Oscar-Go

[Note from the Oscar Ensemble Oscar Goes: A Wheelchair Accessible Van Benefit, Saturday October 6, 5-8 pm, Dyer Arts Center, NTID (RIT campus). See the VAN page for details!]

by David

The impetus for this blog post began a few months after Oscar began using his power wheelchair.  Oscar began using the bottom of his wrist instead of his hand to toggle the joystick (which is the steering mechanism) of his power wheelchair. I immediately asked Oscar why he was using his wrist in place of his hand and suggested he use his hand. I also immediately realized I was overreacting, projecting my own fears that maybe he is already losing hand strength, instead of allowing him to improvise in whatever way he deems fit as he navigates through his world. I chose to correct him.  Luckily I was able to catch myself shortly after a small pang of guilt. I was being reminded by my boy that I needed to exercise some patience, first, as a parent, second as a parent of a boy with SMA.

The presumption that a power wheel chair now changes everything about Oscar having SMA without any further physical restrictions, of course is an unreasonable expectation. Oscar still has muscle weakness, he always will, it is the nature of SMA. Oscar has difficulty raising his head should it drop forward and more often than not needs assistance lifting it back up. Oscar gets fatigued toward the end of the day thus complicating his mobility whether he is in his power wheelchair or sitting on the couch trying to lift his arms while playing with his toys.  Impatience. Panic. Understandable, right? You long for normal, even the newly assumed normal we have integrated into our lives by way of power chairs, standers and respiratory equipment. Believing that Oscar should be able to just go without additional barriers, to be able to revel in his newfound independence, for the most part is possible. Yet when placed against some of the realities of SMA no amount of equipment can actually change Oscar having the disease; the equipment (in this case a power wheelchair) can only alter the way Oscar navigates his world. However, Oscar using his wrist instead of his hand to steer his wheelchair, also reminded me, simply having this device and being a pretty quick teach doesn’t leave him exempt from having to LEARN how to use it. If Oscar were able to walk—wouldn’t he fall or bump into things, or drag his feet when tired? Of course he would. Why then as Oscar’s parents does applying some patience prove challenging?

Perhaps there is an element of fear. We want him to remain as strong as possible for as long as possible. We want the number of obstacles already present as a result of Oscar’s SMA to be less of an issue now that he is able to zoom with his power wheel chair.  And that’s just it— he is able. However he is still a 3 and ¾ year old boy (Oscar is always reminding us of the ¾ when we say he is 3) who will sometimes get tired, will get distracted, will want to play, will want to test all of the ways he can and might steer his wheelchair.

As parents we have to be flexible, just like any other set of parents. Perhaps trusting in Oscar’s abilities versus his disability is crucial and I do think as his parents we are pretty consistent in doing so.  All of his abilities that aren’t related to SMA per se such as his advanced verbal skills, drawing/artistic abilities, cognitive thinking are astonishing and easy for us to revel in. We are careful never to take these for granted and we are always quick to share our genuine enthusiasm, yet we’ve come to expect these abilities from Oscar. Although the various physical challenges of the disability prove unpredictable, sometimes trying to interpret what is fatigue or muscle weakness and what is the temperament of a 3 and ¾ yr old boy also enters the parenting equation for us.  This requires some troubleshooting and of course as parents we are not exempt from trying to meet the needs of our child. It just so happens the physical challenges are inherent at this point as a result of Oscar’s SMA. Maybe the advanced verbal and cognitive skills are as well.

Perhaps these words can serve as a reminder that patience with ourselves as parents is necessary. Oscar being Oscar is the most rewarding reminder.

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[Note: To comment on a post click the title of the post you want to comment on and a comment box will appear at the bottom of the post. You will need to enter your name and email to the left of where it says, “name” and “email.”]

I would say this is a time to learn a little more about what SMA is, and to teach others what it is. A time to become more aware of disability issues, and to work toward a greater sense of acceptance and equality.

Throughout the month I will from time to time be posting links, facts, and inspiring stories on the Oscar-Go Facebook page. So, if you’re on Facebook but you’re not part of the Oscar-Go group, please click on the “ask to join” button, and please encourage your friends to do the same. I’ve already posted the link to Disability Horizons, the incredibly inspiring online magazine run by two young men with SMA.

