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