Oh the Nerves!!!

PTLS FACT for Today:
Nerves, Anxiety, Oh My!
Anxiety and nerves can get the best of our children and adults. Once it sets in their mind, it is very difficult for them to stop it. Anxiety can present itself in many ways; crying, increased stimming, and vomiting. Once they vomit, they are able to regain control, release the anxiety and refocus. Observing the cues, and looking for the trigger (which can be seen as something small or insignificant to the parent,family, friends or teacher) can help this situation. Often times, once the trigger is planted in their mind, it is not able to be easily removed or redirected until they can follow through with the needed release, so they can process this in their way, not so much in the way many feel they should. It is the way their beautiful minds work, and all they ask is to be validated, help with calming the situation and respected. What can you do? Watch for the facial cues they will give. Look for the triggers and prepare them to reduce the anxiety, or simply avoid them. Help them learn to avoid their triggers, or learn coping skills to help them through.~Julie Smith-Centeno 2010

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The Love for the Outdoors

Studies have shown that our children thrive on an enriched environment. The fact is, our children with PTLS love the outdoors! Hiking, walking, bike riding, swimming, playing soccer, jumping on trampolines, riding horses, snow ski, riding scooters, or just going for a stroll, our children tend to not only build muscle strength, but build confidence, increase in learning, thrive and develop in so many ways. Time in the outdoors is good for everyone! robcriding for PTLS ResearchTateThomas

International Awareness

  The PTLS Foundation is GOING INTERNATIONAL!!

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A warm farewell, good luck, and have fun to our President Julie Smith-Centeno and our famously favorite Ambassador, Christian, as they head to Stockholm, Sweden and England over the next week to educate doctors and families about PTLS. These doctors reached out to our very own Dr. Lupski and he recommended that Julie and Christian go on this tour to educate, inform, Q&A session, etc. We couldn’t be more proud!! We are all very excited to hear more and see pictures of this amazing opportunity and adventure!! This is one of the many reasons why the PTLS Outreach Foundation was created: to educate everyone in the world about PTLS! Go Julie and Christian go!

Christian off to UK

Anxiety for all

PTLS FACT: Anxiety and nerves can get the best of our children and adults. Once it sets in their mind, it is very difficult for them to stop it. Anxiety can present itself in many ways; crying, increased stimming, and vomiting. Once they vomit, they are able to regain control, release the anxiety and refocus. Observing the cues, and looking for the trigger (which can be seen as something small or insignificant to the parent,family, friends or teacher) can help this situation. Often times, once the trigger is planted in their mind, it is not able to be easily removed or redirected until they can follow through with the needed release, so they can process this in their way, not so much in the way many feel they should. It is the way their beautiful minds work, and all they ask is to be validated, help with calming the situation and respected. What can you do? Watch for the facial cues they will give. Look for the triggers and prepare them to reduce the anxiety, or simply avoid them. Help them learn to avoid their triggers, or learn coping skills to help them through. ~J.Smith-Centeno

Adults nov2015

Live, Laugh, Love!

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Life with our children and adults with Potocki-Lupski Syndrome is one filled a range of emotions, with the greatest being love! Potocki-Lupski Syndrome is not a disease that one would catch if they came close, nor will it be the of cause their death. PTLS is a disorder that is just a label the medical and education professionals use so they can follow guidelines put into place. This chromosome disorder is one that gives our children the “Happy Gene” that brings about a love for life, and show all those around them the way life should be lived.