Lara was diagnosed with Williams syndrome when she was just 1 month old. At the time, the geneticists gave me a list of features and possible challenges of her syndrome and told me to put her in early intervention therapies to try to help her develop and keep up with her age. By the time she was 1 year old, we had already done a full developmental assessment and enrolled her in physiotherapy, oral motor therapy, and cognitive therapy, and I was running around from appointment to appointment with a crying child who seemed completely disconnected from everything going on around her, thinking I was doing my best to help her. For months we kept this routine; however, our struggles were growing. Lara had barely started crawling; she was not communicating with us in any way, and I always had the feeling like she could not understand me. She hated her therapy appointments, and so did I, and despite all our hard work, I could barely see any progress. Until I ran into a mother whose daughter had a similar condition and had been on the NACD program for a while.

I will never forget the first conversation with our coach, which was a breath of fresh air. For the first time, I felt like someone understood my challenges and believed in what my daughter could achieve and not only saw her challenges. Lara, who at the time was very stimmy and disconnected, responded very well to the program. In a matter of weeks, I started to feel like there was a change in her; she was responding to me and seemed more present, and ever since, program time has become the most important bit in our day. As we started the program, we also realized that our daughter had auditory processing disorder, which was causing her significant speech delay, fear of various sounds, and inability to focus on the talking addressed to her. Working on NACD’s program and the sound program, which they put her on as well, had a tremendous impact. She stopped crying randomly as she walked into different rooms and started paying more attention and responding more to us talking to her.

For more than 3 years now, NACD’s program has helped us navigate all of Lara’s challenges and focus on her strengths and capacities. The program addressed her physical development, her processing, her speech, her social/emotional development, and as she got into school, her academic development as well. Lara has progressed tramendously over the past few years, she is now almost 5 years old, an active, social, happy and pressent child, who is very eager to learn. She loves school and is learning very well in both English and Arabic. Her very frequent and immense emotional outbursts have improved tremendously. She is also talking loudly and more clearly than ever, and I am grateful for that every day.

There aren’t enough words to describe how much our program and coach’s guidance have helped not only my daughter but also helped me navigate my anxiety and fears as a mother and focus on helping my daughter the right way, and we depend on that guidance every step of the way.

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I just received this video from a very proud mother. Her daughter, Charlotte, is a graduate of NACD and is soon to be a high school graduate with a regular diploma. Louise keeps me in the loop and lets me know how Charlotte is progressing. Ten years ago, Louise wrote an article about Charlotte, and I thought folks would be inspired to see how she has done. I’m very proud of Charlotte and her family who has always helped her and who have had faith in her potential and ability to make a contribution. To know Charlotte is to love Charlotte. She is one super young lady.

To learn more about how NACD can help with Williams Syndrome, click here.

NACD Newsletter, March 2019 ©NACD

(To protect the child’s privacy, this video has been removed.)

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Charlotte, our little girl with Williams Syndrome, a genetic disorder, has been discharged from special education this morning…because she’s obviously too bright.

Charlotte is three years old and has been with NACD for two years on program. When she was younger, we were told by other experts (not NACD), “Your child may never button her own shirt.” “She may never write well.” We were told that she would never attend regular school and that she would have social issues. Children with Williams Syndrome are typically good at speaking, but they often have problems with comprehension.

We had decided at the beginning of the school year to enroll her at her sister’s Montessori preschool so that she would be with “normally-developing” children. But in order to leave the door open to a potential enrollment in an ESE program, we still needed to go ahead with what they call an “individualized education plan”. That plan requires testing, and that happened this very morning.

She had a psychological profile measured, speech testing, physical testing and the famous I.Q. The results, to me, are beyond belief.

First of all, the psychologist didn’t see “any cognitive issue with Charlotte;” the physical therapist said she was on the threshold of her age-group, but not exactly behind (just a little less strong and fast but with an enormous potential); but the biggest surprise was the I.Q. score. Individuals with Williams Syndrome typically score between 55 and 75. It is said that the genetic deletion is responsible for a loss of about 35 points on this test. Not that I am a big fan of figures, but still, this is what science books say. Imagine my surprise when I was told that our little girl scored 106 on the overall test and 111 on the non-verbal test (matching, logic, etc.). This is pretty amazing…just like my child! When I told my husband her scores over the phone, he made me repeat them. This is one of the happiest days of our lives.

What makes her scores even more amazing is that the test was conducted in English. My husband and I are native French speakers, and we speak French at home. Charlotte has only been speaking English for about six months.

I can’t believe she’s doing so well. I was actually in the room for part of the testing, and I couldn’t believe what she could actually do. So, in a nutshell, as the psychologist would say, “I don’t know what you do with her…but it pays off, so keep on doing it.” And we will—her individualized NACD program!!!!!!

I know she’s doing so well because of NACD.

(Also…she’s potty trained! Yippee!)

Reprinted by permission of The NACD Foundation, Volume 22 No. 2, 2009 ©NACD

Click here for an update on Charlotte.

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Tricia is a petite eight year old girl who is sure that everyone is her friend. She has Williams Syndrome, but she has no idea that she is any different from anyone in her first grade class. Symptoms of Williams Syndrome include a mild cardiac problem, poor muscle development, a small stature, and pixyish features. With the help of NACD and others we have learned to overcome Tricia’s deficiencies.

When Tricia was born, on February 26,1976, there were many clues that there were problems. We were simply told that the placenta had partially separated during the last few weeks of pregnancy. This separation was to have caused the low birth weight and answered the questions about why she was literally skin and bones. We had no reason to ask questions. To us, she appeared to be a very small but normal newborn baby. We noticed that her features were a little different B sort of pixyish but so cute on this very tiny baby.

