Archive for April, 2012

Oscar, the Artist

Tuesday, April 17th, 2012

[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.

Van Contest Update

Thursday, April 12th, 2012

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!

Updates/things to keep in mind about the van contest:

1. Obviously the website is finicky. The contest site is receiving more traffic than was anticipated- ultimately this is a good thing. Thanks for your patience while it was down for several days and then back up and then down for a few hours and back up and down for a few more hours and…well, you get the picture.

2. New promo code!!!: 586 is an additional code (posted by Agor Enterpsies) to be used to make your single vote count for five! Just to clear up any further confusion-the promo code (753, and now 586) can be used once, only, to make your vote count for 5. The code is associated with Agor Enterprises, a local dealer right here in Rochester that is helping spread word about the contest (it is by chance that we found out from them about the contest)!

3. Voting, when and from where: it appears you can only vote once in a 24 hour period, not once a day. So, for example, if you vote at 9 pm on Tuesday night, you can’t vote again until after 9 pm on Wednesday night. (At least it appears that this is how it is working). You can also only vote from each IP address once in a 24 hour period, so if you have multiple devices/computers on the same network, you can only vote once from the whole IP address (annoying, for example, that David & I can’t both vote for Oscar in the same day-but every entrant is up against the same issue).

4. Who wins and how it happens: So, after May 13, the folks running the contest will review the essays or videos of every one who is in the top 10%. Three winners will be selected from that 10%. So, what we need to do is keep Oscar in the top 10% (he is currently hovering in the top 1-2% thanks to all of YOU)! After that we hope that his cute face will win the folks over and they’ll decide to award him a van! Winners should be announced by May 21.

5. Local Press: Yes, we’re interested! Thanks to Margaret Paige, Oscar has already been featured on #the ROC Daily on Monday.

6. Fliers to hand out: Here is a van flier you can print out and share with folks to help spread the word.

7. Poetry Reading: Oscar’s mom will be giving a poetry reading in Phelps, NY (45 minutes east of Rochester) this Sunday, April 15 at 2 pm at the Phelps Art Center (15 Church Street, Phelps, New York 14532 I will primarily be reading work related to Oscar.

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.

Vote for Oscar! Accessible Van Contest

Thursday, April 5th, 2012

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 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!