Fragile X Syndrome is a genetic disorder that we never even heard of until our son was born. FXS is the most common inherited form of intellectual impairment & the number one known single gene cause of autism. I'm here to raise awareneXs and blog our story.
Clouds, May 2010
Monday, February 6, 2012
i don't even have asthma
So last Thursday we attended a (quite intimate) Meet & Greet at H's school, with the new MD program teacher. (If you're confused read the post from Tuesday, December 6th-- "Hayden, MD".)
She seems great. But there we are in a room with the current LLD teacher, the Vice Principal, the Child Study Team manager (or whatever her formal title is-- the one that H's case manager works with), one other parent, her case manager, and the new teacher.
Hardly the appropriate setting to ask questions, even though they kept asking if we had any. I finally blurted out, "if one of our boys is absent, is the other one just going to be in here by themself?"
I mean, when they told us they were beginning this new program, and explained that H is one of the students the have in mind for it, they left out the part about him being practically the only. The other student in the class has autism. He is verbal, but they're still working on encouraging his social skills. He also has some austistic habits such as licking his sleeve or arm, and the hand-flapping.
I looked up at the bulletin board and there was a whimsical character of some sort that says "Our Class". There are maybe five or six coordinating pieces around it-- one for the teacher and the others for the students names. Three pieces were blank, and then there was the teacher's name, Hayden's name, and the other boy. I felt sick. This ain't no mainstream public school classroom.
The following morning his current K teacher (bless her heart) called me to give me a heads-up that I'd probably hear from his case manager, very shortly, about a signature page to begin H's transition into this MD class. (Yes, when we asked the night before about when this will begin, they said, "tomorrow and/or Monday".)
So just to summarize... we heard about the program the end of last year. The only updates I ever got along the way, were in regard to the interview and hiring process. Not once did anyone explain why the introduction of the new program, and why such urgency. Next thing I know Hayden's AM teacher (LLD class) is asking us about dates for a Meet & Greet she was asked to coordinate. I was informed of a tentative date from her, before the Case Manager ever even called me.
Back to Friday morning and I am one heart palpitation shy of breathing out of a paper bag. I posted a sort of emergency feedback request in a closed fragile x group on facebook, and quickly gathered as much ammo as I could before my phone would ring and it would be the Case Manager.
When you are faced with a challenging situation, people will offer encouragement... tell you that you’re the best mom. Especially parents of children with special needs... that we are superheros. And our kids are so lucky to have us. And I have always been so uncomfortable with that because a parent has a tough job period. And I honestly don’t believe I deserve any more credit than the next parent, even though our circumstances may not be comparable.
But yes, sometimes we (parents of such children) come across other people, or are faced with certain situations, that require us to put this superhero cape on. For each of us, the letter on the back may be different. I do not imagine mine to be “M”, or “C”. It’s a big, bright, straight, strong “H”. Because I may be the one wearing it, but he’s the one giving me the strength.
Lately I keep having to put that damn cape on that I wish I never had to friggin wear in the first place (but I am at least forever thankful that my child has absolutely no idea when I wear one). I will admit that as I play this role of mom & the Advocate, I can picture that letter H & remember the encouraging words of those closest to me. That morning I told myself I will swallow that awful lump in my throat when I need to be my son’s voice, and I will not only be heard I will be listened to.
I never like to be that person who asks for encouragement— just a personal thing with myself. But that morning, I said to myself fine. I am a superhero. I’ll take it.
And I get on this call with her, and I still have zero understanding why she immediately wants to drive over a signature page to start this transition for Monday. Finally I said she could fax it over, but I would likely return it in his backpack after the weekend.
Still unsettled, I went into the weekend promising myself I would not think about this crap until Monday. Saturday H had a classmate's birthday party to go to, and when I saw the birthday boy go over to H and give him a hug because he was happy to see him... I felt like calling that Case Manager right there on the spot and giving her a piece of my mind.
But this morning arrived and I knew we would speak again. Turns out she meant to fax me a 'Consent to Amend the IEP Without a Meeting'... page. Absurd. As if I should just sign on something without even knowing what the hell I'm agreeing to.
She also faxed me a proposed transition schedule today. I don't even know how many conversations have taken place during the last week, but at least I finally feel like I'm being heard.
When H's Case Manager ended the call this afternoon by saying she's impressed with us, thankful for all the knowledge we've shared, & that I'm the one she has learned from... I know there's hope.
I refrained from pointing out this is only the beginning, but I'm thinking she figured out my motto by now: you do right by my guy I'll make sure every damn administrator in the whole district knows it. In writing. You do wrong by my guy...
that cape I was talking about can turn into a broomstick.
For now I am agreeing to a half hour daily transition pending consideration of my additional comments page, attached to the signature page. To pull a few clips to paraphrase:
"...we do not want Hayden to perceive the setting as isolating. Nor do we want other students to perceive his inclusion in the MD program as being isolated."
"The learning potential in an environment with such an ideal student-teacher ratio will be beneficial. However, we do not want any of his academic progress to cause his school experience to be counter-productive in other areas, such as the socialization he continues to benefit from in Kindergarten."
"Our expectations are to build up to a schedule that will be enough for Hadyen's academic instruction needs, but never the majority of his day."
"Hayden will not have the same benefit from replacing mainstream class-time with socialization-time only during lunch, recess, music, and other specials which are here & there."
"Overall, Hayden needs to spend an appropriate part of his day around peers who are going to teach him behaviors that are beneficial."
Our next Progress Meeting is February 23rd.
Haven't put the paperbag to my face yet, but I'll keep it nearby.