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!!
