Friday, October 23, 2009

Christopher and my angst. Read at your own risk.

As I'm sure I have said before, Christopher has classic autism, although his is pretty mild.  He is very verbal, although he didn't talk at all until he was 2, and not in any meaningful way until closer to 3.  He got some speech therapy through EI at 2, aged out, and has been in the school system since the day he turned 3.  Half day special ed pre-school, 5 days a week.  Speech, OT.  He's currently in a mainstream kindergarten class with a para, receiving speech.  OT hasn't been set up yet, but is on the table. 

But we aren't sure what's going to happen.  He's losing ground, compared to where he was last year in the special ed preschool - he participated in all the activities there, circle time, centers, you know, the typical group things they expect of kids this age.  He's not doing any of that now.  Part of it is his para - she's not pushing him to participate.  With Christopher, if you don't push him, he's content to do nothing.  And the special ed coordinator seems to really want him to move back to the other school - out of this one.  When I said I wasn't sure this placement was working for him, the look of relief on her face was instantaneous, and obvious.

I'll be honest, I'm spoiled.  Every single teacher C has ever had has adored him.  So this was an odd feeling for me, to feel like he's not wanted here.  But it's making me think.  This is a typical classroom, with typical teachers, and typical kids.  They aren't used to dealing with kids with issues.  Maybe this isn't the right place for him.  It's obvious to me that as of yet, he's not getting what he needs from them.  He needs someone who's going to push him, challenge him, not baby him and coddle him.  He needs people who aren't afraid of the fact that he's autistic.

And is it really fair to the other kids in the class?  Making him participate is going to result in some tantrums at first.  Especially since he's been allowed to NOT participate for so long.  Which will be disruptive.  What about the other 21 kids in the class?  Is it fair to them to make them have to deal with that, just to keep him in a mainstream classroom?

We mainstreamed him for 2 reasons.  the first and biggest is because Christopher NEEDS peer modeling of social skills.  As an autistic, his biggest deficit is his social abilities.  Staying in a classroom with other, mostly more autistic children, he won't have that positive peer modeling.  He won't be able to watch and learn how typical kids interact.

The other reason was because his last teacher really thought it was the best place for him.  Both for the above reason, and academically.  Which brings me to another point.  He's developmentally behind there too.  I mean, according to his teacher, it's not insurmountable, it's not like he's "a 2 year old in a class of 5 year olds" like I thought he was.  But I feel so defeated when they send home the weekly homework, and he can't do it.  This week, it's rhymes.  And for the life of me, I can't seem to figure out how to get him to make the connection what a rhyme is.  And he hates being read to.  Do you know how much of kindergarten involves reading?  I mean, really! 

I'm at a loss here.  I don't know what to do.  Going back to the other school (which is a special ed specific school) is something I am more than willing to consider if it's the right thing for him.  I just don't know what the right thing is.  I know children don't come with a manual, but dammit, I wish he did.  It seems all the decisions I make for Christopher are bigger, and harder and more important than for Lexie or Joshua.  I know, they're not - at least not more important, but it sure feels that way. 

In part at least because he can't tell me if I'm doing it right.  I worry about where he's going to end up in life.  More than anything.  You know how when you're pregnant, and they're tiny you try to envision their lives?  Well I have one real hope for C.  I want him to find someone who loves him for him.  Someone to share his life with - we aren't meant to go through life alone.  But for that to happen, he's going to have to reach the point where he wants someone in his life.  And I don't know if I see that happening.  Which is part of why we want him around other kids.  We want him to learn to make friends.

When Lexie (who is a social butterfly) has the neighborhood come pounding through the house, as they so often do, Christopher often doesn't even notice they're there...  Well, actually, I'm sure he notices.  He pays attention to everything and is constantly surprising us with the things he knows.  But it makes no impact on him that the house is full of noisy rambunctious kids.  He has no desire to be a part of it.  And that's okay.  But I'd like for him to have a friend eventually.  Or to want to have one.

Anyway... back to the school issue.  After a long talk with his teacher and the special ed coordinator last night, we've decided to try it for another month.  But we're going to crack down on him.  No more letting him get away with not being involved.  I know he's capable of so much more than he's been giving them, and I want him to reach his full potential.  I even told them I am more than willing to come to school with him and sit with him every day to make him do it.  There's nothing I won't do for him.  For any of my kids.  I just wish I knew that this was the right thing. 

8 comments:

erica mac said...

I can't offer any wisdom, as I don't know what you are going through. I think ultimately, you've tried to make Christopher feel like a normal child going to school. That is what counts. I also understand your anger and sympathize with you.

The 'Ssippi Scoup said...

Wow! You have thought this out more than any parent I've ever dealt with face to face. I am a sped teacher with training in autism. I don't know how your schools are set up in the state that you live in, but schools that are specifically for disabled kids is against the federal law of IDEA. It is your parental right of a child with a disability to request that he stay at his home school, which is the reg. school he is now. Maybe you need to ask for training for the para so she understands autism better. Are they using any type of communication system with him like picture symbols or the if/then system. Like, he is told if you do A, then you will get to B. A is usually something the teacher wants him to do that he might not really want to do, but B is something that he loves and might is sort of like a reward for do A. If he can't function in the regular classroom for the whole school day, could he not go in the K class during times that he could socialize and go to the sped class at that same school during other times? Oh, and while you are requesting training for the para go ahead and request training for the reg ed teacher as well. It's also the federal law that he has access to teachers support staff who are knowledgable of his disability. Autism is a very hard thing, and I know you know that. But you are so right when you say being in a classroom with peers with Autism isn't providing positive role modeling. Many times, school systems and sped coordinators don't want to make reg ed work for our kiddos because it cost major money to do so. BUT, they cannot use that as their reasoning for not providing for him. He probably needs a visual schedule for his day so that he knows what to expect when and nothing is a surprise to him. If your not familiar with I'm talking about google "picture exchange communication symbols" and "picture schedules for children with autism". Also, keep in mind that more than likely his pre-k teachers were sped teachers and familiar with autism and sped kids. Regular ed teachers have no clue. Believe me, I deal with them day in and day out and they just don't get it. Feel free to contact me if you want more info or have questions. There is a great parent support board on the net at www.autism-pdd.net Hope some of this helps and keep us updated.

