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 very active children. They can far out run me and I'm not too speedy on my chair! I think i need L plates on it! They use this to their full advantage and know what they can get away with.
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. There's never a dull moment with children though and I can count on them to make me laugh.
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. My children deal with my falls by climbing on my head or throwing themselves down too! It's good to know they have people to talk to who can help them deal with the consequences of my epilepsy. They want Mummy to be out having fun and playing with them at the park but sadly that isn't possible at the moment. I want to be that mummy too and I can't wait for the day I step out of this chair and we start having normal family moments together.
Here are some of my top tips for dealing with children and 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
For more information about epilepsy, go to www.epilepsysociety.org.uk
If you would like to talk to someone about epilepsy, call their confidential helpline for information and emotional support.
Epilepsy Society Helpline 01494 601 400 Mon and Tues 9am-4.30pm, Wed 9am-7.30pm