Imperfectly Seeking Help

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I’m more likely these days to celebrate Tariku’s triumphs on this blog than I am to explore our day-to-day challenges. I’m not sure why that is. Maybe the successes are just clamoring louder to be written.

But I got an email the other day from a woman parenting a child who also has Sensory Processing Disorder and PTSD. She told me that she had combed this blog for more about our struggles and had only really found the “everything is so much better” stuff. Better than what? What was it like? Please tell me, she asked.

Things are remarkably different now than they were a few years ago; it’s true. But I don’t mean to misrepresent the situation. Here’s a little snapshot:

T rises from his pillow at 5:30 like a hummingbird who has just smoked methamphetamine. That’s how he rolls all day, until we strong-arm him into bed. He wakes up with approximately one-hundred-and-forty-three questions about cloud formations and tornadoes and Cuba and sharks and death and, and, and… He’s extremely bright and curious and hilarious, but will take almost no direction. Whether it’s baking a cake or doing math or playing a piano concerto, he knows how to do it. His favorite word is no, accompanied by an impressive eye-roll. When he gets over-stimulated, he has no sense of his body in space and very little impulse control. He literally climbs the walls. They have the scuff marks to prove it. He wants to be in control of absolutely everything, including the time and the weather. It’s sort of like living with a cross between Iggy Pop and Fidel Castro.

I love every crazy minute of my son; I truly do. Just the other night we were on the bed together and I was reading while he watched TV. He reached over and took my hand. We held hands like that, while doing our own thing, for the longest time. I swear it was one of the sweetest things that’s happened in my entire life. But I don’t want to mislead you into thinking that he suddenly turned into Shirley Temple overnight.

Much of our life is still spent negotiating therapies and school intervention. Most nights I still wake in a panic at 3am, worried for him.

In fact, this morning I was just on the phone with a new counselor, who offers some innovative therapies. I talked to her about T’s trajectory thus far.

“Did you ever try so-and-so pre-school?” she asked.

“No. We heard about it. We thought about it.”

“That’s too bad. It would have been a really good fit. Their forte is working with extremely bright children with social and emotional challenges. Maybe they could still help you with an after school group. I want you to call them.”

“I…I…I don’t remember why we didn’t. It was so confusing at the time,” is all I managed to stammer.

The rest of the conversation was encouraging. We set up an appointment for an intake. I chirped something about so excited to see what the future holds and then hung up.

I put the phone down and sat, staring at the website of the special needs pre-school he didn’t attend. We’re very happy with our school now, but it looked like it would have indeed been perfect a few years ago. And even though I had already loaded on my mascara for the day, I began to weep.

The essential thing I forgot to do. The thing thing that would have helped him. And I missed it. I failed my child.

Which sends me right down the spiral of… at what am I failing right now that I’ll have to answer for at a therapist’s office in three years?

Scott’s guru guitar teacher showed up at the house as I was in the midst of this. I answered the door and actually cried on his shoulder. I barely know the guy.

He asked me tell him what was going on. So I did.

Have I mentioned I barely know this guy?

I can’t imagine what Scott was thinking. It was truly bizarro of me. But sometimes you gotta just be where you are.

“I’m not doing enough,” I sobbed. “I’m doing the wrong things.”

“Are you willing to let that story go? “ he asked me. “Because that’s just a story you’re telling yourself.”

It’s a story I often tell myself. And it’s true I’m usually getting something wrong. It’s true there are plenty of great avenues of help that we’ll never find. But all three of us are seeking help with such hope and dedication. It’s not ever enough, but it’s our best effort. Just look at our little Iggy Pop. He’s learning. He’s making friends. He’s growing all the time. He’s a wild, white-hot ball of pure love. He’s perfect. And I will fail him many times before this gig is up. But that’s just one story. There’s another in which we’re all heroes.

I deeply relate to the desperation and confusion of the woman who wrote me the letter. This isn’t an answer at all. It’s just a story about my morning. But I hope it helps.

On Special Needs…

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When I was stuck in traffic after the camp drop-off this morning, I found myself musing about the day I first heard the words “special needs” applied to T. It seems a lifetime ago. I remember the combination of fear and relief I felt. What would this mean to him? To our lives? How had my life strayed so far from any picture I ever had of motherhood? Some part of me felt like I was betraying him every time I said it, by admitting that he wasn’t perfect. Another part of me was grateful that I had some external validation for my concerns about his behaviors- I hadn’t just been imagining it all along.

Special needs. Say it a few times. See how it feels.

You may feel embarrassed. You may feel like you’re getting benched, not allowed out on the field with these other competitive moms who are humble-bragging at the coffee shop about their six-year-old playing Chopin and speaking Mandarin.

That’s okay. Don’t stop. Say it a few more times.

You may find that it begins to change shape in your mind, to grow roots in your heart. You may recognize it as truth, and truth is almost always a relief. You may begin to feel that rather than benching you, it puts you on exactly the right playing field, where you suddenly understand the game.

Say it a few more times. Say it like its no big deal because it isn’t any more. You will begin to hear an echo.

My kid has special needs, too!

You may find that the echo is coming from people that you’d far rather spend time with than the Mandarin-drilling Tiger Moms anyway. You may find that you’re proud to be among this new group of people, that all you had been waiting for was to feel less alone, and now you do. And while it is not all fixed, you have something better than fixed: you have hope.

These were my traffic thoughts this morning. How remarkably different from three years ago, when I used to drive around literally cursing at God. I am so grateful to the special needs community- the parents, the therapists, the educators, the kids. They have given me a life far richer than the one I imagined, when I first envisioned being a mom.

Our Children

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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.