Susan's Blog

Tuesday, December 4, 2012

Step out into the light, my darling

The phone just rang, “Private Caller.” It’s Tuesday, so I figured it was Nat. We had our usual conversation, something like this:

Me: “Hello?”

Nat: “Hi.”

“Hi Darling! How are you?”


“So did you have a good day today?”


“What did you do?”

There’s some fumbling with words, false starts, and then: “You went swimming.”

“Oh, good! Who did you swim with?”

A pause. “Richard.”

“And where did you eat lunch?”

“Natick Mall.”

“Oh, that’s a nice mall.” And so on.

I don’t know why I said that, I guess I was just relieved that they went to upscale malls, not sleazy ones. I don’t mind him visiting malls regularly, don’t most Americans?

But sometimes I feel sad about his life. Not what he does, exactly, but the fact that no matter what we do, no matter how mindful staff are about self-direction, independence, Nat still has most choices made for him. And I wish that were different.

I get a tinge of pain every single time I say goodbye to him, still, after all this time. He gets picked up at 11:30 Sunday morning from his weekends here, and even if we ask him “do you want to leave in the morning or after lunch,” and he answers, it still makes me sad. It still seems like things are chosen for him. It is still a limited choice, he still doesn’t know to say, “What if I don’t want to go at all?”

Sure, you could argue that none of us has absolute freedom. Well, I’m not talking about absolute freedom. I’m talking about a normal amount. Max chooses his college, within a handful that accepted him, and he chooses his classes. He chooses his clothes, his food. He chooses his friends.

Ben has a girlfriend now. He just decided he liked this girl in his art class, and the next thing we know, he’s going out with her.

Nat sometimes seems like a prisoner of other people’s calendars, other people’s decisions. And I wonder, does he know? Is he sick to death of being treated kind of younger than he is?

Ned says, “It’s the age-old dilemma: how much does Nat know? What is he aware of?” We just don’t know and so we have to hedge our bets. We have to aim for the denominator that is the most likely. Not the lowest, never that. I aim high, and I watch and listen so carefully to see where it lands. I know now that at least he can make a true choice, he can even sometimes offer up true accounts of things. So maybe someday he will be volunteering his opinion, his ideas, his wants, on a regular basis.  Declaring himself, the way Max has a major or the way Ben has a girlfriend. We have to declare ourselves somehow, don’t we? And if we can’t, and others project their own shadow shapes onto you, how do we learn to step out into the light?

As George Harrison might have said, “I really want to see you, Nat, but it takes so long, my Nat.”




The question is…. would he request or initiate something more if you didn’t give him the choices?

I have noticed even in the “passing for normal” one, that outside of things that they know about, they are truly blind to what is available/there/possible etc. Also, those things that they don’t understand/have done before/ etc are frightening to try the first time so, I have to make that step for them, see how it goes, and then let them decide to continue or stop.

That’s probably where Nat is. Instead, he has a series of activities he enjoys – you’d have major behavioural problems if he did not – places to go where he feels safe and he’s living on his own. The more places he goes, the more options he has for when you ask him “would you like to…..”. It’s the best we can do.

— added by farmwifetwo on Wednesday, December 5, 2012 at 8:51 am

“[if]…others project their own shadow shapes onto you, how do we learn to step out into the light?”

Such a poignant post, Susan. This makes my heart ache.

— added by Liane on Wednesday, December 5, 2012 at 10:53 am

Tahnk you, Liane, that means alot.

— added by Susan Senator on Wednesday, December 5, 2012 at 11:53 am

Dear Susan,

Beautiful post that touched this mom’s heart. My adult daughter (23) continues to amaze me and delight me with her ability to communicate her needs. On a long hike a few weeks ago, we came to a fork in the trail. I headed for the long way home. She stopped dead in her tracks and put her hands on her hips. Her expression was priceless…. Really, mom, that long trail, haven’t we done enough? It tickled me to no end. She made her choice and let me know. So nice to see she can advocate for herself!
Our young adults continue to grow, you see it. Thank you for your eloquent words and fierce advocacy.

Mary Ellen

— added by Mary Ellen on Wednesday, December 5, 2012 at 8:21 pm

You speak truth. It’s a never ending battle, and goes nuclear with residential placement (how many outings are for the benefit of staff? I.e. Dunkin Donuts for people who are an restricted diets? valued outcome: “community interaction” – really?) However, if you think about it, our guys have been getting nothing BUT compliance training since early intervention. I think everyone should demand decision-making training, starting in EI! This becomes critical not only in terms of where and when to go do what, but in specifics, notably sexuality (and particularly sexual abuse)…

— added by Victoria Gillen on Thursday, December 6, 2012 at 2:17 pm

PS – I found the conversations improved tremendously once we set up face-chat. Well worth checking out.

— added by Victoria Gillen on Thursday, December 6, 2012 at 2:18 pm

Great idea!! Thanks!

— added by Susan Senator on Thursday, December 6, 2012 at 2:29 pm

I am constantly questioning what Justin, my nine-year-old, knows, and what he is aware of. I really struggle with the “not knowing” and think about it every day. Thanks for reminding me so beautifully always to “aim hi” in my thoughts about him.

— added by kim mccafferty on Monday, December 10, 2012 at 2:00 pm