Susan's Blog

Wednesday, September 6, 2017

Thoughts on Facilitated Communication, “FC”

Ned came with us (Nat and me) to our second Facilitated Communication session today. Although I have some doubts about what it all means, if there is even 10% of Nat’s “real” thoughts in what he typed, then I can’t even… I can’t bear having waited this long to try it. All day my heart’s been hurting, but it is pain that is a complicated mixture of every color, every temperature.

You have to see it to believe it. And even then you might not. But I am not saying I don’t. I went in with an open but highly focused, discerning mindset. The way it’s done is that the individual types either free thoughts or from picture prompts or conversational questions. He types with his one finger, whichever hand is his most functional. The facilitator holds on under his wrist as support to keep his hand straight and strong and full of intent. As sessions and capability with typing progress, the facilitator uses less and less support, ending with perhaps a hand at the shoulder, or none at all. So there are fading-out goals. There is not much research but there is a study being conducted by Mass General Lurie Center at this time.
The fact that the facilitator pulls the individual’s hand away rather than guiding it, and the individual must move his pointer finger forward with strong intent — makes it easier to believe.  The pulling-away kind of “forces” intent in the individual, and also gives him time to be sure of the letter he is going for. It is a way of interrupting rote responses, impulsive typing. It’s all done on an iPad, there’s no prompting from the facilitator.  Just stuff like reading his typed sentence out loud and saying, “I’m not sure what that means, can you say more?” or “Oh, wow!” And so forth.
Some questions they asked were open-ended, some of the typing was with pictures as prompts. I’m guessing that facilitators structure sessions differently depending on your level of facility with typing and speaking — Nat is fairly good at typing with one finger, and he can speak, though not on a very sophisticated level, so they use open-ended questions and pictures for him to type from. 
Some of what he typed seemed like thoughts that might be “over his head.” But other times it seemed like it could be Nat’s unique syntax. The best part was when there was a pic of the golden gate bridge and he typed that it was going to Boston and 93. He is very very into route I 93.  The most emotional part for me was when he typed something about “dad in area first time,” and “possibilities to fail. dad” also “the brain in my head is just intelligent.” He did not type about his dad at all the first session. But he did type about me. Those words made me skeptical, however; they were something like “from birth until death Mom’s got your back.” 
But who knows what he has absorbed through years and years of listening and listening?
The point I conclude with is, that at very worst, FC is guiding him to create sentences by typing, which is not a bad thing. In other words, worst case scenario, FC is a start in modeling conversation and self-expression.  At very best, he is being given a new kind of support and touch that stimulates communication because it is via a new mode (not just oral questions and answers).
Nat’s (possible) success all makes sense to me in a way because he originally learned to read through spelling, through putting together letters that spelled words (the game “Spell-A-Puzzle”):
I watched him for the entire session, and I could see his pupils constantly on the keyboard, not wandering or spacing out. At one point the facilitator had me hold her hand which was holding his and I could feel his hand pulling us forward and her hand pulling us back. But sometimes it felt like she was pulling us forward — but that is also perhaps because he was pulling us both and it is hard to differentiate who is pulling whom.
Why am I/are we so skeptical? What’s the harm in believing? Is it the cost, the hassle in getting there?
The fear of getting our hopes up too much? That’s a big one. Remember Secretin?
But if this is something he wants/needs, I *have* to do it some more.
Christ, if this is real, then… mind blown, heart blown.
Afterwards, in the car ride back to his Day Program, we would make eye contact and there was an openness there. A vulnerability? If I were to really let my imagination run, I would say he was kind of saying “see?” to me. Lower case. Because even he had a hard time believing it.
And so:  we’re going back.
Sunday, August 6, 2017

But is it okay?

Every time I drop Nat off at his group home my body goes on extra alert — trying to sniff out anything untoward or bad or depressing or neglectful or dirty. I never find it in this place. Okay, the television is always on. But ain’t that America? You choose the technology to sink your face into all depending on your age, your culture, your social class, your preferences. So eggheads like Ned and I are always facing open laptops. Millennials like Ben and Max are always on that phone. Slightly older people I notice have iPads so they can read with huge letters. And group home staff often have televisions on. Ain’t no crime.

So I stand there and I feel and feel and feel — the air around me, the sense of things, and open my eyes extra wide. Nothing. It is safe.

And Nat is willing to go and stay there. He does whatever we want, whatever we need. And we, on the other hand, try to give him pleasing variety. We break up the weekend usually with Nat being here one or two of the weekend nights. We work it out with him: “You want to come home after breakfast, or before? Go back for dinner there?” We give him choices. We write it in with him, on the weekly calendars that settle on surfaces throughout our downstairs like leaves. I almost never recycle Nat’s calendars because sometimes he likes to study them even if they are over.

So we settle on his schedule and we bring him back. He runs upstairs, comes back down, sits on one of the couches. I bend towards him to kiss him goodbye and we exchange a glance. I think that I see in his eyes something — not sadness, but not happiness — but I don’t know, do I? Not wariness, either, thank God. But not peace. What I read there is that he is willing to go back but what if he’d rather stay with us?

I feel — or fear — that he’d prefer to live with us, and just go out during the day to his program where he volunteers all around greater Boston or takes hikes or goes to museums or bowling or kayaking. I have no doubts about his day. Neither does he. And while he loves it when I pick him up from there on Fridays, he is okay with going to the group home, too. Maybe more than okay. If he didn’t like it, he’d tell me. Right?

As long as he comes here at some point on the weekend. So — is it okay, what we do? What if he would prefer to live with us? Should he?

He thinks he’d prefer it. But would he? I think sometimes he’s bored out of his gourd here. Here there is very little routine, other than meals. The structured activities are few and far between. I ride my bike in the morning and he comes with me. I drop him off after a three-mile loop and then I continue on my own for another hour. He seems okay with that. I don’t think he’d do well going with me everywhere else for another twelve miles because there’s too much noodling, no definite plan. I don’t know.

He goes from couch to porch to playroom to his bed and back again. He refuses books, movies, music. He wants snacks, walks, friends. We can’t give him that all the time or even a lot of the time. He waits in the kitchen, silently telling me he wants a snack, or needs his meds. But at his group home, there are a lot of activities, and they also say he initiates a lot. They have late afternoon activities — the Y, bowling, shopping — and then dinner, then showers, then bed. Thursdays he goes to music. Different guys go out with him, and different staff. Variety and schedules, dependability. Kind people. Lively roommates who notice him.

Ned and I think the group home is great. But I wonder if Nat believes he’d rather be with us, boredom and all. So am I supposed to take him home? Or am I supposed to be helping him live with others which is the natural way of things? Eventually he will have to live with others. There won’t be anyone to take care of him once we’re gone, other than the group home. That’s a reality. And if he lives with us for decades more, how will he feel moving out when the time comes, and he’s 60? But am I supposed to think that far ahead?

Is it right that I feel relief, too, when I walk out of the group home and then feel excited about being alone with Ned? I know I’m supposed to have a life of my own, and I do. But is that fair to Nat, if he’d prefer living with us?

And what if it’s just kind of an anemic wanting? What if he’s okay enough with staying there?

A friend of ours sees this all black and white. His son is in a group home. He fought to get him in there. He says, “Hey, he’s got it good! He’s got a roof over his head, people to take care of his every need, things to do. That’s better than most people on this Earth.” I love this friend’s certainty, it’s like a cold glass of water on a parched day.

But then I’m back to just me and my wiggly certainty, my fears. My deep muscular love for Nat, for my boys, where I want everything good for them. And even when something is pretty darn good, I worry: is it good enough?

