I have been a voracious advocate for Pearlsky for 22 years now. Eighteen of them were primarily advocating for her with regards to school. Trust me, the advocacy goes on.
I like to think I was pretty good. Effective. The majority of my emails to school, the ones where I needed to be advocating for my children, typically ended with “Please tell me where I am wrong.” They rarely if ever did. It is interesting that to this day that tag line is still mentioned in the superintendent’s office. They agree; I typically was not wrong. I am not patting myself on the back, it took research and sometimes swallowing what I really wanted, in order to make sure that I was right.
I am now taking on special education advocacy jobs that other’s don’t want. I have been hired by a young woman, 19 years old, who is fighting against her mother getting custody, needs advice with her special education decisions, etc.
The one that hurts is a five year-old boy. I got a call from a social worker at a palliative care facility about a grandmother who had full custody of her severely disabled grandson. No one has ever explained to me where the mom and dad are. Grandma appears to be uneducated and of a lower socio-economic status shall we say. The social workers do not know education law, and for various reasons Grandma was refusing to send the boy to school (not mandatory until age six, sort of). The boy’s IEP gives him various services including a full time 1:1 nurse. Oh, and there is no money for an advocate.
I went to visit Grandma and the boy. I saw Pearlsky. I saw David. I saw Chris. I saw Sophie. I saw another one of our kids. He is cute as hell (do real men-bloggers say “cute”?), fully disabled, and gave me a crooked smile to die for.
The case may go for a hearing, but I think I am working out a solution for both parties. I will talk about this more in another venue, this is Pearlsky’s blog. But I mention this case because it brings me back 17 years, back to Pearlsky in my arms, or lying on my chest, a toddler (alas, one who never toddled).
I have learned an incredible amount. I was a good advocate for Pearlsky, but the laws have changed over the last 20 years, and now my knowledge has exploded.
I recently won a bullying case. A big one. How? I did a lot of research and had an inkling that I could claim sexual harassment as part of it. Part of the bullying was the equivalent of teasing Mary Tut by calling her Mary Slut. I researched. Found things called “Dear Colleague letters,” “Special Education Advisories” and more. I told the parents what I found, and over the objection of our lawyer, and later to the great consternation of the district’s lawyer, I filed a complaint with the feds (U.S. Department of Education, Office for Civil Rights – “the OCR”). It took a while, but we won. Big time.
Back to Pearlsky. Remember that case against the school nurse who would not allow Pearlsky to get her amino acid, the only thing that keeps her alive? One phone call to the State Attorney General Office and her Director for Civil Rights (who is now the AG) immediately called the Superintendent and demanded he fix the situation. It still took about three months for a resolution. Now I know … one complaint to the OCR and things would have been much different. Quicker results, retraining, shit hitting the fan, and more. I did not realize the full civil rights angle nor the power of the feds.
Hindsight. I could have done much better for Pearlsky, but I did the best I could with what I had. And yes, I know I did very well. All of that experience, and all my new knowledge, is making me that much better at advocating for others.
I guess it is time to have another kid …
I am late on the welcome back committee and am so glad you are back. Hindsight is hindsight and you did a phenomenal job with Pearlsky. It is easy to look back and say if I had only used OCR so many years ago – but would it have the same the results today as 17 years ago? There is no way of knowing. But today, you know what they can do and have a new weapon in your arsenal. Have a beer, my dear. There are much more delicious things to beat ourselves up over these days.
(yea, I soooo ‘get’ this.)
You sound like an amazing guy and a great dad. It’s so good to hear from you again.
So encouraged you’re using your experience to help others in the same boat. Advocacy is a tough gig.
I assume said kid would spring full grown from the head of Zeuss? Or is there something you haven’t shared? Anyhow, hindsight is always 100% and sort of useless. If I knew in 1976 what I know now my son would have had more services but in the long run he’s fine and that’s the sort of thing to focus on.