Sunday, November 6, 2011

Warrior Mom

I've been thinking a lot about parenthood lately because my oldest friend (not chronologically oldest, just friendship-length oldest) recently had her first baby, a gorgeous almost 10 pound boy. When you watch other people have kids, especially after you've already gone through it, you get to really enjoy the process and bask in the magnitude of the experience. When I was pregnant with Henry, I was just scared I'd hate motherhood and worried that I'd screw it all up. But when you're watching your friend you get to relish the excitement of those last few days of pregnancy before you meet your new baby. You get to realize the magnitude of entering a hospital without a baby and leaving a few days later with your baby and with a new title for yourself: PARENT.
Thinking of Anna's precious baby makes me think of my own babes and where we are with them. Sammy, bless him, is an angel. Well, not entirely. He's a spitfire, and he's completely wild, and he wants at all times to be hugged, kissed, tickled, and interacted with. I love that about him. He reminds me of myself. Thus far, he seems to be doing well, and we're so happy he's ours.
And Henry is. . .Henry. He's a beautiful, funny, silly, curious three year-old; and, just like Sammy, we're so glad he's our son. I feel a little guilty because with all that's been going on with Henry, it sometimes feels like Sam is lost in the shuffle or along for the ride or some other metaphor for "not getting a lot of attention." But then I remind myself we've only been really dealing with this Henry stuff for about a year, and it (hopefully) won't be this intense forever. Hopefully.
Sometime in the past few months something just clicked over and I realized I'm fighting this label that's been attached to my son: Autism. I realized I've been trying so hard to find ways that he's not autistic, and I've just hoping so hard that he's fine and he'll be a normal, healthy, happy boy and grow out of his delayed speech, and his interest in automatic doors, and his lack of eye-contact. But I realized he's still not progressing in ways we hoped he would progress. He just keeps on being Henry. Sweet, funny, silly, affectionate, cute as can be Henry. But also autistic.
I hate Autism. I hate the word. I hate everything that I've ever associated with it. I hate that it's lifelong and incurable. I hate that it affects nearly every aspect of the lives of a person who's afflicted with it and his family. I hate the possibility, even the notion, that it could have my son, that people at the grocery store wonder what's wrong with him, that other kids might not want to play with him, that acquaintances, friends and family might pity Tripp and me, that we might never have relaxed, easy lives with little planning because Henry might not be able to tolerate that. I fucking HATE it.
But as much as it scares me, and saddens me, and freaks me the hell out, again I'm almost certain it's what Henry's got. Around the time I started accepting it and feeling nearly complete despair, Henry's speech therapist gave me the book, "Overcoming Autism" by Lynn Koegel, a psychologist and speech therapist, and Clarie Lazebenik, a mom of a boy with autism. Sometimes it's amazing to me how the universe works. I really don't know how I would have responded to this book if I'd received even a few weeks earlier. But I got it when I got it, and I started reading it immediately. In short, the book has been, no exaggeration, life changing. In ways that no one else has ever been able to, Dr. Koegel described Henry perfectly, giving examples that could easily have been Henry. But she didn't describe these kids like other books--as sad, hopeless cases who would never have friends, be in mainstream classrooms or get married. She used words like "adorable," "sweet," "friendly," and "easy going"--words that are used for normal (the P.C. term is "typically developing"--eh, whatever) kids. She also respectfully and thoughtfully acknowledged how unbelievably scary and depressing it can be to hear that diagnosis about your child. And Claire! Man, she articulated PERFECTLY everything I've been feeling--the absolute terror, the constant worry/panic, the self-consciousness regarding her kid's differences, the sadness.
Since starting the book, I'm seeing things differently. I think Henry is autistic, but I don't see that as the end of the world. I see that there is hope, and I feel incredibly determined to get him everything he needs so he can create whatever life he wants for himself. In some ways, it's been a relief just to accept it: To me at least, Henry seems like a pretty high-functioning "autist" (Tripp's term) rather than a really weird normal kid.
We finally got an appointment at Kennedy Kreiger, the highly-regarded institute in Baltimore that's supposed to be on the cutting edge of autism diagnostic work and research. I feel like a soldier preparing for battle and I just need to get orders from the colonel (the peeps at KK), and then I'm good to go.
Interestingly (at least to me) since my change in mindset, I've had the sobering realization that people who I assumed thought Henry wasn't autistic were actually just keeping their thoughts to themselves for fear that I would lose it. One friend said, "I didn't think you were ready before, but I'm glad you're going to get a second opinion now because I didn't want you to hear the "A" word and freak out."
So my kid is Autistic. I really hate that, and I would do almost anything to change it if I could. But I can't. So, I'm a soldier. Just like every other mom out there, I love my kids so intensely sometimes it physically hurts. I want every opportunity for them, and I will fight like hell to get them what they need to hopefully live happy, healthy lives. But, shit, it's going to be a lot of work.