Tuesday, July 25, 2017

Playing for Real

There are aspects to taking vacations with Nat that are unchanging. Because of his chronic anxiety there is always the need to think ahead and to plan so that he won’t be upset. There is always the spectre of his getting upset in the worst possible places like the beach or restaurant, or a store. Even when he’s not upset he’s very pronounced in his actions, his activity; he invites staring. Yes, it’s wrong for people to stare but they do. So for all of his life that’s one of the biggest things that has not changed: my discomfort of being with Nat in public.

My discomfort does not overshadow my joy in him, however. For the most part I feel great pride when I’m with him in public because he does not act out, and he really keeps himself together. Even when he’s doing his stimmy stuff he is so gorgeously outre, so vehemently himself, that I just feel so much love and admiration — along with a deep burning sense of outrage that the public does not. Plus I understand that the stims have a real purpose:  he is trying to organize himself, he’s trying to be comfortable in a world that greatly overstimulates and confuses him. His stims make him feel good, so they are good. I wish everyone else would understand that, but I think that if we just keep on taking him out there and making people familiar with what he does, maybe someday stimming will be much more widely accepted.

Certainly the worst part of being on vacation with Nat is how uncomfortable he is because of the necessary lack of routine. At some point, probably 10 years ago when he first started to live in group homes, we decided to have Nat stay with us on vacation for shorter periods of time than the rest of us. This is one of those terrible choices that we had to make and we still have to make in order to have a good time on vacation and please everyone — including Nat. This is not ideal but it’s the best I can do — don’t fucking judge me. This time, when he went back he seemed confused that we weren’t going back too. He took out our suitcase and wanted us to pack our clothes. He got more and more upset, hitting his head, talking loudly. I tried to get him to talk — so did Ned — but it’s hard for Nat at these moments. I felt really bad that I hadn’t given him the choice to stay the whole week. But it was too late to change the plan — we didn’t have enough meds for the whole week. And — ugly honesty —  I needed a break from the sheer effort of keeping Nat happy on a vacation.

We talked simply and to-the-point with him about what was happening, going over the rest of the week on his calendar. And he saw that the salient points were still the same: kayaking with day program tomorrow; Mom and Dad come get you Saturday.

I was/am so sad about having upset him and also giving him a shorter vacation. Eventually I told him that he gets too anxious on a full week of vacation and that it’s good that he has activities at his day program like kayaking which he’s going to do tomorrow. I said some people can’t do a long vacation. I tried hard to tell him the whole truth. I will try to figure out a better solution next time.

Even if I screwed up his departure, there are good things I did with Nat on vacation. I tried to figure out something that we can do together everyday that I consider quality time. On this vacation we rode bikes to my parents house on the cape and back everyday a six and a half mile ride that was really nice. However hard it is to ride with him on roads and to always be looking in my mirror to be sure that he’s okay I have this raging pride in the fact that he does so well on a bike. He goes as fast as he can but if I ask him to slow down he slows down he stops at stop signs if I do he knows the way I let him take the lead as often as I can. I want to yell out loud “this guy is autistic! Really disabled. BUT look and see what he does!!!! Can you, you staring judgemental asshole?”

Bike riding with Nat is a very conscious activity, where hyper-vigilance is required. Still, I can relax enough because I am confident in his ability to be safe. But there’s another kind of thing we do together which is the best, when we just fall into an activity. We just play. It happened when we went to Disney together. It happened when he was 12 and I was tired, and he was annoying, and we were on the couch together. On this vacation it happened when we worked on a jigsaw puzzle together. This is something he and I never do. And it was a significant size: a 300 piece one. That evening I found myself craving to do a puzzle. And without thinking too much about whether he’d say yes or know, without anticipating disappointment, I simply invited him to work on it with me. When I really want to do something with him I get strong and confident and he knows it and he wants to do it with me. He knew this with the biking and he knew this with the puzzle.

I don’t know what it is that I do that makes him aware of this and makes him feel like he can do it — yes I definitely feel like somehow confidence is a part of this a part of his communication challenges. His social reluctance feeds on his perception and his decoding difficulty, and vice versa. So if I feel confident in myself and in him he does too and then he wants to do the thing with me. Ah, but not always, and there’s the rub.
The beautiful things that I get to do with Nat are all the more special because they’re often surprises. I don’t realize at first just how strongly I want him with me. And I get surprised when he wants to.

But there we were picking up the pieces, turning them this way and that, trying to fit them in. Occasionally he would just look up and stare at me. Stare at me. I tried not to make a big deal of it. But I felt so flattered. I felt like I mattered to him. Stupid neurotypical me needs so much more feedback than I get with Nat. But that night, there it was. Was it as simple as I wanted him with me, no strings attached, and he then wanted to be with me? Oddly enough, the next day when I desperately tried to get it to happen again, he refused. All he wanted was to crumble the puzzle up.

So what made that night happen that way? Is it because neither of us overthought it? Is it just that we have to kind of sneak up on each other?

Monday, July 3, 2017

The Third of July

July 1 was my wedding anniversary. July 3 is an anniversary, too — but a terrible one. It’s been exactly a year since Nat came home with a big bruise on his chest and we then discovered he had fractured ribs. The state investigation yielded no clear findings, no evidence of abuse or neglect. We will likely never know what happened. And we have to grapple with the painful fact that Nat could not or did not tell us that he was in pain.

I had him come home last night for a special cookout because I knew he was going to be at his day program today and then at his group home for the Fourth. They are planning a cook-out with two other houses, so it sounded like it would be a pretty good celebration for him. We are not doing much of anything here, so I figured it was okay to have him be there on the holiday.

But family holidays should be family holidays. Even when the family doesn’t have a clue how to celebrate. Ned and I were going to go on a bike ride together today and Nat would probably enjoy it, but he is at his day program.

Driving in the car with him next to me, hearing the rise and fall of his self-talk, I felt the pain ball up tightly in my chest, but I told myself not to cry, not to show it. Not until I’d dropped him off at the day program. Why why why do I feel sad, I wondered. So sad, and yet he’s going to be having a nice enough day at the day program. And a cook-out tomorrow at the group home.

What makes him happy? I wondered this as I always always do. Looking around desperately for something that would connect us, I glanced at the radio and switched from NPR to Magic 106.7 — his favorite. I should always play it when he’s in the car but I can’t stand it. This selfishness I allow.

We were early at the day program and he said, “No early,” because he wanted to go in — either because he likes it or because it is the routine — (or both). So I decided we could spend a little time at a nearby farmstand with a muffin. He ordered it himself at the counter, the guy understood and did not make me corroborate what he thought Nat had said. One small victory. Nat ate the muffin in the front seat, coating his lap with a soft yellow layer of crumbs.

He was greeted by the assistant program director when it was time to go inside, and he walked in without looking back. I had to call him back so that I could get a Goodbye Kiss.

Is it okay to bring him to a carefully-manufactured adult life, and not keep him with me? On this most terrible anniversary, I cannot feel it is. I kept driving, though. Some part of me must feel that this is okay for him. He can’t live with me forever. Although he did for eight months last year after we discovered the injury.

The plan is for him to live very very close to me and be an intrinsic part of the family life while also building a life apart. He is doing that, but is it a happy life apart? The rolling cadences of his self-talk seem smooth but quiet. I suppose that’s good. Anxiety, for Nat, is clear and sharp as broken glass. So he’s not anxious, right?

But I can’t escape the press of sadness against my eyes, so at odds with the bright sun of the Almost Fourth.

It’s the Third of July, a date that now might always spill darkness over the Fourth’s majestic lit-up night skies.

Wednesday, May 3, 2017

A Return to the Institutions?

Today on WBUR.org, (Boston’s NPR station), I wrote about the potential devastation to access and community inclusion of guys like Nat (people with developmental and intellectual disabilities) if the current GOP healthcare plan should pass. You can read it here.

