Piedmont Parent's 2013 Exceptional Child

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ResouRces foR paRenting childRen with special needs

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2013-14

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Sometimes the best care can come

on four legs

160+Triad resources for

the exceptional child

Speech Therapy• Speech and Language Difficulties

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piedmontparent.com| 2013 exceptional child 1

2 AnimalTherapy Healing mind, body and spirit with the help of four-legged friends

4 EstatePlanning Planning now for peace of mind later

6 TravelingWitha SpecialNeedsChild Tips for planning an amazing adventure

11 TipsforCouples Maintaining a healthy and satisfying marriage when caring for a special needs child

12 Profile:Daniel Asperger’s syndrome

13 Profile:Marcy-Marie Arthrogryposis Multiplex Congenita

14 Profile:Victor Pitt-Hopkins syndrome

16 Profile:Ben Down syndrome

17 Profile:Caleb Septo-Optic Dysplasia

18 Profile:JB Autism

20 FabFindsforthe ExceptionalChild Toys, technology and books for kids and parents

23 TakeAction The importance of early intervention with autism

24 ExceptionalChild ResourceDirectory A comprehensive guide to Triad organizations that assist families with special needs

a publication of

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2013-14

sponsoRed by

AnimAltherApy

Sometimes the best care can come

on four legs

160+Triad resources for

the exceptional child

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Marcy-Marie Cox, 10, photographed on Dusty by Adam Mowery at Victory Junction in Randleman

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Piedmont Parent reserves the right to reject any advertisement or listing that is not in keeping with the publication’s standard. Submissions are welcome, but the publisher assumes no responsibility for the return of unsolicited material. Piedmont Parent does not endorse or assume responsibility for information, products, services or statements made by advertisers or editorial contributors. All rights reserved. Reproduction in whole or in part without written permission from the publisher is prohibited. Copyright 2013 by Carolina Parenting, Inc.

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What’s Inside

2 2013 exceptional child | piedmontparent.com

Pet therapy — a type of therapy that involves animals such as dogs and horses as a form of treatment to improve a patient’s social, emotional or cognitive functioning — has been shown to have not only emotional benefits, but physiologi-cal benefits as well. And the advantages of pet therapy are especially apparent for children with special needs.

Pet project Suzanne Melcher Thompson is a

licensed recreation therapist who helped start the Animal Assisted Therapy Program at Wake Forest Baptist Medical Center in 1999. She now helps to oversee the program that currently includes more that 24 therapy dogs and serves patients in various units of the hospital — from Brenner’s Children’s Hospital to the oncology department to comprehensive inpatient rehabilitation.

Thompson says that one of the greatest benefits of pet therapy simply involves the “opportunity to normalize a hospital environment.” Other benefits, according to Thompson, include the unconditional love humans receive from animals, which can boost self-confidence, and the social skills that are developed through

By Eleanor-Scott Davis

For children with special needs, sometimes the best therapy comes on four legs

AnimAl instincts

Henry David Thoreau said, “It often happens that a man is more humanely related to a cat or dog than to any human being.”

Because of this, people often react to and interact with animals in a completely different way than they do with other people. There is no denying that animals — of all species — have a way of boosting the emotional well-being of people. And, the bene-fits aren’t limited to the happiness you feel when a wagging tail greets you at the door after a long day at work.

Marcy-Marie Cox, 10, photographed with Dusty by Adam Mowery at Victory Junction in Randleman.


interacting with pet therapy animals. In addition, pet therapy is “an opportunity to translate life skills from taking care of animals to other avenues of one’s life, which develops responsibilities,” says Thompson. Patients learn to care for themselves.

So, how does all this translate to your child with special needs? The list of advantages of therapeutic interac-tion between kids with special needs and animals is very long. Benefits can include “encouraging the development of trusting friendships and bonding, decreasing feelings of isolation and alienation and providing opportunities for diversion as a means of pain control management,” says Thompson.

When asked how she would recom-mend getting your special-needs child involved with pet therapy, Thompson’s first suggestion is to “look at sources in the community for possible involvement in equine therapy, a wonderful source to build multiple goals for children and adolescents. Equine therapies have had many positive results for individuals diagnosed with autism.”

Luckily, our area offers multiple opportunities for equine-assisted thera-pies for children with special needs.

Hoofed healersRiverwood Therapeutic Riding

Center in Tobaccoville and Jessie’s Horse Power Garage, a program of Victory Junction in Randleman, both provide professional equine-assisted activities for children with special needs.

“One of the biggest benefits of a

child with special needs riding a horse is that it builds confidence,” says Heather Shew, the barn director and riding instructor at Victory Junction. “To get on a thousand-pound animal and be in control really adds to your self-esteem.”

And, not all of the therapy comes from riding the horses. At Riverwood, much of the therapy is done on the ground with a horse in an arena setting. This allows children to work one-on-one with a horse using non-verbal commu-nication.

“It gives a strong visual connection for the kids to see how their actions affect someone else,” says Laura Pallavi-cini, the program director and an equine instructor at Riverwood.

But the benefits go beyond the psy-chological. Riding horses is an especially wonderful experience for children with physical disabilities. “The movement of a horse’s pelvis actually comes within centimeters of mimicking a human walk for the rider,” says Pallavicini. “So, a child can get out of their wheelchair and on an elevated level, where they are eye to eye with their peers.”

Shew agrees. She recalls the story of a child with spina bifida who came to ride at Victory Junction. The child had walked before but was now wheelchair-bound. After the child’s first ride on a horse, the child exclaimed to his mother that it felt just like walking again. “That’s a powerful thing — to get a kid out of

a wheelchair and onto an animal that walks,” says Shew.

It is obvious from speaking with Shew and Pallavicini that the staff mem-bers at Victory Junction and Riverwood are passionate about their cause. And, it seems, that the love and compassion the staff feel for the children they serve have also worked their way into the hearts of the animals — as if they instinctively know that the child that is riding them, brushing them or feeding them should be treated with a little extra care.

Victory Junction is one of the few riding centers that has the equipment necessary to accommodate children who require a respirator. Once, an emergency situation arose while a child on a respirator was out riding, and staff members were unable to take the boy off of the horse while treatment was being administered. Shew describes the scene as something she had never before witnessed: The horse stayed stoically still, not even daring to twitch away the flies buzzing around its eyes and flanks. Similarly, a child with epilepsy was rid-ing with a group, and suddenly, with-out reason, the child’s horse stopped. Within a minute the child had a seizure.

“Horses kind of have a sixth sense,” says Shew.

In addition to the 20 retired show horses (one of which was the only ani-mal to ever appear on a Wheaties cereal box), Victory Junction has goats, llamas, miniature ponies and even a barn dog. “Animals of all shapes and sizes can really help all children with disabilities,” says Shew.

One of the biggest benefits

of a child with special needs riding

a horse is that it builds confidence.

To get on a thousand-pound ani-

mal and be in control really adds

to your self-esteem.

— Heather ShewVictory Junction

”

“


Proper estate planning is important for any family. It can be challenging, but especially for families with exceptional children who may have special needs. Some children require special care and services, or perhaps will not be able to maintain a job or a household on their own when they are adults. It is impor-tant for the parents or other caregivers to take steps to ensure that the proper care and services will be provided, even when the parents are no longer living.

Financial advisors and attorneys often can help families identify potential problems and solutions, and there are many who have a great deal of experi-ence in the Triad. Families should not feel like their questions and concerns are unique, or that they have to work out things by themselves. There are a wealth of professionals who can provide guidance and assistance. Here are a few things to think about:

Who will care for our child? When parents are providing special

care to a child, the most basic question is “who will provide the needed care when we are gone?” In some families, there are plenty of qualified and will-ing family members who can handle the responsibility. If so, one important task is to think carefully about which family members can fill which roles. In other families, outside help from trust companies (often affiliated with banks or brokerage firms) and other profes-sionals may be required. Attorneys and financial advisors can help families understand how trusts work, when trust departments can be of help and can also help families find other profession-als (such as counselors, therapists and

teachers with special knowledge). They can also explore private and govern-ment programs or financial benefits that might be available to the child.

Once parents have identified who can help, they should make sure estate planning documents are prepared to give the chosen people or entities the legal authority they need. There are a variety of legal documents that may be needed, but some of the most com-mon are a durable power of attorney for finances, a last will and testament, and/or a revocable trust agreement to establish trusts for the child and other-wise govern the disposition of the assets of the parents. When the child has the capacity to sign, durable powers of attor-ney for health care and finance may also be needed.

These documents, and sometimes other legal documents, appoint individ-uals to manage the financial resources available for the child and to make

health-care decisions for him or her. These documents are vital to ensuring that the child’s needs are met without unnecessary court involvement or delays and costs resulting from family dis-agreements concerning the child’s care.

How do we protect the assets we have set aside for our child?

In most cases, families with excep-tional children will want to learn about the benefits of trusts. Trusts allow for the legal control and management of assets by one party, the trustee, (which could be one or more individuals or a trust company) for the benefit of another party — in this case, the exceptional child. In a trust, parents can provide specific direction on how money should be spent for a child, or they can give the trustee broad discretion to decide what and when to make payments on the child’s behalf. Sometimes there are family members or friends who would

By James E. Creamer Jr.

Estate Planning: Who will take care of my child?


Dyslexia: Do fast-paced video games improve reading speed?

Many parents may dislike video games, but a recent study shows some action games may help children with dyslexia.

The study involved 20 children ages 7 to 13 who played a Wii game called Rayman Raving Rabbids. The kids played the game for 12 hours over two weeks, then showed a significant increase in reading speed for up to two months.

“Action video games enhance many aspects of visual attention, mainly improving the extraction of informa-tion from the environment,” said Andrea Facoetti of the University of Padua in Italy.

Kids in the comparison group played games that did not require the participants constantly scan chaotic scenes and did not show an increase in reading speed.

“Dyslexic children learned to orient and focus their attention more efficiently to extract the relevant infor-mation of a written word more rapidly,” said Facoetti.

— Shannon Koontz

be great choices to provide personal care to a child, but who might not be wise choices to serve as trustee of the child’s trust. Part of the estate planning process is to educate families about the choices available con-cerning management of their assets and to help put the right safeguards in place.

Will we have enough assets to take care of our child when we are gone?

Some parents have enough financial resources to provide for their exceptional child’s needs while they are alive because they are able to do a lot of the necessary support work for free. But they may not have enough resources to safely provide for those needs when they are gone. In this case, it’s a good idea to talk with a good financial advisor about things like long-term financial planning and the benefits of life insurance.

Another important consideration is how to pre-serve or protect any private or government benefits the child may receive, or for which the child may become eligible in the future. The proper design of the trust is essential, so that the assets held in the trust do not disqualify the child from benefits he might otherwise receive.

Planning for exceptional children can seem over-whelming, but it is extremely important. And with a little planning and advice from the professionals, you can secure your exceptional child’s future and your peace of mind.

James E. Creamer Jr., is an attorney at Blanco Tackabery and Matamoros in Winston-Salem, where he advises clients in areas of tax, estate planning, trust and estate administration, charitable planning, busi-ness planning, and asset protection planning. He lives in Winston-Salem and has two children.

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By Amy Baskin

When your child has physical or cognitive issues, vacations can be tricky. But as these travel-savvy families explain, with extreme planning, creativity and a sense of humor, you can have amazing adventures.

Flying to a far-off destinationOne month before their Italy adventure, Katharine Har-

rison gave her 11-year-old son, Max, an Italian phrase book. Because of a congenital birth defect, Max has spinal dam-age. Although he walks with the help of canes and braces, he tires easily, so a wheelchair works best for long distances and travel.

“I told him he’d be our guide,” she says. On the trip, he expertly ordered pizza on the piazza and asked locals for the nearest bathroom. With a rented car, the two explored the countryside, visited little towns and dined at outdoor cafés.

