Susan's Blog

Friday, August 31, 2012

A great doctor’s visit

Nat had an appointment with his psychopharmocologist, Dr. M, this afternoon. I met Nat there with John, our beloved House Manager. I wanted Dr. M and John to meet, both so that John could add his observations to the conversation, and also because he needs to be familiar with all of Nat’s professionals. For this particular visit, I wanted the discussion to be whether we should begin decreasing Nat’s Risperadone even further. He has always been on a very low dosage, and even lower since the winter, and he is doing spectacularly well since he moved into his adulthood situations. (Knock wood.) Since graduating, Nat has shown much more interest in communicating, he has also worked at two new jobs (CVS and now Shaws), he has a varied day program, he has moved into a house with three other guys (soon to be just two other guys) and caregivers.  Also, his younger brother now goes to college.  That’s a lot of change for anyone. And Nat has more than handled these changes; he has taken them and run with them.

I got to the doctor’s office before John and Nat. I sat there staring at my cell phone clock and all the little kids running around — Nat’s doc is at Children’s Hospital; I believe it is more important that he have continuity of care than a doctor/stranger meant for adults. The doctor feels the same way. All of Nat’s doctors and his dentist love him and have said he can go to them forever.  I glanced over to my right, though, and Nat came striding in, this striking young man, all tanned, blond and tall. The man from Ipanema. It was like a delivery of candy, seeing him. “Hi Ma-ee,” he said casually, and sat down next to me. Mmmm delicious. I was also happy to see John. No problem navigating the Boston medical area and its parking issues.  John is breathtakingly competent.

I was so proud sitting there next to my handsome, still, Nat, while little kids ran around and the parents looked tired and anxious. I was neither. But I remembered that so well. I wanted to tell them how it used to be, just so they’d know, and hang in there. Not everyone can be Nat, of course; in fact, only he can. But still. There’s so much hope swirling around us you just have to kind of wait, resting lightly, until it comes your way.

We went into room 25 and the doctor was so pleased with Nat. Nat was at his absolute best, where he strains his head forward towards you to answer your questions exactly right. It’s so odd, obvious, and dear that he’s trying so hard. I sat there with a bubble of laughter bouncing in my throat, ready to burst any moment.

In the end, we decided collectively not to fiddle with the dosage at this time. The doctor explained to me that Risperadone is not a personality-damping drug, not at this dosage, not at all. He said it is an anti-anxiety, for the most part, similar to the SSRI’s like Prozac. (But it is not one of them. It is a neuroleptic drug, considered an anti-psychotic, but not heavy handed like Haldol.) He said, “I would not recommend a change yet because you don’t want him to have any kind of regression or incidents, as he had in the past. He could lose so much, if he were to become anxious and push someone.” I know, I know. I remember so well.

Medicating someone need not be seen as a moral issue. Psychopharmocology is not as exact a science as cardiology; but think of how easy it would be to put Nat on heart medicine if he had heart issues. So instead he has anxiety and sensory and processing issues and certain drugs can target those. Why should I be ashamed of that? If the risks are extremely rare, and we monitor him so closely (labs, EKG’s, office check-ins). This medication, Risperdone, a.k.a. Resperadal, gave Nat a better life, rather than a reduced one. I don’t think we should shame parents for opting for meds if they help and we’re careful.

At one point the doctor turned back to Nat after he’d finished talking to John and me. He looked at Nat for a moment and then Nat said, “How you?” Dr. M was so startled by being asked a question by Nat that he didn’t get it at first. So Nat answered for him: “Good.” The doc was flustered and asked me what had just happened. I said, “He asked you how you were and when you didn’t answer him right away, he answered for you.”

The doctor was so pleased. “Oh, that is very kind of him,” he said. I was just delighted. The only thing I wished was different was for Dr. M to speak more directly to Nat, and not as much to me and John. I showed him the way, by including Nat in everything I said, like this: “So Dr. M was just asking me what you do during the day, Nat. Will you tell him?”

“You work at Shaws.”

God, will I ever get used to Nat answering questions like that? I think it will be a joy forever.

 

Wednesday, August 29, 2012

The Right and Necessity To Vote

All this election fever has gotten to me. There is so much press about people being denied the right to vote, especially people who have a hard time getting I.Ds, getting to the polls, etc. Those with disabilities probably have it pretty tough to get near voting booths, but it is so important that they weigh in this time! With Medicaid and Obamacare at stake, we stakeholders must vote for the politicians who support services and care for the disabled.

