21 Resources for Trisomy 21 on World Down Syndrome Day

Picture of Hayley and Natty with WDSD logo

Each year families, educators and charities come together to celebrate World Down Syndrome Day on 21st March. The date was chosen to represent the three copies of chromosome 21 that those with the condition have, and it’s a time for some to fundraise, others to share information and for all of us to pull together in unison to tell the world about the contributions our loved ones make.

While the day sees some people completing random acts of kindness, creating moving videos, wearing lots of socks or completing a Dance-a-thon to express their joy, I'd like to share some of my favourite resources with our readers for #WDSD2018.

As the founder of blog Downs Side Up, Mum to model Natty and author of I Love You Natty,  and Talking About Downs Syndrome: Conversations for New Parents I've compiled a sample list of 21 books, blogs, personalities and support groups to whet your enthusiasm. 

Before we begin, if you're on Twitter today from 11am-1pm, join actress, Sally Phillips and myself as we take over the Mencap Twitter feed #wouldntchangeathing

On your World Down Syndrome Day Book Shelf

  • A Major Adjustment is the sequel to book A Minor Adjustment by Andrew Merriman and launches this month. This father writes with honestly, humility and humour about his daughter Sarah and I can’t wait to read the latest installment, as the first book was a real game-changer for me after Natty was born.

A Major Adjustment by Andrew Merriman

  • Can I Tell You About Down Syndrome? by Elizabeth Corcoran. This is an essential fact book written from the perspective of a young man with Down’s syndrome and is suitable for young people and adults alike.
  • The Label by Caroline White is beautifully illustrated by Sandra Isaksson and recounts one Mum’s experiences of overcoming her initial shock and conflicting feelings to cast aside the labels put on her son Seb and ultimately delight in his many achievements.
  • It's Signing Time. You haven’t lived until you’ve watched a Singing Hands Christmas DVD in August. Singing Hands are everyone’s favourite Makaton signers and singers. They’re Mums too, so really understand the importance of fun ways to boost your child’s communication. Watch out for their new album and DVD launching this year containing pop songs aimed at older teens and adults.

Blogs to Get You Thinking

  • The Diary of a Not So Ordinary Boy is written by fellow SNJ columnist Nancy Gedge; a Mum and an experienced teacher with a speciality in SEN. Check out her education-focussed blog, as well as her book Inclusion for Primary School Teachers.
  • Minis and Mum is an award-winning blog by Mum of two Aédin Collins who write about travel, the challenges and the awesomeness of the chaos that is life with an extras chromosome.
  • I am River by Hayley Balzoi recounts the family's adventures as they divide their time between the UK and life in Tanzania. Follow them as they learn and grow together.

Blogs are cathartic and educational

Champions with Down's Syndrome

  • Twincess are beautiful twin girls called Abigail and Isobel who have Down’s syndrome. They really rock their extra chromosome and their Twitter feed proves that they live life to the full.
Twincess Abigail and Isobel
Twincess Abigail and Isobel
  • Inspiring Tommy Jessop was the first actor with Down’s syndrome to play Shakespeare’s Hamlet and appeared in TV dramas Holby City and Coming Down the Mountain.
  • Sarah Gordy is an accomplished actor, speaker, model and dancer as well as an all round wonderful person. She has worked in Call the Midwife, Upstairs Downstairs as wel as commercials andmedical training videos.

Signposting Support

Sometimes we all need to turn to experts for advice and information and the following charities are leaders in the field.

  • Official charities such as the Down’s Syndrome Association, Downs Education and Down Syndrome Scotland can support, offer resources and also signpost local groups in your area.
  • Positive About Down Syndrome is a new website sharing parents’ experiences inorder to give balanced information to prospective and new parents, as well as their healthcare providers.
  • ERIC are the childhood continence experts. They have information, tips and practical products for sale. Whether your child has constipation, wetting or soiling problems, they are there to help.
  • Check to see if The National Portage Association is available in your area. Portage workers come to your home to help you with Speech and Language as well as Physio exercises and they are excellent at involving all siblings, as well as giving you the confidence that you are doing a great job with your child.
  • IPSEA offer free legal SEN advice, as do SENDIASS. So get in touch and ask for someone to help you through the EHCP process. They can sometimes even attend meetings with you.
  • Sleep Solutions by Scope offer practical advice and support for parents of children with SEND who have sleep problems. From establishing routines, to setting up a good sleep environment, to advice on medication, they really know what they are talking about. Sign up for a workshop with one of their sleep practitioners in your area.
  • Read the All Party Parliamentary Group paper entitled Down's Syndrome: Good Practice Guidelines for Education. It's packed with information on learning styles, methods that really work and links to stakeholders and resources for use in school and at home.

Online Forums to Join

Online forums are popular these days and may help reduce feelings of isolation especially f you find it hard to get out to attend support group meetings. They offer families and carers a place to share and connect, swap tips or simply let off steam after a difficult day.

Firefly Community

  • Future of Downs is a parent-led Facebook group with over 5,000 active members.
  • Down's Syndrome: Grandparents Chat UK is a forum run by the Cornwall Down’s Syndrome Support Group and is a unique and exciting place for grandparents to ask questions and of course swap boasting stories. Look out for their book Tea at Grandma's launching this month.

So whatever you are doing this World Down Syndrome Day, whether you take a peek at any of these resources or not, do hug those close to you a little tighter and be grateful for having them in your life.

And now watch Watch 50 Mums, 50 Kids, One Extra Chromosome the viral carpool Karaoke video made for today:

 

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Hayley Goleniowska
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Hayley Goleniowska

Parent Advocate/Blogger at Downsside Up
Hayley Goleniowska is the author of the popular blog, Downs Side Up, where she writes about life with her daughters, one of whom has Downs Syndrome, and other issues surrounding disability.
Hayley Goleniowska
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