Thank you for a fantastic conference, the information shared by the presenters was insightful, and will help us on our journey to better understanding the variations in Australia!
I have to say that I was not for testosterone at all. And then I went and saw Dr. Carole Samango-Sprouse this morning. And I learned all the life long benefits of starting the testosterone shots early and changed my mind. I can’t wait to give my little boy all the tools he needs to succeed, and I now understand the importance the testosterone shots plays in his success. Even if you’re skeptical, I recommend talking to her about it. It really has changed my outlook on everything XXY.
Our youngest attends a weekly social skills group with Dr Samango-Sprouse. She has offered guidance to his teachers and therapist in the school system. He has transformed. His speech has changed from a few babbling words to 3 and 4 word sentences. He attends a regular kindergarten class with a personal assistant at our local elementary school. Our oldest no longer hates school. Using a method of teaching prescribed by Dr. Samango-Sprouse, his reading, grades and confidence has greatly improved. Although we are pleased with their progress, I do believe their accomplishments would be greater if they had been properly diagnosed and treated at a younger age. A great deal of frustration could have been avoided with earlier diagnosis. I feel the intervention that Dr Samango-Sprouse has given us has brightened our children’s future. We are grateful that The Focus Foundation has been able to make this possible. For without those funds we would not have been able to continue this life changing therapy.
I came across an article this week in the Capital and just had to write and thank you again for all the help you gave Nathan so many years ago. He went from being a baby with a very uncertain future to a happy little 9 year old boy who loves school, swimming, art, and is always looking to try new things (like tae kwon do this fall!!) I used to look at him when he was a baby and only see the autism with occasional glimpses of the boy he could be if he was having a good day. Today it is the opposite–I see a happy little boy who displays only the shadows of his former self when he is having a bad day (thank god that is very rare now). Keep telling parents that there is hope and that things will get better with hard work. Enjoy the summer and again thank you for your guidance. Nathan has a full, happy, active life and we couldn’t be more grateful.
My son was two when we noticed some differences in our son alongside other children. At the time, our pediatrician was skeptical that there was anything wrong with our child, even though he 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. Sprouse. We live outside of the United States, so travel and expense was no small feat. I have to say that seeing Dr. 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 was able to test my son cognitively and physically and give us syndrome-specific issues to target. Because of 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. 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. 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 we as parents feel better informed about how to best help our son through her support. I would highly recommend The Focus Foundation.
Giving our therapists the opportunity to talk and share with Dr. Samango-Sprouse seems to have made them interested in knowing more about a population of boys that is passing through their doors undiagnosed.
I have a daughter who is now 12 that has 47,xxx. We found out that Lilly had triple x when she was 18 months old. We searched and searched for a specialist who could tell us anything about triple x and what lay ahead for our daughter. After several years, we found Dr. Carole Samango-Sprouse. She has been a god-send and everything she told us was right on the money. She specializes in sex chromosome disorders (i.e. Fragile X, 47,xxx, etc.) She has written numerous articles and is very well-known and respected in her field. I can’t say enough about her! She evaluates Lilly every year and tests her to see where she’s at grade-wise, if she’s falling behind, if she’s picking up new strengths, etc., and then she helps tweak her programming (i.e. how she should be taught) which is what we then use to go back and fight with the school over. Dr. Sprouse has helped us immensely with Lilly’s case conferences, IEPs, etc. The school is unable to refute it because there are no other experts out there (there may be more specialists familiar w/it now, but Dr. Sprouse has been studying/tracking 47,xxx girls for 20+ years). We started seeing Dr. Sprouse when Lilly was 9 – she does clinics all over the U.S. and abroad. Lilly was non-verbal at 5 and the school offered 30 minutes of speech per week. We fought and fought for more time and filed several due process hearings, but with Dr. Sprouse’s expertise and guidance we were able to get 4 hrs a week of Speech therapy (which is unheard of) and it has helped tremendously. Lilly is speaking fine for the most part and she is still getting 4hrs a week now that she’s in 6th grade.
I want to thank you so much for being part of my life. You may not realize it, but I draw strength from your spirit, I work harder because you believe in me. I hope you know that you make a positive difference in the world; I want you to know that your gift is to make others play larger and better and more passionately….that’s how change is made. Your ability to inspire people daily in both small and large ways makes a difference. You’ve made huge difference in my family’s journey for the last 15 years.
Guys. I can’t recommend the Focus Foundation enough to y’all. My dad, my XXY toddler (2.5 years old), and I flew out to the San Francisco conference from New Mexico and we learned SO MUCH! The speakers were experts in the field, very personable, and each had actionable strategies for XXY boys (and 48, 49ers too). It was such a change of pace from the lack of knowledge that we’ve encountered in NM. We have a supportive team behind us now, and it feels really great. <3