A recording of this presentation is available HERE.
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Larkin O'Leary and Emily King presented this week as leaders of the Common Ground Society, a local non-profit offering support to "families who receive any life changing diagnosis for their child." Examples of life-changing diagnoses include Down Syndrome, Autism, and birth complications, but also rare genetic diseases.
They vulnerably shared their own stories as parents of children with special needs, and they challenged us to rethink how we speak to parents about their children's conditions, to debunk disability stereotypes, and to remember to listen to parents.
Some important takeaways and some possible ways to say things:
- "Congratulations on your beautiful baby!" are ALWAYS the appropriate first words for any new parent, despite any differences noted before, at, or around birth.
- Being clear is kind.
- Be careful with "maybe we will just watch that" without clarifying exactly what it is we are "watching".
- Avoid "your child is not normal". Try instead "this is unexpected".
- Consider "We are about to go on a journey. . .there will be lots of questions, and I am here to help and to ride with you on this journey".
- Look to the family for guidance, consider "What do you think is going on, mom?"
- Be careful with handing out the standard "milestones sheets" at Well Child Checks
- Talk to kids with disabilities in an age-appropriate manner (e.g. don't talk to a teenager with DS as if they were a toddler, use age appropriate language). Consider: "I am Dr. V. I am going to ask your mom some questions."
- Remember parents are doing their best.
- Be a kind human.
- Remember, this is your job, but this is their whole life.