Well hello

It’s me, not Ben, I changed the title of this blog for Ben, now I’ve finally managed to set up his own blog but I’m sticking with Downs my way for mine.

It’s been an interesting year, some difficult months but now we are back to living joyfully and abundantly. We’re blessed to have been supported by some amazing people, both friends and professionals. 

Ben is now happily back at his groups at  Down Syndrome Cheshire and has enjoyed some lovely days with his support worker  Sarah.. He’s had another exciting trip to London representing the National Down  Syndrome Policy Group in the company of the amazing Julie Duff.

His dream was to establish himself on social media platforms to advocate for people with Down  Syndrome of all ages. With my support and the technical expertise of the staff and volunteers at  Down  Syndrome Cheshire he now has a Facebook, Instagram and YouTube profile and his own blog. 

I am reminded that dark days don’t last for ever and good things can come out of hard times. We’ll both be trying to build a regular routine of sharing our adventures (and mishaps!) At the moment we are unable to share photos but all being well we will solve this problem (with help)

I’m testing fonts so if you find this one annoying or difficult to read just let me know. Baby steps!

 

 Testing estimate testing

Teamwork makes the dream work!

Test 2! I’ve changed the name of my blog but I’m not sure if it’s done the trick

Ben is Back

 Hello! It’s been a very long time but me and Mum have had a lot of problems trying to get me back on my blog. This is a little test to see if it works.☀

We can’t get pictures yet but Mum says we’ll keep trying if this first bit works.

Fingers crossed👍

Ben

Well, it's the second week in January 2025!, how has that happened? I seem to have had a sleep on Christmas Eve and woken up in January. Ben and I have had a lovely if quiet Christmas, we also had our usual in bed before midnight on New Year's Eve. Surprisingly we weren't kept awake by endless fireworks, something to be grateful for!

We actually haven't been out since last Saturday choosing to stay at home in the warm. what with torrential rain, gales, snow, sleet and ice (and every variable in between) we've chosen to enjoy reading, playing games journaling, crafting and binge watching some lovely box sets on TV. 

Shortly before Christmas we had new neighbours move into the apartment next door, we have already become good friends and have enjoyed several visits next door for coffee, cake and chats. Ben is really looking forward to his groups starting again at the DSC Hub in Northwich, this weeks session was cancelled because of the awful weather conditions.

 As you may have already deduced i have not much of great import to share in this blog, to be entirely honest I am trying to get to grips with my somewhat updated laptop and break through the barrier preventing me from putting words on a page. This year we chose not to make new year "revolutions" as Ben calls them, or set ridiculous and usually unattainable challenges. We felt led to a word to lead us through this year, "enJOY", we are going to consciously and intentionally look for the joy in the every day,  the mundane, the little daily miracles that we so often miss in the hustle and bustle of life. then we are going to enjoy them and put them in a JOY JAR..

Sunrises, sunsets, cloud formations the first buds bursting through, that first cup of coffee, an unexpected message from a friend, a delicious meal, the feel of clean sheets, a hot shower...so many "little" things that we can so easily take for granted. Let's face it, we are living in turbulent, worrying, frightening, even dangerous times, there seems to be a never ending cycle of bad news so lets, when we can, stop, take pause and hold tight to the little moments of beauty, love and hope.

My prayer is for us all to find shelter in the small moments, to find moments of peace and hope, and in these moments to find the strength to stand against the darkness that sometimes feels overwhelming 

 

Fun and friends

 

It’s another Monday morning, and another morning at the Down Syndrome Cheshire Hub in Northwich. Suffice it to say Ben starts counting down the days from the moment we leave for home. This place is definitely his happy place. 

This morning Ben and three of his friends have gone out for the morning with two of the amazing volunteers who work with them every week and a member of staff. Ben assures me they are working, going to the library, shopping for the ingredients for the meal they will be cooking for everyone next week and then stopping for a coffee (I did hear the word cake mentioned!)

In computer terms a hub is (and I quote) “a small rectangular, inexpensive device that joins multiple devices, its purpose is to form a single network whereby all devices can communicate directly with each other.”

