Our daughter Sanjana was diagnosed with a rare chromosome disorder at five. At around two and half years she took her first steps, and her first words were only after she turned 5. Despite intensive Speech/ OT/ PT, her milestones came painfully slow.

In the following years, she went through inclusive schools; and by the time she was fifteen started attending a pre-vocational skills center. Her pace of progress was painfully slow, but steady, nevertheless.

She was still not reading or writing without substantial help. The snail-paced progress and constant repetition were tiring us both out. It also affected us emotionally, not just physically.

When she was around seventeen, a compassionate fellow mom shared with us about her experience with NACD. We promptly went online to read details and case studies, and with a lot of hope in our hearts, contacted the NACD team.

After the first evaluation, we realized we were working truly hard to teach her, and she was working very hard to learn—but her brain was not ready for any learning! Her processing was at an extremely low level, and it was as if we were simply barking up the wrong tree.

Then came the program. At that point, I was also running a full-fledged design studio and had my hands full. I kept thinking about how I was going to implement this with our already overflowing schedules. But hope is powerful. It makes you stretch and do things you may not think you could do otherwise. We started the program, and just then covid hit India. Suddenly I was at home all day, her Center went online, and I could see her learning and her struggles, and we could manage our time better.

After regular rhythmic work daily, we saw growth pace had picked up. We saw that the otherwise snail-paced progress changed to seeing significant change every 4 months. Her processing level went up substantially and so did her learning! Improving her processing and acing the math facts gave her a much-needed base to proceed further. The reading, which was an activity she would dread and despise because of her intense struggle to perform the activity, changed to her enjoying the process. She still needs help to read, but it is with less struggle, more willingness and joy.

I now realize the value of a home program and chose to sell my design studio to be more available for Sanjana. While she is progressing well on the academic path, what helped us most is NACD’s focus on chores, independence, and skills. She’s independently doing many chores at home, picking up most skills needed for independent living.

We honed her love for arts and crafts into being a soap artist. She makes lovely natural artisanal soaps which we help her sell through her website www.thebluelephant.in. She’s independent in making soap, inventory logging, and many other tasks around it.

However, her biggest love is coffee and food. She is now a trained barista who makes amazing coffees and is currently pursuing a baking course. Her coffees are popular in the neighborhood, and they often drop in or order her coffee on weekends. Her signature is Orange Coffee!

We are constantly looking for creative ways to build skills in the most normative ways possible. Towards this, Lyn, our coach, gave us a fabulous idea to implement a home economy system where we transact at home to buy food and coffee, etc. This is slowly building her confidence and literacy around money.

In recent times, everyone who meets Sanjana can’t help but notice the change in her confidence, communication, comprehension, and independence.

As parents, what boosts our morale the most is the increased pace of progress and her ability to manage emotional outbursts. There was a time when meltdowns were frequent and would turn violent along with crying and screaming. Now not only have they dramatically reduced in number, but they are also more manageable. She can communicate even through those difficult moments and self-regulate to an extent. It is such a huge relief that they are no longer moments of insanity.

Lyn, our coach, and the team have just been phenomenal. Her advice and motivation keep us going on the right path. We are blessed to have them in our lives. Blessed to have found this wonderful program—NACD. And blessed to be able to hold this wonderful dream for Sanjana’s future of her living an independent, dignified life.

            • Reprinted by permission NACD Newsletter, July 2023 ©NACD

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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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I have always been moved by art—dance, music, sculpture, painting, and culinary creations. It excites my mind and heightens my senses. Imagine my joy when I was presented the opportunity to become the coach of a very talented young woman from Christchurch, New Zealand. Harini Weeratunga came to NACD at 7 years old. Her mother, Aruni, stumbled across NACD while searching for resources for Harini, who has a XXX chromosome pattern. Aruni has told me, when speaking about her family’s journey with NACD, that, “They showed me how to open doors…to have no limits in exploring opportunities and how to celebrate my daughter and lift her up for all the gifts and talents she has. Not to be bogged down by negatives…there was a way to circumvent everything.”

By the time I had the honor of working with Harini and Aruni, Harini was a very diversified artist. Aruni has said, “It was evident from the beginning that Harini loved and enjoyed color. So she started with color by numbers art, which over the next few years grew to be more complex.” Harini has drawn, painted with many mediums, become an accomplished weaver, was accepted into the weaving guild of New Zealand, and is a force in the kitchen. I am always excited to see an email from Aruni, because I know I will get to see Harini’s newest creation.

Last week, I got a real treat! I opened an email to see this beautiful mural, a mural painted on the local special needs library in Christchurch, New Zealand that Harini and a fine arts student, Rebecca, worked on. Aruni tells me that Rebecca did most of the design, but together over the course of 4-5 days, Harini and Rebecca created something very special.

I am sure there will be a time when we share Harini’s full journey with you, obstacles, challenges, and tears. But, today I just want to celebrate her!

Harini, I am awed by you! I am moved by you! I celebrate you!

NACD Newsletter, May 2018 ©NACD

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Update 2019!

Harini has continued to create art and express herself through her very unique talent. This year she was selected as one of 30 finalists for the IHC Art Awards in New Zealand. Out of the initial 400 entries and the 30 finalists, Harini placed 4^th overall. At the Gala event her beautiful floralscape auctioned for $650. The impactful way she uses color has enriched my life and I know that she has enriched many lives around her. Congratulations Harini! Thank you for sharing your gift!

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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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