Posts tagged Special Needs

Our Children

tangram

Tariku has finally been getting some targeted help for his sensory integration issues and it’s making a world of difference. It’s taken us years to land on a recipe that has been having some measurable and surprisingly quick results. I say this to give hope to any parents out there who feel like you’re reading every book and taking every class and spending your last dollar and you’re just beating your head against a wall. I’ve had those months. I actually had a pretty solid year-and-a-half like that. But the last biting incident he had at school set into motion a chain of events that led us to a great child development specialist, who sent us to a kick-ass occupational therapist and also helped us find a therapeutic aide for him in the classroom.

One thing I’ve noticed about the professionals who serve the special needs community is that they often refer to the children as “our children,” as a way of distinguishing them from kids who are developing more typically. As in, “It’s sometimes hard for our children handle unexpected touch.” Or, “Our children have a difficult time visually organizing new environments.” Etc.

I find it soothing. It makes me feel less alone and reminds me that children are raised by communities not individuals. We never asked to be a part of this particular community. Who does? Well, some very exceptional adoptive parents I know do, but most of the selfish rest of us don’t wake up and say- wow, I’d really like to go to lots and lots of therapy with my five-year-old until I’m so harried that I need some for myself as well. And yet here we are. What I’ve found is that I’ve met an amazing group of smart, tough, exceptionally compassionate individuals and they have improved not just my son’s life but also mine.

Enjoying a Suck-Ass Day

I recently went out for non-drinks with a pregnant writer friend, who is understandably concerned that motherhood will ruin her life.

Oh, it will, I told her. Everyone’s going to tell you to go see a movie alone or some stupid thing like that. As if balancing a popcorn bucket on your belly for a couple of hours is gonna make up for the fact that life as you know it is just about over.

She looked at me, shocked. Okay, so maybe I could have been a little gentler.

But seriously- I had just had a day, during which I drove from a school conference in Altadena to an occupational therapist in Encino then over to a child development specialist in Sierra Madre then to Trader Joe’s for some special fucking salami and crackers that we can’t possibly live without in this house for five seconds, even though the rest of the stuff we need is at FOUR different other stores. Then I made a stew that nobody liked and they both ate frozen pizzas. The end.

But you’re happier now, right? She continued.

Nope.

Nope, not happier. I was happy when Scott and I went to Japan every ten minutes. I’m exaggerating for effect here- I’m sometimes happier. I’m also more worried, stressed, exhausted, annoyed, et al.

But I am certainly better. I am less selfish. I am stronger. And the world breaks open for me in surprising and transformative ways.

Of COURSE you’re happy spending your days shopping for Hello Kitty barrettes (for yourself) in Harajuku and then writing humorous little blogs for Vanity Fair while eating room service and overlooking snow-blanketed Tokyo from your hotel room. That’s easy.

But what I never would have expected, is that somewhere in between the school conference and the occupational therapist, I was listening to a great Shins song and the car was facing west toward the beach (sometimes it’s enough just to know the ocean is so close) and the afternoon light was buttery gorgeous and this enormous and surprising sense of joy cracked over me.

Because who knew that I ever was this person? That I can show up for my kid and seek help for him and advocate for his needs? I always thought I was selfish and depressed and narcissistic and barely functioning. I guess I still am on some days, but there are other facets to me that I never would have had a chance to see without my son. I prefer to be this person, even when she is less happy than my previous, more carefree incarnation.

And then there is the thing about the giant, heart-expanding, crazy-making, everything-they-ever-said-it-would-be love that comes with motherhood. Happiness is for wusses. I’ll take the love.

Here’s that Shins song I was talking about…. Also- the dog in the video looks just like my dogs!

Gratitude

I was in line at the coffee shop the other day eagerly awaiting my caffeine fix, when I overheard a couple of moms chatting. One of them was describing the behavior of a child in her daughter’s class. The behavior sounded similar to T’s, so of course my ears perked up. The woman said, “Some days being a mom is, like, SO hard, but then I have to remember to be grateful. I mean, I could have a kid with special needs or something.”

I had to fight the impulse to go over to her and say, You should be so lucky to have a kid as kind and loving and remarkable and hilarious as my kid with special needs. What the hell kind of thing is that to be grateful for?

I’ve never been a fan of the sentiment that we should be grateful because there’s always someone worse off. When I was a kid, my father used to say (usually in response to tearful begging for a pair of Guess jeans or tickets to the Like A Virgin tour), “I cried when I had no shoes, until I saw the man who had no feet.” Even then it used to get on my nerves, and not only because I had to get the lame knock-off jeans. I didn’t agree on principle. I don’t want to derive my gratitude from the suffering of others. I don’t want to perk right up because some poor guy doesn’t have feet. What kind of way is that to think?

Not that I’m some Dalai Llama of gratitude. In fact, I woke up today swamped with self-loathing. There wasn’t any particular reason, it’s just my nasty demon rearing its ugly head. I could barely look in the mirror and I just couldn’t shake it. I put on my running shoes anyway, then spent almost every step of my run with my legs feeling like lead, cursing the fact that 4 miles never seems to get any easier.

And then for a few minutes I found myself keeping pace with a burn victim whose scars were so severe that half of his entire body looked like a melted candle. I found myself feeling grateful. But not because, as my dad would put it, I cried when I was mildly depressed and had a fat ass, until I saw the man who had half-a-face. Rather, I felt grateful to all the rest of the souls dragging themselves, fat asses and scars and no shoes and no feet and all, around that track at 6am. Who knows what those people are facing; what kind of heroism I’m witnessing every day without even knowing it.

I thought of the burned man- I’ll just borrow your strength today and I’ll make it the rest of the way around. Some morning when I’m feeling like the wind, I’ll loan my strength to someone else who’s out here limping.