Thursday, April 27, 2017

Little Red Motherhood

Nature is red in tooth and claw. — Alfred, Lord Tennyson

Mothers are even more. — Me

Still not over it. Nope, so don’t expect that I’ll move on. Or rather, it has morphed into something else. Action. My grief over what happened to Nat — maybe it will always be with me because of the responsibility I bear. Because I failed to keep him safe. Twice. Yes, there was a quieter horror, lower down, in the shadows of an X-ray. There lurked the other, older healed broken rib.

No, it was not my fault, of course not. I would rather die than hurt Nat. Any of my sons. Take the bullet, no question.

We don’t know how it happened — violence or an accident that was then overlooked.

The other day I interviewed a psychologist who has made some inroads into treating trauma in people with communication disorders, people who cannot easily tell someone what happened to them. She was very insistent upon the likelihood that this will happen again. That the numbers of people with disabilities who are abused or traumatized are higher than the non-disabled population. The CDC backs this up indirectly — the research seems to be only about children with disabilities. But if you extrapolate — 1) the disability doesn’t go away, and 2) neither does some degree of vulnerability. Couple that with the low pay and lack of training for adult caregivers — as opposed to special education teachers — and you have a far worse situation.

Emotionally I’m back where I was when Nat was first diagnosed. I am at sea, nothing but my husband to hang onto. He’s a rock, an island of safety but he knows only the other half of what I know. Together we come up with some strategies of how to deal swimmingly with autism but it is in the end shit we made up. Our best idea was the Nat books (I also called them Crisis Stories). You would know them as social stories but I invented the Nat books before I even knew Nat was autistic. 1992. Carol Grey had only just invented hers, in 1990. Anyway, I sure didn’t know about them. That would have meant that I knew Nat had special needs, and I did not. Another failure. I did not stick up for myself, and consequently, for Nat. I knew something was going on with him but I did not push the doctor. Anyway I think the Nat books are better because there are actual photos cut up to fit Nat’s needs — not stick figures. (Stick figures are abstract; how would that work at all with my concrete thinker son?) And the sentences are simple but not insultingly so. They are written the way I talk to Nat. I wrote a Nat book about his traumatic event from July and he seemed to really be drawn to it. But then he took it with him to the group home and so now I don’t know what he does with it.

Surprisingly, I have not talked to Nat a whole lot about what happened to him. I am afraid to because I don’t know if that’s what he needs. But the other day I tried a new thing: I created a Nat book about rules he should follow. The rules are actually things like the right to not talk, the right to eat what he wants. The necessity to tell me, Dad, or anyone in his caregiving circle when and if he’s been hurt. Or if he’s sick. I spell out that no one may touch Nat on the penis or tush. I have to do it that way to be absolutely sure he knows what is what. No one may hurt Nat.

I also put in that Nat has the right to live where he wants. And ever since his injuries, he has made it clear that although he likes his group home, he would prefer to sleep and eat at our house. I take that very seriously.

Although — I have to add — that Ned is not convinced this is true. Ned thinks if we put things on the calendar he will prefer what’s on the calendar, whether it’s to sleep here or not. This may be true.

I am beyond relieved that he is happy living at his group home for some of the week. But I cannot just ignore the fact that he wants to be with us more than them. Anytime he’s given the choice of where to be, it’s our house. [Although like I said, this may only be because of how we offer the choice.] Nothing to do with the amazing manager there, the warm staff. The staff is frankly wonderful, on top of everything, they make and keep schedules, they smile, you know…

But I have decided that this is what must happen, someday, maybe soon:  My future will eventually be wrapped up with housing him, keeping him not far from my wing. Not keeping him in a bubble, but a nest right below my nest, same tree. In giving birth to my boys I did not realize that I was entering into an irrevocable contract. I was to nourish them, nurture them, educate them and help them grow up into wonderful capable adults. Then stand back and let them do it.

But if they cannot at some point, I will be there for them. And right now, Nat cannot do it. I now see that. He will always need my protection. And so he must have it. This is an axiom in my life, as true as I need to breathe oxygen and I have found my soulmate in Ned. The truth is that if my sons need me, then I will drop everything to help them. Right now, at this point in his development, Nat needs me, and needs to live at least part-time with me.

Ned and I are now looking into selling our glorious home and buying a two family with the downstairs apartment for Nat, a friend, and a caregiver. Tying up all our assets in that. Not a green golf course pied a terre in New York retirement.

Too fucking bad. This is my path. My children. This is how I feel I can keep him safer. It may not even have rational truth to it, but it is what I feel I have to do. It’s not a beautiful declaration of pure white love, it’s not some noble thing. It just is. A raw and heavy truth, with piercing claws. I’d have to rip my heart to get them out.

Nope, not a saint. Just a mother.

 

 

Thursday, March 9, 2017

Nat Is Okay

I have been having a very hard time managing my feelings about what happened to Nat in July. I think about whether he is happy or okay very often. I have nightmares. I talk about it too much. It’s because I feel that I didn’t protect him well enough and I don’t know how to move forward. But even more, I am so worried about how Nat has internalized all that happened to him. How does someone who has a communication challenge like his talk through and make sense of trauma?

So I went to see my old therapist. She had the idea that I make a Nat book for him, just like I did when he was a really little guy and needed help going to Thanksgiving at Aunt Rhoda’s. Give him a framework, the words, the images, to put the story right into perspective for him. About 15 Nat books later, and 25 years later, here is Nat Is Okay. I will try it out on him this weekend.


Nat Is Okay

Last summer Mommy saw that Nat had a big bruise on his chest. Nat did not tell Mommy what happened. But something had happened to Nat, either at ASA, Shaws, the van, or at Thornton Road.

They went to the hospital and the doctor said that Nat had broken ribs inside his chest. These are ribs inside the chest:

 

Mommy said that Nat could not go back to ASA or Thornton road because she wanted to keep him safe. Whatever had hurt Nat would never hurt him again.

It was not Nat’s fault that he got hurt. Nat is such a good person.

No one should ever hurt Nat. No one should hit Nat. People need to take care of Nat and keep him safe.

So Nat came home. He packed up his room at Thornton Road and he did not go back to ASA.

Nat went to Extreme Sports Camp in Colorado because Mommy wanted Nat to feel happy while his bruises healed. In Colorado, Nat rode a horse named Benji. He had a good time.

Sometimes Nat went with Drew and his social group to do fun things. Sometimes Nat went to Cape Cod. Sometimes Nat went out with Shannon.

In the summer Nat and Mommy visited Charles River Program to see if Nat felt happy there. At Charles River Nat could do Meals on Wheels, go bowling, go to the track, shop for cooking and other good activities. So Nat started going to Charles River on the van with Jackie and Carmen and JP.

Mommy and Daddy loved having Nat at the house. But Nat is grown up and grown ups have their own houses. So Mommy and Daddy looked around and found a nice home nearby.

Nat got ready to live in the new house. He moved his bed and dresser into the new room. He got a new van to take him to Charles River.

But sometimes Nat still feels sad about the time he was hurt, when his ribs were broken. Sometimes Nat feels angry about it, too.

It is okay to feel sad or angry about the time Nat was hurt. It is also hard to move to a new house. The new house is different from home. and Nat does not like when things are different. Nat likes the new house and Charles River, but sometimes people are late or things don’t happen and Nat gets angry.

Once at Buddy Dogs Nat was so angry that the police came and took him to the hospital to keep him safe. Nat did not like being angry or being taken away from Buddy Dogs.

One time Patrick bought Nat a Sprite at Dunkin Donuts and Nat liked the Sprite. But he didn’t like Patrick buying coffee, too. Nat got angry again. Nat hit Patrick but then Nat was sorry he did that.

Patrick is okay. Patrick still likes Nat.

