Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Monday, May 15, 2017
Girlfriend's Guide to Autism Freakouts, or I Hate Change, Part 2
When I was pregnant with Alex, my favorite book was The Girlfriend's Guide to Pregnancy by Vicki Iovine. It was perfect: funny and helpful. When Alex was diagnosed with ASD, I joked to an editor friend that I should write The Girlfriend's Guide to Autism. She took me seriously. I'm still not sure.
Anyway, here are a few common statements and my interpretations:
Authority Figure: (doctor, therapist, teacher, case manager, or other helpful creature): Your child suffers from moderate autism. (Actually, now it's more helpful to say ASD since he has AD/HD and ODD as well. Just throw them all in the basket, which is another way of saying co-morbid.)
Me: It's the end of the world. This is the worse thing that could happen (again, apologies for my friends who've lost children or watched their child suffer from something horrible like CF). I am never going to recover. My life is over. It's all my fault. Schedule the divorce now (special needs kids are very hard on marriages). I will never be able to take my child anywhere. This next child is going to be exactly the same (remember, I was about halfway with Miranda when Alex was diagnosed).
Perspective: You notice how almost all of my statements are about me? Alex is the one with the diagnosis here and Miranda is just trying to gestate. I think what was the most terrifying at this point was the NECESSITY of change. Alex needed a lot more and we were going to have to be a part of that. And most parents, barring a few extraordinary exceptions, feel like they're doing just fine with a kid not even three and recoil from the REQUIREMENT that you CHANGE your behavior and perspective to help your child change his. You don't know what to do because you are not a certified therapist or special educator and you're going to have to learn.
[Sidebar: when I was in college, I was a certified snob that kinda looked down on my peers training to be teachers, especially those focusing in special education. I was so much cooler than that. NOT! Now, teachers and therapists and case managers are my best friends. I love them. I owe them debts beyond anything you can dream up. They have saved me so many times, I've lost count. I have not forgotten their names, though. I still pray for them. I still say blessings over them. I still send them presents and cards.]
Perspective, continued: I was a smart kid. I excelled in school. I was an excellent office manager before Alex came along. I read parenting books and consulted friends who were mommies ahead of me. I was expecting to be able to cope with whatever kid came along.
All parents in the room together: HA!
More Perspective: All I knew about autism I'd read in a New Yorker article which had scared the hell out of me but did not offer a whole lot of helpful advice other than "Don't have any more kids after you have one with autism!" which is exceptionally helpful when you're already pregnant. Not. But I was about to meet some really good teachers.
*********Insert helpful husband who, after scheduling evaluation with Early Intervention, schedules meeting with our new Case Manager, who was such a delight I asked for her again when Miranda went through IE 2 years later. Soon to be Beloved Case Manager (I can go look up her name; I still have the binders) tells us we have 3 hours a week with Melissa and one with Emily and they will be coming at these times. And between the Federal Government and the State, we will be paying pennies on the dollar for these hours of therapy. Unfortunately, now helpful husband goes back to work because we would like to keep eating and going to the gynecologist. At least, I would.***********
Authority Figure: Now, you have your diagnosis from a certified brain (in NJ, it's a neurologist or a developmental pediatrician that's required to start the paperwork). You've done your evaluation (we know just how bad things are), you have a treatment plan and your therapists have been selected and scheduled. Now, move forward.
Me: What do you mean, move forward? Where? I don't understand the treatment plan. I don't remember being conscious for the meeting when I signed the treatment plan. Who are these people who have to come to my house 4 times a week? What am I going to do with them? Do I have to clean up for them? (I should probably not be throwing up while they are here. Thank you, God, for my doctors and my Zofran.) How am I going to know what to do?
What if it doesn't work?
What if I do it wrong?
What if it gets worse?
Perspective: There is a kind of humility that comes from desperation. Alex had been diagnosed relatively late for his level of developmental delay so we were told to throw ourselves into Early Intervention with all our might because the earlier the therapy comes, the better the outcome.
[Sidebar: The problem with encouraging parents to approach therapy "enthusiastically" is that it turns EVERYTHING into therapy. And you feel guilty if you are not "doing therapy" every minute of every day that the child is awake. And then spending your evenings reading all the books and websites and becoming subject matter experts. Or certified therapists yourselves. Seriously guilty. This is probably why some marriages fail; you forget about each other when all you can see is the diagnosis.]
Perspective continued: So, Marshall went to work and I began to be trained to be Alex's full time therapist. Because that's why the therapists are there: to train you. And it was then my job to train Marshall and everyone else who came through Alex's life.
Insert whining: But I am NOT a special education therapist! I shouldn't have to do this! Why Me?! Why can't I have a neurotypical child like all of my other friends? (Note: many of my friends have neurotypical children, but not all.)
More Perspective: Because I am the mom. I chose to quit my job and stay home with Alex, the child we intentionally brought into the world. And we get the child God sends.
Insert Angels: So my new best friend's name is Melissa and she's wonderful with Alex, although he doesn't always like her because she makes him work and learn and do things he'd prefer to avoid. Emily is also excellent, but because we only see her once a week, we don't bond as closely. But best of all, (now I start crying again), she teaches me in such a gentle, compassionate way how to help Alex. What areas to focus on and what to let be for now. She encourages me more than most people I've ever met and I start to have moments when I don't feel like my world is ending, that I might actually survive my pregnancy (which is as far as I can see at the moment). I start to change how I approach Alex, how to talk to him in calm, measured tones; how to suppress my emotions when he's upset because it just feeds his fury and frustration. And I become a lot more aware of the suffering of others.
Flash bulb! I am not the center of the universe. Selfishness is not a healthy attitude for me or anyone around me.
But, I realize now, I was just papering over my bleeding heart in the name of moving forward and helping Alex and having Miranda and trying not to let my grief drown my husband who has his own perfectly awful grief. This was triage, which was necessary; so we kept going.
Posted by Sarah Boyle Webber at 8:18 PM
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