I was thinking that I or Nat’s caregiver could teach him how to understand a voting card. Nat is over 18, he has a valid state ID, he pays taxes, and he enjoys a full life. I think Nat should vote. This is the first time I have thought of that. But if Nat can be taught to write his name, to read, then he can be taught to look at a voting card and fill in boxes.  Nat has such a big stake in this election. He stands to lose a lot of all he’s gained.

I think any 18+ year old US citizen who can read, think, and make a mark on a card should be educated about the issues in whatever way they can learn, and get familiar with the process of voting.

Regardless of whether Nat votes in this election, we all had better be sure we do. And we have to think beyond our pocketbooks and beyond the economy. There is so much going on out there. Helping your fellow man should not become a thing of the past. But we need to band together as a society and reinforce those values.  Think of it this way. If private funds could do it all, then why didn’t the disabled do more with their lives prior to these social programs? Why didn’t private charities raise enough money for assisted living facilities, job coaches, personal care attendants?

Is the answer that it’s none of your concern if you’re not disabled? But if that’s the case, why do you go along with supporting the military if your life isn’t directly affected by Iraq or Afghanistan? Why support public schools if you aren’t in school anymore? Why support highways in places where you don’t drive?

Don’t make mistake selfishness with freedom. People’s lives are at stake. Get involved and vote!

Monday, August 27, 2012

When you assume…

Nat’s group home is changing. This is not terrible, it is to be expected. One of the families has a very different set of values and goals for the home, and so the other three have decided to move on. Naturally the bulk of the discussions among the families and our service provider has been about how the young men will deal with this change.

Ned and I figured that Nat would probably be okay with it, because he is actually pretty good with transitions and being flexible — at least in the more recent years of his life. But truly, I always felt that it would be good if Nat could be flexible — my other children as well — because that is the flavor of our family. I find it very difficult to plan things. I don’t like being pinned down. I also find it hard to focus on something that is several events, days, or weeks away when I still have to get through other things first. Ned is much the same; he lives a lot in the moment, and likes to lose himself in his sons, his projects, work, and house checklists. Planning vacations or dinners out, for example, has always fallen to me in this relationship. That took me a while to accept — I still tend to force these things on Ned — but I’m better at it than I used to be.

It makes sense that our sons are the same way. Nat, being the oldest, is the most familiar with how we fly by the seat of our pants. One would assume that because he’s autistic, he freaks out from our “rackety-packety” lifestyle (that’s my mother-in-law’s term), but this is not the case.  We’ve changed many plans last minute, from which restaurant we’re going to, to deciding to stay an extra night on the Cape.

We moved a lot in our earlier days, and this was another change Nat had to adapt to. So it does kind of stand to reason that moving out of this particular group house would not be terrible. The big question we all had was how to tell our guys, and when.

John, the group home manager is just fantastic. We all love him. It turns out that he took the guys on a little field trip to look at a possible home, without telling them what he was up to. He assumed that they would not figure anything out. He was wrong about Nat!  Nat moved 5 times in his boyhood, and then into the school residence, and then into this group home. Nat has come with me on real estate jaunts, to check out houses. He loves wandering through other people’s houses. So when John took them to the potential house, it clicked with Nat immediately. And a few days later he thought he heard Nat saying, “Move out of R___ Road.”

Oh my God, he knows! thought John. So he sat down with Nat and went over the whole thing, what was to come, and when.

I didn’t know about any of this until our meeting today. But it explained a lot to me. I have felt, for the last few home visits, that Nat’s light was somewhat dimmer, that he seemed kind of distant with me. Lackluster. Not interested. I was really worried. Was he depressed about something? Yes, I assumed

So today I visited him in the afternoon, after his day program, and took him out to a big new mall that has a JP Licks (Nat’s favorite ice cream store) and also a Gap (what mall doesn’t?). John told me Nat needed new khakis for work and some button downs. Anyway, as soon as Nat buckled up in the car, I turned to him and said, “Nat, we have to talk about something very important coming up.”

“Yes.” And he was all eyes.

“In the fall, kind of when it’s your birthday, you and D and M and John are going to move to a new house.”  I looked over at Nat. He was grinning his head off.

“Yes.”

I continued to describe the house, and how it would be all the same guys, the same day program, the same John. Just the house would be different. “It was time for a new house,” I explained. “Sometimes people move to new houses.”

