Archive for April, 2008
It is amazing how your circle of friends change when you have kids. You find yourself bonding with people you might never have known if it weren’t for your kids’ connection to them. Having a child who is “special” has brought me all kinds of friends I might have never met otherwise. Friends who have become integral parts of our lives simply because of our shared experiences, even if they aren’t the same experiences. These are the kinds of friends you don’t have to explain anything to if your child has a 2 hour temper tantrum at their house or can’t eat anything in their kitchen because he’s allergic to everything. These are the best kinds of friends, even if the only thing you have in common is your kids.
For a long time I completely surrounded myself with these friends in a protective cocoon. I couldn’t be around people whose kids were developing “typically” because their lives were so different than ours, and it hurt. We were so worried about our child and had no idea what was happening with him. It seemed like the whole world of parents I used to know took everything their child did for granted while we were teaching C how to swallow food. Not true, I know, but it felt that way.
Even though I have made it back to the world where one has friends simply for friendship’s sake, those somehow connected to the world of special needs remain the best. There’s just something about being around people who have an understanding of what is happening in your family that is both empowering and relaxing at the same time. Autism can at times make for strange bedfellows, but I’m thankful it has brought us some dear friends.
Sometimes I wonder if some of C’s quirks were simply reinforced by us or created by us. I remember when he was a baby and we hit a rough patch for sleeping, I turned to a book by Dr. Ferber that is either loved or hated depending on whether you are a control freak or a free spirit. Ferber advocates strict schedules and rules for helping your child sleep. We tried it, it worked, and our child is a truly great sleeper these days. It was hard, however, and I remember one middle of the night discussion with Husband that resulted in his calling me a “Ferber Nazi.” Not one of our better moments.
When we switched C from a crib to a toddler bed, however, I sat down with him and told him not to leave his bed unless Mommy or Daddy came to get him. Silly us, we were worried he would wander out the door in the middle of the night. Yet I forgot his black and white world, and consequently he NEVER left that bed until we came to get him. He would sit in there, happily playing, waiting for us to wake in the morning. He did not toddle into our room in the middle of the night. For that reason I still use a baby monitor because he will stay in his bed suffering rather than come get us. You can guess how well I sleep.
Now, C is a bit of a disaster if we veer off course from his schedule. When I venture to the grocery store at night, I marvel at the families out and about, living life and doing things. We are at home and in bed at night. Our lives revolve around bedtime. Just one Friday night up an hour or two past bedtime and there are repercussions for a week. Ferber created nightmare or a child who likes his routine? Hard to say, but sleep is a biggie in our house. I just wish I could get some.
When we first brought C home from the NICU, he was on oxygen. We lived at high altitude and had to drive over two even higher mountain passes on our way home from the hospital. We were outfitted with enough oxygen to get through the first few days and then multiple oxygen tanks arrived at our home along with cheerful nurses who checked on him daily.
We weren’t supposed to take C anywhere, said his doc, who advised us to avoid his getting a cold in his first year. (Um, okay.) Surprisingly, we all managed to avoid colds during that year, which is kind of a miracle in and of itself. The only place we could take C was the doctor’s office, for our thrice weekly visits. Determined to get him out in the fresh air, I would put him in the front pack and sit outside on our porch, the furthest point the oxygen tubes would reach. Eventually, they brought us travel tanks, which allowed a little more freedom in terms of walking around the house with him.
I remember my most favorite moment, which occurred about six weeks after arriving home. The visiting nurse had noticed on Friday C’s pulse-oxygen levels were within normal ranges, and we’d had to wait – over what seemed like a terribly long weekend – to confirm with the doctor on Monday that he was, indeed, ready to breathe completely on his own. We disconnected his cannula and we were on our way. We had a cordless baby. We still couldn’t really take him anywhere, but the freedom to just carry him around the house without trailing heavy scuba tanks behind us was joyous.
To this day I still check on him at night to make sure he’s breathing, although far less than I did back then. There’s just something about having a child who can’t breathe on his own that sticks with you somehow; long after the breathing tubes are gone, there’s still that fear buried in the back of your head that you can’t quite let go. Open door, approach bed, put hand on chest to feel the rise and fall, exit room, close door. Breathe.
Whenever we visit a new doctor, I am inevitably asked if I have a medical background because I throw around terms like “pneumothorax,” “sepsis,” and “hypotonia” with reckless abandon. Aside from the initials people (see Awalkabout’s “Alphabet Soup“), there’s a whole slew of other words and terms we parents are required to learn simply to participate in an intelligent, informed discussion with a doctor or at an IEP (Individual Education Plan) meeting. My entire knowledge base and language have changed since having C seven years ago. I’ve learned about needle gauges, what a swallow study is, all about methylation pathways and how they work (or don’t), what to do about ankle pronation, what epi-pen is for and how to administer it, and what supplements to give when, how, and with what other supplements. It’s no wonder my brain feels full, as I think I’ve earned a Ph.D. and an M.D. in “the study of C.”
