Welcome to ‘A Day In The Life!’
What is it like having someone in your life with Down syndrome? What is it like having Down syndrome?
This Down Syndrome Awareness Month, we gave you a peek into the day to day lives of some of our families and individuals with Down syndrome. The joys, the challenges, the lives which often will look more like yours than you would imagine….
Please join us in recapping this month’s posts across our social media pages. Read our posts and blogs, listen to and watch our mini-documentaries, and learn what our lives are like.
Some of our families have created short documentaries where you can see and hear for yourself a typical day in the life of a family with a member who has Down syndrome.
A Day in the Life with Poppy…
Meet Poppy and her mum, Philippa. They take us a little insight into what a day is like for Poppy.
A Day in the Life with Liam…
A Day in the Life with Harry…
A Day in the Life with Jessica…
A Day in the Life with Rheagan…
A Day in the Life with Keldan
A Day in the Life with Andrew
A Day in the Life with Carlson
A Picture speaks a thousand words
Some of our families shared a day in their lives via a picture that tells a story. Here are just a few but you can find the rest across our social media channels.
Clare tells us about Willow and her sisters.
‘A day in the life of Willow… it can vary really, but it’s just a regular as yours, just with a few adjustments. She shouts me when she wakes, snuggle cuddles straight away and then she’ll sign for toast! It’s lovely having time in the morning with Willow as before I know it, her sisters are up and I don’t get a look in! They are just as equally besotted with her as she is with them, and their bond is unbreakable. They each have a different relationship and I love to watch them play and laugh together – that’s all they do, they giggle all the time!
The empathy Willow has for her big sisters is so developed and from such a young age. She really worries if her sisters are upset and will always go over with a comforting arm around them and an ‘are you ok?’ babble. Her caring nature is guaranteed to make Lottie or Ivy instantly feel better.
Whether they’re playing Harry Potter and Willow’s casting spells on them, or they’re pretending to be horses, playing with Happy Land, climbing up and sliding down the slide, or just relaxing into each other watching ‘Spirit’, these three really are the best of friends and miss each other when they’re not together.
I love watching them, and no day goes by where they aren’t laughing, jumping, shouting, sliding or playing together. They truly are a gift to each other, they really are. I couldn’t be prouder of my three musketeers.’
James’ mum Kate tells us some of the things that make up a typical day in the life for James.
‘James is a typical teenager. He wants to be one of the gang and that is how
he is treated and how we have always assumed it would be. Happiest when he is getting on with life just like his brother and sister with whom he shares two of his favourite things!
Firstly he loves high school. Loves it! No skiving extra time off after an appointment for James! We can’t even pop in a shop for milk! He wants to enjoy every second and that is where all his peers are so that’s where he wants to be. Part of his school routine is his wearing ankle splints. We help James put on his splints every morning. They are rigid splints that provide stability at his hypermobile ankles so that he can try and recruit his core and leg muscles more efficiently and so with less fatigue. James never complains about wearing his splints for over 7 hours a day at school. We are in awe of his determination to be in school just like his peers, even if that means having very hot feet and ankles trapped inside rigid plastic that digs in a bit! School wear is the only time of splint use that James has never challenged. That is no coincidence.
His second favourite thing is being in water. In water he can be splint free and move as comfortably and freely as his siblings and his peers. Often more so. He attends swimming club and takes part in swimming galas. He also enjoys time in the sea on boards with his dad and brother and sister. We love to see the freedom of movement that the water provides him. He moves effortlessly above and below the water and has a phenomenal lung capacity! (As witnessed by the swim club lifeguard when he is in a mischievous mood!) This is such a contrast to the effort his body has to put in to his walking on land.
The picture is of James with Daniel his brother and Emily his sister. They have just been having a fantastic time in the sea on the boards with Dad and Mum is chief coat and camera holder. This is the image we imagined before children. No, we did not imagine the back story of splint use or any of the other things unique to each of our children but we did imagine 3 siblings united in their love of each other and of course of water!’
A Day In The Life – today Katherine tells us about Eli’s after-school activity.
