An Autism Diagnosis Survival Guide

Expert advice for families, from parents who have been there


Published:

Photo courtesy of christa harder

Christa Harder of Charlotte with her three children, two of whom have autism. Her 7-year-old son Nolan, left, was diagnosed in 2013 when Harder was pregnant with now 5-year-old twins Neil and Nora, center and right. Neil was diagnosed with autism two years later. 

Seven-year-old Nolan Harder of Charlotte was always a little different. As a toddler, he would lick the carpet and walls. He’d bang his head on doors. He didn’t speak until well after his peers.

And yet, when Nolan was diagnosed with autism at age 2, his mother Christa says the news still felt staggering.

 “The beginning is awful for anybody,” Harder says. “I felt very alone. People kept saying, he’s just a kid, he’ll grow out of it. But he didn’t. It was like, is my child ever going to talk? Is he ever going to have friends?”

Harder’s experience is common. According to experts at the Autism Society of North Carolina, many parents feel overwhelmed, alone and anxious about the future during the first months after their child is diagnosed with autism.

“It’s like you’re running a gauntlet on a daily basis and it wears you down physically and emotionally,” says David Laxton, director of communications for the Autism Society of North Carolina. “Each person’s experience is different, but you don’t have to feel like you have to figure it out on your own.”

To help, we’ve compiled a few tips.

1. Get a medical diagnosis. A medical diagnosis is critical, says Jill Lorenzi, a medical instructor at the Duke Center for Autism and Brain Development. Not only will a diagnosis pinpoint your child’s needs, but without it, it may be difficult to access many of the services that will help your child most. “We know that individuals with autism learn differently, so focused help for the child’s needs are important,” Lorenzi says.

A comprehensive assessment includes a thorough evaluation of the child’s strengths and weaknesses, as well as screenings for additional medical conditions.

2. Take a breath. “I would say, the first step is to take a deep breath and recognize the freedom that comes with a diagnosis,” says Sara Passey, Apex mother of 12-year-old Max, who has autism. “I know that sounds strange, but when you know what it is, you have an idea of where to go. Getting a diagnosis lets you say, OK. This is a new adventure. Let’s go.”

It’s important to remember that your child is the same individual he or she was before being diagnosed, Laxton advises. Your child will continue to grow and develop, even if it’s at a different pace than his or her peers.

“It is not something that is the end of the world, but you have to pace yourself,” Laxton says. “It’s not a sprint. It’s a marathon.”

3. Start with evidence-based research. “You could spend all day and all night for years and not be able to scratch the surface of what’s out there (regarding autism advice),” Lorenzi says. “When you’re trying to find a few things that will work, it’s quicker to narrow down to evidence-based resources first. Anchor yourself to an organization like Autism Speaks or the Duke Center for Autism (and Brain Development).”

4. Reach out. Remember, you are not alone. Reaching out to other autism parents can be enormously beneficial, says Brenda Candland of Holly Springs, whose son, Franklin, has autism.  

“Find other parents who have children with autism,” she says. “You’re not alone. Even though all autistic children are different, you all share a common goal: You love your child and want what’s best for your child.”

Laxton suggests finding a social media support group for tips and moral support, or connecting with the Autism Society of North Carolina, which offers workshops for parents and grandparents of the newly diagnosed throughout the year.

“Just being able to talk to somebody — to share what your fears are, your questions — having somebody you can talk to who’s been down that path is so much better than googling all night long,” he says.

Photos courtesy of Sara Passey

 Max Passey, 12, was diagnosed with autism when he was almost 2 years old. His mother Sara, also pictured, encourages self-care and celebrating every small victory. 

5. Take care of yourself. Many autism parents say it’s hard for them to find the right way to include self-care in their everyday lives. Some autistic individuals rarely sleep. Others become violently upset by anyone new, making finding a babysitter a distinct challenge.

The idea of “taking some time for yourself” can seem laughably unrealistic, Passey says, but it’s important to try.

“That kid needs you to be your best, and you can only do that if you’re taking care of yourself,” she says. “You don’t have to be removed from the situation. You don’t have to go anywhere. You just have to find something that fills you and give yourself permission to do it.”

Self-care could mean meditating for five minutes, taking the time to eat well, exercising, or writing a quick journal entry. Laxton says he knew one parent who recommended using a paper shredder for stress relief.

“You have to figure out what you can do so that you can be the best parent for your child,” Laxton says.

