Alexander and Lily

Alexander and Lily

Tuesday, September 27, 2011

So Much to Update...

So the last time I wrote we were heading to the Moog Center for Deaf Education in St. Louis for a parent workshop. I was worried that I wouldn't learn anything new and that it would be an expensive trip for nothing. So not true! I learned a lot (the most important being we always need to raise the bar and expect a little more language from our children) and the experience helped me decide on a preschool placement for Lily. Before visiting Moog I was convinced she was ready for mainstream preschool. They explained that, even though she has relatively good receptive and expressive language for her age, she probably would not continue to gain new vocabulary at the rate of her hearing peers in a typical preschool program. It is best that she is able to understand and speak complex sentences of 8-10 words before entering mainstream school. The problem with mainstream schools is that they don't teach children how to talk. Hearing children will learn most of their new vocabulary incidentally (just by hearing adults use it in conversation), but our hearing impaired kids won't learn nearly as much in the same way. They need direct, intensive language instruction to make the same gains.

Sooo, after visiting the two auditory oral programs in Columbus and Ohio Valley Voices (Moog curriculum school) in Cincinnati, I was convinced that Ohio Valley Voices in Cincinnati would give Lily the best chance at closing the language gap between her and her hearing peers so that she will be ready to enter mainstream kindergarten with little to no special education services. We hope that by the time she starts kindergarten, the only big obstacle she will have is learning to listen with all the background noise. At Ohio Valley Voices she gets 2.5 hours per day of direct, intensive speech/language and auditory therapy and 2.5 hours per day of academics. During therapy she learns new vocabulary, new grammatical structures, works on articulation and performs audition tasks to increase her auditory memory. She will begin this program in November when she turns 3. She is currently enrolled in the toddler program there, where she gets 1.5 hours per day in therapy.

Alexander is receiving 1 hour per week of therapy. That is another reason we chose to go to Cinci. At Children's Hospital in Columbus, we were told that Alexander was not far enough behind in his language development to receive therapy. Those who know me know that wasn't going to fly with me. I believe, with all my heart, that early intervention is soooo important. So I found a program that agrees with me. I often worry that Alexander will "slip through the cracks" since his hearing loss isn't profound. Another thing I learned from Moog in St. Louis, is that hearing aids don't "fix" hearing impairment like glasses "fix" vision impairment. I previously assumed that they did. As someone who wears glasses, I know that my glasses allow me to see perfectly. Not the case with Alexander and his hearing aids. The aids amplify sounds that he cannot hear without them, but the sound isn't clear and he may still miss some sounds completely. He will never hear like me and neither will Lily. So he needs early intervention also. At OVV, they can both receive therapy in one place. The on-site audiologist also sees both kids regularly for programming, ear molds, MAPping, repairs, etc. So we get everything in one place.

After deciding where I thought Lily should attend school, I spent the rest of the summer and first part of fall preparing for the IEP meeting. I knew I might meet resistance since I would be asking for our local school district to agree to send her to OVV in Cincinnati. To any of you going through the process or about to, buy the book "From Emotions to Advocacy" by Pam and Pete Wright. The book isn't specific to children with hearing loss, but it is about navigating the IEP process for your child with a disability. It teaches you to organize your child's file (audiograms, speech evaluations, etc.), document everything in writing (it even has several sample letters for different situations), know the law, know your rights, and advocate for your child. After writing a zillion letters, researching programs again and again, having a meeting to determine eligibility for special education services, we finally had the IEP meeting yesterday. After a lengthy 2.5 hours of writing and re-writing goals and objectives, determining services and the amount of time and frequency she should receive services, we were finally to the big question. WHERE will Lily receive these services so that she will have access to an appropriate education as a child with a profound bilateral hearing loss? Everyone's feathers got a bit ruffled, but we determined that Ohio Valley Voices is the appropriate placement for Lily for this year. So we do have school district support, which I am soooo happy about.

Here's to a great start to the school year! Remember my family as my mom travels with the kids to Cincinnati several times a week. I pray for safety and peace of mind (as Lily can sometimes be hard to get along with in the car). :)