‘I wanted to find Eli an after school club that he would love and be accepted in. We tried dance, martial arts, looked into swimming and music. We found he struggled with the length of the activities, following instructions and, as he is non-verbal, being understood. We then looked into Riding for the Disabled. He’d never been near a horse or sat on one. First lesson and he signed ‘horse’ and practically jumped on it. He’s had 2 lessons now and loves it. He concentrates, knows to pat the horse to ask it to move and has even started saying ‘go,go’ as he pats the horse. He never wants to get off at the end of the lesson. He had such a massive smile when he got on the horse and waved bye to us as he started moving, showing he was happy. We are so proud and pleased.’
Today Mia’s mum Katie shares their story.
‘A day full of giggles, games, playtime, nursery rhymes, colouring and cuddles, lots of cuddles!
Not much different to anyone else’s day really. The only difference is that our games, playtime, nursery rhymes and colouring may include some more therapies than you might think or notice but we have lots of fun while we do them, with Mia giggling loudly. However if she doesn’t want to do something then expect a tantrum where she will sulk and the bottom lip makes an appearance! She has definitely got a stubborn streak!
She loves singing and her favourite rhymes to sing are Twinkle Twinkle and Wind The Bobbin Up and, if you ask nicely, she will more than willing give you a rendition complete with actions!
Due to COVID we were unable to attend playgroups and I was worried that Mia may struggle when it came to interacting with other children her age but she has recently started nursery for 2 afternoons a week and loves it, asking to go every day. Maybe she’s sick of mummy trying to sing the dinosaur stomp song…..?’
‘Sam was recently asked to be a guardian to our friend’s little girl. He answered by saying, ‘I would be honoured!’
Here he is on the morning of Molly’s naming day, getting ready and sorting out his tie.
When Sam was younger and at middle school, he had a tie that we had tied and then stitched. A snip and bit of Velcro at the back meant he could then be independent.
Friends and family helped him learn to do his own tie and he’s never forgotten!’
Lesley, Sam’s mum.
‘When Connie was born with Down syndrome I felt so scared, because I just didn’t know what to expect. Luckily that fear disappeared really quickly because I had fantastic support from friends and family. I feel incredibly luck to have such a wonderful daughter and support network.
Connie loves attention and making people laugh is her favourite thing to do, so it wasn’t surprising at all that she was a natural in front of the camera. She has been in many campaigns and taken part in a lot of modelling shoots now and every time I’m just filled with pride. I just love seeing her so happy and she is just so great at what she does.
I’m also so impressed with how inclusive and open minded our photographers and directors always are. The shoots are always handled in a fun way, with them getting down and showing her exactly what they want. This really adds to the fun! When Connie feels at ease she produces her best work and we are lucky enough to work with people who understand this.
Her modelling journey has been a fabulous experience for our family and watching her grow and succeed is everything to us. So many people doubt children like Connie, so watching her smash those stereotypes means the world. I’m so excited to see where this path takes her and we are ready to enjoy every moment. Connie really is taking the world by storm.’
Julie, Connie’s mum.
‘I was worried, when Jessica was born, what the impact would be on Annabelle. Would they have a typical sisterly relationship or would Annabelle be resentful of the extra care & attention Jessica needed? 4.5 years later I dont know why I ever worried, the bond these 2 have is amazing, Annabelle looks out for & teaches Jessica so much, she is her biggest cheerleader & best friend, they also fight like cat & dog which also makes me smile as it shows they really do have a “typical” sibling relationship.’
Katie, mum to Jessica and Annabelle.
‘This is Ellie, practicing her handwriting with her daily exercise book. Since the summer Ellie has been doing handwriting practice time almost every morning and when school started she didn’t change the writing practice routine and she does after school. First thing when she comes home, she likes to have snack and milk then we talk about how her day at school was. She likes to sit and concentrate on her writing independently and finish about 2 to 3 pages in about 10 to 15 minutes, then we move on to diary writing. We discuss what she enjoyed at school, how she was feeling today at school and what she learn today. I also tell her how my day was. When she is too tired, I write down what she tells me so we can share our day. At home since she was little we have focused on helping her independent communication skills to express her feelings and thoughts. We also work on her observing and understanding other people’s feelings to help build good relationship with those around her. Now she enjoys her social life at school and outside of school and she feels big joys that she can choose what she wants to express in speaking, writing, drawing, reading. This is a huge joy for me and my husband. She also love piano, dance and tennis for which she takes lesson every week.’
Naoko, Ellie’s mum.