The Great Imitators

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Are you a parent wondering what the best way to teach your child is? Are you a teacher who has the pleasure of having one of our children in your class? Our children are wonderful at mimicking those around them. They will begin by sitting or standing off to the side observing. Once they can pick out who the active children are, and who the calm children are, they will begin to engage. They will gravitate to the once who are calmer, as they are not sure how to protect themselves when another child begins to engage in an aggressive manner.

They will observe the good, the bad and the ugly. If they are in a room with “typical” children, you can expect them to improve in learning, speaking, and increasing in their activity. They will require a firm routine and predictability in their surroundings. A parent will always know what happened at school, because the child will line up their dolls or toys and begin to teach them, almost word for word, what the teacher said and what the children around them were saying.

Teach through actions. Learn through observations.


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


Facts on PTLS

Facts on PTLS by: Julie Smith-Centeno (Founder and CEO)

Julie has been studying children and adults with Potocki-Lupski Syndrome for 28 years now. Her passion is in observing and compiling common characteristics and behaviors of the children as they progress through life. then present the information to families, doctors, scientists and educators to help educate and raise awareness.  She has made it her mission to make sure reaches all parts of the globe educating all so that no child, or family, is left to wonder. She will make sure they have knowledge and tools to help the child reach their greatest potential in life.

Fact handout mpn 2015

Submucous Cleft and Speech

PTLS Fact:

Some parents have asked what a submucous cleft palate is. and do all the children have this. Let me see if I can help explain. First, no. Not all the children with PTLS have this, however, it has been seen in some of the children. What is it? In the first 8 weeks, when the embryo is developing (1st 8 weeks of pregnancy), the palate (roof of the mouth) develops. Sometimes the left and right sides do not come together, leaving a small gap. The skin closes over the bones, so it is not seen, but it can be felt. One sign that is seen when you look in the back of the throat. There is a bit of tissue that hangs, called the Uvula. The length of it has been linked to PTLS (being too short). However, if it looks like a “W”, called a Bifid Uvula, it is a sign of a Submucous Cleft Palate. This can also cause a larger gap in the back of the nose/mouth area (just above and behind the Uvula), called a Velopharyngeal Insufficiency, so the Adenoids should not be removed or it can cause the gap to be larger. The cleft can be surgically repaired. So, next time your baby is opening their mouth, or crying, take a look in the back of the mouth. If you are concerned, ask your child’s doctor to check. I hope this helps. ~Julie Smith-Centeno

Swallow Function Study

Studies conducted years ago on PTLS kids showed that the duplication could cause hypersensitive nerves in the back of the throat, a problem with tongue movement (interfering with clear speech and brings about very noisy “smacking” while eating), clearing of the throat, and gagging. It is suggested that if the children are showing difficulties, they have a “Swallow Function Study” conducted to look at the structures and any possible delays in swallowing of food and liquids. This test is conducted by a Speech Pathologist in an x-ray department. If you have any questions about this, please consult the PTLS individual’s physician.

 swallow function pic