“He loved being part of a funky, different kind of world,” says Harrison.

Not that their European adventure was glitch-free. At the car rental agency, they waited three hours to find a vehicle to accommodate Max’s wheelchair. And the cobblestone streets, though quaint, made pushing and riding in a wheelchair exhausting.

“Budget extra for taxis,” advises Harrison.

Helpful tips: ■ “Don’t be a surprise at the airport,” says Harrison. When

reserving, explain you’re traveling with someone who uses a wheelchair (or has special needs).

■ At the airport, ask staff if you can join a shorter line at the airport. Also bring a photocopy of your child’s health binder with doctors, medical history and hospital dis-charge summaries, advises Sarah Watt. Her son Ben, 7, has Hirschsprung’s disease and wears an ileostomy bag that collects stool, and must be drained, cleaned and changed often. For a two-week European trip, she packed two months of medical supplies, but still ran out. Now before traveling, Watt researches online where they can buy medi-cal supplies at their destination. She also suggests carry-ing a description of your child’s conditions written in the country’s language.

■ For a long flight, ask your doctor if your child could use medication to keep calm, suggests Pauline Busby. “Be sure to test the meds before you leave,” she cautions. When her son Aidan (who has an intellectual disability, autism and cerebral palsy) was 8, they travelled to Australia to visit family. On the flight, Aidan had an adverse reaction to the meds, becoming “hyper and agitated.”

Going to the beachMexico was a mecca of fun for Cathy Smith, her husband,

Kevin, and 13-year-old son, Adam. Initially, Smith was

Traveling with a special needs child


apprehensive since Adam has a develop-mental disability and a seizure disorder requiring ongoing medical care.

“I went online and staked out all the medical facilities in the area,” she says.

She also made sure there was a doc-tor on call 24/7. Happily, Puerto Vallarta proved to be wheelchair accessible, with ramps on every sidewalk. For a downtown sightseeing trip, a van large enough for Adam’s wheelchair picked them up at their resort. “The locals were really welcoming,” says Smith. When the family wanted to visit a second-floor restaurant, two waiters lifted Adam up the flight of stairs.

“They even brought out a special salsa just for him,” she says. “He loved the food — especially the enchiladas.”

Adam especially relished his time at the pool and beach. “He’s in his element in the water,” says Smith. Favorite trip memories include a beach day, complete with professional family seaside photos and fireworks over the water. Somehow, sun and sand vacations work miracles on Adam. “He always seems more relaxed and has fewer seizures when we’re away,” says Smith. And the seizures lessen for a while when they return.

Helpful tips: ■ Go online to research your destina-

tion. Check the accessibility of your hotel, transportation and sidewalks. Research the weather, too — will your child need special sunscreen?

■ To increase your child’s independence in the water, consider buying a life jacket (about $200) designed for peo-ple with special needs. Smith brings Adam’s life jacket on every trip.

■ Ask if your hotel loans specialized beach-accessible wheelchairs with supersized wheels.

Summer resortsIf you are craving a little rest and

relaxation, try a resort that has many of the amenities included, including special attention for your special needs child.

“Some resorts will do absolutely

anything for you — especially family-run ones,” says Harrison.

At one family-oriented resort, Max participated in the kids’ program, with extra staff support. While Max enjoyed pony rides and fishing trips, Harrison walked in the woods, visited the town and read on the dock.

“They even had night events, such as a reptile show, so parents could have a relaxed dinner,” she says. “It was great to have time together and apart.”

Helpful tips: ■ “When you reserve, tell them about

your situation,” advises Harrison. Ask if they’ve had other guests with special needs. Ask about facilities, staff sup-port, programs and wheelchair-acces-sible cabins.

■ Ask about the noise levels in differ-ent kinds of accommodations. If your child is a light sleeper, or awake often at night, try a separate cabin where you can easily take your child outside and not disturb the rest of your family.

■ If your child requires special foods, such as a puréed diet, ask to book accommodations with a kitchen.

Amy Baskin, who has a master’s degree in education, writes about par-enting for North American publications. She is co-author of “More Than a Mom — Living a Full and Balanced Life When Your Child Has Special Needs “(Wood-bine House). For more information, visit amybaskin.com.

ResOuRces FOR specIAl neeDs TRAvel

AutismontheSeas.com:

Arranges group and individual

cruise vacations for people

who have autism spectrum dis-

orders or other developmental

disabilities.

FamilyVacationCritic.com:

Has an online forum for par-

ents of special needs kids.

pfd-a.com: provides life

jackets that are designed for

people with reduced mobility

of all ages.


In July 2010, two extraordinary schools joined hands to create The Centers for Exceptional Children, bringing together more than 95 years of nurturing children with special needs. The Children’s Center and The Special Children’s School have been “Hallways of Hope” for thousands of children and their families.

Our mission is to educate, nurture and support children with special needs to reach their highest potential intellectually, emotionally, socially and physically. Between the two locations, classroom teachers, numerous assistants, physical, occupational and speech therapists, nurses, and other support staff work as a team to help children open paths to a better tomorrow.

The Centers for Exceptional Children are a unique partnership between the Winston-Salem/Forsyth County Schools and the United Way of Forsyth County. This partnership enables CFEC to provide developmentally appropriate education, a full range of therapies and medical support, through a customized plan designed for each child.

Our full array of services include remarkable experiences such as therapeutic horseback riding, horticultural therapy, music, art, story-telling and special holiday experiences. Many of the Centers’ enhancements flourish through the generosity of community support, proving that people are looking for fresh ways to serve worthwhile organizations.

We support an Inclusion Program for many of our classes. This program

places a number of typical children in classrooms. The remainder of the class is made up of children with a variety of special needs. The curriculum is theme-based, hands-on, and developmentally appropriate for all children. Because we are part of the Winston-Salem/Forsyth County school system, our teachers all hold NC teaching licenses, many with master’s degrees and National Board-certification — unheard of in most child care settings! In addition, both centers hold five-star licenses, the ‘gold standard’ for North Carolina preschools.

Family Support Network of Greater Forsyth is an outreach program that further enhances CFEC. Affiliated with the Family Support Network of NC (www.fsnnc.org), examples of programs that FSNNC contributes are: the Parent-to-Parent Matching program, through which parents of a special needs child become mentors to parents who have a newborn with needs and a special touch program for parents with hospitalized children.

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Living with a learning difference or attention disorder can have its challenges, so where can students and families in the Triad turn for help in overcoming some of these obstacles? Noble Academy is a place where students in grades K-12 can learn in a safe environment that is suited to their academic and social needs. Small class sizes ensure that our teachers can learn the unique needs of each of their students and individualize instruction appropriately.

Students develop confidence in themselves and their abilities, and begin to feel comfortable taking risks in an academic environment where it is safe to make mistakes and where everyone has different strengths and weaknesses. Take a peek into a Noble Academy classroom and you will see students who are confident enough to raise their hand or come up to the board to answer a question, even if they’re not quite sure they have the right answer. You’ll see students and teachers encouraging each other in the pursuit of knowledge.

Noble Academy also believes in nurturing the whole student by embracing and exploring their strengths. Students are encouraged to explore, understand, and achieve not only in academics, but also in

art, drama, music, technology, athletics, and through a variety of leadership opportunities. Noble Academy not only strives to provide the best educational environment, but, as Head of School, Linda Hale says, “we also want the community to view Noble Academy as a resource for helping children with learning differences.”

Check our website for information regarding a variety of programming for the public, including our partnerships with the Triad chapter of the Learning Disabilities Association and the Summer Treatment Program for children with ADHD. Learn more about Noble Academy at www.nobleknights.org

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The Enrichment Center at Wesleyan Christian Academy invites you to come and explore our one-of-a-kind learning environment. Nowhere else will you find such an extensive program designed to meet the learning needs of our students, all within the realms of a strong Christian academic setting.

We offer an exceptional education for families who truly desire to have their children actively involved in a college-preparatory Christian school but, because of their learning differences, are often unable to remain in their current classroom setting. Realizing that each of these students has been uniquely created by God, Wesleyan Christian Academy stepped to the forefront and established a program that can be compared to no other. The ultimate educational goal for our students is to become strong, successful, independent learners, forging ahead on a college-preparatory tract while at the same time addressing individual learning styles and needs.

Our Enrichment Center faculty provides instruction in all subject areas to students with diagnosed learning differences. Our mission is to close existing educational gaps and provide instruction in remedial, compensatory, and self-advocacy skills, creating independent learners for future success.

Each member of our core teaching staff is both certified by the state of North Carolina and trained in the Hill Center methodology, an Orton Gillingham-based program strongly recommended by both educators and psychologists.

Our core teaching includes:• Phonemic Awareness• Decoding / Encoding Skills• Fluency• Reading Comprehension• Proofing• Written Composition• The Language of Math• Math Computations• Math ReasoningOur Enrichment Center students

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Marriage tips for couples of special needs children

The introduction of a child into a marriage is gener-ally a time of great joy and celebration, a time of hopes and dreams. It also quickly becomes a time of lost sleep, lost personal time and lost relational time for the couple. For any parents, and particularly the parents of a child with special needs, the goal of maintaining a healthy and satisfying marriage can be more easily achieved with these relational tips:

■ Be intentional about spending time together. You were a couple before you were parents, and the strength of being a family will be supported by main-taining the strong relationship of the couple.

■ Be intentional about communicating. The mundane conversations of scheduling, carpooling, homework, after-school activities are important and vital, and so are the in-depth conversations of feelings, relational connection, grieving lost hopes and dreams, and re-orienting to new realities.

■ Re-set your goals — for yourself, for your family and for your child. Trying to force old dreams into new realities will only serve to frustrate and disappoint. Allowing yourself to dream again in the new truth can open possibilities not yet imagined.

■ Seek support — for yourself and for your marriage. When we find ourselves in unfamiliar territory, we do well to seek out professionals who can help us understand what is going on and others who have been in a similar place.

This is by no means an exhaustive list, but it can be a great starting place when you find yourself in a difficult parenting situation.

Bryan Hatcher is director of Center Development and Education for CareNet Counseling of Wake Forest Baptist Medical Center. He is also a spouse for 17 years, the proud parent of an incredible 15-year-old and “Uncle Big Cool Bryan” to seven nieces and nephews.

When a child is diagnosed with a medical or development issue that may be long term,

or even lifelong, the stress placed on the marriage can seem unmanageable at times.

By Bryan Hatcher


His first year of life, Daniel

childs endured three intestinal

surgeries for a rare condition

called Hirschsprung’s disease. For

10 months, instead of changing

diapers, his parents changed his

colostomy bags. From then on,

they assumed Daniel’s anxieties

and tantrums resulted from this

early trauma. Twenty-three years

and many labels passed until they

finally discovered their son’s most

comprehensive and helpful diag-

nosis: Asperger’s syndrome.

By Nilla Childs

As a preschooler, Daniel was labeled gifted. His IQ was in the superior range. He asked questions incessantly, learned to read early and had a clever sense of humor.

But dressing Daniel each day made us nervous wrecks. He was particularly annoyed by sock seams. He demanded that each shoe lace be exactly even with the other. Daniel had trouble with transitions. He cried about getting into the swim-ming pool for lessons and then cried when it was time to get out. He screamed every day I dropped him off at pre-kindergarten. The experi-enced teacher calmly peeled him out of my arms and distracted him with an activity until I could get away. We asked a child psychologist for help. He labeled Daniel with oppositional defiant disorder and prescribed that we provide more consistent disci-pline.

When it was time for Daniel to enter middle school, he could not bear walking through the crowded

halls and multiple classroom changes, so I home-schooled him for a year.

In high school, after his wisdom teeth were removed, Daniel stopped taking the prescribed antibiotics, which resulted in a life-threatening dental infection. For weeks, he had to submit to grueling daily jaw scrap-ings. The guidance counselor stepped in to help Daniel deal with the overwhelming general anxiety he felt the rest of that year, triggered by that painful event.

