Susan's Blog

Thursday, October 13, 2011

Published in Today’s Jewish Advocate

This piece ran in today’s Jewish Advocate.  It is an edited version on the recent blog post “The Right To Struggle.”

Susan Senator
A s I lay in bed last night, my remaining thoughts were about my autistic son Nat. I was thinking about his imminent graduation and wondering how he would feel once he learns of it. This subject has weighed heavily on my mind because the idea of revealing this news scares me. Traditionally, Nat becomes seriously anxious in the weeks leading up to a major event, and this one – no more school – is perhaps the biggest he’s ever faced. Or at least it is right up there with moving into the school residence.

Nat’s anticipation of many events has always set him off. Whether for a beloved vacation, like going to Cape Cod, or an unfamiliar new experience, like going to sleep-away camp, we have often seen an increase in his nervousness. His responses range from fast stomping around the house to repeating questions nonstop about the streetlights or other people’s breakfast choices to jumping up and down, screaming and biting his own arm. But I guess in some ways that is no less self-destructive than when I gorge on ice cream until I’m sick, during my periods of deep depression, or go to bed in the middle of the day, or blow off a hundred commitments to people.

Still, we have become very careful about how and when to bring up changes and transitions. I do not want to have to go back to times of fearing Nat – I used to refer to such times as being under siege. Nat’s aggressive and anxious periods used to keep us prisoners in our home, always fearing the next outburst. I remember my youngest, Ben, hiding under a table from Nat. I never want to see such fear in my children again; nor do I want a child of mine to feel so out-of-control, as Nat must feel during those times.

But just yesterday I was talking to M, a new friend, the mother of one of Nat’s (I hope) future roommates. “We’ve definitely seen some regression in J since we’ve told him he’s going to be moving out, an increase in some really challenging behaviors in J,” M said, and she described some of what she’d been seeing: shredded paper, self-stimulatory speech. I thought to myself, Yeah, Nat will do the very same thing, once we tell him. I have been figuring we would tell him after we have had a meeting with the entire transition team, on the 12th, when we will plan Nat’s final month of school. I have been waiting for the staff to tell me what they usually do and say to students when graduation is upon them. But lying in my dark bedroom, I thought of J and his many, many questions, and the stress that J’s family all must be feelng, simply because now J knows. And suddenly I thought: Doesn’t Nat deserve to know, too? Doesn’t he deserve to have time to get used to the idea? Even – and this is strange, but I feel it is important somehow – the right to get really anxious about it? I’ve been wanting to tell him about what I’ve been preparing for him: the day program, the roommates, the apartment – but no one has given me the go ahead. I’ve been waiting for A Sign.

However innocent and sweet Nat appears – and in fact is – he is also a man of 21 and very astute. For a person with limited language, he has compensated with becoming very sensitive to our nuanced voices, whispers, mood shifts and even the way we speak in code around him. We refer to Nat as “Eldest” when we need to discuss him in front of him. But somehow I don’t think he is fooled. Just the other day while we were all in the car together, I was starting to say something about his social group; but I did not even say the words “social group”; I wasn’t speaking to Nat, either. I merely said, “I wonder if those guys are going to the –” I didn’t even finish my thought. I was wondering if those social group guys were going to the Topsfield Fair. (Nat was not going with them; I felt afraid that he would wander from the group there. I would be sending him with a different group that had more experienced chaperones.)

Nat froze. Oh, boy, was he listening. He was listening with every fiber of his being, every neuron was reaching its tangled ganglia toward me, eking out meaning from the very molecules in the words coming out of my mouth. I saw him in the rear-view mirror, his wide, tilted blue eyes filled with questions, just like when he was a baby looking up at me from that back seat. (If you looked at the eyes and blond bangs, and blocked out the lower face with the beard stubble and man’s jaw, it was the same exact face.) And I saw that he was still so dependent on me for information; he hangs on what I say because I have introduced him to much of the world. Not only that, I am the one who figured out, so long ago, how to explain things to him to reduce his anxiety. As his mom, I had to major in Natology, and get an A every time, or he would be scared or sad. It has been my job to prevent that.

