James’s Story,by his mum, Claire
In 1999, 32 weeks pregnant with my first child, I went for my final scan. My baby was in foetal distress and I was rushed into hospital to be pumped full of steroids. The following day they repeated the tests and decided baby could not wait.
My son was born that evening by emergency caesarean. This purple bundle was briefly placed on my shoulder before being whisked away to SCBU (Special Care Baby Unit), and I was given a Polaroid picture to bond with. I did not see him for another 24hrs! But that’s a whole other story. He was tiny, weighing just 1.245kg, less than a bag of sugar, and measuring 40cm long. But he was a fighter and he was precious to us.
A week later, my husband and I arrived at the hospital to visit our son. We were invited into a private room. My ‘somethings up’ sensor went off madly! Sure enough the consultant had something he wanted to tell us. Our precious little bundle had Down Syndrome! It was a shock. We didn’t know anything about Down Syndrome and we didn’t know what to feel or how to behave.
We told our parents and closest friends then went home and cried. A couple of days later, all cried out, we stood tall and said ‘he’s still our son and we love him’. We later realised that we had mourned the child we were expecting, to accept the child we had. Perhaps at this point I should say that we had refused all the pre tests, mainly because I hate needles and was not having them take a blood test to give me a percentage risk of abnormalities as there was no way I would have had an amniocentesis, ‘tell me when my baby is born’ I told them, so they did.
James, or JJ to his friends, spent 8 weeks in SCBU. The nurses there were fab and taught me all they could. It was a scary time, he was so tiny and precious. He caught a cold so spent most of those 8 weeks in an incubator struggling to breathe. But finally he was sent home, complete with an apnoea monitor … and that was a whole new level of scary.
When it came to feeding, JJ struggled, and on the advice of my Health Visitor I started to wean him at 5 months old. We were still trying to get him to eat solid food at 10 years old, all he wanted was milk and yoghurts. For a long time we thought he had a swallowing problem. However now, he’ll scoff a huge plateful of Christmas dinner, even coming back for 2nds and 3rds.At 16 I finally managed to get him an Autistic Spectrum Disorder diagnosis. It had been a struggle, but I had great support from my friends, and we now know that it isn’t his Down Syndrome that defines him, it is his Autism.
JJ is now 22 and an amazing young man that I am immensely proud of (I tell him so often). He is polite, caring, & considerate. He tries hard to be helpful, and although he can still get it wrong sometimes, he tries and that’s what counts (I tell him that a lot too).From a little boy who couldn’t/wouldn’t walk, JJ has become a fitness and sport fanatic.
With his Pacemaker and his hearing aids he is pretty unstoppable, and is currently working towards having a 6 pack. His favourite sport is football but he loves all sport. Each week, he currently plays football, hockey, tennis, & cricket. He also attends the gym twice a week. Football is his main love. He plays for 2 DSActive teams – Lincoln City and Burton Joyce.
He loves nothing better than attending matches and tournaments. He has even been part of the Special Olympic East Midlands Football Team, and has attend the 2017 National Games and 2018 Anniversary Games. JJ’s passion for football started back in early 2013 when the Lincoln City Foundation started their DSActive team (DSActive is coordinated by the Down Syndrome Association to get children and adults with Down Syndrome active).
JJ could barely kick a ball but was eager to try. In June 2013, 5 players attended the DSActive National Festival and had to play as the All-stars as they didn’t have a full team, along with 2 players from North London. Now the squad are amongst the top DSActive teams at the National games. In 2015 Burton Joyce FC, a grassroots football club, started their DS Active Team and JJ loves his time with them too. What I find amazing is that both teams still have the same players they started with and watching their development has been inspiring.
JJ loves to play both in goal and upfront. He’s as good at scoring a goal as he is at saving one. I am in awe of the skills he has developed through sport. Everything from sportsmanship to reading the game. He studies training videos on YouTube as often as he can.
Life with JJ has been hard work, I have shed a lot of tears over the years, and often wanted to give up. But it was worth every moment and when I look back over the years I wonder how we coped. But with consistency and perseverance we got through it and the result is an awesome young adult. I am now looking forward to the next phase in his life, developing into an independent adult. JJ has huge aspirations and I will do all I can can to help him achieve them.