Do Ya Do Ya Do Ya Wanna Dance?

Was that really Noah in the midst of a crowd of disabled peers this evening, dancing in the commons area of his high school? It didn't seem possible. After all, the space was crowded AND noisy, two no-nos in my autistic son's world. But maybe this is part of some larger transformation; maybe this is Noah practicing being social because he wants to be. All I know is, my husband and I were chatting for a few minutes with a school aide, and when we turned to look around for him, there was our son, the redheaded beanpole, right in the mix of things, with a big smile on his face. Amazing to see. Freeze the image in my brain, and beat a hasty retreat. Parents were not invited to stay. And rightly so. This was a night for the teens to party. Disabled or not, anyone can wanna dance.

Flotsam and Jetsam

It's not very nice of me, I know, but when I went inside the teen lounge at the JCC on Saturday night to pick Noah up, I couldn't help but think of the kids there as the "flotsam and jetsam" of the teen world. These were the misfits, the socially awkward, the physically gawky. And my child was among them.

There's no shame in that, but there is indeed a good measure of sorrow. It's hard for me not to see a group of teens and young adults such as these and think of words like 'discards' and 'remainder.' Not kind on my part, but at least honest, if that's worth anything. And it didn't help that as I slipped past folks milling outside the lounge's door to find my son, I saw him slumped on a couch, with a look on his face that seemed both pained and sad. Had he been crying, I wondered.

As I got closer, Noah's face seemed to brighten, and I realized that the outline of sorrow I thought I'd seen at a distance either hadn't been there, or had vanished. But what I saw instead was even more disturbing. Noah sat in the middle, on a cheap vinyl coach, and to his right sat another teen, slumped even lower than Noah had been. To Noah's right sat two teens fairly passionately kissing. Just great. I sent my disabled, highly communicatively impaired child to a program that allows other impaired teens to probe the inside of each other's mouths and god knows what else, inches away from other impaired teens. And where the hell were the staff? Is this being encouraged as "typical" behavior?

Don't get me wrong; I don't begrudge disabled teens their hormonal impulses, but these are not kids who necessarily know what's appropriate, or where boundaries are to be drawn. Maybe it sounds like a loony leap, but I immediately wondered whether those teens--or others in the program--had been groping one another. Or if they'd groped my son. That would be my son whose default is to be cooperative and kind, and even when I know he's been miserable, to say that he had fun.

I can't give the staff a pass on this. I can't chalk it up to the chaos of dismissal. I don't send my child out of the house to a staff-monitored program for him to be in a place in which groping, kissing, fondling and the like go unnoticed, unremarked upon. This is just one more way to remind me that the only people who can or will ever protect my son are the people who know him best, and love and care about him most.

Maybe Noah is part of the flotsam and jetsam of disabled teen-dom, but he still deserves caring, concern, and protection. Maybe it's precisely because he's part of this motley crew of young adults that he deserves all that in greater doses and higher concentrations than do other youth.

That Telltale Smile

She asked for her mommy as she got on the lift. Her dad told her that mommy would meet them later. We rode up quietly together, just the four of us. I always love watching fathers with their daughters, especially when the interaction is so sweet and loving. I didn't notice, until she was getting off the lift, that this little girl has Down's Syndrome. I wanted to say something to her father, to tell him how touched I was to see him with his daughter. I knew it would come out the wrong way, so I said nothing.

As I watched father and daughter ski off, with dad holding his poles horizontally in front of him so his daughter could hold onto and be guided by them, I just thought that we've got it so wrong. We follow the burps and tweets of every version of idiot on the planet, but we too often fail to notice the true giants among us, the everyday heros. Here was a parent not outsourcing his job, not abandoning ship, not making excuses. Here was a dad having a day out with his daughter, just the two of them skiing.

Of course I've no idea what the back story is here. Maybe there's something not so heroic in this family's history. If so, that would just make them like the rest of us. But parents like him deserve a shout-out. Yes, I've got a horse in this race, but it's just true that it's harder to be the parent of a special needs child. And hell, it's harder to be the siblings, too.

I know more heros than I ever thought I would, people whose generosity and tenacity in just getting through another day leaves me in awe of them. There are Elizabeth, Diane and Jane, all raising kids with personalities rocked be emotional instability. There's Laurie, who smiles through the toughest days, and whose stories about sun-up runs to the donut shop always make me laugh.

There are the people whose names I don't know, like the mom who walked behind her son as he wheeled himself into the adaptive center for his day on the slopes. There was Taylor, a local boy who slurred his words and told my son, "I remember you, NG." And then he invited us to watch him sing in his school musical.

I watch my own husband with our kids and I think: "Never was born--or will be born--a man who gives more of himself to his kids." On his worst day, he's a better man and father than most.

That father and daughter on that ski run reminded me of how all the therapy, expertise and advice in the world can't begin to stack up against the only thing that ever matters to kids, and ever will. A parent's unconditional love and acceptance.

The Joke's On...Me?

