Archive for June, 2012

Moving Forward: a Van

Tuesday, June 19th, 2012

On June 8th, the three winners of the National Mobility Equipment Dealers Association (NMEDA) Mobility Awareness Month van contest were announced. We want to extend our heartfelt congratulations to Alberto Cruz, the Davert Family, and Ronald Miner. Their stories are truly inspiring and really stand as strong examples of people who are triumphing in the face of disability. We hope you will take the time to view their profiles here.

We know many of you were deeply disappointed to hear that Oscar was not one of the winners of a van. We appreciate your support and your dedication so much. We’ve come back, many times, to the saying, “It takes a village to raise a child.” We are humbled, again and again by just how large and lovely Oscar’s village is. We really couldn’t do this without you.

Interestingly enough, we actually took the news pretty well that Oscar was not selected to win a van. We knew it was a real possibility that he would not. In fact, the odds were certainly against us: a national contest, over 1,700 entrants, only three vans. We knew we had to throw our hat in the ring, as they say. And I had a really good feeling. Little did I know that the good feeling would lead to, not the winning of a van, but something much larger, much more important in many ways: the raising of awareness, the growing of community.

Thanks to our friends Donna and Tom, in the last week and a half, we have had a small taste of what having a van will be like. While they are out of town, they have loaned us their van and we have borrowed a ramp again from Fonte. It’s going to be really hard to give the van back! Oscar has been out and about in his go power chair to many places around town: Family Fun Night at preschool, ice cream at the Pittsford Dairy, family swim at Mary Cariola (including a big zooming session around the completely empty parking lot), the public market, Highland Park for a picnic, Wegmans (oh my!), the pediatrician, the Brighton Farmers’ Market, and aunt Amy & uncle Peter’s house.

It was like a miracle to see our three-and-a-half year old son racing ahead of us on the path at Highland Park. With a grin on his face, he stopped when he wanted to stop, sped ahead, faster than his parents when he chose to, and he greeted strangers at his discretion. He certainly can say “hi” to folks from his stroller, but the sense of independence he has in his power chair is reflected in his decision-making power all around. It is his own prerogative to approach someone and say hello. He is simply able to be more actively involved in his own life from the seat of his power chair than from the seat of a stroller.

The long-term goal is still a fully accessible van. Although we have experienced miracles in recent days with the borrowed van and collapsible ramp, and now know this is a possible option, it is not the ideal situation. The ramp folds in four pieces and is awkward and heavy to lift in and out of the van.  A single outing requires handling the ramp eight times: 1. to set it up at home to load the chair 2. to break it down to close the van 3. to set it up at the destination to unload the chair 4. break it down to close the van—you get the idea—two more handlings to leave the destination, and two more once arriving at home. We’re happy to do it. More than happy. Giddy, in fact! Because this is the first real sense of independence Oscar has had out in the world. But, a van that is designed to be accessible will be much easier to use. And we do feel confident we will end up with an accessible van. How that will happen is yet to be seen, but it will happen.

Many of you, learning the results of the contest, have asked how you can help, or have offered up ideas of your own. We’ve heard offers of everything from being given a portable ramp and a well-loved, well-used van to starting a kickstart campaign that would involve a van and Oscar’s art work and the work of artists around the country, as well as an offer to host a garden party fundraiser or the idea of an event at the Museum of Kids Art in Rochester, to folks simply interested in making a donation. We are humbled. We are still humbled every day by the generosity that led to the purchase of our home. We can’t wrap our heads around the fact that people still want to help.

Our heads are full right now with preparations for the FSMA conference: the challenges of air travel, the excitement of Oscar being around so many other kids in power chairs, the anticipation of how our presentation will go, the chance to see familiar faces and meet so many new families who share the intimate understanding of living with SMA. We know we will have many stories to share! Perhaps upon our return, many collective creative minds can come together and the next step toward a workable solution for a van can begin to materialize.

Until then, enjoy some photos of Oscar exploring Rochester…

Ice cream with friends at Family Fun Night

Just after ice cream at the Pittsford Dairy with Minnie, a few days before her departure.

See what a pain this ramp is?!

Far ahead at HIghland Park

Holding hands with mama on the way back to the car after the park.

Playing the drums at the playground at Highland Park!

Look who’s on his own at the Brighton Farmers’ Market!