Or so I’ve thought. Last night I couldn’t sleep because I realized that no, it is not my job to prevent that. Protect him, yes; but my job is also to give him the skills and experience to protect himself. The whole reason you have school and then independence is so that your babies can eventually survive – on their own, to whatever degree possible. Because you won’t be there forever. But also because it is their right, their right to live an entire life. J was struggling, but he was learning and growing, and his mom was there to support and explain. But J was doing what he needed to do. Shouldn’t Nat have that same opportunity?

So I couldn’t stand it any longer. Today, driving him back to The House (the school residence), Ned and I were talking – in code – about the graduation and party. Suddenly I blurted, “You know, Nat, you will be leaving school soon. Right around your birthday.”

“Yes,” Nat said, snapping to attention, listening in that deeply neuro-aware way.

“So, in November, you won’t have school anymore. You’ll graduate. We’ll have a party. And you’ll come home to live.” I stopped there, because that was all I have for now. As soon as the home and roommates are completely certain, as soon as I have a building to show him, I will tell him about that move-out. For now, it was the leaving-school concept that I felt he had to hear about, at last.

“And Nat, we’ll talk about it a lot more, OK? So it’s not happening yet, but in November, OK?”


There was that face in the mirror again, so vulnerable, so young. But in a few moments, he went right back to his quiet self-talking. So darling, so innocent! And yet also, so ready.

Susan Senator is the author “The Autism Mom’s Survival Guide” and “Making Peace with Autism.” Her Web site is


On a more timely basis, I am repeating the message from one week ago I posted to your original blog entry of 15 days ago:

Although unlike your family we did not live in Brookline from our autistic son Ben’s birth until he aged out of IDEA at 22, we did live in Brookline from when our son was 3 until 21-1/2, which was 18 years ago. After several months more in the same residential school, the Boston Higashi School, while funded by DMR, our son Ben left school at age 22-1/2 and chose to move half-way around the world to Israel, followed by us his parents 1-1/2 years later. The transition went extremely smoothly, even though Ben is completely nonverbal and would appear to be much “lower” functioning than your son Nat. Ben did show increasing extreme anxiety up to age 13-1/2 and completely crashed while in the Brookline Public Schools at that time. He then went to Japan for 2 years (where his extreme anxiety went away never to reappear) and then continued in the same program when the Boston Higashi School opened in August 1987.

I wish the lessons learned about our son while we lived in Brookline could have been remembered and applied to those who followed him such as your son Nat. Unfortunately, the administration in the Brookline Public Schools seemed to have forgotten everything, and so did the members of the Brookline School Committee with whom I interacted for a number of years, mostly in the 1980s. Is it worthwhile trying to go over “ancient” history? If someone thought it is worthwhile, I will try to respond.

Arthur Golden of Jerusalem Israel (where I live with my wife of 41 years and our oldest son, 39 year-old Ben)

— added by Arthur Golden on Sunday, October 16, 2011 at 3:56 am

Hi Arthur,
The administration of Ben’s era was different from that of Nat’s era and now it is different again. I was on School Committee and did my best trying to educate the administration but Brookline Public Schools was determined to do things its way. Now they have programs for students on the spectrum but I would not be surprised if they were still lacking important expertise. Nat had to be out of district back then and I’m pretty sure he’d be sent out today.

Having said that, you can always try.

— added by Susan Senator on Sunday, October 16, 2011 at 8:08 am

Hi Arthur-I have heard Brookline is ranked pretty low when it comes to understanding autism and is not a district parents flock to for services. No surprise there. I find that the wealthier districts are some of the worst when is comes to educating kids on the spectrum. They’d rather just get them out of district.

— added by Deb on Sunday, October 16, 2011 at 4:14 pm

Well, I wouldn’t go that far. The new superintendent has brought in some outside expertise from established Chapter 766 schools, and set up a few programs within, that I’ve heard good things about. They don’t “get them out of district” like they did in Nat’s era — there are simply too many. There are autism programs of varying degrees of severity, and a good deal of inclusion and I truly don’t know that many younger parents who are really unhappy, which is saying a lot. That said, I doubt Brookline is the *best* for autism by any measure.

— added by Susan Senator on Sunday, October 16, 2011 at 6:23 pm