Archive for June, 2008
The first winter of C’s life, his pediatrician recommended a vaccine for the RSV virus. RSV is a common cold virus that can be dangerous for preemies because their lungs are often compromised. In order to receive the vaccine, a baby has to qualify based on how many days they were on a ventilator, how early they were, how sick they were, etc. There is only one company that makes the vaccine, and there is a very limited amount produced. Every year, each doctor has to cull their patient lists and decide who gets the vaccine.
The summer he was just over one, C contracted an RSV-like virus, and nearly had to go back on a ventilator because he was so ill. We were on the phone with the doctor’s office, at times hourly, monitoring how he was doing. We were in the doctor’s office several times a day checking blood oxygen levels to make sure C was breathing well on his own. Because he was so ill that summer, he was on the list to receive the vaccines during his second winter as well, which is fairly unusual.
The synagis vaccine is given monthly during the winter months; where we lived, the winters are extraordinarily long, and the shots are given from early October until late May. They split the doses and the amount increases by weight, and by the time C was starting his second year of the shots, he was getting 4 shots each time we went to the doctor’s office.
Additionally, the vaccine costs an enormous amount of money. They do, however, top out an an upper amount. We topped out near the end of the first year and for all of the second year at that upper amount, which was $3,750 per month. Per month. Thankfully, insurance covered all of that amount, but I wondered endlessly about children whose families could not afford them, whose lives, like C’s, perhaps depended on those shots.
It’s no wonder that for a good 18 months after stopping the shots, he would scream every time we entered the doctor’s office. It’s taken years to get to the point where he would allow even the most cursory of exams by a doctor. Several times, when getting bloodwork done, it took 6 techs to make it happen. They rarely believed me when we came in; C is small and he appears mild-mannered. But they learned the hard way.
Now bloodwork is eased by a numbing creme I put on his arm an hour before we go. In the back of my mind I wonder if this is smart; shouldn’t kids learn that sometimes there’s pain in life? Yet I figure this child has had more testing, tubes, pokes and prods in his short little life than Husband and I have in our entire lives combined, so I let it go. Like so many things with C, while we recognize the potential future impact of our actions, sometimes we have to make the choice to help him now and worry about the future later.
There are two times when I don’t feel like I’m “on” with C. When he is somewhere with Daddy, or when he is somewhere with Ga (that would be Grandma, a hangover word from when he couldn’t say “Grandma”). The rest of the time I feel like I am “on” in some way. Even at night, given our continued use of a baby monitor.
School is no different; I dread the ringing of the phone. He is sick, he has eaten something he’s allergic to, or he’s finally sung “Brick House” (one of his favorites) to the principal and has been kicked out of school.
This child is a constant. I suspect, like my mother has sometimes gently suggested, that I am at times a bit too wrapped up in C. I freely admit to losing any sense of self after having C, and am now working very hard to regain it. Yet my answer to that comment, and to myself when I start to think about it, is “How could I have done it any other way?” As parents, we all just do what needs doing, and I firmly believe C needed my full and undivided attention. It’s not a sacrifice, it just is.
Like my mother told me, I tell C I have “eyes in the back of my head” when it comes to him. It worked with me as a kid; I believed my Mom could see everything I was doing. But C isn’t that easy. He. Must. Test. Constantly. “Mommy, without turning around, can you see what direction my train is going?”
Not realizing yet I was being tested, I said, “Forward.”
“Nope,” he said, “it’s going backward. Why couldn’t you see that with your eyes behind ya?”
C’s life is governed by rules, both his own and the world’s. He finds it difficult to prioritize, generalize and recognize when those rules should be broken. I wish I knew the magic formula to make a rule stick – as we’ve many times tried to create rules (don’t scare the dog) that just don’t seem to make it on his list of rules to live by. It’s his version of selective hearing, I guess.
Recently he was reading me a book from school, and I noticed he was leaving off the word “and” when it came at the beginning of a sentence. I pointed out he was missing a word, and he said, “You’re not supposed to start a sentence with ‘and,’ so I’m not reading it.” The child has the memory of an elephant, and usually can recite exactly what I said, when I said it, what I was wearing when I said it, and what the weather was doing when I said it. So teaching C the subtleties of why it is okay to break a rule every once in awhile without opening the floodgates is a challenge for which I am sorely unprepared.
