Wednesday, December 11, 2013

"Mom, what's special needs?"

Since my boys were little, we have talked about their disabilities based on how much information they wanted to know. We never shied away from telling them, but we also never brought to attention their differences from "typical" kids. We always try to celebrate what they can do, even when they are seriously struggling with something that they can't. We wanted them to accept themselves apart from labels, feeling confident in their abilities, not their disabilities. We have also always explained it to them in matter of fact type ways with very little emotion behind it so that they didn't think that we were upset about it. Now that they are older, however, we are beginning to explain much more to them.

When the boys were 4, Andrew got his first wheelchair. This was nerve-wracking for me because it was a visual indicator to the general public that Andrew was different. Of course, Andrew immediately embraced the wheelchair as his mode of transportation and was ecstatic to use it to gain freedom and independence. I thought for sure that getting a wheelchair would be the start of the questions about why he couldn't walk and how he was different.... but I was wrong. Andrew saw the wheelchair as an extension of himself and he could do everything else that other kids could by using it or by crawling. When other people asked him why he was in a wheelchair, Andrew would respond, "That's how I get around! You walk, I use a wheelchair. That's how God made me." The usual response was, "Ok! Do you want to play with me?" or "Can I try it?" to which Andrew would usually say yes. Both Andrew and his peers took it at face value and didn't see any need to dig deeper.

When the boys got to Kindergarten, they first began hearing the term "special needs." They were in a special needs class (or exceptional children, as they call it in our state), on a special needs baseball team, and took special needs swimming lessons. They were mainstreamed for a good portion of their school day and saw that class as the "regular" class with the "regular" kids and their exceptional children class as the "special needs" class. Even though they began noticing a distinction, the direct questions still stayed away. They were happy with how their school day went and did not really understand that what they did was different from anyone else.

In first grade, Andrew began noticing differences. He started talking about wanting to take a bus to and from school. Andrew was in a regular class for almost the entire day at this point and realized that the majority of the kids in his class rode the bus. I explained to him that because of his wheelchair he would not be able to take the same bus as his friends. I explained that the bus that he rode would have to be the one with his friends from his "other" class because that was the bus that had a lift for his wheelchair. This was the first time that Andrew declared to me adamantly that he did NOT have special needs and did NOT need to ride a different bus.

The second year of 1st grade and into 2nd grade, Andrew was fully mainstreamed into a regular class. He began saying that he didn't want to play special needs sports (so we just called it "baseball," "soccer," "football," and "swimming"). As long as we didn't call something special needs, he was ok with participating. If he overheard someone describing him as having special needs, he would say, "No I don't, I DON'T have special needs." He still had friends from the special needs class and loved to be around them, but he hated the labels.  He had caught onto a negative connotation with the word, "special needs." He didn't see himself as different from anyone else...everyone was accepted as the same.

After his leg surgery in March of this year, Andrew really started to ask questions about his and his brother's disabilities. He knew that his legs didn't work like other kids and finally wanted to know why. I explained to him that he was born early and was sick (which he already knew) and that because he was born early that he had some bleeding in his brain that hurt it and that now his brain has a difficult time telling his legs what to do. I explained that he has Cerebral Palsy, but that only means that he has to work harder to do what he wants to do, not that he can't do something.

At first, he was very distraught about the answer. He was sad that he was born early and sad that his brain doesn't talk to his legs correctly. He was also frustrated that he had to have surgery when he just wanted to be in school like everyone else. Since we were in the midst of his initial recovery period, he was convinced that he was weaker than any other kids and that he was never going to get better. I comforted him and let him know that he was actually MUCH stronger than most kids and that most kids haven't had to go through as much as he has. I explained to him that he has to be stronger so that he can work harder to achieve what he wants. I also talked to him all about the things he is good at and how he never lets his wheelchair hold him back from trying anything. He left the conversation feeling more confident and with a far greater understanding of why he is the way he is.

Since those initial questions, there have been many many more questions. He is very scientific in nature and wants to know the details of how things work in his body. He is also very curious about Benjamin. He wants to know all about Autism and why Benjamin does the things that he does. I leave the answers as matter of fact and focus on the positives in their lives. It usually ends with Andrew feeling ok with what has been explained.

A few weeks ago as we were sitting at the dinner table, Andrew asks, "Mom, WHAT is special needs?" I paused and realized that I had never truly explained to him what that phrase meant. He had used it in context many times, so I had just assumed that he knew what it meant. I responded, "Special needs just means that a person needs a little more help than someone else to do certain things. Some people can't hear or see as well as others and need glasses or hearing aids. Some people can't talk well and need help from computers or sign language to communicate. Some people use wheelchairs or crutches to get around and sometimes need help with things like stairs or opening doors. Some people can't pay attention as well as others. That's all that special needs means." He says to me, "Well... I DO have special needs. But, I can hear well and see well. I can talk and write well. The only thing wheelchair. So, I am going to work really hard with my walking and work really hard with my crutches so that way I won't have special needs anymore and THEN I can ride the regular bus with all of my friends." I smiled at him and told him that I was proud of all that he has been doing and how hard he has been working. I also found it interesting that almost 3 years later, he was still upset that he wasn't allowed to ride the regular bus. It is honestly probably the very first encounter in his life with something that he truly wanted to do but couldn't find a way to do it, and that bothered him.

I hope that some day soon he will be able to ride the bus with his friends. I hope that our approach will allow him to be able to accept himself and love himself for who he is regardless of the labels put upon him by others. I hope that he will accomplish all that he wants to do in his life in spite of the nay-sayers and the expectations of the world around him. I also hope that we have made the correct decision to let the boys set the speed on the amount of information that they want about themselves. So far, I feel like it is the best approach for them.

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