Lauren Agoratus
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.
Remain hopeful,
Lauren
Resources (all free except the magazine)
Diagnosis
National Organization
for Rare Disorders www.rarediseases.org/rare-disease-information/rare-diseases
Support
Health
Education
Mental Health/Caregiving
National
Family Caregivers Association www.thefamilycaregiver.org/improving_caregiving/depression.cfm
Support
groups-American Self Help Clearinghouse www.mentalhelp.net/selfhelp
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