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.)

The post Williams Syndrome: Charlotte appeared first on NACD International | The National Association for Child Development.

For as long as I can remember, I have never liked running. I have always been poor at it. So since there was so much room for improvement, it seemed to be the perfect sport for me.

I took up running in February 2011 at the old age of 33. My fourth baby was 7 month old, and I was ready to get my body back. I made the common mistake of a newbie runner: too much too soon. I injured my knee so badly after my 1st 4-miler that I swore I would not run again. It took over 2 weeks for the pain to go and another week to walk without limping. I switched to power walking. I was doing well. It was much easier on my joints. I walked 3 times a week, no more. I took a long break in Europe over the summer to take my kids to my parents’. I had lost all the weight of ALL my pregnancies. In July I went for an 18K walk with my dad in Belgium. It was good; I felt strong. In September, back in Florida, I took up my walking regimen again…and I put a little running in it. It felt natural somehow to speed up things with running. And the “marathon bug” started. I got to reading stories of long distance runners…and I liked it. I signed up for the 2012 ING Miami Marathon. My aim was to walk it and maybe jog a little of the distance if I could. I looked up training programs on the web, bought books. I even pushed my husband into it…and he, reluctantly at first, but positively then, followed me into my “running ideas.” I put more and more running into my walking sessions in the fall to the point of not doing any walking any more; I just ran. I got used to the YMCA treadmill when the Florida heat was overwhelming. In October I signed up for the early December Rock and Roll Miami Half Marathon. Husband was signed up too (by force). By November I could run up to 10 miles…boy, I was proud! December race came. I was thrilled and finished my very first Half Marathon in 2:26:49! Husband was 43 seconds ahead of me…but I ran almost all the way, with just 2 or 3 small walking breaks. Victory!

December was spent increasing my distances. On my very first long distance training 17-miler, due to poor shoes and “too much too soon,” I badly injured my foot. Here I was in early January, 4 weeks before the race…and I was not going to make it. Sports doctor (the same who treated my hip bursitis in November with a very nice shot right in the bone) put me on anti-inflammatories and physical therapy and told me I would not run my race…but he did not know me. I ran anyway. I always go head first; I am no quitter. However I ran the Half not the Full Marathon. It was a little deceiving, but I knew I was far from ready to tackle the dreadful 26.2 miles. On race day, ready for the 13.1 miles, I went off in the wrong corral, far too fast at a 9 min/mile pace…but did okay with a final at 2:23:22, a full 3 minutes faster than the previous month. And that’s a big deal for an injured newbie runner. And I was hooked!

I signed up for the 2013 race, this time trying hard for the full one.

I made sure to stay fit, doing yoga, routine low-mile runs and even kung-fu lessons with the kids. In May 2012, after a “butterfly kick lesson” at kung-fu, I landed from a flying position hard onto my side and broke my shoulder. It took me off from exercising for 6 long weeks. In July in the middle of a boiling summer, I was ready to start training. From July 2012 to January 2013, I cautiously built up my mileage, avoided severe injuries with ice, stretching, ibuprofen, rest days, cross-training. I surprised myself with a 26:49 5k race performance at a local event at the end of September, winning 2nd place of my age category–quite a confidence boost. My long distance runs were good, my Fall Rock and Roll Half Marathon race in November 2012 time improved to 2:13:13. I did pull a hamstring later on during long runs, but I gave it time to heal and resumed my runs.

My level of stress with 4 tiny kids -2 homeschooled girls and 2 preschooled boys- and increasing physical exercise was high; but running relieved it. My mood was affected on my non-running days. Running was my way out of stress, my “me-time,” my under-control activity. My body changed too. My legs were firmer, my abs looking good, my heart rate surprisingly low. Running had, against all odds, become my best friend.

But it had to be more. So my husband and I started a fundraiser. One of our kids has a genetic disorder and has overcome many of her challenges with a strict daily stimulation program for years with us at home, under the direction of a sensational association whose sole purpose is to help children achieve their full potential. So we thought it was a good thing to do to run and raise funds to say thanks to those great people who helped us rehabilitate our daughter and helped us change the course of her life.