We knew Daniel was homesick when he went away to college. We knew he did not have many friends, but we thought he was just intro-verted and shy. But we found out he had not attended class or eaten in the cafeteria for a year. When he admit-ted he was afraid to walk across cam-pus because he feared people were staring at him, a psychologist agreed he had social phobia and depression.

Daniel tried college again a few years later and survived for a while. Through campus disability services, Daniel met a man in his 40s, recently

diagnosed with autism. I recog-nized their similarities and began to research the characteristics of autism: difficulty with body lan-guage, facial expressions, eye contact, posture, back-and-forth conversation, changes in routine; preoccupation with restrictive interests. Daniel was finally diagnosed accurately by the Epilepsy Institute.

In recent years our family has learned how to work together to sup-port Daniel’s living independently, everything from finding a job coach to his managing his own health care, budget, condo and car maintenance. Autism does not go away at age 18, but the earlier it is diagnosed, the easier it is for the individual to learn ways to manage their life to the fullest.

Nilla and her husband, Steve, raised two sons, Daniel and David. She is the author of the book “Puzzled: 100 Pieces of Autism” (see page 21). To learn more about Nilla, visit nillachilds.com.

DanielGrowing up undiagnosed

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Daniel, now 31 years old (with parents Steve and Nilla Childs), was diagnosed with Asperger’s syndrome as an adult.


Marcy-Marie was born just

two years after our first child.

like many others, we thought

we had the whole parenting

thing figured out. Turns out, we

had many new lessons to learn.

By Lindsey Cox

We had anticipated a normal, healthy pregnancy and delivery, just like we had experienced with our first child. However, at 24 weeks, my pregnancy went from being routine to complicated. I began having preterm labor. After weeks of holding off labor with medication and bedrest, Marcy made her appearance.

Her first Apgar score was low, and just hours after she was born we learned she had abnormal blood cultures and had developed a fever and an erratic heart rate. She was swollen and puffy, and seemed stiff all over. The doctors suspected an infection.

After several courses of IV antibiotics, the fever and infection disappeared within a few days. But the stiffness did not go away. We noticed she could not open and close her right hand, and some of her fingers appeared to be stuck or frozen in place. Diaper changes were difficult as her hips and legs were extremely tight. Her feet were slightly clubbed, and she could not turn her neck from side to side. Despite all of this, she was the most delightful and happy baby.

We were sent to Brenner Chil-dren’s Hospital in Winston-Salem, where we received and continue to receive top-notch specialty care. At three weeks of age, after seeing

pediatric orthopedists, geneticists and therapists we were finally given a diagnosis — Arthrogrypo-sis Multiplex Congenita (AMC).

Arthrogryposis causes joint contractures (“frozen” joints) as well as stiff muscles. Some children are mildly affected, while others may be absent of muscle tis-sue altogether, and never walk or move. Some children are affected in every joint and muscle, while others in only a few areas. There is no cure. But therapy can help improve function.

Immediately Marcy began an intensive therapy program. This included daily stretching at home every 45-60 minutes during her waking hours. She saw physical and occupational therapists at the hospital two-three times each week. Marcy underwent serial casting and splinting of her hands and feet for more than a year, and has had several corrective surgeries.

As I look back, I remember the confusion and how overwhelmed we felt. We were told that Marcy might never walk, and if she did, it would be much later in life. We were also

told that her type of Arthrogryposis was caused by an extremely rare genetic disease. This disease may cause other serious medical issues, and no one knew what her quality of life would be like.

Despite the grim prognosis, she was walking by 2 and running soon after. She is now a very active 10-year-old who has achieved her yellow belt in Jujitsu and enjoys playing softball. Her quality of life is awesome, and her future is bright. She will need a hip replace-ment soon and will continue thera-peutic stretching for the rest of her life. But we are thankful. She has brought so much joy to our lives and through her personal struggles has inspired many others to be the best that they can be.

Lindsey Cox lives with her husband, Chad, and their three children: Cleo, 12; Marcy-Marie,10; and Reece, 9; in Thomasville. Cox works from home as a freelance copywriter and editor. She also home-schools her children and enjoys helping other families take the home-schooling plunge.

marcy-marie The future is bright

arthro

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SiS mu

ltiplex co

ng

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10-year-old Marcy-Marie (right) has Arthrogryposis, a rare joint and muscle disorder. She also has a sister, 12-year-old Cleo, and a brother, 9-year-old Reece.

Pho

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dam

Mo

wer

y

victor pauca may age, but in

many ways, he may never have to

grow up. so his parents needed

to find a way to explain victor’s

complicated and very rare genetic

disorder to his sisters, at a level that

they could understand.

By Theresa Pauca

I am mommy to three super children: Sofia, 13; Francesca, 10; and Victor, 7. What makes them super? Their positive attitudes, infinite com-passion and acceptance that everyone is different. All three children have learned from each other, and each has been given unique talents and gifts.

After my husband, Paul, and I were blessed with two precocious and gifted girls, we had begun to feel like we had done everything right. In fact, to a degree, we felt we could do nothing wrong. Our life was so great because we had made it that way — we felt almost invincible; noth-ing could shatter our world. Well, that nothing turned into something so life-changing that we could have never imagined it. We were blessed a third time with a son with special needs.

When Victor was born, it was not apparent that he had disabilities. But as he turned from an infant to a toddler, it was obvious he was not reaching his developmental mile-stones. Now remember, we were com-ing out of our fairy-tale world, where the girls did everything early. At first we thought he was just moving along at his own speed, but then it became

clear that Victor’s pace was extremely gradual. The bubble, which we had carefully built around our perfect little lives, was just then bursting.

After a long road involving numerous doctors, at 2 and a half, Victor was diagnosed with a rare genetic disorder called Pitt-Hopkins syndrome (PTHS). There are only about 250 cases diagnosed world-wide. It is also so rare that there were no associations in the world for PTHS. So we started an international support group, and later the Pitt Hopkins Research Foundation (pitthopkins.org), with the help of some other amazing PTHS families.

What is Victor like?He is one of the happiest people I

have ever known. According to the National Library of Medicine at the National Institutes of Health, “Pitt-Hopkins syndrome is a condi-tion characterized by intellectual disability and developmental delay which range from moderate to severe, breathing problems, recurrent sei-zures [epilepsy], and distinctive facial features. … Children with Pitt-Hop-kins syndrome typically have a happy, excitable demeanor with frequent smiling, laughter.”

Some of the distinctive facial fea-tures are these pronounced Cupid’s bow lips and a wide smile, so children with PTHS are beautiful. Sometimes I like to tell people Victor has “Pitt Handsome syndrome,” just to see their reaction.

victorSuper siblings in Neverland

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-ho

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Theresa and Paul Pauca’s youngest child, Victor, has an extremely rare disorder called Pitt-Hopkins. When older sisters Sofia and Francesca found out, they began their journey to Neverland together.


Pho

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What do we tell the girls about their brother?

At the time of Victor’s diagnosis, they were 8 and 5. I am a “glass half full” person and wanted to use a positive message to tell them about Vic-tor, without bringing unnecessary sadness into their young lives.

So I told them that Victor was like Peter Pan. In his mind he would never have to grow up, and we could always enjoy Neverland with him. We could share this special place with Victor forever. We could always enjoy buying him beautiful toys and could play happily with him, forever. I told them he wouldn’t have to do a hard job or even homework.

“Wow,” they said, with smiles on their faces, “Victor’s lucky.”

Is it always easy for our family?Definitely not! Do we need help from family,

friends and our community along the way? Yes! Just this past Christmas, I came to the realization five years after Victor’s diagnosis, that I should stop acting like I could do it all, because I can’t. If someone asks me if they can help, I now say “yes!” Because I know that if they didn’t want to help, they wouldn’t be asking.

What have the super siblings learned?To be patient, helpful and kind. To accept

other people’s differences — all kinds of differ-ences. That we are not perfect and really wouldn’t want to be.

And they can visit Neverland, forever, with Victor.

Theresa Pauca is vice president of the Pitt Hopkins Research Foundation (pitthopkins.org), dedicated to finding a treatment and ultimately a cure for PTHS. She is married to Paul Pauca, who developed the app “Verbal Victor” (see page 21). Theresa, Paul and their children live in Winston-Salem.

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Increased risk of fractures found in children with Down syndrome

A new study out of Spain recently evaluated the bone strength of children with Down syndrome, and found that they are at a higher risk of fractures.

The researchers used a tool called Quantitative com-puted tomography (Quantitative CT) to measure bone strength, bone mineral density and bone mineral content in the tibia (shinbone) and radius bone (in the forearm) of 30 adolescents with Down syndrome. They compared the measurements with approximately the same number of study participants who did not have Down syndrome.

The researchers noted that “despite higher levels of volumetric bone mineral density volume” in these areas, the adolescents with Down syndrome were “at higher risk of developing osteoporotic fractures in the future due to their lower bone strength indexes.”

— Shannon Koontz

Ben sauer has Down syndrome

and language disorders. like other

boys his age, he likes cars, video

games, books and celebrating his

many accomplishments.

By Sandy Sauer

When I was 28 weeks pregnant with my son Ben, an ultrasound revealed that his arms and legs were measuring short, and he had a right clubbed foot. The doctor said there was a 90 percent chance that he had Down syndrome. We were shocked and totally unprepared for this news, and a blood test performed two weeks after he was born confirmed it.

He was also diagnosed with esotropia (meaning his eyes turned toward his nose); and receptive language, expressive language and articulation-phonological disorders. Thankfully, he had no other major medical issues. At age 3 months, he had surgery for his clubbed foot, followed by serial casting, a process in which casts were applied and removed weekly for six months to help him with standing and walk-ing. He has also had his tonsils and adenoids removed to help with his sleep apnea.

Since then, Ben has been doing great. He is very friendly and compas-sionate. He is currently enrolled in a first-grade readiness program and receives speech and occupational therapy privately and at school. Like other 6-year-old boys, he is a huge Disney “Cars” fan, and he enjoys sports, video games and books.

Though we’ve had to make a few accommodations for Ben’s

disabilities, we are a typical family. In fact, Ben has helped my husband and me to grow stronger as a couple. Ben’s disabilities don’t hold us back from doing anything we want to do as a family. He may take a little longer to do some things, but he continues to make progress at his own pace, and we celebrate his accomplishments as they come. Ben is also a great big brother to our 4-year-old son, Peyton, and helps him when he can. He con-tinually amazes me with what he can do and what he understands.

One of the biggest challenges we face is helping other people overcome misconceptions about exceptional children. When I first found out that Ben had Down syndrome, my biggest fear was that other kids were going to be mean to him. I still worry about this, and the fact that he is not able to tell us about how he feels at school or what his interactions with others are like. But I also worry about how he is treated by adults, and whether people

will underestimate what Ben is capa-ble of doing now and in the future.

People with Down syndrome and other intellectual and developmental disabilities have so much value and worth! We will encourage Ben to take his education as far as he wants to go and have already looked into postsec-ondary programs such as the “Beyond Academics” program at University of North Carolina at Greensboro. We look forward to seeing what Ben will accomplish in the future.

Sandy Sauer lives with her hus-band, Stephen, and their sons Ben, 6, and Peyton, 4, in Winston-Salem. Sauer serves as educational chair on the board of directors at the Piedmont Down Syndrome Support Network and serves on the Intellectual/Devel-opmental Disabilities Advisory Board for Center Point Human Services. She also co-facilitates a support group for families at the Family Support Network of Greater Forsyth.

benCelebrating

accomplishments

do

wn

Syn

dro

me

6-year-old Ben Sauer has Down syndrome. He loves celebrating his accomplish-ments with his parents and little brother, 4-year-old Peyton.


