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How do you let your child be independent if they have epilepsy?

Fri, 10/13/2017 - 11:18
My child is getting older (teenager) and his epilepsy is for the moment controlled. I am finding it hard to accept that he is doing so much better that I can actually loosen the reins a bit. But I still have that feeling, what if, what if, what if... How do you let a child with epilepsy go off on their own knowing that they could be alone when they have a seizure? I hate rolling the dice on his safety, but he is growing up and unless he is going to live with me forever, I need to let him live. My rational brain and my maternal instinct to protect are having a vicious fight. How can I send him off to college one day? How do you do it?

Comments

I remind myself to actively

Submitted by Amy Jo on Sat, 2017-10-14 - 00:59
I remind myself to actively practice and look for opportunities. I also practiced on my older kids. While the older kids don’t have epilepsy, the end goal of independence is the same. If your child gets to practice and deal with increasing amounts of  independence, they will build confidence and capacity. Another consideration is to not freak out when something goes wrong, cause something will. If nothing ever goes wrong, you are not giving enough license to make mistakes. Those mistakes are golden opportunities where if you build in the important things (call any time, never get in the car if someone is considering driving under the influence), they know they can work with you on their problems. Forgetting to take their meds will happen and there may be consequences. Wouldn’t you want your child to have that kind of practice closer to home when they can deal with consequences where someone has their back instead of deciding to go to college as far away as possible because that’s the only way out they can see? It requires a practical and objective perspective on what is reasonable to push for, where your child’s comfort zones are and how to stretch those Our youngest is getting CBT to help with anxiety/pain. Early approaches included asking what’s the worst that could happen, looking at how often something bad has happened, reframing negative situations to positive ones, etc. Other aspects are putting oneself into situations to practice, everything takes practice.  If your child has dangerous tonic clonics while on meds then the approach is going to be very different than if seizures are controlled. But if it will help you, maybe you check out those watches that can link with a cell phone to call someone. Our child doesn’t have tonic clonics, worst is complex partials that completely blow the memory, no system for detecting complex partials on the market that I know of. 

Parents with kids with

Submitted by just_joe on Mon, 2017-10-16 - 17:34
Parents with kids with epilepsy are not the only ones with "what if's". I am the one of the kids that had epilepsy. I did what needed to be done and yes Mom watched me like a Hawk . She also knew I knew more about my epilepsy and what needed to be done then she did. Dads were the same. I worked most of my life. I was working to get money for my college educations. Back then there were no credit cards. Student loans were unheard of. I had my own apartment while being a senior in HS. So they had to stop the what if's and depend on me to inform them and go by and see them. They knew where my apartment was. I was the one that visited. Working a 40hr week and taking college courses 3 nights a week I stopped by the house on my way home at night. My friends knew where I lived and they also knew where Mom lived. Oh and yes Moms telephone number. Independence comes with risks. But a person can overcome those risks. I went into status back in 1969 and it was after I left Moms house. She was called by my friend and I was then taken to the hospital. Mom stopped her worrying about me more since she knew I had more friends that knew about my epilepsy and they would call her. 

Changes can affect ones

Submitted by just_joe on Mon, 2017-10-16 - 17:38
Changes can affect ones medications. I had to have my dosages changed 4-5 times in a 18 month period of time. All done because I had changed from a kid to a teen. A 45 lb and about 13 inch height change

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