So yesterday, Noah says to me, "Why is six afraid of seven?" I wasn't sure what he was getting at. Was it a real question? Slight pause, and then it occurred to me that this might be a joke. "What, Noah?" "Why is six afraid of seven?" "I don't know, Noah. Why is six afraid of seven?" "Because seven eight nine." "That's really funny, Noah." "Ha. Ha. Ha," came Noah's reply. Followed immediately by "I don't get it." Noah. In a nutshell.

Do You Wanna Dance, Hold My Hand

I thought it was a good omen that we found parking right near the hotel. We entered the small, smartly appointed lobby and could already hear the music. Noah looked so sharp in his navy blue suit and pale blue button down shirt. I opened the door to the "party lobby" and immediately bumped into a small group of Noah's classmates--present and former. "Hi Noah. Do you remember my name?" "Noah, say hello to Ethan," I prompted. Ethan took Noah under wing and escorted him into the party room. My gratitude knew no bounds.

I followed behind, standing at the edge of the room, hoping that would be my perch for the night. But there was just too much going on for Noah. Too many people, too many colors, too much loud music. He left the room repeatedly, like some kind of toy that keeps bobbing to the surface when you try to push it back down. I couldn't blame him, but I desperately--maybe too desperately?--wanted him to keep trying.

Then Jolie found Noah. I don't know if Jolie just has a sweet crush on Noah, or if she simply likes him so much as a friend that she can't help but try to include him. "Do you want to dance, Noah? Will you take a picture with me?" On and off the photo line with Noah, Jolie kept trying. I lost count of the number of times he left that photo line--and the party room. But Jolie never gave up. And I kept pushing Noah back inside. Mostly figuratively, but sometimes literally. "You won't have popcorn after the party unless you dance with Jolie," I warned.

God, it seems almost cruel to manipulate a child like that. No, correction. It seems cruel to manipulate a fourteen year old like that. But Noah has no friends who come calling after school. There are volunteers who come to the house; not the same thing. I just don't want this flame of interest among his peers to go out. At least not as long as I can help keep it going.

Jolie and Noah finally had their picture taken and before we left, I asked Jolie if she could bring Noah's copy to school on Monday, since we weren't going to make it to anywhere near the end of the party. I also made sure Noah signed the party book for Elena. "Elena looks like a princess. Love, Noah Gold." Several kids came by to read what other kids had written to Elena. When they got to Noah's tribute, I heard a collective "Aww."

My heart, as usual, found itself in a couple of different places that Saturday night. It was lodged firmly in my chest, but it migrated to my throat now and again. It's tiring, inspiring, overwhelming and dispriting--often at the same time--to be with Noah, and to try to get Noah to be with his peers. It's just not an option to stop trying.

The Parent-Teacher Conference to Cry For

I think it's important to keep children's confidences, so I won't go into revealing detail here, but it seems important for me to record and remember (details for my off-line journal) the conference we just had with my daughter's fourth grade teacher.

I'm used to conferences in which the teacher goes through test scores, shows you some work, mumbles something nice about your child (hopefully) and thanks you for coming. This was not that conference. The first thing out of the teacher's mouth--after apologizing for the fact that we waited an hour to meet with her--was "I think she's great." (It's worth noting here that Ariel was with us.)

We then went on to discuss struggles with math, and what might be self-defeating there in Ariel's thought patterns and behaviors. But it was the second part of the conversation that had me nearly in tears. That's not because the teacher said anything unkind. It was simply because sitting next to your child while she dissects her social struggles with a precision and insight that is both stark and stunningly true, is incredibly hard to do.

I was enormously proud of Ariel for being able to be so honest about herself, while also pointing out the ways in which other children have at times been unkind and/or unforgiving. I don't know whether my tears were born of sorrow or pride, but I just kept thinking: "I don't have one 'normal' child. I don't have one 'normal' child."

It might have been the lateness of the hour (our meeting started at 9p.m.), so perhaps my feelings were filtered through fatigue. I can't say for sure. But I was so moved by Ariel, so in awe of her poise in talking about a subject that has to be difficult. And to do it with your teacher and parents there together. Wow. More than that: after articulating so well how she perceives her own challenges as well as the responses of others to her, Ariel made a point of telling her teacher, without a touch of irony, that this has been her best year in school so far, and that she loves school.

I could have eaten my daughter up at the moment. But we had come to the conference from Haagen Dasz, where we celebrated Ariel's birthday over sundaes and ice cream cones. I didn't have room for one more bite, even of my delicious daughter.

War, Glorious War!!!

Dear President Obama,
When you address the nation tonight, consider dropping a real bomb on the American people. Tell us that even though we cannot win in Afghanistan, it would be immoral and unjust to continue to fight this war on the backs of an all-volunteer army. Therefore, you are initiating an immediate draft. A war we were told was meant to protect and defend ALL Americans, should be fought by all Americans. Enough of 5, 6, 7 and 8 tours for some, and going to the mall for the rest of us. Be really brave, Mr. President. Show the courage your predecessor and his army of armchair advisor-warriors lacked. Stop pretending that war isn't a hideous perversion, and that these wars aren't destroying us as a nation. Tell us the truth, Mr. President. Even if you don't get re-elected, you will have done your nation a great service.
Respectfully,
Nina B. Mogilnik