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World Down’s Syndrome Day: Reflecting on 2020

To mark World Down’s Syndrome Day and hear an interesting perspective, we asked Stuart Davies, General Manager at one of Pobl’s residential care homes to share some of his thoughts…

Stuart has been writing a blog since 2014, when his partner, Alex, was pregnant with their daughter, Meredith. Stuart and Alex had found out that Meredith has Down’s Syndrome and he has documented his thoughts, feelings and experiences prior to and since her birth.

Given the current situation, the past year has been very different for Stuart and his family. As a care home manager, Stuart has been working around the clock to keep his teams and the individuals they support safe. And as a father of a child with Down’s Syndrome, he has also had to navigate massive changes in his family life.

Here are some extracts from his personal blog, which we thought would be worth highlighting on World Down’s Syndrome Day…

“The last 12 months has brought us many challenges, as with most individuals and families. Meredith has had a lot of changes over the last year, a lot to comprehend.

That in itself being a challenge, to fully know what her level of understanding of what’s been happening is.

Why did school close? Why have I gone to 3 different school hubs without some of my friends? Why can’t I see Mamgu, or Nanny & Grandad as much.”

"I was afraid that if she was away from school and friends for a lengthy period of time that her communication would suffer, risking her falling behind everyone else and highlighting that that she’s different. Questioning whether this would create a barrier and her attending a mainstream welsh medium school would still be the right place for her. Also the added worry that her friends may move on and no longer be there for her. The longer she was away the larger those concerns grew for me."

“Then in the New Year this fear almost came very true as we received a letter for Meredith to shield. This was a bolt out of the blue as we didn’t receive one first time round. Nothing makes you feel more vulnerable than having the vulnerability of your child highlighted to you in a letter…”

“Now as a care home manager for older people I have worked under the constraints, pressures and challenges that Covid-19 has thrown up for over a year now.

I understand the seriousness of the virus and I’m aware of the associated short & long term health complications, not to mention risk of death.

I manage a home for the most vulnerable people to the virus, I have had staff shielding from the virus, my mum is also shielding, and I know people who have sadly passed away to it.”

“But receiving that letter stopped me in my tracks and brought all the emotions to the fore. The fear of the virus on her wellbeing being balanced against the worry of being away from school for extended period of time, and the very negative effects that could bring. We think that health should always come first, but sometimes it just isn’t that black and white."

“After a bit of a panic, some initial conversation with the school and planned risks assessments to keep her there, we were informed the letter was sent out in error. The letters were intended for adults with Down’s Syndrome but not children. A big relief, but the concerns remain there.”

“Thankfully Meredith has coped well with the in and out of school, the three different hubs, the strange new faces. This is mostly down to the continuity of her dedicated support assistant at school.

It provided Meredith with a friendly face and a level of stability. In fact, the whole school have been great with Meredith, and they always have been.

Makes our life as parents a little easier.”

“We’re not the only ones going through this I know, it’s been a heck of a year for most, with everyone facing their own set of unique challenges.

How Meredith has coped with all this is quite unbelievable, she’s showing to be such a resilient little girl, one that both Alex and I are very proud of, even when she’s being a right royal pain!

It would be wrong to say that the last 12 months have all been sad times. Meredith is a happy little girl and her love for being outside, music, reading and drawing all remain.”

"This World Down’s Syndrome day we do still have a lot to be thankful for, Meredith is physically well and at this time she doesn’t have the usual health conditions associated with Down’s Syndrome. "

“Her communication is getting better and better, she’s doing well in school, reading and writing are improving; toileting & listening first time? Well, we’ll get there one day I’m sure!”

Huge thanks to Stuart and his family for allowing us to share this story on World Down’s Syndrome Day. If you’d like to read more of his blogs, you can find them here.