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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Calendar

November 2018

Run Club meets every Sunday at 8 a.m. in Midtown Raleigh or Wake Forest. Stroller friendly; children invited. 

Cost: $10/run or $100/annual pass

Where:
Optimist Park Community Center/Greenways
5900 Whittier Drive
Raleigh, NC  27609
View map »


Sponsor: FIT4MOM
Telephone: 919-348-0472
Contact Name: Missy Currin
Website »

More information

RJR hosts the Sirens from Savannah, Georgia, for a sanctioned junior bout, followed by an adult scrimmage. Doors open at 9:30 a.m. Allstar bout begins at 10...

Cost: $7 at the door. Free for kids 3 and younger

Where:
United Skates of America
2901 Trawick Rd.
Raleigh, NC  27604
View map »


Sponsor: RJR
Telephone: 919-438-6066
Contact Name: Maureen Fennell
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Take part in a class that teaches individualized ways to foster motor development for your child. Learn about tummy time alternatives, best positions for your baby, how to help your child learn to...

Cost: $18

Where:
Open Arts
1222 Copeland Oaks Dr.
Morrisville, NC  27560
View map »


Sponsor: Babies On The MOVE
Contact Name: Rebecca Quinones
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
View map »


Sponsor: Mindful Families of Durham
Contact Name: Adam, Laura, Josh, Sumi
Website »

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Take part in a class that teaches individualized ways to foster motor development for your child. Learn about carry positions, best positions for your baby, how to help your child learn to crawl,...

Cost: $18

Where:
Open Arts
1222 Copeland Oaks Dr
Morrisville, NC  27560
View map »


Sponsor: Babies On The MOVE
Contact Name: Rebecca Quinones
Website »

More information

The Durham Art Walk Holiday Market is a festive fine arts and crafts event that kicks off the holiday season in downtown Durham. The Holiday Market invites art lovers of all ages to experience...

Cost: Free

Where:
Durham Arts Council
120 Morris Street
Durham, NC  27701
View map »


Sponsor: Durham Arts Council
Telephone: 919-560-2720
Contact Name: Margaret DeMott
Website »

More information

Join NC State Parks, Recreation and Tourism students and discover how the world around you transitions from fall to winter. From meeting a live snake to creating a fall craft, participants will...

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

Visit the display table to learn about this fall tradition and make a corn husk doll to take home. All ages.

Cost: Free

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

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Tour the farm, spend time with farmers who care about the environment and meet friendly animals. Tickets must be purchased online; the farm is not open for drop-ins.

Cost: $10/person

Where:
Hux Family Farm
1923 Shaw Rd.
Durham, NC  27704
View map »


Website »

More information

Join harpist extraordinaire Laura Byrne as she and several of her students, Kate Twiss (8th grade) and Jocelyn Bowns (10th grade), serenade audiences with beautiful...

Cost: Free

Where:
Sarah P. Duke Gardens - Kirby Horton Hall
420 Anderson St
Durham, NC  27708
View map »


Sponsor: Mallarme Chamber Players
Telephone: 919-560-2788
Contact Name: Suzanne Rousso
Website »

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Walk back in time with a park naturalist to learn about the original Americans. Discover edible and medicinal plants. Play games like Native American children and make a fun craft. All ages with...

Cost: $1/person

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

More information

Participants develop their naturalist skills and understanding of local nature. Ages 5-8 with parent. Register online. Choose course #117109.

Cost: $8/resident, $10/nonresident

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


Telephone: 919-387-5980
Website »

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Enjoy food, inflatables, games and prizes (for adults and kids), a silent auction and a haunted house.  Cost: $5 ($3 for kids 6 and younger) Concessions and the haunted house...

Cost: $5 ($3 for kids 6 and younger)

Where:
The School for Creative Studies
5001 Red Mill Road
Durham, NC  27704
View map »


Sponsor: The School for Creative Studies PTSA
Telephone: 919-560-3535
Contact Name: School for Creative Studies PTSA
Website »

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The Chamber Orchestra of the Triangle presents a concert featuring UNC’s Carolina Choir. Concert highlights include Samuel Barber’s Prayers of Kierkegaard, Nino Rota’s Bassoon...

Cost: $30/adult, free for children

Where:
Carolina Theatre of Durham
309 W. Morgan St.
Durham, NC  27701
View map »


Website »

More information

Search for owls, salamanders and more. Equipment provided. Ages 10-13. Register online. Choose course #117111.

Cost: $8/resident, $10/nonresident

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


Telephone: 919-387-5980
Website »

More information

Young adults with developmental disabilities enjoy a book club featuring "Harry Potter and the Chamber of Secrets."  The group meets most Sundays at 4:45 p.m.