As we prepare to head back to the mountains for an autism day camp so outstanding we’re willing to drive 12 hours to take C (and, I admit for the cooler weather), I am reminded of the various reasons we left our paradise to move south to the desert. We’ve lived in a ski town before, before we had C (and then we moved to the desert, and then we moved back to another paradise, and now we’re back in the desert). After we had C, Husband would ski on Saturday and I’d go on Sunday. Not ideal. Despite the fact that 5 feet of snow in a single weekend didn’t much make a dent in the lives of folk who live there (us included), the winters did get a bit long with a small child who hadn’t learned how to walk yet, much less ski. C eventually did take some ski lessons, but because of his low muscle tone, it became clear he wouldn’t be tearing up the slopes anytime soon.
Yet first and foremost, were the school challenges we faced in paradise. Once we pulled C from what should be known as “The Terrible Montessori Experiment,” we enrolled him in the regular public school. The catch was that we didn’t enroll him in the regular public school in our town. The public school in our town had failing scores year after year. We knew the truth behind those failing scores, and they didn’t phase us. A school’s rating doesn’t generally tell much about the special education program, so we tend to take ratings with a grain of salt. The challenge in our public school was the fact that 82% of the students were English Language Learners. First generation English language learners. Lest you think I’m saying something I’m not, let me clarify. Our issue was not the racial makeup of the school; we considered the diversity, and the opportunity for C to learn Spanish in one of the innovative dual language classrooms, advantages. However, we consider C an English language learner. We have observed, over the years, that he has operated much like a student learning not in his native tongue. The subtleties of a language must be learned by immersion, not by reading a book. And to put C in a situation where he, like most of the other students, would be “learning” the language, and all the social intricacies of that language, was not a good idea for him at the time. He needed to be in a situation more balanced, one where he had the opportunity to interact with kids who already knew the language. So we enrolled him in the school in the next town, which had about a 50% ratio of ELL students to native English speakers. And he flourished.
The fatal flaws? The school was 25 minutes away, no bus service, and snowy, icy roads to contend with. All his friends lived in another town. Not the neighborhood school we pictured when we envisioned his elementary school years. Now, in the desert, we’re 5 minutes away from school, and almost all the kids in town go to the same school.
Do we miss it? Desperately, at times, especially as the thermometer is always over 100 degrees this time of year, with no end in sight. Yet Ga and Pa are 15 minutes up the road, C can ride his bike all winter, and school is going well. The opportunities afforded to him by living near a large metropolis are endless. And the mountains will always be where they are, eventually, I’m sure, beckoning us back to paradise.
I’m often looking for a quick explanation to give to people when they ask what it’s been like raising C. I realize it’s difficult for people to understand what other people’s lives are like, and I want to be able to share in a way that helps people understand both the challenges and the joy.
I think having an autistic child, no matter where on the spectrum they fall, is like multiplying everything by 10. Much of what C does is hyped up in one direction or another. While I have been thankful not to have to attempt to figure out how to teach C to read, I would give just about anything to get him to eat a new food. Learning the states and their capitals? No problem. Blowing his nose? A zillion steps that have taken years to process.
And skipping developmental steps, or going through them at different times than “normal” have also presented interesting challenges and non-challenges as well. While my friends were desperately child-proofing every single thing in their homes to protect their toddlers, C was busy working on sitting up. We never really had to worry about him hitting his head on the coffee table; by the time he decided he was ready to walk, he just stood up and walked. There was no toddler stage in our house.
Not only are tasks often out of whack in terms of the ease or difficulty with which they are learned, but emotions are often very strong as well. While the tantrums and extreme distress are difficult for not only us, but for C as well, it’s tempered by the great and absolute joy he experiences over minute little details in life. New toothbrush? Tantrum. Getting an extra 5 minutes of computer time? Sheer giddiness. Outgrown shirt? Tears. New yellow shirt to round out his “closet rainbow?” Worthy of a press release.
Husband and I often laugh at ourselves in wonderment at the fact that we would probably have no idea what to do with a “typical” child. And honestly, we consider that fact a bit of a badge of honor. Not that we deserve a pat on the back; rather that we are in some kind of cool, secret club. Sure, the dues can be high, but it’s worth every figurative penny.
“Mommy, I have no one to play with. Who else can play with me? There’s no one else in my house. All of my imaginary friends are on vacation.”