“Yes.” Giggle giggle grin grin.

Some things are pretty easy, it turns out. With autism, don’t assume stuff, and you may be pleasantly surprised.

 

Friday, August 24, 2012

Summer’s Top Ten

1. Mountain biking with Max through Narnia (his words)

2. Hot air balloon ride for Ned’s 50th, with all of us

3. Off road ride in Cutler Park, stuck in mud

4. Nat’s conversation with Melanie on Facebook

5. When I bought Scarlet (Specialized Rockhopper Mountain Bike)

6. Talking to Max at Peet’s

7. 27 mile bike ride alone to Provincetown

8. Provincetown afternoon with Laura

9. Nat’s gold medal 25meter freestyle race in Special Olympics Summer Games

10. Ben’s new face-showing ponytail hairstyle

Tuesday, August 21, 2012

A difference between two brothers

I guess I have to resign myself to the fact that there is always going to be some guilt and sadness around the decisions I’ve made for Nat. As I say this, I already can hear people rushing to tell me that it is the same for all kids, autistic or not. But no, this is different. Remember, I have two other neurotypical sons and this is different.

It’s different with Nat because he has very little say over what happens to him. No matter how conscious I am of his personhood, his adult self, his wants and needs and skills, because of his communication difficulties I have to make his decisions. I ask and I ask, contort the questions over and over to determine how he really feels about so many things, but often I don’t feel confident that he has really understood me or answered in a way that means something to him.  Nat’s brothers, on the other hand, can listen to and process what is said to them, and they can articulate questions that bring them answers to help them with decisions.  Even though Max so often cannot seem to plumb the depths of his feelings about something, I still feel that he is aware of what is being said to him. Sometimes I think he chooses not to make the effort to figure out how he’s feeling or what he thinks of something. That’s his way; he goes with the flow. But I don’t often think of Max as being buffeted by other people’s will.

Actually, as I write this, I’m realizing that maybe I do. Ever since Max was a little boy I have worried that he is too passive. From the time he was a toddler, he was the one who would yield to others. The bossy baby on the playground would always end up with Max’s toys. He would hand them over rather than fight, looking at me for answers. Why, Mommy? Why are they mean? Or was he saying, It’s okay, Mommy. I don’t mind. As he got older I worried about the same thing, in more complicated ways. His friend J seemed to tease him too much in kindergarten. His friend N was a subtle bully. His girlfriend H was very strong-minded and seemed always to get her way. And of course over the years Nat hurt him but still all his life Max only hit him once — with a toy hammer.

And yet, every time I would raise this issue of passivity to Max, he would give me this half smile that seemed to be conveying sympathy — for me. It was as if he felt sorry for me that I was so hung up on what other people did. And he was right. I remember asking him for advice sometimes — probably this was inappropriate but he seemed so wise and content, more than I ever had been at his age. I always kept it general, never mentioned names, but in reality I was trying to get his opinion on something that had occurred between a friend and me. And he really truly did help sometimes.

Over time I have come to realize that this quality of Max’s works both ways. On one hand, he may end up following more than leading. But on the other hand, he is so beloved, so respected and sought after by his peers and others, that it works for him. And really, he is a leader, though a reluctant one. At high school and then at college he founded clubs because he needed there to be a photography club and a Dr. Who club. He is just as much an older son as Nat is, because they are in parallel tracks, each striking out on their own very different adult lives.

And yet there is sadness for Nat because he is so much more passive that it pains me. It scares me. I can only hope that those he encounters, those entrusted with his care, will not take advantage of that. I stay involved in his life to the maximum, meeting and forming relationships with most of his caregivers. But still. And anyway, it is not really that fear that I’m talking about — his being a victim of a terrible crime — it is more on a day-to-day level, that I’m afraid he does not have much choice in anything he does.

And again, is that so bad? Don’t most adults have to work at jobs they don’t really like, are most marriages just what people want them to be? Isn’t life all about compromise and not getting what you want, and living with that as gracefully as you can? And who does that better than Nat?

But it is different for Nat. Because I don’t know if he even can tell himself what he wants, let alone others.  And therein lies the rub. The damn spot will not out no matter how much I rub.

