Sunday, August 29, 2010

Taking a Leap of Faith

Life has a funny way of changing one's perspective.  I have been, and always will be, one of public schools' greatest defenders.  I am so proud to be a public school teacher, and even though I can only sub now, the days I teach are always my best days.  I love what I do.

But I am getting ready to hang up my hat permanently, so that I can dedicate my energy to the task of educating my son on my own.  Yes, I am going homeschool.  No one is as surprised at this change in attitude as I, but it has been a decision that has brewed for a long time, and both Robert and I believe that Gabriel's education is best served in our own hands.  Nick and Elijah will continue to be public school students, as they have been served well and are thriving.  Gabriel is a different story.  I believe the public school is doing its best.  I love his teacher, I know she adores him and she works very hard with him.  But the results aren't there, and it has become more and more apparent to me that the public school system, as a whole, has a lot of changing to do in terms of how it views kids with special needs, especially kids with Down Syndrome.

I used to argue that Special Ed teachers were better suited to teach our kids than mainstream teachers - a view that didn't make me a particularly popular in the DS community.  I still think that is true in terms of kids with special needs in general, but over the last couple of years, I've come to see that Down Syndrome is unique among special needs, and Special Ed teachers have been trained to teach a broad array of needs, without much in the way of specifics for each need.  Kids like Gabe need specific teaching strategies and respond well to a way of teaching that is antithetical to the way we, as teachers, know how to teach, particularly when it comes to reading.  This last year really made that point clear to me.

Last summer, I attended the National Down Syndrome Congress Conference, and I attended every workshop on teaching they had.  I heard from the world's BEST teachers on how our kids learn and the best strategies for reading, for number awareness and math.  I came of home from that energized and excited.  I went through my materials, I put together my own program from pieces of others based on what I had learned and decided I would "extra-school." Gabe.  As life can be messy and chaotic, I was not as disciplined as I should have been and my time working with him was inconsistent at best.  Some weeks we didn't work on anything at all.  In April, we met for his annual IEP and one thing jumped out at Robert and I.  When reviewing his skills and accomplishments for the year, and looking at the list of sight words he could read, two-thirds of those were what he learned from me working with him at home inconsistently.  If I was able to get better results with an inconsistent effort, than he got at school, something was wrong.

There were other concerns, as well.  He has nearly a dozen doctors he sees.  He gets sick more easily that others.  His attendance, consequently, can be less than ideal.  In particular, his sleep challenges really hinder him in a setting that requires alertness early in the morning.  He is often tired, and waking him up is usually a challenge because he doesn't sleep well at night.  Tired boy = uncooperative boy, more often than not.  

All these things we have been mulling over, and we were leaning toward a compromise of perhaps half day at school, and half day home school.  Then, this week, I was forced to stop everything by my eustachian tubes.  They are shut tight, the fluid build up in my ear has rendered me barely able to hear and constantly dizzy and nauseated, leaving me capable of nothing more than sitting still and thinking about things.  Ironically enough, this week Gabe had to see the audiologist, where it was discovered that one of his ear tubes had come out and the other was clogged and he, once again, was hearing through a filter of fluid.  This has been a constant problem for him for as long as we can remember.  Up until this week, I thought that the fluid build up merely dulled his hearing, and that speaking directly to him in a slighty raised voiced would properly compensate.  Now I know better. Fluid doesn't just dull the sound.  It distorts it.  Severely in some cases.  What starts as words entering my ear ends as a series of indescribable screeches and . . . well, distortions that have the same effect as nails on a chalkboard.  Meanwhile, in my less affected ear, I can hear voices, but the interference from the other ear makes it challenging.  If there are more than two kids talking, I cannot distinguish words.  If we watch a movie, I can only understand the dialogue when there is no loud background music, and if there is an action scene, forget it.  This was Gabe's first week of school, and he had a terrible week.  Well, no wonder.  With all the ambient sounds of a classroom, the music and the voices of other kids and aides, I'm sure he can't make out half of what is being said and his frustration is expressed through his behavior.  I have been short-tempered and easily irritated because of the sounds coming in my ear.  I can't imagine how frustrating it is for Gabe to be in the same situation, and not be able to express what he hears or why he is frustrated in the first place.

If we bring him home, allow him to sleep and get up when he is ready, work with him one-on-one with no other sounds or distractions, I think we will see much greater progress. When I work with Gabe, I see such amazing potential.  Yes, there will always be limits to what he can do, but those limits are moving, and I don't think the educational system has caught up.  I've come to believe that, as a whole, the educational system has not yet fully divorced itself from the era that viewed kids like Gabe as uneducable.  They are making progress, but I think there is still an entrenched view that their education should be centered around self help and life-skills.  It's going to take another generation - Gabe's generation - to grow and prove to people what they can do.  I am going to help make that happen.

This isn't a path we ever thought we'd choose, but it seems every day there is one more reason we should.  I am scared to death, but I'm more scared of letting him be pushed through a system and then wondering if I have let him down, and limited his future.  So, we are getting our ducks in a row.  We're calling for another IEP, and hoepfully, by the end of the month, will have him learning at home.  I have designed my lessons, set up a schedule. We are standing at the the edge of the diving board, staring into the deep water, praying that when we jump, we can swim.  It's a huge leap of faith for us. In the end, I pray it's a leap worth taking.