Oscar-Go

[Vote every day for Oscar to win a van! Click the link HERE and use code 753 or 586 if you haven’t yet!]

When Oscar first was handed a pen at about 14 months, he held it with a perfect two-finger grip, instinctually. He started making circles and spirals by about 18 months. Oscar’s OT pointed out that this is somewhat unusual. Then, at two and a half, Oscar shocked us when he drew this self-portrait. Unprompted, entirely of his own volition. We immediately found a spare frame and hung it in the kitchen.

Several months later, still not yet three years old, completely out of the blue (literally and figuratively) one day, Oscar stunned us again with this drawing of “Cape Man,” a made-up superhero based on a small action figure-like toy he had seen at a friend’s house a few months prior. These two drawings were exceptions to the rule. He regularly drew pretty cool “designs” but not necessarily reacognizable, representative drawings.

Recently, however, this boy is surprising us on a weekly, if not daily basis, with his drawings. He’s working with an art therapist who says he draws at about the level of a seven year old. His service coordinator noted today that he has developed a real style to his work. I hadn’t thought of it that way, but when she said that it rang true. Often, when Oscar is drawing, if we try to ask him a question he says very pointedly, “I’m concentrating!” (subtext: Don’t talk to me and please leave me alone). Check out some of his newer work:

First Pirate Boat

Some "Characters"

And here’s the artist at work one sunny afternoon recently:

In this next drawing, the blue is a monster. The red is a scene from Finding Nemo, which he watched for the first time in the hospital in January. We recently borrowed it from his cousins and after watching the scene in the dentist office he decided he did not like the movie any more and we should give it right back. This is the dentist office scene that he did not like. For several days after he drew it, he refused to look at it or talk about it.

Some superheroes for cousin Emily’s birthday (he even wrote his name sideways in green-the “S” on top was the first S he made and he decided it didn’t really look like an S so he needed to rewrite it below the O):

Teeth Man

Oscar drew Teeth Man, another superhero, when he came to work with me for about an hour one day last week. A co-worker and I were talking and Oscar was sitting quietly and intently drawing. Suddenly in the middle of drawing he looked up and looked right at me and said, “I like being with you.” I nearly melted.

I love that when Oscar draws in pen, he draws minute details. Sometimes he spends a long time on the details and then he colors them in, coloring over them completely, so they are indiscernible. We have to be mindful of what we take away from him to save and what we allow him to keep working on as long as he wants to. His process is important to him, but sometimes to “save” the artwork, we decide when it’s finished. He’s filled a notebook and a half since the beginning of the year and that doesn’t include all the drawing he’s done on loose pages.

Pirates on a Pirate Ship

Oscar drew this yesterday, while I was at Wegmans. I don’t know what this kid is going to do next. But I do know we need some picture frames and some nails. We have plenty of wall space. We’ll just have to designate an Oscar gallery.

Vote for Oscar every day! Click the link HERE and use code 753 or 586 if you haven’t yet!

We are filled with gratitude and hope by the incredible outpouring of love and networking that has happened in the last week! This contest is for National Mobility Month and its primary purpose is to raise awareness about disability. Well, then, we have already been successful! And we can continue to grow that success!

8. Oscar’s current status and rank: At the moment of writing this post, Oscar had nearly 6,500 votes and ranked 12 out of over 750 entries! Pretty impressive!

We are humbled by the support and the coming together to raise awareness for SMA and people with disabilities. Van or no van, this contest is a winner!
Again, a million thanks from the Merulla-Bonn family.

Despite a rocky start, with the site being down for 4 days, the National Mobility Awareness Month contest to win a wheelchair accessible van is up and running! PLEASE VOTE!

Every day from now until May 13 go to www.nmeda.com/mobility-awareness-month/heroes/new-york/rochester/545/oscar-merulla-bonn and vote for Oscar. The first time you vote, use code 753 and make your vote count for 5!

This is such an incredible opportunity for our family. On the one hand, I know it’s naive to think we could win a national contest. On the other hand, someone has to win it (three vans will be given away, actually) and I am really hopeful. The timing of it couldn’t be any better as we found out about the contest just days before Oscar’s “go power chair” arrived.