6. Have hope. “It’s not always doom and gloom,” Harder says. “It might feel that way initially, but it gets better. It’s still hard, and it isn’t fun to see your child struggle, but you figure out how to work around things. You’ll adapt. It does get easier.”

While an autistic child’s developmental process will be different from a neurotypical child’s, she will continue to develop.

“Continue to hope and dream for your child,” Lorenzi says. “You might have to tweak your goals or think about them a little bit differently, but there are so many strengths to be utilized and so many great things about people with autism.”

7. Trust yourself. Since every child with autism is different, you are your child’s best advocate. Your child will respond to some settings or therapies better than others. Trust yourself to know what makes the most sense for you and your child to try.

For Bridget Palys and her daughters Emma and Lily, who both have autism, the online classrooms of North Carolina Virtual Academy made more sense for them than a traditional school.

“With online school, they learn in a comfortable atmosphere where they both absorb their lessons without the distractions they experienced in the traditional school setting,” Palys says.

8. Identify resources. As autism awareness has grown, so have the resources available to families. Find out what’s available in your area, including autism specialists, autism-friendly summer camps, workshops and other information, by visiting autismspeaks.org or autismsociety-nc.org.

Autumn Linford works as a freelance journalist in and around the Triangle. She has a master’s degree in journalism and is the mother of three children, including a son with autism. 

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June 2019

For almost 200 years, farmers brought their wheat and corn to what is now Yates Mill to have their grains ground into flour and meal. Today, you can stop by the Yates Mill visitor center to see a...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675
Website »

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Discover the joys of fishing at Bass Pro Shops with free fishing seminars, kids crafts and more. 

Cost: Free

Where:
Cabela's
201
Cabela Dr.
Garner, NC  27529
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Telephone: 984-204-2200
Contact Name: Tammy Fonda-Quann

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Discover the joys of fishing at Bass Pro Shops with free fishing seminars, kids crafts and more. 

Cost: Free

Where:
Bass Pro Shops
801 Bass Pro Ln.
Cary, NC  27513
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Telephone: 417-413-9368
Contact Name: Todd Foxx
Website »

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Join Mindful Families of Durham, a Buddhist-inspired spiritual community that supports area parents, caregivers, and their children in the practice of mindfulness and the understanding of the...

Cost: Free

Where:
Erwin Road
Durham, NC  27705
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Sponsor: Mindful Families of Durham
Contact Name: Adam, Laura, Josh, Sumi
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Sign up for a Raleigh scavenger hunt and put on your best Nick Cage impression as you seek out the national treasures hidden in Raleigh. Via an app, be guided through the cultural, historical,...

Cost: See website for fees

Where:
Downtown Raleigh
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Sponsor: LetsRoam!
Telephone: 833-202-7626
Contact Name: LetsRoam!
Website »

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It`s 1863 at Yates Mill, and the yard is alive with activity! Step back in time with our 19th-century costumed interpreters and watch the millstones at work grinding corn into meal.  Tour fee:...

Cost: $5/Adult, $4/Senior (ages 60+), $3/Child (ages 7-16), Free/Child (6 - under)

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675
Website »

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Hop, skip, and jump over to Crowder County Park as we celebrate Father’s Day! Bring the whole family out for an afternoon of games related to nature. Afterwards we’ll cool off with some...

Cost: Free

Where:
Crowder County Park
4709 Ten-Ten Road
Apex, NC  27539
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Website »

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Search for salamanders, birds, deer and more. All ages with adult. Register online. Choose course #124938.

Cost: $12/resident, $16/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC
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Telephone: 919-387-5980
Website »

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Practice your recognition skills through sorting, matching, and more! Move like animals in nature and find park critters in a fun scavenger hunt. For ages 18 months - 3 years (with an accompanying...

Cost: Free

Where:
Crowder County Park
4709 Ten-Ten Road
Apex, NC  27539
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Telephone: 919-662-2850
Website »

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Drop by the cybrary for storytime with a librarian. Activity Room 4. Preschool and kindergarten ages. No registration necessary. 

Cost: Free

Where:
Carrboro Cybrary
100 N Greensboro St
Carrboro, NC  27510
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Sponsor: Orange County Public Library
Telephone: 919-918-7387
Contact Name: Cybrary
Website »

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Sign up for a Raleigh scavenger hunt and put on your best Nick Cage impression as you seek out the national treasures hidden in Raleigh. Via an app, be guided through the cultural, historical,...