Pho

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tesy

of P

ort

rait

Inno

vatio

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calebcaleb Hooker was born

prematurely with a congenital

condition that left him legally

blind. Despite his medical hur-

dles, caleb approaches life with

humor, wit and a lot of love.

By Amy Hooker

Our 9-year-old son, Caleb, was born early — when I was just 24½ weeks pregnant. He weighed 1 pound, 11 ounces. His eyes were fused, his skin was transparent, and he was the smallest living thing I had ever seen. From the beginning, we were told to prepare for a roller coaster ride. I hated roller coasters!

Caleb’s first five months of life were in the Neonatal Intensive Care Unit at Brenner Children’s Hospital. I will never forget them, even though I try to look forward instead of backward. During those five months he had two surgeries to repair a bowel perforation, a brain hemorrhage, was on a venti-lator for three months, had a blood clot in his leg, endured numerous blood transfusions, spinal taps, a hernia surgery, two eye surgeries, and too many x-rays and blood tests to count.

He was later diagnosed with mild Cerebral Palsy and wears leg braces (his “magic shoes”). He was also diagnosed with Septo-Optic Dysplasia, a rare congenital condition that involves the optic nerves and the pituitary gland. This diagnosis was more like a tornado instead of a roller coaster. As a result, he is visually impaired, along with having a disorder called diabetes insipidus (causes extreme

thirst and urination), adrenal insufficiency and hypothyroidism.

And even though he still lives with these diagnoses and other issues from being born prema-turely, Caleb also has a team of great doctors, therapists, schools, family and friends. As a result, Caleb has overcome challenges and surpassed all expectations, all with a sense of humor. I knew, for instance, that occupational therapy was helping because when I went to pick him up from school at age 4, there he stood, naked with only his leg braces on. He had never undressed himself before. I was so proud!

We have educated Caleb about his special needs, but he also likes to educate others in his own way. He explained to a friend that dia-betes insipidus is when he pees all the time. Kids seem to understand his explanation a lot better. He has the best sense of humor and says things that we only think. It’s not always a good thing, but I always get a good laugh.

Caleb loves socializing, church,

spending time with his nanny, going to The Little Red School (Independent Learning Center for Visually Impaired), cooking, bingo, entertaining, inventing games, school, science, visiting Victory Junction Camp, “brown” girls (because he can see them bet-ter), and telling his second-grade teacher she is HOT (I think he’s working on a good grade).

Our roller coaster ride hasn’t just been about Caleb’s setbacks and achievements. It’s also been about the emotional highs and lows. With Caleb, it’s been mostly highs. We never have a dull moment, and despite all of his health hurdles, he is always laugh-ing and keeping us laughing. He is an amazing child with a huge heart and an inspiration to all who know him.

Amy Hooker and her husband, Jason, have two children, Caleb, 9, and Madison, 14. Amy works for Family Support Network of Forsyth County. Jason is a middle-school teacher in Davie County.

Premature, but large at heart

Septo-o

ptic dySplaSia

9-year-old Caleb Hooker approaches life with love and laughter and is an inspiration to his parents, Amy and Jason, and 14-year-old sister, Madison.


Twins have a lot in common,

but there is one significant distinc-

tion between twin boys, JB and

Joachim — JB lives with autism.

But that doesn’t stop a bond that

runs deep with these brothers.

By Benedetta Agnoli Nicolazo

I could tell our pediatrician had something important she wanted to tell me and that I was not going to like it. There was that unmistakable mixture of empathy and concern etched in her face as she sat down in front of me.

I had brought one of my twin sons, JB, in that morning for yet another cold coupled with an ear-ache. As usual, he had not been easy to examine. I ascribed it to his feeling sick and being scared. He was 2 years old.

“I think JB is a high-functioning autistic,” the doctor said.

I said nothing.She told me who I should con-

tact and that she would give me all the numbers I needed for an official evaluation. She left the room, and I let myself cry. Looking back on it later, I am fairly sure she planned to leave the room to give me a moment to let it sink in. What she didn’t know was that just a few days before, JB’s preschool teacher had suggested an evaluation as well. Once I heard the doctor say those words I knew I had no choice. I had to face this, and pro-longed self-pity would not help me. More importantly, it would not help him. By the time the doctor came

back into the room, I had dried my tears and was ready to listen.

I had JB, short for Jean-Baptiste, and his fraternal twin brother, Joachim, when I was 35. When I found out I was having twins I real-ized Mother Nature has a funny sense of humor. Everyone was thrilled — twins! Yay! But I was terri-fied. I did not know how to take care of a newborn, and the prospect of two seemed like a recipe for disaster. By the time the doctor had delivered the news, the boys had been in preschool for 6 months and had done very well, and both my boys loved it. However, over the previous few months JB had exhibited some very marked aggres-sion. I had hoped it was a phase. Now I knew he needed help.

I took the numbers and phoned

the Children’s Development Services Agency (CDSA), and we went to what would turn out to be the first of sev-eral evaluation visits. They all said the same thing — “he is on the autism spectrum” — nothing more specific than that.

That first summer he had private speech therapy with a wonderful young woman named Jessica, with whom he thrived. He finally began to speak, and the aggressiveness began to subside. Because JB turned 3 at the end of that summer, he “aged out” of the CDSA, and we had look for other services.

When he re-enrolled in his pre-school with his brother, I started to see the negative reactions people can have toward someone with autism. JB started to act out in his class, a

JB ‘My Joachim’auti

Sm

4-year-old JB (in back) was diagnosed with autism, but that doesn’t change the bond he shares with twin brother, Joachim.


tiny room filled with 14 children and two teachers, none of whom could understand what he was trying to say. I was called in to speak to the teacher. Twice. So I hired someone they recommended to stay in the class and help him, and for a few days it worked. When I realized we couldn’t pay her as much as I had initially thought, I told her honestly and asked if she wanted to quit. She insisted she didn’t do it for the money and that she loved JB and wanted to help. But the next day she didn’t show up.

I searched for a replacement and found a nurse with special needs experience, but before she could start, I was politely asked to remove JB from the school. A friend told me later that several parents had threat-ened to remove their children from the school unless JB was taken out, because they had heard he was “bad” and prone to hurt others.

For three months he was sepa-rated from his twin, not understand-ing why he couldn’t go to school with his brother. We visited many different schools during that time, until we discovered The Special Children’s School in Winston-Salem. It is a won-derful school filled with people who don’t even flinch at “bad” behavior or give up on a child who needs more help than most.

When people find out JB has autism now they all say the same thing — “I would never have guessed.” That is the most important lesson I have learned from all this. Most people don’t understand autism, but nonetheless, they think they have a very clear idea of what an autistic person is like. I love that my big, strong, handsome boy defies their

unfounded ideas.It took a while for the bond

between JB and Joachim to re-form after his diagnosis. It wasn’t easy for anyone, but at least we adults could research, discuss and learn more about autism. Joachim could only watch and muddle it out for himself. JB is very lucky to have a brother who has, what Dr. Klinepeter from Amos Cottage called, “an excessive amount of empathy.” They love each other very much, and JB has proven that he has a very big heart and a very good brain. Joachim has become the big brother; JB watches him and copies him and follows his example. He calls him “my Joachim.”

JB will always be developmentally behind other children his age, but I know that as a person he has more strength and warmth than many people. He will be able to do whatever he wants, just not as fast or in exactly the same way as others.

Joachim knows his twin brother is different, even if he can’t explain it in words, and he doesn’t care. He just loves playing with JB, who hangs onto his every word and gesture.

The best part of my day is watch-ing them play and laugh together. My boys are not perfect, and they will continue to drive me crazy, thrill me and fill my heart with the kind of love that hurts. It is so pure and strong. Most importantly, they are great people, and that is what I want everyone to see.

Benedetta Agnoli Nicolazo, her husband, Jerome, and their boys moved to North Carolina from France. They live in Winston-Salem.


Exceptional Service for Exceptional People

www.lindleyhabilitation.com336-987-8465

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Kids Eat Free!

parentpiedmont

Want to know where to find the best meal deals for your family? Our

Kids Eat Free directory lists Triad restaurants where the under 12

crowd eat free or at a reduced price.

To find out if your favorite restaurant participates go to www.piedmontparent.com >

Directories & Resources > Family-Friendly Restaurants.


Understanding differencesAny parent of children with special needs

knows how difficult it can be to explain what makes their child different, to other young family members and friends. Help teach children diversity and inclusivity with the Understanding Differences Nonfic-tion Collection. The collection includes four books with customized Read-Aloud labels written by early literacy experts, and offer guidance in helping the parent select the vocabulary that’s appropriate based on the child’s age. Makes a great gift! For ages 3-7. Hardcover. $71.99.

Understanding feelingsHelp your child say exactly how he’s feeling, even

when communication is difficult, with the My Feelings Hand Puppet Set. These puppets come in sets of 10 and have detailed expressions to help children learn about and express their feelings of happiness, sadness, fear, anger and embarrassment. Made from durable fabric that is surface washable, the puppets fit both adult and child hands. For ages 1 and up. $73.99.

Compiled by Shannon Koontz

Exceptional dolls You can help build your child’s self-esteem, and learn more

about the physical challenges of their peers, with the help of the Special Needs Equipment Set. The set of eight accessories fit the 14-inch International Dolls (also sold by Hatch). Accessories include heavy glasses, a walker, leg braces, a wheel chair, and even an assistance dog, complete with a leash and harness. $113.99.

Fab Finds for the Exceptional ChildTop picks for toys, books and technology

JusT FOR KIDsAll of the toys and books on this page can be found through

piedmont-based company, Hatch early learning. Order

products at hatchearlylearning.com/store or call 800-624-7968.

To request a catalog, visit hatchearlylearning.com/catalog.


Verbal VictorPaúl Pauca’s son, Victor, was born with a rare genetic

disorder called Pitt-Hopkins syndrome (page 14), which is characterized by intellectual disability and developmental delay. So Pauca, an associate professor of computer science at Wake Forest University, worked with a team of students to develop a fully customized app called the Verbal Victor (named after his son), for the iPhone, iPod Touch and iPad. Verbal Victor is an affordable alternative to expen-sive communication devices that are on the market, and has been downloaded several thousand times by users all around the world. It allows parents and educators to build personalized content for communication using a built-in camera and microphone. The camera takes pictures of objects familiar to the child, and the microphone records sounds in the language and voice of the child’s choice, both in a matter of seconds. Pauca and the Verbal Victor app have been featured by TEDx, The Associated Press, USA Today, CNN, National Public Radio and Huffington Post.

For more information about Verbal Victor, visit appsforthegreatergood.com. $6.99.

AutisMateSoftware developer Jonathan Izak watched his

11-year-old brother, Oriel, struggle with communication because of his autism all of his life. So Izak developed AutisMate and launched it in February 2013. AutisMate is the only tool for the iPad that offers intuitive tools to help those with autism navigate both behavioral and communicative challenges. It allows individuals with autism, their family and friends to import personal images, video, audio and other information into a visual scene-based platform, complete with video modeling, social stories and other features. A GPS allows scenes to change according to the user’s location. An iPhone and Android tablet versions will be available later this year.

For more information, visit autismate.com. $149.99.

Shedding light on a puzzling diagnosisMedical professionals often emphasize the importance of diagnosing Autism

Spectrum Disorder early, but for Nilla Childs and her son, Daniel, that diagnosis didn’t come until he was in his 20s. For his entire life she tried to make sense of his behavior, until he was in college and a diagnosis of Asperger’s helped the pieces of the puzzle fall into place.

Nilla, a Winston-Salem author, tells Daniel’s story in her book, “Puzzled: 100 Pieces of Autism.” Hear from Nilla (page 12), or order a copy of her book at nillachilds.com. $15.95.

iDevIce Apps

A gReAT ReAD

Courtesy of Ken Bennett, Wake Forest University

22 2013 exceptional child | piedmontparent.com PiedmontParent’sULTIMATE FAMILY RESOURCE GUIDE 2010-11 55 Allareacodesare(336)unlessotherwisenoted.

