After everything we’ve been through this year (five life-threatening hospitalizations) I keep thinking about what families need. The answer: It depends on the situation.If the parent is just getting a diagnosis, they need information on the condition and emotional support. The best source I found is Exceptional Parent magazine annual resource guide which lists all the national groups. I called all the organizations listed under kidney disease when my daughter was born and when she was later diagnosed with autism at age 7, it was the first place I looked again-despite the fact that at that point I was an advocate. I felt like we were back at square one and I didn’t know my child. For detailed information including research, databases, literature etc. the Maternal & Child Health Bureau has “Knowledge Paths” on some conditions. If your child has something really unusual, I also highly recommend the National Organization for Rare Disorders. For emotional support, I’ve personally used matching groups like Parent-to-Parent, Friends Health Connection, and Mothers United for Moral Support.
If families are dealing with struggles in the healthcare system, they can contact Family Voices for children with special needs and/or Family-to-Family Health Information Centers. They can help with Medicaid, how to get SSI (supplemental security income), insurance denials, etc. The American Academy of Pediatrics also has a website for families for general health information, including special needs.
If parents are struggling with educational issues, they can contact the Parent Training & Information Center in their state. They can get help with preschool, developing IEPs, afterschool care, and accommodations in other areas like camp.
I also want to mention mental health as an area of concern. This could mean that the child has challenging behaviors or that the parent needs support. Knowing that you need support is actually a sign of strength, not weakness. According to the National Family Caregivers Association, 75% of caregivers have suffered from depression at some time. Families of children with special needs may not see themselves as “caregivers” since all children depend upon their parents. But are other parents doing all the things you do? How many of them are still diapering their 5 year olds or giving them babyfood? That’s when I realized I had an extra role. How many families will be doing this for their child’s lifetime? I’m not saying this to be negative but so that parents realize they wear an extra “hat” as a caregiver, not just mom or dad, and they need more resources. During hospitalizations, the hospital social workers can help families deal. The National Alliance on Mental Illness has helplines, speakers, and classes for families. Also support groups can be extremely helpful.
I can’t tell you how many families I saw crying in the hallways of the hospital over the months and even though my own daughter was in ICU, actually coded, and was resuscitated several times, I kept wishing there was something I could do to help without invading their limited privacy. It is my hope that Hopeful Parents reaches some of them out there.
Resources (all free except the magazine)
Exceptional Parent magazine www.eparent.com
Maternal & Child Health Bureau www.mchlibrary.info/knowledgepaths
National Organization for Rare Disorders www.rarediseases.org/rare-disease-information/rare-diseases
Friends Health Connection http://friendshealthconnection.org
Mothers United for Moral Support http://www.netnet.net/mums/database.htm
Family Voices (children with special needs) www.familyvoices.org
Family-to-Family Health Information Centers www.familyvoices.org/f2f-grantees
American Academy of Pediatrics (family site) www.healthychildren.org
Parent Training and Information Centers www.parentcenternetwork.org
National Alliance on Mental Illness www.nami.org
National Family Caregivers Association www.thefamilycaregiver.org/improving_caregiving/depression.cfm
Support groups-American Self Help Clearinghouse www.mentalhelp.net/selfhelp