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

Posts tagged ‘autism’

This just made my day a little

So I am still engaged in an epic battle of wills with my son’s school over what “transition” is supposed to be, and what his education is supposed to be accomplishing at this point. We’re at a bit of a stalemate, because I’ve called for reinforcements and they’re desperately trying to get me sign something before those reinforcements take over. A bit shady, but that’s how the game is played. No one wants to get caught being non-compliant with IDEA.
It’s mentally exhausting. It shouldn’t be, I am not new to the autism spectrum after all, my son is 18. But it’s wearing me down anyway. I guess I thought by this point it would be easier, and I would know where we were headed. But nothing is ever that simple, is it?
Anyway, today I found this piece, and it was uplifting:
I know what causes Autism

A glimpse behind the scenes of our life on the spectrum

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!

As my son would say: f* off

http://www.washingtonpost.com/news/parenting/wp/2014/10/29/holding-my-son-with-autism-accountable/

So this has been making the rounds of my Facebook page today. And I am a bit irked by it, but I’m not sure I’m irked by the article or by the people who are posting it. One of the them doesn’t have kids, she just works with developmentally disabled adults, which is totally not the same thing. The other two have autistic kids, but are also besties with my son’s teacher who I really have an issue with.  So I kind of question if they’re really thinking the article has something good to say, or if they just want to stick it to parents who they don’t agree with. One of them is the my son’s former middle school teacher, (and I would say my former friend, because I haven’t spent time with her in almost a year) and she tends to think a lot of  parents let their kids “get away” with too much stuff.  I have real issues with people telling me, or anyone else, how to parent. You don’t live in my house, you don’t live with what I live with every day, so don’t think you know how to do what I do and certainly don’t think you can do it better.

It’s not that I believe my son with autism SHOULDN’T be held accountable for his actions, of course he should. But who gets to define that accountability? I don’t limit my son’s screen time normally, that’s not a battle I’m going to have, but I do set parental controls on what he’s allowed to watch and I only allow certain video games into the house. I don’t much care if he swears randomly, but I don’t like to be called names or told to F* off. If he chooses to get angry and break something of his I figure going without whatever it was he broke is consequence enough so I don’t do anything further.

My issue with his teacher is that she puts him in situations where she knows he is going to fail.  She’s a die-hard ABA believer (Applied Behavior Analysis for those who don’t speak autism) and one of the tenets of that is to provoke a behavior over and over again so you can correct it. I think that is complete B.S. and I also don’t think that research backs up ABA (I can prove that if you want, but not right this second), but people who believe in it are like hard-core evangelicals or Tea Party radicals, you can’t convince them of anything else. So she continuously puts my son in situations that make him unhappy. He already doesn’t like gym class, and then she put the one kid he has never gotten along with in the gym class with him, so guess where a lot of his behaviors happen?  His first year at the high school he had a job doing laundry, which he liked, but when this teacher came she wanted everyone to do the same job (its part of the vocational element of the program I guess) because its easier for her to supervise so they cleaned the cafeteria after lunch. Alex does NOT like this, so we had behavior issues there last year until I pitched a fit at our IEP meeting, but he’s back there again this year, and still having behavior issues there. I called the job “demeaning” in our meeting last year, and the principal got mad at me, but I didn’t mean that custodial work was demeaning in general, I meant being forced to do it when you don’t want to because that’s all people think you’re capable of is demeaning. I still think that, and if that is the only kind of job skill he’s going to be taught, then I question what we’re doing there anymore.

The article says:  “Now is the time to give him every tool he needs to be calm, happy and productive as he grows into an adult.” and I do agree with that completely, but I don’t know that he is getting the right tools at school and I don’t know that he ever will. I do know that if your kid is practically non-verbal, or has no manners, or if you don’t have kids, then maybe you are not who I want to hear about accountability from.