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Just over 15 years ago, I gave birth to our gorgeous little son, Tom, who also happened to have Down's syndrome. The medical facts were explained to us by our consultant, in the delivery suite. She ended saying ‘put simply he is half of you and half of your husband, with a little bit extra!’ In other words, everything that we are able to do, Tom was likely to be able to do (within reason) but he would take longer to get there! For me, this was without doubt, one of the best things she said, as it gave us a positive vision and hope for Tom’s future which, we know, is not always everyone’s experience.

Our journey to date has been a wonderful mixture of fun, laughter and joy, along with the odd period of frustration! We have found the Ìý(DSA), has been a useful source of advice along the way. Due to developmental delay, we made the decision to hold Tom back a year before starting nursery/primary school, which also enabled us to get his statement completed.

Tom kayaking in 2006 - challenging people's perception

Tom thrived at his local primary school (an inclusive mainstream school), along with his two sisters. He was able to access the curriculum with the help of his learning support assistant but most of all, he benefited from a great peer group, many clubs and social opportunities.

For his secondary school we made the decision to go with a small state school specifically for children with moderate learning difficulties. This wasn’t as straightforward as we anticipated as the school we liked was ‘out of borough’. However after many discussions with our local education authority, the school was approved for Tom as the ‘best fit’ for the educational needs set out within his statement.

Without doubt, this was the right decision for Tom and he has continued to thrive and is always ready at the front door at school time - an indication that he loves it. A good place to find help as regards education is .Ìý

The greatest perceived difficulty so far has been the growing ‘social gap’ between Tom and his primary school peers. I was concerned about his teenage years being lonely and his self-esteem diminishing.Ìý

I had been aware for some time, that foundations throughout the UK. It seemed like this might be an opportunity for us to bridge the gap by way of inclusion through sport and we went to one or two sessions in South West London.

Then a year ago, I had a letter from the Down's Syndrome Association, inviting Tom to a new weekly tennis session, specifically for children with Down's Syndrome and their siblings. We went for the first time in January 2010 and have been going weekly ever since. It is a partnership between , the and the DSA and it has been invaluable, the benefits immeasurable. You can on the LTA site. This is the first project of its kind and there are hopes that this model might be replicated in other parts of the UK. Ìý Ìý

The tennis sessions have put a new structure in the week, provided a safe and encouraging environment which has bolstered Tom’s self-esteem. Tom’s ability to concentrate, listen and follow instruction has increased. The children are confident of their abilities but also at ease with their disability. Interestingly, I think it is because this initiative is specifically for children with Down's syndrome that the children are so positive, because they’re with others who have this too.

Additionally, as a parent, this has given me a network/friendship group – meeting with people who have similar life experiences and sharing ideas, concerns and information has been invaluable. It’s also provided a great new social group for the parents, children and young people with Down's syndrome and their siblings, helping to bridge the ‘social gap'. It has given everyone involved Ìýthe opportunity to build friendships, hopefully for life. Ìý

We have recently been very encouraged by William Loughnane’s storyÌý-Ìýwho knows what the future may hold for Tom too! The last 15 years have been a fascinating journey for me - a journey which I had not anticipated, but a journey which I would not want to change in any way.

Sue Prisk is a full-time mother and carer.

For more information on Down's Syndrome, look at this

Check out ³ÉÈË¿ìÊÖ Ouch!Ìý

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