy, these folks have bulldozed the entire front lawn which was ringed by full-grown daphnes and peonies. Daphnes and peonies, for God’s sake! In the trash. This should be a ticket-worthy offense. To add injury to injury, they planted a hedge of that ubiquitous suburban badge of the bland: boxwoods.

Too Much Money, Not Enough Brains Gardening. This house plants full-grown, fully-blooming roses everywhere, and big trees, rather than waiting and nurturning smaller plants into a long and healthy life. They rip out whole hedges that they have planted, for unknown reasons, and then throw in a whole new row of things, and then rip them out, too! $100 a tree! They treat shrubs and perennials as if they were dandelions. I guess when I look at them, I suffer from green-us envy.

Lazy Gardening. Another house suffers from has a tiny, postage stamp property, and yet they use a lawn service! This lawn is so small they could just send their cat outside to graze and it would be fine. The lawn service guys use those decibel-blasting leaf blowers just to blow away sidewalk dust, that they could just as easily sweep up and throw away!

If I’m going to have to wait six months every year before I see the lovelies of life, then I damned well want to see good gardens. That’s all.

Wednesday, June 17, 2009

Fabulous Day

After taking a 12-mile bike ride, and then meeting with a friend who is creating a terrific Day program for DD adults, I wrote and wrote.

It took a month, but I’ve just finished all of my editor’s suggested edits to the MS. I really like it. It has many sequel-like aspects to it, as well as a lot of new stuff, like the voices of those I’ve interviewed, woven in. Below, I’ve pasted in the working title and chapter headings.

The Autism Mom’s* Survival Guide:
Creating a Balanced and Happy Life While Raising a Child With Autism
(*For Dads, too!)

Introduction

1. Maintaining Your Perspective While Coping with the Uncertainty of it All
2. Surviving the Great Autism-Therapy Chase
3. Spending Time With Our Kids – and Enjoying It
4. Me, Myself, and I: Why Self-Care is Essential
5. Improving Our Love Lives : Yes, That’s Important, Too!
6. You and Me Against the World: Getting What We Need From Others
7. Letting Go: When Our Kids Leave Home
8. Looking Toward the Future: Connection, Advocacy, and Perspective
9. Concluding Thoughts

Afterword
Recommended Reading/Viewing
Index

Sunday, June 14, 2009

Once Upon a Dream

When I was pregnant with Nat, I had a dream about him, and I saw him clearly, a two-year-old boy, standing in my sister’s room in my childhood home, laughing and running away from me. I can still see him as plain as day, Dream Nat, on my sister’s kelly green shag carpet (we grew up in the 70’s after all; mine was orange). He looked exactly the way he ended up looking, as a toddler. Even so, I did not believe the dream at the time and I continued to imagine that I was going to have a girl.

Well, we all know the end of that fairy tale. I did not ever have a girl. But what a set of boys I had! And how appropriate that Nat, my oldest, would be the first to go to a prom, even though a few have been offered to Max already (but Max is determinedly Alternative, and sneers at things like proms).

Yesterday, however, we learned that Nat’s school had messed up in terms of obtaining the tuxes for the boys. I was mad. I said out loud, “There is no way in hell that Nat is not going to have a tux for his prom.” And I knew that was true. But how would I do it? I had three hours to get him a tux, in the middle of June, wedding season. I frantically called tuxedo places, but the only one that answered at 9 on a Saturday morning was Read and White. The only place that was not part of some big chain, the only place that is not a “Wearhouse,” (such an attractive place to get clothing from) or the name of a hemorhoid-soothing pad.

Like Dorothy, I asked the Read and White guy, in a panic, “Will you help us? Can you help us?” As if he were the wizard, the man behind the curtain. He was just so calm and soft-spoken, that I calmed down, too.

We drove over there and we were the only customers in the store. The 60-ish man behind the counter understood everything right away — everything and everyone — and with the same laid-back voice he’d used on the phone, he began getting Nat the pieces of his tux. He would whip out the tape measure and try to get a bead on Nat’s shoulders or waist, just in time before Nat would dance away on one of his treks around the shop. He instructed me to pick out a vest — so many lovely colors! — in a size Small of course, and Ned helped Nat get on his pants. I chose a pale baby blue.

This man was like a magical being, who materialized just when we needed him. A Fairy Godfather. Just puttering in his shop, transforming Nat for his prom. Bibbity bobbity boo.

