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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Cost: Free

Where:
Online
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Sponsor: Engage Art Contest
Telephone: 980-999-1447
Contact Name: Ranika Chaney
Website »

More information

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Cost: Varies depending on camp week

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
View map »


Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
Website »

More information

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Cost: Varies depending on week of camp

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
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Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
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Cost: $11

Where:
Downtown
500 S Salisbury St
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More information

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Cost: $70/month

Where:
Hope Community Building
2080 E Williams St
Hope Community Building, Fuquay Varina Room
Apex/Holly Springs, NC  27539
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Telephone: 191-990-25432
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More information

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Cost: FREE!

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Telephone: 919-234-7169
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Cost: See website for fees

Where:
Downtown Raleigh
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Show More...
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Cost: Free

Where:
Online
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View map »


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More information

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Cost: Varies depending on camp week

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JC Raulston Arboretum
4415 Beryl Rd
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View map »


Sponsor: JC Raulston Arboretum
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Website »

More information

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Cost: Varies depending on week of camp

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4415 Beryl Rd
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View map »


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More information

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Cost: $11

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View map »


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More information

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Where:
Lake Crabtree County Park
1400 Aviation Pkwy.
Morrisville, NC  27560
View map »


Sponsor: Lake Crabtree County Park
Telephone: 919-460-3355
Contact Name: Carol Cunningham
Website »

More information

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The Engage Art Contest is a juried competition for original Visual Art, Music Video, Film and Performing Arts. The topic is the Spiritual Battle described in Ephesians 6:10-20 and related...

Cost: Free

Where:
Online
PO Box 78951
Charlotte, NC  28271
View map »


Sponsor: Engage Art Contest
Telephone: 980-999-1447
Contact Name: Ranika Chaney
Website »

More information

Amongst the ancient oak trees is the heart of Raleigh. We'll help you see the forest for the trees and all its magic splendor. Tourist, local, or new to town, this is a lively small group activity...

Cost: $11

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


Sponsor: Let's Roam
Telephone: 833-202-7626
Contact Name: Kelly
Website »

More information

Summer Garden Camps at the JCRA invite your child to investigate nature during half or full day camps.  Campers tend to the garden, harvest vegetables, catch insects, and create crafts from the...

Cost: Varies depending on week of camp

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
View map »


Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
Website »

More information

Summer Garden Camps at the JCRA invite your child to investigate nature during half or full day camps.  Campers tend to the garden, harvest vegetables, catch insects, and create crafts from the...

Cost: Varies depending on camp week

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
View map »


Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
Website »

More information

Kindermusik is a research-based early childhood curriculum that includes 45-minute classroom lessons with materials and resources that encourages parental involvement . Research has linked...

Cost: $70/month

Where:
Hope Community Building
2080 E Williams St
Hope Community Building, Fuquay Varina Room
Apex/Holly Springs, NC  27539
View map »


Telephone: 191-990-25432
Contact Name: Leigh Hamm
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

I am a mom and retired CPA who is passionate about teaching teens about the high cost of their choices. I teach a fun, interactive "Game of Life meets Dave Ramsey" class that has teens experience...

Cost: $225

Where:
Hope Community Church- Apex
2080 E Williams Street
Apex, NC  27539
View map »


Sponsor: Beyond Personal Finance
Contact Name: Charla McKinley
Website »

More information

Short class advertising for local class   I am a mom and retired CPA who is passionate about teaching teens about the high cost of their choices. I teach a fun, interactive "Game of Life meets...

Cost: $225

Where:
Hope Community Church- Apex
2080 E Williams Street
Apex, NC  27539
View map »


Sponsor: Beyond Personal Finance
Contact Name: Charla McKinley
Website »

More information

Short class advertising for local class   I am a mom and retired CPA who is passionate about teaching teens about the high cost of their choices. I teach a fun, interactive "Game of Life meets...

Cost: $225

Where:
Hope Community Church- Apex
2080 E Williams Street
Apex, NC  27539
View map »


Sponsor: Beyond Personal Finance
Contact Name: Charla McKinley
Website »

More information

We invite all Triangle youth between the ages of 8 thru 17 with a sincere interest in the Performance Art of Magic to join Magic Youth Raleigh! This youth program teaches magic history and theory,...

