My Kid’s Got More Chromosomes Than Your Kid

Last year I wrote about what it was like to be pregnant with a baby with Down’s Syndrome, and as World Down’s Syndrome Day is upon us again and we are lining up #lotsofsocks, I thought I’d write another… This time I know more about what it’s like to be the parent of Elliott. My little hero, mischief maker, food thrower, cat teaser, cheeky giggler and rubbish sleeper.

A year and a half on… I’m writing this under a poncho in the snow. The ladies from Singing Hands are bouncing around on the TV being kangaroos in an attempt to entertain the little lad whilst I write. Soon it will be time for macaroni cheese and Baby Jake (does anyone else find it quite creepy? I remember a time where I didn’t know what a hamsternaut was) and then I’ll try to convince him that he can’t just live on hula hoops and watermelon.

He’s 20 months now. He charms people on the bus . He isn’t mobile, doesn’t have any words (yet), still he has an awful lot to say. He is developing much slower than typical kids, which is what we expected. He really works hard for every milestone – and he gets there, and we are so proud when he does. It is easier than I expected to be zen about him being so behind because he is such sweet little chap who is (mostly!) so full of joy regardless of where he’s at and, it gives you time to celebrate every achievement.

We go to a lot of therapies and classes. Early intervention is key to helping our little ones reach their full potential and we’ve been absolutely looked after since he was born. The SALT team from the Evelina are now working more on his communication than his eating, physio are confident that he is getting stronger and stronger even though his muscle tone is so low and everyone seems pleased with his progress. We go to Down’s South sessions on a Tuesday morning which are great; speech, OT and physio all rolled into one. Speech sessions are in the afternoon and on Thursdays we have Portage or either a Sensory Session at the local childrens’ centre or the hand clinic at the hospital. He’s very popular amongst the occupational therapists there so they all get a cuddle. That’s one of the sessions he enjoys the most. On a Friday, he goes to a music class – this time with typically developing kids. He’s just been promoted into the toddler group and absolutely loves it. I’m hoping that we are fostering a life long love of music rather than a life long love of bashing things and making as much noise as possible.

It is a lot of work keeping on top of all his appointments and therapy sessions and then keeping up with his ‘homework’. We have got into a routine with it all and, thinking back to when he was a tiny baby and had a couple of appointments every day, it has eased off.

We’ve both gone back to work, Justin designing computer games and me working on conferences and events. It’s hard, and at the same time I’m really enjoying it. I was getting to the stage where I was going a bit cross-eyed at repeats of Mr. Tumble and it is really nice to not be “the mother of child with a disability” to the exclusion of all else.

Finding childminders and nurseries that aren’t fazed by his condition and can support him has been a challenge. Some of them discounted him before they met him, some of them gave us the run around, and one just ‘vanished’ on us after a week. That turned out to be the right thing though and we have a brilliant childminder who is very much part of the family and adores him and is happy to work with his team. In September, he’ll start doing a couple of afternoons at nursery so, at the moment, we are working with Southwark to get his EHCP in place. There is still a lot of paperwork, but I’m understanding more and more what they look for and what’s important and what isn’t.

We’ve had support from Home Start. We’ve been on an amazing holiday to Cornwall in a hotel that was perfectly geared towards families.  We’re learning Makaton. We’re learning to cope with no sleep – we are still working on ‘sleeping through’ but with his sleep apnoea I don’t think that’s on the cards for a bit. I’m learning that although socks are tasty, sometimes it’s ok to make my kid eat actual food. I’m learning that my instinct is usually right. I’m learning that sometimes ‘winging it’ is often the best way, rum and swearing are acceptable in some parenting situations and that taking the scenic route can actually be quite fun.

One of the things that I wasn’t prepared for is being part of this great worldwide community.  Every milestone is shared and every time one of our little ones gains their wings, we all feel it. I’ve met some incredible kids and parents. We are accepted in our world and not judged; we are out of the rat race of milestones and Elliott has the freedom to be whatever he will.

I’ve got the #luckyfew tattoo, because as tribes go, we really are.

 

World Down’s Syndrome Day – https://worlddownsyndromeday.org                                            

Down’s South London – www.downssouthlondon.org

Home Start Southwark – www.homestartsouthwark.org.uk

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