Monday, January 29, 2007

Forwarned is not always Forarmed

Dr. M. did the I.Q. test and initial assessment of Therin to see if he would qualify for VMRC to do an official PhD Psychiatrist assessment/diagnosis when he was in Kindergarten. He spent about 1.5 hours with Therin and when he was done Dr. M told me that if the Psychiatrist saw Therin on a good day his autism might go undiagnosed. So 4 months later durning the 2 hour drive to San Jose for the appointment to get an official diagnosis I was trying to analyze all of the triggers that Therin might encounter. We did what we would normally do for any drive with Therin. We made him comfortable, brought toys, games, snacks, and music to keep him occupied. He had both parents on the trip so that if Therin needed a break and we had to take a walk one of us could be talking to Dr. J. We didn't do anything to "aggrivate" or push his buttons so that his autism would be obvious. I wanted a diagnosis but what I wanted more than anything was somebody else to see what I saw. I wanted Dr. M to be wrong. I figured that Therin would get a diagnosis of PDD-NOS or Aspergers and then he'd get help at school. Yet, when we got there Therin was in his element. Three adults paying attention to him. He was extremely compliant and time constraints didn't bug him at all. Therin was on his best behavior and I hadn't seen him act so well, ever! I figured we were going home without a diagnosis and I'd have to find a way to pay for a second opinion. To my surprise Dr. J gave him the diagnosis "High Functioning Autism" He meets 10 of the 12 criteria for an autism diagnosis. Many of the difficulties on the list are very mild. A few are moderate and 1 or 2 cause him great difficulty. Most times he does well handling his minor sensory issues but if it's a bad day you can tell because noise or shoe problems will be triggers for tantrums.

I was warned at the beginning by Dr. M that an Autism Specialist may miss Therin's autism diffuclties why is does it continue to surprise me EVERY IEP that the people observing Therin miss his problems when they don't have a background in autism. The school psycholigist likes to point out to me "that we ALL observed him and we ALL came to the same conclusion. How could ALL of us be wrong." "If he's on task 85% of the time what do you really thing an aide would do to help him?" He's "on task" for the 1/2 hour that they are observing him and when they leave he melts down or becomes defiant. Doesn't that say something? They probably think that Mrs. L is lying. Who knows. Just because his difficulties aren't always apparant doesn't mean that they are addressing the issues he needs help with. Just because (compared to other children on the autism spectrum) his issues are less intense doesn't mean his teacher doesn't need an extra person to help her when his issues do become more intense. There are 2 other children on the autism spectrum in Therin's class. I would be happy with a whole class aide but there isn't a classification in our school district for this kind of thing.

If you haven't figured it out already this IEP was pretty much just to tell me that Therin isn't severe enough to qualify for an individual aide. It only took 2 weeks of observation for them to come to this conclusion. Whatever. I told them what I thought and I wrote on the IEP that I still feel strongly that Therin needs an aide. There is someone who will spend more time in the classroom with him to help get his behavior plan together. We will see how this works. I'm tired. I don't want to fight them anymore. So for right now I'll wait and see and save my energy for future fights.


MileMasterSarah said...

I’m sorry your IEP went so badly. At Sandis’s schools I know sometimes kids will share a para-educator. I think you should become the letter master. Talk to Therin’s teacher a couple of times a week and send any concerns you have about specific things you both discuss that happened during the week to Therin’s caseworker at school, and then CC every member on the IEP board with a copy. I bet you could easily send them at least one letter a week. After a few weeks of this you could request another IEP meeting armed with further concerns based on what is happening day in and day out in the classroom. They can’t ignore it when it is in writing! I hope that whatever you do you find peace with it and Therin gets what he needs. Take care and I’m rootin for ya!

Sandra Miller said...

I'm sorry your IEP team is making this so hard for you and your boy.

One of my nieces is deaf-- and though she now has two cochlear implants, she misses a lot at school without the help of an aide.

I still remember the struggle it took for my sister to get her the help she needed in the classroom.

Good luck with this.

And hang in there,


(p.s., a very belated thanks for both the link here and your kind comments on my Flickr photos... I'll add a link to your blog this evening :-)

Amberthyme said...

It's very disheartening to get a definative "no" and I really felt defeated on Monday but a couple of teachers I know suggested that I get an advocate.

One thing that I did ask for is a para-educator (not in those words) that would be for whoever needs help, not just Therin, but they don't have anything like that in our school district. In fact the Principal really liked the idea as well. I don't understand why they don't have that available it makes sense to me that more than one child could share and it would alleviate some of the IEP teams fears that Therin would glom onto the adult helper and avoid interaction with the kids.

MileMasterSarah said...

A good para-educator will not let a child glue themselves to them and not interact with the children. A good para-educator will be a helper not just to the child, but to the children around the child, helping with social situations, academics and also assisting with various other things including OT. I don’t think that their concern that Therin would “glom” onto the adult helper and avoid interaction with other kids is valid. First of all, from what you have said here, Therin already avoids interaction with other kids. How is having an adult helper going to change that? A good para-educator would be able to help Therin initiate play and interaction with the other children, and that should be something that is in the goals of what that person would do!

I really think that an advocate is a good idea. If you really want this, then an advocate would be able to help lead you to where you need to be to get it. You can call PACER and ARC as both organizations will help provide free advocates. I have an advocate that will go with me to Sandis’s IEP meetings, and he is Sandis’s County Mental Health Social Worker. You can always call your county Human Services and request a social worker for Therin to aide in getting Therin appropriate services at school. Sandis’s social worker told me that most children that request aid from a social worker have problems in at least two of three areas (Home, Community, School) but they can help even if there is only problems in one area. Good luck and I hope you get everything Therin needs, not just what the school wants to give him!

MileMasterSarah said...

We've been thinking about you guys! I hope everything is going okay!

Amberthyme said...

Everything is fine. I've just been a little bummed out & burned out, so I took a break.

I've been wanting to blog but everytime I touch the computer the kids pull me away! It's been really cute. I've been lurking during my time away.