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Burlington Recreation & Parkswww.ci.burlington.nc.us1333 Overbrook Road, Burlington 222-5030The Burlington Recreation & Parks Department has three public swimming pools. The David L. Maynard Sr. Aquatic Center (MAC) is a 300,000-gallon year-round Aquatic Center with six 25-yard

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We can provide information on child care options in the following counties:

Guilford • Rockingham • Randolph800-289-5098

Ashe • Alleghany • Davidson • Davie • Forsyth Stokes • Surry • Wilkes • Yadkin

800-937-7610

Need help locatingQuality Child Care?

Our database contains information onChild Care Centers • Family Child Care homes Preschool Programs • after School Programs

Summer Camps

www.growachild.orgProgram is an equal opportunity provider.

Children with disabilities face more oral health challenges

A recent report from the American Academy of Pedi-atrics revealed children with developmental disabilities suffer disproportionately from oral disease when com-pared to children without disabilities. The lead author of the report, Kenneth W. Norwood, M.D., said that there are several contributing factors including the use of medicines high in sugar, the inability to independently brush teeth, or because the child may be on a pureed diet. In some cases these children might also have a fear of being touched or have difficulty arranging transporta-tion to the dentist office. Norwood, an associate professor of pediatrics at the University of Virginia in Charlottesville and a former medical student at Wake Forest University School of Medicine, says that the care of teeth for the developmentally disabled is especially important because “their smile is their most effective way of interacting with the world.”

— Shannon Koontz


A study released in early 2012 by the Centers for Disease Control and Prevention (CDC) estimated that one in 88 children in the United States have been identified as having an autism spectrum disorder (ASD). ASD was found in the study to be five times more common in boys than girls, with about one in 54 boys diagnosed.

ASD, or autism, can now be reliably diag-nosed in children as young as age 2. While no medications have yet been proven effec-tive, thankfully, there is something that can be done.

Early intervention pro-grams are shown to be critically important. Current culture is divided between “waiting and watching” and early intervention programming. The thought behind wait-ing and watching is to let kids develop as they will on their own time, and that perhaps they will simply grow out of it.

So what is autism? ASD is a complex disability which impacts communication, social interaction and behavior. It is hallmarked by restricted, repeti-tive and common patterns of behavior, interests and activities. A child with ASD may demonstrate at least one of the following: unusual fixation with one or more interests or activities, a need for rigid adherence to specific routines or rituals in daily life, or repeti-tive motor behaviors using parts of the body such as fingers or hands. A child with ASD may also play with toys incorrectly, or have marked regression in smiling or verbal skills.

An early intervention program is one that sup-ports the developmental needs of children from

birth to 5 years old with developmental delays. These programs focus on improving physical development, including vision and hearing, improving thinking

skills, communication skills, and emo-tional development. These interven-

tions aim to build upon natural learning, which occurs in those

early years. There’s no doubt that

autistic children who undergo early interven-tion programs do better than children who do not get early treatment. And there is certainly no good

reason to wait to provide such therapy. Early interven-

tion programs work best in younger children because the

brain undergoes the most shaping and growth during the first three years

of life. This is when it is easiest to make the more profound impact on the child’s development. Clearly it is important to not simply wait and watch a child’s development, but to take action to correct the situation while it is still possible.

As the rate of autism diagnoses continues to rise and shows no signs of slowing down, parents should become well-versed in options available, so that they can advocate for their children. When it comes to the health and future of our nations children, waiting and watching has no place.

Melissa Koehler is a 2011 nursing graduate from the University of Pennsylvania, where she is currently a 2013 master’s candidate, specializing in pediatric primary care. Simultaneous to pursuing her nurse practitioner degree, she has also worked as a regis-tered nurse in the Pediatric Intensive Care Unit at the Children’s Hospital of Philadelphia.

Take action … don’t ‘wait and watch’early intervention programs are crucial

By Melissa Joy Koehler


Access and Transportation

ATGREHABatgrehab.com317-m S. westgate drive, greensboro336-808-1260Specializes in pediatric mobility and seating.

FREEDoMMoBiliTyAiDSfreedommobilityaids.com205 cedar lane, clemmons336-766-8520Mobility and accessibility equipment.

FoRSyTHMEDiCAlSuPPlyguilfordmedicalsupply.com3041 trenwest drive, winston-Salem 336-768-5512Home medical supplies including mobility products.

GuilFoRDMEDiCAlSuPPlyguilfordmedicalsupply.com2172 lawndale drive, greensboro336-574-1489Home medical supplies including mobility products.

ilDERToNCoNVERSioNCoMPANyildertonvans.com701 S. main St., high point336-841-2020Sells new and pre-owned accessible vans and provides assessment and installation of adaptive equipment.

SAFERiDEWHEElCHAiRTRANSPoRTATioNwinston-Salem336-995-7529 Low-cost wheelchair transportation service.

SCAT—SPECiAlizEDCoMMuNiTyAREATRANSPoRTATioNSERViCEgreensboro-nc.gov223 w. meadowview road, greensboro336-333-6589Greensboro Transit Authority’s shared-ride transportation service for eligible riders who have a disability.

WillARD’SCABCoMPANyp.o. Box 871, winston-Salem

336-725-2227Provides medical transportation to individuals with special needs.

Adaptive Equipment and Toys/Assistive

Technology

ABlEDATAabledata.com8630 Fenton St., Suite 930Silver Spring, md800-227-0216; 301-608-8998Database of assistive technology; website includes consumers’ guide and funding sources.

ABlEPlAyableplay.orgReviews and ratings of play products for children with special needs.

ESPECiAlNEEDSespecialneeds.com877-664-4565Adaptive equipment including toys, baby gear and mobility aids.

NATioNAllEkoTEkCENTERlekotek.org2001 n. clybourn ave., chicago, il 773-528-5766A nonprofit organization that offers toy lending libraries for children with special needs. Also offers therapeutic play sessions, trainings and monthly webinars for parents and professionals.

NoRTHCARoliNAASSiSTiVETECHNoloGyPRoGRAM(NCATP)ncatp.org

3407 w. wendover ave., Suite h, greensboro336-297-2180 131 miller Street, winston-Salem336-716-8030State agency with local centers provid-ing information, demonstrations and short-term loans of assistive devices, plus used equipment listings and referrals to funding sources.

Autism Spectrum Disorder/Asperger’s

ABCoFN.C.CHilDDEVEloPMENTCENTERabcofnc.org3904 old Vineyard road, winston-Salem336-251-1180Specialized school for children with autism-spectrum disorders including Asperger’s. The school also provides parent education, social-skills groups and spaces for typically developing children in an inclusive preschool program.

AuTiSMCENTERFoRliFEENRiCHMENT(AClE)autismsociety-nc.org9 oak Branch drive, greensboro336-333-0197Offers services including day programs and skills instruction for individuals on the autism spectrum and their families.

AuTiSMSoCiETyoFNoRTHCARoliNA—TRiADREGioNSERViCESautismsociety-nc.org

9 oak Branch drive, greensboro336-333-0197Community-based services include home and community support, day support, long-term vocational sup-port, supported employment, respite, individualized caregiver training and education, personal care and skills instruction.

AuTiSMSoCiETyoFNoRTHCARoliNA—AlAMANCECouNTySuPPoRTGRouP336-333-0197Volunteer, member-run support group for families of individuals with autism.

AuTiSMSoCiETyoFNoRTHCARoliNA—FoRSyTHCouNTyCHAPTERautismsocietyfc.orgwinston-Salemautismsocietyforsythcounty@gmail.comVolunteer organization offering information and support to individuals living with autism. Support group meet the first Friday of each month at South Fork Park’s Old Farmhouse, 4403 Country Club Road, Winston-Salem. Also runs Camp Imagine, a summer residential camp for children with autism.

AuTiSMSoCiETyoFNoRTHCARoliNA—GuilFoRDCouNTyCHAPTERasncgc.orggreensboroasncgc@gmail.comNonprofit organization dedicated to providing support for Guilford County residents who are on the autism spec-trum as well as their families, teachers and caregivers.

AuTiSMSPEAkSautismspeaks.orgThe nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advo-cating for the needs of individuals with autism and their families. Includes comprehensive list of resources by city and state.

FAMilySuPPoRTNETWoRkoFGREATERFoRSyTHCouNTy—ExCEPTioNAlFAMiliESSuPPoRTGRouPfsngreaterforsyth.com

Exceptional Child Resources


336-924-5301A parent group for families who have children with special needs. Meets on the fourth Thursday of each month from 5:30 to 7:30 p.m. at Little Creek Recreation Center, 610 Foxcroft Drive, Winston-Salem.

GREENSBoRoTEACCHCENTERteacch.com122 n. elm St., Suite 920, greensboro 336-334-5773Services include diagnostic evalua-tions, treatment planning and imple-mentation, education, consultation, supported employment assistance, training opportunities and research.

iCANHouSEicanhouse.org862 w. Fourth St., winston-Salem336-723-0050iCan House is a nonprofit organiza-tion that provides social and learning opportunities for those with social differences and communication challenges (ages 8-adult). Although a diagnosis is not required to partici-pate, some have autism, Asperger’s syndrome, ADHD, anxiety or other related communication disorders. Using a club-based model along with a curriculum, participants learn and practice concrete social and perspec-tive-taking skills and also develop greater self-awareness and increased self-esteem. iCan House is a place of belonging for parents and families as well as the participants.

Blind/Vision Impaired

CoMMuNiTyloWViSioNCENTER/WiNSToN-SAlEMiNDuSTRiESFoRTHEBliNDwsifb.com 7730 north point Blvd., winston-Salem 336-759-0551 Offers comprehensive eye exams by specialty low vision doctors, individu-alized training and a complete line of low vision products.

iNDuSTRiESFoRTHEBliND—GREENSBoRo920 w. lee St., greensboro336-274-1591Offers opportunities for people who are blind to achieve greater vocational, personal and economic indepen-dence.

THEGoVERNoRMoREHEADSCHoolPRESCHoolSATElliTEPRoGRAMncoes.net/gms_preschool.shtml

501 S. mendenhall St., greensboro336-334-3748The Governor Morehead School serves children identified with visual impairments from birth to 5 years. Free services include direct and consulta-tive special education that can be provided in a wide variety of settings, including developmental day centers, LEA’s, mainstreamed settings and home settings.

SERViCESFoRTHEBliND—WiNSToN-SAlEM4265 Brownsboro road Suite 100, winston-Salem 800- 422-0373District office works in areas of preven-tion of blindness, conservation of sight, restoration of vision, indepen-dent living and job placement for the blind and visually impaired.

Camps and Summer Programs

CAMPANNhigh point city lake park, Jamestown336-883-3481A summer day camp program for school-age children and adults with developmental disabilities.

CAMPCAREFREEcampcarefree.org275 carefree lane, Stokesdale336-427-0966A free, one-week camping experience for children with specific health prob-lems and disabilities. Also offers Sickle Cell Anemia camp and hosts a camp for Muscular Dystrophy.

CAMPCARoliNATRAilSdiabetes.org/adacampcarolinatrailsheld at ymca camp hanes, 1225 camp hanes road, king888-342-2382 ext. 3217Residential camp for children in 3rd-11th grade living with diabetes. Offering medical and nutritional care as well as a staff comprised mostly of young adults also living with diabetes.

CAMPiMAGiNEautismsocietyfc.orgheld at ymca camp hanes, 1225 camp hanes road, [email protected] summer residential camp for chil-dren ages 7-17 with autism spectrum disorder or related communication disorders.

CAMPJoygreensboro-nc.govhagan Stone park road, pleasant garden336-373-2954A summer day camp for individu-als with special needs offering two three-week sessions for individuals with developmental disabilities and a one-week session for individuals with physical disabilities.