It is okay for Nat to feel angry sometimes. Sometimes every person feels angry. But we have to try to stay calm.

It is okay for Nat to feel sad sometimes. Or scared or worried. But Nat, you should remember that everything will soon be okay. Mommy, Daddy, Makayla, Patrick, Shawna, Shilene, and Shahera want to make Nat happy. Nat should try to remember that we will all try hard to make Nat happy.

But if Nat is not happy, it is okay. Soon the sadness or anger or worry or scared feelings will go away. The sadness, anger, or scared feelings will go away.

When it starts to be spring and summer, Nat will start to feel better about the new house. Nat will start to feel better about the things that are different.

Nat will remember sometimes that he once got hurt but that he is okay now. He will not get hurt anymore. Nat will feel more and more happy. Nat is a good person and many people like him.

Tuesday, February 14, 2017

Go Ahead, Laugh in My Face

Sometime during the last year or so I discovered that Nat had started making this new face, where he drew his lips together almost like a kiss, and scowling a little, he’d tilt his head downward. When it first happened I was alarmed because — why did he feel he had to stop smiling or whatever he’d been doing? Had someone in his life been chiding him for laughing too much, being silly? This is where my mind goes, automatically looking for that hidden evil person in his life, who might be mistreating him and no one knowing about it. I have every right to go there, especially after this last summer when he came home with mysteriously fractured ribs. X-rays showed that this was not even the first time he’d had broken ribs.

I will never let go of that.

This gesture worried me, especially when he also would draw his arms straight down against his body. This made me think he was stiffening his body for no apparent reason. It looked so odd that we began to worry that he had catatonia. We took him to his neurologist, to a new psychopharm, and started him on new meds. I plunged into the world of autism catatonia, trying to learn at lightning speed about this terrible condition.

By now we know that he doesn’t have autism catatonia. We know that some of this pulling-inward was likely due to the pain of the first fractured rib. He’d also be very still, which makes sense if you consider he was likely in great pain.

This is all very confusing, I’m sure. Sometimes his stillness and stiff demeanor may have been about rib pain. But sometimes this gesture of pulling himself into seriousness is just that, he is trying to let you know that he is paying attention, he is riveted, focused.

Once his ribs healed, and I knew about this latter, newer possibility, I began noticing it in all sorts of situations. At his ISP, he’d lean forward, lips together, listening as hard as the worm in Dr. Seuss’s The Big Brag. OLYMPUS DIGITAL CAMERA

Another thing I discovered since he’d come home was that his hands, his palms, were as rough and knotty as bark.  I offered to rub hand cream into his hands, because of course he would never know to ask for it. Autism freezes his will, or something like that. But I don’t want to think about that now.

So I would rub Eucerin into his hands every night. I usually forgot until he was in bed. I’d say, “Nat you want some hand cream?” and he’d say, “Yes.” So I’d pump out a dollop and just rub it into his hands, in the dark. I’d do what manicurists do: pull each finger, rub the fat part of his palm.

Over the months that he was home, of course, his hands started to soften. And I noticed how eagerly he would agree to the hand massage when I remembered. I also noticed that he’d go very still and draw his lips together, as if trying to experience it with every sense he had.

I, too, would soften inside because he was allowing me to touch him, he was actually getting pleasure from my touch. That had not happened for a long, long time. As a baby he had reached for me, as a toddler he had wanted me to pick him up “I pick you up,” he’d say. But really so much of his “affection” as a grown up was just kind of letting people kiss him or hug him. He does not like hugs for the most part. Ned and I joke about getting “chinned” by him; he lets you hug him but shoves his chin sharply into your shoulder while you’re doing it.

But the hand cream is pure enjoyment; he’s not being polite, he’s melting. Last time I did it was just a few days ago. He was in the bathroom, getting ready for bed, and giggling to himself. I remembered the hand cream, and came upstairs to put it on him. As I started pressing it into his hands, he suddenly drew his mouth into his serious face, and impulsively I kissed him. While I was kissing him, he burst out laughing, totally into my face. It made me laugh, too. I kept my lips on his scratchy face and we just laughed onto each other’s cheeks.

How long does an autism mom wait for such moments? Completely unprompted, non-rote, natural evidence of affection. Because yes we do need it. Our hearts get roughened by the years of all the necessary effort, the putting-my-child-first, the letting-him-be-who-he-is. Autism parenting has grown such muscular mothering that we forget how much we crave a simple sign. And there it was, his startling, sudden joy in my presence, what we were experiencing together. A balm for my soul.

 

Wednesday, February 8, 2017

A Perfect Storm is Roiling Disabled Students

Here is my latest article in WBUR’s Cognoscenti Column, on the perfect storm of political nightmare roiling students with disabilities. Add to this icy mix Jeff Sessions who describes the ways in which IDEA and disabled students are burdens.

Wednesday, February 1, 2017

How Green Is My Natty

I’ve been here before. A fiery fissure breaking through my heart, Richter scale 6-8, the pain of saying goodbye to a son. This feeling is familiar territory with motherhood. But with autism there is an additional darkness in the chasm. My oldest, Nat, is 27 and autistic, and he is leaving today for a group home.

I spent the morning, and the day before at those home accessory stores, lost in a fog of pastel household goods and women, glassy-eyed like me, stroking carpets that hung like a row of furry tongues and other items they did not need. I was shopping for Nat’s new room: towels, bedside table, curtains. The only guidance I had from him was the word, “green,” in answer to my question of what color he wants in his room. And I was lucky to get this tiny chip of information, real information, from Nat in his otherwise barely intelligible symphony of sounds. I say symphony because his self-talk is so musical, rising and falling like a nursery rhyme, yet as complex as Beethoven’s Ninth.

In the store, I found myself looking at other colors, though. How would orange be? He likes his orange Gap shirt. Or yellow? He wears yellow tee shirts all sunny summer long. But does that mean that this room should have those colors? He said “green.” But still, there I was, wondering about the orange pillow, the splashy yellow dust ruffle. Always wanting to meet him where he is and pull him into more. Pull him to me. A la Greenspan/Floortime. Build that bridge, tote that barge. As if I am somehow the example of where he should be. I am so not.

I wandered the aisles thinking of Floortime, having thoughts like, “will they know him? why does he want to go, because he thinks he’s supposed to go, or because he wants to?” But mostly I felt like apologizing. Yeah, I’m really sorry for not being absolutely certain of what to do for you, Nat. I’m so fucking sorry that my body did not equip you with the easier, neurotypical DNA, those mainstream building blocks, that ladder to independence. You will always need others to watch out for you, and it can’t be me forever, and so I need to find others, I need to get you used to others. But Goddammit, there are others out there who are stupid or evil. Or indifferent. Lazy. I can’t imagine how they can be that way. I see red when I imagine a person not taking care of you right. HOW DARE THEY? You are a gift to them. You are utterly you, and yes, I’ll say it, you are pure. I’m not saying you are superhuman or an angel or any other such bullshit. You are special in that unlike Us, you are purely you, no guile, no artifice. Well, I know that the sign-song self-talk is an attempt to hide what is going on in your mind. Oh that is so dear. No, no, not patronizing you. I’m matronizing you, that’s different. When you vocalize, I listen with my deepest, quietest self. I heard “hooo-me” this morning and I knew it was “home.” Stretched-out words. You want to keep your thoughts private while expressing your feelings at the same time. You are infinitely clever. Who else could build what you have, with the tools you’ve been given?

Aside from this seven-month stint since July, Nat has not lived at home since 2008. This is a good thing. It was a good thing. He learned to live with others who do not love him or know him the way we do. He learned how to make his needs known, even with limited verbal ability. He acquired skills like food shopping, laundry, and other daily living activities. He developed beautifully.

