Special Needs Parenting and Your Role as Advocate

Trust your instincts and seek second opinions when needed


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Assessments, doctors, specialists and treatment programs — parents of a special needs child must navigate a complicated world. It can be daunting, but experts say two principles can ease the process.

The first is advocating for the child. Parents need to be their child’s first and foremost case manager.

“We tell parents that they know their child,” says Jill Lorenzi, a clinical associate at the Duke University Center for Autism and Brain Development in Durham. “Trust your instincts, be motivated to help your child the way you see fit. Parents need to be empowered.”

Lorenzi says the Duke University Center for Autism and Brain Development can be an educational advocate for special needs children. “We are more versed in the legal system; what children are legally entitled to from the state and the school system,” she says.

Pleas Geyer, a psychiatrist, works with the Child and Family Development organization in Charlotte. The group’s focus is to maximize the potential of every child with a holistic approach to therapy.

Geyer says once a school-aged child with special needs is identified and assessed, parents need to make sure the Individualized Education Program set up by a school is followed.

“Oftentimes, if a school sees the child and thinks they might be strong in a single subject, that’s a reason to put them in a classroom with students of the same physical age, not the developmental age,” he says. “For example, an 8-year-old with the brain development of a 4-year-old will not thrive in a regular classroom. He or she will be left out of interacting with the class and not [be] able to participate equally.”

Geyer says the goal of a developmentally disabled child should be to live an independent adult life, if possible.

 

Seeking a Second Opinion

The other principle that may help parents of special needs children is seeking a second opinion.

According to Dennis Allen, CEO of Hattie Larlham Center for Children with Disabilities, parents should seek a second opinion on their child’s needs.

“Do not be afraid to ask for what you think is best for your child, even if it conflicts with a professional’s suggestion.” — Dennis Allen

“This is your child’s development and future,” Allen says. “Even though you may love your pediatrician and trust his or her opinion, another assessment of your child from a different pediatrician will give you more knowledge and peace of mind that you are addressing your concern. Do not be afraid to ask for what you think is best for your child, even if it conflicts with a professional’s suggestion.”

Lorenzi and Geyer both say seeking a second opinion can be helpful for parents who want to clarify their child’s initial diagnosis and determine where to go to next.

But a second opinion may only be a snapshot of a point in time. Kim Shufan, executive director of the iCan House in Winston-Salem, an organization that offers programs that teach and coach youths and adults with social challenges, cautions that special needs children, especially those on the autism spectrum, may mask their behavior at a doctor’s visit.

“When you go to seek a second opinion, that’s just one glimpse in time for your child,” Shufan says. “They can behave very well, and then come home and have a meltdown. … Home is the safest place where they can be themselves. A second opinion is just an opinion.”

 

How Advocate for Your Special Needs Child

Know your limitations and bring backup. Advocating for a child with special needs can be demanding, so know your strengths and weaknesses. Pay attention to those weaker areas and find others who can help you. Bringing in other experts shows you have support and a community behind you. You are a force (a kind, thoughtful and polite force, but a force nonetheless) to be reckoned with.

Know your rights. Special needs children have certain rights and protections under the Americans with Disabilities Act. Schools are legally required to provide your child with appropriate and adequate instruction.

Investigate. Asking questions is the key to your child’s welfare. Questions show teachers, administrators, therapists and doctors that you are plugged into your child’s care.

Don’t abdicate your power. You spend more time with your child than anyone. Your child is most comfortable with you, and you see your child in more situations than anyone else, so trust your understanding of your child and protect your power as the expert. Do not be afraid to ask for what you think is best for your child.

Become friendly with teachers and other professionals. Make friends with the professionals and teachers in your child’s circles. When you see them, smile and get to know them.

Anne Wooten Green is a freelance writer from Winston-Salem.

Sources: mom.me and Duke University School of Medicine.

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November 2017

Step back in time with a 19th-century costumed interpreter and watch the millstones at work grinding corn into meal. Registration encouraged online. Tickets available at the...

Cost: $5/adult, $3 ages 7-16. Free for ages 6 and younger

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


Telephone: 919-856-6675
Website »

More information

Celebrate the wonderful world of exotic animals and reptiles. Enjoy live specimens, presentations, raffles, vendors and much more. Purchase tickets online.  

