So, alright. What do I specialize in? Well, nothing really - not per se. But one area I'm trying to gain knowledge in (and share knowledge with others about) has to do with my child. I'm not talking about your usual "mommy-blogging" where upper-middle class, stay at home moms do kitschy crafts with their kids, all the while having their DSLR cameras super glued around their necks. You'd probably have to hold a gun to my head to make me read most of those blogs. I've changed enough diapers to know that there's nothing particularly special about it, and unfortunately no cheery/classy/understated Wordpress background is going to convince me otherwise.
What's different about my kid is that he's, well, different. And according to half a dozen specialists scattered throughout the state of Maine, we're not talking about "good" different. We're talking about missing-chromosome-parts-may-never-speak-learning-disabled-look-out-for-seizures different. He also has webbed toes, which he gets from me, although I had no idea that I even had webbed fingers and toes until his geneticist saw me in sandals last summer. It can be pretty depressing at times (and not just about my webbed toes).
I found most of this out about a year ago. My son had a big evaluation because his speech therapists had kicked him out of their practice because he wasn't making enough progress, and obviously since he wasn't speaking he had Autism, because God and Jenny McCarthy both know that any time a 2.5 year old isn't speaking it's the Autism. I didn't believe he had Autism, but the therapists were correct in observing that he wasn't improving and either way they were discharging him. I didn't even know it was possible to discharge a kid for not improving; I thought they'd, you know, work with him until they'd helped him? Like they were being paid to do? Naturally, I was not pleased with the situation and decided to seek medical advice elsewhere, which led us to the evaluation.
The evaluation team diagnosed his speech problem (apraxia) within about twenty minutes of us being at the appointment, and each subsequent doctor we saw that day made it clearer to me that he was not autistic. Woo hoo, I thought, case closed! We were gonna get us some new speech therapists and be on our way, thank you very much!
Not so much.
When the hospital mailed me the official report, listing all of their diagnoses, I ripped into the envelope to see a lab form. No one had mentioned any lab work to me, so I was kind of perplexed. Reading through the report, a developmental pediatrician had decided my son needed blood tests to see if he had any genetic problems, due to his dysmorphological features. My son has always been abnormally cute, but in no way did I think that was indicative of a medical problem, just the result of having attractive parents (although his dad is now getting haggard-looking in his old age...).
Maybe it's due to my young age, or perhaps I'm just naive by nature, but I'd always assumed that medicine - doctors, medical tests, extensive research - was supposed to give its patients answers. Instead, I was given a chart outlining my son's 16th chromosome, with a blown up portion (imagine a weather map of the US, where Hawaii is blown up to look large when it's really teeny-tiny compared to the other states) showing some missing genes. Where the genes were supposed to be, there was instead a helpfully highlighted line that said, "Pre-disposed to Autism and mental retardation."
When you're pregnant, or when your infant is napping peacefully, and you're trying to decide whether he should be a lawyer or an underwear model, the thought doesn't usually cross your mind that your kid could be mentally retarded (actually, that doctor should probably update her lingo, as the PC term is now "intellectually disabled"). But there I was, my three-year-old playing with trains in the waiting room, being told that even if he wasn't legitimately intellectually disabled that he would certainly have learning disabilities.
"Well, if this is genetic, and probably inherited from me or his dad, well, neither of us have learning disabilities, so..."
"No," the geneticist (or maybe the genetic counselor, who knows) said slowly. "The research shows that everyone examined with this chromosome deletion has some degree of learning disabilites."
"Well, couldn't it be that only the people who are learning disabled are getting this testing done, and therefore other people could be walking around with the same deletion but living normal lives? So people aren't getting genetic testing done unless they're having secondary symptoms?"
The worst part about that doctor's visit was that I was told there was basically nothing we could do to correct the situation. I thought they were going to have some answers for me; this deletion has caused X, Y and Z, and now we're going to prescribe him a special diet/pump him full of stem cells/give him some antibiotics and everything will be all good in the hood. Instead I got: treat his secondary symptoms as they come, look out for seizures and make sure they save him a seat in the yellow section (fellow Skowhegan grads will know what I mean there).
