Down Syndrome – early years
We have been working with a number of families with children with Down Syndrome for years and I have to applaud all the families do. There is one family, one mum and one child who I really do want to recognise – I won’t name them but they know who they are and that’s enough for me.
This weekend, in the 23 August 2009 You Magazine there was an inspirational article by Sarah Stacey about down syndrome. In the film Notes on a scandal, Cate Blanchett’s young son, Ben Hart, was played by Max Lewis who has Down Syndrome in real life. Director Richard Eyre described him as ‘ a remarkable ….. a gifted actor’ and paid tribute to his parents ‘unquenchable faith which has given him the confidence to realise his remarkable self’.
I’ve seen this same thing in two situations. One with a young woman called Michelle (now must be at least 21 years) and one with Clara (now 12 years old tbc). Michelle is now a self assured confident young woman who sings in front of thousands and is now a patient advocate in the USA. Clara is much younger but already is developing into a well rounded young woman and given the love and care that here family have for her I have every confidence in her. In both these cases, when I met them and their parents, I recognised an irresistible force which permeated everything they did and said. It’s not ambition in the normal sense but much more of a refusal to believe that their child can’t live life to the maximum potential.
They seem to have an unshakable love for their children that is beyond words. You can’t help be see it however when you meet them.
In the book about this story entitled ‘Living With Max‘ there are several key things that come out and here are just the top few:
- don’t let the trauma of having a child with own syndrome rob you of those early years. Enjoy your child and love them – play with them treat them as you would do any child. Once those years have gone they are gone forever.
- People still are poorly educated about Down Syndrome and very often you’ll run into odd situations where people’s responses are pretty awful. Don’t let their responses guide you. Trust your own judgement and try not to let the hurt get to you. For one bad experience there might well be 10 great ones.
- Try to connect with other families and in particular mum’s with children with down syndrome. Meet with them for coffee, meet socially, meet at play groups, meet in the parks, meet at dance classes – meet anywhere and any way you can. Draw strength from each other and give your support to each other.
- Be realistic but don’t limit your child. There are lots of people out there who would put you down for giving your child the best food, the best vitamins and minerals, the best nutritional care and the best complimentary health care. They, like you, deserve the best but there are some predatory types out there that are trying to make a fortune out of outrageous alternative and complimentary health treatments
that in reality do very little. Find out from a mum what worked for her child and then learn from them. For example aloe vera juice, vitamins and minerals and more recently some functional carbohydrates have been found to be beneficial. Add those to good organic home produced food and you’re well on the way to getting it right. Probably the best person to talk about this aspect is Clara’s mum Hazel. Also get hold of Clara’s story from Hazel’s blog - Don’t forget the rest of the family, your older children and your husband are still there and need to be given time. Make a date to spend an evening with your husband every week – it need not be expensive but just make time for each other.
- foster an environment where your children enjoy being together and that includes your child with Down Syndrome.