Saturday, August 18, 2012

Autism Mommy Swami: Nose Picking

Dear Autism Swami Mommy,

First of all, I have to thank you for your blog and your book, Making Peace with Autism.  I am about a year out from my son’s diagnosis and I just getting to the point where I can read about autism without feeling anxious about my son’s future.
Now, onto our current issue.
My son picks his nose and eats the contents.  In public.  Now I realize he’s just three and a half and there are plenty of NT toddlers out there with similar habits.  But I worry that unlike his peers, he won’t catch onto the fact it’s not appropriate in public or “outgrow” it.  He sometimes is accepting when I gently take his hands and tell him “no.”  Sometimes he even accepts my request that he excuse himself and do it in private.  (Even if “in private” means going into his bedroom and turning his back to me without closing the door).  But lately, he’s been more and more upset when I try to (gently) discourage.  He doesn’t seem to do it for stress relief, mostly when he’s tired and bored.  
We also added a new baby into the mix in May, so that adds to the chaos, confusion and stress around here.
I try to deal with most of my son’s eccentricities with humor and grace, but this one worries me a bit.
It sounds like you had some success getting Nat to modulate some of his behaviors in public.
Any advice?

Thanks, from
Pick a Winner!

 

Dear Pick,

Your questions made the Swami smile on a dreary day, so thanks for that. But your issues here are definitely not a laughing matter. We all worry about our kids learning socially acceptable behavior, and when they’re very young, it’s scary not knowing if this will ever go away. I remember so many times when Nat would come up with new problem activities (notice I did not say “behaviors.” I think that I am going to avoid that word from now on: it’s so reductive. How can a human being’s activities be consigned to the petty category of “behaviors?” I do say “behavior,” because that’s different. Behavior is simply the code we all must understand, the way one must act in public. But when you put an S on it, behavior becomes behaviors, which is patronizing, analytical, distant, and clinical. What we’re really talking about are activities our child engages in that we wish he’d stop. So let’s just say that.) Anyway, when Nat would start doing things like carrying his BM from one toilet to another, or peeing in potted plants (did he think they were “potty plants,” perhaps?) or ripping photos and laughing, I would feel helpless and discouraged. I would wring my hands to the Universe, crying, “Now this?? Why, Lord?”

You panic. And with autism, there’s a feeling of powerlessness, because it can seem like it is Happening, from Autism On High, and there’s just no appeasing It.

But that’s not true, and you have to believe me in this. For autistic kids are just kids that are sometimes harder to figure out, harder to communicate with. But still they learn.  Autistic kids go through phases like everyone else. Growth can seem different sometimes, though, because it can really feel like your kid has lost skills out of the blue. Or picked up habits, just like that.

Of course it is true that some forms of autism are regressive. I don’t know about that in clinical terms, so I can’t speak about that. But what I do know is that all kids learn, some just get there slower than others. Some learn it and forget it again. I know I do! I have to relearn things sometimes. There are times in our lives when we are more ready than others. The same is true for our kids. I know that Nat suddenly could turn over in his crib. Suddenly he could crawl, when an hour ago he could not. Suddenly he let go of my hands and did his chimpy walk on his own. Suddenly he could talk, read.  One year he hated sports, the next year he became a gymnast. He used to ignore other children. Now he would rather be with peers than anyone else.

Nat does not represent everyone in the autism population, of course. But I know other autistic young adults and the same is true for them. No, they are not cured. They did not de-auticize. They still have some bad habits, perhaps unpleasant activities (like you and me). But they have learned a lot about how to behave in this world.

All of this I say because your guy is 3. So there is a lot of time for him to quit picking his nose. I know you are worried. And that is why you are observing this problem with so much energy. That’s good! That is how we zero in on cause, effect, and what works. You have already had the experience of showing him how to stop, and he has even sometimes excused himself to go do it in private. That is so great! There you have it: a precedent upon which to build hope and real change. If you have already seen that he responds to a gentle “no,” then you will see it again. He will do it again. Because he knows how.

Now, onto some practical suggestions:

1) Maybe take out a tissue and slip that into his hand and say, “Yay!” when he uses it, instead of picking and eating.

2) Or make a social story about what to do with a full nose:

A) Nose is stuffy!

B) Go get a tissue.

C) Blow nose junk into tissue.

D) Wipe nose clean.

E) Throw away tissue.

F) Clean hands.

G) GREAT JOB!!

Draw it. Or cut out pics from magazines to illustrate. Or use the Meyer-Johnson stick figs. Or sing it. Act it out. Be funny. Whatever he’ll understand.