Cost: See website for fees

Where:
Downtown Raleigh
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Sponsor: LetsRoam!
Telephone: 833-202-7626
Contact Name: LetsRoam!
Website »

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Kids hike, make projects and engage in nature activities. Ages 5-8. Register online. Choose course #124963.

Cost: $9/resident, $12/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC  27518
View map »


Telephone: 919-387-5980
Website »

More information

Kids hike, make projects and engage in nature activities. Ages 5-8. Register online. Choose course #124691.

Cost: $9/resident, $12/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC  27518
View map »


Telephone: 919-387-5980
Website »

More information

Travel 238,900 miles above the earth as we commemorate the 50th anniversary of humans’ first landing on the moon. What's it like to travel in space? With the help of some volunteers, kids...

Cost: Free

Where:
Orange County Main Library
137 W Margaret Ln
Hillsborough, NC  27278
View map »


Sponsor: Orange County Public Library
Telephone: 919-245-2539
Contact Name: Orange County Main Library
Website »

More information

Travel 238,900 miles above the earth as we commemorate the 50th anniversary of humans’ first landing on the moon. What's it like to travel in space? With the help of some volunteers, kids...

Cost: Free

Where:
Orange County Main Library
137 W Margaret Ln
Hillsborough, NC  27278
View map »


Sponsor: Orange County Public Library
Telephone: 919-245-2539
Contact Name: Orange County Main Library
Website »

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Ages 11 and older with special needs stroll through the woods. Register online. Choose course #124383.

Cost: $2/resident, $3/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC  27518
View map »


Website »

More information

Vacation Bible School includes dinner. Register at wpumc.com/vbs

Cost: Free

Where:
White Plains United Methodist Church
313 S.E. Maynard Rd.
Cary, NC  27511
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Sponsor: White Plains UMC
Telephone: 919-467-9394
Contact Name: Michele Vansteen
Website »

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Celebrate our #1 pollinator by learning about the busy bees of Crowder Park. Learn the dances of bees and how they communicate, discover how pollination works, and taste different types of honey....

Cost: Free

Where:
Crowder County Park
4709 Ten-Ten Road
Apex, NC  27539
View map »


Telephone: 919-662-2850
Website »

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Come out to the millpond and fish the old-fashioned way - we'll provide you with a cane pole, tackle, and bait, along with basic instructions and assistance with identifying fish species....

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
Website »

More information

Sign up for a Raleigh scavenger hunt and put on your best Nick Cage impression as you seek out the national treasures hidden in Raleigh. Via an app, be guided through the cultural, historical,...

Cost: See website for fees

Where:
Downtown Raleigh
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Sponsor: LetsRoam!
Telephone: 833-202-7626
Contact Name: LetsRoam!
Website »

More information

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Cost: Free

Where:
East Regional Library
946 Steeple Square Court
Knightdale, NC  27545
View map »


Website »

More information

Vacation Bible School includes dinner. Register at wpumc.com/vbs

Cost: Free

Where:
White Plains United Methodist Church
313 S.E. Maynard Rd.
Cary, NC  27511
View map »


Sponsor: White Plains UMC
Telephone: 919-467-9394
Contact Name: Michele Vansteen
Website »

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Preschoolers (ages 3-5 with accompanying adult) learn about different frogs and toads that live in our area and what they sound like.  Make frog sounds, hop along the park trails and look for...

Cost: $5

Where:
Wilkerson Nature Preserve
5229 Awls Haven Drive
Raleigh, NC  27614
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Sponsor: City of Raleigh Parks, Recreation and Cultural Resources
Telephone: 919-996-6764
Contact Name: Martha Kane
Website »

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Bees are really important in our gardens! Read The Honey Robber and the Bee by Eric Carle and discover the world of bees and honey! Find your fellow bees by following your sense of smell, make a...

Cost: Free

Where:
Crowder County Park
4709 Ten-Ten Road
Apex, NC  27539
View map »


Telephone: 919-662-2850
Website »

More information

Sign up for a Raleigh scavenger hunt and put on your best Nick Cage impression as you seek out the national treasures hidden in Raleigh. Via an app, be guided through the cultural, historical,...

Cost: See website for fees

Where:
Downtown Raleigh
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Sponsor: LetsRoam!
Telephone: 833-202-7626
Contact Name: LetsRoam!
Website »

More information

Enjoy tea time for the whole family. Samples of hot tea, cold tea, and kombucha will be provided, along with games and family fun.

