We get it – you want to say the right thing, and what you were trying to convey just didn’t come out right. We’ve all been there. For parents of a special needs or medically-fragile child, words carry weight. And while we appreciate open dialogue and friendly conversations, the sting of an unintentional jab can leave a lasting impact.
Here are 5 things you should strike from conversation, why they’re triggering, and what you can say instead:
1. God/life only gives you what you can handle.
Why is it a trigger? The day-to-day is often overwhelming. Some days we feel like we can’t handle it, but we do. This statement also devalues the importance of a support system.
Instead try: It seems like you have everything under control, but I know it must be difficult, is there anything I can do to support you?
2. I couldn’t deal with everything you do.
Why is it a trigger? We don’t have a choice to “deal” with having a child with medical complications, or special needs. You could deal, you just don’t want to think about having to. And while that’s completely understandable, it further deepens the divide we feel from parents of typically-developing children.
Instead try: I’m amazed by how much you juggle.
3. What is your child’s diagnosis/What is wrong with your child?
Why is it a trigger? Medical privacy is important, and parents shouldn’t feel pressured into divulging sensitive information about their child. While some parents choose to disclose diagnoses, others feel that it violates their child’s rights.
Instead try: Developing a bond with parent and child that’s not based on limitations or diagnoses. *Exception to this rule: if the child will be alone in your care, without parental supervision. It’s then appropriate and necessary to ask for the child’s medical diagnoses, emergency protocol, and any accommodations he/she might require. But please don’t ever say, “what is wrong with your child?”
4. I knew someone with X diagnosis and X bad thing happened to him/her.
Why is it a trigger? Many diagnoses have a wide range of presentations. While two people can share the same medical terminology on their charts, it can affect them in vastly different ways. Also, let’s please stay positive. Chances are we’ve seen enough doom and gloom, and don’t need to pile-on with worst case scenarios.
Instead try: Listening. If a parent has shared their child’s diagnosis with you, it likely means they trust you. Simply being there to listen, and provide positive emotional support, can go a long way!
5. It makes me want to hug my babies a little tighter.
Why is it a trigger? We understand that our lives seem difficult, and that our children’s care is complex and emotionally hard to handle. However, we love our children deeply. Telling us that a glimpse into our lives makes you long for your own healthy/typically developing children is hugely offensive.
Instead try: Saying, “Sending you a big hug, and one for your amazing kiddo, too!”
Remember, it’s okay to misspeak. When I was growing up, my dad would always remind me that, “It’s not about the mess you make, it’s how you clean it up”. If you say something that comes out wrong, or if you’ve upset someone, an apology goes a long way. A smile, and genuine effort towards support and connection are all we’re looking for.
Lahna Son-Cundy lives in Newport, RI with her husband and two kids.
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