Wednesday, July 1, 2015

My Child Just Got Diagnosed-Now What?




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

Ø  American Academy of Pediatrics-information for families
                         http://www.healthychildren.org/English/health-issues/Pages/default.aspx

Ø  Health Topics  – Medline Plus

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

            Disabilities - Medline Plus

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
 
Knowledge Paths-MCHB resources for families
 
Parent Center Hub-specific disabilities
 
Statewide Parent Advocacy Network Fact Sheet
 
Kids Health
Parent-to-Parent
 
Support Groups
 
 
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.
 

4 comments:

  1. How Dr Eboehi The Great Spell Caster help Bring Back My Ex Lover: Husband

    Hello My name is Kathie Sherine, Am from USA, Texas. and I am very happy for posting on this blog on how a great spell caster helped me in bringing back the love of my life. I know there are lots of women like me out there who have done so much to have back their Husband, I am here to tell you all to search no further because the answer is right here. I sincerely believe if there are up to five spell casters like Dr Eboehi this world would be a better place, I have seen people complaining on how fake spell castes promised to help them but couldn't but with Dr Eboehi I tell you your problem is solved already. My Husband and I had been apart for 3 YEARS and I couldn't bear without living without him, I have tried everything to have him back but nothing was working until I saw numerous testimonies about a spell caster called Dr Eboehi and how great his work is. I contacted him via email (eboehispellcaster@yahoo.com) immediately and follow the step that he ask and in the next 48 hours my lover called me and was eager for my forgiveness and that he wished nothing more than to have me in his arms forever. I filled so much joy and happiness that I found Dr Eboehi, I hope you all here will find this testimony of mine and get your husband back in just 48 hours thanks... contact his email: eboehispellcaster@yahoo.com or call (208) 627-4749

    ReplyDelete