Archive for the ‘updates’ Category

Rhode Island!

Monday, August 29th, 2016

We went to the ocean this summer! For a week! For the first time!

We rented a little house (400 square feet!) right on a salt water pond, a half a mile from the ocean, in southern Rhode Island. There was a near-constant ocean breeze blowing off the pond onto the deck (300 square feet! where we spent most of our time when we were at the cottage) and also in through the sliding doors and right through our little cottage. We read books, we played in the waves, we built things out of sand, we had lazy mornings, we found shells, we got eaten alive by mosquitoes, we stared at the sky and the ocean, we got sunburned, we explored a couple little towns, we had absolutely no agenda. It was bliss.

However, our week did not start out blissfully. Oscar woke up on the morning we were leaving with a sore throat and a runny/stuffy nose: a cold. I think we went through an entire box of tissues in the car on the way to Rhode Island. Oscar being sick is the single most stressful thing that happens in our lives, because we just never know how any given illness will manifest in his body or how serious (dangerous) it might get. Oscar and I both cried in the car on the way there. None of us breathed that easy light breath that comes with hitting the road toward vacation. My mind ran rampant with thoughts of where the nearest doctor might be, the nearest hospital, whether or not there are any doctors in Rhode Island that know anything about SMA. How much an out-of-network hospital visit might cost us. Whether or not any doctors there would be willing to listen to our pediatrician’s advice over the phone and not admit Oscar if his oxygen dipped low like it did back in June when he was sick.

We had all been looking forward to this vacation for a good solid year—from the time it was just a passing thought: hungering for the ocean, a week to just be, a real complete deep relaxation. And now that was all in question. It might not happen. My mind ran through all of the things Oscar had missed (or occasions on which he had been sick) in the last 18 months because of being sick: visiting author at school, a close friend’s birthday party, New Year’s Eve celebration with his cousins, Mother’s Day, Father’s Day, the entire last week of second grade (and his school is K-2, so he missed the end of this school altogether) including special theme days, the second grade assembly, the bus parade—and more. Now he might miss vacation, too? ARE YOU KIDDING ME?! Oh—and another thing, when Oscar gets sick, he always gets sick for a full week, so we prepared ourselves for Oscar being sick for the entire vacation.

It turned out to be a minor cold. We skipped the beach the first day (Sunday) and stayed at our cottage and read books and took a dip in the saltwater pond. Oscar had a low grade fever for 3-4 days and a stuffy nose for a bit longer. After Sunday we took him to the beach anyhow and the saltwater seemed to do wonders. My panic eased a good bit by Monday, diminishing each day and was completely gone by Thursday (we are never completely out of the woods with Oscar and illness until he is all the way better—there is always the chance for a relapse/secondary infection). Early morning walks alone to the ocean helped a great deal. David remained pretty calm the whole time.

Despite the fact that I just wrote three paragraphs about Oscar being sick while we were on vacation, it is not what any of us hold in our hearts about that trip. We hold onto the magic of being away. We hold onto the magic of being at the ocean. We hold onto the magic of not having anything on our calendars, our agendas. We also had a “google-free” vacation. No screens other than to check the weather or look up directions to somewhere we wanted to visit. Before we left Oscar even said, “I’m not going to use the iPad or watch while we’re on vacation, we’re going to be at the OCEAN!” It is profound how a week away from screen time can feel like a real detox. It was heavenly.

Oscar has seen the ocean twice before. Once when he was 9 months old (while visiting friends in Connecticut we took a couple days in Rhode Island). And once when he was 4 and we spent a day at the Pacific Ocean while visiting San Diego. So during our vacation we kept thinking, “What took us so long? Why didn’t we do this before?” David and I both have fond memories of ocean time from our childhoods that have helped shape us. Why had we not taken our boy to the ocean, for more than just a little peek, before now?

