Susan's Blog

Wednesday, December 10, 2008

What Is To Be Done?

The House called today to tell me that Nat was sick last night! He stayed home all day. I wondered about coming to get him. Ned said that Nat would probably not be comfortable riding around, plus with the rain and all. And of course that’s not how it’s done. The House is supposed to be his home now. They’ll take care of him. They gave him some soup and some ginger ale.

That is kind of what I’d do. Plus a lot of hovering and feeling his forehead to judge fever intensity. Asking him, “Sweet Guy, you okay? How do you feel?” Kisses all around.

I’ve been thinking a lot about this whole thing, as you know. I think one of the problems here is that I have not committed to the idea. In my heart, I don’t want him to be there. I don’t want this to have to be the better choice, thinking of his future. And the reason I thought this was for his future was that a) I thought the House would give him a fuller life, with other kids around playing games going out to events; b) important independent living skills, like cooking, doing the food shopping, doing his own laundry; c) the experience of depending on people other than us, because he must learn how to communicate his needs to people who do not intuit them the way we do here; d) to get him on the radar screen for State services; e) relief for our family in terms of stressful encounters with aggression, screaming, etc. Presumably he would feel relief in this way as well because the House is more structured; he has more of a schedule to his day, and he operates smoothly with schedules, unlike the way I am impulsive and impetuous.

And yet, I could counter every single one of those pro’s with con’s. A) as for a fuller life, his interactions with the other kids may be fairly limited because communication is difficult for all of them. I guess he enjoys puzzles and games like Connect 4 but — when he plays those with me he seems spacey and disengaged. If he is spacey during a game of Connect 4, would the House staff still “count” that as “playing,” and report to me that he played Connect 4 with a peer? B) Important Daily Living Skills… well, he was learning those here, too. I was doing laundry with him. Sure, we did not get to the level he’s on now (folding beautifully), but we were getting there. Food shopping: again, he would go willingly but I did not know how to get him to figure out where things were. I think the House staff is doing that with him… C) Depending on others. Well — I don’t know if he knows how to get the affection he needs from Others. I don’t know if he’s formed any attachments to the others in the House. The staff are not allowed to mention other kids’ names to me, so I don’t know who he chooses to play with. I don’t know which staff he does better with, because the assumption at his school is that all staff are trained the same, and therefore, there is no difference in interaction. I have always felt this was bullshit. (Why did no one call me last night when he was sick? Why did I get a call at 2 pm, rather than in the morning?) D) State services. The fucking State. The lack of resources. The need for families like yours and mine to actually compete for the funding, the housing, the personal care attendants, the jobs.

But — here’s what I’ve been thinking. Why does Nat have to live somewhere else, even the rest of his life? Why can’t he live here or nearby in an apartment with a live-in personal care attendant and a friend? Oh, sure, monitoring PCA’s is a lot of work, and hiring good people is difficult, but — how much control do I have over who is hired in the Housing where he’ll live?

Why can’t we have respite just by having a PCA? Someone who would take him to work, where he would have a job coach? Or to a continuing education program? Is Housing the answer to everything? I want to work on a solution that makes me happier. I don’t want to have to be dependent on others. And if I do, isn’t it better that they be under my own roof?

…E) Stress on the family. Now there’s the rub. I can’t say what I’m feeling here. I just hate what I’m feeling here in terms of the wellbeing of the entire family, the need for the other children in my family to be free of fear, injury, to have my full undivided attention, etc…

But Nat needs me, too. And I need him! The main way we communicate (in the past and when he’s here) is through simply being together, feeling each other’s presence. Sometimes I kiss his cheek. Sometimes we cook together.

Talking on the phone is the primary mode now. It is distinctly dissatisfying. Talking is not Nat’s thing, it just is not. So the conversations are a bit rote. He is certainly listening, but I don’t know how he’s feeling because I can’t see his face, or check in with him just by looking at him.

I guess the concern is also about when we are too old — then what? I can’t designate Nat’s care to his brothers. Maybe, but — can’t say more about that, either. Can I not think about that one just yet? Isn’t it enough for me to plan for the next 5 -10 years? How do I even know what Nat will be like in 20 years? If I see how he’s changed (Improved) in the last six years, it is awesome. Even the last two years. So …

I guess the thing is to somehow have enough money to have choices? Or you have to be very clever with agencies that are out there? But can’t I worry about that even in 5 years? Will he be so deprived of funding, simply because we chose to keep him home with us while he attends school?

