Susan's Blog

Friday, January 1, 2016

A reason to raise a glass

On New Year’s Eve, my son Nat drank some spiked lemonade and passed out after midnight — from exhaustion. His roommate John texted me the next day to tell me. I don’t know if there’s ever been a time in Nat’s 26 years of life when I have not been worried about him, but when I heard about Nat drinking, I was not. In fact, I was happy. This felt like a rite of passage. Nat partied with friends on New Year’s Eve.

I am not as odd as I sound. Nat has fairly complex autism, and so his social development has been hard-won. So even a night of drinking might actually be cause for celebration in my family.

Most of the time I need to read Nat without words,  through a combination of watching his body language, and listening to his very quiet unintelligible self-talking. When those strings of Nat-words first emerged in early childhood, they seemed to loop and coil in the air, playful, joyful, and we called it “silly talk” — a deceptively lighthearted term for something I actually feared like a disease. Surely this was a sign of deep disability, far worse than we had realized when he was first diagnosed. And it was a call to arms for me. I had to get rid of it, or he would never be okay.

This began the long hard era of battling autism. Nat’s teachers at the time exhorted us to engage him, as much as we possibly could, fight for him, keep the dragon at bay. Interrupt, channel, redirect these impulses of his, dam up the ever-opening tributaries of aberrant, abnormal behavior. Our kid had to be forced into normal, or else he would be lost.

And so, raising Nat was exhausting, debilitating — for me, but far worse, for him.  What is a child to make of always being given the message that he is off somehow, that every sound that comes out of his mouth had to be caught by watchful Mommy, and pummeled into something else?

I don’t know when the light went on in me, and I realized I could stop. “It” wasn’t working, anyway. Silly talk will out. And what a relief it was to finally understand that, and to let go of all the fighting. Suddenly I knew in my core that yes, my job as Nat’s mother was to help him be the best he could be, to educate him about how to act in the world, but my main purpose was to let him be who he was.  One way that I could help him do that was to arrange for him to live away from me. Since the age of 17 Nat has had roommates and caregivers, and I have been a visitor in his life. His teachers and caregivers took over from me the work of teaching him independence.  This positive development has been heartbreaking to me, though, because a part of me still fears that I am doing wrong, that I have to be the one in charge of who Nat is.

Every now and then, though, I understand that the truth is, I don’t. When I get happy news from John, who is also his caregiver, I realize that with or without “normal” words, Nat is his own man. I’ll drink to that.


You are an amazing Mother for giving it your best and now allowing your son to be dependent. It is a very difficult situation but you have triumphed and should be proud of the way you handled the situation. I am in awe of you.

— added by Esther on Friday, January 1, 2016 at 7:03 pm

I was just reading an old interview with Burt Bacharach the other day. He had a daughter, Niki, with Asperger’s and he ripped her away from her mother and sent her to a residential school which clearly sounded like the old ABA attitude of…we will force you to comply and be normal no matter what it takes. He regrets the decision to remove her from her familiar and secure surroundings to “normalize” her every day. What he says here sums up why am grateful I never went the residential route with my child.

“They (the daughter and her mother) had a very connected, symbiotic relationship,’ he said, adding, ‘We all did everything we could. I did what I thought would be the right thing and it wasn’t the right thing and I was just trying to get her better.’

Bacharach deeply regrets the painful decision to send her away and he feels she always held that against him.

‘There was always that resentment that I kind of imprisoned her and the last thing in the world you know,’ he said. ‘I wish somebody would have just said, you’re not going to heal her, let her be.’

Burt in his memoir said that Nikki died on January 4, 2007.

— added by JJ on Saturday, January 2, 2016 at 2:22 pm

Hmm.. I’m not sure your intent here, are you commenting on/criticizing the fact that my son went to residential school and now lives on his own in an apartment? I hope not. That would be very unfair and unfounded. I understand that you decided not to go the “residential route,” but each family is different, each residence is different. I love how those people taught Nat how to take care of himself to the greatest degree possible. Additionally — though I wish I did not feel I had to defend myself — when we sent Nat to live at his school (25 mins away from us, so we saw him every weekend), it was also because he was becoming more and more anxious and aggressive. This was a hard decision but I checked it out thoroughly, even made surprise visits, and I felt that the staff at the house would be caring and supportive of him. No “normalizing,” that was not what we wanted. They loved Nat, and we could see that. I’m very sorry for Burt Bachrach and his loss, though, that is devastating. But I would never make a generalization that residential settings are dangerous. I hope that is not what you are doing here. It is up to each parent to check it out and keep checking.

— added by Susan Senator on Saturday, January 2, 2016 at 2:36 pm

You mentioned the spiked lemonade and I remembered a story from a woman with a severely handicapped daughter (child stroke) and how she had a small glass of red wine on her 19th (legal age) and you think…. what would people say… and then you realize the answer is the same as always “my business, not yours”. They are adults. No, you can’t let them get drunk but they can have a drink like everyone else.

Hope he had a great time at the party.

— added by farmwifetwo on Saturday, January 2, 2016 at 2:56 pm

Can’t wait to see him later and ask him! Always interesting to hear his perspective in just a couple of words… 🙂

— added by Susan Senator on Saturday, January 2, 2016 at 3:07 pm

Hi Susan:

No I didn’t mean it like that. A lot of of the residential placements (under age 21/22) is ABA based and they absolutely do put a lot of their energy and “teaching” towards making a child compliant and rigid imo. Your son must have been in a non ABA residential school or one that isn’t as rigid. You’re lucky. Most ABA based school/residential placements are not like that. Also, my child is not aggressive so we prefer to work on these same skills ourselves while giving him the security Bacharach talks about. That’s not always possible with very aggressive kids. I get that.

— added by JJ on Saturday, January 2, 2016 at 3:29 pm

Oh, I’m sorry to have been defensive. Yes, Nat’s was an ABA school and sometimes their rigid dogma drove me crazy, and yet they always hired staff that were so caring and treated Nat like an individual. Way more than 11 years I felt that way, which is a lot for me. The home was less rigid, which is good. The important thing was how humane and appreciative of Nat they all were.

— added by Susan Senator on Saturday, January 2, 2016 at 4:01 pm

Thank you for this Susan! I too feel that Justin will be better served by living independently of us one day (but visiting often!), but I admit I’m anxious about our potential choice, and sometimes there is guilt associated with this decision. Your line about “letting him be who is is” was incredibly helpful as we start to navigate his adult life. Thank you and cannot wait for your book!

— added by kim mccafferty on Monday, January 4, 2016 at 11:37 am

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