Archive for August, 2009
My very brave boy decided again to run for student council. Sure he would get elected this year, he eagerly wrote his speech and earnestly talked about why he would like to be involved. He practiced his speech before school and apparently even added a few sentences on the fly while standing before his class.
He came home on the day of voting positive that nearly everyone had cast their ballot in his direction. I alternated between wanting to be completely supportive and needing to prepare him for the possibility that he might not get elected. Yet ever hopeful was I, thinking about his strong start this year and his seeming to finally have a little bit of a support system among the kids.
He was close, his teacher said, really close. For that I am happy. As for C, he handled the disappointment pretty well. His closing comment on the matter? “Good grief. I hope I get elected to student council before I get to college.”
Me too, C. Me too.
I’ve written a lot in the past about the stages of grief when dealing with a diagnosis of any sort for a child. Having experienced both medical traumas along with the developmental challenges, I can say the medical traumas were more immediate and frightening while the developmental ones still sometimes keep me up at night.
However, I suspect for a lot of us, there comes a time when we pass through something akin to acceptance. There are frequent blips back to denial and anger smattered in there, but for me, I’m mostly hanging out in the land of “what is” these days. It’s not that I’ve given up and stopped trying to give C the tools to make his path in life that much easier, but I think all parents do that. And it’s not that I think there’s nothing left we can do to make C healthy and happy. We’re doing that too.
I suppose I’ve just settled into being a parent, and a parent to this child in particular. I remember once talking to the parent of an adult child with autism, and she (so haughtily, it seemed to me) smiled knowingly when I told her about doing hab work and supplements and a zillion therapies. “Oh yes,” she said, “I remember those days. You’re still in that period of frantically trying to do everything you can thinking your time is running out.”
I was moderately offended, even after I realized she was right. I didn’t really need to hear it at the time, and if I could have the conversation to do again, I’d remind her that at one point she was in the same place I was. We all go through that; the initial stage of late nights, plugging in every keyword from the neurologist’s report into google trying to find something that will explain what is happening. I’ve been through the constant therapy appointments, driving six hours round trip once a week over two major mountain passes simply for feeding therapy. Couple that with OT, PT, ST and hab, and we had a full load for awhile.
Now I’m sort of between the Mom who seemed so condescending and the Mom I used to be. Somehow, where I am now is not quite so frantic. So harried. So wearing. There are still days that seem like they will never end, and there are still tears of frustration at times. But for the most part, there is more calm. I’m not googling all the time. I put on jewelry and sometimes even make-up. The all day sweats and ponytails, while still present sometimes, are mostly behind me. I even have some friends that have nothing to do with special needs kids. And sometimes, we don’t even talk about our kids at all.
Just like our spectrum kids, I don’t suppose all of us parents have landed in the same place on the continuum. I hope when I get to the place that Mom before me was, I’ll remember what it was like to be in the thick of things with my kid and be empathetic to those in the trenches. But I’d also like to tell the parents coming up behind me that they’ll get here too, eventually. Maybe not at the same time or place that I did, but the peace will come. I promise.
I spend a lot of my time trying to figure out how C’s brain works, and how I can use that knowledge to be more supportive of his needs. In those rare moments when I am provided with a brief glimpse into C’s mind, I am always enchanted. One thing I can always count on is C’s entertaining way of making connections between often very disparate things. It used to be when driving in a big city C would notice the exit numbers off the highway. “That’s exit 16! Abraham Lincoln’s number!” he’d say. We’d always celebrate those connections, even if they were far from typical. Connecting the dots is one of those things therapists work on with kids with autism, and learning to tie knowledge together is big in those circles.
C’s Presidential interests have now mostly turned to President Obama, and he was very excited that one of the President’s daughters is the same age he is (again, connections). C’s big report for 2nd grade was about Barack Obama, and the Presidential “fact” he shared at the school assembly on President’s Day was that President Obama is our first African-American President. I didn’t realize he had no real idea what that meant until recently. When we stood in line at the airport a few weeks ago, C noticed the gentleman standing in front of us. As Caucasian as could be, the man was wearing a black suit. “That man looks just like Barack Obama, Mommy!!!” C said elatedly. Curious as to his response, I asked the obvious question, wondering what the connection could possibly be. C’s answer? In a tone that implied it should be as obvious as the sun, “He’s Black, Mom!”
I knew it would, but I just didn’t think it would happen so soon. The day has finally come, the day mothers everywhere dread, a rite of passage so depressing it’s hard to even contemplate. Yet when it happened, it happened so quickly I almost missed it, and now I can no longer remember exactly when it occurred. C is so innocent and naive in everything else – why this change? Why now? Why, why, why?
It’s happened. To C I am no longer “Mommy.” Now it’s just “Mom.” Drat.
Big transitions have never really seemed to be a problem for C. We’ve moved more times than I can count with his gleeful participation and joy in settling in somewhere new. He happily troops along on road trips and thinks sleeping in a hotel is an adventure, even if it is just a dumpy old place along the road between the old house and the new. If we switch his toothbrush on that trip, however, it’s a problem worthy of major meltdown proportions.
This school year involved a big transition which everyone was nervous about. C’s move from the lower elementary school to the upper seemed like an insurmountable leap for which he wasn’t ready. Let’s face it, he’s about a foot shorter than everyone else and still watches Thomas movies, while his peers are talking about the latest Batman, Spiderman, or some other scary (to C) man out there fighting even scarier men. On the scale of emotional maturity and sophistication, C is most definitely at the bottom of the pack.
