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 and late nights and the invaluable support of many professionals.

Whether your child is starting at mainstream or special school, 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 us, as well as some invaluable support groups that you can consult for advice tailored to your child's needs, whatever their stage of schooling.

Tips that worked for us

1) Invest in the TRANSITION PROCESS 
Natty knew the school she was going to because she had accompanied me to drop off her sister off there for 3 years and had met all the staff and pupils. Pre-school staff still invested a lot of time, bringing Natty and a small group of peers to the school for weekly play sessions in what was to be her new classroom with her new teacher throughout the last half of the summer term.
We read lots of books about school, and did sticker work and school related art too. There are loads of books available that can help children to get to grips with the idea of school, see our Pinterest board for ideas, and sit down with them to read stories like this, so that they can learn more about the magic of school and what to expect from their new routine. Going to School shows photos of children with Down's syndrome enjoying every aspect of school life.

I took photos of key members of staff, teacher and TA and important areas of the school such as the dinner hall and the toilets. We then stuck the pictures into a scrapbook with the names printed underneath and talked about them during the summer holidays. This is important because 6 weeks is a long time in which to forget the great work achieved in 1). You could also use a talking book and record you or your child saying each name.
Meet up with children who will be in your child's class for play dates during the holidays if possible.

3) Let your child make choices about their UNIFORM

Perhaps choosing the shoes or school bag or pinafore/trousers from a choice of two. Buy plenty of uniform (I stocked up on cheap second hand items) so that I never became stressed when it was dirtied, wet, painted on or even ruined. I bought 10s of pairs of cheap pants so they could be thrown away if beyond washing. Leave two changes of everything at school.

Make uniform buying as simple as possible. Some stores offer special opening hours with a quieter atmosphere for children prone to sensory overload. The store doors are also locked to remove the worry about children running away, something I know would have helped us enormously when Natty was younger.

4) ROLE PLAY school at home
Let your child dress in their uniform and make a school corner. Make it fun and exciting and tell your child how grown up they are and how proud you are of them. Natty loved practising sitting on a carpet for a short story and then getting a star sticker for good listening. We also bought story and sticker books about starting school to share together.

5) Start at your CHILD'S PACE 
Every child is different and their physical and medical needs vary. Natty was small and got tired very easily, so we started with mornings only and added one afternoon a week until she was full time. If she was tired at all I would pick her up at lunch time or even take a day off. 

6) All children with a statement of SEN are entitled to FLEXI-SCHOOLING 
This would not suit all children or families, but in yr 1 I chose to educate Natty at home each Wednesday. This allowed a slower, quieter day, where we could consolidate what was being learnt at school as well as working on life skills such as laundry or grocery shopping. We also had time to swim in the afternoons. We continued this until Natty asked to be at school with her friends every day.

You can flexi-school your child at home

7) Try to Build good relationships with your child's SENCO, TEACHER and TA 
Make suggestions of ways in which you can help at school/home. Don't be afraid to voice concerns or worries early on too, as they are probably learning as they go along, just as you and your child are. Use a home/school diary to write about the day's/evening's events for each other. Use photos to prompt talking about the weekend.

Don't be afraid to suggest materials/methods that your child likes working with. See some of the sites listed below for ideas, or give the list to your child's teacher.

Make a visual timetable 

for the morning routine

9) Ask for an INTIMATE CARE PLAN to be made up if your child is not fully continent when they start school
This will include where and by which 2 members of staff they will be cleaned and changed. Changing table and wipes, bags etc.
This, along with any requirements surrounding eating, drinking or taking medication should be noted in the Statement.

10) There will be suggestions and exercises and from Speech and Language Therapists, Occupational Therapists, Physiotherapists, Educational Psychologists, Doctors, Computer Experts... 
Sometimes it all feels overwhelming, but take what you can and what you think works best for your child and don't fret about doing it all all the time. Remember that above all else your child must enjoy school, make friends and learn to be as independent and confident as possible. He or she is your wonderful child and not a case study. Enjoy your time with your child.

Essential Contacts when your child with Down's Syndrome is starting school.

The Downs Syndrome Association produce a fabulous Primary Education Support Pack for teachers which covers all aspects from Inclusion to Numeracy Skills. It can be downloaded free or purchased on a CD ROM. Their Education Information Page also includes advice for parents, statementing support and SALT advice for children beginning Primary school.

Scope also have an Learning Together Guide produced for children with disabilities in mainstream education.

The DSE (Down Syndrome Education, formerly DownsEd) have developed lots of super materials designed to aid reading, writing and numeracy skills such as See and Learn. Their online shop can be found here. They also stock Numicon sets.

For free, legally-based advice surrounding the Statementing Process, visit IPSEAIPSEA can help with form filling, transport queries and what to do when a Council refuses to assess your child for example.

Tania runs the website Special Needs Jungle with news, information and informed opinion about SEN and disability for parents, by parents. She has written an invaluable book SEN - Getting Started with Statements a great place to start.

TES SEN produce worksheets and lesson plans for use by teachers working with children with additional needs.

More free posters, labels and worksheets can be downloaded from Twinkl.

Amongst other resources, Makaton provide a free Back to School pack of symbols which you can download here.

Numicon make a highly visual set of numeracy aids. School sets and home starter packs are available via DownsEd (see above).

To help with reading and writing, read our Writing Tips here, which includes info on seating positions, pencils, pencil grips and writing slopes as well as Jolly Phonics sound system and Ruth Miskin letter writing scheme (available from Amazon).

ERIC are the Childhood Continence Experts. Their site sells products to help with the toiletting process, whatever stage you are at, from protective underwear and swimwear to sheeting and story books for children to help with understanding.

And if your child is making the step to secondary school, the Foundation for People with Learning Disabilities (FPLD) has a useful transition leaflet here.

You can buy the book Inclusion for Primary School Teachers by Mum and teacher Nancy Gedge here: 


  1. Replies
    1. Thank you, been meaning to draw it all together for quite a while.
      H x

  2. This fantastic and perfect timing for us as Jacob has his first transition session at school today. Thank you for such brilliant ideas.

    1. Oh I am glad to hear that. I hope all goes well for Jacob.
      H x

  3. This is great post! Thank you. My son is only going to mainstream nursery this year, but I am already stressed about next steps:)
    Kasia (mum to a 3 year old with genetic syndrome (Kabuki Syndrome))

  4. Lovely post. Mind if I paraphrase it into my own words?

  5. Replies
    1. I'm sure it's not exhaustive Sue, but wanted to put as many sources of support in one place for parents at the beginning of the school journey.

  6. What a fabulous resource and great advice, perfect for ANY child started school. Thank you for joining in.


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