This, I guess, is where the story shifts gears. (Had to provide the back story, you know?) I am sort of psychotic, and as such I surround myself with equally psychotic people. I think they each add texture to the fabric of my (and my son's) lives, and the ways they've dealt with his medical issues have helped me create a multi-faceted approach to things.
I am a planner and a researcher. If the doctors didn't have answers for me, I would go somewhere that would: Google. I've read abstracts, I've joined listservs and Facebook groups, bought books, DVDs, nutritional supplements. Nothing has been particularly uplifting, but seeing what other families are going through has made me realize that having a child who doesn't speak isn't even on the same level as what some of these families are experiencing. When I get that pang as I see my 2 year old niece progressing more quickly and able to do more things physically than my almost 4 year old, I'm reminded of such-and-such on Chromosome Deletion Outreach listserv who's child just had a trach inserted, or of the child on the apraxia site who wasn't even diagnosed until age 9 and is trying to make up for lost time.
My parents try not to acknowledge my son's differences. I wouldn't call it denial, because there's really no denying that there's something wrong with my son. Their attitudes are great in a way, though, because they see their grandson first, and allow him to be a spoiled, bratty child instead of making everything into extra therapy time.
When I told my best friend that the doctor had said he'd be learning disabled, she said, "When I think of someone with a learning disability, I think of a kid who needs extra practice to learn multiplication." Simplistic, yes, but for all anyone knows that could be what we're up against here, not some dire disabilities.
Here's the part where I educate my readers (like all 1 of you who've stuck with me thus far).
Doctors cannot be too optimistic, because it's better to be prepared for the worst than to foolishly believe you'll be that 1-in-a-million to beat the odds. I'm sure that most doctors are very happy if their patients do overcome seemingly insurmountable odds, but it would be unrealistic for doctors to expect positive outcomes for all of their patients. So when a doctor tells me that my kid won't do something, I keep it in mind that he may not be able to do it, prepare myself for that possibility and for what our options will be at that point, but I seriously do believe that there's always a chance he could do it anyway.
That brings me to the next important piece of parenting a special needs kid - be prepared to advocate for your child. You will be up against brisk doctors, therapists who think they graduated at the top of the Harvard University School of Knowing Everything on the Planet, ignorant relatives (and ignorant friends, acquaintances and strangers), cheapskate insurance companies, hospital policies and the list goes on and on. It's like fighting Chuck Norris with an army of zombified Steven Segals. It's not easy or fun, but it needs to be done lest your child be denied services or otherwise belittled. Even people whose children are "typical" should do this, because I imagine we all have those moments when someone snaps at our children and although we feel they've acted inappropriately we don't want to start a confrontation or undermine another adult in front of said child. In general, I don't think people do things just to be mean, I think they don't know any better. So do the world a favor and put them in their places and teach them a little thing called "tact."
Also, you, the parent, will be put under a fine-toothed comb. There will be psychologists, psychiatrists, social workers, third-party case workers, along with doctors and therapists, who will question every move you make. You will find yourself explaining your choices over and over again. And not just medical choices - everything in your life is going to be questioned. Does it really matter whether or not I've had any live-in boyfriends during my child's life, or whether I was popular in high school or what the issues in my marriage were? The scrutiny is very stressful. Of course it matters, because we all know children who supposedly have every issue ever cited in medical literature, whose real problem is that their parent is a certified whackjob who dreams of collecting Social Security Disability from their children. But for the rest of us (me at least), it's difficult to have your entire life story up for discussion.
My final piece of advice, as my son is climbing on me whining, "Mama, dwiiiiink," is that you need to separate the child from the disability. You don't have an autistic son or a nonverbal daughter - your child had an identity before they were diagnosed with a disability, even if they were diagnosed while in utero. There's a notable difference between that and having a child who happens to have whatever disability. Put the child first. My life became much easier once I learned to make that distinction. It allows the child to be his or herself and it lets the parent put that space between the child and their issues. Naturally there are times when you have to be the mama-bear, but most of the rest of the time should be focused on your child and developing their personality and their skills.
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