Case study: a parent support group

14th November 2003 at 00:00
My son has ADHD, but he went undiagnosed until he was 12. We had problems throughout his childhood; as a toddler his tantrums seemed worse than other children's (including his elder brother at that age). He would destroy household objects, set fire to carpets, swallow batteries and, by the time he was 12, he'd been excluded from school for holding a knife to another pupil's throat. He seemed to have no concept of the harm he could cause himself or others, and no way to stop from acting on impulses. We repeatedly tried to get help, from our GP and from the school, but for years we were told all of his problems were caused by other factors. For instance, I was told I had postnatal depression, that I was over-reacting to my own past (I was adopted) - and once that it was some indirect cause of my husband having gone to boarding school from a young age.

But after moving house and moving school, we finally saw a specialist who realised my son had ADHD. Unfortunately, by then he had been permanently excluded (even from the special needs school he'd been attending). We had to fight to get him back into education. Receiving the diagnosis and starting medication altered a lot for him; he was able to focus and concentrate for the first time, and therefore begin to learn. The other forms of therapy we tried (including behaviour management skills and education counselling) started to help too. Quality of life improved dramatically for us all.

He is now in college and doing well. He is still very naive and is easily led into situations, so still has a lot of social skills to learn, but with the medication and behavioural therapies he is doing much better.

To help others in a similar situation, my husband and I set up a group called Thanet ADDers. We provide information and support to parents, and campaign for improved identification and support for people with ADHD. My husband also produces freeware computer programs, which have all been made with children with special needs in mind.

Schools need to show patience, tolerance and understanding. It is essential to gain the child's trust and confidence. Praise the smallest things he or she gets right. Maintain eye contact when giving instructions, get the child to repeat things back to make sure they are understood and leave a list of things to do in a prominent place so the child can easily refer back. Have a simple code to help the child get back on task - such as a pull on your ear or a tap on the shoulder so that only the child knows and does not feel always singled out. Try to find out what the child really likes; it is amazing how many of the core subjects can be done using a theme and it will concentrate the child's focus. Allow any child who is always the last to finish exercises from books or the board to do all even number questions rather than the whole exercise.

But even when children have a diagnosis and treatment, support is often cut off once they become too old for paediatric services. Adult services need to be more accessible to these patients moving up from paediatrics - and to those who have fallen through the net and received no support in childhood.

ADHD does not go away. I know; I was diagnosed at 37. It must be acknowledged as a hereditary and life-long condition. Most importantly, we need to ensure that children can get a diagnosis without wasting years of their life being misunderstood.

For more information about ADDADHD and contact details for local support groups throughout the UK: www.adders.org. Tel: 01843 851145. Write to: 45 Vincent Close, Broadstairs, Kent CT10 2ND (please send a stamped addressed envelope).Caroline Hensby is founder of www.adders.org

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