I love your brain

My husband travels a fair amount for work, and sometimes for pleasure. Today he’s making a long weekend visit to Vancouver for a boys weekend with his best buddy who’s coming from Baltimore. Life long friends getting a rare few days to pack in some quality friend time.

His travel leaves me as the lone parent, caregiver, creator of fun activities, and master of distraction for my son. It means juggling my work day so I can get the boy to school (summer school in this case), and then pick him up at the end of the day from camp, or to find a willing chaperone for the day. It means getting us both up, him fed, lunch prepared and packed, me showered, both of us dressed, him sunblocked, braced and shoed, settled in his wheelchair ready to start the day, and on his way either with me or with said chaperone.

Then off to work for me and reverse the events. It sounds daunting but strangely, when it’s just the two of us, it all goes more smoothly than when my husband is there taking on most of the morning prep since I tend to take longer to get myself ready than he does.

I dawdle. I review emails to get a jump on the work day. I sip coffee and visit with Cole while he has breakfast. Take my time applying a little make-up, and then help with some of the boy prep…I always do braces and shoes.

When it’s the two of us alone, I am a machine…I get everything prepped, shower, dry my hair, swipe a little lipstick and dress all before he’s even finished his breakfast. Lunch gets packed and backpack checked and Cole is sunscreened, dressed, and we’re out the door on time, where we need to be on time. And it all feels easy and manageable.

Perhaps having just one of us to answer to and rely upon is easier than dealing with the two of us. He knows that even with me running around he has my full attention, which he seems to crave. For me, I know that I’m the only one who’s going to be taking care of him, addressing his needs, so I’m more proactive and on top of things. I feel like it would be quite a feat to manage to find a balance when it’s the three of us in action. It generally works okay but there are fits and starts that throw things off. Something to work towards…

My twelve and a half year old son has started driving lessons. No, not those driving lessons – power wheelchair driving lessons! It coincides with the car driving lessons my nearly sixteen year old niece is taking right now. Both kids are more excited and far less nervous than I felt at the prospect of getting my driver’s license way back when.

I didn’t like driving and was among the younger of the girls in my gaggle of friends so I didn’t feel the lack of freedom that driving would afford. I had willing friends to get me wherever I needed or wanted to be without the hassle of having to drive or worry about getting a car. I was nearly seventeen when I finally dragged my mom to the DMV for my driving test, which I passed handily, though I still had little interest in actually driving! To be honest, I’m still not a fan.

Today though, my son and niece are both anticipating the independence and freedom that will come with their success at driving lessons. Both are taking it seriously and enthusiastically practicing with the intention of having the ability to take off on their own once they’re, for my niece licensed, and for my son approved for a power wheelchair.

For him it will mean he’ll have the ability, for the first time in his life, to move himself entirely by choice and to places entirely of his choosing. His free will is somewhat trapped by his own body and by the obedience of his parents, caregivers, and friends who fall in the charge of pushing his wheelchair to the places he needs to be or where we want him to be, but not always or necessarily to where he chooses to be.

It’s hard to fathom what this new freedom will feel like to him.

Transitions are always difficult and stressful on the boy.  He doesn’t discriminate between good change or bad.  He just doesn’t cope well with any end and beginning.  I know this is not limited to special needs kids, but in his case, the only case I have personal experience with, the fact that he cannot vocalize his concerns means he internalizes most of his fears.  It results in sleepless nights, clingy behavior (mom in particular is a security blanket), and grouchy behavior.  It also results in reverting to comfort TV and music.

I try to consider all of the things that might be going through that beautiful brain of his so we can talk about it together.  I want to quell his concerns and address any fears he has so he can move past it without it having to much effect.  I try to anticipate the sorts of things that will cause him stress.  Sometimes I’m successful.  I’ve considered having him see a therapist.  There are therapists who work with non-verbal kids…Something I’m a bit mixed on because I don’t exactly understand how they can interpret the feelings of someone who can’t speak and with whom the therapist has little to no history with.  I’ve spent his whole life trying to understand how his brain works and what he thinks about life.  I’m not all that successful at it.  At least that’s how it feels sometimes.

Summer is full of transitions for the boy so there’s a lot of disrupt in our lives.  The school year ends.  Summer starts. A couple of weeks of cooking camp.  Then summer school and day camp in the afternoons – four weeks of this so there’s hope for some calm after a week! We’re taking a little family road trip to explore the Grand Canyon.  And then two more weeks of camp until…School starts again…Whew.  I’m already excited for the new school year.  It brings with it the promise of peace.

Talk about procrastination! Two and a half years ago I attempted to write frequently and to share the wild ride we call life with our almost teenage son who has cerebral palsy (non-verbal and non-ambulatory). A little background…He came into this world without a breath. It took twelve minutes for him to take his first breath. I don’t know if that essentially means he was born dead, and came to life, or what? It always strikes me as odd. He fought crazy odds and left the hospital with a g-tube (still has it), weighing over ten pounds, and a lot of uncertainty. We welcomed him home with lots of love, determination and the desire to give him the best life. He’s been through surgeries, lots of therapies, and more doctor’s appointments than most people have in a long lifetime. He handles it with grace (usually).

He’s been part of inclusive education since he was a year old, and is now going into 7th grade. He’s on honor roll most school years and spent the last year getting to know Tobii, an eye gaze speech output device. He’s happy to use it at school, but still prefers to use the language we have developed over the years of him smiling, frowning, occasionally uttering words, and us mostly guessing…I think it amuses him, until it doesn’t, and it’s tiring to use Tobii all of the time, especially after long school days. He’ll get there. He uses a gait trainer at school too, and prefers to play baseball on his feet, with adult support. We were told he’d never walk but he runs with help, or in his gait trainer…and dances! HE LOVES DANCING.

Because he’s always known inclusion, and has never been segregated because of his disabilities, he doesn’t really identify with kids who are similarly abled to him. You have to like the things he likes or something that interests him to learn about. He surfs, skis, plays baseball and is now interested in volleyball (the girls are playing at school so there’s motivation to play). He loves music, swimming, dancing, and cooking. He eats very little by mouth, and decided some time ago that he’s a vegetarian, though he’ll nibble on sushi. He finds comfort watching old Nick shows that he loved when he was little (Little Bill, Blues Clues) but he also loves Ellen, Dog with a Blog and About A Boy. He’s like that with music too…He’ll listen to Weezer and Coldplay and One Republic, but then when he’s feeling tired or anxious, he wants things he loved when he was small like Ralph’s World and They Might Be Giants. His brain is a curious place.

He likes to travel and is desperate to see Paris. I’m not sure why exactly but it may be my influence as it’s one of my favorite cities. I came back to this today because we’re gearing up for the family summer road trip. We’re visiting the Grand Canyon, first time for all three of us, at the end of July, and are taking the long way there with a couple of days in Las Vegas…We’ve heard the Lazy River is a must do for kids so we thought why not. Brights Lights and then one of the most magnificent sights in nature…a great contrast in just a few days! Travel with the boy is always interesting. We’ve grown pretty adept at making just about anything work.

We might do things differently but we’ve really never not done something we really wanted to do. I’ll never put him a position of not trying to make something work. I’ll never short change him of an adventure or experience if he’s passionate about it.