Friday, October 9, 2009

Sometimes a Rose is Just a Rose

At the end of the summer, at a meeting with district CSE chairs to discuss my sons' re-introduction to the public school system after our two years of homeschooling, it was suggested that I convene immediately with James' school team to explain his unusual health issues, due to his Hyper IgE diagnosis. To this end, I sent in a formal meeting-request to his classroom teacher on James' second day of school.

Early the following week, the meeting took place. At the time, my husband asked if I needed him there. I assured him that I did not, that this meeting would not be worth taking a half-day off from work.

So. I show up. Introductions are made. I go through James' timeline of illnesses, including his most recent bout of pneumonia (with concurrent pneumatoceles) last spring. Then I explain the components of Hyper IgE: skin, lungs, staph aureas, asperigillus, antibiotics, blood tests, teeth, bones. I also explain how James fell off a scooter at a friend's house last spring, refused to get up because he claimed to be in pain, and was taken by ambulance for a full body scan at the local hospital, where he was found completely healthy. I emphasize repeatedly, as I recount this, that James is beginning to become aware of his health differences and that this is causing him some anxiety.

When I explain that a predisposition to long bone breakage is a component in 65% of the 200-plus people world-wide diagnosed with Hyper IgE, and that this has implications for my son's safety/vulnerability in school, the school nurse loudly slaps a series of forms on the table in front of me and emphatically states:
Your son will not be able to take part in recess or gym until these are filled out.

I look down. The forms are checklists of activities, with boxes indicating to what degree they are allowed.
Skipping? Vigorous skipping? Jumping? Jumping from 1 foot? Jumping from 3 feet? Jumping on 1 foot? Jumping on 2 feet? Jumping rope? Running jumps? Skipping jumps? Often? Sporadically? Never?
My first thought is: WOW! no one has ever asked me to fill one of THESE out before! I wish I'd known these existed. I would have been able to do SO MUCH LESS explaining!

This thought was followed quickly by: How long have they had a form like this? Why haven't I ever seen one before?

And finally: No gym or recess until the forms are filled out? So my son will be segregated from his peers during all opportunities for recreation until the forms are filled out? He attended school here for YEARS going to gym and recess. What is the difference now?

I give voice to this last thought. I am immediately told:
You know: there is *nothing* in your son's file to indicate that this is necessary.
I am thunderstruck. My son's unusual health concerns are such an integral part of my life, my thought processes, my parenting experience. It hadn't ever occurred to me that I would be disbelieved. Had apparently been disbelieved.

I turn to the the school nurse. I remind her that while James was attending this school in kindergarten, first, and second grade, she had applied suntan lotion to him every day prior to recess...because he was photosensitive...because he was taking bactrum...because he had an AUTOIMMUNE DISORDER.

I am told, again:
There is nothing in your son's file saying that he has an autoimmune disorder. Your son had a prescription from his pediatrician for sunscreen, that was all.
And I realize. This all suddenly makes sense. Why I always received such an odd reception from all of my sons' teachers, why my older son's fourth grade teacher had once shouted at me:
I have heard all about you. Don't think I haven't! And don't think I am not writing down everything you do or say!
And, when my son with a diagnosed predisposition to long-bone breakage was being hit, kicked and bullied by another child and repeatedly sent to the nurse's office, why the principal would not return my concerned phone calls...

She'd thought I was crazy. They had all believed that I was making up this whole autoimmune disorder thing.

And at every IEP meeting, and every parent-teacher conference I had ever attended, everything I had said had essentially gone unheard. I had not been part of an IEP "team" for my child, I had been a voice to be put up with. All of the time that I had spent learning about my son's health and neurological needs had actually worked against me. My intimate knowledge of my sons' health had confirmed this school's suspicions of Munchausen's by Proxy.
But it gets better. Because once MBP seemed a viable option, then all of my actions, everything I said, seemed to confirm it...
So. After the official team meeting, everyone but the school psychologist and James' classroom teacher get up and leave. The teacher then opens a folder and takes out a class assignment: a picture that James drew as a birthday card for a friend. Each child had been asked to create a birthday card for another child in the class on the first day of school.

