the "c" word

We arrived at the principal's office on Thursday afternoon to resolve our questions regarding this new Multiply Disabled (MD) program.

He is a nice man. He stood as we entered his office, smiled, and extended his hand. The Child Study Team (CST) lead was there as well, and it wasn't until the start of our meeting that we learned the case manager was in fact joining us.

Communication. Information is useless without it.

So there we were assembled around the meeting table in the Principal's office, with Dan on my right.

I know the woman to my left (case manager) is on the defensive for feeling like I went over her head. Which I did.
I know the woman to her left (her superior) is all too aware of the fact that the principal shouldn't have to be involved in these types of discussions. Which he shouldn't be.
And I know the man to her left, is in agreement.

But when I've repeatedly asked our Case Manager the very same questions I posed to the Principal, her responses were vague and often contained, "I'm not necessarily privy to the same information on an administrative level."

And when I've repeatedly asked her superior, the CST lead, her responses were centered around staffing the MD program (which still doesn't tell me about the program itself), and often contained an impatient, pushy, and quite confusing summary of why this new program would supposedly meet Hayden's needs vs the current one.

I don't want us to ever be "those parents" that the school begins to resent (for lack of a better word). But the fact is before the CST was suddenly outsourced as of a couple years ago, due to budget cuts, we never experienced this sort of miscommunication. Not to mention the fact that the whole economic climate also contributed to our question of funding this MD program, and nearly made us suspicious of some sort of hidden agenda.

The Principal spoke first and maintained that the current Language Learning Disabled (LLD) class Hayden is in, in the morning, has been functioning as both an LLD and MD class. And that the LLD class is going to grow, and there would still be a need for an MD program.

In short, the administrators agreed there was an academic need for this MD classroom and money became available to create it. In the words of the principal, when we asked why the urgency (mid-year) we were now being told it was a simple opportunity "to strike while the iron was hot". To translate, it is realistic that there may be more fiscal cuts any given year. So if their central office is suddenly telling them they can budget the money now... spend it.

There are legitimate plans for the program to grow, and in the meantime they may combine with the LLD class for certain activities. So to calm one of my fears, no, this MD room is not an indefinite class of two. 

But when the only comfort that Hayden's case manager could previously offer us as far as the program growing, had something to do with the idea of a child possibly moving into the district at any give time? Well that's fascinating. We've been trying to sell, and buy, in this exact district for more than a year now. Our own Realtor told us that over a recent 12-month period, a whopping 13 homes sold in this immediate area. But hey who's to say that a bunch of kids won't suddenly move here and all of them be age-appropriate, and have the need for, this exact new program.

The fact is, I do appreciate where they are coming from (both the case manager and the CST lead). The case manager was simply hired by the district (less than one year ago), already the second new staff change since the recent budget slash, and forced to get up-to-speed on her own new case load in a very short amount of time. To add insult to injury, she's also working with a CST lead who was basically dragged back into this situation after already having one foot in retirement.

All this because our governor mandated the most drastic (needless to say, unprecedented) cuts, which basically forced the education administrators between a rock and a hard place. And all staff members were in danger of that chopping block, including the ones that were hired to accommodate children with special needs. "Politics" is as much a four-letter word as any of the others.

Clearly we are not oblivious to external circumstances, but obviously we can not just go about accepting whatever anyone suggests for our son. So when something unusual happens like an unexpected program popping up, mid-year no less, and every time we pose questions we are getting vague answers... we will never simply oblige. Truthfully I think the administrators should be more concerned if we did.

The woman who used to be our point person on the CST, prior to the "team" being outsourced (if you still want to use the word team), had her doctorate in child psychology. She was smart, caring, tough yet logical, and honestly just paid attention to all perspectives. She was our go-to for all things Hayden-related. Our first line of defense for seeking, or discussing, information. I only knew how unusual this was from the horror stories I'd learn from other parents of children with special needs, particularly within the community of those affected by fragile x. Each state has their own resources, some of their own laws, and certainly not every family is going to be so fortunate as to have the best team fall in their lap.

But when we were having our big-little meeting in the principal's office and the woman to my left finally chimes in to defend herself, I refuse to sit there like I don't know better. She is going to repeat the whole idea of not necessarily having all the information, vs the administrators (gesturing to the people to her left), and offering to define her role to me... no. She is not just a liaison. I know our resources and she best not suggest, especially right in front of these higher-ups, anything contrary.

I turned my head to address her directly and before I knew it my almost-shaking voice spoke (something to the effect of), "Actually, in the past our case manager was the person who held all this detailed information. So unless the role has changed, that is what we're accustomed to."

Fast-forward to the closing. We were all in agreement that H would continue to arrive to the LLD class in the morning for the remainder of this school year, and then a regular mainstream homeroom beginning in September. It is a big deal to us that he enter school and report to a room with other students (plural)... and have a sense of belonging... and have a typical place to put his bag and hang his coat.

Next week we will iron out a more detailed scheduled and sign on it, but it will look like the aforementioned. Then he will go to this MD room, but only during the morning when he's not in his individual therapies. The goal is to have the majority of his afternoon continue to be mainstream.

Oh... one other recent development...
camp.

The director from that day camp we're hoping H can attend, did go to the school to observe him. She was definitely optimistic upon meeting him so even though we have many more details to consider, I am trying to be optimistic as well.

She also told me a couple things I already know but will never tire of hearing: his teacher is fantastic, his personality is infectious... and that smile.