And just for fun…

Oscar the fish doing his nebulizer with Dada the diver.

More soon!

So what has changed in our house since Oscar got his chair a week ago? The quality of his smile. For those of you who know him, you know he has this beaming smile that will stop you in your tracks. But in the last week, it’s been even bigger and brighter than usual. He is delighted that he can go to his room all by himself. He is delighted that if Dada is going into the living room and he wants to go too, he can just do it. He doesn’t have to ask someone to carry him. And he is really delighted that when we ask him to go somewhere (to the kitchen for breakfast, or to the bathroom to brush his teeth) he can go in the opposite direction of where we’re asking him to go. He can be naughty in a whole new way, a three-year old way!

Yesterday, when he saw me adding dirty dishes to the dishwasher, he asked to help. I was able to hand him spoons and forks that he could drop into the silverware receptacle in the dishwasher – and wow you should have seen that grin! He was so proud of himself!

Oscar is taking delight in the power of being able to move his own body through space in the way he wants to. He will often do a 180 or 360 just because it feels good, and because he can. He finally has some control over his own environment, and a new sense of belonging in space, I think. Last week he was able to play chase with the neighbor girls. He kept saying, “Do you want to zoom with me? Run, run!” He hasn’t been able to engage in real physical play up until now. This opens new doors, especially in his interactions with other kids. He’s also been asking to race us in the house, and he always seems to win!

See him in action…

Up the ramp:

youtu.be/x6yr7l00A_E

Silly in the Kitchen:

youtu.be/eN_LnXh4eOM

We’re excited to be able to keep you more up to date on the goings-on of Oscar! We also hope this blog will help raise awareness about SMA and disability issues, as well as contribute to the online SMA community. We hope to post at least once a week but as Oscar recently said one morning at breakfast, “Life is life,” so please forgive us if we do let more than a week lapse between postings.

We couldn’t think of a better time to start this blog than just after Oscar got his “go power chair.” Last Thursday was one of the happiest days of our lives! Linda and John arrived from Fonte with the chair at about 9:30. With the incredible atypical March weather we’ve been having, we were able to stay outside all morning with the chair. There were a good two hours of adjustments to the positions of various parts of the chair: armrests, joystick, foot rest, head rest, lap and chest straps, and height and angle of back cushion. Oscar is so little that with the footrest at its highest position, his feet still don’t sit flat, so small blocks will be added to the foot rest for him. Ultimately this means he has a ton of room to grow with this chair, which is such good news. Time will tell, but it sounds like he should be able to get about three years of use out of this chair.

The adjustments continue

Throughout the adjustments, Oscar waited as patiently as a three-year old about to bite into his first real taste of freedom, independence, and speed could wait. At various times he was given the go-ahead to test drive his new wheels to see how the adjustments were working. At one point he took off into the neighbor’s yard to “hide,” at first, behind a tree trunk and then he disappeared in earnest behind their evergreen shrubbery completely out of view. As Linda called him to come back for more adjustments, he delightfully refused. We were all so thrilled. Oscar can begin testing the limits now in a way he has never been able to before.

Watch Oscar zooming away here:

youtu.be/w8n3tbp-E-E

Hello everyone!

It has been quite some time since we have sent an Oscar-Go update. Please know you have certainly been on our minds. We thought we could wait until all the painting projects were finished and we had art hanging on the walls to send an update that would include photos of the new house, but clearly that’s going to take more time than we expected! We don’t want to keep you in the dark any longer. So, finally we’ve posted a few photos of the house (and of Oscar!) on the gallery page. We are thankful every day for this house and everything you all did to help make our move possible.

Oscar continues to do well. He recently had his routine 6-month follow up with both the neurologist & pulmonologist: he is in good health. He continues to work hard in PT and OT. And he continues to be a stubborn two-year-old who often attempts to talk his way out of the activities he doesn’t want to do! He recently acquired his own mobile stander, which allows him to propel himself while in a standing position. Soon he’ll also have his own gait trainer, which will allow his body to go through the mechanics of walking while being fully supported. Two other new acquisitions for Oscar are a potty chair and “big boy” bed (a mattress on the floor, for now). He has made good use of both so far and we will continue working toward full-time use of each!