Cost: $12 ages 13 and older, $5 ages 5-12.

Where:
N.C. State Fairgrounds, Kerr Scott Building
1025 Blue Ridge Rd.
Raleigh, NC
View map »


Website »

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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
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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
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Sponsor: Mindful Families of Durham
Contact Name: Adam, Laura, Josh, Sumi
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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
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Sponsor: Babies On The MOVE
Contact Name: Rebecca Quinones
Website »

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Kicks off the holiday season with local art, music, food, and family activities at various locations in Durham’s historic downtown district. Presented by the Durham Arts Council with support...

Cost: Free and open to the public.

Where:
Downtown Durham
120 Morris St.
Durham, NC  27701
View map »


Sponsor: Durham Arts Council
Telephone: 919-560-2719
Contact Name: Susan Tierney
Website »

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

Cost: $8/resident, $10/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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Celebrate the natural world and where favorite Thanksgiving foods come from. Make a craft. All ages with adult. Register online.

Cost: $1/person

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

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Search the preserve for hidden holiday-themed clues and learn about native wild turkeys. Make a turkey decoration. Ages 5 and older with parent. Register online. Choose course code...

Cost: $1/person

Where:
Horseshoe Farm Nature Preserve
2900 Horse Shoe Farm Rd.
Wake Forest, NC
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Website »

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Search for salamanders, owls and more. Ages 10-13. Register online.

Cost: $12/resident, $16/nonresident

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

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Park West Village hosts Winter Wonderland in the District. This year’s event will take place the weekend of November 17th. Take the family to enjoy train rides, magical winter lights, live...

Cost: Free; $5 donation for sledding

Where:
Park West Village
3400 Village Market Place
Morrisville, NC  27560
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Telephone: 919-234-6710
Contact Name: Conner Dixon
Website »

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See ponies, hunters and jumpers compete in an event that benefits Duke Children's Hospital. Visit the website for hours and fees.

Cost: See website for fees

Where:
Gov. James B. Hunt Horse Complex
4601 Trinity Rd.
Raleigh, NC
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Website »

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Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Make crafts celebrating turkeys. All ages with adult. Meet at the Cardinal Shelter. Registration not required. 

Cost: Free

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

More information

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Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Kids ages 6 and younger enjoy stories. Take part in an optional arts and crafts session after storytime for $5.

Cost: Free

Where:
Read With Me Book Shop
111 E. Hargett St., $110
Raleigh, NC  27601
View map »


Website »

More information

Learn what it was like to be a kid at the first Thanksgiving. Play games and make a food collage. Choose either the 10:30-noon and 2-3:30 p.m. session. Ages 7 and older. Register online.

Cost: $6/child

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

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Toddler Time is a special time for ages 5 and younger to bounce under the supervision of their parents, and without interference from the big kids. Purchase tickets online.

Cost: $7-$10

Where:
Sky Zone Durham
1720 Guess Rd., Ste. 90
Durham, NC  27701
View map »


Website »

More information

Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Explore the woods and shoreline for signs of nature and collect treasures to make a craft. Take a full water bottle, snack and a bag lunch. Ages 6-11. Meet at the Cypress Shelter. Advance...

Cost: $16/child

Where:
Harris Lake County Park
2112 County Park Dr.
New Hill, NC  27562
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Sponsor: Harris Lake County Park
Telephone: 919-387-4342
Contact Name: Jackie Trickel
Website »

More information

Kids ages 6 and younger enjoy stories. Take part in an optional arts and crafts session after storytime for $5.

Cost: Free

Where:
Read With Me Book Shop
111 E. Hargett St., $110
Raleigh, NC  27601
View map »


Website »

More information

Listen for the sound of silver bells and climb aboard in your pajamas for a first-class journey on the Polar Express. Come early to meet Santa and enjoy kid-friendly activities and a traditional...

Cost: $14-$29

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


Website »

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Athletes improve their flexibility, balance, joint mobility, as well as body and breath awareness. Special attention will be paid to core strength and posture and its importance in performance and...

Cost: Call for fees

Where:
Little Guru Kids Yoga and Creative Arts
215 Glenwood Avenue, Suite A
Raleigh, NC  27603
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Sponsor: Little Guru Kids Yoga
Telephone: 919-345-5873
Contact Name: Jen Bluestone
Website »

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Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Show More...
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Celebrate what you're thankful for. Play a game and make a pine cone turkey craft. All ages with adult. Drop-in program. Registration not required.

