13 Years ago, my daughter Tara was born with WAGR Syndrome, a rare chromosomal abnormality. Having had a normal pregnancy, I'd had no warning that my beautiful daughter, my second child, would arrive with this 'de novo' (not inherited) random genetic fault which was to rock my world. But it has also made me stronger and wiser and I feel privileged to have been taught these life lessons....
1. You truly are stronger than you think. Parenting is hard. You can't even imagine how difficult it is, until it slaps you around the face with an onslaught of sleepless nights and then you begin to learn. But being a special needs mum is something else; it stretches you to the very boundaries of your being. I didn't know if i could do it but you truly do not know how strong you are until being strong is the only choice you have.
2. Having a child with special needs means inevitably that you will need to grieve for the 'healthy' child that you were expecting. This period of grief happens to people at different stages. And the grieving often reappears as you see other neuro-typical children reaching milestones and achieving things that you know your child will never attain. Even now, 11 years on, I feel pangs of grief when other children around me do things that Tara will never be able to, it's only natural. In the early days, it took me months to grieve, I remember that even when I had come to accept this new normal, I felt a deep, prolonged feeling of sadness. It's OK to be sad. You don't have to be positive all the time. It's healthy and human to experience the 'negative' emotions such as anger or sadness. You have a right to process these feelings.
3. You must learn to accept the things you cannot change. Good health is priceless. Some conditions cannot be rectified and are simply beyond healing and the realms of modern medicine and science. But you can progress to accept them and manage them and focus on the positive aspects of your child's abilities and character. Tara's disabilities from WAGR Syndrome are numerous: visual, hearing, learning, medical, to name a few. But she is also a cheerful, funny, chatty, musical girl who has a positive influence on the people she meets. And she makes me proud.
4. Take one day at a time. In the special needs world, there are so many things to be anxious about. It's prudent to make plans for the future, but looking any further than the near future too often is a recipe for distress. And worrying about what might never happen is also unnecessarily draining. My daughter was always at risk of Wilms Tumour (childhood kidney cancer) so she was scanned for it every 3 months from 7 months old. 'Scanxiety' (fear and anxiety about upcoming scan results) was a common occurrence for quite some time. By the time, she was diagnosed with the cancer at 4 years old, we had trained ourselves to stop letting 'scanxiety' rob us of precious joy. The diagnosis would have been a shock either way. But it was detected early and hopefully cured. So live in the moment and find the good in every day.
5. She who shouts loudest, triumphs. There is nothing like the strength of a SEND parent. To be a true advocate for your child you need to be proactive and politely pushy. Everything is short-staffed and under-funded and the law will not automatically protect you. We have had many battles on our hands; fighting for a school place, an adequate EHCP plan, DLA, respite or the credence of doctors. So ask the professionals to show-up or write that report; urge the doctors to investigate further and know the law and compel services to adhere to it. If you don't ask you may get pushed aside.
Have you read the poem Welcome to Holland? It's a prominent piece, written in 1987 by American author and social activist Emily Perl Kingsley, about having a child with a disability and is well known by special needs parents across the world.
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