Susan's Blog

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.