Enjoying a tart cherry icee behind the Flour City Bread table at the market.

Looking for rabbits with cousin Asher at aunt Amy & uncle Peter’s.

Days Just Go On

Friday, June 8th, 2012

by Sally and David

Today was a long day. It’s actually been a long week, truth be told. David is dealing with a new electronic medical record at work, which is proving to be quite challenging for everyone involved. David has the pleasure of being a “superuser” which means everyone can go to him with questions and problems about the new system. And let’s just say there are a lot of questions and problems. For Sally summer season has hit again. She oversees over 70 literary youth camps and she is now in final the weeks before the launch of the camps. Thursday is her usual day off. However, today she went in just to clean off her desk that looks like a tidal wave hit it. But there were too many camp details to deal with. The desk is still a hazard zone.

In a couple weeks we head to Minneapolis for the FSMA Conference where we’ll be presenting “Tapping into Creativity: Tools for Personal Healing,” a workshop on using creativity to cope with the challenging emotions of being a parent of a child with SMA. So we are trying to pull together all the details that go along with air travel and a power chair, chair battery charger, cough assist, nebulizer, and figuring out if we need to bring the booster seat, the stroller, the car seat, not to mention all the other items that go along with traveling with a kid. We’re also in the throes of pulling together the last details of our presentation and resource packet for the conference.

Then there are the complications of scheduling band practice among three incredibly busy fathers for two shows in July that will be here before we know it. The complications of scheduling writing time when Sally has to work during her usual writing time most of this month. (Don’t deprive creatives of their creative time: the results are ugly). Then there’s the half acre of lawn and landscaping that’s slowly turning into a wilderness area, Oscar’s daily regimen of PT activities and respiratory therapies—not to mention his appointments with various therapists and providers. Nevermind putting three meals a day on the table, laundry, keeping the house from turning into a war zone.

Needless to say, we were both a little frazzled as we sat down to dinner tonight. Oscar is pretty intuitive and asked, “Dada, are you okay?”

“I’m just a little frustrated because it’s been a couple of chaotic and busy days.”

Oscar answers with, “It’s okay, Dada. Days just go on.”

And then he proudly put his rigatoni on his fingers and waved it about. Just the tonic we both needed. Days just go on.


Sunday, June 3rd, 2012

Minnie handing Oscar a flower the day he got his "go power chair"

Thursday was our last session with Minnie, Oscar’s physical therapist. She is retiring and moving to California to be with family. Minnie has been working with Oscar twice a week for the last two and a half years. She started just weeks after he was diagnosed with SMA.

Minnie holding Oscar at the Oscar-Go benefit, July, 2010

Minnie is one of the most remarkable people I’ve ever met. Her dedication to her work is unparalleled to anything I’ve seen before. Minnie stops at nothing to provide for her families and her kids. She has infinite ideas and knowledge about positioning, stretching, strengthening, mobility, independence, and equipment, all of which one would hope for from any great PT. Minnie also has (or had-she’s slowly doling it out to agencies, schools, and families before her move) an incredible equipment and toy collection. She owned so many pieces of adaptive equipment that Early Intervention (Monroe County’s birth-to-three program) providers would go to her home to borrow things that agencies didn’t own. Strollers, wheelchairs, gait trainers, standers, high chairs, bikes, bath seats, adaptive chairs, wedges, riding toys. And yes, plural for all of these items. And if a child would benefit from something that Minnie did not by chance own, she knew who to call to borrow it or where to go to buy it.

Minnie lets Oscar do apps on her iPhone in order to distract him from realizing he is working hard physically (i.e. kneeling in this photo from February, 2011).

When I was pregnant David and I had definite ideas about toys: they should be wooden or cloth, they should never involve movie characters, they shouldn’t make any noise unless they were musical instruments. Once we had Oscar we quickly realized that we might have to allow some plastic into our house but would still attempt to ban battery-operated noisy toys and movie characters. On Minnie’s first day she brought a large plastic farm model with a rotating base that, when spun, would sing a song, “The spotted cow says moo, the horse is brown and neighs, the yellow duck says quack, quack, quack, and won’t you be amazed!” It was loud and big and plastic and Oscar loved it. Minnie had him sit on my knee and use his toe to make the disk with the animals on it spin. He was fifteen months old and could barely get it going with his foot. He didn’t have the strength to kick but he was determined to try. And boy was making that toy sing good incentive!

