Susan's Blog

Monday, September 7, 2009

Family Tides

We just got back from a mini-vacation on the Cape; it was our goodbye to summer. And what a goodbye it was. Aside from bathing in the ocean and the sharp golden light of approaching autumn, we were also immersed in one another. My family has swollen to six at times, because Nat is with us on weekends and Hannah, Max’s girlfriend, is here perhaps even more often. I don’t think people should be careful of what they wish for: I had wanted a fourth child for the longest time, maybe a girl, and now — !

So we spent three days playing all together. I took 15-mile bike rides to the same old places — bay, marsh, pond, woods, ocean, dunes — feeling as excited about their familiarity as I had about Paris’ unfamiliarity the month before. One morning I took Nat on a bike ride that was just a 1 1/2 mile loop, short because he seems to get anxious when we go for too long on the bike. His self-talk changes when he gets anxious; he inserts a few hums that sound more neurotypical than his usual Nat words, but you can feel the anxiety in their breathiness. So I don’t push him too far, although he really rides well and I think he could — and will — do more at some point.

At my request, Nat’s teacher had made a small laminated booklet of “Beach rules” for Nat, reminding him of things like others’ personal space, and how to walk quietly around the beach. The last year has felt like a boom time for Nat, a time to learn, to try new things. So I did try periodically to remind him of quieter beach talk and I also reined him in when he got too close to others’ blankets. Ben took his cues from me and tried just as hard to pull Nat back, perhaps with a bit more zeal than I would have liked. A lot of Ben’s former anger resurfaced on this vacation, but it was mostly appropriate and controlled. He would say to me, with glowing eyes, things like how embarrassing it is, how Nat just doesn’t learn, how we should tell him this or that. I listened a lot, and found myself agreeing with him at times: “Yeah, I know! I wish he would learn that. I think he will some day.” Ben would disagree, and then I would point out the things that Nat has learned in just the last year. I would also tell him, “Ben, you know, autism is really hard. Sometimes it is horrible. I know that. I know that you have a lot more to deal with than other kids your age, and I am sorry for that.” For this is as true as my love and respect for Nat. Both things exist in one family, in one heart.

I felt my breathing become lighter as I said this to Ben. I found that validating him was not only something he needed but something I needed as well. A few days later Ben even joked about how he feels about Nat. When he couldn’t find his watch he said, “Someone must have taken it.” I asked him if he meant Nat. He said, grinning, “Nah, but it would be awesome to blame him and have him really have done it!”

Ben seems especially bothered by Nat’s issues with privacy, that is, masturbation. Ben hates the whole pillow thing and talks about it with disgust. Again, I can’t blame him. I have to balance Nat’s needs and dignity with Ben’s — and society’s — boundaries. And with safety. I am the eternal juggler. But I’m a mom; it’s my job. So just the other day, when it was rather clear what Nat was thinking of doing for the next few minutes, just before I reminded him to do that in his room with the door closed, I also handed him a piece of paper towel and said, “Nat, use this, not a pillow.” I explained it a little bit, very matter-of-factly. Ned shrugged, not sure that this would have any affect on Nat. And I felt bad about Nat’s business being discussed, and that this was done in front of Ben — a pre-teen with a very large sense of shame — but then again, our family is unusual, I just got finished telling Ben that. What else am I supposed to do, if I want to teach Nat sanitary and safe behavior, in the moment, when it will make sense to him? What are my choices here? Bad, either way. But the lesser of two evils is for me to try very very hard to correct Nat’s bad habit of pillow-use. I have to think of Nat’s safety out in the world, do you understand???

I think it is going to improve one of these days because Nat, too, seems very conscious of privacy. Anytime his hands start moving down to his lap he looks to see if I’m watching. His eyes widen if I am. Then I say, firmly but quietly, “Nat, do that in your room with the door closed.” I do this every time. And either he stops or he goes to his room. He is very aware. I feel like it is only a matter of time before it all clicks and becomes a new habit, just like when he was five and always, always pooped in his pants standing by the window, even though he knew how to use the toilet! I even tried moving the potty to that window. Nothing worked until we went to Disneyworld and I showed him the toilet and said, “This is where you will poop, and when you do you will get a Cadbury creme egg,” and I showed him the egg. And he went right away and pooped in that toilet.

It is quite the conundrum, trying to be a champion for Nat’s rights, and Ben’s rights, while at the same time, having to deal with these problems that are usually so private. I am just doing my best, though it feels like I’m in a cave without a flashlight at times.

Happily, there are organizations that exist solely to promote understanding and awareness of autistics’ rights — and information that can help. Autism National Committee is one of them. On their website they describe themselves as “The only autism advocacy organization dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. Our organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.” Their conference is September 25th-26th in Nashua, New Hampshire. I feel very hopeful that truly humane and helpful solutions for families like mine are on the way.

In the meantime, I am treading water, holding my sons up while the waves crash around our heads and the rocks are tossed about our feet, trying to teach them how to hold themselves up in the surf, and also trying to have a little fun myself.


Susan, what a super mom you are, to all your boys! You handled Nat's issue and Ben's feelings with dignity and sensitivity to both. A lot of people would have shied away and tried to "ignore" the problem, but you didn't flinch. I have so much admiration for you.

— added by Laura in L.A. on Tuesday, September 8, 2009 at 3:02 pm

Basically what Laura said! You are Supermom!

— added by Donna on Wednesday, September 9, 2009 at 9:33 am

I concur. Consistency and a calm, steady voice have served you and your family well. Lisa

— added by Anonymous on Thursday, September 10, 2009 at 10:34 am