Friday, January 11, 2008

HIPPA-potomous

Yesterday was the day the school social worker was to present to Jaysen's class about Autism. When we discussed this presentation at the meeting on Wednesday, it was to be an informal, nondiscriminatory way to introduce Autism Awareness and sensitivity training to his classmates (while he is still on suspension), talk about his strengths, and talk about ways the kids can support him in the areas he needs support.

The problem? There were several parents in attendance.

Yes, I think it is a good idea that parents are informed and aware as well as the kids, however, parent attendance was never discussed with me. If I had known parents were going to be there, I would have been there to answer any questions from a parent-to-parent perspective. It was my impression that this was going to be a "safe" place to talk about what it means to be Autistic, where the kids would be able to ask questions and receive clarifications regarding their concerns. I was furious.

Here was my e-mail to the principal and the director of special education upon finding out:

I am aware that the Autism awareness discussion with Jaysen's class was held yesterday, I would love to know how it went. At our meeting, we discussed the purpose of this presentation was to provide Jaysen's classmates with sensitivity training and education about how Autism affects Jaysen, to foster more positive social relationships, and to reassure them that things are under control.

It has come to my attention that parents were also in attendance. I do not know who authorized this decision, who invited the parents, how they were notified, or why I was not invited as well. If the intent was to have parents present, it should have been discussed, and I should have been notified. Had I been notified, I would have been there to represent Jaysen, and answer any questions parent to parent.

I want you to be aware that this is a breach of Jaysen's confidentiality under FERPA law. I gave permission to discuss Jaysen's Autism with his classmates and teachers. I did not give permission to hold an open forum about my son. I expect this issue to be dealt with accordingly.
The principal responded that I was correct, several parents did attend the discussion, although she didn't know they were going to be there. She said they were neither notified nor invited, and she didn't know how they knew there was going to be a conversation at all. She apologized, and said they should have asked the parents to leave the room while the discussion took place. She assured me this type of situation will not happen again.

Is it just me, or is this not enough? Are you planning on finding out how the parents were "invited"? Isn't it obvious to you that his ignorant teacher was the one who tipped the parents off to the freakshow as they dropped their kids off that morning? If you weren't expecting the parents, why didn't you clear the room? This is absolute bullshit. I am so glad he wasn't in school.

My advocate says not to get my panties in a bunch. I should look at it for what it is. Parents are now informed too, and now...the district "owes me one". She suggested not to file a formal complaint, and now is the time to ask for the big stuff. I took her advice and wrote a letter to the director of special ed, and asked for his teacher to receive immediate training, and a Functional Behavior Assessment (that they still haven't completed) with the assistance of ISD. ISD is the Intermediary School District, and they are supposed to know their shit. They're who you call when your district isn't cutting it. It's also difficult to get their involvement because honestly, they have more important things to do than other people's jobs. On Monday, I am going to write a letter requesting Extended School Year (ESY) services, and an IEE at their expense.

Still, that only makes me feel a tiny bit better. This is so wrong. The advocate is right, that I have to play nice because Jaysen's only in 1st grade, and has a lot of years left at this school. I'm just sick of all of this. At what point does it become discrimination? At what point does it become too much? At what point do people consider that there is a real child with feelings here? My friend suggested I confront the teacher about it, but I'm too afraid they'll end up calling the police because they found out just what a combative mom really is.

In a bit of humor, the other autism-mom at Jaysen's school, left something for me in Jaysen's backpack. It's a note on a heart-shaped piece of paper that says "I've been thinking about you, I hope you're doing okay. I remember mentioning this book to you. I think you will enjoy it. I couldn't put it down. I'm here for you."
And it was stuck inside...a copy of Jenny McCarthy's book.


She apparently doesn't read my blog.

15 comments:

Casdok said...

Ive never gone along with playing nice!! And have surprising found a lot of the staff at my sons school respect me for actually speaking up, and things have improved in the school.
My mouth hit the floor at your last paragrah! Followed by a laugh! You just have to laugh sometimes dont you!

Ashley's Mom said...

I have never played nice - not from the moment my daughter entered school at age 2 1/2. Nice doesn't win battles. It is going to be a long, hard road - one that will exhaust you and have you wondering if you are doing the right thing. You are - stick to it - visualize your son's future. That will keep you going.

Instead of reading Jenny McCarthy's book (what is wrong with that mom?), I suggest reading The Art of War - a much more valuable resource (and I am not kidding).

Marla said...

The last paragraph is a "classic". Wow! That sounds like something someone would give to me and then expect me to talk to them about it after I read it. A friend did this once to me with a homeopathy book. Okay. I read it...so what? I do not think homeopathy will cure my daughter's seizures. Ugh!