So when that inevitable question about my medical background (or lack therof) comes up, I simply say it’s been “trial by fire.”
Imaginary play can be slow to develop in autistic children. Like C’s language of echolalia (repeating things he’d heard elsewhere), he seemed, for a long time, only to play in scenarios taken from somewhere else. He would painstakingly recreate a Thomas the Train episode with his toy engines, no small feat in and of itself, truth be told.
Slowly, however, signs of imagination in his play emerged. While he was and is still rooted in a very concrete world, I see moments of creativity and even downright exaggeration appearing in his thoughts. “There was a fly in my room. Pause. It was THIS big. (Imagine the gesture from the guy telling the fish story inserted here.) I shoo-ded it out of my room. It almost broked the window going outside.”
I laughed out loud at this one. Laughed because, well, it was funny, and laughed because he was so earnest while telling his tall tale. I could picture him years from now shooting the breeze with the guys and perhaps even getting away with it.
And that, I say with delight, is THIS BIG.
Wake up. Wait for C to wake up before showering because he will scream that he needs a bottom wipe (still working on that….) while right in the middle of shampooing and will have to dash across the house, dripping soap bubbles all along the tile…dog will lick those up but will probably throw them up later, and usually on the carpet which is harder to clean up than the soap bubbles on the tile. Listen to C get up (via baby monitor), turn off his white noise machine and get pull-ups off, undies on. Remind self to do some research on how to night potty train but also remind self there are bigger battles to fight at the moment. Listen to him go into his bathroom and run to his room to attempt to figure out how, when he pees, it gets all over the floor, the back bottom of the toilet, and the wall. Miss out on that one. Must remain one of the great mysteries of the universe.
Take shower, interrupted by C standing outside shower door, talking, but not talking loud enough so I can hear, and after repeated attempts at understanding what he’s saying, watch him follow dog out into the hall and wonder what he’s going to do to said dog, and hope husband is paying enough attention to save dog should necessity arise.
Plod into kitchen, ask husband if he gave C reflux medicine (99 times out of 100 the answer is yes, but must ask in case today is that ONE day), start fixing breakfast. Listen to repeated requests for “dip” (favorite breakfast of dipping something, usually gluten free pretzels, into natural peanut butter and organic whole fruit jelly without any apples because C is allergic to apples), and decide to make his day start great and give dip. Listen to newly acquired request to “spread” peanut butter out on the plate “like Daddy does,” and wonder if this is the start of some new sensory based problem rearing its ugly head.
Start making lunch, which includes tearing up gluten free deli meat chicken (must be chicken because C is allergic to turkey) into perfectly sized small pieces, knowing if it’s not perfect, I will hear about it the whole way home from school and will be reminded of the one day I didn’t do it perfectly for the remainder of the school year. Put assorted other odd finger foods he will eat at school (which is a shorter list than the foods he will eat at home) into lunch and wonder, if anyone at school wonders why I send the same thing for his lunch every day, and resolve to increase attempts to work on feeding issues in the hopes he will learn an “apple is the same thing at home, school, grandma’s house, the park,” BUT OOPS, he can’t have apples, work on another analogy.
Finish packing lunch and set out clothes and revel in the fact that after years of work, C is finally able to unbutton own pajamas and can mostly dress himself as long as things are laid out in right direction and he doesn’t have to button, tie, zip, or snap anything. Make mental note to ask school team to work with him on those things in the hopes that someday, between the team at home and the team at school, he will be able to wear something besides elastic-waisted pants. Wonder when elastic pants become sans-a-belt pants and do kids make fun???
Get water bottle filled and be glad it only took two weeks to figure out the bubbles that come home at the end of the day are NOT in fact from some leftover soap contaminating his water bottle, but rather because he messes with the straw in the bottle, blows water back INTO bottle, making, in effect, spit bubbles. Listen to C remind me again that there’s soap in his bottle (BLAST self for ever suggesting that within his ear shot!), and remind HIM again that the bubbles are from his spitting back into it and please don’t do that.
Pack up backpack – have him pack himself reminding him of the backpacking rules that come so naturally to most people. Wonder if I ever had to LEARN how to pack a backpack or did I just figure it out inherently??? Teach him (again) to put homework folder in first, followed by lunchbox, sweatshirt and water bottle on the side.
Run out door and get into car. Buckle into 5-point carseat and wonder when C will get enough muscle tone combined with weight where it’s safe to put him in booster seat. Wonder when more kids than just the one boy - who says something EVERY time he’s in our car – will notice that C is still in a “baby” seat. Sing stupid songs, pretend to race, do whatever it takes to get to school happily and distract from inherent distress at going anywhere Mommy is not. Join in lively rendition of favorite song, “She’s a Brick House,” (complete with “womp-bomp-a-loo-wow” sound effects) and renew concerns about the implications of a 7 year old knowing that song. Start singing “She’s a Maniac” (coupled with pretend fast driving) and doctor up the words to talk about Mommy driving like a maniac and wonder when THAT will come back to haunt me and in what way. Ask what special he has today and if he thinks they’ll have rocket math and keep up constant chatter entire way to school while looking in the rear-view mirror watching for tears or signs of distress.
