'Wooooahhhh there, stop growing up' I keep saying to Kyd as he does more and more independently but really, this is what the last 12 years of hard graft have been building up to. This is what he needs to be doing to build up to real life and this whole growing up thing is 12 years in the making.
Sometimes in life you take a chance and walk through the door at the end of a route you wouldn’t usually take. When it closes behind you, you realise it’s leading you to a place that you weren’t expecting, one that you’d never even dreamed of before…. a place in which, once there, your life will never be the same again.
Sometimes I hear things in passing that I think 'actually you're wrong' but I feel like I can't correct it and find myself biting my lip to be polite because they 'mean well'...
This is mainly through misconceptions and ignorance (not nasty ignorance just general ignorance) and so until someone does say 'WELL ACTUALLY...' they will never learn and this will go round in circles.
When Kyd was diagnosed with Down Syndrome at only 24hrs old, I was thrown in to a completely different world, one full of hospital appointments and health scares, statements and DLA forms. One which the ups and downs (no pun intended) would make myself, and Kyd, into the people we are today.
When Kyd was in hospital he missed a whopper of a football game a 7-1 win for Reading at home to Bolton. Kyd has had a season ticket for 7 years now and he has NEVER seen a game like that. He has seen 6 goals and begged for 7 but he's never seen a game where he's been chanting 'We want 8, We want 8'. Alas due to having surgery on the Thursday he could not attend this game and he felt cheated, like he'd hit the beans on toast in a 0-0 tie against Man Utd at the 90th minute... cheated.
Yesterday, as I walked into the children's clinic, as I've done so many times before, I suddenly had an overwhelming feeling of emotion. I can't quite pin point that emotion, it was both happy and sad and as tears filled my eyes, I felt this huge smile growing upon my face.
I took Kyd to the John Radcliffe Hospital in Oxford this week for a long awaited appointment.
Only a week after his 11th birthday, Kyd has been told he's due to have surgery on his bowel in a couple of months time. He's having an ACE tube fitted. It is quite a complicated operation but it will stop the pain he has daily because of his lazy bowel and constipation. Eventually the bowel may heal itself and he can have a normal, healthy, active adulthood... HURRAH... it may not though and he may end up with a bag for life... and that isn't a shopping one.
Learning disabilities come in all shapes and sizes and some aren't seen as 'serious' or 'real' in some people's eyes, which is a real shame in this day and age.... this week celebrates all of the people who deal or cope with, teach, diagnose, help and understand all the different types of learning disabilities, whether it be helping a child/adult with them or showing faith and confidence in yourself to achieve all that you can whilst having them... you are all superheroes to me.
Contrary to popular belief, not all parents of children who have Down Syndrome are Anti Testing during pregnancy. Although some are, others see things in a different way but we seem to not shout quite as loud as the others and I can't work out why?
Do not underestimate my child’s understanding of right and wrong!
Over the past 10 years I have read up on, listened to and watched others, to find the best way to bring up Kyd as a child with Down Syndrome but also as a child in general. What I have learnt is that actually there is no difference just a few extra hurdles for those with disabilities.