child with disability6 ways of coping if your child is seriously ill or has disabilities

Dealing with a poorly child is hugely challenging for parents – speaking from personal experience Yvonne Newbold guides you through the minefield of emotions

1. When you first hear the awful news, your emotions will be all over the place. Accept that you will feel lost, frightened and desolate. Do whatever you feel you need to do to get through – cry, rant, scream, yell, throw things – just get it all out whatever way you can. Don’t beat yourself up about expressing all these negative emotions, it’s actually very cathartic.

2. You will probably feel that you can’t cope, that you’re not up to the job of parenting a child who needs you more than ever, and the future may seem bleak and terrifying. You’ll be fine. You have been given the best teacher in the world – your own child. Watch and listen and respond to your child and they will help to lead you both to where you need to go. None of us felt competent at first, but take it a day at a time, sometimes even a moment at a time, and before you know it you’ll be the best expert your child could ever wish for.

3. Breaking the news to friends and family is hard, and having to repeat the same sad news repeatedly, as well as having to then help them deal with their shock, can be draining, and can rob you of the resources you so badly need for you and your child right now. People close to you will think they are being supportive if they ring all the time for updates, but it can be exhausting when the phone rings constantly and every time you’re just talking about all the negatives. Don’t answer the phone if you don’t feel up to it – that’s why answerphones were invented. Or leave a voicemail update message once a day so others can still be updated without talking to you. Or sent a daily group text, or even better, get a friend to do it for you. Facebook is ideal for this – you can even set up a private group or use the Private Message facility

4. You’ll need all the help you can get, but that help has to be right for your family, and from people who are sensitive to your needs. Work out what you are struggling with, and delegate specific tasks – it could be doing the shopping, the ironing, cooking an evening meal, cleaning the loo – don’t be ashamed to ask, it doesn’t matter, people will pull together to support you if you ask in the right way. You are in shock, you can’t do it all, and it’s at times like this that friends and family really can come into their own.

5. Some of your friends will fall by the wayside; it’s at times like this that people show their true colours. Let them go. Others will surprise and amaze you – help can come from some very unexpected places. Try, as soon as you feel strong enough, to reach out to other parents in a similar situation. Once upon a time, I didn’t know anyone who had a disabled child, now I barely know anyone who doesn’t! These are the friends that have kept me going, made me laugh, accepted me and my children for who we are, have never judged me or given me really annoying and impractical advice. These are the people who “get it”; there is an affinity, an unspoken understanding, a real sense of belonging and acceptance among special parents like no other group of friends I’ve ever known. I couldn’t have done any of this without them.

6. Don’t look too far into the future. It will freak you out and cause untold upset and heartache about things that, in all probability will never happen. Things will turn out far better than you could ever expect right now, the future always takes care of itself and it’s never anywhere near as bad as we all think it will be – in fact, it’s more often than not surprisingly good!

The Special Parents Handbook by Yvonne Newbold, author is available on from £9.38


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