A Different Beat
Written By Cammie McGovern
No one thinks they'd be good at raising a child with special needs. Until a child becomes your child.
A dear friend, in her first trimester of pregnancy, called in a panic when some early screening tests came back with questionable results. "I know I'd be a terrible special needs mother," she wailed. Strange that she was having this particular panic attack with me, when my oldest son Ethan is an 11-year-old with autism, and her worst-case scenario is basically the story of my life.
I tried to bring the voice of reason: Those tests are always dicey, this baby will probably be fine. I also told her something my prescient mother said when I was having a similar flight of fear during my first pregnancy. "If your baby has problems, you'll deal with it. You'll do what you have to."
What I wanted to tell her is that no one believes they'd be good with a child who has special needs. Presumably one decides to have a baby to put a certain limit on the navel-gazing and solipsism of life before children, but for most people there's a ceiling to their desire for martyrdom. "I'm too selfish," my friend wailed, exactly the sort of thing I once said myself. If I remember correctly, I think I even added, as a stab at sounding open-minded: "I guess I could deal with anything except cognitive issues."
Now that I have a child with special needs — with cognitive issues and more — I've learned that it means years of walking through a world filled with doctors and therapists and what feels for a long time like many closed doors. Everything that other mothers and babies were doing seemed like a trial: Mommy and Me groups, toddler swim lessons, baby gym classes were all an exercise in watching my son withdraw and retreat. It was a long, slow realization that brought with it a surprising measure of relief: He'll never look fine, so why bother trying. With that understanding I began to see what it took me far too long to grasp: This wasn't about what other people thought, or how we looked, or how well he managed to blend into a group of other children his age. This was about him, enriching his world, widening it as far as possible for him.
In the weeks after Ethan was diagnosed, just after his third birthday, I felt as if I'd walked through the only door that felt open at the time — into the world of other parents with special needs kids. And there I found, to my surprise, a group of parents who dwelled not on their misfortune but on the details of their children, a thousand specifics that, once you looked at them, were oddly fascinating. "My son loves drumming," one mother told me. I didn't know her son well; I only knew that he was 18 years old with "multiple issues." He was blind, deaf, and used a wheelchair, certainly a worst-case scenario for many people, but there was also this: With a drum in his lap, he could keep a steady beat, feel music through his feet, and play along accurately. Imagine the feeling his mother had discovering this. For everything he couldn't do, look at what he could.
As it turns out, music is a godsend for many of these kids, an avenue into an otherwise tangled brain. A while back, my own son, who struggles mightily with writing, was trying to spell the word face and did it first by singing, in perfect pitch, the piano notes F-A-C-E. How inefficient, of course. How convoluted. But it also has to be said: How interesting. Since then, he has discovered his own love of drumming and has joined his public elementary school's beginner band, forging a path not only to learning, but, at last, to other kids.
When I made the passing remark years ago suggesting that I could deal with anything but cognitive impairment, I suppose I thought having a child who saw the world in simple terms would quickly grow old. The reality has been the exact opposite: A child with special needs is endlessly interesting. No matter what a doctor tells you to expect, these children follow no prescribed pattern of development, making them in many ways less predictable and more compelling than their typically developing peers. If I'd had a glimpse when I was pregnant of what Ethan's life would be like — how hard it would be sometimes to be his mom, how lonely and frightening — I know I would have wept and said I could never do it, not in a million years. But then the actual child comes, with big green eyes and doughy cheeks and, even as a 3-month-old, a sensitivity to music that makes him stop wailing instantly if he hears a thread of opera. You watch his little face furrow to the music, taking it in like an adult, and you think: This child seems so different, in ways that are both hard and good. And then the face and the particulars simply take over. You couldn't do it in general, but for this child, this one, you can. And you do.
About the Author: Cammie McGovern is the mother of three sons and the author of Eye Contact, a mystery about an autistic boy who witnesses a murder. Ethan, a Bruce Springsteen fan, is planning to invite The Boss to his next birthday.
I agree with the author of this article on so many levels. From feeling like an outsider at typical mommy and me classes or birthday parties, meeting remarkable parents, dwelling on the details of my child, but what hit me the most was the admission that at one time we have all openly admitted that there is NO WAY we could be a good parent to a child with special needs. Well, I will confess I was that person. But MAN has this journey changed me!! I sit here today and can say that I NEED Spencer, so much more than he needs me. I need him to show me the joy in life, to teach me to be strong, to fight for what I believe in, to work hard, take in the "details" of every part of creation, to listen through music not just to music, to show/teach me grace and mercy. This journey has brought me to my knees weeping and asking why me, why Spencer, I can't do this any more! But more often than that, it has brought me to the highest mountain, feeling full of life and close to Christ!
Sometimes there are things we need and we just don't know we need them. I have learned to value and seek out those little things in life that have been put there (because we need them) to show us who our creator really is and that HE is in control.
Have there been or are there things that you have experienced in your life that weren't a lot of fun (or maybe just plain dreadful), but you realized in the end it was something you needed?
Update on Spencer's Treatment
Spoke to Lucas at Thoughtful House last week about our Challenge Test results. I was correct the DMSA didn't do squat. He told us there are a few reasons it didn't pull any metals....1.) he doesn't have any metals to pull, 2.) the DMSA med doesn't work for him, 3.) his body didn't absorb the DMSA suppository correctly.
We can't go with reason #1 because what if it were #2 wrong med or #3 poor absorbtion of suppository. So, we really have 2 options if we want to keep trying Chelation.
Option 1:
We can tray another medication that is also a suppository, which would take care of ruling out the possiblity that (#2) it was the wrong med. However, if we still don't pull metals then we still question whether #1 does he have metals to pull or (#3) is he just not absorbing a suppository.
Option 2:
We can do an IV challenge test using a different med, EDTA. This requires a trip to Austin and is considerably more expensive and invasive for Spencer. But, this is a good option, because we change the medication (#2) and the vehicle in which it is adminstered (#3). Also, If we go this route and there still aren't any metals pulled then we know for sure that there aren't any metals to pull (#1) and chelation isn't a good treatment for Spencer.
Option 1 is a lot easier and cheaper, but I feel like it could be a total waste of money, because if it doesn't work then we go to Option 2 anyway. So, we are going to skip that test and move right to Option 2. We should be making the trip soon. I'm waiting on the appointment and test kits to come and I'm anticipating it will be sometime after Thanksgiving. One of our friends a Spectrum of Hope started IV chelation at Thoughtful House a month ago. They also live in Katy and we have been talking about coordinating our appointments so we can travel together. Should make the trip easier and more enjoyable.
Spencer has been showing signs of yeast again, so we are going to do another round of Diflucan. I'm just praying we don't have the troubling behaviors we had last time. I take peace in knowing they are temporary and that he will feel better when we are all done.
Have to share this....
As you recall from the last entry, Spencer loves to play the drums. His new "thing" is he puts Animusic on the DVD player and gets out his drum and "plays along" with the movie. HILARIOUS!!
Until next time, grace, peace, hope, love and prayers...
T
The King will reply, "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
Matthew 25:40
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