Wednesday, December 2, 2009

This Warrior Mom Needs Some Red Wine, Stat!

We're less than 2 weeks from our IEP meeting with our county school system, and I am completely overwhelmed, stressed, nervous, and panicked. I've been so anxious and stressed that I find myself laying in bed at night trying to go over all the possible situations that we're going to encounter. I can't sleep, because my brain just won't turn off. I'm constantly trying to think of different avenues that we can take, different letters I can write, and different ways that we can spin Christian's test scores. I've spent more hours than I can count researching special education laws. I won't even get into how much time I've spent researching possible other placements for Christian for next year in the event that we can't go back to his current school.

We are in such a tricky spot. Because of Christian's test scores, he is pretty much placing out of the services that we know he needs. There is a very real possibility of us not returning to the River School (where is that bag of money that we've been looking for), andChristian may be attending a community based preschool next year. While it is our goal to put him in a mainstream environment, the reality is our little boy's hearing age is just 18 months old. Christian has been in an environment where he receives a listening check every morning at school (of course we do it at home as well) with teachers who have a special interest and focus in oral deaf education. He has access to a SLP the entire morning he is in school, providing him with both the pre-teaching and prompting that he needs. His classroom is acoustically fit for him, complete with a soundfield. The school has an in-house audiologist who IS A TRAINED COCHLEAR IMPLANT AUDIOLOGIST who can do mappings, troubleshoot problems, and do routine audiological checks. The program is language and literacy based--which is an essential component in Christian's educational success. Deaf children have an extremely hard time with literacy. Ask any parent of a D/HOH kiddo, and we can all quote the Marschark study that showed deaf high schoolers graduate with a reading level of 4th grade. THAT IS TERRIFYING.
*Note--Please see this interview with Marschark at Hands & Voices to get a bit more background*

I feel as if Christian is being penalized for all of his hard work and all of the intervention and resources that we have basically immersed him in since his diagnosis at 9 months old. I firmly believe that there is a major disconnect in our school system on how to properly educate and intervene with a Cochlear Implant child. Christian may be testing almost an entire 2 years above his age, but he STILL has a profound hearing loss. He STILL needs an intense amount of auditory training. He STILL needs the support of teachers who are familiar with the many nuances of a child with a Cochlear Implant. How can a child who has only been hearing for 18 months be ready to go into a typical preschool with limited to no support? Our parish preschool may have an absolutely wonderful program with caring teachers, but they have NEVER educated a child with a Cochlear Implant.

Our family goal has always been to have Christian in our neighborhood elementary school or parish elementary school by Kindergarten. We view his preschool years as THE MOST IMPORTANT YEARS OF HIS LIFE in regards to his hearing loss. The foundation that we build for him now will carry him through his academic career.

This is by far, the hardest struggle in our journey with Christian. My amazing little boy who speaks better and clearer than many of his typically hearing classmates is still deaf. He didn't just wake up one morning and start to talk. It's the result of intensive auditory training and intervention over the past 18 months since he's been implanted. My son is speaking the way he is because he has spent more time in therapy than on the playground. My son is speaking the way he is because we have sacrificed tremendously to send him to the best oral/deaf program that we could find. My son is speaking the way he is because he is bright and because he WANTS to. I have to find a way to keep him on the path that he is on. I have to find a way to continue to maximize this short window of language acquisition. I have to fight.


leah said...

Keep up the good fight- Christian needs the extra services now to give him that "running start" for when he enters the mainstream environment. Sending some electronic wine your way!

Connor's Mom said...

Best of luck at your IEP meeting!
I hope that everything goes well. In the meantime, some red wine sounds like a good idea! May I suggest some chocolate too? Chocolate solves all problems.