Bumps along the way

So I am sitting here thinking about the struggles we face having a Deaf son. Here is a snap shot of the mountains we climb just to get through a typical school day.

You cannot imagine the trials of the first months of school this year. Before the first day we made sure he had all of the assistive gear he would need to manage his mainstream school environment. I tried to future trip and think of every scenario that he might encounter. We loaded up on batteries for all of his technical needs. We carefully analyzed his nutritional requirements and acted like Ninja warrior preparing all of the necessary equipment. We stocked up on all of his communication and protective needs. We were ready to roll.

Well despite our efforts it was a mess. The expensive scientific calculator with backup batteries we purchased for his advanced math class was lost by the second week. The phone we got him for safety was taken from him for texting his new friends during class. His technical needs were a bust. When I went with him to get his phone back I am told most sixth graders do this not just the deaf ones.

I bought reams of paper, folders, pencils, pens and notebooks for his school work but he continued to misplace things and procrastinate on his assignments. He had all of the supplies and skills needed to communicate in English but needed to learn how to schedule and organize. At his new school he has tons of research and art projects even in math. This is much more challenging then elementary school and that along with rehearsal schedules and his social life he has been overwhelmed at times, but so have the hearing kids.

I had purchased a tons of little plastic containers for his healthy lunches I wanted to pack. Instead of eating my offerings with reverence my son lost his lunch box three times at the start of the year. He also discovered the vending machines. I refused to be defeated so in perfect helicopter mom form I purchased a super high tech backpack with a built in thermal pocket. He liked this option because they don't have lockers at school and the kids carry way to much around all day. This worked well except he would toss his backpack down and all of the containers would break. I solved this by buying a metal lunch container. Problem solved.

We bought him a very cool coat to keep him warm and protect him from the elements. It was a black snowboard coat and he loved it. All of the kids at school had coats like this! Well he lost it the second week of school. I took him down to lost and found and dug through the mountain of dark coats that smell of teen angst. Wait, other kids loose their coats not just the deaf ones.......

We went through four coats until I finally invested in a very loud red, black and white coat. It became a signature piece for him and everyone knows it is his. If he looses it someone will always return it. The custodian told me to write his name in it even if he protests. The sixth graders always loose their coats I am told not just the deaf ones. Done. Things were starting to come together.

His school has a lot of art projects assigned. Without fail he would go to school with his work. I would text him throughout the day reminded him not to loose it. Sure enough by last period when it was due he had lost it. I am told by the staff he is very social and not focused on his studies between classes. I am also told most sixth graders are learning how to manage the rigorous demands of middle school not just the deaf ones. So to help him out I bought a bright blue portfolio and wrote his name on both sides. We gave him a caribeaner clip so it attaches to his backpack, problem solved.

So in many ways the areas we struggle with are not related to deafness. I was nervous about his crash course on the hearing world after being at the deaf school but none of my fears were realized in the way I imagined. Upon reflection I wish I hadn't been such a helicopter mom in the past. I am trying to improve with my hearing daughter but it is a hard habit to break.

There are real challenges for him because he is Deaf but they often frustrate me because they can easily be fixed.

Example

Interpreted live entertainment. Often we go to a play or event and even though there is an interpreter they may be standing in the dark, too far away from the action or only one is available for a play with a large cast.

Example

During the presidential campaign I wanted to share some videos online on Obama's site. No luck, no captioning. Lack of online captioning is a pain.

Example

Deaf role models in the media. Often we see deaf people portrayed as victims or not remotely like my son.

Example

Not being able to blend his world. He has a complete life in both the hearing and Deaf world but they rarely cross.

He has a lot of social activities with his hearing friends but when I ask him if he wants to invite his deaf friends he doesn't want to. It turns out it the two times he has tried it was awkward. His school friends are into different things he tells me. It feels forced. He can't relax.

I have heard many deaf people tell me the same thing that they don't feel they really completely fit in either world. This is true for my son. He is culturally deaf but when he started to mainstream at the arts school he had a whole new culture open up for him. It changed him and he blossomed with all of the opportunity. He still embraces being deaf but he doesn't spend as much time with his community. I am working on some plans to change this.

A good example is the play he was in. It was interpreted for two performances. I went to one with three of his teachers from the deaf school. Two are deaf. The problem was so odd. My son didn't need an interpreter so his regular qualified interpreters were doing it. A hearing person decided our seats and though it was perfect because we could see the whole stage from the back but we couldn't see the interpreters up front from our table so I interpreted it.

Example

Critical mass. There is a small population of kids who are Deaf in our town even though there is a deaf school. Class sizes are mixed age because of this and still really small. The kids don't have the luxury of picking friends based on mutual interests.

Example

Living under a microscope. We picked a path that is not really popular with hearing parents and because of that folks are always watching my son. I feel sometimes if he stumbles it will be blamed on our choice. He is also called upon to be a role model but other times told to hold back. In the past I have tried to hide him from this but found that people will come up with their own ideas about us. sometimes people judge us because we didn't implant him. Sometimes people judge him based on my actions in defense of our choices.

So...

That is one reason I blog. If he is going to be looked at because of his Deafness I want our side to be available.

So big picture these are some areas I would like to see improvement in. Sure there are others. What I like to keep in mind is my son is happy. I have friends with really big challenges with raising their hearing kids. It is just parenting plain and simple we all have bumps along the way. I just try and do my best to not be the person creating the bumps and sometimes I fail. Most of the time it is just a parenting goof and not because he is Deaf. The great thing is most people involved in his life are so fine with us. His deafness is just as important as the color of his hair. (which needs to be cut by the way)