Cost: Free

Where:
IngenuiTea Kombucha Coffee & Tea
514 E Williams St
APEX, NC  27502
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Sponsor: IngenuiTea Brews
Telephone: 919-438-3684
Contact Name: Mark Poole
Website »

More information

Vacation Bible School includes dinner. Register at wpumc.com/vbs

Cost: Free

Where:
White Plains United Methodist Church
313 S.E. Maynard Rd.
Cary, NC  27511
View map »


Sponsor: White Plains UMC
Telephone: 919-467-9394
Contact Name: Michele Vansteen
Website »

More information

Enjoy an out-of-this world space spectacular event. Preschoolers and their families are invited to fly in for space-themed games, crafts, and more. No registration required.

Cost: Free

Where:
East Regional Library
946 Steeple Square Court
Knightdale, NC  27545
View map »


Website »

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Ages 11 and older with special needs enjoy yoga and breathing exercises. Register online. Choose course #125022.

Cost: $9/resident, $11/nonresident

Where:
Bond Park Community Center
801 High House Rd.
Cary, NC  27513
View map »


Website »

More information

Join park staff for an informal fishing experience for the whole family. Bring your own poles or borrow one of ours through the Tackle Loaner Program. Bait and basic instruction are provided. All...

Cost: FREE

Where:
Lake Crabtree County Park
1400 Aviation Pkwy.
Morrisville, NC  27560
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Sponsor: Lake Crabtree County Park
Telephone: 919-460-3355
Contact Name: Carol Cunningham
Website »

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Meet a staff member at the information desk and follow your guide outside to the garden exhibit or into one of the museum galleries. Look around and listen to a history-related story. Ages 3...

Cost: Free

Where:
N.C. Museum of History
5 E. Edenton St.
Raleigh, NC  27601
View map »


Website »

More information

Enjoy giant checkers, giant jenga, bubbles, and special art activities in Downtown Park. All other permanent games (ping pong, bocce ball, chess) will continue to be available.

Cost: Free

Where:
Downtown Park
319 S. Academy St.
Cary, NC  27511
View map »


Website »

More information

Kids ages 6-9 discover the wonders of reptiles that live at the Preserve.  The focus will be hands-on outdoor investigation and the study of living things in their habitat.  In case of...

Cost: $5

Where:
Wilkerson Nature Preserve
5229 Awls Haven Drive
Raleigh, NC  27614
View map »


Sponsor: City of Raleigh Parks, Recreation and Cultural Resources
Telephone: 919-996-6764
Contact Name: Marti Kane
Website »

More information

Parent and child ages 2-5 water plants in the native wildflower gardens. Register online. Choose course #124907.

Cost: Free

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC
View map »


Telephone: 919-387-5980
Website »

More information

Sign up for a Raleigh scavenger hunt and put on your best Nick Cage impression as you seek out the national treasures hidden in Raleigh. Via an app, be guided through the cultural, historical,...

Cost: See website for fees

Where:
Downtown Raleigh
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Sponsor: LetsRoam!
Telephone: 833-202-7626
Contact Name: LetsRoam!
Website »

More information

Join Optimist Aquatic Center as thousands of kids and adults around the world unite for the world's largest swimming lesson. The World's Largest Swimming Lesson will celebrate its 10th...

Cost: Free

Where:
Optimist Aquatic Center
5902 Whittier Dr.
Raleigh, NC  27609
View map »


Website »

More information

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Cost: Free

Where:
East Regional Library
946 Steeple Square Court
Knightdale, NC  27545
View map »


Website »

More information

Vacation Bible School includes dinner. Register at wpumc.com/vbs

Cost: Free

Where:
White Plains United Methodist Church
313 S.E. Maynard Rd.
Cary, NC  27511
View map »


Sponsor: White Plains UMC
Telephone: 919-467-9394
Contact Name: Michele Vansteen
Website »

More information

Show More...
Show Less...

Every year on June 21, we enjoy the most hours of sunlight during the whole year. Discover the science and cultural celebrations behind this special summer day. Make a pretty sun catcher to hang in...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
Website »

More information

What do Historic Yates Mill County Park and the woodland faeries have in common? They both love nature! Take a short walk near the millpond to search for evidence of faeries (sightings are not...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
Website »

More information

Sign up for a Raleigh scavenger hunt and put on your best Nick Cage impression as you seek out the national treasures hidden in Raleigh. Via an app, be guided through the cultural, historical,...