Oscar and Minnie having way too much fun blowing bubbles and increasing lung capacity. December, 2011

At the end of that first session Minnie offered, no insisted, that we borrow the farm toy. Not knowing about her extensive collection, I was surprised and confused that she would leave a toy she might need for another kid with a family she had just met and really didn’t know, but she was convincing so we agreed. We would come to learn that Minnie had a basement full of toys (and I mean an entire room with floor-to-ceiling shelves packed to the gills) and this did not even include all the toys she had on loan all over Monroe County (which was surely at least double the toys she had stored in her home). You see, every where that Minnie went, she was thinking about her kids and what toys or equipment they would like, or would help them. She likes to think of herself as having a huge brood of grandchildren to care for and spoil. Two and a half years after that first PT session we can still sing, with great fondness and appreciation, “The spotted cow says moo…” in our sleep and we know that this practice of loaning toys is a small example illustrating Minnie’s enormously generous spirit.

Months after beginning work with Minnie, David and I were at Wegmans with Oscar in the shopping cart. We had stopped in the produce section in front of the lettuce when David and I each caught a motion out of the corner of our eyes. We looked down to see Oscar’s leg swinging. Surely the sudden stop of the cart had sent Oscar’s leg into motion. But the movement continued. And then the other leg started moving, too. Oscar was kicking his legs! He had never done this before. We were wide-eyed and giddy. Upon his diagnosis we had been told he would lose strength steadily over time. But here he was gaining strength! Two years later, he can still get his legs going in a pretty decent swing. This is only one of the many, many ways in which Minnie has helped Oscar gain strength and mobility in the last two and a half years.

Minnie supporting Oscar while he stands at the fridge, July, 2010.

After Minnie told us she was retiring I sent her an email asking her if the new PT would be able to look knowingly into my eyes and right down into my soul and with her look alone let me know she understands me completely and reassure me that indeed I am doing right by my kid even though I’m not a superhero. This is what Minnie does, at the moments I need it most. Minnie comes to each session ready to meet Oscar where he is on that day, understanding that a small child’s mood and energy can greatly affect his physical capabilities. But Minnie also comes ready to meet me where I am on that particular day. She understands the challenges and triumphs of being the mother of a child with significant needs. I have always referred to her as “our PT,” rather than “Oscar’s PT.”

Minnie consistently goes above and beyond. She has attended doctor’s appointments with us; come to our house on Saturdays to drop off equipment or examine a demo model on loan from elsewhere; sent and received text messages at all hours of day or night about adjusting equipment, Oscar’s successes, our concerns, scheduling; she even visited Oscar in the hospital on New Year’s Day. Minnie has told us about countless resources we would not have known about otherwise: Daystar (the special needs day care Oscar attended for a year), an affordable motorized bed so Oscar can sit himself up in bed, the warmest community pools in the area, which websites have the best prices for adapted toys or equipment. She has also given us countless ideas about how to adapt our home environment to best suit Oscar’s needs.

Minnie encouraging Oscar to walk in his gait trainer, July, 2011.

Minnie is incredibly pro-active. She is always thinking ahead to what Oscar will need next and how to stay ahead of SMA.  When we go to SMA conferences or read up on care of the SMA child, it is always recommended that the family has a strong team: a pediatrician, a neurologist, a pulmonologist, an orthopaedic doctor, possibly a gastroenterologist or dietician. Somewhere along the way a PT is usually mentioned, but rarely as a necessary component of “the team.” Minnie has been at the forefront of Oscar’s care for the last two and a half years. We are lucky that we have full confidence in Oscar’s medical team (and we really like them all, too)! But it is Minnie who sees Oscar every week. It is Minnie who notices the subtle changes. It is Minnie who is thinking of Oscar every single week, devising ways to increase his mobility and strength, to boost his sense of independence and confidence, to preserve and enhance his muscle and lung function through PT activities.

I could go on and on. It’s hard to know where to stop and which stories about Minnie to save for another day.  We are so thankful that she has set the bar so high, so that we can know how high to set our expectations for future therapists and also to have high expectations of what Oscar is capable of. We will miss Minnie tremendously, both as Oscar’s PT, and as the dear friend she has become.

During the last PT session Minnie reads the card Oscar made for her, which includes a message entirely dictated by Oscar with lines such as, "You're supposed to miss me."