Transition is on the horizon! Oscar will be starting preschool in the fall, 5 mornings a week. We are not ready, though we suspect that he’ll do just fine. We’ll be leaving Early Intervention (the county-based organization that has been providing his services), and Daystar (daycare for medically fragile babies where Oscar has been attending two days a week) kicking and screaming. Oscar, and our whole family, has been taken such good care of. Oscar will be attending Rochester Childfirst Network for preschool and they, along with Brighton Central Schools (our home school district), and SKIP of NY (our service coordination agency) will manage all his services. Our interactions with RCN, so far, have been nothing short of wonderful, so we are feeling confident that Oscar will continue to be well-taken care of.

In May, we traveled to the Baltimore/DC area for a great week away visiting family and friends. While in DC, we attended the Fight SMA conference, a much smaller conference than the Families of SMA conference we attended in CA last year, but equally as valuable. Many of the same researchers were there and it was wonderful for Oscar to meet some other friends in “Go-gahs” (Oscar’s word for “wheelchair”). We reminisced about how fearfully we approached the foreign land of last year’s conference and marveled at how much more at home we feel within the SMA community now (indeed, it is a community). Nonetheless, we are still adjusting to this new normal we are living. It can be pretty exhausting keeping up with Oscar’s appointments and therapy schedule. We often feel like we’re behind the eight-ball, trying to incorporate all we learn from PT & OT into Oscar’s daily schedule. There never seems to be enough time for everything. Yet, Oscar is thriving.

We are excited to say that we’ll be participating in the 8th Annual SMArt Walk for a Cure, a benefit for the western New York chapter of FSMA on August 6 at Beaver Island State Park, just outside of Buffalo, NY. We’d like to invite you to be part of Team Oscar-Go and walk with us. To register, visit our walk-n-roll home page www.fsma.org/LWC/teamoscargo and click on the “Join My Team” link at the bottom of the page. If you’re not able to join us on August 6, and you’d like to make a donation, you can do so through the above-mentioned link or by contacting us directly, as well.

Please don’t hesitate to contact us regarding the walk-n-roll, or anything else, at info@oscar-go.org. We hope this finds you all well and we thank you again for being part of our amazing community.

All best,
David, Sally, & Oscar

More than a week after the Oscar-go benefit, we are still floating above the ground. We knew this would be a wonderful event, but, never in our wildest dreams could we have imagined the event being so hugely successful. RoCo estimated somewhere between 500 and 600 people in attendance! We don’t have a final tally on how much money was raised because there is still money coming in! However, the current count is over $21,000!

We feel so blessed by the incredible community we have here in Rochester, and our extended community that reaches out beyond city, state, and even national borders. Although we are both writers, it is incredibly difficult to find the words to match our gratitude. We feel buoyed by the love and support of all of you.

The goal of the fundraising part of this event was to gather funds toward a down payment on an accessible home for Oscar. That goal has certainly been met! And, as the universe would have it, we think we have found that home. We had been anticipating a move next spring, but just 5 days after the Oscar-Go benefit, we looked at a house in Brighton that is fully accessible, already. We will keep you updated!

We would like to be able to thank each one of you individually, and we hope, that over time we will be able to do so. The sheer number of thank yous, paired with the recent developments on the house front, may delay our ability to get to everyone. There are over 170 identified individual donors (not to mention countless anonymous donors). In addition there were over 50 businesses and individuals who donated items for the silent auction and raffle, over 20 volunteers helping with the event and there were over a dozen people/establishments who donated food and beverage for the night of the event.

We would like to extend a special thank you to the six individuals who became known as the Oscar Ensemble. They donated countless hours and valuable skills toward the planning, promotion, and execution of this event. They are: Donna Kowal, Tom Kowal, Joe Tunis, Alexa Scott-Flaherty, Jon Itkin, and Garrett Rubin.

Oscar really enjoyed his party! Although the crowd was overwhelming for him at times, he marveled at the “O” t-shirts that all the volunteers were wearing and he was thrilled to see so many of his favorite people all in one room. We have a very happy little boy and we thank all of you for being a part of his life, a part of our community and of our support network. Our gratitude is immense.

With big hearts,
David & Sally

To view more photos from the event, please see the Gallery page!