My daughter and my daughter’s condition have pushed me into being more than a regular mom. I became a special educator, a physical therapist, a speech therapist, occupational therapist, writing specialist, reading coach, brain-flexibility expert (but not as much as my husband), a tough, believing mother. And that sure helped the transition to long distance runner. I logged in thousands of teaching and stimulating hours for her. I went through days of non-progress and plateau, hoping for a better week. And it always came. I kept on hoping and hoping and pushing until she could do the things she needed to do. Not until she got them right; but until she could not get them wrong. And she is a living success story and a source of inspiration for many.

But anyway, race day came. I was so ready. I had given myself a 4 week taper period. My husband had very much neglected his training but was willing to try to simply finish the race. I, on the other hand, had a different objective: I wanted to run it all, no walking break. Possibly under 5 hours if I could.

The night before, we slept in a posh super comfy hotel in Miami. I took a long relaxing bath, a solid carbs-full meal and went to bed at 9/9:30 with the alarm set up at 4:00. I slept well, surprisingly. Morning breakfast was ready in the cool-box…oatmeal, banana, raisins, Gatorade, pretzels…yuck for my morning taste buds, but yum for my muscles and soon-to-be-exhausted body. We joked, warmed up, and stretched. Protected our feet with Band Aids, spray, and our skin with anti-chaffing. Dressed up. I looked in the mirror: I feel ready, I feel a little anxious, I feel like a runner. I am a runner.

We get out and start with the flock of other runners towards the start line on Brickell Avenue on a beautiful Miami day. It is not cold enough…almost 70. It’s humid. I knew it was going to be like this. I am not scared, I have trained in Florida, this is what I am accustomed to. I would have loved a cold front, but this is a warm year and we’ll just have to put up with it.

Then something I had not prepared for happens.

Before the race, I hugged my daughter Charlotte for making me so strong and allowing me to achieve such a grueling athletic performance. On race day, I received a very big gift. One I could call: ” And with the running, came the healing” ..in a very unexpected yet beautiful way.

As I walked to the starting line, my shirt proudly said, “Mom of 4. My special-need kid rocks.” I realized how much I, as a mourning parent -you know, we all have to move on past the loss of a “perfect” child- needed this final step in my healing. Yes, we helped Charlotte overcome many of her challenges. Yes, she surpassed all of our expectations. But there was one thing I forbade myself to do for a long time. Maybe out of shame, maybe out of guilt, or to protect her, or for reasons still unclear to me: I did not want the world to know that she had a genetic disorder. I did not even discuss it with many of our family members. I kept it in hiding from a lot of people I knew. Yet, there I was, walking around 25,000 random strangers letting the world know that my child was different. And that was okay. That was more than okay…that was my very personal running leitmotif. Many people out there were running for cures, lost ones, personal records…and I was running with a bold statement about my own daughter on my shirt, finally letting go of the shame, getting an immense pride out of it. And guess what, that statement healed my soul and also made sure I would run all the way. And for once in my life, that “special-need” label did not drag me down or expect more of me…it made me take off, it took me one step above them all. And with the running came the healing. Final step of a long mourning process, first step of a great marathon race.

We are placed by speed at the start line, but there are so many runners that I am in a random corral. It does not matter; I know I have to start slow. I’ll keep my pace. Husband is ready, next to me. I close my eyes, I breathe calmly…I can do this. The crowd is thick and loud. The atmosphere is hectic. But I am calm.

Off we go, my music is on, my iPod is set on my marathon list, especially made for the event. I start my run, steady, light. Mile 1, over 11 min. Slow is okay. 5K, 33 minutes. I am doing fine. Husband is there. He lost all of his food on the road already, bummer ! I give him some of mine; that’s okay. I keep going, I run up the 1st bridge effortlessly. I have trained for this, my body knows what to do. Mile after mile we reach the Half Marathon finish (13.1 miles-21km), where 19,000 runners end their journey and we, 7,000 Full Marathoners, continue. My Half Marathon time is 2:28. Conservative, but good. I feel great. The crowd is gone, it’s only a couple of runners ahead of me and in the back; the street feels wider. Almost at mile 14 I see husband on the sidewalk, he is reaching for his muscle ice-spray. He is hurt. I help him, I spray my knee and my hamstring in 5 seconds too, just in case, but hurry back. Husband is struggling. He tells me to go on, he says it is so hard but he will finish, just for his daughter. I encourage him, I tell him he can do it but I move on as he eases on in a walking pace and I don’t want to walk one step. I ate at mile 6 and 12, I managed my hydration cautiously. I am confident. Mile 15 to mile 17 are tough. It is getting hot. I have some doubts creeping up at the back of my head…no, no, no, stay away you doubts, I will do this. I recall pictures of my daughter at birth as she struggles for air, as a toddler as she creeps up on her crawling ramp…I have to go on. I have to honor the donations to my fundraiser. I can’t walk, I will be so upset later if I do. My pace is regular. Mile 18. Yes! I tell myself to keep it up to mile 20, and then we’ll see. It takes forever to reach mile 19, it is warm, I pour glasses of water on my face, down my neck. People cheer, I take their energy with me. The cereal bar I painfully swallowed at mile 18 is starting to hurt my stomach. I feel a stinging in my right buttock but no cramps. Mile 19 is there-I did it. My longest run was 19 miles…now it’s all Terra Incognita for me. I can do it to mile 20, I keep pushing.