It was with great trepidation we all approached this change, and for the first time ever, we saw tangible evidence of how challenging this transition was going to be. Before bed meltdowns that began the day school started, coupled with big, fat, alligator tears on the way to school each day told me C was as nervous as anyone. The biggest clue to his state of mind has been his complete lack of desire to arrive at school early enough to have playground time before the morning bell rings. That’s my barometer of his emotional state of mind.
The flip side is C’s complete and utter joy in describing his day when I pick him up after school. He is filled with stories about games he played and who he sat next to at lunch. He’s keeping a running tab of which kids have which game systems, and his interest in potential playdates seems to be intimately tied to said list.
So despite the reluctance in going each morning, which seems to be lessening as the days pass, I have to believe C is adjusting well. It’s been tough on him for sure, but I think this transition has been just that: a transition. In and of itself. All by itself. Nothing more.
Now all we have to do is keep the same toothbrush the whole year.
Every once in awhile I get a reminder that C, more than other kids, needs to be motivated in order to do what we in the autism community call a “non-preferred activity.” He doesn’t understand why he should possibly have to put away his laundry, and comments, complains, and cries about it every single week despite the fact he knows he has to do it every single week.
If the laundry is the bane of C’s existence at home, at school it’s writing. He doesn’t really like to write; it’s hard for him and he wants to push through it as quickly as possible. Last year, C’s teacher had the kids complete a brief writing assignment each morning while everyone was getting settled. She sent them all home, and they have been my joy to read. Generally he wrote one or two words, or perhaps even a sentence on a good day.
Yet one writing assignment in particular brought out a relative slew of information C simply had to impart. He covered all of the provided paper, front and back, with his stream of consciousness brain dump. It was my reminder how important it is to find the hook for C in order to get him fully engaged, and when that happens, watch out! The topic? The Civil War. The writing? As follows:
During the Civil War…“45,000 people were killed. The battle was in Virginia. 750,000 people joined the army. There were two other battles. Then Abe Lincoln made the Gettysburg address. He was the 16th President. The North won the war. 30,000 people didn’t die. The North won because of Ulysses S. Grant. The South won the first battles but then the North started winning. Lincoln was the President of the war. He got killed by John Wilkes Booth.”
From C’s school writing journal…
The most important event in my family was…having my Dad turn as old as James A. Garfield.
If I could be anything in the world…I would be a golf ball.
If I could fly…I would be with the birds. I would fly to school and back home. It would be awesome if I could fly with everybody in the world even George Washington and Abraham Lincoln.
During a hurricane…they cause lots of damage. Hurricanes have names from A to W. They go boy girl girl boy. You got to be near an ocean.
A time machine…I would see the dinosaurs. I would see television shows like old ones.
“Mommy! This is made in Italy! I thought everything was made in China!”
“Mom, when was color invented?”
“Mommy, why did you marry Daddy, do you know?”
“Mommy, do you know where the closest weapon factory is?”
As I watched C on the first morning of school, I also watched the boys in his class greet each other with fist bumps and high fives. C stood alone by the side of his class line and completely shut down. No words, no smiles, just a death grip on my hand strong enough to make me wince, while he looked straight ahead and fingered the picture of our dog he had stashed away in his pocket.
Last year, C seemed to figure out that girls are good and boys are sometimes mean. Blessedly he missed much of the teasing directed his way, but there was definitely some awareness that the boys weren’t always nice. I watched him throughout the year as he eventually stopped greeting many of the boys in his class altogether. He just gave up and stopped trying with them. Part of me was happy that he learned to stay away from those who hurt him, but the other part of me wished he didn’t even realize they hurt him.
Of course, if C didn’t recognize the pain of being shunned, I would have a completely different child than I do. I am thankful for how far C has come over the years, and I remind myself it wasn’t really all that long ago (although it seems a world away) that we were worried he’d never break out of his shell and lead the kind of life he’s leading now. This is a child who wants friends with a desperation that is enough to make me cry but rejoice at the same time. Far more a blessing than a curse, C’s awareness of other kids and his desire to have friends sometimes brings him sadness but also delivers the greatest joy. My single most important challenge as a parent is making sure those two emotions counter-balance each other.
C trying to teach Dog how to play concentration.
In the past couple of years, I’ve found myself on a strange journey to recapture the me I used to be. I’ve never liked the idea that one needs to find oneself, but I absolutely understand the idea that a person can get lost. I have, most definitely, been lost. Lost inside those early years of raising C where we bounced back and forth between specialists and therapies; years where my dearest friends were the therapists working with C. We shared a common goal of helping this child along his path in the best way possible, which probably explains the tightness of our bonds and why some of them remain strong all these years later.
In the years since C started school, I’ve slowly been working my way back to my own interests, although I admit to not being completely sure what those actually are any longer. Lofty goals such as traveling the world and writing great books have given way to watching Amazing Race and escaping into books other people have penned. A former desire to work at the Smithsonian has melted into not being sure I’d even care to work at the local history museum at this point. Just what is it I want to do with myself, my future, the rest of my life?
The entire issue of my sense of self hit me hard while sitting through what was, in my opinion, a terrible movie adaptation of the amazing book My Sister’s Keeper. At one point, the mother of the terminally ill child was asked who she thought she’d be if she weren’t fighting for her daughter. Recognizing that our situation is far less critical, I still asked myself the same question in that moment. The truth is, I’m not sure of the answer, but my sense is that I’ll figure it out. I am quite sure there’s a way to balance everything while still knowing who I am when I stand alone.