Eventually all of the parts came together and Nat emerged from the dressing room. He looked like the young Robert Redford, in The Great Gatsby, I realized, and said that to Ned, who just laughed at me. But he really did. I had an odd feeling, something like deja vu. Then, as I was buttoning up the last of the vest buttons, I felt a song in my head, the one from Sleeping Beauty. So I said, “Why, it’s my dream prince!” and then I started singing,

“I know you, I walked with you once upon a dream.”

In a flash I remembered when I did, indeed, walk with Nat once upon a dream.

[youtube=http://www.youtube.com/watch?v=C-6fYCMqSN4]

Saturday, June 13, 2009

The Picture of Elegance

Nat’s prom, June 2009


Our Dance Card is Full

It is morning. I got up very early, because I heard Nat talking to himself, whispering, actually. I love that sound, even at 5:45 am, (Ned feels differently). When Nat is home he just fills up the house with his big walking, his self-talking, and his smile-face yellow tee shirts. I have really compartmentalized my weeks. Monday through Thursday I am in Susan Work Mode, where I am busy with Ben, Max, writing, household, and workout. Friday comes and I’m thinking of Family of Five, of Nat coming home, how I have to be here at 4 for his van. It used to be every day. It’s a huge change.

On Fridays I have to remember to check my datebook to see what the weekend holds. I also write stuff down on the kitchen blackboard, which is all smeary with orange dust; the tiny orange stump of remaining chalk fits just between my fingertips, so writing on the blackboard is reduced to bare-boned language: 6/11 Max tutor. 6/16 Max dentist. 6/18 Ben field trip.

6/13 Max ACT. Max is taking the ACT today [a similar test to the SAT, but better in many ways], in just a few hours. He has gone through a minimum of individualized tutoring through those one of those ubiquitous Kaplan test prep factories. Those guys were actually pretty amazing, the way they tailored the sessions precisely to Max’s needs. They even called to wish him good luck.

I am newly impressed with Max and his ability to advocate for himself. He figured out fairly early on this year that there were things he would have to do if he was going to be able to do what he wanted in life. He also realized he was up against some stiff competition at Brookline High, so he has quietly but seriously gone about his junior year at a constant, successful pace. Typical of Max, with no fanfare, just sailing his yacht through any kind of waters, tan and sure, evenly and smoothly, a tidal wave of achievement in his wake.

The other item on the messy blackboard: 6/13 Nat prom. Yes, today’s the day. The House took the guys to the tux place and got them fitted. The boys picked out their own colored accessories. I asked Nat what colors he picked and he said, predictably, “yellow and orange.” I told Ned, with a smile, and he said, “Nat will be able to carry that off.”

Nat’s teacher prepared the boys all week for the dancing. She created social stories for them about the prom, from the special clothes they will wear to asking a girl to dance. Each boy has a card with Meyer-Johnson pictures and/or text reminding them of what to say. Gives new meaning to the phrase, “Dance card.” They can even hand the card to the girl, and wait for her answer.

Even if she is non verbal, how could she not say yes?

Thursday, June 11, 2009

The Latest Cut is the Deepest

The Brookline Tab published my oped this morning. You can read it here.

Wednesday, June 10, 2009

I Did Not Livre It Alone

The first phase of revising the book with my editor is finished. One more read-through and I turn in this draft, on Monday. After that, more minor edits follow, and then galleys. We are really on our way; I can’t believe it. When I first started writing this book, I was so overwhelmed by the task of talking to other parents about their experiences with creating happy and somewhat balanced lives in the face of autism. I knew there would be a huge learning curve for me, not only of listening to and digesting so many stories and viewpoints, but also learning how to listen and what to ask.

I actually scrapped the project for a while and slipped into a bit of a depression. I felt like worthless shit, to be quite honest. I wasn’t a writer anymore, or so I told Ned. Still, because I actually was still a writer, albeit a frustrated one, I worked on my novel, “Dirt,” for a while and figured I’d just be a novelist from now on.

That is so me. I always think that something HUGE has ended and that all is lost. Mrs. Melodrama. Well, I guess I like it that way, because then the pleasure of the turnaround is so intense!

Once I figured out how to write the thing, it wrote itself, of course. The interviews were a pleasure, though exhausting. Figuring out how to weave in the story of Sue, Ned, Nat, Max, and Ben past and present was a challenge — especially when I had to go back, once again, to Nat’s baby journals and see how sad and lost I was.

It has been really delicious to realize that I and so many others have figured out secrets to happiness, given our particular hardships. I just feel alive with the pleasure of my complete book, full of new and old friends, and also reconnecting to old and new Sue.