3) If you find he’s doing it for attention, then probably the thing to do is give him attention. BUT, not then. For other things. Give it at other, positive times in the day. Look for praiseworthy moments, like, when he gets a tissue. Make that a very big, happy deal. Give very little attention, on the other hand, when he is picking.

4) Stay patient and relaxed. But also, remember that just about every human being on earth picks his/her nose. Kids and adults. Have you ever looked at the driver in the car next to you when stopped at a light? We shouldn’t, but we do. It’s always better to remember to use tissues, but it’s never a felony if we don’t.

And truly, the more skilled he is with a tissue and going into the privacy of his room, the better things will go for him when he hits puberty…

Love,

Swami

Monday, August 13, 2012

My latest Wash Post oped

Opinions

My autistic son’s step into the wider world — through Facebook

By Susan Senator, Published: August 10

Susan Senator, a writer in Massachusetts, is the author of “The Autism Mom’s Survival Guide” and “Making Peace With Autism.” She blogs at susansenator.com/blog.

When my autistic son, Nat, was about 8, we learned that he loved looking at family photos on my husband’s computer. This discovery rocked my family’s world. Before then, we did not know that Nat enjoyed our faces. He had never seemed that comfortable looking at or talking to us. Perhaps he liked the unchangeable nature of pictures, their static predictability. Or maybe the stillness of photos gave him the space to process his thoughts.

“Go there,” Nat would say, pointing at an image from my mother’s house during Passover. Once we understood that the house, our family and the holidays were things Nat liked, my son Max started taking pictures of them and we’d put them on the laptop for Nat. Laptop photos gave Max something in common with his older brother, perhaps for the first time.

But as with all people, interests fade. The laptop eventually lost its allure for Nat, at the same time his frustration with communicating grew. His brothers were often targets of his anger, straining our family relationships. During some phases of his teenage years, things were so volatile I feared that Nat would hurt us — or that we would hurt him. I didn’t know how to talk to my son and, far worse, I didn’t know how to listen to him. Sometimes it felt like life had frozen, that I was merely maintaining Nat rather than helping him grow.

Sometime in the past year, Nat had a sort of mental growth spurt. This is not atypical with autism. In Nat’s case, he suddenly seemed to labor less over answering questions and he became very interested in other people. He was more alert, if more on edge; it was as if he had acquired a new sharpness.

Nat still has great difficulty finding words to communicate, but it seemed like he wanted to try. I realized that if I remembered to wait, to be quiet for a long time, he could often formulate an answer — terse yet perfect, crystalline.

Many fellow autism moms began urging me to get Nat an iPad, saying he could communicate through it. I was reluctant because I thought that Nat just could not link the concept of computer activity with speaking. He had never played video games, and he showed little interest in using the computer to learn. He did type the occasional e-mail, with heavy support from his teachers, but he did not seem to enjoy it.

One recent afternoon we weren’t doing much; I was online, checking e-mail and Facebook. For no particular reason, I called Nat over to look at my Facebook page. He must have been bored, for he came right away. He seemed fascinated with the little thumbnail images of all the people I know — many of whom he knows as well. An idea began to bloom.

“Hey, Nat,” I said, “you want to type on my Facebook page here?” To my surprise, he answered yes. I had no idea what to expect and sat back while Nat’s finger hovered over the keyboard, his thoughts slowly coalescing into words. He’d finally shout one out and I’d say, “Okay, type that!” Then he’d sound it out, using the invented spelling of kindergartners — but this was anything but babyish.

Seeing Nat’s words on the screen felt miraculous. One of the first things he typed was — not surprisingly — “look at pikerts” (look at pictures). I posted a note on my Facebook wall that Nat was typing. Moments later, responses began pouring in. It seemed like all my Facebook friends wanted to talk to Nat. I asked Nat if he wanted to say something back. He typed some responses, “hi” and “how you.” I wanted to shout, jump and kiss him all at once but I stopped myself. I had waited many years for communication like this, but my son is also a 22-year-old man. I encouraged him, but quietly, the way he needs it to be.

Nat and I soon created his own Facebook account — with him doing most of the typing. In sending out friend requests, I invited his two brothers, a tricky venture because they did not want to friend me or their father. But Max accepted Nat right away, without a word. And he has been “liking” posts on Nat’s page.

Nat’s is just one Facebook page out of nearly a billion. But in our family, glaciers are melting and mountains moving. My younger son asked me the other day why I had put Nat on Facebook. I thought for a moment, then told him the truth: “I don’t know. It just seems like he’s ready to join the rest of the world.”