Get to school, park (because we don’t do the “push-out” lane), and walk onto playground, generally timing it right before bell rings so there won’t be too much time to run around and generate reflux issues before school even starts. Watch C run around for 2 minutes and not connect with anyone and fight urge to snatch him up and run back to car and keep him at home, sheltering him from sure pain of growing up. Watch him keep one anal ear out for horn so he can not only get in line, but cover ears because horn is too loud and resolve to ask if they could substitute something that doesn’t cause all the spectrum kids to go into sensory orbit before they’re even in the building. Know he is so worried about when the horn will blow that even if he had more time, he wouldn’t venture more than 10 feet away from his class gathering spot and feel sad that he’s so worried at an early age. Wish I could worry for him, and realize, oh wait, I already do that, but wish he didn’t do that.
Wait for bell to ring, receive more kisses and hugs, be thankful that some days he walks off to get in line without even a backward look at me. Be happy that days of crying and begging to go home are mostly over. Wait for class to line up and go inside, standing, waving goodbye, before walking out with handful of other parents who still walk their kids inside the playground. Wonder, as we walk past the teacher/aide who is waiting for us to leave so she can lock the gate, if she thinks we’re nuts or just diligent parents.
Go home, work, clean, write.
Worry that phone will ring and it will be school.
The first time C ever got in trouble at school was during his last year of preschool. When I went to pick him up, his teacher – a delightful woman with an enchanting voice every preschool teacher should have – was aquiver with excitement. “We’ve been waiting for this!!” she exclaimed. “It’s so typical!” For the uninitiated, “typical” is the word that has replaced “normal” in the world of development and special education. “Typical” is something they strive for, at least in certain areas.
For Miss P, it was a moment that surpassed nearly all others in C’s achievements during his years with her. For him to get into trouble meant he was comfortable enough to let go, he was relaxed enough in his environment to just be a kid. I have no recollection of what he did to land in hot water, but I do remember how excited we all were.
Now, when C tells me he was “counted on,” I admit to experiencing a secret thrill. They use the “1-2-3 Magic” method at his current school, and he rarely gets past a 1. In my mind, when he reports being counted, it means he was just being a kid, a regular kid at that, and was probably participating in mischief with another child. All good things for C, in my book.
As my boy wandered around on the playground this morning, somewhat idly, he had a grin on his face. Anyone looking at him would think he was happy. But I, as a somewhat skilled interpreter of his language, saw a different picture. He watched the boys and some girls playing basketball, probably knowing the game was too fast for him. He said “hi” to a couple of kids in his class, but didn’t connect with anyone in particular. He was grinning in that slightly uncomfortable way one grins when they don’t know what else to do with themselves. He went up and down the slide a few times, enjoying it, but I’m sure knowing it would’ve been far more fun if he could share the experience with someone else. And I just wanted to cry. I still want to cry. I do cry.
I know some people think I worry too much about this child who appears so happy and well-adjusted. Most of our days at home pass with relative calm; we’ve become so used to the way our family functions that we don’t notice how “different” we are. C doesn’t struggle in an obvious way at school, and to all who see him, he seems like he’s doing really well. He is in fact doing really well, and he likes his school.
Yet there’s more to the picture; there were tears last night. Big, fat, alligator tears about a hole in his sock that were probably about more than the hole in his sock. There’s crying every Sunday night about not wanting the weekend to be over, which probably has as much to do with Daddy going back to work as it does with C going back to school. There’s constant distress over why a certain friend, his “best” friend, doesn’t ever invite him over when we’ve had that friend over numerous times. He so desperately wants to have friends, lots of friends. He does have a number of surface friendships, but nothing outside of school would happen if I didn’t initiate it. No one is running home begging to do something with C. He is painfully aware of this fact, and doesn’t understand why.
I so worry about this sweet, sensitive child who seems to mask his worries and stress. I want his path to be easier, and not because I want to shelter him from learning tough lessons, but because I worry he will be so terribly damaged on his journey. I see tiny, subtle little clues that he is struggling far more than any of us realize, and I wonder what that means for him down the road.
I realized this morning, as I did my morning errands and chores after dropping him at school, that I want things to be different for him. I want a cure. But not for him. For the rest of the world.
An entry from C’s writing journal at school….
….Tomoroow we are going to the zoo. Tomoroow is my lucy day. My shaporon is coming. I think I will see a lion…
Translation – “…tomorrow is my lucky day. My chaperone is coming….”
Awwww, shucks. That “shaporon” he’s talking about is me. I have the sweetest boy in the world.