Susan's Blog

Thursday, February 14, 2013

A Mother’s Dream

A few days ago, I dreamed Nat could speak– I mean, really talk, not just the hesitant monosyllabic speech he uses. In the dream, I was riding in an elevator with Nat and a pretty blonde woman, in her early forties. She sees him, 23 years old and sucking his thumb, but doesn’t realize he is intellectually disabled. She says flirtatiously, “You must be a movie star to be doing that in public like that.”

I answer for him, as I always do, brusquely defensive and self-righteous: “Actually, he is autistic.” But then – Nat takes out his thumb and says, nonchalantly, as if he could talk all along: “Actually I do come from a long line of theater people.”

I awoke gradually, uncertain that this was a dream, but each moment of dawning clarity brought more pain. It wasn’t just Nat’s talking that blew me away, it was the level of self-awareness and subtlety. I hadn’t realized, after all these years, that I still wanted that so desperately. I think this flicker of desire must have come from a recent decision his doctor had made, to reduce Nat’s medication. I had agreed that we should try this, because Nat has been doing so well for so long. We reduced his meds around a year ago and found that even though he seemed more on edge, he also seemed to be able to answer us more often. And anyway, the goal had never been to have him medicated forever; it was just supposed to have been a “buffer” against aggression that started 13 years ago. I can never forget that horrible afternoon when he was 10 and he attacked me in the subway station, simply because we were going a different way home. I struggled to fend off his clawing hands while keeping hold of his baby brother and the stroller at the same time. I was desperate to calm him, to soothe him. Events like that became common, so we turned to serious neuroleptic medication to help him.

While the decision to medicate made sense back then, I have learned over time that so much of parenting Nat has been about a kind of letting go, of hanging back to see what could happen. After all, we learned how well he could ride a bike because we (accidentally) let him ride off around the block, out of our view. In a mixture of choking fear for what might happen, and a small soft certainty that he’d be okay, we ran after him, knowing we could not overtake him. We had to wait, hearts in our mouths, for his safe return around the corner. We didn’t really know for certain he could do it safely – and yet, didn’t we? Somehow, it was okay. He came barreling down the hill towards us with a devious smile that seemed to say, “I told you so.”

Taking Nat off his meds is a slower danger than a bike accident, but almost as much is at stake. Nat is living away from us, in a house with roommates and staff, taking care of himself in so many ways. He routinely makes meals, cleans, and decides how to spend his leisure time. He plays on a basketball team, and he works three days a week at a supermarket. I do not want to see this jeopardized by a return to outbursts and aggressive behavior. He could stand to lose so much. I dread the phone call from his day program or from the house staff, like what I used to get during his middle school days: “There’s been an incident…” It’s been peaceful for so long.

The fact is, though, that a less sedate Nat could mean a more alive Nat — alive in every sense of the word. He will likely feel more anxious simply because he will be more aware. He will experience noise and sensation more acutely. And yet, with some of that comforting haze lifted, he may see things more clearly. He might understand more. Isn’t it his right, as a human being, to take this chance?

I guess, in this season of audacious hope, I feel my own sort of optimism: that maybe Nat at 23 can indeed handle a new, raw but heightened perception. Maybe with greater perception will come better communication, a stronger connection to the world, and all that it brings – delightful or frightening. Because parents will do anything to help their children grow. Mine is a mother’s dearest hope; I have a mother’s dream.


Susan, I really love reading your blogs. Even we don’t really know one
another, we share a common bond of parenting a child with severe autism.

— added by Sonja Bingen on Thursday, February 14, 2013 at 7:43 am

Maybe with puberty being over with he won’t need the meds to regulate his moods. That was what we were told by the child psych. All I know is that we hit puberty with a crash and a slam… he now controls his thoughts but he’s not drugged nor an angel but atleast he can function.

— added by farmwifetwo on Thursday, February 14, 2013 at 12:11 pm

It’s funny the dreams we have about our children. I mean dreams in the most literal way.
I had a dream once that my (mostly) non verbal autistic 4 year old son was having a tantrum and was screaming “I hate you. I hate you. I hate you.”
And in the dream, all I could think of was “wow, what a great sentence.” I didn’t even think about how odd that was until I woke up.

When I was pregnant with my oldest (the now 4 year old) I had tons of dreams every night of what he would like when he was older, even what he would be like as an adult. When I was pregnant again recently, I didn’t dream about the baby at all. Maybe it was b/c I was grappling with the autism diagnosis for the older one at the time, but I think part of it was just that being a parent (to any child) teaches you so much about the uncertainty you are dealing with. They are going to be their own unique people and you can’t anticipate too much of that, for better or worse.

Fingers crossed that everything works out well for Nat.

— added by Jill Q on Thursday, February 14, 2013 at 3:11 pm

Oh, how I devour every word you write! I so get the worry over coming off meds. My 10 year old was on so many meds and just spent 8 weeks at Childrens Hospital coming off of them. He is still on a small dose of Zyprexa. His language has exploded! We are stunned when we hear the things he’s saying. Never even knew he had some of these thoughts in his head! It is awesome and we are soaking up every word. But again we have the worry about the aggression coming back.

— added by Amy on Thursday, February 14, 2013 at 9:24 pm

I have that dream too with my severe kid, but in it he’s always talking to his little brother, which I know is my mind’s way of making a longed-for goal come true. We debate often here about his levels of meds, and I find the “what-ifs” are often more difficult for me than what actually happens. As always, lovely post, and thanks for continuing to write about topics that include aggression and autism. It helps me to know other parents have gone through those phases and come out of it alive!

— added by kim mccafferty on Friday, February 15, 2013 at 11:23 am