I take the sheet of paper. On the front is a very good likeness of Boba Fett. Who is shooting a child (with a shirt that says "James") who is yelling "nooooooooooo." On the inside of the card are the words
Happy Birthday, bub. Enjoy your cake.
There is no question, the card seems in poor taste--does not...immediately evoke a festive ambiance. I'm not quite sure what my son was trying to communicate. My hand flies to my mouth and I whisper, "Oh, GOD!"

This is when the school psychologist explains to me that she is seriously concerned about James' mental health. That "depression can take on different guises in children than in adults."

"My son is not depressed!" I state. Just like someone in denial. "Whatever else is going on with him health-wise, learning-wise, he is not depressed. You just have to spend five minutes with him to see that."

As James, himself, later explained:
I was just trying to be funny.
However, at the meeting, it was explained to me that parents are not always the best judges of these things...

Now, I want to go on record as saying that the school psychologist always acted in an extremely professional manner towards me. Additionally, she made a point of saying in front of my son's entire team at a later meeting:
"I have absolutely taken suicidal ideation out of consideration for James."
But as a realize that someone considered suicidal ideation AS A POSSIBILITY for your child, even for a moment...well, if you are like me, you will be hit with a sudden need to cry briefly a couple of times a day until the reality of it all sinks in. And some of these times will unfortunately be while you are working.

The day after this first team meeting, I sent in a copy of James' diagnosis letter, date-stamped by the school district as received in May of 2004. Just as he was transitioning out of preschool, and immediately before the district secretary typed up a new folder for him: a folder that would hold all the records produced during his years in elementary school.


Lissa said...

This makes me sputter and fume. MADDENING.

Do you think they GET it now?

Jennifer said...

Ignorant asses teaming with ignorant assholes!
I'm so sorry that this is your experience thus far. Have you considered bringing in an advocate?

Kathy in Upstate said...

I don't know how the system works, but you have to wonder...
(a) what happened to that letter after they date-stamped it in 2004;
(b) why James was eligible for special ed if they thought there was no diagnosis.
(c) why they never asked for a doctor's letter if they couldn't find one.

Spectrum of Possibilities said...

Lissa: I think that there is a beginning of an understanding taking place. At very least, I do know that everyone acknowledges that James has health issues b/c the principal spoke personally with my son's immunologist.

Jennifer: I think this was a groupthink issue, yes, of the type you suggest... And ironically, I now get paid to sit in as an advocate at other people's IEP meetings. But I am thinking that I will ask one of my co-workers to come to *my* next IEP meeting...

Kathy: In this week's meeting the school psychologist and the new CSE chair started to talk about how this could've happened. The CSE chair was so surprised (the old CSE chair left at the end of the summer, so we have an interum) at what he was hearing...I thought his eyeballs were going to fall out of his head when he heard that "suicidal ideation had been taken out of consideration."

What I didn't get into in this post, and what I feel was part of my problem with this district, was that I have always felt that both of my children had nonverbal learning disorder. I came into the district saying that they needed occupational therapy and speech therapy and social skills support b/c of NVLD. The thing is that nobody had heard of NVLD? Ben's teachers in first and second grade both told me that the "only thing wrong with Ben was his mother." So, the groundwork for me being crazy was already in place before James ever entered the school.

The fact that I was ultimately found to be right was never addressed by these teachers. And Ben's fourth grade teacher--the only who told me "he'd heard all about me" ultimately came up to me at the end of the year and told me that he'd heard negative things about me from earlier teachers and that he felt they were misguided.

When I started saying that James had an autoimmune disorder but was remaining healthy b/c of antibiotic therapy...the logical appropriate thing to have done if there was doubt would have been to ask for a new diagnosis letter. Yes. This whole situation, from the first moment I walked into this district with Ben 7 years ago, has been so bizarre and illogical so I can't say that I am grasping all of the dynamics yet...

The only thing that I can figure is that if they'd asked for a letter and I couldn't provide it, they would have HAD to pursue something legally (like CPS)? And they didn't want to make that effort?