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We help children who have X & Y Variations / Dyslexia / Developmental Dyspraxia |
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Family Stories Dr. Carole Samango-Sprouse, founder of The Focus Foundation, receives letters and emails from parents with updates about how their children are doing. She also hears from parents whose sons and daughters have recently received a diagnosis of having an X & Y Variation, Developmental Dyspraxia and/or Dyslexia. Following are excerpts from a few of some of those correspondence.Names and other identifying details have been changed to protect patient privacy. Letters have been edited for clarity and space.
From the mother of a 9 year old boy with 47, XXY and his success in school.
When the new semester starts in January, he will be mainstreamed in math (to an intermediate, not basic, class) and it is likely that he will be mainstreamed in reading by the end of the year or the beginning of next year! He actually has already met the criteria, but they want to take it slow and make sure he is successful in math first. The Vyvance has done him a world of good, he's no longer falling asleep at 8pm, his headaches have all but disappeared, and getting him to do his homework is much less traumatic. His chess rating has also gone up 400 points in the last couple of months, and he's taking home trophies from every tournament (tied for 1st place for his rating group for the 3rd grade in the National Grades championship). All in all, things are going well for Ben.
From the mother of an 11 year old boy with 49, XXXXY.
Were it not for your tenacity it may have gone under-diagnosed for years. We are so lucky to have you involved with our son's care. From the mother of a long-time patient of Dr. Sprouse:My son, Christopher, age 14 is 47,XXY. He was prenatally diagnosed, and has been evaluated by Dr. Sprouse regularly since the age of 4 months. He was placed in an early childhood special education class at the age of 4 and has had an IEP in place since that time. Chris is a 7th grader this year (2012), and is doing quite well. He made the Honor Roll (for the first time!) the first grading period, and again in the second. He was also chosen as one of January's "Students of the Month" by his teaching team. Even though he made the Honor Roll, the reading specialist confirmed that he still has problems formulating ideas and getting them down on paper. She has been wonderful about helping Chris show that he knows the material by using alternate testing methods when she sees that he is struggling with a subject. At his IEP Meeting recently, the reading specialist even recommended an additional accommmodation instead of reducing services. I had sent Dr. Sprouse's evaluation early in the school year and that helped her to have a better understanding of Chris' learning challenges. Through the years, all of Chris' teachers and educational support staff have appreciated recveiving Dr. Sprouse's annual evaluations so that they could better understand his strengths and weaknesses. Those evaluations have been instrumental to his current achievement. Chris has played soccer in the Spring and Fall in the county league for the last three years, and during the off-seasons, he attends soccer camps sponsored by the D.C. United (professional) soccer team. He loves it, which is something I didn't think I'd ever say about Chris and playing a sport. It has been quite rewarding to watch Chris "blossom" this year, with achievements at school and in soccer. It continues to be challenging for him, but I believe that he will continue to do well. As part of his IEP this year, the specialist worked with Chris on a Transition Plan. When she asked Chris what he wanted to do in the future, one of the things he said was that he wanted to go to college and study Math. More power to him! From the mother of a boy newly diagnosed with XXY:My son was two when we noticed some differences in him alongside other children. At the time our pediatrician was skeptical that there was anything wrong even though our child had speech delay, gross motor delays, sensory issues and social difficulties. She actually said to me, "You are thinking too much." I replied that there may be something tying all these symptoms together and demanded full testing. After the blood test my son was diagnosed with XXY. We soon went to see Dr. Samango-Sprouse. We live outside of the United States so travel and expense was no small feat. I have to say that seeing Dr. Samango-Sprouse was the best thing we ever did. Not only was she able to give us information about XXY, but she was also able to diagnose my son with dyspraxia (something we never heard of). She tested my son cognitively and physically and gave us syndrome-specific issues to target. Because of the lack of services and funding in our community, our son was being denied help because he was deemed "not severe" by professionals who knew nothing about XXY. Dr. Samango-Sprouse was instrumental in helping us access services. She spoke directly to our therapists and was able to convince them to double my son's therapy time. She was also able to speak directly to the issues XXY boys face. Now our therapists are motivated and better informed and we as parents are ecstatic with the results we have seen in our son after receiving help. I can't thank Dr. Samango-Sprouse enough. When we were being shut out of any chance of getting help for our son, she was the only one willing to advocate for him. Now, we have reports and testing that we can share with all of my son's doctors, therapists and teachers. Also, as parents, we feel better informed about how to best help our son through her support. I would highly recommend Dr. Samango-Sprouse and The Focus Foundation.
From the mother of a 4-year-old boy with 49 XXXXY:
A mother who learned of her daughter’s X & Y Variation through prenatal testing:
The mother of a boy with XXY reports on her son’s first day of kindergarten:
The following letter is a clear example of the desperation, sadness and confusion families experience due to the lack of accurate information about their child’s condition, and the dearth of specialists
who can help them. The letter shows how dangerously uninformed medical and educational professionals—and the public-at-large—are about X & Y Variations.
First, we were told by our ob/gyn that we should terminate the pregnancy because the baby would be abnormal and suffer many sexual problems throughout his life: Not a girl, but also not a boy, he said.
(I was 4-1/2 months pregnant when we were told this.) This was simply devastating to us. We’ve been told that issues of anxiety, severe depression, etc., in these boys can be very hard to deal with. Although
after speaking with several genetic counselors and a geneticist that’s apparently not always the case. Needless to say, I have been very sad and preoccupied with what we are going to do. The support groups and other information on the web have been helpful but so much of it is so confusing. Many websites say that these boys are either transgender or have gone through a sex change operation.
We’ve contacted about 10 pediatricians in our area and all say they’ve never treated anyone with XXY. The special education director had never heard of the condition even after working at the school
district for 30 years. If the condition is fairly common why are so few professionals aware of it? This last week we interviewed a pretty well known pediatrician in our area. He said he had to "read up on Kleinfelter's syndrome again" because he had never treated anyone with KS in his 20 years of
practice. This worries us because we'd like someone who treats KS babies and children on a regular basis. We have a loving and caring family. We are blessed with support from our community. We can handle whatever God sends our way. We want to be as informed as possible and have the tools to help our son
with anything he may need.
Note from Dr. Samango-Sprouse: Please help The Focus Foundation—and parents like these letter writers—by spreading the word about our work and by making a financial contribution. Early diagnosis, targeted treatment and public education are essential to the lives of so many children. |
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