May 1, 2009

Finally free of the school system

This is Skyler's last couple of weeks in his senior year. While other parents are looking back at years gone by with their kids accomplishments and looking forward to their future achievements, there are other households where this occasion marks some different feelings.

Ours is such a household.

Our journey through the school system with a son that has Spastic Quad Cerebral Palsy and significant sensory issues has not been what could be called smooth. Even before Kindergarten, we already felt the system trying to steer us away from his home classroom and into a contained program. It doesn't matter that the law says least restrictive environment, or that was what we wanted. What mattered was they could keep all of "those kids" in a separate classroom, and usually even in a separate school.

But we fought the system, tried to make everyone see the little boy who tried hard to make himself understood while he battled his stiffness and lack of control. Some teachers "got it", most did not. We finally had a change in school administration in Skyler's 4th grade, and got a principle who supported inclusion. Now, it was a mandate that Skyler be accepted, and still some fought against us. But things were better overall now that we had him on our side.

I remember one event as if it happened yesterday. While working with an aide in the classroom, she would show Skyler cards with sentences that had a missing word on them. Sometimes the would give us the lesson in advance so we couldprogram into his communications device the proper language, other times they would not. On this occasion, he had a page with all of the language for that day. The sentence that he was asked to complete was "I sit in a ____" and he had the word chair on his talker. But he kept leaving that page and looking elsewhere. the aide kept grabbing his hand and taking him back to the language page, and he didn't cooperate, so she got mad and said he won't stay on task.

When I picked him up that day, they told me that he wasn't staying on task, couldn't read, didn't belong in class... Blah blah blah, the whole thing. I asked for what they were doing and they explained that he was leaving his page when asked to fill in that blank. After looking at the sentence, I asked Skyler to show them what he was looking for. He immediately left that page and went and found his environment page, and said "wheelchair".

He knew better than them that he doesn't sit in a chair, and then he just looked at them in contempt.

You go dude!

Year after year through school this continued, all the way up to his Junior year. Now he is with his typical peers about 1/2 the time, other times he spends in the wonderfully named "challenge room". He really likes making videos and working on recording things, but they say that the schedule won't accommodate him leaving the challenge room to take the video editing class. Besides, "it's probably above him"... So what is their solution for a kid who can't hardly control his arms?


We said "have you spent any time watching our son at all? Do you not see that he isn't going to be turning pottery anytime soon?

This year, his last in school, he finally got to take video editing. He got an A.

I won't miss this battle one little bit.


  1. Good for you guys! My parents had to fight to get me into the same public school that my 6 siblings attended.

    I can remember my grade school principal saying, "They told me if you fall, you're out". Well, I did fall sometimes but no one told 'the powers that be' (school board). Being on crutches had nothing to do with my academic skills.

  2. Good for you!! The school system can suck at times.
    Oh and a big Congrats to Skyler for getting the A!!


  3. GO SKYLER!!!!


  4. Congratulations to Skyler. And to his wonderful parents.

  5. Ceramics. You just can't make this shit up.

    Congrats to all of you for making it! I loved my video editing classes, too, it's such a blast.

  6. I love that kid. Wheelchair, indeed.

    Congrats, Skyler! You showed them all, didn't you? Very proud.

  7. This post really hit a nerve for me. It is so frustrating when teachers and administrators dismiss your kid and your insight into your kid's abilities. Kudos to you for fighting the good fight.

    Schools try so hard to make it "one size fits all." Kid has a disability? Stick him in a separate classroom so the mainstream classroom teacher can focus on the "regular" kids, and then don't bother to provide instruction at an appropriate level and/or in appropriate areas (they really thought he could do ceramics but not video editing, when he uses a computer to communicate?!? What complete morons!!!). Kid gifted? They'll be fine with "regular" work -- no need to provide instruction at an appropriate level. Kid gifted in math but needs extra help with reading? Just give him the usual curriculum and let him be bored with the math and unable to follow the reading.... it is such a frustration, for everyone except the parents of the one kid in 1,000 who is truly "average" in every area.

    Sometimes you get lucky with a good teacher who "gets it" and challenges your kid in the way he/she needs to be challenged, and supports him /her in the way he/she needs support, and things are a little easier for a year. Sometimes you get teachers or administrators who think you are exaggerating your kid's abilities and downplaying his/her difficulties, and the fight is that much harder. Thank goodness (and kudos to you!) that Skyler made it through with his confidence intact. His persistence shows that he is not going to let the idiots walk all over him.

    I wish you and Skyler all the best in this new, post-graduation phase of life!!

  8. This post made me very sad - almost to the point of tears.

    I'm glad you are within shouting distance of the end of the school system. I only have one more child with one more year and I just take a deep breath and go forward.

  9. I LOVE Skyler!

    There is an old saying that goes, "A wise man picks his battles".

    You and Skyler are a couple of old sages, yes sirree!

  10. Anonymous1:06 PM

    Congratulations to Skyler.

  11. Good for you guys!

    And congratulations to Skyler for graduating (in a few weeks) :)

  12. Perfect - now I'll have someone to edit videos for me.

  13. Good for Skyler and good for you and your wife. I remember you mentioning the story with the chair.

    The public school system is f*cked up in ways I can't even begin to tell you, from my end, as a someone who walked away from it after working 15 years from it. Thank god you got an administrator who was supportive. School administrators, with a few exceptions, are timid idiots, who seek solely to cover their asses, when not peddling their pet education theory.

    My second year as a teacher, when I was not yet certified, and worked as a sub, I was put in a "self-contained" classroom for kids with severe learning disabilities. It was pretty amazing-- I was not even certified as a teacher, let alone to work with kids with learning disabilities. The experience was as much a learning experience for me as for them. I began to realize that mixed in with kids with actual learning disabilities were kids who were steered there because they were discipline problems. I also began to realize that a lot of the teachers who were "certified" as LD teachers, with PhD's and all, got them at phony baloney diploma mills, and added the certification on to move up in pay scale. They had no idea what they were doing. I'll have a post soon about one particular experience with an "LD" teacher.

    Of the hundreds and hundreds of students I had, my very favorite one was from that class. His name was Eduardo. His parents were immigrants from Ecuador and spoke almost no English. Eduardo, who had severe dyslexia, helped them function, translating for them, etc. He was a joy to have in the classroom-- he was a talented artist, and was just a nice, nice kid.

    A couple of years ago, I found him on He finished high school and went to Colombia College, an arts school here in Chicago. He got a degree in filmmaking, and works in the industry.

  14. I know you've had to struggle in ways that parents of many other kids haven't, but go you for doing it. Skyler has one helluva dad.

  15. Congratulations, Skyler. You're my hero. And congrats to you too, Chris.

    Now I know where to go to have my video manifesto cleaned up before I release it to the media.

  16. We should all be so lucky as to have someone like you on our side.

    Go you! What a great Dad you are!

  17. I know it's been a long, tough battle, but kudos to you and Kathy for hanging in there. Big props to Skyler - I know he has broadened more than just one teacher's view on what it means to be handicapped, and Skyler has touched many people's lives while going to school there. You must be very proud of that.

  18. I hear you Chris, this gets exhausting year after year and with every grade it's like starting over again. But sadly the problem goes much deeper. So many kids regardless of their abilities are not reaching their potentials and this will not change until we make education a priority. There is no better investment in the future for all of us. But so many just don't get it.:-(