Helping to understand Potocki-Lupski Syndrome (PTLS)

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Feeding: The struggles. The Changes

PTLS Fact of the Day: Feeding…the struggles, the worries, the changes. When our children are little, we tend to have them on a schedule of sorts, and offer food every few hours. The worry begins. However, our children tend to spend the first few years of their life not really interested in eating. As they grow, we offer foods at mealtime, and find something they like (with yogurt being on the top of the list, with pasta next in line), and we worry they are not eating a enough of a variety. In late toddler years and into the teen years, many children find that food tastes really good, but still not interested in a wide variety, but that is ok, they are eating. In the teen and adult years, there will be a few who still are not big eaters, and most would be perfectly happy to eat the same foods every day, but will often be willing to try new foods. Here is where the change begins. A child going from eating very little to not knowing when to stop when the stomach is full. This is when you may find yourself telling them that they have had enough to eat at that meal. This overeating can cause the reflux (mild to severe). The one constant through the years is the fact that the children do not always ask for, or seek out food, when they are hungry. It may require someone to offer them food, remind them, or place it on the schedule of routines for them to eat. This is all a part of the hunger center of the brain in action and over-activity.
To try and help this- 1. Offer small meals or snacks frequently 2. Place snack foods on tables close to where they are playing so they can grab them to eat 3. Do not worry about the variety of foods, but offer more nutritious options. 4. Be aware of the way the food looks or smells, which may trigger the aversion of the food. 5. Include them in the meal process to bring about excitement about it. 6. Place it on a routine board or schedule for them to see.
Meals can be a huge source of stress and worry. Understanding that children, with and without PTLS, go through phases of eating and not not showing an interest in eating as a regular part of the childhood development process. They will teach us with great patience, and celebrate that we learned something about them through their actions, behaviors and beautiful smiles.~J.Smith-Centeno 2015


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


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

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.

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