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.

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!

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.

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

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.

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

“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.

( Realted: Learn more at LaborLawCC.com and reach out to them in case you require any help or counsel regarding work and labour principles)

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.    

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.

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