Discovering that your child has A-T is bound to come as a huge shock and for a time it is natural to feel devastated. It is also normal to feel angry, stunned, numb or in shock and to question why and how such a thing could happen to your beautiful child. As parents you may experience feelings of guilt, imagining that it is your fault and you are to blame, BUT YOU ARE NOT AND NEITHER IS YOUR PARTNER. You may also feel extremely anxious and fearful, wondering what the future will hold for your child and the rest of the family. Some days will seem worse than others and there will be times when you may feel at the end of your tether and unable to cope with all these feelings.
For some parents however the diagnosis can come as a relief because at long last they have a name for what is wrong with their child. Many parents know something is wrong but health professionals, trying to be reassuring, may dismiss their worries as being those of over-anxious parents.
Having the diagnosis does have other positive effects. For instance, applying for benefits e.g. mobility and care components of the Disability Care Allowance becomes reasonably straightforward. The diagnosis should ensure that your child has access to physiotherapy, occupational therapy, speech therapy, monitoring by an immunologist, paediatric neurologist, and possibly an orthopaedic specialist etc. This in turn will lead to improved health care, better prognosis and a higher quality of life for your child. The diagnosis should also mean that your child’s special needs at school will be recognised and hopefully met through the statementing process. Again this will work to the benefit of your child. There is a growing body of knowledge about A-T and its management that you as parents and the professionals involved in the care and education of your child, can tap into. The A-T National Clinic based at Nottingham City Hospital is one of these sources. Dr Susan Ritchie is available to talk to both families and health care professionals. The Society is another source of information.
The A-T Society is made up of other families – parents, siblings, grandparents, uncles and aunts – all of whom know the pain and tragedy of discovering their precious child / relative has A-T. More importantly however, they know that it is possible to come to terms with it and learn to lead happy and fulfilling family lives. Bringing up a child with A-T is undoubtedly hard work, but it is just as rewarding as raising other children. There may be more bridges to cross, more hurdles to overcome and you will certainly need to change the "goalposts" for what you hoped your child would achieve but the satisfaction, fulfilment and sense of pride and joy you feel when your child does achieve is enormous.
Living with A-T is not a prison sentence, as some might imagine. There are certain things that people with A-T will never be able to do; but with love, encouragement and support you will soon realise that a world of opportunity does exists for those with A-T and that their lives can be happy and fulfilling.
Stories of the lives of some of the family members with A-T are described on the "Living with A-T" page.
Whether you need to share your pain and anxieties with a trained counsellor, need information about financial support to buy essential equipment for your child, or just want to meet other families who understand and relate to your experiences, please do not forget that the A-T Society is there to support you and your family.
The Society’s telephone number is +44 (0)1582 760733. Please use this number if you wish to be put in contact with our counsellor Helen Hart or the A-T National Clinic.
| Ataxia-Telangiectasia
Society IACR-Rothamsted Harpenden Herts. AL5 2JQ United Kingdom |
Tel:
+44 (0)1582 - 760733 Registered Charity No. 1105528 |
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After
Diagnosis |