“Okay, I’ll friend him,” he said. Four little words, but sometimes that’s all you need.

 

Friday, August 10, 2012

They could all be Nat

“Crawlin’ clothes and dysentery,” Mammy grumbles in Gone With the Wind, as she boils more uniforms of the endless Civil War refugees coming through Tara. But it’s Melanie who has it right. She feeds and cares for those Yankee soldiers who stumble onto her land, even though she and her family are Confederates. Scarlet, of course, is horrified that she would do all that for strangers, and Yankees yet. But Melanie explains how she imagines Ashley wandering back from Spotsylvania or some GodAwful battle, into some Yankee woman’s home, in need of food and care, and how she hopes that he would be cared for. “It could be Ashley. They could all be Ashley,” she says, surveying the scraggly soldiers with syrypy brown eyes.

I’m no Melanie Hamilton Wilkes. But this scene from Gone With the Wind was in my head as I waited and waited at Stop & Shop for a young man and his job coach to finish packing my stuff. It was taking too long, I knew that. My hands itched to grab my boxes and cans and shove them into the plastic bags myself. There were two people behind me who already had paid. My stomach roiled with anxiety for this guy. If I were a regular person, wouldn’t I have been impatient and irritated?

But I’m not a regular person. I’m a crazed mother. I’m Nat’s mom, and so I know about this. Nat collects the shopping carts at a nearby supermarket. Nat getting that job was like being nominated for the Oscars, in my world. He even went through a job interview and job trial for it. But that was merely the endpoint of the ordeal to employ someone with Nat’s challenges. Disabled people and their families struggle and negotiate daily with the Powers That Be, the state and federal purse-string holders, the Deciders, to get a few hours of job coaching so that they can work even a little bit. The state Department of Developmental Services funds Nat’s job, as well as some Medicaid dollars (Medicaid is Mighty, please remember that. Never allow Medicaid dollars to be cut. You will be cutting people like Nat off from the world. You might as well find an island for them…) We count ourselves blessed that he has it. Work is an essential part of being human. I also feel for the 8 percent or so other Americans who are unemployed in this country, and I want them to work, too.

But today I was thinking about my grocery bagger.

That young man at Stop & Shop has this job and I want him to keep this job. I want him to pack my stuff, and I want him to shine at it. I also want his job coach to be kind to him. And train him properly. I don’t want anyone to complain that he’s too slow. I want to shout at everyone: “It’s okay! Just breathe, balance your checkbook, look at the Enquirer or Cosmo. Relax, and let him do his job.”

Because he could be Nat. They could all be Nat.    

Sunday, August 5, 2012

Not enough

That 22 year sadness is with me today, like yesterday. Nat came home with his light dimmed. He went to sleep right away. He didn’t want to do anything. Still, he watched and waited for me on the porch, to see the moment I came home from my bike ride. He watches for me, then when I pull up into the driveway, he walks back inside without a word. I hear the french door slide shut, I look up, and no one’s there. But I know.

I felt his face today and kissed his rough oily cheek to see if there was a temperature, but there was none. I asked him if he had a headache and he said a sharp, clear “no.” He wore a yellow Tour de France shirt — I went to Paris and all he got was that lousy tee shirt — and his hair was, as always, fluffy gold. He looks like a sunny meadow filled with haystacks under a blue sky. But that light was definitely dimmer. Why? Is he happy with his group home? Are the new staff good to him? Have they taken him on bike rides, for ice cream, or sat down with him to do Facebook? He seems to like Facebook.

But did I even do any of that? He didn’t want to ride with me. Ned took him for ice cream and I didn’t go. I was tired . I didn’t do Facebook with him, I forgot. He helped me with food shopping and he went on a walk with Ned, but it was all as if by rote, not from joy. I admit that I didn’t feel much joy this weekend, either, but that wasn’t because of him. I had slid down a rabbit hole, a pretty deep one, the kind I haven’t stumbled across in months, maybe a year. I wanted to get out of my body, the way you feel when you have a fever and can’t get comfortable. I just could not feel good. I rode 42 miles this weekend and still it took just plain old time to feel kind of like myself again.

This blog post was in me, hollowing me out like hunger. I just keep asking Ned, “is Nat happy? He didn’t seem happy.” And Ned, dear Ned, who always always takes care of me, said, “I think he’s happy.”

