Thursday, 23 February 2017

Tips for looking after children when you have Epilepsy

In my second post for Telmenow I wrote about looking after children when you have epilepsy.

I was diagnosed with epilepsy almost a year ago now and one of the toughest challenges for me has been looking after my two children, James (9) and Emily (5).
I have atonic seizures, which means I fall several times a day. I use a wheelchair most of the time and it isn’t easy chasing after two active children.

I’m lucky in that my in-laws and my parents live close-by and are on hand to help out. I need help with all aspects of parenting but mainly getting the children to school and back and to various activities. Also, having epilepsy means I can’t drive so I’m virtually housebound at the moment.
My children are fantastic and know that Mummy is limited in what she can do. I have an alarm around the house so if I do fall and hurt myself we can press that for help. Both my son and daughter know how to ring Daddy to come home if I have a bad seizure.
They’ve had to grow up faster than I would like but I’m proud of them both for knowing what to do in an emergency.
Juggling children and a long-term disability is a huge challenge and one we are taking day-by-day. I know I can call for help from family and friends and that is a huge weight off my shoulders.
I wish I could be a normal Mum and do activities with my children but I know they understand as much as they can. One day I hope my quality of life will improve and I can be fun Mum again.

Top tips for looking after young children when you have epilepsy

• Make sure you have family and friends numbers stored in all phones so your children can ring for help, if necessary
• Have an alarm fitted so you can press for help easily

• Get someone to batch make meals for you so you can just grab something from the freezer and defrost a meal
• I use an office chair on wheels around the house to get around
• Make sure school is aware of the situation so they can support your children
• Don’t be afraid to ask for help, most people are happy to help out with school runs or pop to the shops for you
• Online shopping is always useful when you are housebound
• Ask your partner’s employer for flexible working hours so they can be around at school-time. My husband works a late shift so he can take our children to school
• Teach children basic first aid (for falls in my case)
• Give neighbours a key so they can get in in an emergency

1 comment:

  1. I just read your piece through HuffPo, and I wanted to reach out an commend your incredible strength. Handling two children without epilepsy is hard enough...

    Our 10 month old was diagnosed with epilepsy, and atonic seizures, 4 months ago. While this has been an incredibly trying time for our family, I'm happy to report that he is improving after various treatment regimens.

    Please know that your commitment and resolve are extremely appreciated. I wish you nothing but the best in your continued search for a cure.

    Thank you,