As a parent of a child with a disability or with special needs you will be only too aware of all the challenges you encounter when you try to get the best help you can for your child. Sadly the list of problems faced by so many children, and their families, never seems to end. Each disability brings with it its own special concerns, but there are many issues which parents share in common.
There is understandably the shock and disbelief on learning that your child is in anyway disadvantaged. It is very hard to accept that this is so. And quite usual at the beginning for parents to block from their thoughts the fact that their child is going to need extra help and will have to be cared for in a special way, perhaps for life. It is as if denial of the problem will make it go away. If only that were so.
The gradual acceptance of the situation is very painful. You may still be agonizing over the question of whether you or your partner are somehow to blame for your child’s condition. All parents go through this kind of anguish. There is a desperate desire to blame somebody.
You may already have felt the deep anger experienced by almost every mother or father in this situation that it should be your child who will have to struggle with a physical, an emotional, or a cognitive disability. You will be know the sickening fear of wondering if you can cope with what you are hearing.
Practically all families wish to do the best for their child, often against tremendous odds. And top of the list for most parents must be to find the best healthcare available. But parents so often run up against a brick wall when trying to get a diagnosis about what is happening to their child. Some physical disabilities are recognized from birth, some children develop an illness which produces them, while some disabilities are more insidious and gradually become apparent as the child gets older and reaches different developmental milestones. It can often be difficult at the beginning to put your finger on just what is worrying you about your child. It can be even harder to know where to turn for guidance or information, with the result that you feel totally lost, and quite alone with your distress.
We all like to think that in our ‘caring society’ today all the help which is needed is on offer. Unhappily that is not usually the experience of mothers and fathers who desperately seek the advice and support they need to help their child in the circumstances I am discussing.
What is the best way to proceed? The first thing is to get as much information as you can about the specific condition which has aroused your concern. Today with the Internet there is more detailed information available to us than previously. Once you can arm yourself with some knowledge about your child’s needs you are in a stronger position to stand firm against the red tape and possible indifference you may meet on the road ahead.
The more facts you have at your disposal, the more confidence you will have to speak up for your child. This is important from day one, and will become even more so when there are battles to be fought about education and other help required such as physiotherapy, occupational therapy, speech and language therapy or psychotherapy. Lack of funds is often given as an excuse why some services are not available. Don’t take this lying down. Ask questions, and go on asking them.
You may need help in getting the right equipment, finding ways of entertaining your baby or child, and even in gaining some respite for yourself. Don’t fall into the way of thinking that only you, and you alone, can care for your child. A worn-out parent will be little help, and especially if you have other children to care for it must be kept in mind that they need time with their mum or dad too. So get assistance before you crack under the pressure.
Remember, too, that having a child with special needs can put an additional strain on any marriage, so try your hardest to get out from the home together for a little while, even if only for the occasional meal. Make sure you talk to each other about your fears and worries. Talk to other people too. Talk to the neighbours, talk to the local school and any local groups. Set up a rota of family or friends who will give you a short break. Look for local charities and organizations who will be only too glad to find people to help you and your child. This will have the added advantage that it will gain local awareness for a particular disability. Ask at the local schools or colleges if some of the older pupils will come in and play with your child for a while.
Try to link up with an organization which has specialist information about your child’s disability. You will find the tips they can give you will be invaluable. Make sure you know your child’s rights about education, etc. Chat online to other parents who share your concerns, and learn from other parents who have already fought some of the battles which you foresee ahead. One parent said to me this week ‘My advice for new parents? Tell them never take "no" for an answer’. So find your voice and make yourself heard - whether it is to a medical, or educational professional. Your child deserves nothing less.
On the Internet you will log onto information about all kinds of disabilities, as well as getting backup for yourself as a parent, so click onto any support group you can.
Jill Curtis is a senior psychotherapist working in the UK. She is the author of fourbooks: Where's Daddy? Separation and Your Child, Find Your Way Through Divorce, Does Your Child Have a Hidden Disability? and Making and Breaking Families. Jill Curtis' website Family Onwards provides a vairety of articles on family life.
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