Oct 29, 2009

Skyler Update

I have been struggling with something decent to blog about, and didn't want to fall back on another silly video. Then I thought about an email conversation I had with Red, who is the significant other of the Evil Genius. She was asking about Skyler and what are we doing since he graduated from High School. So I thought that maybe others might be interested in the dudes adventures, so update ho!

Skylers summer was all fun all the time for him. He was very happy to be out of school and spent the days making his home DVDs, playing games on his computer, and generally bothering mom and dad just like a teen is supposed to be doing. He thought he was finished with school, but little did he know that a plot was being hatched for him in the fall.

When you are on an IEP (Individual Education Plan) you generally don't really graduate when you end your senior year. You are eligible for some more transition services until you turn 21. So for Skyler, this means that there were some programs to investigate that would help him with his transition into adulthood. What this usually means for kids with special needs, is a place to go hang out and learn life skills. How to budget, plan meals, cook, some simple things. Most services are geared for kids that have a developmental delay, not a physical one like Skyler. It is just the way it works out.

After graduation, we were approached by the school (this is very important, they came to us!) about including Skyler in a program called JTS for Jeffco Transition Service where they take some kids who show the apptitude and put them into a college setting. This would be at Red Rocks Community College, and he would go there, hang with other kids, take a class, and generally get to be part of a college atmosphere in a shortened day.

This sounded very good to us, but we are skeptical of the school system because our hitory has been one of us bending over the table asking for at least some lube. Sorry, that sounded a tad harsh, I meant to say we have not always been pleased with their choices.

So we asked before school was out for the summer to meet and discuss Skyler's needs. No problem they said, we have it all worked out. Generally we don't take kids with Skyler's physical needs, but we made an exception for him. (Spidey senses tingling here)...

So midway through the summer and then just before the new program starts, we reach out to them again, asking if they would like to meet to go over Skyler's needs. He uses a Dynavox, he needs medication, there are seizure precaution, and there is diaper changing. No problem, we are ready!

Then the program starts. It is Tuesday, Wednesday, and Thursday, 8 to 1:30. Tuesday and Thursday he has a class, Wednesday is a day off to go out into the community. First thing we hear is that they can't give him his medication and supplemental feeding through the G-Tube. The nurse hasn't cleared them on that. Can the give it to him orally? Sure, he can take the nasty tasting seizure meds by mouth if needed, but what part of supplemental feeding do you not understand? His gets fed through a G-Tube because he can't get enough calories by mouth!

So, we agree to have him get his meds by mouth, not do the extra feeding and we pick him up earlier so he doesn't go hungry. The extra feeding is taken off of his IEP/medical plan the very next day. Why is that important? Read on...

The next issue is that they don't have a good changing area for him because they don't feel comfortable with getting him out of his chair and lying him down. The two attendants both have back and wrist issues (what the fuck?) so can he stand and get changed? If he could stand, wouldn't life be just grand? That would mean he has control over his body, ergo no more CP!

So he doesn't get changed unless he goes to a different facility that has kids with greater needs than what they can provide. We say, OK, will he go to his class? Well, no, but the good news is that it's not too late to drop the course! That is their answer, drop the course and go someplace else because it is easier for them.

I could go on and on, but long story short (oops too late or that) is that we hire an advocate for our meetings, go see a lawyer who now gets copied on all letters to the school and now they are making a half-assed attempt at getting Skyler taken care of. Not enough to make me happy, and I want to find a different program for him to attend. But my wife wants to fight this out.

I have always been of the opinion that you can't litigate people into accepting and believing in your child, but we still can't let them get away with treating Skyler this way.

The reason I said that it was important that it took them under 24 hours to get things off of his IEP/medical plan? Well, we spent 3 weeks getting a couple of people able to give him a G-Tube feeding, and now they say that they feel more comfortable doing it, but it isn't on his medical plan! We are 4 weeks into trying to get that reinstated. Funny how long it takes to get something back in writing...

So that's the bad, next update I will talk about the good stuff - Skyler's job!!


  1. I'm sorry you're having to deal with this stuff.

    We dealt with school bureaucracy when Adam was in 4th grade-- he had a teacher who was completely incompetent and picked on kids. We documented five years of it, and it went all the way to the Superintendent of Chicago Schools (Arne Duncan, our current Sec. of Education). The principal who refused to deal with the situation rued the day we brought attention to her-- it turned out that she was stealing from the school-- hundreds of thousands of dollars-- and got caught because of the increased scrutiny.

    It didn't matter for us-- I had pursuaded (read "bribed") Adam's mother into moving to a better neighborhood with a better school.

    I'm eager to hear about Skyler's job!

  2. Thank god there's some good news - I can't wait to hear it especially if it's job related.

    I can't believe they have put you through all of this after approaching you in the first place. Crazy. And it sounds like such a great program, but you know what they say about good intentions and the road to hell I guess.

  3. I would say that it's unbelievable how incompetent these people are. But, actually it's very believable.

    Can't wait to hear the good news though!

  4. WTF? having a chronically ill child myself [asthmatic and hearing impaired] i understand your anger. it is UNBELIEVABLE how on one hand they want your bizness and give you hope while at the same time they dont want to have to work... bastards! and "it's all for the good of the child"

    yeah, right.

    i say fight it, and draw attention to it.


  5. I say fight the good fight. You may pave the way for the next special needs kid.

    I've got m fingers crossed for all of you. Hard to believe that they grow up so fast, eh?

  6. I worked with adults with disabilities before having kids. The problem is programs like that have to BEG for money. And because they function on a shoestring they offer low wages for the front line work. So you get people and facilities who can't handle tube feedings, changings, etc. It's all so screwed up. Our county agency managed but just barely.

    Why can't we just treat all people with dignity, regardless of their disability? We've got billions to spend on killing people in Iraq, but nothing to help kids like Skyler go to college.

  7. I'm with Candy. When you fight for Skyler, you fight for all those who will follow him too. My BFF has three boys with autism. She is right in saying these are just some of the stretches that qualify as Extreme Parenting, which is not for pussies!

  8. Fighting the good fight sounds good, but by the time our kids get to Skyler's age, we are warn out and sick and tired of fighting. This is but one example of what parents of kids with special needs deal with from the time our kids are born until...well, either we die or they do.

    It's a never ending battle and the cause is woven very deeply into our society. If people really cared, do you think we would be battling for health care reform right now? Dealing with health care issues is right up there with dealing with underfunded schools.

    Sorry for the vent, but I know Skyler's Dad gets it. He's been there and done that, as I have.

  9. GRRRRRRRR. Now that's just not right.

  10. gosh i will get caught up on blog reading one day just with verizon messing me over i am way way way behind.......well you know how it all goes.

    my problems are so small in compharison...but i do understand. they can take something away in a snap but drag forever to put it back where it belongs

    i pray for you and yours

  11. Ugh, the fucking schools. Why are they like that? Why can't they just be more willing to try and help someone out. Bastards!

  12. It sounds like you are having the same problems my parents had with my sister Jane, almost 20 years ago. The more things change, the more they stay the same.

  13. I couldn't believe how irresponsible the JTS people are when you told me at lunch the other day. Especially since you checked with them a couple of times. I know you're a lover, not a fighter, but I think Kathy is right to fight this... for the next kid that comes along that has special needs.