Cost: $35 per Student

Where:
New Horizons Fellowship
820 E. Williams St.
Apex, NC  27502
View map »


Sponsor: The International Brotherhood of Magicians
Contact Name: Roger Way
Website »

More information

Young children and their families are invited to participate in an interactive program with books, songs, movement, and other early literacy-based activities, carefully selected to engage an...

Cost: Free

Where:
Cameron Village Regional Library
1930 Clark Avenue
Raleigh, NC  27605
View map »


Sponsor: Wake County Public Libraries

More information

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The Engage Art Contest is a juried competition for original Visual Art, Music Video, Film and Performing Arts. The topic is the Spiritual Battle described in Ephesians 6:10-20 and related...

Cost: Free

Where:
Online
PO Box 78951
Charlotte, NC  28271
View map »


Sponsor: Engage Art Contest
Telephone: 980-999-1447
Contact Name: Ranika Chaney
Website »

More information

Forget tourist-filled museums, make your own memories with a photo scavenger hunt tour in Raleigh! On a Let’s Roam scavenger hunt, you and your team will work together to wander throughout...

Cost: $11

Where:
500 S Salisbury St
raleigh, NC  27601
View map »


Sponsor: Let's Roam
Website »

More information

Summer Garden Camps at the JCRA invite your child to investigate nature during half or full day camps.  Campers tend to the garden, harvest vegetables, catch insects, and create crafts from the...

Cost: Varies depending on week of camp

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
View map »


Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
Website »

More information

Summer Garden Camps at the JCRA invite your child to investigate nature during half or full day camps.  Campers tend to the garden, harvest vegetables, catch insects, and create crafts from the...

Cost: Varies depending on camp week

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
View map »


Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
Website »

More information

Amongst the ancient oak trees is the heart of Raleigh. We'll help you see the forest for the trees and all its magic splendor. Tourist, local, or new to town, this is a lively small group activity...

Cost: $11

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


Sponsor: Let's Roam
Telephone: 833-202-7626
Contact Name: Kelly
Website »

More information

Kindermusik is a research-based early childhood curriculum that includes 45-minute classroom lessons with materials and resources that encourages parental involvement . Research has linked...

Cost: $70/month

Where:
Hope Community Building
2080 E Williams St
Hope Community Building, Fuquay Varina Room
Apex/Holly Springs, NC  27539
View map »


Telephone: 191-990-25432
Contact Name: Leigh Hamm
Website »

More information

The Community Farm at Chestnut Ridge + Growga are excited to offer outdoor yoga classes this spring!   The Little Sprouts Growga program is for ages 2-5. They learn basic mindfulness elements...

Cost: $150

Where:
The Community Farm at Chestnut Ridge
2902 Mt. Willing Road
Efland, NC  27243
View map »


Sponsor: The Community Farm at Chestnut Ridge
Telephone: 919-304-2178
Contact Name: Erica Romkema
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

We invite all Triangle youth between the ages of 8 thru 17 with a sincere interest in the Performance Art of Magic to join Magic Youth Raleigh! This youth program teaches magic history and theory,...

Cost: $35 per Student

Where:
New Horizons Fellowship
820 E. Williams St.
Apex, NC  27502
View map »


Sponsor: The International Brotherhood of Magicians
Contact Name: Roger Way
Website »

More information

Young children and their families are invited to participate in an interactive program with books, songs, movement, and other early literacy-based activities, carefully selected to engage an...

Cost: Free

Where:
Cameron Village Regional Library
1930 Clark Avenue
Raleigh, NC  27605
View map »


Sponsor: Wake County Public Libraries

More information

The park comes alive after dark! Let the moon guide your way as we stroll around the pond in search of these night-time critters. Play fun games and try to catch some nocturnal bugs! Don't forget a...

Cost: FREE. Registration required for everyone; children must have adult accompaniment

Where:
Crowder County Park
4709 Ten-Ten Rd
Apex, NC  27529
View map »


Telephone: 919-662-2850
Website »

More information

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The Engage Art Contest is a juried competition for original Visual Art, Music Video, Film and Performing Arts. The topic is the Spiritual Battle described in Ephesians 6:10-20 and related...

