Twelve tips when raising a disabled child

As a parent of a disabled child, how can you properly care for your child and still have some time for yourself?

1. Get the right social worker for your child, (ask your health visitor). If you’re unhappy with the social worker you are given and don’t feel he or she is helping you as much as you need, ask for a replacement. It is important that you have someone who is going to help you with any problems that arise and that you feel supported.
2. Ensure you are getting all the available help and benefits that you and your child are entitled to, your social worker will be able to help you with this.
3. Make your own choices regarding your child. Don’t be bullied into doing what other people think is best. Get as much information as you can and find out all the available options, but remember you know your child best.
4. It’s ok to feel upset or angry that this has happened to you. It’s how you deal with these emotions that count.
5. Learn the art of patience! – you may find your nerves are being tested regularly. Find ways to cope with stress. Make sure you try to find even ten minutes a day for some "me time".
6. Find the right support group, ask your health visitor about local play groups or organized day trips in the holidays for children with age and disabilities similar to your own
7. Find the right school for their needs whether this be a special school or main steam school with a statement. (https://www.gov.uk/children-with-special-educational-needs/statements)
8. Have someone to talk to who will really listen to you; this could be someone on a help line or a social worker. (Scope Response – 0800 800 3333) and your friends and family too. Remember people don’t know how you’re feeling if you don’t tell them.
9. Have a break from your child to spend time with your other children, or by yourself doing something fun or just having a rest. Respite is always an option: this can be in the form of overnight visits or just someone coming to take your child out for a few hours, or coming to your home and watching your child there. There are always long waiting lists for respite so ask, even if you're not sure your ready for it yet. Chances are by the time you reach the top of the waiting list you will be ready!
10. Accept your life isn’t how you imagined it would be - that things are different and your life is going to have to take a different path. For example, if your child hates parties there are only so many times you can put yourself and your child through the upset and stress of it.
11. If at first you don’t succeed try again. One thing you learn when you have a disabled child is you have to fight for a lot of what you need. Example: if you apply for disability living allowance and you know you should have been awarded the higher rate, you need to appeal. If you need help doing anything like this, this is one of the things your social worker is there for.
12. Have fun! Our children are only young once and this time will past so quickly. There is so much they have to teach us. Embrace their differences, understand their ways and enjoy the uniqueness that they bring to your family life!