Mile 20. Mile 20… I look at my watch. I know I can’t break 5 hours, it is going to be real tight. But I can run the whole thing, and that will be my victory. Mile 21 is going to be for my parents. Mile 22 is for my brother, for my husband, my close friends. The cheering is infectious; a smile is starting to grow on my sweaty face. It is windy at some places and the glare of the sun is blinding. Mile 22 and I did not hit the wall. I feel strong, tired but steady. I am going to run this thing all the way. I pass loads of people walking, sitting on the asphalt, some are waiting for medical help, some have their heads between their knees. But most of us keep going. I pass by some runners who look more experienced than I am and yet they are walking. “You are still running,” I tell myself. Mile 23, from here on, it is one mile per child, starting with my eldest, smart Charline. Mile 24, I made it. This one is for my monkey boy Owen. The spectators are everywhere, this is fantastic. I look up, I smile, I smile. Mile 25 is for my son James. Running this thing can’t be worse pain than delivering him two and a half years ago. The agonizing pain of child labor was way worse. Strangers are cheering on me; I have a huge smile spreading to my ears, even on that last killing bridge. I speed up a tiny bit and hold my form proudly. This is mile 26 for Charlotte. The longer one, the toughest one. It is all for her. The 0.2 are just for me. Because I am a marathoner now. Final stretch, I see the Finish banner, people are screaming cheers, I am finishing a Marathon running and am proud. I am a winner, I feel light, strong, confident…I cross the line both arms up with a giant beaming smile on my red face.

My watch reads 5:02:49. My pace was a steady 11:30 min. per mile from the beginning to the end. I have certainly not broken any record here…but I have accomplished a race only 1% of the world population has ever participated in. And I did NOT walk.

I pick up my medal, my banana, and my water, and I walk to a shaded area. Nobody is there to congratulate me. They are all in Europe. But my joy is immense, and I keep my family’s encouragements in my heart, and I know they will share my pride equally. I sit down, stretch my legs, look at the beautiful blue sky. My body is aching…but I thought it would be worse. I let my mom and my dad know about my accomplishment on my cell phone. Then I made it to the finish line again. But this time as a spectator to wait on my husband.

During my long training, he laughed at me more than once when I was trying to explain to him the virtues of progressive mileage build-up, cross-training, carbs eating, long distance runs…He often said he could do it without all those miles and that he would beat me by far. I knew he could not. But I knew he had enough capacities to finish…and to beat me if he trained. Only he didn’t. I spot his bright orange shirt in the finish stretch, he is so struggling, his face is closed with pain. But he is jogging, not walking. He is a marathon runner all right. I scream his name, but he can’t hear. I snap a few pictures as he crosses the line: 5:36:49. He blows a kiss to the sky for his daughter. She can be proud; it was tougher on him.

That was my first marathon–a surprisingly healing and exhilarating experience.

I’ve already signed up for next year’s!

Related Links

Bob’s Blog – It’s a Marathon Part 1

Bob’s Blog – It’s a Marathon Part 2

Bob’s Blog – The Light at the End of the Marathon

Original NACD Family Testimonial: Charlotte

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

Reprinted by permission of The NACD Foundation, Volume 26 No. 1, 2013 ©NACD

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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.

The post Williams Syndrome: “Charlotte” Not Held Back by Williams Syndrome appeared first on NACD International | The National Association for Child Development.

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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