Cost: Free

Where:
Online
PO Box 78951
Charlotte, NC  28271
View map »


Sponsor: Engage Art Contest
Telephone: 980-999-1447
Contact Name: Ranika Chaney
Website »

More information

Forget tourist-filled museums, make your own memories with a photo scavenger hunt tour in Raleigh! On a Let’s Roam scavenger hunt, you and your team will work together to wander throughout...

Cost: $11

Where:
500 S Salisbury St
raleigh, NC  27601
View map »


Sponsor: Let's Roam
Website »

More information

  Meet at the Waterwise Garden (first parking lot on right) Join our bird enthusiast, Vernon, for an easy walk while looking and listening for our feathered friends. Discover...

Cost: FREE

Where:
Lake Crabtree County Park
1400 Aviation Pkwy.
Morrisville, NC  27560
View map »


Sponsor: Lake Crabtree County Park
Telephone: 919-460-3355
Contact Name: Carol Cunningham
Website »

More information

Summer Garden Camps at the JCRA invite your child to investigate nature during half or full day camps.  Campers tend to the garden, harvest vegetables, catch insects, and create crafts from the...

Cost: Varies depending on week of camp

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
View map »


Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
Website »

More information

Summer Garden Camps at the JCRA invite your child to investigate nature during half or full day camps.  Campers tend to the garden, harvest vegetables, catch insects, and create crafts from the...

Cost: Varies depending on camp week

Where:
JC Raulston Arboretum
4415 Beryl Rd
Raleigh, NC  27606
View map »


Sponsor: JC Raulston Arboretum
Telephone: (919) 513-7011
Contact Name: Elizabeth Overcash
Website »

More information

PARENTS JOIN OUR DHHS APPROVEDCPR/AED & First Aid Certification ClassesFoster parents are required to be CPR & First Aid certified. Parents, bring your child to class with you. Children 10 years...

Cost: 50-80

Where:
Holly Springs, NC
1001 Silverstone Way
Holly Springs, NC  27540
View map »


Sponsor: Save A Life Now Training Center LLC
Telephone: 919-215-6942
Contact Name: Valentina Cordoba
Website »

More information

Amongst the ancient oak trees is the heart of Raleigh. We'll help you see the forest for the trees and all its magic splendor. Tourist, local, or new to town, this is a lively small group activity...

Cost: $11

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


Sponsor: Let's Roam
Telephone: 833-202-7626
Contact Name: Kelly
Website »

More information

PARENTS JOIN OUR DHHS APPROVEDCPR/AED & First Aid Certification ClassesFoster parents are required to be CPR & First Aid certified. Must register in advance. Space is limited. Parents, bring your...

Cost: 50-80

Where:
Holly Springs, NC
1001 Silverstone Way
Holly Springs, NC  27540
View map »


Sponsor: Save A Life Now Training Center LLC
Telephone: 919-215-6942
Contact Name: Valentina Cordoba
Website »

More information

Enjoy a wonderful springtime Brunch with the Bunny and photo op on Saturday, April 4, 2020 at Patterson Farm Market & Tours. Our Brunch with the Bunny is always a popular event! Tickets must be...

Cost: Ages 2 – 6: $10.00 includes tax Ages 6 – 12: $12.00 includes tax Ages: 13 – 54

Where:
Patterson Farm Inc. Market and Tours
10390 Caldwell Road
Mount Ulla, NC  28125
View map »


Sponsor: Patterson Farm Inc. Market and Tours
Telephone: 704-636-4005
Contact Name: Megan Hedrick
Website »

More information

Opportunities to explore all 4 levels of the mill don’t happen often! Learn the history of milling in North Carolina, test your mill trivia, and discover what interesting machinery is preserved...

Cost: $10/Adult; $8/Senior (ages 60+); $6/Child (ages 10-16);Registration is required

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


Telephone: 919-856-6675
Website »

More information

Beavers are such busy creatures and have many unique features that allow them to survive in their aquatic world. Learn about their special adaptations through our "Build a Beaver" program then walk...

