Susan's Blog

Saturday, October 1, 2011

The Right To Struggle

Lying in bed last night, my remaining thoughts were about 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 has become 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 has always set him off.  Whether for a beloved upcoming event, like a vacation on Cape Cod, or a strange new one, like going to sleepaway camp, we have often seen an increase in 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.  My poor darling.  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 call it Siege — and I do not want to traumatize Ben again.  I don’t ever again want to see Ben hiding under a table from his brother, unless he is playing Hide and Seek.  I don’t want him placating Nat, to keep him from exploding, even if we order him not to.

I don’t want any of that.  But just yesterday I was talking to a new friend, the mother of one of Nat’s (hopefully) future roommates.  “We’ve definitely seen some regression 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 they’ve been seeing.  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 (types of Social Stories, calendars, trips to the Day Program, upcoming graduation celebration and party).

But lying in my dark bedroom, I thought of J and his many many questions, and the stress that they all must be feeling, simply because 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 — even the right to get really anxious about it?  I’ve been wanting to tell him about what I’ve been working on 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 I was starting to say something about his social group; I did not even say 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; I felt afraid that he would wander from the group there.  I would be sending him with a different group, where the chaperones were more experienced.)

Nat froze.  Oh boy, was he listening.  He was listening with every fiber of his being, every neuron was reaching its tangled ganglia towards 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 is 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, okay?  So it’s not happening yet, but in November, okay?”


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–I love this piece. It’s pitch-perfect.

— added by Judy BF on Saturday, October 1, 2011 at 9:03 pm

I enjoyed reading this and will remember it as my son gets closer to his transition.

— added by Janet on Saturday, October 1, 2011 at 9:05 pm

I think you are right-he does need time to process this major change, and even if this causes anxiety, the changes WILL still come. You’ve held his hand through every other major change in his life, and you will guide him through this as well. You are his constant, the one unchanging thing in his life, and he is lucky to have such a thoughtful, insightful, and realistic Mom.

— added by Terri Packard on Saturday, October 1, 2011 at 9:21 pm

Now that he knows you can make up those stories for him. Make a big deal of it at home too. My youngest always gets a book/letter – except the end of Gr 2, followed by a disastrous Gr 3 (we got lied to) but that’s another story – that explains the next year or big activity. The 2nd I don’t think is necessary since he does understand verbally, but the 1st is nice, he can look at it over the summer and pop comments on it (usually out of nowhere) and I can then comment as well which settles him down and off he goes again.

I’m having troubles having 12 and 10yr olds this fall… 21 seems too far away yet I know will come all too fast.

— added by farmwifetwo on Sunday, October 2, 2011 at 7:14 am

We experienced a tiny taste of this with Dylan over the summer. He loved summer vacation, and everyday he would say, at least 50 times, no school today, no Dylan has school, and we would be reassuring him constantly. With Dylan you can’t say, you go back to school at the end of August because he doesn’t have that concept of time, he is just now understanding the structure of a week more. So on the last weekend in the summer, I had to say, yes you do have school on Monday. Of course the freak out, the tears, but I thought he deserved to know so he could get used to the idea.
I also completely relate what you said about majoring in Natology, and I feel that I have had to do this with D. It’s like in some ways, we are their window to the world, their #1 interpreter if you will, that understands the most of what they are saying, thru their words and actions, and also relays information to them in a way that they can understand best. It’s not that others can’t do this, it’s just that no one has majored in Dylanology the way I have. I know that if D says something like “want mom to draw yo gabba gabba family” it means something has really upset him…no one else would have a clue!!!

— added by Eileen from Florida on Sunday, October 2, 2011 at 7:28 am

Eileen, I love the way they are so similar, Nat and Dylan. I could totally imagine Nat saying something like “want mom to draw yo gabba gabba family.” Reminds me of his: “want to pick you up with the upside down and spin em spin em spin em” which was actually a signal of a happy Nattie.

— added by Susan Senator on Sunday, October 2, 2011 at 8:29 am

It goes too fast, that is for certain! Too fast.

— added by Susan Senator on Sunday, October 2, 2011 at 8:32 am

thanks, terri.

