Supporting families with special needs
We don’t live in a big city. Getting around for us means driving to the store, the doctor, the movies, wherever, parking and walking into that establishment. Even if we are attending a concert or going to a more touristy location, our local transportation is direct and pretty easy. When my son is using his wheelchair or power scooter, we can generally work out how to get around. Our son, however, is currently attending the University of Pennsylvania in Philadelphia, and he is set up with an apartment just off campus. This makes it easy for him to get to and from classes, and thankfully he can find most basic needs within a block or two of his building. Challenges arise, though, when we come to visit and want to venture out. Philadelphia has subway trains which travel east to west and north to south, and at many stops there are elevators to get up to the street. The real mess occurs when you want to transfer between the East-West and North-South lines where they meet. There is no elevator access from one train to the other. We figured out that, if my son got on the East-West line, he would have to stop at least one station short of the junction, go up to street level, and walk or use his scooter to get to the nearest accessible northbound station. This makes no sense. The vast majority of stations are accessible if all you want to do is get on and off the East-West train. Why, if you’re going to invest in accessibility at all, wouldn’t you prioritize this crucial junction-point?
Our experience in New York was even better. I will concede, there was never a station that said it was handicapped-accessible where we could not get on a train. But it seemed that accessible stations were much fewer and farther between than in Philadelphia. On top of that, it was a downright mystery, from day to day, how to get to the train going in the direction we needed. Just as we thought we had figured out the system’s schedule, it changed. I also really enjoyed the fact that elevators in the New York subway seem to double as public restrooms. Other fun obstacles included gaps between trains and their (marked accessible) platforms that sometimes rivaled an Evel Knievel jump. The train could be up to six inches higher than the platform and about the same distance away. We tried various methods of entry, including my wife helping our son walk onto the train while I ran myself and others over with the scooter. Even when we managed all that, the nearest station we could use to visit the Metropolitan Museum of Art still required a forty-five-minute walk through Central Park.
Still, our vacation was fun, even if my fitness watch said I walked fifteen miles a day. I guess all that is necessary if we want to have adventures together. Overall, a few bruises on my legs and some sore feet are not too severe. We have to continue to push ourselves beyond what’s comfortable for us; that’s the only way anything ever changes. It can be scary. We may have to improvise or change our plans entirely. But if we don't try, we never get to have beautiful experiences and learn just how much we really can accomplish.
Have you noticed that certain cable television channels will play a film over and over again in a month? I sometimes wonder if they pay a flat fee to play it for the month, so they make sure they get their money's worth.
The show on one of the channels this month is The Martian. If you are not familiar with this movie, a crew of astronauts is on mars when one of them gets blown away in a storm, and the rest of the team leave him thinking he has died. He, of course, is not dead and then has to figure out how to survive alone and with few supplies until he can be rescued. It is very much like MacGyver on another planet.
As I was watching the movie it came to me; this is just like being a parent raising children with special needs.
Many of the big things we have purchased had to have to be modified to fit our family, adding bars to bathrooms, doors, and stairs. We bought our camper so we could camp and enjoy nature easily, we traded in the first one we had because it didn't work at all. I have an old jeep, and I keep a step stool in the back so I can get my son and short wife in the seat. When we bought our home, of course we had to love it, but we also had to make sure it functioned for our whole family or that we could modify it so it did. When our son went off to college, we stayed longer than most parents to make sure he had what he needed to get by without us. The school choice of a small school also meant he would not get lost in the crowd.
As parents, I think we have approached each stage of life with a readiness to modify and adapt to the situation. I also believe we have made sure those working with our family have had the same adaptability, assuring us that we are making the best of our unique challenges.
I see other parents doing the same thing for their families. I love seeing groups on Facebook and other places sharing information and tips on how they are adapting and figuring it out.
To all you MacGyver parents out there, we salute you.
Last night I was able to catch an episode of Speechless. If you’re unfamiliar with the show, it’s about a young man who has cerebral palsy, his family, and their adventures. The episode revolved around the mother finding out that her son’s school has a Homecoming bonfire every year at a very inaccessible beach, and giving the school grief about it until they decide to cancel the event. This, of course, upsets everyone else and makes life at school tough on her son.
The show sometimes goes over the top portraying what special-needs families go through, but there are moments when it hits the nail on the head. This episode made me think about the differences between advocating for my son and bullying others so that I can achieve what I think is right. I have always wondered about how best to state my case, and where the distinction lies between reasonable and unreasonable accommodations by others. I want my son to have every opportunity every other child has, but I am just not sure where to draw the line between walking away or charging up the hill and planting a flag in the name of what is right.
Some people may think they know your family, or how you should parent. We say they don't know what it is like to be in your shoes. Our latest video, we try and explain a little of what they don't know.
Last week my son and I took a trip to look for an apartment for him to live in this fall. We are so proud of him finishing his Master’s and moving on to the Ph.D. Looking for an apartment takes on some extra meaning due to his cerebral palsy and his use of a mobility scooter to get to and around the campus. The school maintains a website you can peruse to find housing options. It also includes parameters by which you can narrow your search, like price, location and even whether or not the space is disability accessible. We made a list of the apartments he could afford, and a few he could not, and set out to see all of them over a three-day trip. I have to say that what these apartments mean by "accessible" varied widely from place to place. Some of them made me question how they even qualified.
The first high-end apartment complex we went to had a concierge and someone manning the door, so it would not be hard for my son to get into the building, it had spacious elevators that he could enter and exit easily. Most of the doors – to the pool on the 6th floor, to the meeting rooms and gym and the apartments, were manual and required a fob to open. These would be a little more difficult to manipulate. At least each floor was flat once you reached it. There were washers and dryers in each apartment for laundry and trash chutes on each floor. The problem with this option was expense. Top dollar got you lots of nice things, but he is paying his own expenses out of his stipend, and he still needs money to eat. If he could have lived on the free Dunkin’ Doughnuts in the lobby every Monday, we would have been fine; otherwise, we had to keep looking! We looked at others which cost just as much and found different results; one had electric door openers and one did not, one had wide halls and open floor plans to maneuver in, some apartments he would not have been able to turn around in. What baffles me is that all of these "expensive" options occupied new buildings, none older than ten or twelve years, so how did some of them get away with such poor ADA compliance?
