Living with autism and epilepsy
Silas is autistic and goes to a special needs school for autistic children. I have gone from learning how to deal with autism, to now figuring out how to live with epilepsy. His epilepsy journey started in February, he can have up to 14 seizures a day. He usually has absence seizures or tonic clonic seizures. But also experiences myoclonic seizures, nocturnal seizures, and many other types of seizures.
Find out the link: autism and epilepsy
How are you supported on your journey?
We've got lots of friends out here in Texas, we moved from Sacramento, California, to live near friends who have an austitic kid. All our friends here have autistic children but only Silas has epilepsy too - he's non-verbal and has behavioral issues. This is our main support. We also switched neurologists, because our first experience wasn't good. Our new neurologist is excellent, we see Dr Faux, who is part of the level 4 epilepsy center at UT Health San Antonio. He took time to listen and understand what had been happening with Silas, he sat with us for over two hours as he wanted to go over everything. I have his work number to directly speak to him with any updates.
Learn more: what is a specialist epilepsy neurologist called?
Finding resources and information:
I feel there are more social programs for children in Texas than anywhere else. After the diagnosis, we received lots of information from the Epilepsy Foundation of Central & South Texas. As a family we also attend church, another mother there has a daughter with epilepsy. It all started when she was 14, her daughter has a lot of seizures every day. She’s the only other mother of an epilepsy child I know, she helps to give support, and I’m able to go to her if I need any advice or information.
Read more: Find epilepsy support groups
Experience of using the Epsy App
Silas takes 6 pills a day, and as soon as he started his medication, I wanted to find something to help track his epilepsy and medications. I use the Epsy App to log his medication; as soon as he takes it, I log it. Otherwise I'll forget! I also use it to log his seizures, things like the time of day and what we were doing.
Oftentimes his seizures happen when I'm driving, I have no idea why. In the notes, I’ll add in the length of the seizures. And also, comments about the postictal phase. Once Silas was unresponsive for over 13 minutes, his eyes were rolling at the back of his head. After a seizure he can sometimes be aggressive or super sleepy. It has currently been over a month with no seizures, but I try to log if he seems groggy or has any hints at having a seizure.
Main advice to others
My main bit of advice would be to make sure you find a doctor you really like. If you're ‘on the fence’, then find another that works for you!
Spending quality time as a family
With two young children, I don't take time for myself. But as a family, we go to Morgan’s Wonderland a lot, it is about five miles from us. It’s kind of like Disney but all-inclusive. People with disabilities, including autism, can get in for free and can still ride the rides because it's adaptive. Otherwise we go to the park. Silas loves his tricycle and has a lot of therapy. He's currently in kindergarten, then after school I take him to therapy, then it’s food and bed.
How can you share your epilepsy story?
If you would like to share your epilepsy story with the Epsy community, you can contact our team at firstname.lastname@example.org and our team will set this up for you.