This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Wednesday, September 4, 2013
Hurting for me and my child
What a horrible couple of days this has been. I have been battling with Bellevue Public Schools over what started as a simple question. I apparently opened my big mouth and started something I can't take back. I emailed our services coordinator about checking into transportation for Jayen. It has just been so crazy driving 40 miles everyday to get the kids to and from school, Jayen is in underwear all day long so that hour between drop offs is scary, and Jayen is now eating school lunch (which he previously wasn't able to) so riding the bus seemed to be an option again. The services coordinator suggested it didn't hurt to ask and that I should talk to the teacher. Apparently it does hurt to ask. It seemed that it was suggested that if we wanted transportation for Jayen then we would have to move schools. After all the mess we went through last summer trying to get the boys into the same school, now I have to consider moving them. ARE YOU OUT OF YOUR MIND?!?!?!?! Am I out of my mind? After emailing the teacher again and explaining how we ended up at Bellevue Elementary, I think things really hit the fan. The teacher emailed back stating she would check into the situation. Then I received a call from the services coordinator again. Apparently it would be better received if the information came from her. It seems that the powers that be have decided we can leave the kids at the school and provide transportation ourselves or we can receive transportation (for JAYEN ONLY) if we move him to a closer school. No one knows what school would have openings, if Dalan can transfer too, or anything. I'm so upset!!!! Dalan has an IEP scheduled for September 11th. So if I decided to move them then what happens to him? Jayen for the first time today, went potty in the toilet for the staff. If we move him, how is that going to impact him? Will he receive nursing care at the other school? If he doesn't receive nursing care, then he can't do lunch and can't ride the bus, so we just got nowhere. I absolutely feel like my hands are tied. I knew that Dalan wouldn't receive transportation because I opted him into the same school as Jayen. This stupid mom wanted to support one elementary school, go to one school for parent teacher conferences, participate in one PTA, volunteer at one school, attend one schools after school activities...STUPID MOM!!! I never suggested this school. I didn't even know it was there, but now that my kids are there, have made friends, are starting to get comfortable with the staff and their surrounding, I should move them. Crying myself to sleep tonight. Some day, having a child with special needs will get easier. RIGHT?
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