CAMPRoyAllcamproyall.org250 Bill ash road, moncure919-542-1033Camp Royall is run by the Autism Society of NC, serving individuals from age 4 up to older adults on the spectrum. Camp programs are offered year round, including summer camp, mini-camp weekends, family days and adult retreats. Camp Royall provides campers with typical camp activities, just in a very structured and special-ized way, the majority of our campers receive 1:1 supervision.

EMFDiSCoVERyeasternmusicfestival.org/ community/camps200 north davie St., Suite 303, greensboro336-333-7454Designed for rising 1st-5th graders diagnosed with HFA/Asperger’s syn-drome who function independently in a group setting and are interested in music. EMFdiscovery participants receive an introduction to classical music and the orchestra through hands-on learning. Experienced music and special needs resource teachers provide a kid-friendly and creative approach to music through instrument demonstrations, making and playing instruments, singing, and a unique introduction to melody, harmony, and rhythm.

RiVERWooDTHERAPEuTiCRiDiNGCENTERSuMMERRiDiNGSESSioNriverwoodtrc.org6825 rolling View drive, tobaccoville336-922-6426Riverwood offers seven weeks of group lessons for typical and disabled children ages 3 and up and adults.

SERToMADEAFCAMPcampsertoma.org1105 camp Sertoma drive, westfield336-593-8057Traditional overnight camp for hearing-impaired youth ages 8-16.

SoARsoarnc.org

p.o. Box 388, Balsam828-456-3435SOAR’s adventure programs are for youth ages 8-25 diagnosed with LD and/or ADHD. Activities include rock climbing, backpacking, whitewater rafting, snorkeling, fishing,SCUBA, kayaking, horseback riding, llama trekking, mountain biking, cav-ing, riflery and exploration. Locations in NC, WY, FL, CA, NY, Costa Rica and Belize.

ViCToRyJuNCTioNvictoryjunction.org4500 adam’s way, randleman336-498-9055Victory Junction enriches the lives of children with chronic medical condi-tions or serious illnesses by providing life-changing camping experiences that are exciting, fun, and empower-ing, in a safe and medically-sound environment.

Childcare

THEARCoFHiGHPoiNT/CoMMuNiTyCoNNECTioNSFAMilyliFECENTERhealthy-triad.org 153 e. Bellevue drive, high point336-884-7179; 336-883-0650Provides daycare services for children ages 1-12 with developmental dis-abilities as well as children who are typically developing.

GATEWAyEDuCATioNCENTERschoolcenter.gcsnc.com3205 e. wendover ave., greensboro336-375-2575Public school with four infant/toddler classrooms that serve children with special needs ages birth to 3 years.

GuilFoRDCHilDDEVEloPMENT—REGioNAlCHilDCARERESouRCESANDREFERRAlliNEguilfordchilddev.org1200 arlington St., greensboro336-378-7700Childcare resource and referral agency links families with childcare providers and community services. Oversees Early Start/Head Start programs.

WoRkFAMilyRESouRCECENTERworkfamilyresource.org530 n. Spring St., winston-Salem336-761-5100Provides consumer education, referrals and resources to promote quality childcare in Forsyth County.


Chronic Health Conditions

AMERiCANASTHMAFouNDATioNamericanasthmafoundation.org4 koret way, lr-216, ucSF, San Francisco, calif.415-514-0730National foundation provides informa-tion, resources and updates on news and treatments for asthma.

AMERiCANCANCERSoCiETy—GREENSBoRoCHAPTERcancer.org4-a oak Branch drive, greensboro336-834-0844Information, support, research and resources for individuals living with cancer.

CySTiCFiBRoSiSFouNDATioN—CARoliNASCHAPTERcff.org2301 Stonehenge drive, Suite 200, raleighSupport, advocacy, resources and education for people affected by cystic fibrosis. Pediatric care center located at Wake Forest University Baptist Medical Center.

kiDSPATHATHoSPiCEoFGREENSBoRokidspath.com2504 Summit ave., greensboro336-544-5437Offers homecare services for children (birth through 18) living with pro-gressive and potentially limited life expectancy. Grief counseling is also available for ages 3-18 in Guilford County grieving the illness or death of a loved one.

JuVENilEDiABETESRESEARCHFouNDATioN—PiEDMoNTTRiADCHAPTERjdrf.org/triad312 n. eugene St., Suite d., greensboro336-373-1768 Fundraising, resources and support for families, children and adults with Type 1 diabetes.

PiEDMoNTHEAlTHSERViCESANDSiCklECEllAGENCypiedmonthealthservices.org1102 e. market St., greensboro336-274-1507Sickle Cell Disease testing, educa-tion, genetic counseling and support services. Serves six counties: Guilford,

Forsyth, Alamance, Rockingham, Randolph and Caswell.

Deaf/Hearing Impaired

BEGiNNiNGSFoRPARENTSoFHEARiNG-iMPAiREDCHilDRENncbegin.org800-556-2796 ; 800-541-4327Provides emotional support and access to information as a central resource for familieswith deaf or hard of hearing children, age birth through 21 years in North Carolina.

CoMMuNiCATioNSERViCESFoRTHEDEAFANDHARDoFHEARiNG(CSDHH)csdhh.org1175 revolution mill drive, Studio 15, greensboro336-275-8878; 336-274-1461 (tty/Vp)A nonprofit agency serving Guilford County and surrounding areas in advocacy, information, support and referral. Also provides sign language interpretation, sign language classes and captioning services.

THEEARCENTERoFGREENSBoRoearcentergreensboro.com1126 n. church St., Suite 201, greensboro336-273-9932Hearing evaluation and testing, hearing aids and hearing implants for hearing restoration and other audiol-ogy services.

THENoRTHCARoliNASCHoolFoRTHEDEAFncsd.net

517 w. Fleming drive, morganton828-432-5200Day/residential facility for the educa-tion of children who are deaf and hard of hearing.

uNCGSPEECHANDHEARiNGCENTER300 Ferguson Building, 524 highland ave., greensboro336-334-5939 Evaluates speech and language devel-opment in children, and also has sum-mer preschool and early elementary school language groups.

Developmental Delays

CHilDREN’SDEVEloPMENTAlSERViCESAGENCy(CDSA)brennerchildrens.org/cdSaamos cottage3325 Silas creek parkway, winston-Salem336-713-7492and123 w. center St. extension, lexington336-224-6990A regional early intervention center for infants and toddlers with develop-mental disabilities or delays. Offers evaluation, treatment, service coor-dination and consultation services to families of children birth to 3 years in Forsyth, Davidson, Davie, Stokes, Surry and Yadkin counties.

CHilDREN’SDEVEloPMENTAlSERViCESAGENCy(CDSA)—GREENSBoRoncei.org122 n. elm St., Suite 400, greensboro336-334-5601Federally funded statewide program that offers early intervention services

for birth to age 3. Serving Guilford, Alamance, Rockingham, Randolph and Caswell counties.

CARECooRDiNATioNFoRCHilDREN(CC4C)communitycarenc.org336-641-3181Free case management service for eligible children from birth to 5 years. Serves children born at risk for developmental delays, children who have difficulty learning to speak or other delays.

FAMilySERViCESoFTHEPiEDMoNTfamilyservice-piedmont.org315 e. washington St., greensboro336-387-6161 and1401 long St., high point336-889-6161 andJamestown Building902 Bonner drive, Jamestown336-889-6161Largest private nonprofit agency serv-ing children and families in Guilford County. Offers assessment and refer-rals, as well as individual and group therapy for children on a variety of issues including ADHD.

HoRizoNSRESiDENTiAlCARECENTERhorizonscenter.org100 horizons lane, rural hall336-767-2411A residential facility for children and adolescents who have severe mental disabilities and developmental delays. Horizons also offers respite care.

THEARCoFGREENSBoRoarcg.org1050 revolution mill drive, Studio 3, greensboro336-373-1076Promotes and advocates for oppor-tunities that empower people with developmental disabilities to have choices as they live their lives in the community.

THEARCoFHiGHPoiNTarc-of-hp.com153 e. Bellevue drive, high point336-883-0650Nonprofit organization dedicated to improving the well-being of persons with developmental disabilities through advocacy, research and education.


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Down Syndrome

DoWNSyNDRoMENETWoRkoFGREATERGREENSBoRoteam-up.org A group of parents who are commit-ted to supporting one another, sharing important information and advocat-ing for the very best in school and community services for children with Down syndrome.

PiEDMoNTDoWNSyNDRoMESuPPoRTNETWoRkpdssn.com4715 yadkinville road, #144, pfafftown336-480-88710Provides support and information to parents of children with Down syndrome in the Piedmont.

Disability Support and Advocacy

AMERiCANSWiTHDiSABiliTiESACTada.govInformation and assistance about dis-ability rights.

AMERiCANASSoCiATioNoNiNTEllECTuAlANDDEVEloPMENTAlDiSABiliTiESaamr.org501 3rd St. nw, Suite 200, washington, d.c.202-387-1968Promoting public awareness and access to education, health care and vocational services.

BENCHMARkScfsa-nc.org2609 atlantic ave., Suite 105, raleigh919-828-1864An association of members who provide quality critical care to North Carolina’s most vulnerable children and families.

MARCHoFDiMESNoRTHCARoliNACHAPTERmarchofdimes.com/northcarolinagreater triad division410 Brookstown ave., winston-Salem336-723-4386Funds research and provides commu-nity services, education and advocacy to improve the health of babies by preventing birth defects, premature birth and infant mortality.

EASTERSEAlSDiSABiliTySERViCESnc.easterseals.comgreater winston-Salem developmental disabilities Services 4407 providence lane, Suite a, winston-Salem336-757-4681 andgreater greensboro early childhood, Foster care & Family Services 3405 w. wendover ave., Suite c, greensboro336-545-6338 In conjunction with the CDSA, helps families access services for children with developmental disabilities.

TRiADFiRSTiNFAMiliES(TFiF)500 w. Fourth St., winston-Salem336-757-8721Helps individuals with developmen-

tal disabilities and/or families find resources, including monetary assis-tance, to meet needs for which there are no other funding sources. Serves Forsyth, Davie and Stokes counties.

WRiGHTSlAWwrightslaw.comInformation about special education law, education law and advocacy for children with disabilities.

Educational Evaluation

CARoliNAPSyCHoloGiCAlASSoCiATEScarolinapsychological.com5509-B w. Friendly ave., Suite 106, greensboro336-272-0855Private practice specializing in behavioral health services including diagnosis and counseling for both adults and children.

CHilDREN’SDEVEloPMENTAlSERViCESAGENCy(CDSA)greensboro: alamance, caswell, guilford, randolph, rockingham countiesncei.org122 n. elm St., Suite 400, greensboro336-334-5601Early intervention services for children birth to age 3.

CHESHiRECENTERCoMMuNiCATioNcheshirecenter.net2500 n. church St., greensboro800-360-1099 Pediatric speech-language, com-munity based rehabilitative services

(C.B.R.S.), physical therapy and occupa-tional therapy to infants and toddlers.

CHilDREN’SDEVEloPMENTAlSERViCESAGENCy(CDSA)winston-Salem: davison, davie, For-syth, Stokes, Surry, yadkin countiesncei.orgamos cottage3325 Silas creek parkway, winston-Salem336-713 7492Early intervention services for children birth to age 3.

CoRNERSToNEBEHAVioRAlMEDiCiNEcornerstonehealth.com1814 westchester drive, Suite 402, high point336-802-2205and4515 premier drive, Suite 301, high point336-802-2205Psychological testing and an autism diagnostic testing clinic.

TRiSTAN’SQuESTtristansquest.com115-a S. walnut circle, greensboro336-547-7460Comprehensive psychological assess-ments and educational testing.

uNCGATTENTioN-DEFiCiT/HyPERACTiViTyDiSoRDERCliNiCuncg.edu/psy/clinics/adhd1100 w. market St., 3rd floor, greensboro 336-346-3192 Provides assessments for learning dis-abilities in children and adolescents.