I tell myself that we have First World Problems. It’s not like someone is coming to chop off our heads tomorrow, to put it like Louis C.K. My problems are not knowing if my 22 year old glowing yellow son is happy. My problems are that I hated a conference I just paid a lot of money to attend. Or that my back hurts after 23 miles and why do I still gain weight if I ride so damned much?

But they’re my problems, and I should be welcome to them. I’m worried about my boy. I want him to have everything. On weekends like this it is just never enough.

Friday, August 3, 2012

My view on what autism is — and is not

I kept away from the whole uproar over the new DSM-V version of the autism spectrum. So I really don’t know where the Autism Powers That Be stand on the matter. That’s how I am; I don’t really read autism blogs or autism books (WHAT??? SHE SAID WHAT???), so I don’t know these things. I just read fiction, news (The Boston Globe and The New York Times), listen to NPR, and talk to my closest circle about things that matter to me, autism being high on the list. Nat, to be more specific, is at the top.

But autism itself interests me. And the definition of autism does, too. I have known for a long time that everyone who is autistic is autistic in a different way, just as all people are different. And yet, paradoxically, there are similarities, or it wouldn’t have a unifying term: autism. But to me, what autism is largely reflective of how Nat acts; in other words, my experiences with Nat inform my definition of autism. Of course I know many others deeply inside the Spectrum, and also floating in various other parts of the Realm.

Nat is considered a Priority One in Massachusetts, which means he qualifies for many services as an adult. This also means that he is considered Low Functioning, Severe, MR, ID, DD, and other mean-and-nasties. I have rebelled many times against these terms. “Retarded,” for example, is so reviled that we had to crush the word, banish it from our midst. Likewise there is the great Person First debate. For the most part, I say “autistic people,” rather than “people with autism,” because the latter sounds contrived. I would also use the term MR (Mentally Retarded) to describe Nat if it were “okay” because frankly I don’t feel there is anything wrong with how he is. Well, let me rephrase that. The fact that he has MR and autism definitely limit his existence. He is limited by his disabilities, even though I think he is talented, lovely, bright, hard-working, easy to get along with, and many other beautiful qualities.

But I’m not supposed to say that. I’m not supposed to think that. But what if I do feel that he is limited? What if I believe that? Of course he is limited; in this world you need to be able to do X, Y, and Z in order to survive. Survival is our paramount driving force as living creatures. So it stands to reason that those who need more help surviving have a harder time, and can do less.

This is not bad, but it does make me sad as a mother. I’m sad for him, even while I’m happy for him and proud of him. And I no longer want to pretend that I’m not. I have accepted Nat’s disabilities, and I have done everything I can for him, and always will, but I am sad that he cannot have the opportunities his brothers have. And please don’t tell me that all we have to do is keep on making him communicate on the iPad. That does not equal having the kind of life his brothers have. His progress with the iPad makes me wild with delight. But I am still under no illusions that he is going to be able to function normally, ever.

If you can be on your own, you are higher functioning. If you can talk and understand and respond and keep on a conversation, you are higher functioning than Nat. If you can travel on a plane or train on your own, you are very high functioning. And you are not in the same ballpark as Nat. He does many things well, but he does not understand how to be safe. If you know how to be safe, you are high functioning.

Now, if you suffer and stuggle to be high-functioning, that does not take away from the fact that you are still high-functioning. It merely makes you human! We all suffer! We all have our private Hells. There is no way to compare. I am merely looking at ability in the real world.

I guess what I’m saying is, the DSM should have kept Aspergers out of the Autism Spectrum, because Aspies are so high-functioning. I brought Nat to an ASAN meeting and he stimmed the whole time. He was probably listening to everyone, but was he processing and keeping up? I really don’t know. He cannot answer in a way that keeps up the conversation at the level in the room.I venture to say that he was even a little disruptive. No one cared, of course, because they are all kind and good people who really wanted to meet Nat. I cared, though, because I was so sad about the difference. I wanted Nat to be a real, active part in that conversation at ASAN. I wanted Nat to state his viewpoint, to make his experience relevant. But all he could do was show people who he was and how he could not be a part of the discussion. I love him so much, and that means, as his parent, that I wanted that for him.

