My Son Is So Much More Than A Case File

I have my “Irish up” at the moment, (how appropriate since St. Patrick’s Day is later on this week), which is just another way of saying that I’m pissed off on behalf of Brian today. Here’s why:

It all began last Thursday afternoon while perusing emails, one of which was from Brian’s new case manager wishing to schedule his annual individualized educational planning ( IEP) meeting on a particular day in a few months. I glanced at it and made a mental note to respond when I was feeling better, as I was coming down with the flu . Apparently not responding within 24 hours was unacceptable, when the case manager persisted with another email 27 hours after the first one, demanding an answer, as she needed to ” finalize her schedule”. That’s when it hit me- this was the first formal/ direct contact that I had with this new person in the 7 months since Brian had been assigned to her caseload.

Last Summer, I had received one of those “form letters” from the new case manager, introducing herself , complete with a name stamp for her signature. When I received this correspondence last August, I briefly wondered exactly when we would speak directly, then got on with life. Roll the tape forward now to the current situation. But before I continue, here is some historical context.

Brian’s last case manager was with him for 11 years, and while we definitely had our bumps in the road early on, we ultimately had forged together a good working relationship. She visited Brian at his school programs and became familiar with his educational needs. This is actually the perfect segue to my main bone of contention at the moment : I learned that the present case manager has not gone to meet Brian and the staff at his current school to observe him in his program this year, even after all of these months. As far as I am concerned, to schedule a meeting right now is like putting the cart before the horse. It would make more sense to get to know my son first at his school, discover what his needs are, and meet the staff who work with him, then call a meeting. I would think you are then better prepared to discuss my son’s case at his educational meeting after the school visits, but I’m making too much sense, I know.

I realize that nothing “personal ” is meant by what appears to be a total lack of interest in my son’s educational program. Special needs families are victims of an educational bureaucracy in this instance: there are not enough case managers to handle the huge caseload. Whether or not this is always true, is besides the point. There is absolutely no excuse not to visit a school program at least one time ( then provide parents with feedback ) before walking into an IEP meeting. Period.

I am confused as to how one can expect to be a part of the decision-making process at Brian’s IEP meeting, when you have never even met him. Brian is truly so much more than a case file or an obligation to sign off on. He is a person with special needs that requires his own individualized educational plan created by a team of individuals who know him. You can be sure that this story has not yet reached its conclusion. I have already begun the process of diplomatic, yet direct negotiations to ensure that the new person sees Brian at his school placement before his IEP meeting. I hope that this dialogue goes smoothly, but am prepared to go further if it does not.

Advocating for our special children is sometimes very frustrating. This story is just one example of many. Collectively, special families could write volumes on their advocating experiences, including: The Good, The Bad, and The Ugly. This is definitely not an easy road and requires lots of wisdom, tenacity, and especially patience, which I don’t always have, particularly today, as you can tell. It’s good that tomorrow is a brand new day.

OK- rant over- thanks for listening! Until we meet again, thanks also for reading. 😊👍🏻

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