But he also came home with mysteriously fractured ribs.  And though he did articulate a tantalizing few words explaining how it happened, we could not trust this for sure. The state investigation heard other such explanations from his disabled co-workers at his former day program, but deemed them “unreliable reporters.” Can you imagine being thought of that way? It chokes me, it feels like a kicked ass kind of rage. And yet that is how I sometimes think of Nat. I explain to doctors, “Well, he often answers just ‘yes’ by rote, because he either doesn’t know how to answer your question about his health, or he doesn’t want to talk, so ‘yes’ will get you off his back.”

So even when guys like Nat do express themselves in an effort to engage with us (the neurotypical world), they don’t really get very far.

And so, my dear, I will buy you green. All the green I can find. And I will hope that you will unfurl like the best of leaves, and find equally healthy growth in your new place.

 

 

 

 

 

Monday, January 2, 2017

One Giant Step for Natkind

We just had an interesting, positive moment. Some of you know that Nat — still living at home since July — has been exploding into rages almost daily when things go a little wrong/not his way. It passes, but it’s horrible: screaming, slapping his head hard, pleading loudly and sadly for what he wants. But he can’t always have what he wants — no one can. Things break. Too much chocolate makes you sick. Plans change.

Ned and I have been working together on this problem for weeks. We’ve been focusing on getting his meds right. But I realized yesterday that all of my strategizing and analysis has been obscured by my fear, my despair. Old feelings roll me back, pin me down in the past.

Yesterday I needed to talk about this dynamic and Ned was not able to. So I called my Dad and Mom. Dad listened, and eventually was able to organize the pieces of the problem, separating them out to medical and doctor issues; technique of response to the outburst; and putting aside my feelings of failure to help him. “Look, you worry about him, you are deeply, personally involved with him,” Dad said, “and that’s right, because you’re his mother. But you also need to be objective.” He might not have said precisely that, but that’s what I remember. “You need to have a plan,” he said, echoing his own father’s words. (Grandpa Irving Senator was well organized, fastidious, and always had a plan.) “You have to keep in mind,” he went on, “that this behavior is going to happen. It is a patch he’s going through, that he’s gone through before, and it means that he will explode from time to time. But you also need to remember that for most of the time, he’s a great guy. Sunny, sweet. So you have to go into it knowing that this will happen and you need to be ready with a plan.”

Together we thought back to the last time when Nat was like this. It was ten years ago, just before he moved into his school residence. At that time, the school implemented a time-out technique. They would have him go into a small room within the classroom and set the timer for one minute. If he could be calm for one minute, he could come out. If not, he went back in and the timer was reset.

I’m well aware that this may not be a legal technique anymore, and some judge it as inhumane. I disagree. When done with concern and care, the way Nat’s teachers did it, there is a space created for the person to decompress. In that space he can once again think and hear and communicate eventually. And so, Nat learned how to collect himself and then to articulate what he needed and to stay calm even when thwarted. All without harmful restraints. The time-out room eventually faded out and then the staff could direct Nat to sit at a table off to the side to collect himself, still using the timer.

We then had about ten years of Nat thriving in school, work, and with friends. He soared in his development and became the successful man he is today.

The behavior is back. Although we cannot know the larger underlying reasons — PTSD? Wanting not to live with parents? Something else altogether? — we do know the overall catalyst: loss of control. So our task, then, is to help him feel in control even if he cannot fix what goes wrong, or change things to go his way. Visuals! you may say. But Nat is more aural, and wants to hear and be heard. He’s not one to work with velcro boards or Meyer-Johnson stick figures, charts, or the other Behaviorist’s tools — at least not for this kind of problem. He loves calendars and schedules but the problem here is when Life goes counter to the calendar or schedule.

What else does Nat love? Repetition. I reasoned that if I repeat exactly what he is saying to me, he will feel validated. Then I can add in, slowly, my agenda. Maybe.

So today we were ready for the eruption. As soon as we saw it coming on, we put our plan into play. First, I pointed out that he was getting upset. Second, I reminded him that I was listening to him, and that his talking was helping. “Nat, let’s keep talking about it. I’m listening. You said, ‘short walk to JP Licks.’ But Dad wants a long walk.”

“No long walk! Walk to JP Licks up Harvard Street!”

So Ned said, “How about walk to JP Licks up Harvard Street and then take a long walk back home?”

Nat: “Walk to JP Licks up Harvard Street and then walk home down Harvard Street.” Ned and I almost smiled at this point because Nat was making it very clear what (short) route he wanted to take. But then Nat started tapping his head, beginning to get worked up.

“Nat,” I said, “let’s talk about it. I see that you want to walk up Harvard Street to JP Licks and then walk back down Harvard St.”

“Yes.”

Ned said, “Okay, Nat how about we walk up Harvard Street to JP Licks and then walk back down Harvard St. and then walk some more.” (This way Ned was echoing Nat and then altering the plan a little bit to get a longer walk without sparking Nat’s panic by using the trigger words “long walk.”)

“Okay,” said Nat.

“Okay,” we said. Ned repeated the plan again. “Okay,” said Nat.

“Okay, great!” said Ned. “Nat, you see what happened? We kept talking, you kept telling us calmly what you wanted and we were able to understand!”

“Yay Nat,” I said, and Ned and I applauded him. Instantly Nat was grinning and laughing.

Off they went. Perhaps it is true that one long journey begins with — a walk up Harvard Street to JP Licks and then a walk down Harvard Street…

Friday, November 4, 2016

Will o’ the Wisp

Didn’t I always know/
that you were, as Grandma said/
a will o’ the wisp?
The feathery smile that broke/
the worry/
and my heart/
brought me to my knees.
love didn’t feel like love, it was more/
like pain and fear. Bizarre.
My upside down baby/
I had to learn everything. backwards.
Let you go you let go/
You is Me/
Left home for Home and Harm/
The protection around your heart/
(which was supposed to be me)/
was not enough. I was not enough.
He’s fine, they say/
Move on, they say/
Let go, they say/
But I will not, will o’ the wisp. Because I always knew.

Thursday, November 3, 2016

It Can Happen Here

In Nazi Germany, the disabled were among the first to go. Here in America, we had our own brand of “rounding up” and interring The Other. In the 1940’s it was Japanese interment camps. Nathan Uno is a colleague of my husband Ned Batchelder. Nate has written a piece comparing the American post-Pearl Harbor zeitgest of the 1940’s that led to the rounding up Japanese Americans and interring them in concentration camps in our own country. The hatred and suspicion of Asian immigrants of that era is very similar to Donald Trump’s anti-immigrant policy proposals. Trump has indeed spoken of rounding up undocumented immigrants — no matter what horrors they have run from in their own countries (Syria, for example) — and deporting them. He also says the same about Muslims.

People don’t like it when someone leaps to a conclusion, but I find it to be a very small leap from Trump’s anti-immigrant and anti-Muslim rhetoric to anti-Semitism, deportation, and camps. Why not? If Trump has not yet repudiated the support of the KKK and Neo Nazis, what does that mean? What is going on in his mind?

Of course Jews are not the only population I worry about. Trump shows that people with disabilities are not important populations either. What’s to stop him from allowing the White Supremacist thugs that follow him from leaping the small distance to deportation and camps — and even murder?

Trump’s treatment of Muslims, immigrants, and Hispanics exemplifies the same mentality of the Nazis and the White Supremacists. First you separate Us and Them. Then you blame certain ills on Them. Then you let your supporters chime in and you don’t censure them. Then you dehumanize Them with jokes, intimidation, rumors, lies. Then you can start to justify doing harm to them because they are no longer worthy of protecting. So we are already in the territory of It Can Happen Here. It doesn’t have to be Hitler, jackboots, brownshirts, or yellow stars for it to be the same kind of Nationalism that drove Germany in World War II. So I’m not comparing Trump to Hitler. Trump is already bad enough. Trump will bring his own unique brand of hatred and violence posing as policy.