Anyway, with the school I would let it go. Just my thoughts. Maybe the parents there enjoyed it and learned something. I guess I would see it as a good thing if parents were there. They need to learn too. Am I missing something?

I don't think it would violate HIPPA since it is at the school. Parents should have the right to attend anything their children attend at school.??

I hope the school situations calm down soon. I am looking into part time schooling for M but when I read some school related posts on blogs I remember how nice it is not to deal with schools.

mommy~dearest said...

Marla- It actually is a HIPPA violation.

The reason I'm upset isn't necessarily the fact that they breached his confidentiality, but the fact that it wasn't supposed to be for the parents. We could have done a meeting with the parents another time, but this was supposed to be for his classmates.

It was an opportunity for his classmates to receive information and ask questions- on their level. We all know that kids act differently when there are adults present- some kids may have felt they couldn't ask questions they really wanted to, or they shouldn't ask. They may have felt it better to let the adults lead the conversation and ask the questions. I don't know- I wasn't there, and I would have been.

I would love to homeschool, but the reality is I can't afford it, and I really don't think Jaysen would respond to me as his teacher too. I think that would be really confusing to him!

misha_k said...

I'm sorry you and Jaysen are going through this. It's not right. I'm finding I can't play nice when it comes to my daughter's education. She has a 504 Accomodation and it's not being followed. Nothing I've done has helped so I now have to call in the efforts of an advocacy group. From everything I've been told this group doesn't do nice at all in regards to the schools but they will get whatever the child needs done. I have a feeling I'm going to have to do the same thing next year when my son enters the same school. I've heard little to none about the autism program there.

misha_k said...

Forgot to add that last paragraph made me laugh and choke at the same time. It's almost an assumption from autism parents all we all think alike. I personally would have returned the book with a simple no thank you.

Again, I hope you can get this all straightened out. The school just keeps putting it's foot in its mouth. Jaysen deserves better and I hope the school can finally get their act together and give him the services he needs.

Val said...

Eep to the book.

Double eep to the situation.

Reminds me of the time in 7th grade where they stuck me in remedial English and social studies (my two best subjects) and advanced math and science (my two worst subjects).

My mom intervened finally (after I told her what was going on. I was one of those aspie kids who didn't say what was going on at school ever). And after much fussing, got me switched to the advanced english and history class, but I had to stay in advanced math and science. There are all kinds of issues that resulted from that, but I'm not going to go into that since this is your blog and we should be talking about you!!!

Marla said...

mommy dearest-It really is a violation? Sorry, I did not know. I can see where it would be upsetting. Hopefully you will be notified in the future.

I did not meant to infer that you should consider homeschooling. I know that is not an option or answer for everyone. Most days I am not even sure it is the answer for us! I never dreamed of homeschooling, believe me. Please don't think I am saying that is the answer. I do understand how difficult dealing with the school is and know it is a full time job. I did not mean for my comment to come across crass. I apologize.

mommy~dearest said...

Marla! I did not take any offense at all! I was absolutely serious when I said I wanted to homeschool Jaysen, I've done a little looking into it in the past, and I just don't think Jaysen would be a good candidate due to his strong attachment to me. I too, apologize for not making myself clear. :)

Elissa - Managing Autism said...

Apparently she doesn't read your blog!!! LOL

I would have been furious too if parents were present and I didn't have the opportunity to be there as well.

What is this teacher's problem???
I'd be tempted to face her head on and have it out with her - can she not see what problems she is causing, and can the school not see that perhaps the teacher is part of the problem?!?

I really feel for you - surely things have to improve from here!!

Sabrina said...

I really don't know but can understand why you're upset. Ugh! Big Hugs to you!

A Bishops wife said...

I put up with this kind of stuff with Noddy, when he went into 4th grade--Junior was in kindergarten. The things you write are so simalar to what I put up with and struggled with. The times I cried...I just feel your frustration. Not that it matters, but I am praying for you guys....for sure after I read the last paragraph! :)

dgibbs said...

I feel like I live in lala land at the moment as the only problem I have had with Connor's school is that the teacher didn't understand why he was popping kids on the top of the head after seeing other children playing duck duck goose. We are only in preschool though.

I had considered homeschooling as well but my teenagers prove to me all the time that they are smarter than I am. FYI- the more children you have the lower your IQ. I have 3 leaving me with the mental compacity of a teaspoon. :D

As for the book, I am sure the mother meant well. I've read it and the comment the mother made about not being able to put it down may have been because it was a very simple and short read that even I was able to finish in a evening. An amount of time I can never get back I might add ;-)

Marla said...

mommy deares- Phew. Thank you. Can't wait till you post again. I hope school is going okay.

mommy~dearest said...

FERPA.

*Derp*