C has been in occupational therapy since he was 9 months old, for both fine motor (hand) skills and sensory issues. Lately, however, I’ve been hearing rumblings that perhaps he doesn’t need OT anymore. Why, then, has he just learned to tie his shoes, and why did it take 9 months to teach him? Why does he struggle so to button and zip his pants? As it turns out, motor planning issues (getting messages from the brain to the places they need to go) have likely taken over from fine motor skills in terms of causing C trouble. The fine motor issues are still a bit behind, but he’s finally closing the gap. We’ve been waiting for this. He’s always made progress, but he just never caught up. He’s close now, very close.
Yet the biggest issue remains. Why does he seem so challenged by handwriting? He is capable of writing neatly, nicely, but he mostly doesn’t. He forms some of his letters strangely, which has resulted in handwriting that just has not improved. Enter a group of highly specialized occupational therapists who deal only with handwriting issues. Partway through the evaluation, the OT had checked the “mastered” box on many of the tasks C was required to perform, with only a few “improvement needed” scattered throughout. Was I crazy? Was his handwriting fine?
No, not even close. First, the joint in his thumb is very loose and floppy, which we’ve known for years. His thumb doesn’t have the strength and stability to help him write well. What we didn’t know is that something could be done for it. A bright blue thumb splint is on it’s way to our house in the mail. Second, he actually forms over half his letters incorrectly. He is writing half his letters from the top, half from the bottom, which is very difficult to do. It’s a perfect explanation for why, when he tries hard and takes his time, he can write fairly well. When he speeds up, however, it deteriorates. The answer? A week long handwriting camp, which actually seems quite fun, that will retrain him to write letters correctly.
Third, and perhaps the most troubling, relates to his vision. There is something going on with his eyes. It’s not the usual eye issues that a regular old eye doc handles. This requires a special kind of optometrist, one who specializes in developmental eye issues. C will likely need vision therapy, a series of appointments that will retrain his eyes to work properly together, which they are probably not doing at the moment.
Here we are again; about to embark on yet another therapy. We’ll drop one to make room for another, always leaving time for C to just be a kid. As I read up on vision therapy, I am astounded how little I knew before and once again find myself wishing I had known about this sooner. Yet, like everything else, this therapy is probably falling into C’s life when he needs it most, when it has the chance of helping him the most.
For those who missed last week, I’m doing a weekend link to some of my favorite autism-related posts. This week, I’m linking to AWalkabout’s blog, a place I’m sure once you visit, you’ll be enticed to stay awhile.
One of my earliest blogging friends is a delightful woman whose adventures in life and in autism amaze me. She balances it all with a grace most of us can only envy, on our best days. I always look forward to her posts, but for me, this one captures the essence of the challenges and struggles we often face in the midst of wonderful little moments of success.
This is one of those times when I wish I could do away with the need for privacy, and just tell you C’s name. It’s a really cool name, a very different one, one that nearly everyone that hears it has never heard it before and will likely never hear it again. It’s a word that has to do with birds of prey. Husband and I picked it because we were looking for a name that had something to do with the outside world, the environment, nature. The name just fit.
Less then 2 days after C was born, the ventilator he was on caused him to blow a hole in one lung, and a nurse rushed into our room asking permission to perform surgery to put in a chest tube. She was in a panic, and without batting an eye or even asking a question, we agreed. She ran out of the room, and we sat, numb with grief. There were so many tense moments, moments where I look back on them and wonder if I really realized how close he was to death, and I’m thankful I didn’t fully realize.
The next day, when C wasn’t improving, the docs told us they wanted to evacuate him to a hospital where they could handle his issues better. The evacuation would involve a 30 minute ambulance ride to a rural airport, then a flight over the Rocky Mountains in a lear jet/air ambulance, followed by either another ambulance ride or a helicopter flight to the hospital in Denver. I remember looking out the window; we lived in a remote Colorado ski town, and I wondered how they could possibly make the trip safely because we were in the middle of a heck of a snowstorm.
While we waited for the weather to clear enough for the plane to make it through, the nurse sent Husband home at 2 a.m. to pack his bags. He would go on the plane with C, and I would follow in a couple of days when I could once again move (I didn’t exactly hop out of bed after the c-section - I’m not sure I hopped anywhere for the next year). As Husband drove home, on a dark, snowy, isolated dirt road, he spotted a bird of prey flying in front of his car for a few moments before it took off toward the river. He took it as a good sign, a sign that C would survive all he had yet to go through. What’s in a name, you ask? Everything.