The DSC HUb is this in human form, and so much more. First and foremost it is a place where anyone with Down Syndrome from new born to infinity can come and feel welcome, safe, valued, respected and loved. It is a place where friendships are forged and skills and abilities are recognised and encouraged.

It is also a centre of excellence in terms of being a place people can turn to for support, information, advice and understanding. There are regular sessions involving external agencies which people can attend about issues specific to and of interest to them whether it be speech and language therapy, educational provision or planning for the future.

For Ben and the many new friends he has made it is place where he has fun (with bells on) where he learns new skills and where he has opportunities to excel, (his gift of the gab has been noted! There is a huge variety of sessions and activities  which meet the interests of all ages and abilities and make it possible for families to enjoy activities together.

It is also a place where we can learn from our young people. The encouragement and appreciation they show to one another is humbling, they never miss an opportunity to praise one another for any achievement and are genuinely delighted in one another’s successes, talents and victories.

We are so very fortunate to have this amazing charity in our midst, they are a shining example of what can be achieved with a shared vision, a shared passion and a shared heart to work for the people they care about so much, all I can say is thank you, format the bottom of my heart  

Times they are a changing

Above is a little pastiche of my son Ben, ranging form seven months to about twenty nine years of age.

This is the most current photo I have of Ben, aged thirty three (nearly thirty four I can hear him shout!)

It's fair to say he's changed a bit but I think anyone who knew him years ago would still recognise him. From the day I brought him home from his foster Mum in Bath on December 4th 1990 I can say without fear of being accused of exaggeration that he has enriched my life. Not to say he hasn't aged me way beyond the thirty four years we've been together, and I certainly blame him for my head of pure white hair!

This selfie (not really part of my skill set) was taken yesterday as we prepared to watch the final of the Euros. We're still smiling and still I'm happy to say enjoy each others company. He's been responsible for many, many sleepless nights over the years for a variety of reasons but has also been (and still is) responsible for much laughter. It's rather like living with the cast of thousands from an old Cecil B De Mille film (showing my age!) his ability to throw together a costume and assume the identity of a film or TV character just from his wardrobe (and occasionally mine) is amazing. There have been so many dramatic entrances to our living room, unannounced but if he has disappeared for five minutes with talking then I can be fairly sure I'm about to receive a visitation.

When we finally ventured out after the covid restrictions lifted life had moved on without us, or so it seemed. I have to admit I had erred on the side of over caution, in fact we pretty much stayed in isolation for around eighteen months. (mind you, neither of us have had covid...so far) we had lost touch with many of the groups and activities we used to be involved with so life was fairly quiet. In around September 2023 we found our way to Down Syndrome Cheshire in Northwich.

Life has changed! Ben has found a place where he has made some wonderful friends, found a place where he shines and is accepted and where his gift of the gab has been recognised and utilised! He is now Chairman of the I Choose Board which meets twice a month and is a forum for adults (from 18+) to have a voice and express their hopes, choices, worries and expectations. He's been to 10 Downing Street!

He's a regular contributor to the new That Down Syndrome Podcast (I may have to change my name) and he's finally decided he quite likes having a go at some cooking and baking. He works alongside amazing volunteers and some of his peers on Monday mornings, at the DSC Hub, he's really enjoying painting some concrete planters for their garden project at the moment and he and his friends have planned the project and worked out the budget with the assistance of Julia and Colin. Another favourite activity is when they choose a meal to cook for everybody, they choose their recipe, budget, shop then finally at the end of the month they cook.

I can't praise or thank this truly amazing charity enough, they've brightened our weeks and we both feel so welcome and cared for. Ben is so happy that he decided he wanted to do a fundraiser as a gesture of his gratefulness so Monday July 8th he began his sponsored cycle challenge. 21 minutes every day for three weeks. (I'll explain the significance of the numbers next time.

Not my usual style of blog but I just wanted to find a way to share this incredible group of people, you can follow them on Facebook at Down Syndrome Cheshire and the website has the same title. I'm off now to inspect todays painting, not sure how much Ben has got on to the planters as he's just walked past and he is covered in magnolia paint!