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.
Sunday, September 20, 2015
Religious Education
I'm always nervous about leaving Jayen with someone new, so when we signed him up for religious education classes I made sure to talk to the director numerous times. She understood Jayen and his needs and remembered him from children's liturgy on Sundays. She didn't see any reason why he couldn't participate in classes. She gladly welcomed and encouraged him to participate. Last week was their first class. I hung around at first and told the teacher about him. I was so excited to learn that she knew some sign language and would work with Jayen. It really sounded promising. I'm still very excited about the teacher working with Jayen, but something this week really confused me. After class the teacher approached me and told me about the project they were working on today and suggestions for how Jayen could participate. She said they were asking the kids their favorite colors but didn't know how to include Jayen. I turned around and asked Jayen, "J, what's your favorite color?" He verbally responded, "Bu". He also signed the color. I didn't know what to say to the teacher other than just ask him. I told her that he understands so much receptively but expressive is his problem. He has a ton of word approximations and can usually get his point across with what he does have. I also gave her the idea of two choices with her hands and he has to point to the hand that he chooses. I'm trying to let this all process. I really think she cares for him and wants to include him, otherwise she wouldn't have asked, but that seems like such a silly question. I'm thinking I might stick around a little longer next week and give suggestions during class.
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