Born - again TEACCH

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This is a rant.
My son crashed a year ago, and we had good help getting him "back".
He also started on ritalin and anti-epileptic medicine - I believe many of his rages were actually seizures.
The TEACCH teachers were wonderful, and we couldn't have done without them.

But now my son is doing great. We want to cut down on the expert help and get back to having a quasi-normal life (he goes to a school for kids on the spectrum).

The teachers are saying him getting better is 100% their work.
I find it really insulting.
Not once have they said we've done a great job. Nor mentioned the medicine, which undoubtably has helped.
Not once have they agknowledged that we stuck by our son when all professionals were saying he couldn't live with us - too dangerous - he had to be institutionalised.

I'm worried that they have an ecconomic interest in stigmatizing my son, so he seems so bad he needs their help. They say he is doing great, they were worried if they weren't there, our loving but less professional approach would mean that he within a week would be melting down!! !
I think it is problematic that they are the one's evaluating him, but also earning a lot of money.

We do our very best with TEACCH and pictograms, but of course we are a family and he is with the other kids.
They seem to think his best interest is to ONLY be in a super-structured enviroment were everything is planned to meet his every need - something impossible in a family of 5.
I know we make a huge effort, and I know we do/have to do more than the other parents of kids in his class.
I refuse to believe that 200% TEACCH is the only way to go.
I'm sure my son in the long run will profit from be in a more normal family enviroment and having to get on and cooperate with his brothers.

In the mean time the TEACCH people have started teaching/supervising at my son's school, and it's all becoming a bit too much!

I feel like we have lost control of the situation, and that it isn't our call any more - it is very frightening!

As the parent, legally your the one who should be in control. If you feel the teachers are taking to much control, talk with them. Tell them that you want to start mainstreaming you son. Go about chaning his IEP to reflect this. If this winds up being to much for him, then you can back it down a notch and take it slower.

And any teachers that say a students progress is soley their doing are dead wrong. Parents/family has the biggest impact on children. I've seen student go from being at the bottem of the class and seeming hopeless, to being top of the class just because things at home changed for the better.

BTW this is coming from a idealistic college student majoring in special ed, so take it as you like.

It's all very complicated - we don't want to mainstream him, but we do want him back at his Aspie school on the same conditions as the other AS children. I honestly think he is functioning just as well if not better than the other kids. (I'm not being unrealistic!)

And we want the school system and ect. to see him as a "normal" kid with HFA.

Mainly, I guess I'm hurt because my enormous effort has been made into zero - maybe this is ego. But I have always been well-informed and made a big effort to help my son.

The other question I have is:
Is strict TEACCH 24 hours a day best for my child? I.e an enviroment created to suit him? With very controlled, structured social activities, no surprises ect.

In principle we're supposed to schedule
what the activity is (we can manage this)
with whom
and for how long.

The two last bits can be a real hassle after school, with 2 brothers who may or may not want to participate in an activity, and may or may not bring friends home.
It sounds easy, but it's hard!

Katrine,

I hope you don't mind, I got very angry when I read your post. How dare these people take %100 credit for how well your son is doing! I'm sure if your son wasn't doing so great they would offer you some credit for THAT!

I can't comment on TEACCH because I don't know what it is.

I know your a great parent. I love to read your posts, they are always full of great advice.

I think its fantastic that you have stuck to your guns and kept this child safe with you and your family, you've not taken the easy option and for that you should be commended. IMO the best place for your son is with his family, the first place where he will learn to live in this crazy/scary/social world is with his family.

I live next door to a group home, whilst the staff do their best for the clients. It is at the end of the day a group home and they are just clients. You mentioned that these people think it would be more structured and consistent for your son to be in an institution, I know the guys that live in the group home next to me can fly into rages when there is a staff change over. Some staff are better than others, this is not consistent.

Again my hat goes off to you, your doing a wonderful job.