I have been saying to Ned for so long that I want to make an apartment out of the basement (which is actually completely above ground, with big windows, and has enough space for a small bedroom and a living space, a pantry kitchen (the Silence of the Lambs room in the back), and there already is a very primitive bathroom (primitive is a euphemism; this house is 130 years old). If we had an apartment there, it could be like a “halfway house,” a kind of compromise for Nat’s independence. We could probably fit a live-in person down there in the living space (a couple of luxury sofas, dining table, something like that) along with Nat, who could assist him in independent living and get him to work, or wherever. But he would still be around a lot more.

Ned has resisted this, not only because of the money, but because he doesn’t see the point. “Why not just have him live in his room?” he asks. But that would be too much living here. That would seem dead-end-ish. More of the same. But if he had his own space to keep clean, an in-law apartment, with cabinets to stock, meals to cook, wouldn’t that be more of a realistic adult scenario?

And it would not be forever. It would be for the remainder of his school years. It would give family members the space they need, but it would keep him near me. And once he seems more ready, we could rent him an apartment with a friend and a live-in, sharing the live-in between the two of them. Again, we could come and go as we please and he could be nearer to us. Maybe he could work in town, at the library or something like that. I’d have a lot of legwork to do, but — couldn’t I manage that?!

This dilemma of mine reminds me of so many of his school years where I fantasized about homeschooling him. How I wanted to be able to do that! To give him the best of care: mine. But Ned always felt that I was not cut out to be that kind of manager. Maybe he was right. I have felt happy about his education, especially where he’s been for the past seven years.

But this housing thing. I feel too unsure about it, too often. I feel I need more control over his life. I feel that there must be a halfway point, between living here all the time and languishing, and living there and — well, I don’t know. Sometimes it feels like it’s not what I expected it to be. Is this about getting used to things? But why should I
have to do that? I’ve always solved Nat’s problems myself. For better or worse.

Tuesday, December 9, 2008

Call the Po-Lice

Shoot. One of the Baby Bellies today said she “might” have lice. I did not let her trade veils today (which they always always do). She was so subdued, poor thing. She is usually just a total bubble of a person, a firecracker, a butterfly. I don’t know if she was worried or if she picked up on my worry? I’ve always dreaded the lice thing, though so far, none of the boys has had it, knock wood.

She must not have been too disheartened by it because she did keep interrupting me as usual to say things like, “Let’s be like Cinderella and…” or “Can we wear lipstick to the show?” I tried not to get too crabby (like, I didn’t say, “How ’bout we wear fat little white parasitic insects on our heads?”) It is like herding cats with the BBs, and next week is our show. A lot of pressure. I even talked to our local newspaper, The Brookline Tab, for coverage, but of course it is not pressing news (probably there will be someone in Brookline who thinks there is an ugly sign somewhere in town, or who thinks the Town should not collect our trash, or some other Very Important Grown Up News Item, so no wonder kindergartners – second graders learning Middle Eastern dance in the schools would be a lesser priority).

Maybe we’d get in the paper if all ten of them caught lice from the veils?

Anyway, I panicked at first when I got home and dumped all the veils into a cold wash (cold because they’re delicate). Now I don’t know what to do and I’m a little nervous about the whole thing. I hope my veils are not ruined, but they are kind of cheap anyway. But this is not going to level me. Some people use lice as a license to ostracize or panic, but I will not.

Regardless, the show will go on, even if we have to use paper towel for our veils.

Baby Bellies Choreography

Choreography for Baby Bellies Recital, Tuesday, 12/16, 3 pm. Auditorium


String Intro: Turn veils around oneself in the “wind” pattern.
Drums come in: Hip slide right left. Hip slide right left.
Violins come back: Big hip circle

Saidi Rhythm: Hip lifts in place
Clarinet: Snake arms holding veil (4 each), jump 1/4 turn right. Repeat until you have completed a circle.

Fast strings: Shimmies and hip bumps, 2 to each side

Airy flute: 2 complete Flat Hip Figure 8’s (hip movement parallel to floor) while folding veil.
Flute and drums: With veil folded into the “pocket,” camel (full body wave and walk) your way towards the center of the circle, then out.

