Parenting brings many challenges, and one of the hardest to deal with is when your child is ill. When this illness is more than a tummy bug or a broken bone, then it gets even harder. Parenting a child with a chronic health condition brings a whole new list of challenges, and adjusting to the diagnosis can be tough for all of the family. Jump! Mag contributor Tina Price-Johnson grew up with a chronic health condition, and wrote an article for children, published today on our site for kids.
Here’s Tina’s advice for parents of a child with a chronic health condition.
I was 11 years old and in my first year at senior school when I had my first seizure. I was eventually diagnosed with epilepsy and throughout senior school was back and forth to the hospital to see specialists and determine the correct dose of medication. I was generally accompanied by my mum who had to take time off work, and it was my dad who saw my first fit and put into action his first aid training to give me the care I needed at the time. After that it was both parents or my teachers who provided this care.
I was totally freaked out and didn’t know what was happening or why and nor did my parents. In those days you simply did what the doctors told you and didn’t ask questions, and I wish I had asked. So here are my tips for parenting a child with a chronic condition, from the perspective of the child. I hope they are helpful to you:
Don’t Assign Blame
You did not intend for your child to develop this either by accident or genetics. It might be that your child realises you blame yourself and the child will only feel guilty about this. Even if your child doesn’t realise, guilt is a waste.
Don’t assign blame to others, or allow other family members to do so. ‘There’s nothing like this in our side of the family’ type comments should be ignored, or challenged, depending on how much energy you have to do so.
Concentrate on the love and support you can give now, not what might have been the cause.
Ask Lots of Questions
Let your child ask questions too, but let them follow your lead so they know it’s okay to ask. This is very new to you and scary for both you and your child, but the doctor and specialist know what they are talking about and will be able to answer any question you might have.
There may be a lot of tests, such as blood tests and weigh-ins, MRI or CT scans or EEGs. Ask what they are for and tell your child. They will be scared; there is nothing more scary than not knowing why your body is being put through tests. Explaining what they are for will help both you and your child feel in control of what is happening.
Be Honest With Your Child
You know your child best and what is age appropriate to explain to them, but do explain to them what is happening. Let them know why they are going to hospital appointments, what the medication is and what it will do. Keep an eye out for side effects and if they happen, let the child know why.
I put on a lot of weight due to my medications but neither myself nor my parents knew this was a side effect and it caused a lot of problems for me. It made my adolescence much harder that it needed to be. This is just the way it was when I was a child; it doesn’t need to be that way now.
Include any other children you have in the sharing of knowledge and care. Your child will feel very different and may even think they are ‘wrong’ or ‘a freak’ or, in my case, ‘broken’. Not being an open family unit will increase your child’s feelings of difference and of not being ‘like’ other members of the family. Remember, your child might have a chronic condition but they aren’t defined by it nor is it all they are. I used to get driven mad by being called epileptic. I’m not, my seizures are, and they are a small part of the whole of me.
Show Love and Affection
The last one is easy. Lots of cuddles (if you are a cuddly family, if not, whatever it is you do to show love to each other), time together to chat and leading life as normally as possible. You will probably have to change some things about the way you live to accommodate the new situation, but try not to change too much. Don’t overprotect your child (which will be impossible at first, I know). It will take time to navigate the new boundaries your child may have to live within, but they will probably be much bigger boundaries than you realise.
I hope this helps you as a parent of a child living with a chronic condition. There is no criticism here, the fear and worry will be overwhelming and wrapping a child up in cotton wool is a natural reaction. That’s okay.
Anger and sorrow and grieving for the child that doesn’t have the advantages a child without a chronic condition has is also normal. I can tell you though that the experience can be enriching and will widen your horizons in ways you cannot imagine yet. There is positive for your child in developing a chronic condition and if you can help your child find the positive, then so will you.