A Special Child in the Family

Early Days

 

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Finding Out More

I don't know how you were given your child's diagnosis. Perhaps the doctor bluntly told you the basic facts and nothing else. Maybe you were more fortunate and were given time, consideration and a sympathetic explanation of what was wrong. Whichever way it was for you, two apparently contradictory facts hold true.

First, you will remember that moment for the rest of your life. Little details like a crack in the wall or the way the doctor fiddled with his pen will remain indelibly printed in your brain.

Second, much of the actual information will have failed to sink in, especially that given after you were actually told the diagnosis. One mum spent a whole hour listening to a full explanation of her son's temporal lobe epilepsy from a very considerate doctor. But when she related the visit to her husband, all she could remember was the name of the condition and the fact that he might have to go to a special school. You may have fared better but the chances are that only the basic diagnosis and a few disjointed facts have sunk into your brain. Perhaps a short phrase like "He'll never walk" or "She'll die before she's five" dances round your head in confusion without you fully remembering the reasons why.

This situation is almost universal. It's only after the appointment is over and the shock has worn off that questions flood into your mind, questions which must be answered if you are to understand your child's problems fully.

The professionals

Obviously your consultant is a good source of information. He should understand your difficulties so he won't be surprised if you need him to repeat his explanations several times. Don't hesitate to ask questions for fear of looking stupid.

Your GP and your health visitor are also possible sources of information but they are not specialists. If this is the first time they have met your child's particular condition, they may not be able to answer all your questions straight away. However, they should be able to find out the answers eventually.

Voluntary groups and societies

There is a wide range of voluntary societies working on behalf of children with special needs. They vary widely in size and in the help they offer but all are good at providing basic information. Contact any which seem to cover your child's problems - there are some addresses at the end of this book but you can find others via your local library or the Internet. Contact a Family is another good starting point as they have information on an enormous range of conditions and support groups.

Many societies publish regular newsletters to keep you up to date on welfare issues and the latest developments in treatment. They are usually willing to put you in touch with other families and some operate networks of parents willing to support others through the early stages after diagnosis. Keeping in touch with the relevant voluntary society for your child's condition can stop you feeling too isolated.

Books

I hardly need to suggest books as a source of information - you must have already thought of them or you wouldn't be reading this one. I just want to warn you not to fall into the same trap I did.

When my elder son, Paul, was diagnosed my instant reaction was to go to the library for more information. I was heart broken when the first book declared that all children with cystic fibrosis died before they were two. I looked at my apparently healthy 16 month old toddler in despair. Why hadn't the doctor told us how little time was left? Fortunately I glanced at the date of publication. The book was twenty years old, dating back to the time when treatment was virtually non-existent. The real situation was much better and improving all the time.

I'm not saying it's not worth reading old books - just remember they may paint an unnecessarily gloomy picture for the treatment and education of special children has improved enormously over recent years. Of course, people are the same as they always were so a description of how someone felt in your situation will still be relevant even if it is rather old.

The Internet

The Internet is packed with information on health and disability so if you don't have access at home, see if you can spend some time on it at your local library or internet café. As always the problem is finding the information you want amongst the millions of sites available. The Contact a Family site is a good starting point ( www.cafamily.org.uk ) as are any of the major search engines.

Because the Internet is international, some of the sites you meet will originate in other countries so their facts about services and benefits won't be relevant to you. But they may still have useful information on your child's condition and may even have ideas on treatment you haven't met before. Some of these may be worth investigating further, especially if they come from a reputable source, but it's important to remember that anyone can put a site on the web so cranks and quacks abound.

Other parents

Other parents with children similar to your own are an excellent source of support and information. It's good to chat to someone you know understands how you feel. As well as helping you understand what the doctors have said, they often have sensible ideas on overcoming practical problems. They may have ways to make physio more fun, ideas on making a boring diet more interesting or tips on how to get your child to swallow his medicine. If their children are older, they can also let you see what the future may hold, which may not be as gloomy as you had imagined.

Talking to local parents of special children can make you feel less isolated even if their children's problems are not exactly the same as yours. They will also have useful information about the support services and schools in your area.

If your voluntary society can't put you in touch with other parents, try Contact a Family which started primarily to link parents together. Your health visitor or social worker may also be able to arrange local contacts for you. Ask them if there is a local toy library, opportunity playgroup or mother and toddler group for special needs children as any of these can provide an enjoyable place to meet other parents as well as providing company for your child.

Conflicting information

As you contact people, search the internet and read books, you may receive conflicting information from the different sources. Research is continuing all the time and you are learning about the frontiers of medical knowledge. Some of what you read will be opinion and theory rather than proven fact. Without different people having different ideas, no progress would be made for it is by testing these theories that knowledge grows and treatments improve.

Although that explains why opinions vary, it won't stop you worrying that your child is not receiving the best possible care. If you hear of a different treatment you would like to try, talk about it with the professionals working with your child. They may persuade you of their reasons for not using it or they may be willing to try it. If not, you can ask for a referral to a clinic that does use it.

Alternative medicine

Orthodox medicine doesn't have a monopoly on ideas for treating sick and disabled children. You may come across some which involve alternative (or complementary) medicine. Such ideas can sound very tempting, especially if ordinary doctors have little or nothing to offer.

You will usually have to pay for alternative medicine. Most practitioners are responsible people but, as in most jobs, there are some who are not. Beware of any treatment which could be potentially harmful and of suggestions you should stop giving your child vital drugs. Remember the ultimate responsibility is yours - don't be talked into a treatment you are unsure about. You could ask your ordinary doctor's opinion as well.

If you want to try alternative medicine, look for a qualified practitioner who is registered with the governing body of his particular field. Ideally go to one recommended by someone who has been successfully treated for a similar problem.

And finally

Learning about your child's problems may seem a daunting task at first as professionals and other more experienced parents will use words you don't understand. I remember when Steve first went to a cystic fibrosis parents meeting, he came home amazed at the ease with which other parents used names for infections and drugs which he could hardly pronounce. Don't give up - like us, you'll get there in the end. Admit when you don't understand what people are saying and ask for an explanation. They won't laugh at you.

It's important you understand your child's condition as much as you can. You are the people who love and care for him. The professionals may come and go but you, hopefully, will be with him right through his childhood. The more you understand, the better you can help him.