Down Syndrome Diary Spreads Love Across the Globe

Seven years ago, new Detroit Mum Jamie Freeman wrote a personal message into a pristine leather-bound diary. Simply wanting to correspond with other parents with a child with Down's syndrome, she had no idea who would read her words about her beautiful son Benny, or the hands that would write within the book as it travelled through 26 families and across four countries and two continents.

She certainly didn't know that she would later publish The Down Syndrome Diary in a beautiful coffee table format for others to read, pulling its stories together closely, just as she would draw the contributors in, becoming an online family.
"Thank you, whoever you are, 
wherever you are, for your words..."

Jamie wrote her story into a beautiful book she would send out into the world. You can read her blog Ben Through it All here. 

9 Tips for Parenting a Child with a Learning Disability

Advice for parents, aimed at nurturing confident, happy children with a learning disability. 

Few of us would say we were prepared for our babies to be born with a Learning Disability and for many there will be a time of readjustment, even mourning for the baby you thought you were expecting. But it’s important to learn to accept your child for who they are and not try to make them someone or something they are not. That leads to frustrated parents and unhappy children. There will be challenges but you will learn and grow together in dealing with them.
I had to give myself a talking to when Natty was tiny as I felt she was turning into a ‘project’, simply the target of lots of SALT and physio activities. Of course, she is our daughter and sister first and foremost. Success at school is not the be all and end all in life and in fact having Natty in our lives has made us re-evaluate our priorities: friendship, food, music, travel, family, enjoying the moment. Time spent at home with a loving family will influence your child the most.

Bumper Down Syndrome Awareness Month Giveaway!

Here at Downs Side Up we are super excited to be able to offer a BUMPER collection of fantastic gifts this October to mark Down Syndrome Awareness Month.

Books, a DVD and Lip Warrior
Enter our Rafflecopter competition to be in with a chance to win all these goodies

Tips and Contacts for School Pupils with Down's Syndrome

It's that time of year when many of you are preparing your children for a new term at school.

Tips for school pupils with Down's syndrome

I think back to the time Natty came to the end of her pre-school years and remember the stress and worry, the form filling and meetings, all mixed together with pride that she was making this huge step for the first time. I remember a lot of tears of worry,  late nights of planning and the invaluable support of many professionals. In the current pandemic things are even more fraught with EHCP plans put on hold, social distancing to ensure and the struggle of home education for those of us who feel woefully under-prepared.

Whether your child is starting at mainstream or special school, or starting back after lockdown, you will want to get through this process as smoothly as possible to ensure the right package of support for your child.
So here are a few tips and ideas that worked for me, as well as some invaluable support groups that you can consult for advice tailored to your child's needs, whatever their stage of schooling.

Sleep Strategies for Children with Down's Syndrome

Any sleep-deprived parent will tell you how debilitating that all-consuming exhaustion is. The brain fog, irritability, lack of concentration and a complete obsession with getting a few hours uninterrupted kip under your belt is a completely natural part of parenting. But you expect/hope/pray it will end after a few months.

Sleep hygiene is important for everyone

Up to 25% of all children have a sleep problem at some time (Mindell and Owens, 2003)

But for many parents of children with additional needs this pattern of broken sleep can last for years, or indefinitely. And of course the children themselves are suffering from disturbed sleep too, which has an impact on physical wellbeing and cognition.

Make Life more Accessible with Fenetic Wellbeing Mobility Products #AD

When researching mobility products online as part of my research for updating an accessible travel piece, I came across Fenetic Wellbeing.  

Mobility products themselves aren't that exciting, let's be honest. I can't make you giggle with an anecdote about a reclining chair. (but please do send yours in if you have one!) 

Down's Syndrome: Sally smacks medics between the eyes with screening truths

Sally Phillips addresses 4000 at the Royal College of Gynaecologists World Congress 2019

Sally Phillips is one incredible woman who has endured more than her fair share of front row hecklers, not just as a comedy actor, but also when she created the brave and thought-provoking BBC Documentary A World Without Down's with film maker Clare Elizabeth Richards. It got everyone talking about the thorny topic of screening. And more crucially the even pricklier topic of 'screening out' babies with Down's syndrome.
"The right words at the right time 
to the right people"
3 years on and Sally's film afforded her the opportunity to speak to 4000 obstetricians and gynaeclogists from all across the globe. I am proud to be able to share the transcript below.