Well there are a couple answers to that question. For five out of the last seven years we have attended the national SMA conference, which is held in a different location every June. Several of those trips turned into 10-day vacations which included sight-seeing, visiting with friends or family, and the like (great trips, not relaxing at all). This year the conference was at Disneyland, same place it was three years ago—a long way to go and a location close to a lot of friends and favorite old haunts in San Diego. We decided to skip the conference this year so we could afford—from a time and money standpoint—a real ocean vacation.

IMG_4188The second answer is that this was the perfect year to be Oscar’s first year at the ocean. Oscar has grown leaps and bounds in his comfort level, confidence, and bravery in the water this year. Oscar has been doing aqua therapy since just before he turned four. Twice a week he practices swimming laps, sitting balance, trunk extension, stretching, and a whole host of other activities—most of which he has made up himself. He can do things in the water he can’t do out of the water because he has a sense of freedom in the water. And within the last year he has begun swimming under water. When he started, he was scared of even getting a drop of water on his face and now he has worked his way up to a whole variety of underwater activities.

So, the ocean was amazing! Oscar used his floaty neck ring and bobbed up and down on the waves, even the big ones. For the really big ones that were threatening to break right top of him, David would throw him up in the air over the wave and then catch him on the way down. Oscar felt the freedom of floating on his own with the ocean waves. He had a chance to ride some waves in to shore. He was ecstatic.

IMG_2996And on the last day when the waves were too big and breaking too fast for any of us to be particularly comfortable in the water David took Oscar into the shallower water right in the beach wheelchair so he could still ride the waves a little bit, even if he wasn’t submerged.

We fell in love with Rhode Island  and wish we could have stayed two weeks. We plan to go back.

 

A few more highlights from the week:

 

Oscar above one of the big waves

Oscar above one of the big waves

 

The beach wheelchair! Many public beaches have these available to use free of charge.

The beach wheelchair! Many public beaches have these available to use free of charge.

 

The view from the deck of our cottage

The view from the deck of our cottage

 

Our super friendly neighbors!

Our super friendly neighbors!

 

Frozen lemonade!

Frozen lemonade!

 

Black Lives Matter—a few words from this white woman/writer/mother

Monday, July 11th, 2016

I have not gotten much sleep this past week. In the wake of the murders of Philando Castile and Alton Sterling I have been staying up late scrolling through headlines, Facebook posts, news articles, opinion pieces. Searching. Searching for something. Searching for meaning, understanding. Searching. Searching for humanity.

I haven’t been able to find words. But I have a burning in my throat—a need to speak. Silence is not an option.

I am a person who identifies as white, and I am a writer, a wordsmith. Because of these two realities, I find writing about race to be challenging. I am afraid of getting it wrong. Sounding too privileged or ignorant, choosing the wrong grouping of words and offending people of color with my word choice.

But an honest try that falls short is better, far far better, than not trying. Than silence. Silence is deadly. Silence is keeping racism alive. So kindly read along as I may fumble (I’m sorry if I do…).

This past week two black men were murdered by police officers in the United States. Alton Sterling, who was selling CDs in his usual spot in a parking lot with a  car park lining outside a small market, was pinned to the ground by two officers and then shot to death. Philando Castile was stopped for a broken tail light, was asked for his license and registration, and was shot to death as he reached for his license.

I know that this is not new. African Americans have been being racially profiled by and killed by police officers for a long time. What is new are cell phone videos and social media. It’s becoming harder for the racism being perpetrated by these officers who are committing these inexcusable offenses to be hidden, to be swept under the rug.

I have not read a single detail that indicates that either of these men were doing anything illegal, or even suspicious. Nothing that would warrant either of them being shot at. But let’s consider the shooting part for a moment. What happened to the idea of shooting a “suspect” in the leg? To disarm or incapacitate, not to kill. How have we arrived at shooting at close range until dead?

Yesterday my family went with my sister’s family to the Renaissance Festival, just over an hour away. Our mini van filled with our white family followed their mini van filled with their white family, from one suburb through another, onto rural roads until we reached our destination. We noticed right away that one of their tail lights was out. This was nothing to be concerned about—it can be fixed at their convenience sometime in the coming weeks. Yet as we followed them for an hour I stared at that missing light and felt sick—knowing that if we were a black family, this could be cause to be killed.