Cost: See website for fees

Where:
Downtown Raleigh
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Sponsor: LetsRoam!
Telephone: 833-202-7626
Contact Name: LetsRoam!
Website »

More information

Enjoy magic, storytelling and origami with Yasu Ishida. Grades K-5.

Cost: Free

Where:
East Regional Library
946 Steeple Square Court
Knightdale, NC  27545
View map »


Website »

More information

Enjoy an indoor/outdoor vendor market with food trucks, coffee, live music outside and plenty of fun for all ages.  

Cost: Free

Where:
Pine State Coffee
1614 Automotive Way
Raleigh, NC  27604
View map »


Sponsor: Raleigh Night Market
Website »

More information

Vacation Bible School includes dinner. Register at wpumc.com/vbs

Cost: Free

Where:
White Plains United Methodist Church
313 S.E. Maynard Rd.
Cary, NC  27511
View map »


Sponsor: White Plains UMC
Telephone: 919-467-9394
Contact Name: Michele Vansteen
Website »

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How many fireflies can you catch? Sign up for an evening of summer fun as we catch and release lightning bugs. Explore what gives them a special glow through hands-on discovery, games, and more!...

Cost: Free

Where:
Crowder County Park
4709 Ten-Ten Road
Apex, NC  27539
View map »


Telephone: 919-662-2850
Website »

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Show Less...

Every year on June 21, we enjoy the most hours of sunlight during the whole year. Discover the science and cultural celebrations behind this special summer day. Make a pretty sun catcher to hang in...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
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This celebration of toys features interactive attractions, vendors, toy experiences and more. Purchase tickets online. 

Cost: $12/person. Free for ages 2 and younger.

Where:
Raleigh Convention Center
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Website »

More information

Learn basic canoeing skills and a bit about the millpond's history, then head out to explore the pond's many features as seen only from the water. Canoes, paddles, and life jackets are provided,...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
Website »

More information

Young homesteaders learn about the importance of animals and pollinators on farms, both historically and today. Visit with animals, and enjoy interactive games, engaging crafts, imaginative face...

Cost: Free

Where:
Duke Homestead State Historic Site
2828 Duke Homestead Rd.
Durham, NC  27705
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Website »

More information

DIY Fest returns with more than 30 artisans and family-friendly activities to support the mission of Durham 150, the anniversary of the incorporation of the City of Durham. 

Cost: Free

Where:
The Scrap Exchange
2050 Chapel Hill Rd.
Durham, NC  27707
View map »


Website »

More information

Sign up for a Raleigh scavenger hunt and put on your best Nick Cage impression as you seek out the national treasures hidden in Raleigh. Via an app, be guided through the cultural, historical,...

Cost: See website for fees

Where:
Downtown Raleigh
500 S. Salisbury St.
Raleigh, NC  27601
View map »


Sponsor: LetsRoam!
Telephone: 833-202-7626
Contact Name: LetsRoam!
Website »

More information

Want to get inside Historic Yates Mill? Join us for a half-hour tour (starting at 1, 1:30, 2, 2:30 or 3 p.m.) to view the main power drive and milling machinery while exploring the mill's history...

Cost: $5/Adult, $4/Senior (ages 60+), $3/Child (ages 7-16), Free/Child (6 - under)

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
Website »

More information

The fair is for women thinking about getting pregnant, currently pregnant, or recently post-partum. Triangle-area organizations will have tables at the fair to share information about resources...

Cost: Free

Where:
NC Cooperative Extension
721 Foster St.
Durham, NC  27701
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Sponsor: March of Dimes/Duke Family Medicine
Telephone: 678-246-9027
Contact Name: Courtney Simpson
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Ages 5-8 embrace science and nature while developing skills and knowledge about the natural world. Register online. Choose course #124927.

Cost: $8/resident, $10/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC
View map »


Telephone: 919-387-5980
Website »

More information

Enjoy all-things blueberry, food trucks, pie-eating contests and more at Vollmer Farms' annual Blueberry Festival. The Back-40 Country Playground will be open and features a...

Cost: $12 advance tickets, $15 at the door. Free for ages 12 and younger

Where:
Vollmer Farm
677 NC Hwy 98 East
Bunn, NC  27508
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Sponsor: Vollmer Farm
Telephone: 919-496-3076
Website »

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Enjoy a movie under the stars and play games at 7:15 before the movie starts. 

Cost: Free

Where:
E. Carroll Joyner Park
701 Harris Rd.
Wake Forest, NC  27587
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Website »

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