1. 18 Things Parents Want Providers to Remember
*Written by Amy Kelly, Director of Family & Community Services at Devereux Advanced Behavioral Health, 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 his or her 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 responsibility 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 in a variety of ways.
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.