Monday, April 23, 2012

Spring Boy


This is Ethan’s favorite time of year. He has never said so, but I can see how much he delights in being outside, exploring the yard, the blooms, and the trees. He has been signing to me a lot about the squirrels and birds and has picked up a habit of mine: running full speed at the squirrels that would steal the bird’s food from the feeders. His new and (vastly) improved hearing has been fun to witness in all settings, but particularly outside. It’s fun listening to all the bird songs while helping him locate them in the trees. He tunes out the neighborhood noise (mostly mowers) and picks up on the more subtle sounds of nature with a natural ease; I don’t have to teach him or take him to sounds I want him to notice.

We had an IEP (individualized education plan) meeting last week with his entire team: classroom teacher, special education teacher, SLP, OT, adaptive gym teacher, deaf education teacher, and administrative representatives. His interpreter was the only person not present at the table. They’ve prepared a group of goals for him across the board academically and socially that really couldn’t be better. He has an amazing special education teacher (has had her for 2 years and will leave her for a new teacher next year) who has the perfect combination of intellect, skill, flexibility, and compassion. The only time I have cried in the past several weeks is when I think about how much she has done for him and how I wish she could follow him through the years ahead. She sets the bar high for him, but helps him reach it carefully without asking too much too soon. And apparently, she sets it equally high for herself because she just can’t be replaced. The new teacher will have enormous shoes to fill.

I recently visited a deaf-autism program at a deaf school in Vermont. They have one of the only programs of this kind in the country, so I was naturally very interested. It appears to be in its infancy (2 years old) and is very underdeveloped from what I could tell. The enrollment at the school is incredibly low (50 students) and only a few in the deaf-autism program, all of them older kids. If Ethan were a student, he’d be in a regular classroom and they would have autism services delivered via a consultant role in the classroom. I met the staff and observed the classroom and felt that they were incredibly friendly and engaged in their work. The teacher did not yet have a special education degree, but was a deaf educator instead. I couldn’t quite see Ethan in that class based on what appeared to be a less structured environment; he thrives on extreme structure. Right now he is skill building like a maniac and I think we’d be very hard pressed to find a setting that meets the academic standard as well as combined services that he is receiving.

What I loved was the focus on job share training for the older kids and their strong connections within the community. It seemed like a place where Ethan could age and be more of a part of the community. Community involvement is something we’re thinking about as we shape our plans to support Ethan’s growth. We are transplants in a sprawling area that lacks a center of gravity or a sense of community. We have high standards in this area as we come from a small town, which fosters that atmosphere more so than anywhere I’ve seen. For now, we’ll stay put since the school district is doing such an incredible job and we are near Ethan’s team of doctors and therapists at the hospital. Looking down the road, I know we’ll enter a different phase and need to make a shift. The school in Vermont (as well as the community) presents the strongest option yet.

I also want to note that in my opinion, Ohio is not a friendly place for people (or their families) with autism. Insurance companies aren’t mandated to cover services and additional support is only available if you’re low income. I hope things change for the families in our state who are trying to make their way in this world, but I know for sure that Ethan will not grow into adulthood in a place that isn’t willing to care for him. 


Kyla said...

We had KayTar's annual ARD last week...this reminds me that I need to write about it!

I really hope next year's teacher will be equally great with Ethan. We've gotten lucky with KayTar's teachers so far, but I get nervous with every switch!

dlefler said...

I am glad Ethan's current school is great, but I do wish Ohio had a better policy for people with Autism! The spring pictures are gorgeous - I love the one of Ethan in the flowers!

We have Nolan's CSE transition coming up - he scores highly in the academic realm but has a few physical issues we need to address, along with the need for a TOD for vocabulary, etc.