One last thing I need for my book (my editor requested this): a short list of books and websites that have given you a feeling of can-do, hopefulness, and optimism, but that showcase these feelings in the context of struggle, despair, sadness, and challenge. These do not have to be autism books. I am asking this of all my readers, (for example, Donna, Don, Andrew, Colleen, Pete, et al.) even those not dealing directly with autism. Give me the name of one book, website, or movie that has made you feel like life is worthwhile, no matter what your struggles are.

I probably won’t list your book, to be honest. But I want to see what produces these feelings of happiness about your life. I will probably take a look at the books you mention, just to get a feel for what inspires other people. Now that I am in the habit of finding this out, I don’t plan on stopping.

Monday, June 8, 2009

Yes We Can — Do Much, Much Better Than This

I have never felt so disillusioned in my life. I campaigned for Deval Patrick for Governor. I watched him speak at the Perkins School for the Blind, where dozens of disabled adults questioned him about their rights and their quality of life needs and he said, “Yes we can,” over and over again. He promised that things would be better under him.

I AM FURIOUS!!!!!

While you read this, think to yourself, “And they just planted new trees along State Highway 9…”

TREES!!!!!!!! While the disabled will go without any services. While they live with their aging parents, staring at the walls. All those years of public education, for what?

Here is what the ARC of Massachusetts sent me:

Governor’s Revised FY10 Budget “Shocking”
Slashes services for 15,000

Governor Patrick released a revised budget Friday that is alarming for disability advocates, cutting services to as many as 15,000 people with disabilities.

The Governor’s proposal would decimate essential services at the Department of Developmental Services, with drastic cuts to Transportation, Day and Employment, Family Support, Autism and Turning 22 services. It also completely eliminates funding for Adult Dental Services, which are used by individuals with intellectual and developmental disabilities.

The Governor’s release of a revised budget now, in the midst of the Conference Committee deliberations, is extremely unusual. Since official revenue projections have dropped sharply since the Governor put forth his original budget proposal in January, he is mandated to file another budget based on the updated projections. People who have been involved in state politics for 30 years say they don’t remember this ever happening before.

Because it is so unusual, the impact of the Governor’s revised budget is not fully known. However, the Governor’s numbers send a disturbing message to the Legislature and the public that somehow disability services can function with such drastic cuts. The ball still remains in the Conference Committee, and that’s where our efforts must be focused, but we the Governor’s troubling proposal means that we have to advocate that much harder.

Arc President Frederick Misilo, Jr., said of the cuts, “I can’t understand the Governor’s thinking. Instead of slashing critical services to our most vulnerable citizens, he should have looked elsewhere or recommend the revenue needed.”

The Arc and the Disability Policy Consortium have come together on a joint statement denunciating Gov. Patrick’s decision to eliminate adult dental benefits under state Medicaid plans, which provides 600,000 people with dental care. The Arc and DPC stated:

“A significant portion of recipients of these services are individuals with disabilities who have no other means or obtaining dental care. These individuals already face significant barriers in accessing quality health services. Data collected by the Department of Public Health indicates that people with disabilities are far less likely to see a dentist on a regular basis when compared to people without disabilities. People with disabilities are also far more likely to be missing six or more teeth when compared with nondisabled Massachusetts residents. Eliminating dental benefits will only result in increased poor oral health, leading to infections and more complex medical issues. In the end, elimination of these benefits will result in increased medical costs for the state.”

Together, the Governor’s proposed cuts to the Department of Developmental Services will mean that nearly 15,000 individuals with disabilities will have no place to go during the day, no transportation to get to their jobs or grocery stores, no in-home support or respite care, no residential services or no transition help when they graduate from high school. These cuts include:

§ 1800 people losing Transportation services ($10.85 million cut)
§ 2,600 people losing Day/Employment services ($38 million cut)
§ 9,000 families losing Family Support/Respite services ($28 million cut)
§ 44 people losing their home ($4 million cut)
§ 624 people losing Turning 22 services – which helps them transition from school life to adult life ($6.6 million cut)
§ 730 people losing Employment supports through the Mass. Rehab Commission ($7.4 million cut)

“These cuts are simply not sustainable,” said Leo Sarkissian, Executive Director of The Arc. “To cut services for individuals and families with disabilities during this difficult period would be unconscionable,” he said.

The release of a revised budget by the Governor at this time of year is an extremely unusual occurrence. It happened because official revenue projects have dropped sharply since the Governor released his original budget in January – by law, he is required to submit a revised version that will balance the budget. The Governor’s budget does not take into account the sales tax passed by both House and Senate lawmakers in their budget proposals. .

