For a long time I have looked for an outlet to share my experiences as the mother of a person with special needs. Over the years, I have seen it and heard it all. Sometimes it is the best of humanity, other times, I have serious doubts about people. Do they really think? Should they be allowed out in public without a leash? I have finally decided to share my experiences and thoughts.
First, a little about my story. I am the mother of an amazing young man named Adam. He is the light of my life. He also has a condition called Spinal Muscular Atrophy (SMA). There is currently no cure for SMA. It is a big scary disease that is caused by two parents who each have a defective gene. You can't catch SMA and you won't have a child with it unless both parents are carriers of the gene. One parent has the gene, no worries, Both parents have the gene, you have a chance to have a child with SMA. Actually you have a 25% chance of having a child with the condition. My husband and I had no way of knowing we were both carriers of SMA. At the time that we first learned about SMA, we were hearing it come out of a doctor's mouth after we had began to wonder why our precious first born son was not walking at 16 months. It was then that we learned that our lives were going to involve wheelchairs and lots and lots of doctors.
Adam would never walk and would need lots of special and very expensive medical equipment. SMA affects the muscles that control movement and breathing. We are very lucky that Adam has a milder version of SMA. Some are not nearly as fortunate and have a version of SMA that usually caused death before age 2. Thanks to changes in technology, these kids are living longer lives now. Adam has a milder form and does pretty well. Even though he doesn't walk and now uses a vent to provide better breathing support, he is very intelligent. Most people with SMA are highly intelligent. It just seems to be part of the package.
Adam is fairly quiet until you get to know him. He also doesn't like a lot of attention. Its kind of hard to be a quiet person who doesn't like attention when your primary means of getting around is a wheelchair the size of a SmartCar and a service dog that is his constant companion. He draws people's attention every where we go. People stare and make him uncomfortable. Sometimes people decide that he is their personal good deed for the day. The walk over and try to start a conversation with him. The first thing they do is pull out their pity look and the sickening, I feel sorry for you smile. Then comes the VOICE. The high pitched, you are special voice. This is by far the most annoying thing you can do. Adam hates it and will not talk to you if you use the VOICE with him. I will remind people that he is an adult and doesn't like to be talked down to. And then they get defensive. "I wasn't talking down to him." At that point, we walk off leaving the person with their feelings hurt because their good deed for the day was turned down. On the other hand, if you speak to Adam in a normal tone, like the intelligent person that he is. You will likely get a few words from him. Don't expect much more that that. He is quiet, just like his dad. You have to give him time to get to know you.
Some people take things even further. They want to touch Adam or hug him or any other invasive activities. I once had a lady stop us in the grocery store and demand that her child hug Adam. Adam didn't want to be hugged and her child didn't want to hug him either. I finally had to tell her that I would rather not have her child hug Adam. Adam is super fragile from a respiratory stand point and the slightest cold can put him in the hospital or even kill him. In 2009, a family member hugged him with a little cold and nearly killed him. He was in the hospital for 6 weeks and in rehab recovering from Tracheotomy surgery for 6 more weeks. We were away from home for 3 months because of a hug. Please understand when I ask you not to shake his hand or touch him for this reason.
We go to an amazing church, Willow Creek Community Church in South Barrington. They go out of their way to show how awesome people with special needs are. They do special programs and theatrical productions showcasing the talents of people with special needs. They recently built a dedicated area for the special needs population of our church with state of the art resources to enable those with special needs to attend church. It really looks amazing. We have not experienced it personally. Adam is able to go to the service with relative ease. As long as we can find wheelchair accessible seating with a monitor, we are good to go. (The monitors are necessary because you can't see around the people standing during worship) That really is the only accommodations he needs. Last week, the church leadership had an unveiling of the new special needs area. There were videos showing the new space and the pastor talked about how proud they were to have made this area so that all could attend church according to their personal needs. The entire congregation was invited to tour the new space. We decided to skip the tour since it really isn't of benefit to us. And Adam hates crowds. As soon as we heard them start talking about this great space for special needs people, Adam and I looked at each other. We knew what that meant. Adam was going to be mobbed by all of the people who want to do their good deed for the day and bless the special person in a wheelchair. Its like people see him and run to him to be able to show how awesome they are to show love to the special person. This particular special needs person, doesn't want the special attention. He wants to be ignored or treated just like the rest of the people. I am sure there are some personalities that enjoy the attention. Adam is not one of them. Go about your business folks, keep moving and Please Don't Pet the Special People.
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