Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism

Toy Story 3 (and a 1/2)


I love how uncomplicated children can be.

A question that I have heard many people in the Down’s Syndrome community ask is this:

How do you tell an older or younger sibling about their sister or brothers’ condition? 

When is the right time and what exactly do you say? How much will they understand?

I have an urge to prepare M for the day she is asked questions about her sister. I worry for her being given a hard time or even bullied because of her sister’s condition. How do I prepare her for other people’s sometimes negative or hurtful reactions?
What struck me very early on was that M saw nothing different about Hazel. I found this hard to get my head round. Some days, all I could see was the condition. Not every day, just some. So it was wonderfully comforting to see no recognition or awareness in my daughter’s eyes of this label. Hazel was and is Hazel. Or “baby ‘Azul”, as she would call her.

One day, I plucked up the courage to ask her the question I had been wrestling with. She was playing on the carpet with her toy figures.

“Do you know that Hazel has something called Down’s Syndrome?”

Ok, maybe not the most inspired of conversation starters. I was still learning. I held my breath, waiting for her reaction. In my head I was anticipating her urgent questions. How would I now define the condition for a 3 ½ year old?

I needn’t have bothered.

What is it?” She looked up, quizzically. “Is it a toy?”

I shook my head and laughed, mostly at myself.

 “No it isn’t a toy.”

And, before I could launch into my preschool definition of Trisomy 21, she had resumed play. Cinderella was heading off in the carriage to the ball. Prince Charming was waiting patiently behind a cushion and the Ugly Sisters were face down on the carpet. Their presence no longer required.

Her disinterest in my dilemma was overwhelming. Having established what was of most importance – that her sister’s (and I quote) “Down Dome” wasn’t something she should rightfully be playing with, M moved on.

Toys are everything when you are 3 1/2.

That day I learnt a valuable lesson about worry and anxiety. I wish I had not spent so long fretting over an issue that wasn’t. M will have her questions, no doubt. She will probably have to face those who are less than favourable about her sister. Yet she is growing up with an inbuilt acceptance of Hazel for who she is. It’s an acceptance that has always been there. No questions asked. No reason to be treated differently. Let’s just carry on playing and enjoying life, can we mum?

OK then.

Uncomplicated, humbling, love.

Sister not Syndrome.



Author: DownrightJoy

Married. Mum of 2 girls, one of whom has Down's Syndrome & Autism, the other Dyspraxia/ASD. Follower of Jesus. Finding joy in unexpected places.

4 thoughts on “Toy Story 3 (and a 1/2)

  1. Great piece again, and thank you for sharing your experiences.
    I know from our own experience, that there is never a good or even a right time. For our N, she became aware of differences between herself and E based on the numerous visits to doctors, hospitals, therapy appointments and all the medical related scenarios. N then had questions some of which we could answer, others we had to say honestly, we don’t know. I do recall N asking if E would ever get better from DS. Use the natural moments to your best benefit.

    Liked by 1 person

  2. Yes, it’s a good lesson to learn…let things take their course, happen naturally. I have wasted too much time trying to control and cover every eventuality.

    Liked by 1 person

  3. You will find the right time and what to say. We wondered exactly the same thoughts, and that’s why we ended up producing a sibling support book written by the big sister herself. You might even find I love You Natty: A Sibling’s Introduction to Down’s Syndrome is a vehicle that acts as a start point when the time comes.
    Thank you for linking to #TeamT21


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