Because it is so unusual, the impact of the Governor’s revised budget is not fully known. However, the Governor’s numbers send a disturbing message to the Legislature and the public that somehow disability services can function with such drastic cuts. The ball still remains in the Conference Committee, and that’s where our efforts must be focused, but we feel that the Governor’s troubling proposal means that we have to advocate that much harder.

Saturday, June 6, 2009

Ask a Mommy

Sometimes I wonder about the prevailing autism theory about generalization, about what a challenge it is for some autistics to generalize a learned skill from one environment to a different one. While I have observed that Nat does have trouble generalizing from his school to The House, it seems that his generalization to the latter, newer environment is no where near as lagging as it is here at home.

All this time I have accepted the expertise of docs and therapists who posit that generalization difficulties of autistic people are exhibited when it comes to connecting the dots, extrapolating, and jumping from one area to a similar one (I consider all of these under the category of generalizing). What I have learned over the years is that this is because of limbic system breakdowns in autistics, whereby the usual limbic function is to help information transfer from one area of the brain to the next, connecting disparate information and allowing the brain to pull it all together. (Please understand that this is only a layperson’s interpretation of something two different neuropsych types told me years ago.)

These connecting deficits in autistics’ brains, so goes the theory, explain why someone with Nat’s issues take in a lot of info but then cannot connect it in a meaningful way, and why schools then use “scaffolds” to connect info for them. Why Aspies collect a lot of facts about, say, Presidents or stamps, or bus routes, but these facts don’t seem to go anywhere.

So it is best for Nat to learn anything in a real world context, so that he doesn’t merely acquire static bits of facts that have no relevance to him, right? (This fact makes me wonder, of course, why discrete trial training is so popular. Nat’s current school uses it. In discrete trial, Nat is drilled in a certain skill, bit by bit, until he has internalized it. They then move onto the next, higher level of the skill. But if he is learning these skills in a classroom environment, how can they have meaning in their actual, real world environment? If this breakdown in the limbic system is truly the problem, then it would seem to me that going from one IEP goal to the next in a school day must make very little sense to Nat. Is he then perceiving the world as all broken up, whereby for the first fifteen minutes he is thinking about numbers, and then the next fifteen he goes to the computer and works on words and emailing? Sure, any kid does this hopping around in school, but any kid does not have the kind of challenges Nat has.)

So then if disparate skill learning is, indeed, a problem for Nat, why does he learn so well? If the prevailing theory is correct, then Nat would not be able to make sense of his world.

But he does. He does eventually link things together. His “eventually” takes a lot longer than mine but he does get it. But not all of the time. Sometimes it feels like he just has not generalized, especially when he is at home, because he doesn’t seem to understand cause and effect. He doesn’t seem to know, for example, that when he is hungry he can go get food. Or request it, but obviously for him verbal language is another hurdle. Yet at school and at The House, he seems more competent in this regard. So this proves that he hasn’t completely generalized, because he doesn’t also do it at home.

But today I had a new thought about this lack-of-generalization theory. I know he knows how to clip his nails completely independently. But when I asked him to do it, he adamantly refused. I went upstairs with him, took out the clippers, but he would not take them from me. He made me do all his nails, and I was fuming about how stubborn he is — damned Scorpios — so finally I made him clip just one, and of course he did it.

We could conclude that Nat has not generalized nail-clipping yet. Or, we could conclude that he is different at home. At home, Mommy does it. “Mommy will do it,” Nat says. Mommy does pretty much everything. He likes it that way. Who wouldn’t? He gets to be a prince here, while I do all the work!

I believe that it is not about generalizing, then. I think that there are other explanations. When he “can’t” do something, we should all be exploring other possibilities, like laziness, or teenage recalcitrance. Why not? Is it preferable to attribute lack of ability to lack of ability? I think, actually, it is preferable to attribute the behavior to wanting Mommy to do it, because that is comforting.

Who’s to say I’m wrong? And now I wonder, how many other autism theories are actually only theories (remember the one about how autistics don’t like hugs? or can’t love back? Hah!). I truly believe that the theorists need to ask the Mommies sometimes.

Thursday, June 4, 2009

Reason Is Something You Feel In Your Belly

The reasons — the reasons that we’re here… –Earth, Wind, and Fire

When people would say to me, “Things happen for a reason,” I used to nod politely but I would feel annoyed. What’s the reason? Who decided that I needed this thing to happen?

I’d think that, and then deep down, another part of me would knock knock on the hard walls of my brain and say, “You know you believe it.”