I will probably be raked over the coals now for saying all this. It’s just that I have been struggling with these thoughts and feelings for a long, long time and I wanted to express them because I need to be honest. I don’t mean to be hurtful, but frankly, I don’t see how it hurts Aspies to be called high-functioning! It means they can do more in the world. They need less help than Nat and the Priority Ones and Twos. Maybe there are components of similarity, but truly, to me, I hope people feel relieved to have Asperger’s, just as I am relieved that Nat has progressed as much as he has. But I do not feel that both are on the same Spectrum. I feel that the DSM-V is wrong to make the Spectrum bigger in this way. It is already too big. Isn’t it better to keep Asperger’s its own high-functioning thing, like ADHD or LD, rather than saying it is autism and then setting up this painful dichotomy?

I love Nat, I’ve made peace with autism, but I’m not going to say that I love Nat’s autism. It makes his life too hard. He will always need others to help him with pretty basic things and that is a dangerous situation for a person to be in. I love Nat, but I do not love the struggle he has to endure just to live in the world.

 

Autism Mommy Swami #15: What would I have done differently?

Dear Swami,
Just read you FB post about hoping for the best, preparing for the worst and I knew I had to write you, even though I feel ill just typing this and am filled with dread.  My daughter is ten, reading, writing and typing at a first grade level, (though this is a woefully inaccurate way to describe her abilities.)  I have largely ignored the idea of preparing for her future, have my head firmly placed in the sand, too busy with just getting through the day, forget thinking and preparing for when she becomes an adult and quite honestly feel sick to my stomach even thinking about it!  So here’s my extremely reluctant question to you – What would you have done differently in preparing for Nat’s future, knowing what you know now?

–A Mom

Dear A Mom,

First of all, I don’t believe that you do have your head in the sand because of the very fact that you’ve asked these questions. It is difficult enough for autism parents to deal with the present. Dealing with the future — well, that’s a horse of a different color, as they say in  the Merry Old Land of Oz. But you are not in Oz, just like you’re not in Holland, or Italy, or Mars. You’re here on earth with a kid who has many needs, both special and not so. And you must, absolutely must, think about her future. That is the most basic point of our existence: to survive, and to carry on the genes.

And so, sooner or later, we have to plan, to think ahead. You ask what I would have done differently, though, and so you are asking me to go back to the past. The Swami is so much better at past than future. No one likes to beat up the Swami over past mistakes as much as she herself. So thank you for the opportunity, here I go.

What would I have differently? That’s easy. I should have been happy. Aside from all the other concerns that I will get to, being happy, enjoying the present with Nat and myself, and the rest of us was the paramount item on the agenda. The truth is, no matter what is going on, this is it, this life is all we’ve got. I’m a Jew, and so I do not believe in an afterlife, heaven, hell, limbo, reincarnation. I don’t put anything off, and that is because of my innermost beliefs.

Living in the now casts a glaring light on everything in ones life. You have to see it all for what it is. There’s no hiding. But this doesn’t mean that there’s no hope. There’s always hope, there’s always stuff that gets better. It’s just that you can’t live for that.

When I look back at every turn in my road with Nat, I wonder, “was that when I should have…?” But knowing who I am, what I know, the answer is, “Nah.” Because I always did my very best. I never gave up. Would being more consistent in Nat’s home programs have made a slight difference in his functioning levels? Would a gluten free diet have cleared his mind somewhat?

What the F does it matter? How can you go through life measuring everything? Why must all progress by quantified in order to count? The decimals in your bank account. The digits in your IQ. Your SAT scores. The number of letters after your name. The number of crosses you have to bear. All of that is a distraction from the moment. A moment in your finite life when you could have been happy.

Sure, you all should

1) see special needs consultants to determine the fiduciary aspects of your child’s future. You should

2) be on first-name basis with your state department of developmental disability. You should

3) be familiar with how to bug a state representative to sign onto one bill or another. You should

4) be thinking about who else can assist with your child’s guardianship way down the road, aside from or along with you. You should

5) be cultivating a special needs community of peers that your child can socialize with, perhaps live with. You should

6) be finding out about eligibility for SSI and Medicaid. Or SSDI. You should

7) be studying your child to discover what he/she likes to do and is good at so that you can help her come up with a job or career one day.

You should not be ruling out anything like work, college, marriage, fun.  Especially fun.  Did I mention Special Olympics?

And so A Mom, I don’t know what I really should have done differently, except that I wish I had relaxed a lot sooner and just smiled and enjoyed my life and my sons more.  It’s as simple — and as difficult — as that.

Love,

Swami