October is Down syndrome awareness month. Our campaign this month is called ‘A Day in the Life’. Throughout the month we will be sharing blogs from our community about what it’s like having someone with Down syndrome in their lives. Today we start with Poppie’s mum, Sharon, tells us their story. Thanks for sharing, Sharon!

Every day with Poppie, 8, is different, even with her triple diagnosis of DS, Autism and ADHD, which brings alongside it a need for routine and repetition, so there is never a typical day.

Her day can start anything from 2-3am to 7-8am until 9-10pm, she requires medication for her mitral valve regurgitation twice daily, but however long her day is or if she’s not feeling her best, she keeps going with her strength of character and sass. Her favourite pastime is everything ‘Strictly Come Dancing.’

Every morning it’s breakfast first, as food is always on her mind – even with her diet being gluten and dairy free – wash, clean teeth, get dressed and then hair. Poppie is currently toilet training, which has been ongoing since she was 3-4 and since her change of diet we have noticed a big positive change, where she is now recognising when she needs to go the toilet, this in itself is a massive achievement in such a short space of time, now it’s encouraging Poppie out of her pull ups into pants full time, but with her sensory needs this will be quite a challenge, as it’s the feel of the pull up on her skin compared to the feel of her pants. 

At any given chance Poppie will ask for your hand or for you to sit down so she can dance or do a dance move (her own version) before she will continue to get ready. If it’s a school day and there’s time before her school transport picks her up she will watch SCD on YouTube or listen to her favourite music playlist on Amazon Alexa, which sets her off for the day ahead.

Poppie attends a local SEN school which she loves and the teaching staff love her just as much, as she is well known to them all because she has been there since starting reception. Her speech is progressing and she likes to tell me the names of all her class peers and teaching staff as well as use her communication book, for anything she’s not sure how to say or pronounce. Whilst at school she will happily engage with the teaching staff and complete her work tasks or activities. There are days when this isn’t achievable, such as when Poppie is tired, so they try to engage her through lots of movement breaks and adapting the lesson task or activity, which helps to gain her attention for just enough time. 

This year has seen Poppie adapt to her first male teacher, which is going really well so far, only week 3 of the Autumn term though, so there is still time for this to change, however I think he has won her over for life by purchasing a Strictly Come Dancing CD for the class and letting her give him dance lessons, Poppie style.

Poppie accesses school transport from the local authority and has done for a few years. This September she has new transport staff including, driver and guide and things seem to be going really well, which is also showing us she is growing up into a lovely, accepting young lady and although her need for the same routine and repetition is a must, she also recognises and accepts as best as possible that things in life need and will change even if we would like them to stay the same.

Poppie is a young lady with character, sass and who loves and lives life to the fullest. She is my inspiration and I wouldn’t want her any other way.