As a Pediatrician I often see kids (and parents of kids) who have some kind of physical or mental disability. It could be anything varying from cerebral palsy to seizures to trisomy-21 to a child with Autism Spectrum Disorder to name a few. I see them for a short time in my exam room, and I try to imagine how difficult it sometimes (or always?) must be for the families. But nobody could summarize it better nor put it in a list better than Amy Kelly, mom of Annie who was diagnosed with Autism Spectrum Disorder when she was 2 years old. What Amy has written in 18 points is so clear and conveys beautifully what a parent of a child with a disability experiences every day. Would it not be great to include a copy of this 18-item list for every new medical graduate along with their diploma?
I am posting her “18 Things Parents Want Providers to Remember”. It is an eye-opener for any healthcare provider who sees children with any form of disability as well as any family member or friend of these kids.
18 Things Parents Want Providers to Remember
*Written by Amy Kelly, mother to Danny, Annie and Ryan Kelly, Devereux PA Director of Family Services, LEND Fellow – Children’s Hospital of Philadelphia & Autism Speaks Autism Treatment Network National Family Advisory Co-Chair”
1. No parent wants their child to have a disability.
2. We are doing the best we can. This is really hard painful work. It is hard to see our children suffering and not able to understand the world like most people do.
3. We are experts on our children.
4. We know them very well. Listen to us.
5. Don’t promise us things you can’t provide, or promise us that others will provide them.
6. It is hard to tell our story to the outside world. Be gentle with us.
7. We are grieving for lost hopes, dreams and ideals that haven’t or won’t be reached.
8. We are tired and sleep deprived. We are exhausted.
9. We are isolated. There aren’t many people who understand, and if they do, they are tired too.
10. Don’t ask us to tell our story in front of our children.
11. We carry a huge burden as the reporter of what is happening with our child.
12. If you say you will call us, call us. If we leave a message, call us back.
13. We will often compromise more than we should.
14. We are competent from experience.
15. Don’t finish our thoughts and sentences. Don’t assume you know what we feel. Please take the time to ask us and let us talk.
16. Don’t forget that this makes us incredibly sad. We are grieving.
17. Experiences like raising a child with a disability means we find out who our real friends and supports are. It means we often have to grieve the loss of someone who we thought was there to support us.
18. Boundaries are critical to observe.