KILLED. For having a broken tail light.

This is the Oscar-Go blog where I write—just every once in a great while these days—updates about how our boy Oscar is doing, what he is up to, disability issues that arise—a way to keep family, friends, and acquaintances informed of our life living with our sweet guy who happens to be disabled, a way to raise awareness about SMA and disability. So why am I writing about Alton Sterling and Philando Castile?

That’s why. And because this is the country we live in. This is the country my child is growing up in. A country where police officers are shooting and killing black men, and have been getting away with it. This is not a black problem. This is an American problem, and it affects the way I raise my child.

I am certain I have said or done things that are racist. Not because I meant to. Not because I believe in or stand behind racism in any way. But simply because I am white. I was raised by two socially conscious parents who have spent much of their lives fighting for justice, including racial justice, in many ways. Yet I am white. I am a product of the culture. My white privilege is a reality. A reality I am trying very hard to be much more aware of.

This piece by George Yancy, that was in the New York Times in December, has had a powerful impact on me.

He begins like this:

Dear White America,

 

I have a weighty request. As you read this letter, I want you to listen with love, a sort of love that demands that you look at parts of yourself that might cause pain and terror, as James Baldwin would say. Did you hear that? You may have missed it. I repeat: I want you to listen with love. Well, at least try.

You can read the whole thing here: http://opinionator.blogs.nytimes.com/2015/12/24/dear-white-america/?_r=0

It’s not necessarily an easy or comfortable read, but racism sure isn’t easy or comfortable, is it?

I also highly recommend Ta-Nehisi Coate’s book, Between the World and Me which reads as a letter to his son about being black in America.

These two pieces of writing have recently expanded my vision and given me deeper perspective on racism in America today and my own white privilege.

So where do we go from here? What do we do now? What can we do? We speak. Clearly and directly about the racism we see. We educate with as much love and generosity as we can bear. We LISTEN. To what others have to say. To the way we use language. To the way others use language. We listen when others tell us our actions or words are harmful. We open our hearts.

What else? Please tell me what else can I do.

A Snowy Miracle

Wednesday, February 17th, 2016

A small miracle happened today. We had a massive snow storm—about 18 inches in fewer than 18 hours. It fell fast enough to close down most of Rochester—which is no small feat. And when the town snow plow came by, it left NO SNOW in our driveway. That’s right. NONE.

Look! No snow dumped in our driveway!

We happened to be outside when the plow came by. The plow driver slowed to a stop, rolled her window down and said, “I’ve heard about your situation. We’re going to try something different today.”

Here’s what she did. About 20 feet before our driveway, she raised the plow off the ground, which caused all of the snow the plow was pushing to fall into the street. She then lowered the plow again as she reached our driveway, continuing to plow. She then turned around to plow the other side of the street, and when she reached the area where she had let the snow fall into the street, she drove into that side of the street and pushed the snow into our yard. Then backed up the 20 feet and continued on her way.

So a pile of snow sat in the road, on one side of the road, for about three minutes until she got to her turn-around point and came back. The maneuver of pushing the snow into our yard and then reversing to continue the usual route took about 30 extra seconds than the usual method of plowing.

30 SECONDS. Yep. For five years we have been told that there is nothing that could be done. This woman solved the problem in 30 seconds. And she was friendly, and kind—and she had been up since 2:00 am! She performed this maneuver at around 11:00 am, and again around 3:30 in the afternoon.

I will still meet with the town supervisor so we can firm up a long term plan. But it seems to me this amazing woman showed us today just what the long term plan could be. Thank you plow #56 driver!

