- don’t be ashamed to say HELP!
- find somebody who will LISTEN (not necessarily a professional), somebody you can trust.
- don’t be afraid to think of yourself and your own needs.
- sometimes people make insensitive comments, be prepared to cope with these.
- if you do join a group make sure you benefit from its support and are not burdened with more problems.
- its important to have an interest outside your family, it helps to keep things in perspective.
- try to do things as a family unit, its easy to focus on your disabled child.
- people constantly phoning is nice but sometimes can become tiresome, take it off the hook, relax and enjoy a quiet period.
- have a weekly routine which you can cope with, don’t give yourself more problems, you don’t want to leave your self exhausted.
- get information about your child’s condition through organisations like CHIP+. (Tel 01463 711189)
- explore the benefits system, don’t be embarrassed to ask, it's your right as a parent.
- other parents can offer good advice and helpful information gained through their own experiences.
- don’t be afraid to teach your child to be as independent as possible. It will make your life easier in the future.
- and last, remember your child’s day doesn’t have to be filled with something educational every minute, do things which you both will enjoy.
- write things down when talking to professionals.
- get a notebook and a diary.
- use your information pack to store information/leaflets.
- keep notes of telephone calls and letters you send and receive.
- if going to appointments try to take someone else with you for support.
- don’t be afraid to ask questions and, especially if you don’t understand the words which are being used, ask for an explanation - its your child that's being discussed and you should understand what’s being said.
- let people know in writing if things are starting to go wrong, don’t wait until you are at crisis.
- have faith in your own experience as a parent - you know your child better than anyone.
After you have heard the news about your child’s problem you then have to face family and friends.
- What do you tell them?
- What will they say or in what way will they react?
Passing on the news is never easy, many parents find that relatives are unwilling or unable to accept the news. They may even ignore the disability and hope that the problems will disappear or expect that the problem can be treated and cured.
This will add to your anxieties and may make life very hard. It is important to remember that at this time emotions can run high. It can be a very stressful period. Not only do you have to come to terms with your child’s disability but so do your family and friends.
Especially in the early days try to talk openly and calmly about the nature of your child’s problem. Your family will also be upset and by talking to each other you can give each other support.