Life with an adult with Down’s Syndrome March 2023

Life with an adult with Down’s Syndrome

 

 

First of all there is no “usual”, “normal” or “average” with DS. I have met some very high functioning people and very low functioning people. I was asked years ago by a meditation expert – he said “meditation, it’d be brilliant for people with DS wouldn’t it?”. My response was “well, some yes, but not all – people with DS are not all the same, just like people without DS!”

 

I think I burst his bubble, but I wasn’t there to appease him, so I gave him an honest answer, and to be frank, I was a little insulted by his naivety. 

 

My son has just turned 31, he is happy and healthy, a little overweight but we are working on this. He will STILL eat until he throws up! He loves food and coca cola, chocolate, and ice-cream, basically anything sweet and has no natural stop point. 

He is quite content to eat all the food, drink loads of coke, eat pudding then wander off to the bathroom, throw up and carry on as if nothing has happened. We’re not impressed, but we have to be on our guard to prevent it and yes, sometimes we feel mean – crazy eh?!

 

He doesn’t speak, hardly at all, he does his version of singing which often sounds like he is being murdered, but he is very content. 

He LOVES shows; Les Misérables, Joseph and his Technicolor dream coat, Phantom of the Opera, Wicked and will watch show after show on You tube, doing his version of singing along to them. He copy writes, pages and pages and pages.

We have tried to teach him sign language, my wife and I learnt BSL many years ago and then there’s the cutdown version Makaton – but Jake can’t really be bothered with all that, he’ll use it when he really needs to. 

 

He works during the day. My wife and I setup a business around him which is now a good-sized service, helping adults with learning difficulties learn and grow and ultimately get jobs in industry. The last part is not easy, and I understand why, getting good employees is not easy and we all want a good job done reliably and to our standard. However, my son did work at The Premier Inn alongside a Personal Assistant which we trained, and he was there for 5 years. But then covid, plus a few other external issues meant it was better for all if he resigned. The Premier Inn has exacting standards, and everything must to done just right, the lamp must be in the right spot on the bedside cabinet, the shower cleaned and setup the same in every room, etc, etc and Jacob did the vast majority of this with appropriate help from his PA as and when required.  

 

This is not an advert for Forever Savvy, but it’s important to be aware of the possibilities, check out www.foreversavvy.co.uk to see what we do and what therefore, can be done. 

Monday to Friday he works 10am-2:30pm either at our Café in Bagworth (it’s not “our” café but we do run it during these hours), Creative Savvy also in Bagworth on rented land or Horse Savvy in Broughton Astley where he and his colleagues look after the 4 horses, 2 rabbits and 6 chickens. He thoroughly enjoys his work, having lunch with his colleagues and the staff, collecting horse manure in wheelbarrows and tipping it into the poo pile. 

Or making wood crafting projects at Creative Savvy often from donated pallets.

Or cooking at the café and serving the dog walkers and other visitors. 

 

Then, in the evening he comes home and gets on his laptop to watch whatever takes his fancy, he’s into “Death in Paradise” at the moment, but tomorrow if might be “Fireman Sam” or “Phantom of the Opera” again! 

He is fastidiously clean, showers every day after work, and always loves to smell clean and fresh, he does all of this unsupervised and without any prompting – cleaning his teeth however does need some encouragement, but the last dentist visit they were very impressed – the electric toothbrush definitely helps.
He sleeps through the night with no trouble, NEVER wets the bed so is a breeze. 

 

Jacob is a joy to take on holiday, happy to drop into whatever we have planned that day or just meander if we have nothing planned. 

 

He has changed the life we expected, but ultimately, we have achieved more because of him, we had a need a “why” and that keeps us both focused every day.