So let’s say things happen for a reason. Maybe I like to think it because it comforts me. It makes my life have a kind of meaning. Funny to call it “reason,” because it really has nothing to do with reason. Things happen kind of organically, taking an unpredictable path. Things happen by feel, really. But then you realize that they are connected! We make sense intellectually about something we feel intuitively.

Nat, Max, Ben. Why were they born to me? Totally random, eh? Yes, but — ? Why was I born to them? I feel like they form a complete Boy Unit, for me. They are each so different, that I get a different and satisfying experience with each one. But that is so egotistical, to believe that they were assigned to me to teach them, to make me happy. Because the thing is, I learned from them. I learned how to be a mother, how to think for others, protect them, put myself aside (at times) for their sake. They told me when I had to do that, and I had to listen.

Things are never what you think they’ll be. I was wondering what exactly led me to the Baby Bellies, to come up with the idea that I could teach? And teach bellydance, yet! To little girls. Chutzpah! Hubris! But somehow, it worked out. And yesterday, I tasted the fruit of my labor: they had a stellar performance.

This was a different recital from our usual. It was not a group number. Each one choreographed a bit of the song “Habibi Ya Einy,” sung by Nourhanne. They stopped at a certain, undefined point, but I could tell when each one was done. It was, of course, symbiotic. We just felt it.

I would announce each act, with the curtains drawn, and then the curtains would open as the music swelled, and either the girl would come dancing in, or she’d already be there, center stage, when the curtains parted. There were about fifty people in the audience: all the parents, some grandparents, some curious girls, and a classroom of Extended Day kids. [In this picture, they are taking their bows, all together on the stage.]

There were five acts in all: Hannah en pointe; Elize spinning; Eva and Kaisa as the Ocean Goddesses [the name changed yet again!]; and Julia and Sophie doing their original dance step where they begin as two bumps under a set of veils. Also, Kaisa decided to improvise at the end! I could not believe it. They are all so talented, and I’m not just saying that. They really learned! I really can teach!

My point, however, is that depression led me to look for a way out; this led me to bellydance; bellydance led to a whole new way of thinking for me, a new way of looking at my body, movement, music, creativity, and being one with — something.

This led me to teach, so that others could feel the way I do. I ended up learning from them, to feel the way they do. I learned all about playing, about just giving yourself over to whatever comes into your head at the moment. Dress up the stuffed dogs in hip scarves. Wrap yourselves in veils and become a bride. Change the name of “the camel” undulation to “the Figs” because your stomach looks like Figs the dog’s curved stomach. Laugh when your teacher does a shimmy, because her butt shakes! It’s all in the day in a life of the second grade girl.

I moved to a new level of being one with–, from them. Playing is exactly how you do that. You forget YourSelf and you just plunge into It. I sound corny, saying, “Children teach us as much as we teach them.” Well, I’m not saying that. I’m saying they teach us much more.

Tuesday, June 2, 2009

A Good Person

I just wanted to take a moment to honor someone from my family’s life who just died. This was Yelva Person, my father’s secretary for 10 years, but who remained a fixture in our family for decades. My dad was a principal at a high school in Fairfield, Connecticut, for years and years, and Mrs. Person (the unusual name is Scandinavian) served as that all important school fixture: the gatekeeper of the office. We all know a formidable secretary from our school. They are often tough as nails but soft on the inside.

Mrs. Person was an exception: gracious and kind on the outside and on the inside, but equally effective as the usual school office Cerberus. She was always smiling. She baked my family cookies every Christmas, my first experience with real Christmas cookies, a treat I have never been able to adequately recreate. We visited her daughter on our first trip Out West, when I was seven, and I remember it was fun. Mr. and Mrs. Person came to my wedding. They were just part of the family, that’s all there was to it.

Another thing about Mrs. Person is that she kind of symbolized for me the years in my childhood when we were this very strong, self-sufficient unit of four: Dad, Mom, Laura, me. Everything and everyone had their place in my universe. Dad was the king, no question. He was also the king at his school, I believed, and I think he was a beloved one. I felt like such a big shot, a little girl of 6 or 10, striding into Dad’s school and playing in his office. Mrs. Person had fluffy little school mascot toys that I played with. I know she spoiled me when I visited. I felt like royalty there. I was so proud of my dad, in awe and in love. Mrs. Person is one big piece of that picture.

Yelva and Eric were married for 66 years. My dad told me that she died just as she lived, sweetly and softly, holding Eric’s hand. I just want to say goodbye to Mrs. Person, you really were quite a remarkable person.