My Child Just Got Diagnosed-Now What?

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Part 1 of 2

 

Family caregivers need both information and support when their child is diagnosed with a new condition.  There are many reputable resources for parents of child with special needs. 

Good places to start (see Resources) 

 

v  There is an annual resource guide from Exceptional Parent magazine that lists all the national organizations for specific conditions. 

 

v   The Maternal & Child Health Bureau (MCHB) has “Knowledge Paths” on some conditions for more detailed information including research, databases, literature etc.   

 

v  The Parent Center Hub is the new home for information formerly from NICHCY (National Dissemination Center for Children with Disabilities.) 

 

v  The Statewide Parent Advocacy Network (SPAN) has a fact sheet on what to do while waiting for the school’s special education evaluation.

 

 

 

Other good resources on specific conditions           

Ø  Health A-Z – Health Central

            www.healthcentral.com 

Ø  Health Conditions - WebMD

            http://www.webmd.com/ 

Ø  Health Finder

http://www.healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases

            Spanish http://www.healthfinder.gov/espanol/  

Ø  American Academy of Pediatrics-information for families

                         http://www.healthychildren.org/English/health-issues/Pages/default.aspx

Spanish http://www.healthychildren.org/spanish/health-issues/paginas/default.aspx 

Ø  Health Topics  – Medline Plus

             www.nlm.nih.gov/medlineplus/healthtopics.html

            Spanish http://www.nlm.nih.gov/medlineplus/spanish/healthtopics.html 

            Developmental Disabilities – Medline Plus            http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html 

            Disabilities - Medline Plus

            http://www.nlm.nih.gov/medlineplus/disabilities.html 

For Kids Only 

Kids Health has information for families but also for children.  Using this type of information may make it easier for parents to explain the condition to their children.

 

Support for Family Caregivers 

Parent may also want to talk to another parent who has already gone through the same experience.  Trained volunteers are matched with family caregivers of children with the same condition through Parent-to-Parent.  The American Self-Help Clearinghouse also has a listing of support groups nationally. 

 

Family caregivers will feel more empowered once they know more about their child’s condition.   

 

NOTE:  Part 2 will cover rare conditions and where to find reliable information. 

 

Resources

Exceptional Parent magazine-annual resource guide

www.eparent.com 

 

Knowledge Paths-MCHB resources for families

http://www.mchlibrary.info/KnowledgePaths/index.html and resources for families at www.mchlibrary.info/families/index.html 

 

Parent Center Hub-specific disabilities

http://www.parentcenterhub.org/repository/specific-disabilities/

Spanish http://www.parentcenterhub.org/repository/aprendizaje/

 

Statewide Parent Advocacy Network Fact Sheet

http://www.spanadvocacy.org/content/what-do-while-waiting-results-your-childs-evaluation  

 

Kids Health

http://kidshealth.org/kid/health_problems/

Spanish http://kidshealth.org/kid/en_espanol/index.html?tracking=80002_F#cat20289

Parent-to-Parent

http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx 

 

Support Groups

http://search.selfhelpgroups.org/selfhelp/

 

 

Remain Hopeful,

 

Lauren   

 

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.