I'm a mentally ill person raising another mentally ill person. With chickens.

So I’ve not been as active here as I’d hoped in this new year, but I realized today that I have been writing a lot, just not here. And I thought rather than explain I would just share the series of emails with you and give you a glimpse into our never-dull world.

From my son’s teacher:

Attached is an updated CAP. It outlines the plan that Dr. Hedges, Mrs. Kaul and I discussed. Please feel free to review it and let me know your thoughts. 
For the most part, Alex is able to exhibit appropriate behaviors when in a 1:1 setting. However, he has had to start again today to work toward 5 days without exhibiting inappropriate behaviors. He flipped Mrs. Braun off because she said she didn’t have time to go to the library to find him another Marvel book until tomorrow. He currently has one in the classroom, but wanted a different one. 
If you have any input regarding the CAP changes, let me know. I would be happy to schedule a meeting to discuss them.  I also discussed with Mrs. Kaul your thoughts on an online curriculum. She and I agree that removing Alex from school would be considered the most restrictive environment, and probably not something that would be appropriate. It would require a team meeting, and the team would need to agree to the placement. Again, let me know and I can schedule the meeting to discuss it.

Thanks

.

CAP stands for Comprehensive Autism Plan, I guess. My son’s looks like the schedule of a convict in solitary confinement. So initially this was my first response to the teacher.

I fail to see how this is any less restrictive than being at home, as he sees no one but staff all day. And, as he is 18 he doesn’t HAVE to be there. This plan does not make me think that the district has anything to offer him, and I think that we need to be working with adult services. 

And then I stewed for awhile and sent this to the SPED director:

Hey! 

I finally opened my email from Nicole and looked at Alex’s CAP plan. I probably shouldn’t have before I went to bed. But I’m not very comfortable with it, it’s essentially in-school suspension all day, every day. Yes, there’s opportunities to work his way out of it, but they’re so gradual that I don’t believe he will even realize that the system is in place. I doubt he remembers on a day to day basis that he IS working toward anything more than a short term reward like computer time or a library book. I’m sorry, but I just don’t believe this setting is appropriate for him, I’m afraid nothing at the high school is. 

You know, we don’t see the kind of behaviors at home that they see at school. He doesn’t hit us, not even Audrey, and she picks on him a lot. He swears occasionally, but not anymore than other teens I know, quite a bit less than some. And his first year at the HS didn’t have near as many behavior issues either, even with all the subs, and with being in some actual classes. I just don’t think this classroom with this teacher will ever be a good fit. Her mostly ABA trained style will never be a good approach for Alex and I think it’s time to move to Adult Services. I was really just being a smart ass when I said that to Nicole about an online curriculum. I know there isn’t one for SPED, and I don’t believe that she could, even if she had time, create one. But I do think Alex deserves better than locked in a room all day. He actually likes people, and IS social when given the opportunity, and this isolation seems rather mean. At least if he were here he’d have some company. Megan doesn’t come back til next month, so I don’t have anyone on this end who can really speak for him except me right now, but I think something has to change. 

Thanks for your help!

Julie

I do try to be politer her to her, things go a bit better when she likes you. But I was still upset. So later I sent this to both of them:

Well now that I can’t sleep and have thought about it some more, I realiaze this plan very closely resembles solitary confinement at a 
correctional facility: He’s down at the end of a secluded hallway, he only sees the “guards”, has scheduled and supervised bathroom and meal breaks, and if he’s good he earns 10 minutes in the “yard” (yeah, it’s the computer, but it’s the same principle). No. Just no. I don’t know what to do yet, but this will not work, it is definitely not OK. I’m keeping him home the rest of the week while I see what my options are.

So this morning I received two emails from the SPED director who is out of town. First this one:

Your right, this is a restrictive plan. However, it is only temporary until Alex can show he is not aggressive to others. His behavior has improved on this type of
of plan. We don’t want him to be isolsted but we also have to keep others safe. I think Alex’s team needs to meet right away. I am back on Friday could we get together? Nicole could you see what Dr. Hedges has available? Thanks

.

To which I sent a rather lengthy response, sorry.

