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An open letter to friends and family

Kirsty MacCuish

Please ask questions. Down syndrome is not a taboo subject. Amelia having Down syndrome is not a taboo subject. Her behaviours are not a taboo subject. Her speech is not a taboo subject.

Obviously the fact that Amelia has Down syndrome is well known, but lately I feel like everything that comes along with it; feels like a taboo subject. No one wants to speak about it. Her speech, the need for a chewy, her shouting. Why does she grab? Why does she scream? Why does she get in your face? Why does she bite and pull hair? Everything is not ‘oh it’s alright’, behaviours need to be acknowledged, spoken about and understood by all. 

I’m going to be honest, a lot of what you could ask would be answered with an ‘I don’t know’, because just like Amelia we are still trying to figure things out. But we can give you some understanding and some background if not the whole answer. 

Don’t ever be afraid, we welcome questions. It’s our responsibility as Amelia’s parents to help you understand what’s going on, why she acts in certain ways, needs certain things. Why we stop certain activities when it looks to you like she’s having a great time, but we can see she’s getting overloaded and needs some time to calm. 

Disability isn’t a taboo, Down syndrome isn’t a taboo. I know everyone who knows Amelia loves Amelia, and you accept that she has Down syndrome, but do you really understand? 

I just ask for you to be curious, no question is out of bounds, we’d rather you know the truth than make assumptions. The more you ask the more empowerment we give Amelia, her similarities and differences both need to be acknowledged.