There isn’t much I can do for my beautiful boy. I can’t go back in time and undo the “fluke” that caused his brain damage. I can’t get him a new brain that works right. Worst of all I can’t stop the seizures that wrack his little body. As a parent that is the most difficult thing to accept, that you can’t do anything. But recently I have discovered that the one big thing I can do for Jackson is fight. And the last couple of weeks that is exactly what I have done.
I fought to get him ESY (extended school year services) in his IEP at school. Basically I wanted him to get summer school because he needs all the help he can get. They tried to give me the song and dance about how they had to prove regression before they could approve ESY services and since he was a new student they couldn’t prove it, so no ESY for Jackson. Unfortunately for them I’m a mom who is not only a teacher (who has worked with IEP’s before) but someone who has a legal background and has spent the last 3 months educating herself about IEP and federal laws. The Friday before he was to start school was the deadline to sign the IEP and I wasn’t going to sign until they gave me ESY for Jackson. During our morning conversation that Friday I made it clear to the social worker that I knew regression wasn’t the only factor to get ESY. There are about 8 factors the federal government indicates as qualifiers for children for ESY. Jackson falls under more than the regression. The fact that Jackson has multiple disabilities and epilepsy qualifies him. I mentioned a few other laws I felt Spokane Public Schools was breaking in regards to special education and she surprisingly agreed. She said she was getting pressure from above and admitted it was political. I think she was actually happy that I was educated and not going to take no for an answer. She told me she was going to let the chain of command know that Jackson’s mom was knowledgeable and educated about the special education system (although I feel like a total newbie). By noon I had an answer. Jackson was getting ESY! Victory for Jackson!
Then defeat. I got word today that despite the week I spent writing my 5 page appeal letter, gathering 4 letters from Jackson’s doctors and therapist, and doing hours of research, Molina was denying my appeal for Jackson’s bed. I am still somewhere between a major crying fit and punching a hole in the wall. Molina claims it is not medically necessary that Jackson has a bed. The “medical director” told Jackson’s physical therapist today that no matter how many times we appealed the denial, they would just continue to deny us. I just can’t fathom this. Where is Jackson supposed to sleep where he is safe? I feel lost. I can’t tell you how devastating it is to not be able to buy your child something as simple as a bed.
I’ve been knocked down today but hopefully by the time I wake up in the morning I will be able to get back up. A good night sleep is often what I need to wake up pissed off and ready to fight. No matter how exhausting the fighting gets, I know I have to power on. Somehow I will get you a bed Jackson. I don't know how or when right now, but you will have a bed you deserve someday.