If you care about the American way, and freedom, liberty, and justice for ALL, please vote for Hillary Clinton. It can happen here.

Friday, September 30, 2016

It’s a Wonder That We Still Know How To Breathe

What’s good is bad, what’s bad is good. You find out when you reach the top, you’re on the bottom.

–Bob Dylan, Idiot Wind

One part of me that has yet to recover from Nat’s trauma is my own advocate persona. My own professional views. It is bitterly ironic to me that I wrote an entire book on Autism Adulthood, (see, I still can’t resist the plug) — but now I am stumped as to what to do for Natty at almost 27. He’s living at home and we are getting used to it and enjoying it. But is that okay? Shouldn’t I be making five-year plans and then lifetime ones? But I lay awake last night trying to figure out how we were going to assure his distant future, when we’re no longer around, and I came up with nothing. I’ve taken to scoping out young adults in our lives and sizing them up as roommates for Nat. But then I think, “What’s the rush?” But then I think, “What, we are still here at Square One?” and then “But the best laid plans…” and then “Shut up Shakespeare, you didn’t have an autistic kid.”

So how, exactly, do we do this? One friend of mine says that she has plenty of money, so her plan is to buy someone as her son’s forever caregiver. Another’s plan is not to die, and mine is to become a ghost and hover in his apartment.

These are not good plans.

Meanwhile, I feel a little sheepish when people ask me to give talks about Autism Adulthood. I feel like Didn’t they get the memo? I failed Autism Adulthood! I already have to rewrite parts of that book, for God’s sake. Was I smug? Did I give myself a keinehora? But I know I took great pains to say, “for now,” and other qualifiers about Nat’s Adulthood programs. I made disclaimers — I’m not a financial planner, a special needs attorney, an expert — but I did feel comfortable in my role as a mom who’d made it.

Now I am putting my strategies to the test. I do have a couple of service-providing organizations looking out for good group home matches for my Nat but that seems like a long time in the making. I guess I have to have faith and patience that things will come together but that is not at all advice I would ever give to anyone else. Faith and patience puts the whole deal in someone else’s hands and that scares me. That is not a good plan. Other people are not as motivated as we ourselves are when it comes to our children. That is simply a rule of nature.

So my life has become a mixture of living-in-the-present, enjoying a more mature Nat, a more mature relationship with him, enjoying being able to be assured of his day-to-day good health and outlook. But there’s of course that undercurrent of anxiety, potholes in the paved road, that make me feel all jangly and uncertain.

But actually, that’s just a good description of life. No guarantees, no real certainty, and especially no rose garden unless you plant it and tend it yourself. And of course, be ready for that harsh winter kill.

And then prune your ass off and get an even better plant in the summer.

 

 

Wednesday, September 28, 2016

The Weight of Love

I marvel at the human healing process. It is nearly four months since we took Nat back home after discovering mysterious bruises on him, and ultimately x-rays of fractured ribs. If you’re new to me, yes, that is what you actually read. My 26 year-old son was hurt by someone or something in his life and we discovered the injuries by chance, on July 3. An investigation followed — and just wrapped up — and the state found no conclusive evidence of either abuse or neglect. That leaves spontaneous fracturing of bones, and as far as I know, that just does not happen.

But Nat, God bless him, bounced back so quickly. He was ready to trust people again — other than a few in his former programs (he has told me definitively that he is not going back to any aspect of his old life.) He jumped at the chance to go off to Colorado for his favorite sports camp — and attend for two weeks. He gladly went to parties, movies, social group outings. He took walks with respite people.

He does not seem to be in any pain. But now we know that if Nat becomes very still — and in this case, straightens his arms strangely when trying to laugh, and refuses favorites like jumping in the pool — something is wrong and must be looked into. He won’t tell you he is hurt, or he can’t, or he doesn’t feel it as acutely as we do, or…?

I still replay all of this, so many times, coming to the awful conclusion that I missed something. So did everyone else, but I am not everyone else. I am his mother. You ask God for a child, He gives it to you, you damn well better take it seriously. But I guess that doesn’t mean you can’t mess up. But you mess up and he pays the price. How am I supposed to let go of that?

I can’t. So I focus on other things. I take action. But I’ve also learned that time has a hand to play here. I’ve been living Nat’s recovery and our renewal moment-by-moment, and at the same time, I have been able to sit back every now and then and observe our process — and progress.

July we were reeling. I spent a lot of time crying and wrapping Nat up in my care, the most basic expressions of Motherlove — making his favorite food, arranging his room so that it was comfortable and cheerful for him, pillows, comforters, CDs spread out on the floor. Compressed my brain into one shape, one thought: How do I help Nat heal? What are his favorite things? Okay: physical activity. people who are his age. travel. car rides, vacations, plane rides.  That’s how I remembered the sports camp. I asked him about it, and he jumped at it. I then had to arrange it all very last minute and find the money to cover it, but it all fell into place. If it’s meant to be, I told myself, it will happen. And it did.

The nurturing of wounds, the indulgence in pure pleasure filled our July. I could see he was okay. By August we were able to start looking into the future. His day time occupations. What should he be doing with his time? He didn’t want to return to his old job. Enough with the shopping carts. So what else? I did what I’ve always done: ask other moms who were happy. Nail down the places with the best reputations. The places that communicate a lot with the parents. Who give choices, who have consistent, compassionate staff. A diverse, friendly peer group. Then we’d visit them. Take Nat along and see how they respond to him, and he to them. Happy people, happy choices, open spaces, lots of eyes on him. I found a good place and so August was Nat’s transition back into a daily routine.

September brought with it transition to schedules and calendars, pastel gardens to jewel-toned burnished leaves. Soft air became more defined, and time ordered itself into slots. Nat loves this. I do not. But once I gave up Summer’s sweet lazy heat, and plunged deeply into fall’s cool pool, I was okay with it. I settled into Nat’s new routine, and suddenly I had much more time — to teach and even to write a little. I could feel my body coming back to its old form, sensible eating, hardening of muscles. I was reemerging, following Nat’s lead.

I started to think even longer term, to the time when Nat would move back into a home of his own. I believe in this. Children gift you with their presence, ensnare you with their care and needs, you gorge on their buttery fat, their innocence. They harden and morph into real people who have to go out, away from you, into lives of their own. Seek their fortune, is how the fairy tales told it.

I determined that I would not rush this. Somehow after the initial stress of having Nat back in our house 24/7, the worry of how to care for him as an adult, to get to know him as a roommate essentially, we reached a kind of symbiosis. Like my return to physical strength and health, I came back to the very old, very familiar ways of mothering. I got used to him. I got to know this older, more mature, more together Nat. Not that he’s totally mellow or easy; he does some really noisy stimming, some loud fake-sounding laughter, and occasionally gets really mad at us for disappointing him somehow. Well, yeah, he’s human.

We get along, the three of us. The way we do it is, like the coming of autumn, we plunge in. Like anything really rewarding, you have to take that initial jump and make that first effort. Going into the ocean, it’s cold at first but worth it. The cold becomes the excitement. Or starting a bike ride, it aches in your muscles and burns your throat from the work. You try not to mind the hill because it’s part of it. And then there’s the downhill that always makes your heart jump and you gulp in the air along with the joy.

So Nat’s social life has become our social life. We take him to parties with us. And everyone knows Nat and they are both delighted and maybe inconvenienced by his habit of walking around and around the room and in between conversations and sitting right down at the buffet table and eating. And we have our Special Olympics friends, our music group friends. He takes social group outings away from us and we all get a break from each other. We still do spontaneous dinners out, but now we have to be aware of Nat’s noise and mood, and choose restaurants wisely. Or do takeout. And he’s learned that we do takeout in front of the TV, not at the dinner table.