— added by Susan Senator on Sunday, October 2, 2011 at 8:32 am


My son will complete his transition program next spring. I want desperately to tell him “put the pedal to the metal” and make the most of the time he has left in a structured program. But, anxiety is his nemesis, too. So, I’m tempering my comments and hoping he will change his paradigm – make the most of what his program has to offer, instead of putting all his energy into resisting change (his default). (I’m also hoping to win the lottery:) Best of luck to you and yours as you enter a new phase.

— added by Caryn Sullivan on Sunday, October 2, 2011 at 8:42 am

It concerns me that Kyle cannot understand these concepts such as something or someone coming into his life and then leaving. I try to imagine how sad and confused He must feel having camp disappear or his favorite therapists (in his mind, one of his closest “friends” ) disappear, and not understand why these things happen.

Sometimes I wonder if he thinks I do this TO him or if he somehow thinks about why I can’t bring these things back. He doesn’t get angry just sad and confused. And then he asks for these things and people years after they are gone. And asks for them with such a serious tone of voice that I know it’s not a verbal stim.

Ouch. This part of mothering Kyle is painful because I want him to know I would never do that to him. So thank you for discussing that it’s our role to help these children and young adults learn to cope with these changes as best they could instead of just trying to protect them. As a mom of an 11 year old, I know that I need to make that mental transition from protecting my “baby” to teaching him how to handle growing up (to the best of his ability) just like his siblings.
Having said that, wow this is hard, really hard.

— added by RB on Sunday, October 2, 2011 at 10:34 am

Beautiful Susan and thank you.

— added by Penny on Sunday, October 2, 2011 at 3:30 pm

Your writing is gorgeous. I have a 17-year-old daughter with Asperger’s who’ll be coming of age in a few years, so your posts about Nat move me even more.

— added by Steph on Sunday, October 2, 2011 at 10:52 pm

“You won’t be there forever…it is their right to live an entire life”. Well, when I pick myself back up off the floor from that sentence… That pretty much encapsulates the driving force behind everything I do, and I hope I’ll remember I’ve bookmarked your post (yet again) for down the road, when I’m certain I’ll really need it. You always express every thought so eloquently, and I can’t tell you how much I hope my boy’s outcome resembles Nat’s. Please remember how fortunate he is to have had parents who always saw three steps ahead, and who continually made such wonderful choices for him!

— added by kim mccafferty on Monday, October 3, 2011 at 3:17 pm

But Kim, three steps ahead?? No, more like two steps forward, one step back. Or worse. We/I’ve made so many mistakes with Nat — see Making Peace… — but thank you for your kind words anyway!

— added by Susan Senator on Monday, October 3, 2011 at 3:40 pm

Thanks so much!

— added by Susan Senator on Monday, October 3, 2011 at 3:40 pm

Hi Penny,
Thank you! XO

— added by Susan Senator on Monday, October 3, 2011 at 3:41 pm

Oh Susan – you take a little break, back off from the almost daily posts, then you return to your laptop and WHAM – each and every post, you smack it out of the park!! Great work. Jared is doing better with some advance warning, like the end of summer or going to the doctor. We didn’t give him advanced notice about his most recent school interview – his father and I were anxious enough. He brought a shoe box full of his clay sculptures and was charming and responsive. Two years ago, advance warning about anything produced a variety of “NO” responses from Jared rejecting whatever was planned.

Off-thread – Jared and my husband are up in MA having just closed on a summer house. We might actually meet one day!! Hooty hoo!! Lisa

— added by lisa on Monday, October 3, 2011 at 3:47 pm

Thanks, Lisa… please look me up like you did the other time you were up here!!

— added by Susan Senator on Monday, October 3, 2011 at 3:50 pm

Thank you so much for always so thoughtfully and eloquently expressing exactly what I am chewing over and trying to formulate for myself — and always uncannily and unerringly at the exact time that I need your remarkable insights! Because of you and your posts, both here and on the ol’ Fb, I have been motivated and energized to research all the local resources for autistic young adults once they age out of their educational mandates. And I derive so much inspiration by following your lead. Susan — You have made me a better parent; both to my children on the spectrum and not on the spectrum!

— added by Teresa Peacock on Thursday, October 6, 2011 at 10:59 am

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 9, 2011 at 3:37 pm