336.880.7578www.adammoweryphotography.com


Offers a full range of evidence-based assessment and treatment services.

Home Health Services

1STCHoiCEHoMECAREiNC.1stchoicehomecareinc.com1515 w. cornwallis drive, Suite 208, greensboro336-285-9107Provides a comprehensive array of ser-vices to assist in any home healthcare treatment plan to patients in Guilford, Alamance, Davidson, Davie, Forsyth, Randolph and Stokes counties.

BAyADANuRSESbayada.comOffers home healthcare with special-ties in pediatric nursing and habilita-tion, which serves clients in North Carolina who have autism spectrum disorders, mental retardation, cerebral palsy, and other developmental dis-abilities.

CHilDWHiSPERERSchildwhisperers.comp.o. Box 24303, winston-Salem336-608-7034Provides in home or child care occupa-tional therapy throughout the Triad.

CoMMuNiTyAlTERNATiVESPRoGRAMFoRCHilDREN(CAP/C)woody’s mom inc.woodysmom.org515 keisler drive, Suite 101, cary 919- 228-2844Offers long-term, home-based nurs-ing and other medically necessary services, supplies, and equipment to children with special healthcare needs and who live at home with their family in Davie and Davidson counties.

Learning Disabilities and Challenges/

ADHD/ADD

ADHDPARENTSuPPoRTGRouP—GREENSBoRoAREAadhdgreensboro.org336-832-9618; 336-334-5601, ext. 217; 336-346-3192A group of parents and service provid-ers dedicated to supporting loved ones with ADHD through education, awareness and community-building. Meetings are held at Trinity Church, 5200 W. Friendly Ave., Greensboro

ADHDPARENTSuPPoRTGRouPoFFoRSyTHCouNTy336-441-5698

Support group for parents of children with ADHD. Meets at Trinity Center, 640 Holly Ave., Winston-Salem.

FoCuSfocus-md.com/locations/ greensboro-nc/3625 n. elm St., Suite 110 a, greensboro336-398-5657A medical practice for children and adults with ADHD. Provides objective testing, medical treatment and behav-ior modification strategies.

lEARNiNGDiSABiliTyASSoCiATioNoFNoRTHCARoliNAldanc.org1854-a hendersonville road, #239, asheville [email protected], resources, support and research for families dealing with learning disabilities. In conjunction with the Noble Academy, meetings are held at Noble Academy, 3310 Horse Pen Creek Road, Greensboro.

lExERCiSElexercise.com619 tower St., raleigh888-603-1788Online help for struggling readers, writers and spellers. Also offers free dyslexia testing online.

uNCGATTENTioN-DEFiCiT/HyPERACTiViTyDiSoRDERCliNiCuncg.edu/psy/clinics/adhd1100 w. market St., 3rd floor, greensboro 336-346-3192 Provides assessments for learning dis-abilities in children and adolescents. Offers a full range of evidence-based assessment and treatment services.

Mental Health/Behavior Counseling

AMoSCoTTAGECHilDREN’STREATMENTPRoGRAMbrennerchildrens.org3325 Silas creek parkway, winston-Salem336-713-7492Provides a supportive treatment setting for children ages 3 through 7 who experience emotional and or behavioral problems.

CoNEHEAlTHBEHAVioRAlHEAlTHmosescone.com700 walter reed drive, greensboro

336-832-9700Offering a range of out-patient ser-vices for children and adults.

CoRNERSToNEBEHAVioRAlMEDiCiNEcornerstonehealth.com1814 westchester drive, Suite 402, high point336-802-2205and4515 premier drive, Suite 301, high point336-802-2205Psychological testing and an autism diagnostic testing clinic.

MENTAlHEAlTHASSoCiATioNFoRSyTHCouNTytriadmentalhealth.org1509 S. hawthorne road, winston-Salem336-768-3880Promotes mental health for children and adults through advocacy, out-reach, education and support.

MENTAlHEAlTHASSoCiATioNiNGREENSBoRomhag.org330 S. greene Street, Suite B12, greensboro336-373-1402Provides services and programs that promote mental health and support recovery from mental illnesses.

Neurological, Neuromuscular and Spinal Cord Injuries

and Disorders

GREENSBoRoCEREBRAlPAlSyASSoCiATioNiNC./GATEWAyEDuCATioNCENTERgatewayearlyintervention.org3205 e. wendover ave., greensboro336-375-2575An early intervention program focused upon the needs of children ages birth to 3 with severe developmental delays and medical disabilities.

EPilEPSyFouNDATioNoFNoRTHCARoliNAepilepsync.org1920 w. First St., Suite 5541-a, winston-Salem800-451-0694Statewide toll-free helpline, support groups, workshops, school programs, information and referral, patient edu-cation, health fairs, advocacy, special events and medication assistance.

EPilEPSyiNSTiTuTEoFNoRTHCARoliNAeiofnc.org1311 westbrook plaza drive, Suite 100, winston-Salem336-659-8202Independent nonprofit corporation dedicated to enriching the quality of life for children and adults challenged with epilepsy and other neurological disorders.

MuSCulARDySTRoPHyASSoCiATioNmda.org2306 w. meadowview road, greensboro336-856-1591Information on clinics, support groups, summer camps and equipment for children with muscular dystrophy.

SPiNABiFiDAASSoCiATioNsbancsc.org800-621-3141Resources, information and advocacy on the treatment for and prevention of spina bifida.

Pediatric Dentists and Orthodontists

ClEMMoNSPEDiATRiCDENTiSTRychildrens.fantasktek.com2311 lewisville-clemmons road, winston-Salem336-631-4770Specializing in dental care for children with special needs.

DR.RoSlyNCRiSP&ASSoCiATES,DDSsmilesrfun.com/index.html1203 Vaughn road, Burlington, 336-228-83923154 S. church St., Burlington336-524-54393150 nc hwy. 86n, yanceyville336-694-1114Specializing in dental care for children with special needs.

REyNolDSoRTHoDoNTiCS6161 lake Brandt road, Summerfield336-644-16641304 Beaman place, greensboro336-274-7649Orthodontist practice works with children with all types of special needs.

uNiVERSiTyDENTAlASSoCiATES1st Floor, watlington hall, medical


center Blvd., winston Salem336-837-2680Specializing in dental care for children with significant developmental dis-abilities.

Physical Therapy and Occupational Therapy

AlAMANCEREGioNAlMEDiCAlCENTERPEDiATRiCREHABCENTERarmc.com/pediatric-rehab-center336-538-7500Offers outpatient physical, occupa-tional and speech therapy for children.

BRENNERCHilDREN’SHoSPiTAlbrennerchildrens.orgwake Forest university Baptist medical center, medical center Blvd., winston-Salem336-716-wakeOffering outpatient physical therapy for children with neuromotor dis-abilities or congenital musculoskeletal anomalies. Also offers outpatient occupational therapy for children with fine motor, oral motor, adaptive or sensory deficits.

CHESHiRECENTERCoMMuNiCATioNcheshirecenter.net2500 n. church St., greensboro800-360-1099 Physical and occupational therapy for children birth to school-age

CoMMuNiTyACCESSTHERAPySERViCES3511 w. market St., Suite B, greensboro336-294-3338Physical therapy, occupational therapy, speech therapy and educational therapy services. Programs for sensory integration, therapeutic listening, feeding disorders, handwriting and autism spectrum disorders.

CoNEHEAlTHouTPATiENTPEDiATRiCREHABiliTATioNPRoGRAMconehealth.com1904 n. church St., greensboro336-274-7956Outpatient physical, occupational and speech therapy.

HiGHPoiNTREGioNAlHEAlTHSySTEMPEDiATRiCREHABiliTATioNPRoGRAMhighpointregional.com

600 n. elm St., high point336-878-6915Outpatient physical and occupational therapy for children.

oT4kiDSiNC.ot4kids.squarespace.com440 central ave., lexington336-236-6546Provides occupational, physical and speech therapy for children with special needs.

BuRliNGToNRECREATioNANDPARkSBurlingtonnc.gov/youth1333 overbrook road, p.o. Box 1358Burlington 336-222-5030Offers several recreational programs for individuals with developmental disabilities including summer camps and Special Olympics.

CARoliNASPiRiTATHlETiCSAll-STARCHEERlEADiNGcarolinaspiritathletics.net6204-c hackers Bend court, [email protected] cheerleading team for children with special needs.

ClEMMoNSGyMNASTiCSclemmonsgymnastics.com4786 kinnamon road,

winston-Salem336-766-3599Gymnastics classes for children with special needs.

CHAllENGERSPoRTSlEAGuEarcg.org/events_challenger.html336-373-1076, ext. 161Through the Arc of Greensboro and in partnership with Greensboro Parks and Recreation, offers programs and outreach including adaptive baseball, basketball and bowling activities for more than 80 school-age children with disabilities.

GREENSBoRoBAllETgreensboroballet.orggreensboro cultural center, 200 n. davie St., greensboro336-333-7480Offers dance classes for children with special needs.

GREENSBoRoPARkSANDRECREATioNMAiNSTREAMRESouRCESuNiTgreensboro-nc.gov 336-373-2735Recreational programs and special events for individuals ages 5 and up with mental, physical and visual special needs.

HiGHPoiNTPARkSANDRECREATioNSPECiAlPoPulATioNSDEPARTMENThighpointnc.gov

136 northpoint ave., high point336-883-3481 Year-round recreational and leisure opportunities for children and adults with disabilities. Programs include field trips, community integration outings, bowling league, holiday parties, Camp Ann, The Miracle League and Special Olympics.

HoRSEPoWERTHERAPEuTiClEARNiNGCENTERhorsepower.org8001 leabourne road, colfax336-931-1424Operating an equine program for chil-dren ages 3 and up with a diagnosed physical, emotional or social disability.

RiVERWooDTHERAPEuTiCRiDiNGCENTERriverwoodtrc.org6825 rollingview drive, tobaccoville336-922-6426 Professional equine-assisted activities for both children and adults with special needs.

SPECiAlolyMPiCSGuilFoRD/GREENSBoRosonc.net/guilford-greensboro3409-B w. wendover ave., greensboro336-544-0578 More than 500 athletes train and com-pete year-round in Special Olympics Greensboro programs.

SPECiAlolyMPiCSGuilFoRD/HiGHPoiNTsonc.net136 northpoint ave., high point336-883-3481 Offered through High Point Parks and Recreation, trains athletes in more than a dozen different sports.

THEMiRAClElEAGuEoFHiGHPoiNThpmiracleleague.org336-883-3481Baseball program for athletes with physical and/or intellectual disabilities. Players play on a specially equipped adaptive baseball field that allows those utilizing wheelchairs and walk-ers the opportunity to move around the field without barriers.

TuMBlEBEESulTiMATEGyMtumblebees.com6904 downwind road, greensboro336-665-0662Offers gymnastics and movement classes for children with special needs.


WiNSToN-SAlEMRECREATioNANDPARkSDEPARTMENT:SPECiAlPoPulATioNSuNiTci.winston-salem.nc.us2301 n. patterson ave., winston-Salem336-727-8000Offers several programs for disabled youth, including The Saturday Club, Life Skills and Aquabilities.

Schools, Special Education Programs, Tutoring and Classes

ABCoFN.C.CHilDDEVEloPMENTCENTERabcofnc.org3904 old Vineyard road, winston-Salem336-251-1180Private, specialized school for children with autism spectrum disorders.

ACADEMiCASSoCiATESacademicassociatesinc.com711 westchester drive, Suite 202, high point336-886-4198A comprehensive educational facility offering tutoring, testing and other educational services for all students.