You’re probably right, but I’m terribly under-represented at this point. With Megan gone there’s only me to speak for Alex and I’m afraid that just isn’t enough. I don’t have family support walking me through every step of transition planning like everyone else has had, so I really do need to figure out some things before we get together. And I think I need help.  But I KNOW this is wrong. I know him better than anyone, and he won’t really comprehend a system like this, it’s too long term. He doesn’t use short term/working memory like a typical person. Everything either goes straight to long term or is gone. A plan this drawn out, with incremental steps, is not going to even register with him, he won’t really realize what his goal is supposed to be. Earning computer time, or whatever other reward they use, is going to seem mostly random to him and not getting it is going to be frustrating and cause more behaviors. (You can check the working memory section of his IQ test, it’s the worst section by far.)  
I really believe the environment is a large part of the behavior problem that you are seeing, because we are not seeing it here. We’ve actually seen an improvement in behavior and attitude since we added to his medication, he’s much more cooperative and polite here. Before when there’ve been behaviors at school we’ve had worse behaviors at home, but not this time, which points to environment. He does not fit into that classroom very well. I worried that would happen when he first went to the High School, and I was right. So I don’t know where he fits, or what to do, but this CAP is not ok. 
Sorry to be so difficult, I’ve really tried to play along even though I know he’s not really learning anything, but this plan just seems cruel. Yes, he’s offended people with his language, and hit Jeremy, and Mrs. Olson. But almost every time he’s had one of those behaviors it’s been in a situation I’ve suggested we avoid. I asked for him NOT to be in the room with Jeremy as much as possible, so they’re in the same PE class? I asked several times for a job besides cleaning the cafeteria, because he doesn’t like it and it always leads to behavior problems because he’s with Jeremy again, and in a place he’d rather not be. What else can I do? I’ve offered suggestions, Megan has offered suggestions, they’re disregarded and then there are behaviors. I don’t foresee a change, and  I can’t in good conscience accept this plan, so I feel very stuck. I will see what I can find out about transition planning from other sources this week and then talk about a meeting. For now, I’m keeping Alex home. I do not feel right sending him there under those conditions, I just can’t do that to him. I hope you understand. 
Thanks!

Julie 

She sent me another request for a meeting later that morning and here’s my response: 

I don’t want to meet with Nicole. I don’t want to be in the same room with her. I have tried the “let’s get together and make a plan” approach in the past. Megan and I went in to parent teacher conferences last year with a list of suggesstions for what works with Alex, and things to avoid (like Jeremy) and she said oh sure, we can make that work, and then basically did everything exactly the opposite of what we discussed. Our current situation did not have to happen, she was given a lot of tips on how avoid these behaviors. She just didn’t want to avoid them, she wanted to CORRECT them. And now here we are. ABA is not a philosophy I believe in, and it’s not actually all that supported by research either, so why it is being used in a classroom is something for you to figure out. 
I stayed on board last year because she promised that voc rehab and adult services would be at our IEP meeting last winter to talk about transition;  instead it was just another CAP plan meeting showing me how they’re following the plan. I have a Master’s degree, I can read the damn plan.
What I can’t do, because I have ZERO information, is make any kind of transition out of High school plan for Alex by myself. So, I made an appointment with rehab services for him next Tuesday, and I applied for Family Support 360, and I asked Advocacy to look over his CAP plan. (I don’t like involving them, it feels adversarial, and in theory we should all be on Alex’s team.) 

 I am done sitting down in a room with Nicole so she can say one thing to look good to you and then turn around and do whatever she pleases. I’m sorry if that is disrespectful, but our experience at the high school has just gotten worse each year, and I am frustrated and angry and quite frankly, done. I appreciate that you have listened to me, and tried to help, and really been very pleasant! But, I do not see a way for Alex to go back to that room and acheive any kind of success. 

Thanks! 

Julie

So that’s where I left it. I know I probably sound kind of winy, or demanding. But the whole goal of school from 18 to 21 is supposed to be job and life skills, and I fail to see how he’s gettng those isolated in a room with one staff member all day.

So I HAVE been writing, just not anything fun. Hopefully that will change soon!

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Comments on: "A glimpse behind the scenes of our life on the spectrum" (1)

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