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4 people with hidden impairments


Is there something wrong?
by Jill Curtis


All parents know the fear which grips them at their baby's first sneeze or snuffle, but after a while even new mums and dads begin to relax and get on with everyday family life.

However, although parents may find it hard to remember just when the thought crept into their mind, the anxiety that maybe there is something not quite right with their child began to make itself felt. For some mothers this can be very early on after the birth, while for others these thoughts may only begin to creep in after months, or even years.

Mothers, especially first-time ones, find it hard to know when to ask for help. If they do, they may be told to ‘stop making a fuss' ‘you are an overanxious mother/father' or ‘wait and see.' These comments were frequently reported to me by parents who felt uneasy about some aspect of their child's behaviour or development. Grandparents can be guilty too of quickly ‘reassuring' a parent that all is well. These remarks sometimes have the effect of making a parent think that ‘whatever it is must be my fault as a parent then.' And whilst blaming themselves, are left wondering whether there is something to worry about or not.

So what are ‘invisible' disabilities? The thing about hidden disabilities is that they are not immediately apparent to the casual observer. A child may be affected with a disability, but not look disabled, and this can be both an advantage and a disadvantage. The symptoms of some disorders are often highly visible to a parent, although not always understood, and the symptoms can fall into more than one category which may confuse even the professionals. First of all, do keep in mind that for each condition there is a wide band of symptoms, varying from mild to severe. Remember, too, that arguments still rage over whether some of these conditions do constitute a disability at all. It may take a while to get a clear picture, since children can change very dramatically in the early years.

You may have heard of ADHD (Attention Deficit Hyperactivity Disorder), Autistic Spectrum Disorder, Asperger Syndrome, Attention Deficit Disorder, Auditory Attention Problem, Pathological Demand Avoidance Syndrome, Dyspraxia, Dyslexia, Learning Difficulties, Depression, ME (or Chronic Fatigue Syndrome) and Tourette Syndrome. Don't be scared by this list. Remember that a diagnosis for any of these conditions requires a sensitive and experienced specialist or clinician who will observe a child very carefully, and then follow internationally recognised criteria for a diagnosis.

Remember, too, that every child is unique, so you need to keep a flexible mind when watching your child, even though the signs which are worrying you now were not there at birth. Don't forget for one moment that although your child may show some signs of difficulty in one or more areas it may not point to a full-blown disability. We must make room in this busy overachieving world for children who are dreamers, or who do not fit into the neat compartment mapped out for them!

Parents asked me ‘How do we know if my child has a problem - he is very clumsy?' or ‘my son's behaviour is so out of order that we can't take him anywhere. Could he have ADHD?' or ‘I have to tell my child everything three times. She never listens. What is wrong? Is it a disorder?' These are parents who are at a loss about the best way to help their child. These parents had also been on the receiving end of ‘advice' from friends and even the man-in-the-street.

The major decision may be whether or not to ask for help. The important guideline here is: when a parent thinks it is necessary. A GP, Health Visitor, nursery carers, and teachers are often the first port of call, and parents often reported a fast and helpful referral to a professional qualified to investigate further. ‘We got help with the speed of light,' said Sally. Sadly, this was not always the case, and there are many bewildered parents who are left wondering where to go for help next. What do you do if you are told ‘Boys will be boys' when you know that your son's erratic behaviour is more than that? Or even ‘Your child has ADHD' but are not given any guidelines about what to do next about his behaviour? Some parents who notice signs of ADHD, ADD or another ‘invisible' disability in themselves or their partner, are often very reluctant to seek help as they fear a critical finger may be pointed at them. Barry told me ‘We asked for help with our boy, and all we got back was ‘what do you expect with your family history'?'

Take note that some professionals are reluctant to jump too soon to a conclusion, as a quick diagnosis may mean a child gets labelled incorrectly. But a firm diagnosis often removes the anxiety and uncertainty for parents, and it may be easier to explain the situation more clearly to other people. However it can take a while to get a clear picture, since children can change very dramatically in the early years. Ben was diagnosed as having ADD other parents where more sympathetic and asked if they could help me' said Pauline.

But there is also heartache when it is confirmed that a child does have a disability.

Almost all the parents who spoke to me when I was researching for my book Does Your Child Have a Hidden Disability? said that anyone who needs to find help for their child must be prepared to be tough and forceful. The irony is that there are often times when a full-blown disability brings with it more help and support than for those on the mild end of a disorder. Your child's disability may not appear mild to you as you see how he is battling, but because others assess his condition as mild, he may be left struggling to keep afloat.

The cry is ‘fight, fight and fight again' to get the best for your child. You should always keep in mind that you know your child better than any ‘expert,' so if you are uneasy about any aspect of your child's development or behaviour, you must speak out. If you don't make a fuss, nobody else will.

Remember that although your child may not perform in the standard tests as well as you would like, a child's school experience by no means always determines his future success. At the end of the day make room for your child to blossom in his or her own way. If there is a disability - and there may well not be - let the light from your child as he is be allowed to shine through.

© 2003 jill curtis

Jill Curtis writes articles and book on family issues and hosts her own family website;

The book
Does Your Child Have a Hidden Disability?
Costs £7.99 and is available either through Amazon.co.uk or in most bookshops.
The ISBN is 0 340 78679 5.


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