Cost: Free

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


Telephone: 919-856-6675
Website »

More information

Shop more than 20 local vendors offering amazing gifts this holiday season. Enjoy daily raffles with proceeds benefiting local animal rescue Paws in the City. Kids can enjoy crafts...

Cost: Free

Where:
Cary Crossroads
333 Crossroads Blvd
Cary, NC  27518
View map »


Website »

More information

Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

A wonderfully kid-paced hour featuring music, play and dancing with toddler stars singing on the mic at Cotton's gently amplified & participatory music show. Children delight in...

Cost: Free with admission

Where:
Pump It Up Raleigh
10700 World Trade Blvd, #112
Raleigh, NC  27617
View map »


Sponsor: Pump it Up
Telephone: 919-828-3344
Contact Name: Owner/manager Kellie Paterson McHugh
Website »

More information

Read the story by Karma Wilson and make a Thanksgiving-themed craft. All ages. Registration not required.

Cost: Free

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


Telephone: 919-856-6675
Website »

More information

See a contemporary re-imagination of Tchaikovky's timeless music. Purchase tickets online.

Cost: $35-$55

Where:
Durham Performing Arts Center
123 Vivian St.
Durham, NC  27701
View map »


Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

See a contemporary re-imagination of Tchaikovky's timeless music. Purchase tickets online.

Cost: $35-$55

Where:
Durham Performing Arts Center
123 Vivian St.
Durham, NC  27701
View map »


Website »

More information

Catch this comedy classic on the big screen—as the symphony plays the charming and delightful score by John Williams live. Purchase tickets online.

Cost: $14-$29

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


Website »

More information

Show More...
Show Less...

Fit & Able Productions presents the Turkey Chase trail festival at Umstead Park. Take part in a 5K, 10K or 20K. After the race, enjoy fruit, brownies and other...

Cost: $25-$45

Where:
Umstead Park
8801 Glenwood Ave.
Raleigh, NC  27617
View map »


Sponsor: Fit and Able Productions
Telephone: 919-673-4689
Contact Name: Travis
Website »

More information

Celebrate what you're thankful for. Play a game and make a pine cone turkey craft. All ages with adult. Drop-in program. Registration not required.

Cost: Free

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


Telephone: 919-856-6675
Website »

More information

Toddler Time is a special time for ages 5 and younger to bounce under the supervision of their parents, and without interference from the big kids. Purchase tickets online.

Cost: $7-$10

Where:
Sky Zone Durham
1720 Guess Rd., Ste. 90
Durham, NC  27701
View map »


Website »

More information

Shop more than 20 local vendors offering amazing gifts this holiday season. Enjoy daily raffles with proceeds benefiting local animal rescue Paws in the City. Kids can enjoy crafts...

Cost: Free

Where:
Cary Crossroads
333 Crossroads Blvd
Cary, NC  27518
View map »


Website »

More information

The Raleigh Boychoir makes an appearance before its big Christmas concert.

Cost: Free

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


Website »

More information

Kids ages 6 and younger enjoy stories. Take part in an optional arts and crafts session after storytime for $5.

Cost: Free

Where:
Read With Me Book Shop
111 E. Hargett St., $110
Raleigh, NC  27601
View map »


Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Take a 30-minute tour to view the main power drive and milling machinery. Tickets available inside the park's visitor center. Online registration encouraged.

Cost: $5/adult, $3 ages 7-16. Free for ages 6 and younger

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


Telephone: 919-856-6675
Website »

More information

Explore the historic nature of Leigh Farm Park with a friendly guide. Venture inside the historic farmhouse while being captivated by tales about life at Leigh Farm throughout the years.

Cost: Free

Where:
Leigh Farm Park
370 Leigh Farm Rd.
Durham, NC  27707
View map »


Sponsor: Durham Parks and Recreation
Telephone: 919-560-1116
Contact Name: Natalya Buckel
Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Catch this comedy classic on the big screen—as the symphony plays the charming and delightful score by John Williams live. Purchase tickets online.

Cost: $14-$29

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


Website »

More information

Show More...
Show Less...
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