Cost: Free

Where:
Quail Ridge Books
4209-100 Lassiter Mill Rd.
Raleigh, NC  27609
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Website »

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Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Logs provide great habitat for many animals. Join us as we read Wendy Pfeffer's A Log's Life, explore a real log and create a log craft to take home. For ages 1-6 with accompanying adult. Meet at...

Cost: $4 per child

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

Children with disabilities learn the basics of meal preparation, cooking and clean-up with easy-to-follow recipes. Ages 11 and older. Register online. Choose course #116723.

Cost: $19/resident, $24/nonresident

Where:
Herbert C. Young Community Center
101 Wilkinson Ave.
Cary, NC  27513
View map »


Website »

More information

Children with special needs make gyros, a popular pita wrap. Ages 11 and older. Register online. Choose course #116723.

Cost: $19/resident, $24/nonresident

Where:
Herbert C. Young Community Center
101 Wilkinson Ave.
Cary, NC  27513
View map »


Website »

More information

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Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Learn Sarah Hale's story and make fun Thanksgiving-themed crafts. All ages with adult. Register online. 

Cost: Free

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


Telephone: 919-856-6675
Website »

More information

Ages 11 and older with special needs learn basic outdoor survival skills. Register online. Choose course #116958.

Cost: $10/resident, $13/nonresident

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


Telephone: 919-387-5980
Website »

More information

Show More...
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Ages 6-10 enjoy art and yoga. Register online. 

Cost: $45/child

Where:
Little Guru Kids Yoga and Creative Arts
215 Glenwood Avenue
Suite A
Raleigh, NC  27603
View map »


Sponsor: Little Guru Kids Yoga
Telephone: 919-720-4921
Contact Name: Jen Fisher
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

See Happy Dan perform magic, comedy and more.

Cost: $5/person

Where:
Renaissance Centre
405 Brooks St.
Wake Forest, NC  27587
View map »


Website »

More information

Learn about the first Thanksgiving. Play 17th-century games, learn to talk like a pilgrim and create a first Thanksgiving food collage to take home. Ages 7 and older. Registration required.

Cost: $6/child

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


Telephone: 919-856-6675
Website »

More information

A playful elf, sent by Santa to confirm the naughty and nice list, stumbles upon the best place to find holiday cheer—the North Carolina Symphony! This family fun concert includes music from...

Cost: $28/person

Where:
Meymandi Concert Hall
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

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Take part in a 5K Thanksgiving morning. Proceeds benefit the Wake County Boys & Girls Clubs. Register online. 

Cost: $15-$30

Where:
Downtown Wake Forest
, NC  27587


Website »

More information

Competitive or Recreational 5K at Garner's White Deer Park Thanksgiving morning.  1 Mile option also available Register at https://fsseries.com/event/turkey-day-5k/register/

Cost: $20 - $30

Where:
White Deer Park
2400 Aversboro Road
Garner, NC  27529
View map »


Sponsor: TeddyRox Foundation
Telephone: 919-608-5658
Contact Name: Nancy Cawthon
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Take the family to enjoy the animated movie at Marbles IMAX. Playing November 22-25 only.  See the website for show times and to purchase tickets.

Cost: See website for fees

Where:
Marbles Kids Museum
201 E. Hargett St.
Raleigh, NC  27601
View map »


Website »

More information

Show More...
Show Less...

Ages 6-10 enjoy art and yoga. Register online. 

Cost: $45/child

Where:
Little Guru Kids Yoga and Creative Arts
215 Glenwood Avenue
Suite A
Raleigh, NC  27603
View map »


Sponsor: Little Guru Kids Yoga
Telephone: 919-720-4921
Contact Name: Jen Fisher
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Bring the family out for a fall wagon ride along the back roads of the park to enjoy the fall colors and the beauty of Harris Lake County Park.  Staff will interpret the natural and historical...

Cost: $1 per person

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

The original television classic comes to life! The beloved TV classic soars off the screen and onto the stage this holiday season. See favorite characters Santa and Mrs. Claus, Hermey...

Cost: $15-$50

Where:
Duke Energy Center for the Performing Arts
2 E. South St.
Raleigh, NC  27601
View map »


Sponsor: Duke Energy Center for the Performing Arts
Telephone: 919-886-4591
Contact Name: Box Office
Website »

More information

This class is a chance for adventurous women to get together for a fun-filled workshop where we explore the basics of aerial silks. No need for a background in aerial yoga, this is a workshop...