It’s not going to last forever. I can see that October and November are going to be months where we start to ask around about group homes or potential caregivers. I’ve already started. But I’m not in a hurry. Yes, I’d like to be able to take the trip to Venice that we cancelled when Nat came home. I’d like to be able to spontaneously go to a movie with Ned and not think about Nat’s comfort.

But for now I’m still in it, Mother mode both old and new to me, where every thought does have a whisper of obligation in my ears, a constant, light pressure on my shoulders and heart; but that, I have found, is the weight of love.

Monday, September 26, 2016

Autism Takes Time

When Nat was a very little guy — before I knew about the autism that seemed to be knotting tight little nooses around his brain cells — I wanted nothing more than to be that friendly-faced mom who took her toddler to every single enrichment activity she could find. There was something called Warmlines, which promised mommy support and toys; Gymboree; library book hour; mother-child swim class; baby music school; and on and on. I’d go, but every single one of these activities blew up in my face.  I became more and more wary of the “amazing” teachers, the “patient” librarians, the fun-loving moms because my little guy just did not fit in. He would suck his thumb and just watch, or he would cry and cry. Or mouth the communal toys or walk in circles.

This experience was symbiotic, however. It was not all on autism. It was me, too. I don’t know if I was reacting to the Autism Unacceptance/ignorance going on with those mothers and their precious little normal kids, or if it was that I was going in with a big rock on my shoulder, but I was damned uncomfortable in those places.  I soon began to feel that everything was going to fail and that something was just wrong with my son, my parenting, and the stupid world.

To be really honest, I only blamed myself. Of course I did. Who blames a darling son, my Nat who caught my heart so hard that I almost didn’t dare to breathe. This boy, from the moment I clapped eyes on him, was in need of protection. Almost from the beginning of his life, I knew that my life was no longer my own.

I don’t know when it happened, sometime around when Nat was 10 when I got the idea to sign him up for gymnastics in Cambridge, with Special Olympics. I think what fueled this was a burst of development (on his part), a new level of communication skill, a new exuberance with the world around him. He did great in gymnastics even when things were falling apart for him in school and at home. And from then on, I put all my faith in Special Olympics.

We went through all the Phases of Special Olympics Parenting:

1) shy, hesitant, will-this-work?

2) hey, look at that, he’s actually playing!

3) hey, no one is judging him!

4) hey, the other parents get it!

5) hey, the parents are friendly!

6) hey, let’s make a playdate after practice! (First playdate!)

7) hey, the State Games are amazing hooplah-achievement-pride fests!

8) hey, there are other sports, too! All year-round! with the same guys!

9) hey, what else can they do, in addition to sports?

10) hey, my kid has a life.

Fifteen years after gymnastics, I am PhD-level Special Olympics Mom.  From Special Olympics I have made some solid friends, joyous people who make any excuse to throw a party where everyone’s invited, who find new organizations, new pursuits for our kids, who even create them. One friend found a violin teacher for his kid and out of that grew MUSE Foundation and two performing bands. Nat is now a drummer. Another friend has started AHEF, the Autism Higher Education Foundation, first as a partnership with the Boston Conservatory, and then with area law firms so that our guys can learn symphonic music, and also intern in offices doing data entry, shredding, copying, filing. Another friend started a social outing group so that our guys could go to concerts, sports events, movies, mini golf, restaurants. This venture led to our town expanding Parks and Rec to offer Recreation Therapy, and now our guys take cooking, nutrition, and computer classes. And one other friend discovered Ascendigo, a fantastic extreme sports camp for autism that firmly planted Nat into the Most Athletic Guy in Our Family category.

Nat learned how to ride a horse at Ascendigo, and that has now led to my finding him Equestrian Therapy at Ironstone Farm. I am hoping that there will be other animals around that will ease Nat out of his fear of dogs. But that may also happen through his Day Program, which offers Buddy Dog volunteering once a week or so.

So this fall, Nat has: Band on Tuesdays, Flag Football on Wednesdays, Drum Circle on Thursdays, and Equestrian Therapy on Fridays. In November we’ll start basketball on Saturdays.

I take Nat to these activities and I wait outside, or hang around the perimeter of the field. I talk to the parents or I don’t. By now I’ll see those friends of mine — the autism parents I’ve known forever by now — at one of the parties or the social group trips or the drumming. When I start to drag my heels and think about retreating — that decades old leave-me-alone tendency of mine — there’s this one friend who needles me into going. Autism friends don’t let autism friends sit home alone.

And if that doesn’t work, there’s always Nat who looks at his busy calendar and demands to go. I can’t imagine not having a full calendar now, and it’s because of Nat. Perhaps those neuron knots that seemed to be choking off his development just needed time to form their own pattern, and strengthen his mind into what it is today: powerful, determined, social (!), and ever-expanding, a universe in itself.

 

 

 

Saturday, September 24, 2016

Vote for Hillary. Don’t Kill Our Country

I’ve read many Nazi Germany books in my lifetime. Now I’m reading “All the Light We Cannot See.” I would advise anyone who is thinking at all that they would vote for a bully like Trump, to read this book and observe how It happens. Germany was ahead of everyone in civilization, sophistication. But they were suffering economically after WWI. They found their focus, on Jews, immigrants, disabled people. Anyone perceived as stealing from them — jobs, money, food, resources — and bit by bit they justified their cruelty. Little by little. Google Nurmeberg Laws. Read The Banality of Evil. Learn. Think.


Look at Trump’s background, look at his callous statements. He says *anything* he feels like. Not appropriate for a president. Downright dangerous. A president is scrutinized for every tiny nuance, by the rest of the world. Slights can start wars. Imagine Trump and his careless anger, riling another country. And look at his immigration policy. That alone should scare you. You think Hillary is uppity? Crooked? You’re worse than a fool. In the name of Something New for America, you are making the same mistake as the Germans. Evil can have a joking face on it. He’s no buffoon. He is evil. This is how it happens, make no mistake. Don’t kill our country. Vote for Hillary.

Tuesday, September 13, 2016

The Daffy Laffies

Nat has always had a laughing “behavior.” I say “behavior” because it seems small of me to label something as wonderful as laughter as a behavior. But in autism, a behavior, of course, connotes something that needs to be changed.  But when you speak of “behavior” without “a” modifying it, it can be good or bad.

Nat has been doing the Daffy Laffies for as long as I can remember. I actually remember his first laugh. As so many things are with Nat, you could watch him consciously learn how to laugh. You could actually see the realization lighting up his eyes, the delight with this sound, this feeling in his body. We were on the couch, the three of us. He was standing on Ned’s chest. He couldn’t have been more than a few weeks old (?) but yes, he was standing. Way before he could walk or stand for real, he would shoot up from your lap like rockets at his feet. Mom and others feared he would be bowlegged. Turns out legs were the least of our worries.

There he was looking down at us, with his white-blond hair and his eyes that looked like Cleo’s, the fish from Disney’s Pinocchio. He said, “Hehhlh.” a partially spoken, partially gulped word with a British “L” at the end. We laughed. He said, “Hehllh,” again. So happy with himself. One of his first sounds of communication. Then he strung the Hehhlhs together, connected with breaths and there he had it: laughing. “You laughed, Natty!” I might have said, dying to hear it again.

In a video from let’s say 1990 — real Baby Nat — he’s lying on the floor at my mom’s house and I’m waving some little stuffed thing in his face. He explodes, laughing with his whole body: a twitch, a squeal, surprised eyes. Then he settles back down into the rug and seems to forget all about it. I wave the little toy again and there he goes, his torso leaps (though he’s still lying down, too young to even turn over) and his laugh floats out of him like bubbles. Insane bubbles. Mom got very weirded out by the laughing — or perhaps by the way it would stop completely and then start up, zero to 60.

