"Before you speak ask yourself if what you are going to say is true, is kind, is necessary, is helpful. If the answer is no, maybe what you are about to say should be left unsaid." — Radio Host Bernard Meltzer.
The above well-known saying has been around over 50 years, and yet too many hurtful comments are made, often unknowingly. Families of children with Down syndrome know this all too well. Callous comments can sting, hurt and scar people far longer than most realise. Some are never forgotten.
Because we could all use this reminder to be kinder to one another, and releasing hurt can be cathartic, we reached out to a community of parents who have children with Down syndrome. We asked them to share comments they have heard about their children that actually hurt. Hopefully these answers are yet another reminder of the importance of being kind, advocating for natural inclusion and awareness and looking out for one another.
1. When people don’t see your family member as a person first.
“My oldest daughter hates when the word Downs is used before the person. She has a sister with Down syndrome, not a Downs sister. She’s her sister first, before anything else.” — Wade S.
“I hate it when people, especially teachers and doctors, call my son a Down syndrome or a Down syndrome boy! Yes, he is a boy. You can call him Aidan. Oh, and he does have Down syndrome.” — Vanessa W.
2. Hearing “functioning” language is defeating and exhausting.
“’Will he be high-functioning?’ Nothing limits his functionality except one’s expectations of him. That’s right — read it again and let it soak on.” — Ron M.
3. Hearing the incorrect “happy” stereotype, again.
“They’re always so happy.’” My little guy gets sad and hurt the same as anyone else. Assuming he’s always happy takes away his humanity.” — Jennifer M.
4. Comments that imply your child was a mistake.
“’Awwww, I’m so sorry.’ With the pity look. I bounce back with a smile and say, ‘Sorry for what? He’s a whole loving little mess just like any other child.’” — Nichole T.
5. Feeling the constant barrier of low expectations.
“Every IEP: School: ‘What’s your goal for your daughter?’ Me: ‘To grow up, be as independent as possible and leave home.’ School: ‘That’s a little unrealistic isn’t it?’ Me: ‘Why? That’s the goal for all my kids. Why should she be different?’ School: Frowns, shaking heads, bewilderment… no understanding.” — Cathy F.
6. Feeling your child is unwanted in this world.
“[People have said,] ‘If I had a child with Down syndrome I’d have to have it adopted. I couldn’t cope.’ Well, don’t have children then.” — Stacey B.