Parenting a child with Down syndrome: Advice from one mum to other parents

��tv > Tips and Advice > Speech, language and SEND

Hannah and her husband David have two children, 2-year-old Amy and Ethan, 4, who has Down syndrome.

Family looking at book sat on sofa — Image caption,
Hannah, David and their two children Ethan and Amy.

So tell us about Ethan...

Ethan is a very sensitive and caring little boy. He loves playing with his sister Amy, she’s great for Ethan and he’s great for her. They’re a little team. He loves the outdoors – swimming, climbing trees and camping, in particular. David’s a scout leader so that helps! He’s suddenly really got into dinosaurs and enjoys doing dinosaur ‘roars’. Games, singing and listening to music are a huge passion too. Music has rhythm and helps with Ethan’s memory, so it helps make learning fun. He has the same range of emotions as any child and like anyone, he can sometimes be grumpy, but Ethan is Ethan and he’s totally outstanding. We’re so lucky to have him.

Ethan smiling and sat on sofa — Image caption,
Ethan has lots of passions including games, singing and listening to music.

Communicating with Makaton

Baby signing was something we were always planning to do when we had children. It’s a great way they can explain themselves and feel less frustrated.

And when we found out Ethan has Down syndrome, we were even more determined. We found and joined an amazing local , who introduced us to Makaton. We started watching Mr Tumble when Ethan was around 6 months old and also also found a great website and YouTube channel from , who are two mums who sing and sign in Makaton.

Ethan picked it up so quickly – he was signing basic signs from about 6 months – I had to go on a Makaton course with a charity called so we could keep up with him. I thought it would be hard because I wasn’t great at languages at school but it’s so logical. Amy now uses it too, as do our friends and family and teachers at Ethan’s mainstream school.

Makaton makes our home life very calm as we don't misunderstand each other

You have fewer temper tantrums because everyone can get across what needs to be said. It’s helping us all and we’re learning from each other. It’s also a beautiful thing to do together. Makaton gives Amy and Ethan a voice, but it’s also given me confidence. We were at a restaurant for Ethan’s birthday recently and I taught the waiting staff so they could join in with singing and signing happy birthday.

Ethan finger painting with David. — Image caption,
Makaton helps the whole family communicate at home.

How we follow Ethan’s lead

Ethan is reaching his milestones at his own pace. We adapt the surroundings to suit him and help him reach his full potential, rather than trying to change him. For example, he might not want to sit at the table one day, so we’ll sit on the floor together. We’ve never said ‘do this, do that’, that would make him do something that he doesn’t want to do.

All our learning happens through play and because he’s interested, he wants to do it.

Yes, it might take us a week to achieve something and we might have to repeat ourselves but he does it, he works it out. And when he does, it makes your heart sing. Take storyboards. At the beginning of one week, I started by drawing the pictures and writing the words for him and by Friday, he’d drawn the pictures himself and written the words himself, in his own way.

Music is so important in our house; singing and signing are a key part of our speech therapy. Although Ethan has mild hearing loss – he’s had hearing aids since he was 8 weeks old – he picks songs up very fast and can sign anything from a basic nursery rhyme up to the whole of the Greatest Showman. His favourite song at the moment is The Lion Sleeps Tonight and he’s really got into Nick Cope’s Popcast – although he doesn’t sign, the songs are slow and rhythmic so Ethan can pick them up and he can sing along.

Amy is a huge support for Ethan. She goes with Ethan everywhere, including hospital appointments and she’s there when I do speech therapy at home. You’ll see her pick up a pen and draw something straightway, and then you’ll see Ethan pick it up but not massively do anything. But then with her encouragement, he’ll draw something.

Ethan surprises us every day.

Recently he’s been watching David turn on the hose every day to water the garden but we didn’t realise he knew how to do it. The other day he turned the tap on and sprayed us all. You can never underestimate him.

Family sat around a table — Image caption,
Ethan and his younger sister Amy are a great support for each other.

Finding a support network

Ethan’s changed our lives for the better. I’ve always wanted to teach and because of Ethan, I’m now doing that.

I would always recommend finding support to other parents.

There is loads of online support available – we love , all about the ups and downs of having a child with Down syndrome. We’ve also got an amazing group of friends through PSDS. No one judges or compares, they’re so supportive and they understand, which is amazing. We’d be lost without them.

One thing that’s really important to us is that you should never compare yourself or your child to others – it’s just not worth it.

And never give up on those days you think your child isn’t listening to you because you’re always helping and teaching them without you even realising. They will surprise you by what they can do.

The journey you are on with your child won’t always be straightforward but it’s the most rewarding trip you will ever take. Your child will always get there so don’t put pressure on yourself or them.

For more information on Makaton and to find a course near you, check out the .