Her health was good and she saw our family doctor regularly for her immunizations. During the first year the only thoughts we had about any problems was that she was a little slow. We told ourselves that some babies are slow when they have older brothers and sisters. All of this only added to the total shock when we found out near Tricia’s first birthday that she had “quite a heart murmur.”

Tricia was quite sick on her first Christmas and we had been to the doctor every few days without her getting well. After a week of treatment, our family doctor, considering her illness, small size, and low weight referred us to a good pediatrician in our town. The pediatrician had diagnosed a kidney infection and had stunned us with the revelation of the heart murmur.

The pediatrician prescribed medication for the kidney infection and referred us to a Pediatric Cardiologist at Children’s Hospital in Los Angeles. After hours of tests and x-rays we were finally in consultation with the doctor. He diagnosed Tricia as a child with Williams Syndrome and showed us pictures and descriptions in a medical book that fit her features and cardiac condition. He said nothing about brain injury and said that her heart problem was not serious but would require yearly visits to monitor her growth.

We left Children’s Hospital thankful that Tricia’s heart problem was not serious, but with thousands of questions about Williams Syndrome. The next day my husband and I searched libraries, saw our family doctor and Tricia’s pediatrician and still knew almost nothing. Williams Syndrome is rare. The only information we could find was a single page in a book about syndromes. There it was B in black and white B average I.Q. 58. Well, now we knew. No one told us, but we had found out.

Tricia was far too bright for us to believe this report. She was now over one year old and we knew we had no time to waste B but where do we go? Another trip to her pediatrician and we were referred to a child psychologist at UCLA. What a trip! Tricia was tested alone in a cold grey room by a dispassionate professional B no cues, no warmth, only tests. Even this doctor would not tell us. My husband finally had to ask him, “Is my daughter “mentally retarded.” The doctor, looking not at us but down at the floor, finally told us what we prayed was not true and said “Yes.” We were given no encouragement of any kind, only having been told what Tricia couldn’t do and would not be able to do.

Tricia was now 18 months old and was enrolled in a preschool for the “mentally retarded” children. The staff was always encouraging and stimulating. They lovingly taught Tricia for 3 years. We felt Tricia’s progress was good but we were constantly looking for something that could really help her. We knew that we were only treating symptoms and not making Tricia well in any way. Finally, our prayers were answered. A member of Tricia’s preschool staff showed us information from the Institute for the Achievement of Human Potential. Finally we had the answer!

Tricia’s name was placed on a waiting list and a few months later we were in Philadelphia. We eagerly returned home to begin as soon as possible. Tricia’s program was going to take approximately 8 hours a day to complete. It included masking for increasing lung capacity to increase oxygen to the brain. The program also included patterning to induce crosspattern creeping and crawling. She also crept and crawled miles a day. After about a month of patterning, her crawl became perfect.

Philadelphia is a long way from California, so we were still hoping for a similar program closer to home. Shortly before our return trip, we attended a seminar presented by Bob Doman. We were very skeptical because we thought we had the perfect answer for Tricia. Bob Doman’s lecture only reinforced our beliefs that what we were doing for Tricia was correct. We set an appointment for an evaluation with Bob for as soon as possible.

Bob’s evaluation of Tricia and her program met Tricia’s needs so specifically we were fascinated. Her previous program from the Institute for the Achievement of Human Potential had given her an excellent foundation upon which to build. Our goal had always been for Tricia to become a normal functioning adult. Along that path we had hopes of sending her to the Lutheran School where her brother and sister attend. Bob has always helped us with this goal. Bob’s evaluation specifically identifies single deficiencies and then he develops her program to overcome them. Her program has included such fascinating things as playing with fluorescent toys in a dark room with a black light, wearing eye and ear patches, and hopping and skipping.

We have seen Bob every 3 months for 3 years now and Tricia has come a long, long way. We couldn’t have done this without NACD and we are very thankful that it is there for those who need it. At our first meeting Bob suggested that we hold Tricia out of school for one year. This gave her an extra year to develop skills necessary for kindergarten so she would have a greater chance of success.

Tricia is now in the first grade and doing well. Every night we bring her books home and review them for the following day. In this way nothing comes to her “cold.” She is in the top reading group in her class and usually gets A’s and B’s on the math papers. Her teachers are very supportive and have always given Tricia the little extra help she needs. Teaching Tricia is not always easy. Sometimes we just can’t figure out how to get the information in or out. That’s where NACD comes in again. Bob has always given us just one or two more things to try. The suggestions are successful therefore making Tricia successful.

Tricia’s program now only takes about 2 or 3 hours a day as a supplement to a full school day. That’s a relief since we have always tried to keep our home life as normal as possible, including our older son’s and daughter’s school and outside sports. Tricia is a great supporter of their teams but really couldn’t handle playing them herself. Since team sports are not for her, we looked for something special for her and found Karate. This has done a lot for her self image, too B her friends all think that her Karate is really great.

Tricia is a very special gift from God and she has opened a fascinating world for us. We are very thankful that we have been blessed with such a special child and we are sure God has something very specific in Tricia’s future. NACD is helping us help Tricia reach her maximum potential and we know that they are an answer to our prayers.

Reprinted from the Journal of The NACD Foundation (formerly The National Academy for Child Development)

Reprinted by permission of The NACD Foundation, Volume 5 No. 5, 1984 ©NACD

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