David, Oscar, and I are truly grateful for the outpouring of support that arose from the initial blog post regarding the snow plow issue. I really had written the post to vent, in order to be able to fall asleep that night. The ensuing ideas and offers of help were amazing. We shouldn’t need an army of support to deal with accessibility issues, but we are deeply grateful we have one. Thank you for helping make accessibility a priority—for all people, not just for Oscar!

Oscar prepared for sledding this afternoon!

Oscar and David cruising through our yard!

Town Snow Plow, Meet Dragon Mama

Saturday, February 13th, 2016


We live on a corner. Not a sharp city corner with curbs, but a soft suburban corner. When the snow plow comes though our neighborhood, it comes around the corner, picking up loads of snow as it goes and by the time it gets to our driveway, it dumps an inordinate amount of snow at the foot of our driveway.

What is inordinate, you might ask. Well, just about every time the snow plow goes past our house, we have a minimum of a foot of snow at the base of our driveway, whether we’ve had 8 inches of snow, or 3. There was the time we had a big snow fall one day. So big that the plow needed to come back the next day to really clean up the roads. On this second day, absolutely no snow had fallen. Yet we had a bank 18 inches deep blocking our driveway. And I don’t mean that there is a foot or more of snow at the base of our driveway that starts at the street and goes back into our driveway a foot or two. The snow that the plow dumps is usually six to eight feet wide from the street into our driveway. Sure it tapers off slowly, but the plow is dumping massive amounts of snow into our driveway.

This year we’ve hardly had any snow. The plow has only buried us in twice so far—twice in the same day, mind you. It had begun snowing overnight and snowed a good bit, 4-6 inches, probably. That morning it probably took David only 35 to 40 minutes to shovel us out. We have a double wide driveway, so just clearing the driveway takes a bit. On that morning, because the snow was so light—the kind that just lifts off the ground and floats into the air if you gently poke it with the shovel—what had fallen into the driveway was easy to move, and probably took no more than 20 minutes to clear. But still, what the town had dumped, took another 20 easily. It continued to snow throughout the day. By the time I arrived home at three that afternoon to meet Oscar’s bus, there was another three inches that had fallen. No big deal. Except I couldn’t pull our van into the driveway because there was another foot of snow dumped by the town. I pulled into the neighbor’s driveway and made my way to our shovel. It took me about 15 minutes to clear enough of a path to pull our van in. Then I set to work on the rest of the foot of the driveway so that when Oscar’s bus arrived he’d be able to access our house. His chair can handle three inches of snow. As can our van, which is quite low to the ground, because of the accessibility modification. Neither can even think about handling a foot of snow. Had I not arrived home a bit early that day, Oscar would have been stuck in the street, completely unable to access his own home.

Each time I am surprised by the volume of snow dumped into our driveway. And each time I look closely at our neighbors’ driveways, in case I have forgotten that this is just how it works, and everyone has this much snow. Nope. Never. We consistently have snow that is at least two to three times as deep as what is in our neighbors’ driveways. And the volume of snow—the cubic feet that have been dumped—is easily a minimum of four to six times as much as any of our neighbors.

Over the years, we have called to complain. We might get the dispatcher on the phone, telling us there is nothing he can do. Telling us that this is Rochester, this is winter, we should be used to it. Once I was even asked if I had called my snow plow guy. My snow plow guy?! You mean my husband and the shovel sitting just outside our front door? David and I have each taken turns trying to calmly explain our situation—young child, wheelchair, low-to-the-ground accessible vehicle, inordinate amounts of snow. We have each taken our turn coming to a boil and eventually yelling on the phone when we weren’t listened to. And a couple of times we have even managed to get the town to bring a small truck out to clear the mess they have left at the foot of our driveway. But the two or three times they have ever done this, it has been begrudgingly, and with warning that it would probably not happen again.

