There is a dance that parents of kids with needs boogie across NYS called Student Support Services. For some it’s a ‘Flashdance’ a quick jig with their school system to get supports and services in place. For others-it’s a ‘Dance Marathon’ a never getting a breather, meeting after meeting, full endurance workout to even get the basics in place.
As a student and family advocate I often wonder about “the process.” Why is it so complicated for some and easy for others? Why is the ‘how to’ on some school websites so different from the actual ‘how it goes down?’ Why does State Education and Federal Education Department’s guidance say one thing and some schools across the state say another? Why don’t they all just follow the rules?
I don’t have any of those answers.
As I sat through a meeting with a parent and school faculty the other day- with contrary statements being throw out when compared to information given in emails, school website, and other meetings with this parent- I was perplexed, again. As I listened to ‘trust us,’ from people who already broke any trust this family may have had by misinforming, not responding, and not doing what they agreed to—I saw Mom’s face: Despair, frustration, and sadness. When the educator told the Mom “Just call another CSE” like it was that easy—no regard for a family fighting for balance: working many jobs, ensuring the health and safety of their child with special needs, ensuring the needs of their other children, the doctor visits, the up all nights, the emergencies… No regard for the fact that the last CSE seemed so productive at the time—just for the parent to walk out of that meeting and have everything determined thrown out the window under the tune of “that’s not what we said.”
I will never forget the look on that Mom’s face.
Today, there will be calls to State Ed, legal teams, and more.
I also won’t forget…today-this brave Mom committed to continue to ‘dance’ for her baby.