10 Helpful Resources for Families with Newly Diagnosed Exceptional Children

10 Helpful Resources for Families with Newly Diagnosed Exceptional Children

Here in the Triangle area of North Carolina, we’re fortunate because we have access to healthcare providers who can catch a learning disability or a neurological, genetic or developmental disorder, at many different stages of our children’s lives. But after the diagnosis, many parents are left wondering: what’s next?

Here are 10 helpful resources that can help your exceptional child, no matter their age.

1. PBS

Everyone’s been saying your kid will do better with a routine, especially since COVID-19 started, and you’re sure they’re right.  But if you hear it one more time, you’re going to rip someone’s hair out, and it might not be your own! Have no fear, Daniel Tiger’s here.  Yes, that’s right: PBS and Daniel Tiger teamed together for a pretty helpful article on how to make those pesky daily schedules (and stick to them).

2. Exceptional Children’s Assistance Center (ECAC)

Although the Exceptional Children’s Assistance Center (ECAC) is based in Davidson, North Carolina (near Charlotte), it has served families across the state of at no charge for the past 40 years. Training, confidential support around IEPs and 504s, as well as a lending library, make up only a few of the resources available through ECAC.

ECAC provides resources for the parents and families of children with exceptionalities. [Source: ECAC]

3. Carolina Institute for Developmental Disabilities (CIDD)

The Carolina Institute for Developmental Disabilities (CIDD) has long been ahead of the curve in research, education and diagnosis of individuals with Developmental Disabilities and Autism. Two of their specialties include working with Augmentative Communication / Assistive Technology for students who need support in those areas. CIDD also provides clinical services to anyone who needs support because of an intellectual and/or developmental disability and a coexisting behavioral, mental health or medical condition.

4. Autism Society of North Carolina (ASNC)

Research has widely shown that, compared to boys, girls are typically diagnosed later with Autism Spectrum Disorder (ASD). No matter the child’s age, the Autism Society of North Carolina’s (ASNC) website has the portal to walk you through some first steps. After clicking a button to receive a welcome packet of resources, a support specialist will reach out to you. In addition, the website gives you links to ASNC’s helpful workshop and webinar on the topic. It’ll also invite you to join the group through their social media links or a local ASNC chapter in your community.  Many local chapters hold coffee hours that have gone virtual to continue supporting families during COVID-19.

5. Town of Chapel Hill Parks and Recreation

The Parks and Recreation Department of Chapel Hill has an extensive recreation and inclusion program adapted to individuals of all ages with disabilities from all over the Triangle area.  It includes a Special Olympics program, a once-a-month Friday night laid-back social Family Fun Night (swimming optional!) and more.  However: most, if not all activities, are on hold due to COVID-19.  As restrictions lift, contact director Marion Kaslovsky, Recreational Therapist, with questions at (919) 968-2790.

Resources North Carolina
The Special Olympics program connects athletes with their community and peers. [Source: Town of Chapel Hill]

6. Little Lobbyists

Little Lobbyists is a national organization that advocates for children with medically complex needs and disabilities. It formed in 2017 behind attempts to protect healthcare access for families in the U.S. Today, they deliver real stories and pictures of medically complex kiddos directly to legislators on Capitol Hill. Talk about making an impact!  Instructions on how families can get involved are on their website.

7. First in Families of North Carolina (FIF of NC)

First in Families of North Carolina (FIF of NC) has a unique mission to support families in their “self-determined wellness goals, by leveraging relationships and resources, and encouraging reciprocity in their communities.” They have served families in North Carolina since 1995 and have local FIF chapters that serve each state county. How? They provide services, obtain resources and encourage community reciprocity. Their website gives more information on how to get help from a local FIF chapter.

8. Beginnings

Beginnings is a Raleigh-based organization that offers services to families with hard-of-hearing (HOH) or deaf children (or HOH/deaf parents with hearing children) aged 0-21. They also support professionals who work with HOH/deaf individuals. Additionally, their website includes information on the related diagnosis, Central Auditory Processing Disorder.

9. Family Support Network of North Carolina (FSNNC)

Family Support Network of North Carolina, operating since 1985, was the brainchild of a pediatrician and a social worker. This network established parent-to-parent support in all 100 counties within North Carolina. Their website offers an ACCESS telephone line for services that have translations in over 200 languages.

10. Arc of NC

The Arc is a nation-wide network that formed in 1950 around disability rights. Shortly Arc’s beginning, its North Carolina chapter was established in 1953.  The Arc provides whole-person-centered services, including housing, guardianship, a community navigator program, supported employment, and a Fetal Alcohol Prevention program. If you’re wondering how the Arc could help you or a family member, consider reaching out to your local Arc chapter.

BONUS RESOURCE: North Carolina News Daily!

Our next EC Family Guide article will have resources for “Twice Exceptional” children (those who have a developmental or medical diagnosis, as well as have been identified as academically gifted), and their families. Because of the future resources coming for North Carolina residents, stay tuned!

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