So last year, toward the end of the season, when we’d had enough after a winter of heavy snowfall, I took a different tactic. I called the town, not in the midst of a crisis, and found a higher-up in the highway department to talk with. I scheduled a meeting. I brought photographs of the end of our driveway, and the end of a neighbor’s driveway, taken at the same time, after the plow had been by. He mostly listened to my case, sometimes talked over me, and then basically told me he was sympathetic to my situation but that there was really nothing he could do. He could ask his drivers to pay attention as they pass our property, but because we live on a corner, there isn’t much that could change. It is the town’s job to clear the public roads, not private property. He said I could email him if I had any further questions or concerns during the snowy season. I felt wholly unsatisfied. But I left it at that as the season was almost to a close and the winter had exhausted me.

This year, when we had our first snow fall, I spoke with Oscar’s school psychologist who is a wonderful ally and advocate for all kids, and has especially been so for Oscar and our family. He has gone to bat for us with school transportation issues we’ve had in the past. Maybe we could come at this from the angle of the town creating a barricade for school transportation. He suggested I start by calling the town supervisor’s office directly. So I left a message. And didn’t hear anything back. So I tried again. Eventually I got the assistant to the supervisor on the phone. She listened and said she’d have the _______ (name of position within the town) get back to me right away. After I hung up the phone I realized the name of the position she mentioned was actually the person I had had the face-to-face meeting with the previous winter. I called back and said no thank you. Said that he had told me he could do nothing for me. It’s time to take this to the next level. She said someone from the supervisor’s office would contact me. Radio silence for a couple of weeks.

This morning I called again, and left another message. This afternoon I received a message back, from the same person I had had the meeting with last year. He said he was eager to talk with me, as he had spoken with someone at the Center for Disability Rights, and had new information to share with me. I knew what this meant. I could hear it in the tone of his voice, in the words he chose to use in the message. He was going to prove to me he didn’t have to help me. To help us, our family, our child who uses a wheelchair and who is being denied access to his own home by the amount of snow the town dumps in our driveway. Sure enough. When I called back he let me know he’d had a lengthy conversation with someone at the Center for Disability Rights and that after relaying the situation to her, she did agree that it was not within the town’s jurisdiction to take care of personal property. There was just the slightest hint of pride in his voice. That he was right. He said he was not unsympathetic. But in fact his message was exactly that. There was nothing he could do and he was not legally obligated to do anything. Never mind that a resident of the town for which he works has a problem that needs help from the town to solve said problem. Never mind that his own department in the town is creating a barrier for a child in a wheelchair to access his own home, or access his school bus. Nope. There is a problem and he is not legally obligated to help solve that problem.

Now I can only imagine what story he told the Center for Disability Rights. Because one solution they discussed together was having someone who could ride the bus with Oscar who could help him access the school bus in the morning or his home at the end of the day. Hmmm…so the school district (linked financially to the town) would pay someone who could step off the bus and spend a bare minimum of 20 minutes, but probably more like 30—while the bus full of children waits—clearing the snow the town dumped in our driveway. There just happens to be a shoveler for hire who can hop on that bus any day there is snow. And the entire bus schedule—which is already very tight because of the one wheelchair accessible bus in the district—can be rearranged by 20-30 minutes so our driveway can be shoveled. But the town which has trucks with which to clear snow can’t spend three minutes cleaning up the mess they made. He gave me the name and number of the person he talked with. I suspect that when she hears our side of the story she will have a different view of the situation.

What if we were talking about this man’s daughter? Or father? Or himself? Would he simply say, “This does not fall within the town’s jurisdiction,” with a certain amount of pride? Or would he make sure that particular resident did not have barriers to access his or her home? I have wondered if meeting Oscar would make a difference. Putting a face to the story. But more than that. Oscar is charming. Oscar is a good negotiator. Oscar wins people over. But I am not looking for an exception for my son. I am looking for equal access for all people with disabilities.

I do understand that of course it does not fall within the town’s jurisdiction to take care of personal property. It may even be that the town is not legally obligated to clean up their messes. Nor is the higher-up in the town I have spoken with legally obligated to be sympathetic. But I am not legally obligated to back down. And I will not until we have come to a solution that is reasonable. A solution that takes into account basic accessibility needs of a person using a wheelchair.