Supporting families with special needs
Being a husband or father is always tough, it isn't. It is that when your loved ones are sick, really sick or they have a special need. There is no worse feeling than sitting at a bedside, even as they sleep, and feeling helpless to fix anything.
I write this from a hospital room where I have been living for the past five days. I have not gotten good sleep any of these nights due to all the various machines going off, nurses walking in to check on my wife or general meeting the needs of my wife as she recovers from surgery. I am the fifth wheel in this machine, the guy who can get ice or water. I can fluff a pillow or straighten a sheet but let's face it, I am an extra appendage. If I were missing, someone who is way more qualified would help. Even when our son was having surgeries to correct many of the effects of having cerebral palsy, I felt helpless. He had a dozen operations starting at six months old. Each one was heart-wrenching. Seeing him lay in the hospital bed or on our couch instead of doing kid things, ripped my insides out! I know each one made things better in the long run, but it didn't make the moments any easier.
I am a guy who fixes his car's brakes. I also change the oil in the car. I do house repairs. When the oven went out, I figured out what part was not working and replaced it. My wife always says I am handy to have around and I take pride in that.
But when it comes to being at the bedside while they suffer through the pain and recovery, I feel like a fish out of water, gasping at the air trying to find something that will make a difference and make me feel useful.
I know it doesn't always come out looking like I have compassion, I am after all, still me. I want the best for my loved ones. I want to see them get better and when it isn't going the best, I get a little abrupt. I don't mean to be. It is just my way of wanting, like the oven or car, to fix it.
My wife in these situations is much more prepared. She is a registered nurse, so when the doctors and nurses find out, they all begin to talk in "medical speak." It reminds me of being in the middle of a group signing or speaking German. All I can do, in the words of the penguins of Madagascar cartoon is, smile and wave.
I know that moral support and prayers are significant and make a difference. I also know that being there, getting the water and helping with trips to the bathroom and making sure someone is advocating on their behalf is very important. It just hurts more than anything I know to watch them suffer, and I want so badly to fix it.
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.
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.
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.