Sharp drum: lift veil high over head

Fast strings: grapevine to left in a circle, one way, then the other way, two times each with veil aloft behind you

4 staccato beats: hip bump
4 staccato beats: hip bump
2 beats: hip bump
2 beats: hip bump

Fast strings: shoulder rolls, end with 3 head rolls.

Monday, December 8, 2008

A Respite

We went as a family of four to New York for the weekend, building a trip around Ned’s grandmother’s memorial service. I have not put in photos of Grandma O’s service. Instead I have made a Tabblo of our time on a small vacation as just four of us. I had a good time, as you can see, but I did feel that Nat really should have come. There was no reason to leave him at the House. Originally we did that so that he could still go to Social Group Friday night (when we had to leave for NYC), but there was some kind of screw-up and he did not end up going to Social Group!! 🙁

I have been having a very rough time with my grief. I write post after post and I do not publish them for some reason. I just can’t at this time. Suffice it to say that this move-out of Nat’s feels like an amputation. I am talking to Ned about what to do about this, what we might be able to adjust so that it would not feel as raw to me.

Anyway, here are pictures of our weekend, the high points of just walking around, Tribeca to Uptown, eating and observing with (most of) my darlings.

Tabblo: NYC with the boys

Sunday, December 7, 2008

On Grief

These days remind me a bit of 1993, when I was dealing with Nat’s diagnosis. Nat was just three, and Max was almost one, and I had a job to do raising my little boys, but — . I had to learn all about autism, in a time when there was not much around to tell you. There were no yahoo groups, no blogs, no Internet supports or info. There were very few books, most people still thought autism was a rare occurrence, and most important of all: there was no one else in my life (apparently) who had it or whose kid had it.

I’m functioning but there’s also a part of me that’s loose and unsettled, unresolved. I worry so much about Nat. I worry that he’s sad. I worry that he doesn’t understand why he’s there, but that the aggression lately is because he is beginning to realize what it is. Does he think I’ve abandoned him?

Back then I had a sheaf of papers from the Autism Support Center in Danvers, which I had found in the phone book, by calling (of all things) 1-800-1Autism or something like that. The papers talked about how autism was a neurological condition, probably genetic, not my fault, and how it came in many different forms, but mostly was all about having some of three groups of issues. The papers also talked about how education would help, and what groups were in my area to offer support.

The best thing in years was going to that local ARC support group in Brighton, Mass., where I met parents of kids of all ages, and learned that Nat was not alone.

So now, the thing is, I know he’s not alone, and yet, I feel so sad for him living away from me, from his beloved house, his pale green bedroom, his sunny bay window, his bright-colored paper dragon that Mom brought him from China, the large oil painting that his first tutor had done of him, sucking his thumb (of course) and holding Floppy Bunny. His lunchbox, his afterschool snack.

My boys are growing up and right now it hurts hurts hurts.

I don’t have a group to go to. Maybe I do but I don’t want to. I don’t get much solace in groups, or other blogs, or books on autism. Ironic. But there it is. I am just in it, and that’s all. There’s not much to learn, there’s only to do.

I feel so bad about how I didn’t prepare him adequately for leaving. I did not even prepare myself adequately. I couldn’t have known what this would be like. I imagined it all very pragmatically, the way the House would be able to train him in this or that skill. The way he’d come home whenever I wanted him to. The way we would have less stress in our lives, yes, that is true, too. I would cry about this now but I am exhausted at the moment. I’m sick of crying, I’m sick of going to bed early and I’m sick of grief.

Everytime I write what it is that makes me so sad, I feel empty and like I wrote the wrong thing. This sadness I feel around Nat is a moving target, ever-shifting, and non-specific. This tells me that it is grief, pure and harsh. Ugly and complicated. Inevitable and inexorable.

He is 19 but he also seems much younger. I don’t know for sure what he understands, how he feels. He sounds sad on the phone. They tell me he’s not. I don’t know, I don’t know. It’s that I don’t know for sure, never have. I did not really get the chance to know, and now he’s moved out.

Not Swallowing My Wallowing

This is grief, this is what it looks like and feels like. I was okay for September and October, and then I got distracted in November, and then, when I pulled away from distractions, It faced me square in the face. I had delayed my pain by lighthearted distraction and now, here it is.

