In the weeks since the BBC documentary A World Without Down’s Syndrome? there has been a great deal of discussion around the subject. As with any good debate there have been many opinions shared, however there was one comment I read after an article in one of the leading online news sites that particularly upset me. It upset me because it was uneducated nonsense that someone at a vulnerable time may well read and believe. They were making fleeting statements as if representing 100% of families living with Down’s syndrome in their lives. Implying that all siblings of children with DS suffer and are burdened by it somehow.I’d like to share with you here a letter that my 13 year old son Harry wrote a couple of weeks ago. The school he attends had asked them to write a ‘thank you’ letter to someone, literally anyone, it could even be to someone they don’t know personally like a sports person / musician etc. Harry chose to write his letter to Rosie – A letter which I think goes a fair way to explaining how he feels about his sister and her ‘disability’, a viewpoint that is real, un-prompted and a voice of experience not one of an outsiders assumption.Dear Rosie,I would like to say thank you to you because you have taught me how to be a more understanding, well-rounded person. When you were born, despite how proud I was, I hate to admit that I was nervous, mainly because I did not understand the learning disability you have – Down’s syndrome. You have taught me that having a learning disability is nothing to worry about and I also now see everybody as loving human beings no matter what learning disability or physical disability they may or may not have. I would also like to thank you for understanding me. Although you may not be able to communicate through fluent English with me, I really appreciate smiling with me when I’m happy and comforting me when I’m sad. As well as that, pictures, videos and the presence of you make a lot of people happy. So, thank you from myself and a lot of other people.Harry Yes it’s true and natural that as parents we will worry about our siblings and whether or not they will feel burdened by having a brother or sister with a disability, however nobody can tell you their reality like a sibling themselves. I’m under no illusion that this letter represents every child who has a brother or sister with a disability but it certainly illustrates that they don’t all suffer and don’t all feel a negative impact.I’m extremely proud of Harry for writing such a heartfelt note and the fact it comes straight from the heart with no agenda other than to thank his sister for being who she is.
The Future's Rosie
I'm Tom, a thirty something father to three beautiful children and husband to my soulmate Karen. I started this blog as a means to talk about stuff, get things out in the open, a bit like an online therapy I guess and to celebrate the progress of my beautiful daughter Rosie who was born in March 2011 with Down's Syndrome (DS) and a Complete Atrioventricular Septal Defect (AVSD). Maybe the experiences shared on here will help others too, hopefully help illustrate the bright futures our children with DS will have if we can break down common misconceptions. When I first found out Rosie would be born with DS I found reading literature with open and honest feelings on the subject, extremely helpful. This is not intended to be a written masterpiece and I can promise you it won’t be. I don’t pretend to have a large vocabulary and to be honest the further behind me my school days become the more my grammar has deteriorated!... however, you will find what is written on these pages comes from the heart.
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