Really Frugal said...

What hard choices you face. As someone who worked in public schools for years, at times with autistic children included in reg. ed classrooms, I must say I hope you will not weigh too heavily in your decision the impact on other children. The para needs to moderate management to minimize that impact, but in general reg. ed. kids benefit from the lessons in empathy and acceptance that come from inclusion. I hope you are able to gather the best information you can, make the best choice with the available information, and go ahead with the confidence that you are doing the best you can. And with all respect to Scoup, some regular ed. teachers do have a clue. Or two. Best wishes for a good resolution for you and your little guy soon.

Dawn said...

My 5 year old grandson is autistic as well. The developmental pediatrician said he would not be surprised if they diagnose him with Asperger's when he's older. They don't diagnose Asperger's in children under the age of 7.

My daughter is dealing with a lot of the same issues as you are. Gavin is in a regular kindergarten class. However, this school has a communication classroom specifically designed for those kids with autism and similar issues.

Gavin loves that teacher and classroom and he is going to start going there for a few hours a day. We really believe it will help him get through his sensory issues so he can do better back in the regular class.

My daughter is always looking for people dealing with the same issues. Let me know and I can pass on her email address. Maybe since you are both having similar issues, you can bounce ideas off of each other and see what works.

Jennifer said...

Thank you so much for your support, all of you. I really needed it.

EM - You know, I don't know that C has a whole lot of concept of normal yet, one way or the other. But I will fight for him to have whatever he needs to do the best he can in life.

Scoup - I responded to you on your blog 'cause it was LONG! :)

RF - I just don't want C's issues to be a hindrance to the other kids. I need to talk to the teacher and find out what the rest of the class has been told - if it has been explained to them, I'll feel better, as opposed to them just thinking (and telling their parents) that C is just a "bad kid". And I do think his teacher cares - she doesn't seem to want him out of the class room, it's the sped coordinator who was the one I got that impression from.

Dawn - C's teacher last year thought they'd change his diagnosis to Asperger's when he gets older as well, but I don't know. Either way doesn't matter to me. The main reason we sought the label at all is it makes services easier to obtain. The school system itself doesn't use them until age 8. I wish they had a class like the autism one spoke of at our school - if only because they'd be more familiar with it there!

I'd love for you to pass my information on to your daughter. It would be nice to have someone to talk to who's going through it as well.

Once again - thank you all for being so supportive when I needed it most!

won said...

Jennifer,

Your son has a right to be right where he is now for a multitude of reasons, one of which is that is where you wanted him to be - with valid reason. For the school to simply "give him an extra month" is a total cop out.

If he is losing ground, as you mention...you need to call another IEP and tweak the goals. Him losing ground, assuming it is documented somewhere (if not, please get it so), provides verifiable assurances that the current plan is not working and thus means the district must try something different within his mainstreamed classroom. They simply and legally can not just "get rid of the problem". They HAVE to teach him, or at least exhaust EVERY option where he is before talking other placements.

Having a bunch of knowledge and experience with such things, I suggest to you that the new IEP goals be very, very concrete (i.e and per your observation that he needs peer modeling of social skills - draw upon that. One goal could be that Christopher would initiate conversation or acknowledge on other student daily. Circle time? The goal could look like this: C will participate 20 minutes daily. Measurement of that goal? That every third day, he increase time spent in circle by 2 minutes.). Homework?? He's in kindergarten. Allow him the opportunity to be successful by putting in the IEP that his assignments should be cut down into thirds for homework, with him only being responsible for one third. All other kids reading a book a night? He gets three nights. Five questions on a paper? He does two. It is so important for him to feel supported at this early stage, not to set the stage for dread and doom.

Point is, specificity is necessary. It can not simply say "C will be more social".

School has 30 school days after your written request to reconvene the IEP.

I have knowledge and resources. Let me know if you'd every like my help. This is one of my hot buttons.

won said...

One other thing. Start doing all your communications in writing and keeping copies.

Everything.

Paperwork is your new best friend.

The 'Ssippi Scoup said...

Oh yes, WON brings very good points I left out. I read over at OHIH but usually never comment. I have you bookmarked from there I guess. Didn't mean to offend Frugral, but if you have a clue as a reg ed teacher, you are above the norm in my area. Some reg ed teachers Do get it and obviously you are one of those. No harm intended.

Thank you for the sweet comments about my daughter. She is a blessing.

My email is wareaglegirl30@gmail.com. Feel free to contact me anytime and I'll specifically share some resources and goals that I've written with the help of autism consultants from all over the southeast.

Otherwise, you just remember, the schools isn't advocating for your son. YOU ARE!!! And it is a battle. www.wrightslaw.com has some good resources but even I have a hard time narrowing down specific topics there. Your best bet is that other link i gave you and to post questions. Those mamams and advocates are bulldogs.

Good luck and feel free to contact me again, anytime. Thanks for reading my blog too!

 

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