| PARENTING
By Jessica Haber
I have shared with you in past columns some of the physical difficulties I had when my son was in infant and the adjustments and changes that I made, as a mother with a spinal cord injury, to take care of him. As he grows older, we have different challenges to face and more opportunities to find creative solutions. It is no longer just a matter of adapting baby furniture and modifying my home; now it’s also about being a mother with a disability in the often inaccessible world outside.
Going to the park and the playground is a fun way for my son to spend a day, but there are a lot of areas in a playground I am unable to get to. Going up and down a slide or playing in a sandbox are just not possible in a wheelchair. My son is very understanding and has grown accustomed to my cheering him on from the bottom of the slide or watching him from the edge of the sandbox. He is also big enough now to get on a swing by himself and small enough to let me push him.
Summers at the beach present another challenge: sand. My son’s favorite summer hobby is walking along the shore collecting seashells. We easily have a hundred shells at home—and I have never been with him to pick up even one. He will ask someone to carry me down to the water or try to push me through the sand so I can join him, but I’m just not able to. This, of course, is terribly frustrating to me; but it also motivated me to think of other fun things we could do together outside.
Instead of going down to the beach, we walk on the boardwalk. We can both enjoy it and even though there is no sand to build in or water to play in, there is plenty to see. In our area there are even a few playgrounds along the way we can stop and play in. We also found a couple of nice, accessible miniature golf courses. There are also some local marinas and piers where we can park and stroll around. Luckily, we also have friends and family with beach cottages. We can go the beach but still have the luxury and convenience of having a cement path right along the sand.
In the winter when there is snow on the ground, my son wants to be outside building snowmen or sledding down the hills. Although I can’t take him sledding, there is usually a clear path in front of my house so we can build along the edge or have snowball fights. In the colder weather, I also try to find local indoor things to do. We have a small children’s theater near us and we go there once every couple of months and enjoy a play. The local library also has some age appropriate programs, or we just go to the children’s section and enjoy reading books or playing computer games. There is also a great children’s museum nearby that’s very hands-on and accessible—not to mention a lot of fun.
One of our favorite things to do together is to take a train ride into New York City. We live right outside the city, and in the last several years, the Long Island Rail Road, subways, and buses have come a long way in their accessibility (thanks in large part to a lot of pressure from United Spinal Association). My son and I will pack a backpack, take the train in, and either walk or take the subway to different places in Manhattan. These trips are always a real adventure and we always have a lot of fun even if we just stroll around for a little while and take the train straight back home.
My family and friends are always willing to help out and will join us in different activities. They will step in when needed and do with my son the things I can’t do. I am thankful and appreciative, but I don’t always want to watch from the side; sometimes it makes me sad. I have gotten creative in choosing activities that are both fun for him and easy for me but I don’t to participate in. It’s nice that we have found things he and I can do together that I don’t need assistance for. I love it when we can just take pleasure in what we’re doing without either of us being upset that I can’t do something. Those activities become very special and are something to watch unique the two of us can share.
I don’t know many other parents with disabilities. I would love for from the any of my readers to share some of their stories with me. It would be nice to hear not only of your frustrations as a parent, but how you deal side.” with them and the solutions you come up with.
Have questions or suggestions about pregnancy or childcare for women with spinal cord disorders? Write to Jessica at jhaber@unitedspinal.org.