I see it now and I know, yes yes that’s probably autistic behavior, and I was feeding right into it with that stuffed thing. Why the hell not? Was it going to make him more autistic? Zounds. And by the way, just because it is autistic behavior, does that make it bad?

Well, sometimes. At age 7 Nat would wake up in the middle of the night laughing. During those days his laughter only filled me with despair. I wanted to sleep but something was waking him up. Dr. Bauman, our neurologist, thought maybe this was a small seizure. We tried to give him an EEG but he didn’t sleep deeply enough so it was inconclusive. I don’t think we pursued the laughing at that point; we were only interested in getting him to sleep the night. Clonidine eventually took care of that.

Over the years the Loud Laughing has been with us. At 13 I feared he would “spoil” his bar mitzvah with an outburst of uncontrollable laughter. His teachers told me to redirect it by having him alphabetize index cards. We stopped that eventually because it felt wrong to be squelching laughter.  “We had to name him Isaac,” Ned would say sardonically. (Nat’s middle name — Isaac — means “laughter,” in Hebrew.)

So at 26 he’s at it again. It seems to start up when he says “wheels,” in his self-talk. I don’t know what “wheels” means — wheels, I suppose, but what’s funny about that? Only Nat knows. I hear “heem heem wheels,” and I know that soon there will be hysterical laughter.  He pushes it and pushes it until it is so obviously fake it actually goes from annoying to truly funny. But still annoying. It begs to be stopped. But you can’t tell him to stop because then his eyes turn into Cleo’s again and he’s delighted. What may have started out as a self-stimulatory behavior — to boil it down to ugly clinical terms — morphed into attention-getting behavior. So how do the Genius BCBA’s treat this one? Pay attention at the beginning, ignore at the end? Yeah, screw that noise.

Nope. The best way to stop it is to say, “What’s the joke, Natty?” And then it dries right up as if laughter never existed.

But it will trickle back when he senses your relief that it’s over. You can watch it happen, his serious face all drawn together into a horsey moue, but if he looks at you, it cracks open to the real thing. And it’s pure Hehhlh.

 

Monday, September 12, 2016

If I Were a Good Mother

If I were a good mother, I’d read to Nat every day, on the chance that it would spark something and he would eventually read to himself. Or maybe it would make him want to talk. But I sit here, sleepy and addicted to my own book, comfortable in the big armchair. Nat seems happy in his room. Didn’t I hear him laughing up there? Fake laughter, but still. Something he enjoys.

If I were a good mother, I’d go upstairs and engage him so that he is redirected from fake laughter.

If I were a good mother, I’d have Nat make his own lunch. I would start with small steps. Choose your snack. Get a baggie. Eventually he would find the entree. Let me know when we needed to buy more. But that’s a stretch. He could do the snack, the baggie. He’d find an entree. He already can do that. But letting me know when we needed to buy more? That’s a whole new set of skills. That’s a leap that autism jumps up and blocks.

If I were a good mother, I’d type with him on Facebook. I would force us to wait for the words to catch, for his attention, his comprehension, to spark. For his fingers to type.  But haven’t I done that? He struggles so much with reading the posts, with understanding what was said, what is expected of him. He does not understand what comes after someone talks to him. Only what he has been directly taught. I ask him what is on his mind, what does he want to say, and he types our names. The five of us.

If I were a good mother, I’d feel happy with that.

If I were a good mother, I’d have signed him up for therapeutic horseback years ago, not just now that I found out he liked horses at camp. But I remember, so long ago, the two places that offered it were full. Waiting lists for years. They were also located 50 minutes away. Also, how do you pay for them? You have to call your insurance? That’s the worst thing next to car repairs and taxes.

If I were a good mother, I would have researched that program everyone talks about, in Merrimac, an hour away. Such good things about it. Horses, shared living, everything. But I don’t want him to live that far away. And I don’t want to discover that once again, everyone was a little wrong. Nothing’s perfect, but I never stop feeling like it is at first.

If I were a good mother, I would research maybe five programs before choosing where he is. But I stop because it is so tiring to go, to tour, to explain who Nat is, to watch them try to understand him themselves, to include him. It’s boring. It’s sad.

If I were a good mother, I would have realized he was unhappy for a reason. Losing weight for a reason. Holding his body stiff for a reason. I wouldn’t have stopped at a psychiatric solution. I would have insisted on an investigation. And back when we thought he had pain somewhere on his lower right side, I would have pushed the ER doctors to do an x-ray. We would have probably found out way back then that something was very wrong either in his apartment life or his workplace or his program.

If I were a good mother, I would know how to parent Nat and I would have the endless energy and wisdom to follow through.

 

 

Monday, August 29, 2016

Everyone, ASD or Not, Should Have a Resume

I was asked to update Nat’s resume now that he is at a new day program. I believe that all young adults should put together a resume, thinking outside of the box about possible skills they have. It’s all in how you look at it. Think of stim as a skill, hobby. Think of conversation tracks. Obsessions. Any of these are clues into a person’s interests and motivations. And so, parents, teachers, and caregivers — you should think this way, and help his/her facilitate responses. I put Nat’s resume together on my own, because it is tough/nearly impossible to get Nat to think this abstractly. And as you will see, his jobs have been very concrete. That is the kind of thinker he is. Your son or daughter may be different. Think about what they do and what that looks like, and maybe match it to some kind of job task. Nat has to put everything away, and clean things up as soon as possible. To me, this means he should perhaps have a job putting things away, cleaning up. And so he has.  See below:

Nathaniel Isaac Batchelder

Objective:  To work at a job with at least one well-defined task, preferably having to do with organizing and storing, with some variety and physical movement involved.

Education: May Center, Randolph, Massachusetts. Graduated 2011 with distinction.

Experience

2012-2016: Parking Lot Attendant,Shaw’s. Duties included collecting shopping carts, baskets, recycling. Awarded Employee of the Year 2014 by Service Provider.

November 2011–2012: Stockperson, CVS Drugstore. Duties involve stocking all coolers with drinks, keeping area clean of spills.

2009 – 2011: Coupon Messenger and Package Assembler, Papa Gino’s Pizza. Responsible for disseminating advertisement flyers throughout local neighborhood. Also in charge of assembling large volumes of pizza and entree boxes and stacking them up when finished. Worked with very few breaks.

2007-2011: Delivery, Office, and Cafeteria Assistant, May Center. Multiple responsibilities include carrying messages from school to corporate employees; entering data into PCs; taking snack orders for classrooms, assembling orders, and delivering to the classrooms; setting up and wiping down counters and tables before and after lunch.  Took joy in completion of all tasks.

2006-2016: Delivery Assistant, Meals on Wheels. Responsible for carrying meal trays into homes of elderly and disabled. Friendly and professional demeanor maintained at all times.

Other Relevant Experience: Sorting, washing, and folding laundry; vacuuming; emptying and loading dishwasher; raking leaves; entry-level lawnmowing; baking (breaking eggs, using mixer, setting temperature, greasing pan, measuring, putting ingredients away, using oven mitts to remove hot things). Any lifting, carrying, gathering. Willing and able to bring anyone anything.

Other Interests and Skills: Walking fast, biking, horseback riding, rock-climbing, basketball, swimming. Keeping track of schedules, ascertaining arrival and departure of those in the home, keeping track of the location of items, putting everything away, letting people know what is wrong or needed with a modicum of language. Creating singlehandedly an original language to keep thoughts private from others. Remaining calm under pressure.

References Available Upon Request, from practically anyone I have ever met.

 

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