I don't understand when you say you want a normal family. Is he living with you or not? I don't get this at all. You should be able to have him evaluated by someone from the district who is looking at his best interests (Least Restrictive Environment).
Have you referred to the meds and home input to the teachers? or are just taking their comments personally? Teachers have often insinuated that we are not doing the right things at home but they are speaking out of ignorance. Unless you have brought up the subject directly and specifically, you really don't know if they are denying your involvement.

No, the 24 hour schedule doesn't sound easy and doesn't sound realistic. We are very structured here but there has to be some flexibility. What if someone has to stay longer at work, go to the hospital, run to the store?

I don't even think THEY could offer what your asking Katrine.
Either in a group home or a school, no one could really say who else would participate in each activity. Some days all kids would participate other days some/or one child in the group might be having a bad day. IMO they would be setting him up for a melt down.

You can only give it your best effort, life is full of surprises teaching your son the skills involved in overcoming some of these surprises would be much better I think.

Don't let these people make you feel like you don't have your son's best interests at heart. We know you do.

aurea: thank you, thank you, it was just what I needed to hear! Almost made me cry .

Kim J: I know it's confusing! He has always lived with us, but for a period we had teachers in the house, and they later went to school with him, first for an hour, then longer and longer.
When he was really bad, we were advised to turn our home into a kind of institution - literally. When the teachers weren't here, one of us "had the job" of one-on-one. We even ate dinner seperately.
Now he is better, we don't want to, and can't manage, "segregating" him from the rest of the family and planning his day so minutely.
The question is can he function in a "home enviroment"? I think he can - sure, there are sometimes arguements and he does silly stuff. But when I look at other families, there AS but also NT kids can create just as much chaos.
I don't think he will "crash" cause we don't do it like the TEACCH people specify....

All of this came about because we asked one of the teachers whether she would look after him one weekend a month. She said yes, but then her boss, who also is one of the teachers, said it wasn't possible because he needed an "institution like" arrangement. He would be happy to provide this, but she would then be working through the company, at a much higher tarif. He also mentioned that it was no good if his employees stopped being able to work for him because of this kind of situation. All of this came about in a very indirect fashion, so part of the problem has been communication.
It was this "bid" for the job that made me feel out of control with the situation.

To complicate matters more, these teachers have started working at my son's school. They were reluctant to let go and let my son do the whole school day like the rest of the class, although I actually think he is managing really, really well. He's thriving!

About evaluations: oficially you are right, but the school evaluates, and now these teachers are a big part of the school, as they actually are very competent and are supervising/teaching the other teachers how to use TEACCH.
In this country, all funding is public, so he if he makes an offer, his evaluation of my son goes "on the records".

You are probably right I am taking this too personally, but it's hard not too!

Okay, I get the institution part now. Yeah, it sounds like asking them to babysit was an oversight.

Well, if you want to change schools and they are denying that, then you could appeal and say that he doesn't have access to the LRE. That's his right by law. If he can be fully included and doesn't need to be segregated than he has that right. No kid is meltdown free forever.

Frankly, this is why I have kept trademarked therapies out of our household. It's too much like religion. I just take what I want from a variety of sources and especially read the stories of older autistics and see what worked for them. (Dr. Temple Grandin)

Yep - it's got that religious feel to it! It's freaking me out at the moment. Like trying to get out of a sect .

Sorry - but what's an oversight? (my English!)

The laws here in Denmark may be different - we can't freely choose a school for my son. Believe me! I've lost a couple of battles.... and I fought long and hard!

An oversight is like a mistake. Asking one of these people to watch your son brought more unwanted attention to your situation. Unintended consequences.

saying that I believe children progress well with a team, especially with loving parents, I'm sure that an entity that is focused largely on monetary compensation can't be a credible resource when they comment on your parenting skills.

It's been my experience that you have to look at yourself as a peer and often a teacher when dealing with other people in regards to your child. You really do have instinctual insight as a parent that can't be borrowed or bought.