Genetic Disorders

Who We Help · Genetic Disorders

genetic disorders: the diagnosis is real. the predictions aren’t.

More genetic disorders are being identified every year, and each one arrives with a list of predicted limitations. NACD was founded on the belief that no child’s future is predictable. Since 1979, our individualized home programs have helped children rise above the predictions made about their diagnosis.

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For Parents

When the internet hands you a prognosis

With today’s expanding science and technology, many new genetic disorders have been identified. Along with listing a group of characteristics, websites regarding these disorders offer predictions of future limitations and problems, as well as a prognosis for a child with the disorder. Parents now seek services armed with this “wealth of information” and feel that their child’s future is already somewhat predictable.

NACD was founded on the belief that no child’s future is predictable. Every child is born with a potential that cannot be accurately forecast on a website.

A genetic disorder does not define the potential of an individual. Placing a child in a box with a label does not take into account the brain’s amazing ability to learn to function in new ways. It does not take into account the brain’s ability to learn to do processes using areas of the brain that were not previously utilized.

Since 1979, NACD has worked with over 50,000 families, including children with common, rare, and newly identified genetic disorders. This page explains how the approach works and what families have experienced.

The Precedent

Predictions have been wrong before

Years Ago

Children with Down syndrome were predicted to be unable to learn past the third grade.

Today

Children with Down syndrome can be on the honor roll at all levels of schooling and can attend college.

This does not happen on its own but through the work of the parents using specific strategies. Just as those predictions were erroneous for children with Down syndrome, the predictions for many genetic disorders that are being made today will prove to be just as mistaken.

NACD offers specific things that you, the parent or professional, can do to help a child rise above the predictions made regarding their genetic disorder. NACD offers a plan and a supportive program that works.

How It Works

Start from function, not from the label

NACD, through its neurodevelopmental evaluation process, identifies your child’s current level of function across the areas that matter:

  • Auditory and visual processing
  • Fine and gross motor skills
  • Language
  • Academics, when appropriate

Starting from that standpoint, as opposed to the standpoint of the genetic label, the NACD staff trains parents to move their child forward in all of those areas, drawing on a toolbox of more than 1,000 techniques. This pathway forward is not moving toward a predetermined dead end.

Your child’s brain can change and grow. Scientists call this “neuroplasticity,” and NACD trains parents to capitalize on it. Through intense input of appropriate, usable information, parents can have a profound and positive impact on their child’s development. The wonderful thing about this strategy is its ability to cause change in neurological function, and neurological change produces global changes in the individual. Unlike skill-based training, the neurodevelopmental approach addresses your child’s ability to think with complexity.

Dedicated Pages

Some genetic conditions have their own page

NACD works with children with any genetic disorder, common, rare, or so new it barely has a name. Two of the most common diagnoses families come to us with have dedicated, in-depth pages of their own.

Bob Doman on Williams Syndrome

Bob Doman on Rett Syndrome

How To Get Started

Three steps, starting free

1 · Free application and interview 2 · Evaluation and your child’s program 3 · Coaching and follow-ups, three times a year
Start Your Free Get Started Program

Testimonials From NACD Clients

Abaza Family Testimonial

Lara’s Journey with NACD Lara was diagnosed with Williams syndrome when she was just 1 month old. At the time, ...

Sanjana’s Journey

As told by her parents Our daughter Sanjana was diagnosed with a rare chromosome disorder at five. At around two ...

Williams Syndrome: Charlotte

by Bob Doman I just received this video from a very proud mother. Her daughter, Charlotte, is a graduate of ...

Williams Syndrome: “Charlotte” Not Held Back by Williams Syndrome

by Louise M. Charlotte, our little girl with Williams Syndrome, a genetic disorder, has been discharged from special education this ...

TRICIA GARRETT – A VERY SPECIAL GIFT

by Susan Garrett Tricia is a petite eight year old girl who is sure that everyone is her friend. She ...

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Questions

Common questions from parents

NACD identifies your child’s current level of function across auditory and visual processing, fine and gross motor skills, language, and academics, then trains you to run a daily home program designed to move your child forward in all of those areas. The program starts from your child’s actual function, not from the genetic label.
Yes. Because the assessment starts from function rather than from the label, it works the same for a rare or newly identified disorder as for a common one. One of the families on this page came to NACD with a rare chromosome disorder diagnosis, and the program was built from their daughter’s actual function, area by area.
Any of them. NACD families include children with Down syndrome, Williams syndrome, Rett syndrome, rare chromosome disorders, and diagnoses too new to have much literature at all. The approach does not depend on the specific disorder, because the program is built from your child’s function, not their category.
The underlying genetic difference does not go away. But the developmental and cognitive impact of a genetic disorder is not fixed. The brain’s ability to change and develop, called neuroplasticity, means that with intense input of appropriate, usable information, parents can have a profound and positive impact on their child’s development. The diagnosis is permanent. The predictions are not.
Those predictions describe averages drawn from children who did not receive intensive developmental intervention. Years ago, children with Down syndrome were predicted to be unable to learn past the third grade, and today children with Down syndrome are on honor rolls and attending college. Every child is born with a potential that cannot be accurately forecast on a website.
Skill-based training teaches a child to perform specific behaviors. The neurodevelopmental approach works on the underlying neurological function, and neurological change produces global changes in the individual, including your child’s ability to think with complexity. A child whose development has moved forward learns across the board, not just where they were drilled.
Your medical team stays your medical team. Many genetic disorders come with real medical considerations, and those belong to your physicians. NACD’s role is the developmental program, and we help you coordinate everything your child is receiving into one coherent plan.
The brain changes at every age, so it is never too late to start. NACD works with infants through adults with genetic disorders. Starting earlier gives you more time, but starting now beats waiting, whatever your child’s age.
Your NACD Developmentalist works directly with your child and with you, mapping function across auditory and visual processing, motor skills, language, learning, and health factors. You leave with a full picture of your child and a program of activities with clear instructions.
Every child is different, and we do not make promises. What we can say is that input compounds day after day, and progress is measured concretely at follow-up evaluations three times a year, so you always know what is moving and what the program targets next.