Cost: Free

Where:
Harris Lake County Park
2112 County Park Dr.
New Hill, NC  27562
View map »


Sponsor: Harris Lake County Park
Telephone: 919-387-4342
Contact Name: Joanne St. Clair
Website »

More information

Join us for an egg-cellent time on the farm Saturday, April 4 & 11,  2020 from 10 a.m. – 5 p.m. Explore the farm while you hunt for eggs and enjoy spring farm fun activities. Search for 12...

Cost: $10.00 for Hunters $7.00 for Non-Egg Hunters $6.00 for Non-Egg Hunters Senior (A

Where:
Patterson Farm Inc. Market and Tours
10390 Caldwell Road
Mount Ulla, NC  28125
View map »


Sponsor: Patterson Farm Inc. Market and Tours
Telephone: 704-636-4005
Contact Name: Megan Hedrick
Website »

More information

Kindermusik is a research-based early childhood curriculum that includes 45-minute classroom lessons with materials and resources that encourages parental involvement . Research has linked...

Cost: $70/month

Where:
Hope Community Building
2080 E Williams St
Hope Community Building, Fuquay Varina Room
Apex/Holly Springs, NC  27539
View map »


Telephone: 191-990-25432
Contact Name: Leigh Hamm
Website »

More information

The Town of Holly Spring's annual spring event, Spring Fling, is taking on a new location that has a nice ring to it. This year’s Spring Fling at Ting! will take place on Saturday, April 4 from...

Cost: FREE

Where:
Ting Park Baseball Stadium
1151 N. Main St.
Holly Springs, NC  27540
View map »


Sponsor: Town of Holly Springs
Contact Name: Rachel Downey

More information

Many wildflowers bloom in spring.  Join us for a leisurely hike through our fields and woods as we learn to recognize some blooming beauties and appreciate their stories. Age: 5yrs. and up;...

Cost: $2

Where:
Annie Louis Wilkerson. MD Nature Preserve Park
5229 Awls Haven Dr
Raleigh, NC  27614
View map »


Telephone: 919-996-6764
Contact Name: Bryan England
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 (60+ yrs), $3/Child (7-16yrs), Free/Child (6yrs & younger)

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


Telephone: 919-856-6675
Website »

More information

Bring the whole family for this fun interactive Growga family class. Siblings and parents come together for a fun Growga hour, combining elements of our Little Sprouts and Growga Kids programs...

Cost: $150

Where:
The Community Farm at Chestnut Ridge
2902 Mt. Willing Road
Efland, NC  27243
View map »


Sponsor: Chestnut Ridge Camp & Retreat Center
Telephone: 919-304-2178
Contact Name: Erica Romkema
Website »

More information

We invite all Triangle youth between the ages of 8 thru 17 with a sincere interest in the Performance Art of Magic to join Magic Youth Raleigh! This youth program teaches magic history and theory,...

Cost: $35 per Student

Where:
New Horizons Fellowship
820 E. Williams St.
Apex, NC  27502
View map »


Sponsor: The International Brotherhood of Magicians
Contact Name: Roger Way
Website »

More information

Young children and their families are invited to participate in an interactive program with books, songs, movement, and other early literacy-based activities, carefully selected to engage an...

Cost: Free

Where:
Cameron Village Regional Library
1930 Clark Avenue
Raleigh, NC  27605
View map »


Sponsor: Wake County Public Libraries

More information

Garner Sports League Opening Day Ceremony will be held at South Garner Park at 9am on Saturday April 4, 2020.  Come join us as we kick off the Spring season for recreational baseball, fast-pitch...

Cost: 0.00

Where:
South Garner Park
1210 Poole Drive
Garner, NC  27529
View map »

More information

Topper the Bunny can’t wait to see you at the 5th Annual Egg-ceptional Egg Hunt at Hubb’s Farm in Clinton, NC, features age-appropriate egg hunts with a grand finale airplane egg drop at 3pm...

Cost: 10

Where:
Hubb's Farm
10276 US HWY 421 N
Clinton, NC  28328
View map »


Sponsor: Hubb's Farm
Telephone: 910-564-6709
Contact Name: Tammy Peterson
Website »

More information

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