For us, SMA has altered our expectations, our perspective, our priorities. I think it is pretty safe to say that receiving Oscar’s diagnosis of SMA is the most devastating experience either David or I have ever had. SMA presents challenges beyond what we could have imagined. Watching our three year old at school unable to fully engage with his peers because he can’t physically keep up with them. Spending nine days in the hospital earlier this year, comforting Oscar through pneumonia—fevers, medication, six days on oxygen, countless x-rays, IV lines, blood draws, brand new respiratory interventions (nebulizer, cough assist, chest PT/cupping, the vest). Our collective, consistent lack of sleep. SMA complicates the day-to-day. A need for stander time, the twice-daily respiratory care routine (nebulizer, cupping/chest PT, stretching, cough assist). These interrupt the flow of the day, restrict the amount of time we can spend out of the house, prescribe how a chunk of time will be spent every single day.

The presence of SMA in our family is probably the greatest challenge I’ve ever faced, but it is not the worst thing that has ever happened to me. The diagnosis, yes. The learning to live with, no.

Our expectations have changed. I don’t know how to describe what my expectations for Oscar were, before we knew what SMA was. But of course, like most parents, I expected that he’d crawl, then walk. I expected to watch him in that ridiculously cute, toddling, waddling, early walker stage. I expected he’d dance with his feet on the floor. I expected he’d require little medical attention. I expected the near-guarantee that he’d outlive me. Now my expectations have changed. I love watching him zoom across a smooth floor gracefully, or watching the way his chair and his body work together to navigate the bumpy terrain of our lawn. I love watching him dance, seated, from the waist up. He puts his whole spirit into dancing—and isn’t that what really counts? I am thankful for the team of experts we’re learning from, for the medical equipment that helps keep my boy healthy. I am learning to embrace the unknown. None of us knows when we will die, or how suddenly we may lose a loved one.

The parent who expects their family to go hiking and camping regularly may be surprised by their child’s bug phobia or inability to sleep outside. The parent who expects to coach their child’s sports teams may be surprised by their child’s clumsiness. The parent who expects to compose music with their child may be surprised by their child’s sole interest in the sciences. The parent who expects their child to pursue a “sensible” career may be surprised by the arts major their child chooses. And sometimes, amidst all these surprises, the parent who expects their child to follow their passion for the history of baseball may find their child forging a new and unexpected path. So we adapt. We learn along the way. Our child teaches us lessons we didn’t expect to learn.

My perspective has changed. I’m still working at this, learning what it means. I admit, I did not used to know how to look a person in the eye if s/he was in a wheelchair. Somehow that difference was intimidating, uncomfortable. Somehow, some of us walking people think we know something about rolling people, just because they have wheels. Thoughts of What’s wrong? What happened? pop to mind. But maybe the fact that someone is in a wheelchair is not the most significant thing about that person. Just as the fact that I walk is not the most significant thing about me.

People do seem afraid of the word “wheelchair,” especially as it pertains to a small child. Perhaps a three-year old in a wheelchair is too unbelievably sad for some, or just plain unusual, to name. People often say to Oscar, “Nice car!” “Cool buggy!” “I like your ride!” “That’s a fun scooter.” Looking in from the outside, I understand this perspective. But Oscar knows full well that what he drives is a wheelchair. He understands that he can’t walk, and possibly understands that he won’t ever walk. He is not afraid to talk about this. Sometimes this makes him sad, but mostly he is pretty accepting of the way his body is made—which is more than can be said for many able-bodied adults. He’s more sad these days that he can’t take his power chair out of the neighborhood. Oscar loves his “go power chair” with wild abandon. And the term “power chair” is quite deliberate. “motorized wheelchair” is technically accurate, but “power chair” subtly reminds that folks in power chairs indeed have power.

Priorities have changed. The cliché, “Embrace every moment.” We live that more presently now. We have been given the gift of seeing more clearly that this moment, right here and now, is the only thing that is certain. This moment that I pen these words onto a page in my journal as the sunlight filters through a grove of oak and some other tree I’m embarrassed I can’t identify. As the wind blows cool on this thickly humid morning, as the water of Mendon Ponds sparkles before me and I hear no human-made sound except the occasional murmur of voices as hikers or runners pass by. Since Oscar’s diagnosis, we have less tolerance for insincerity, less patience for bullshit. More awareness of and reverence for the choices we make—in how we spend our time, and with whom we spend it, the attitude with which we live our lives. It’s harder work, but I’m happier than I’ve ever been. For this, I am grateful to SMA.

In honor of SMA Awareness month, please consider sharing this post with your friends, helping to spread awareness about SMA and disability issues.