Cost: $25

Where:
Cary Hot Yoga
952 Kildaire Farm Rd.
Cary, NC  27511
View map »


Sponsor: Cary Hot Yoga
Telephone: 188-858-79530
Contact Name: hoa bui
Website »

More information

Gather the family together for this fun-filled, heartwarming spectacular featuring seasonal favorites plus a sing-a-long, falling snow, and a chorus line of dancing Santas. Visit Santa...

Cost: $35-$65

Where:
Meymandi Concert Hall
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Take the family to enjoy the animated movie at Marbles IMAX. Playing November 22-25 only.  See the website for show times and to purchase tickets.

Cost: See website for fees

Where:
Marbles Kids Museum
201 E. Hargett St.
Raleigh, NC  27601
View map »


Website »

More information

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A Perch, a local coworking space is pleased to announce their annual indoor/outdoor Holiday Handmade Pop-up. The market will showcase a diverse range of work by local makers including,...

Cost: Free

Where:
Perch Studios
106 S. Greensboro St.
Suite E
Carrboro, NC  27510
View map »


Sponsor: Perch Coworking
Telephone: 919 260 5313
Contact Name: Betsey Elbogen

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

The beloved TV classic soars off the screen and onto the stage this holiday season. See favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster,...

Cost: $15-$50

Where:
Duke Energy Center for the Performing Arts
2 E. South St.
Raleigh, NC  27601
View map »


Sponsor: Duke Energy Center for the Performing Arts
Telephone: 919-886-4591
Contact Name: Box Office
Website »

More information

Ages 8 and older 8 learn aerial yoga poses. Great opportunity to have fun for the entire family. No prior aerial yoga experience is required.  24 Hour Pre-registration: $40 one parent+one...

Cost: $40 child+adult or $20/child $25/adult

Where:
Cary Hot Yoga
952 Kildaire Farm Rd.
Cary, NC  27511
View map »


Sponsor: Cary Hot Yoga
Telephone: 188-858-79530
Contact Name: hoa bui
Website »

More information

Celebrate the holiday season with goats, farm animals, a new hay ride and tractor ride, holiday treats and a Christmas Market. Santa will be at the farm on all weekends giving you the perfect...

Cost: $13.50/person

Where:
Spring Haven Farm
5306 Homer Ruffin Rd.
Chapel Hill , NC  27516
View map »


Sponsor: Spring Haven Farm
Telephone: 919.407.1806
Contact Name: Andrew Crihfield
Website »

More information

Take part in a fun and playful aerial yoga and movement class for parents and children age 5 and older. Stretch, move, play and learn aerial yoga poses. Breathing techniques will be taught to...

Cost: $35 child and adult pair, or $15/child and $25/adult

Where:
Cary Hot Yoga
952 Kildaire Farm Rd.
Cary, NC  27511
View map »


Sponsor: Cary Hot Yoga
Telephone: 888-587-9530
Contact Name: hoa bui
Website »

More information

Explore the historic heart of downtown Raleigh on a walking tour of Fayetteville Street. Tours highlight the people, places, architecture and political movements that have shaped...

Cost: Adults (18+) $10; Youth (7-17) $4; Children (6 & under) Free.

Where:
City of Raleigh Museum
220 Fayetteville St.
Raleigh, NC  27601
View map »


Website »

More information

The beloved TV classic soars off the screen and onto the stage this holiday season. See favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster,...

Cost: $15-$50

Where:
Duke Energy Center for the Performing Arts
2 E. South St.
Raleigh, NC  27601
View map »


Sponsor: Duke Energy Center for the Performing Arts
Telephone: 919-886-4591
Contact Name: Box Office
Website »

More information

Gather the family together for this fun-filled, heartwarming spectacular featuring seasonal favorites plus a sing-a-long, falling snow, and a chorus line of dancing Santas. Visit Santa...

Cost: $35-$65

Where:
Meymandi Concert Hall
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Joshual Lozoff combines amazing illusions with mental feats that explore the possibilities of the human mind. All ages. Purchase tickets online.

Cost: $20/person

Where:
The ArtsCenter
300-G East Main St.
Carrboro, NC  27510
View map »


Sponsor: The ArtsCenter
Telephone: 919-929-2787
Contact Name: Patrick Phelps-Mckeown     
Website »

More information

Take the family to enjoy the animated movie at Marbles IMAX. Playing November 22-25 only.  See the website for show times and to purchase tickets.

Cost: See website for fees

Where:
Marbles Kids Museum
201 E. Hargett St.
Raleigh, NC  27601
View map »


Website »

More information

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The 2018-19 Education Guide offers 678 education resources in the Triangle, including area preschools, private schools, public school systems, charter schools, boarding schools, academic resources and an Exceptional Child special section.

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