THECHilDREN’SCENTER(PARToFTHECENTERSFoRExCEPTioNAlCHilDREN)thecfec.org2315 coliseum drive, winston-Salem336-727-2440Serving children ages birth through 11 with a variety of special needs, pre-dominately physical. Offers develop-mentally appropriate education and therapeutic interventions.

CluBz!iNHoMETuToRiNGclubztutoring.com/greensboro5603 w. Friendly ave. #281, greensboro336-605-5749Offers in-home tutoring in Greens-boro, Oak Ridge, Summerfield and High Point

GATEWAyEDuCATioNCENTERschoolcenter.gcsnc.com3205 e. wendover ave., greensboro336-375-2575Public school with four infant/toddler classrooms that are funded by the United Way and the Greensboro Cerebral Palsy Association. These classes serve children with special needs ages birth to 3 years, who are

experiencing a wide variety of devel-opmental delays and medical issues.

HAyNES-iNMANEDuCATioNCENTER200 haynes road, Jamestown336-881-7170A Guilford County public separate school ranging in age from preschool to 22 with severe to profound cogni-tive and/or physical disabilities.

NCPREkiNDERGARTENPRoGRAMalamance partnership for children — 336-513-0063, ext. 105Smart Start of davidson county inc. — 336-249-6688davie county Schools —336-751-0016, ext. 4220Smart Start of Forsyth county —336-714-4344guilford county partnershipfor children inc. — 336-274-5437, ext. 210Stokes partnership for children inc.— 336-985-2676, ext. 147North Carolina’s state-funded prekindergarten program for at-risk 4-year-olds, including those with chronic health conditions or special developmental/educational needs.

THEMuSiCCENTERgreensboro-nc.gov/index.aspx?page=1481city of greensboro336-373-2547Offering music classes for children with special needs.

NoBlEACADEMynobleknights.org3310 horse pen creek road, greensboro 336-282-7044 Private school specializing in working with students with a diagnosis of ADHD or another diagnosed learning difference.

PARAMouNTCHRiSTiANACADEMyparamountchristianacademy.org4124 Johnston St., high point336-887-9563Private school serving the needs of students with ADD/ADHD and other mild learning disabilities.

THEPiEDMoNTSCHoolthepiedmontschool.com 815 old mill road, high point 336-883-0992 Private school that works with children with learning disabilities and/or ADHD.

THESPECiAlCHilDREN’SSCHool(PARToFTHECENTERSFoRExCEPTioNAlCHilDREN)thecfec.org4505 Shattalon drive, winston-Salem 336-924-9309Serves children with special needs ages three to eleven in an inclusive environment, that allows children with and without special needs to model and interact with each other.

SuMMiTSCHool—TRiADACADEMysummitschool.com2100 reynolda road, winston-Salem336-722-2777An instructional program that is highly individualized, research-based and designed to meet the unique learning needs of students with dyslexia and related language-based learning differences.

TRiSTAN’SQuESTtristansquest.com115-a S. walnut circle, greensboro336-547-7460Nonprofit developmental center where children, teens and their fami-lies can receive quality mental health and academic services in a child- and family-friendly environment.

WESlEyANCHRiSTiANACADEMyENRiCHMENTCENTERwesed.org1917 n. centennial St., high point336-884-3333Specialized program within Wesleyan Christian Academy for students with learning differences.

Speech/Language, Brain Function and Vision Therapy

AlAMANCEREGioNAlMEDiCAlCENTERPEDiATRiCREHABCENTERarmc.com/pediatric-rehab-center3806 S. church St., Burlington336-278-8700Offering outpatient speech therapy for children.

AuGMENTATiVECoMMuNiCATioNANDASSiSTiVElEARNiNGCliNiCbrennerchildrens.orgBrenner children’s hospital,

winston-Salem336-716-wakeWorks with children who are non-ver-bal or whose speech and/or language skills are severely impaired. One of two clinics in N.C. which provide a multidis-ciplinary evaluation for children with AAC needs.

BRENNERCHilDREN’SHoSPiTAlbrennerchildrens.orgBrenner children’s hospital, winston-Salem336-716-wakeOutpatient speech/language therapy.

CHESHiRECENTERCoMMuNiCATioNcheshirecenter.net2500 n. church St., greensboro800-360-1099 Pediatric speech-language therapy to children from birth to school-age.

CoMMuNiTyACCESSTHERAPySERViCES3511 w. market St., Suite B, greensboro336-294-3338Physical therapy, occupational therapy, speech therapy and educational therapy services. Programs for sensory integration, therapeutic listening, feeding disorders, handwriting and autism spectrum disorders.

CoNEHEAlTHouTPATiENTPEDiATRiCREHABiliTATioNPRoGRAMconehealth.com 1904 n. church St., greensboro336-274-7956Outpatient speech therapy for infants to school-age children.

HiGHPoiNTREGioNAlHEAlTHSySTEMPEDiATRiCREHABiliTATioNPRoGRAMhighpointregional.com600 n. elm St., high point 336-878-6915Outpatient speech and language services for both children and adults.

liNG&kERRlingkerr.com3816 n. elm St., Suite e, greensboro336-370-4070Private speech and language therapy, occupational therapy and physical therapy.


MilESToNESTREATMENTANDlEARNiNGCENTERiNC.3640 westgate center circle, Suite a, winston-Salem336-659-0806Speech and language therapy facility offering speech-language-hearing assessments and therapeutic inter-ventions and academic tutoring to individuals of all ages.

NEuRoFEEDBACkASSoCiATESiNC.enhancedbrain.org/greensboro_neurofeedback.html2309 west cone Blvd., Suite 210, greensboro336-540-1972Uses non-invasive training techniques to train the brain and body to help reduce symptoms of disabilities, including ADHD, autism, developmen-tal delay and learning disabilities.

PEAkPERFoRMANCElEARNiNGCENTERsites.google.com/site/ peakperformancelearningcenter1400 Battleground ave., #202, greensboro336-549-6212Research-based Interactive Metro-nome® program “trains the brain” to plan, sequence and process information more effectively. Improves symptoms associated with ADHD, autism, sensory integration and audi-tory processing disorder.

SPEECHCENTERiNC.speechcenter.net185 charlois Blvd., winston-Salem800-323-3123; 336-725-0222Private practice providing speech-language pathology services including evaluation and individualized therapy.

THEViSioNTHERAPyCENTERvisiontherapycenter.org1330 ashleybrook lane, winston-Salem336-774-1770Treatment for Learning-related vision problems related to ADD/ADHD, dys-lexia, eye tracking/eye teaming and reading problems.

Support Services

AlAMANCEPARTNERSHiPFoRCHilDRENalamancechildren.org2322 river road, Burlington336-513-0063Nonprofit organization provides

programs and services for families and young children in Alamance County.

CARDiNAliNNoVATioNSHEAlTHCARESoluTioNS(AlAMANCECouNTy)acmhddsa.org2451 South church St., Burlington336-513-4311A managed behavioral health-care organization focused on helping individuals access the services they need to lead better daily lives. Serving individuals needing mental health, intellectual/developmental disability and substance use/addiction services by providing operations and systems; delivers services through a member-driven program. Serves several coun-ties including Alamance.

CARDiNAliNNoVATioNSHEAlTHCARESoluTioNS(DAViDSoNCouNTy)cardinalinnovations.org/piedmont245 le phillip court ne, concord704-721-7000A managed behavioral healthcare organization focused on helping individuals access the services they need to lead better daily lives. Serving individuals needing mental health, intellectual/developmental disability and substance use/addiction services by providing operations and systems; delivers services through a member-driven program. Serves several coun-ties including Davidson.

CENTERPoiNTHuMANSERViCEScphs.org

4045 university parkway, winston-Salem888-581-9988State-mandated local management entity and Medicaid-funded managed care organization in charge of oversee-ing the delivery of publicly-funded mental health, developmental dis-abilities and substance abuse services (MH/DD/SAS) in Forsyth, Stokes, Davie and Rockingham counties. Center-Point works closely with community partners, advocates and service pro-viders to address service. Offers a 24/7 toll-free customer services line.

FAMilySuPPoRTNETWoRkoFGREATERFoRSyTHfsngreaterforsyth.com4505 Shattalon drive, winston-Salem336-924-5301As an outreach program of The Cen-ters for Exceptional Children, provides support to families who have children with special needs (medical, devel-opmental, or other). Currently serves Forsyth, Davidson, Davie, Stokes, Surry and Yadkin counties.

FAMilySuPPoRTNETWoRkoFCENTRAlCARoliNAfsncc.org801 green Valley road, greensboro 336-832-6507 Provides support and resources for families of children with prematurity, developmental disabilities, chronic ill-ness, and other special needs. Serving Alamance, Caswell, Guilford, Randolph and Rockingham counties.

liNDlEyHABiliTATioNSERViCESlindleyhabilitation.com4214 Beechwood drive, Suite 101, greensboro336-987-8465Partnering with consumers, families, and the community to provide excep-tional service to exceptional people.

SANDHillSCENTERsandhillscenter.org1120 Seven lakes drive, west end800-256-2452; 910-673-9111Local management entity/managed care organization of the NC Depart-ment of Health and Human Services. Serves Guilford and Randolph counties.

STokESCouNTyPARTNERSHiPFoRCHilDRENstokespfc.com 151 Jefferson church road, king336-985-2676 Non-profit organization provide programs and services for families and young children in Stokes County, including administering the Smart Start program.

Miscellaneous

ClEFTliP/PAlATEPARENTSuPPoRTwinston-Salem336-945-9546Parent outreach and education.

FooDAllERGyFAMiliESoFTHETRiAD650-759-5336; [email protected] free monthly educational semi-nars and community education.

FooDAllERGyRESEARCHANDEDuCATioNfoodallergy.orgInformation, programs and resources related to food allergy and anaphy-laxis.

kiDS-EATPRoGRAMbrennerchildrens.orgBrenner children’s hospital, winston-Salem336-716-8097Provides evaluation and treatment for children with growth, swallowing or behavioral feeding disorders in chil-dren served with neurodevelopmental disabilities.


• ONE-ON-ONE • ALL SUBJECTS• PRE-K TO ADULT • READING • WRITING • MATH • SAT / ACT PREP• AFFORDABLE RATES• QUALIFIED TUTORS • FLEXIBLE SCHEDULES

WANT GREAT GRADES?

One Free

Week!

336-605-5749WWW.CLUBZTUTORING.COM/GREENSBOROSalemGym.com 336-765-4668

Where Conf dence Soars!

Motion MattersThat’s why Salem Fitkids was created.

Not only for typical children, our non-competitive, structured workouts are

easily individualized for children with many different challenges, including blindness, autism, physical disabilities, and more.

FREE EVALUATIONCall 765-4668 ext. 0

to schedule an evaluation with Coach Travis

and see how Fitkids can benefit your child.

Salem Gymnastics Sports Center4870 Country Club Rd., Winston-Salem

Greensboro Cultural Center200 North Davie Street, Box 2

Greensboro NC 27401

Music Camps & Classes

Ages: 5-12Taught by Jane Maydian, Board Certi� ed Music Therapist

Classes & Camps include: singing, moving, listening, instrument exploration and dramatic play activities that reinforce rhythm, beat and meter

For more information please call The Music Center at 336-373-2547or visit our website at www.city-arts.org

for Children with Special Needs

Surprising genetic-link between Autism, ADHD, and three other psychiatric disorders

Researchers have found autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), bipolar disorder, major depressive disorder and schizo-phrenia all share common genetic risk factors.

In the largest genetic study of psychiatric disorders to date, the investigators from the Cross-Disorder of the Psychiatric Genomics Consortium analyzed more than 33,000 cases, and nearly 28,000 control participants.

The researchers found a DNA sequence variation in two specific genes in each of these five disorders. These genes are both involved in calcium channeling in the brain, so the results of this new study could help researchers with developing new treatments for these disorders in the future.

The study was recently published in the medical journal The Lancet.

— Shannon Koontz

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