Some of you will think that I’m wallowing. Well, think it. But I don’t want to hear it. That won’t help.

Some of you will tell me that this is a natural phase of life. That at 18 kids leave home. That Nat may have wanted to leave, hence the aggression.

Don’t tell me that anymore, I don’t want to hear it.

Truthfully, it is going to be hard for anyone to tell me anything. This is as bad as 1993, the diagnosis year. This is the Letting Go year. It is more like ripping out.

Nat may be 19, but he is also not 19. I don’t know for sure what his inner life is, but I do know that he is living somewhere else other than my home, and I always swore I would never ever send him away and I did.

Not only that, I sent him away without preparing him right. He had a social story, but he did not have enough time to really memorize it, for it to sink in. Because if he had, he would have probably become anxious. I didn’t want him to become anxious. I didn’t want that for him, but I also didn’t want that for me. I could not bear another phase of fear, and worry about unpredictable rage. Arm-biting, screaming. Being stuck in our house.

I can’t talk or write this away, but I feel compelled to get it out anyway.

I have just had a weekend away with Ned, Max and Ben. We were in New York just rambling around. We floated from thing to thing. It was easy, so easy. It was too easy. I felt Nat, I kept thinking about Nat. We are five, not four! We are kind of pretending to be four.

But I also had fun! I did not always think of Nat! I had so much fun.
And the other two need to have this kind of lovely time. Why does it have to be this way?

What the hell kind of life is it that children are born to us and we cannot help them? Is it really just all random, the way Ned and Max believe? What about what I believe? I believe in God. I believe that life is wonderful, sweet, colorful, musical. What about the five senses? And delphiniums? And Beethoven, Eric Clapton, and Natacha Atlas? What about M&Ms;, or getting well again after a sickness. What about making love? The first time you see your baby?

He is my baby. He is a man, but he is mine and he is not ready to go. I am not ready for him to go, I am not ready to be this old. But I feel like this is the better of two choices. In this world, you have to set up your child as best you can for the future. Even for the present, or because you know how the past went.

When you let go, to me it feels like abandonment. So I am grieving for that.

Thursday, December 4, 2008

Going Under

I don’t know how others bear
The pressure of a breaking heart
The way it was soft full and ready
It was so big
You think it can hold it all
But it can’t.
It breaks. It turns into shards
That float in your blood
like oil on the sea, killing
Only a matter of time
Before you drown in it. Or others do.
Charybdis roars and whips
Centrifugal, Centrifutile
And he’s already gone
A riptide of time and nerve cells
That clumped and didn’t branch
A limp limbic that could not swim
I stand on the shore
Not supposed to go in
Hope that there’s a boat
Or even a kindly whale
Maybe Gepetto’s inside
He’d like that.

Monday, December 1, 2008

Born to No

Here is a poem sent by a friend of mine, which he wrote during a long flight somewhere. Tim does not have a special needs kid of his own but you could say that he actually has millions of them. I’m publishing it here, with his permission, because I think he really gets it.

Born to No

Mystery rush in
I want to catch some
As I sit in the bleacher near a rough sod track
And the lanes
Divide the field into narrow lines telling each runner, “Stay in.”

I sit
Not alone but not a part of the mothers and fathers and
Bored brothers

and sisters waiting for their turn To cheer sister special

There she is now,
Making her way to the starting line
12 years old and not made for glory
Born into tears
“No Ma’am. The Baby is not all right.”

Born into struggle
No walking at 1
No talking at 2
No playdate at 3
No school at 4

“No Ma’am. Not here”
Born to no.

And when she runs, she runs fast and away

So now her race; her lines ahead, her place to fit in
Between 100
meters of start and finish
In her moment to run.

The gun fires and she runs
Sister, daughter, child of mystery, running, head high, eyes wide,
arms swinging, wild.
“Run sister. O Good Lord. O Good Lord.
My child, my precious child of my body. Run baby run.”

And finish-I know not how or what number-she did
And she raised her
arms, her limbs like crooked trees arching toward their sun
Spreadingtriumph with every sweatdrop

She’s looking at me. Smiling.
And I am surrounded by her posse of yes.

She is our mystery of yes.
Nothing less.

And there is nothing more.

–Tim Shriver

« Newer Posts