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
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!
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
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.
This difference in abilities will come with some challenges, some frustrations and yes, many tears. It will also come with joys, laughter and unique situations. Most of the struggles will come with the lack of understanding and discomforts of the disabled and special population by the community. As Christian will tell you, “I do not have special needs, and I am not disabled, I am just me…special!” As he told a group of 200 medical students and doctors, “having special needs is not like living in hell or anything!”
We are parents of a very special community. Our membership to this community is one that most did not ask to become part of, and may struggle with for years; however, all parents will find that it is full of extraordinary and loving parents of extremely happy children. Children who open our eyes to the way the world should be; no stress, no peer pressure, no teen pregnancy, no alcohol and drug abuse, no traffic tickets. We have been given the job of gardeners in God’s beautiful “Blue Rose Garden”. This is God’s very special garden that he watched over and smiles at their incredible beauty. We, as parents, are responsible for tending to these roses and bringing out their magnificence for all to admire. Tending to such delicate, yet extremely important, flowers is not an easy job. It can be a tireless job filled with great concerns, but it is the job we have been given. We have the ability; we just have to relearn how to grow a blue rose instead of a daisy.