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Saturday, December 02, 2006

Having a deaf child...behind the scenes.

Each child brings challenges and adventures to their parents' lives. Usually, as a parent, you can relate with other parents about your baby's sleepless nights, your son's procrastination when it comes to his chores, or even frustrations with the local school. I have discovered that this is not so with a deaf child. Other parents can not relate to you and what you struggle with. Unless you have a deaf child, you would not know what it is like, of course. I don't know what it is like for other parents who have a child with special needs, but when you are a parent of a deaf child, you are sometimes in a lonely place.

I can honestly say that I do not wish that Chance was not deaf, and that I do not see his deafness as a burden. Having a deaf child puts you on a huge learning curve and you are constantly encountering new territory. You work to find the best method of hearing for your child, then you seek out the best learning environment. You spend a lot of time explaining to people that deaf children can indeed hear and telling them that your child is capable. Just when you resolve one issue, another issue arises. For instance, I have been trying to be involved with Chance's school. It is two cities away and makes for about a 45 minute round trip. Twice now, however, I have been completely left out of the loop. At the begining of the year, the school had their big fundraiser and I bid on something at the auction. Before leaving to come home, I verified that I had not won anything, I was assured that I had not. After I got home, I got a call telling me that I had won something and could I come and pick it up. I told them that I did not live close by and could I get it another day. I have left 4 messages and have not received a reply.

Then they had an art contest at the school, and Chance turned in a drawing. After Chance forgot to turn his project in, I took it to the office. I never heard anything about it again. Then in the school newsletter, I learned that the contest is over, and we missed the displays and I have no idea where the art project is now. No one at the school even knows who we are except for Chance's teacher. When we do receive notices from the school, often the event has already occurred. It is hard to feel a part of something when you do not live in the area and have contact with the other people involved. Chance has friends at the school, but he can not play with them at any time other than school. I have thought that I should find out who the parents are of some of the kids in his class so that I can meet them and maybe have a play date. Chance has friends in the neighborhood, but he misses out on a lot here too. The other kids walk to and from school together, are in neighborhood carpools and can play together at recess. Chance gets home half and hour later than the neighborhood kids and needs a snack and a breather. By the time he goes out to play, the other kids are involved with games etc. Chance just tries to join in and the other kids are usually good to let him be a part of things, but Chance is always playing catch up.

When Chance does integrate to the neighborhood school, the kids that he has been attending school with through the School for the Deaf, will be dispersed to their neighborhood schools. So Chance will have lots of changes and will have to adapt to many new things. We are very grateful for the School for the Deaf and are glad to have Chance integrating in a regular school. It is just a lonely place to be sometimes when nobody around you is going along on the journey. And not only are they not on the same journey, they cannot comprehend the worries and struggles you encounter (and often they make no attempt to, or it doesn't even occur to them that they should). That being said, we have fabulous neighbors, without whom we have no idea how would have survived to this point, and fantastic teachers who genuinely care, and who help Chance and us a great deal.

Many people who have older children have told me things like, "Just wait until your kids are older and your life gets really busy! You'll be driving all over to football games, and piano lessons...it is just out of control!" It is surprising how many times comments such as this have been said to me. (I have pledged to myself that when my children are older, I am not going to go around telling moms with young kids how easy their lives are) These kinds of comments just solidify the feeling that you are alone. I am not driving to football games etc., but I bet I could hold my own if my schedule was compared to anyone with older children. I am driving to speech therapy, to help in Chance's classroom, to the audiologist to program the implants, to doctors appointments, two surgeries in the past year and various other meetings that come up related to Chance's deafness. Not to mention all of the normal doctor and dentist appiontments and the like. And I have other children that have their own appointments. I do not feel burdoned or put out by the extra appointments. I would quite frankly do anything to help Chance and as his mother, it is my job to do so. I like to be involved, and I find this journey a fascinating one. But I do feel quite alone sometimes as the journey I am on can not be understood by many other people. That is to be expected. But people also just don't realize what effort goes into helping these kids hear. I cannot imagine people telling a parent with a blind child, "wait until your kids get older and you have a lot to do!" And frankly, you get to choose to enroll in football, piano lessons, and other extracurricular activities. When you have a child with lots of doctors appointments, there is no choice. You do what needs to be done. But you are reminded every so often, that you walk alone on a path that those around you do not understand.

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