When Jennifer Pastiloff gets her yoga students with disabilities into the Warrior 2 pose, she instructs them to say, “I am a beautiful warrior.” Jennifer Pastiloff, an LA-based yoga instructor, developed Gifts and Miracles Everyday (G.A.M.E.) Yoga when her nephew was diagnosed with Prader-Willi Syndrome and she saw that he copied her poses. Her classes use meditation, core exercises, singing, and affirmation. Currently G.A.M.E. serves just a few kids, but Pastiloff hopes that her grassroots non-profit project will become nationwide. She is currently working towards having a “cohesive team that will be able to mobilize easily and work throughout Los Angeles."
Read original article: LA-Based Yoga Teacher Jennifer Pastiloff Launches G.A.M.E. Yoga for Children with Disabilities
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Riding Therapy
Aug 20, 2007 by AnonymousI have had such tremendous luck with rding therapy. My son (Prader-Willi Syndrome) has been up on a horse since he was 1 year old. At three, he can ride in jump position for 20 minutes (which says a lot about his strength and balance!). He now receives hippotherapy twice a week.
There are many places where you can get riding therapy. I think it is worth calling your local stables and seeing if they can make recommendations. To see an example of a hippotherapy riding center, look at the Web site for the SpiritHorse Therapeutic Riding Center (www.spirithorsetherapy.com).
SpiritHorse Therapeutic provides free, private equine-assisted healthcare in our award winning programs to over 450 children with disabilities each week at our facilities just north of Dallas, Texas. One hundred-sixty of these children have been diagnosed with autism spectrum disorder. We provide healthcare rather than the customary recreation the therapeutic riding industry is known for. We have developed eleven specific methods for intervention with autism and an instructor who is our autism specialist. These methods are based upon the elements of Alternative Behavior Analysis (ABA), the Developmental, Individual Differences, Relationship-Based method (DIR/Floortime) and the knowledge that specific physical activity can create neurological changes. We have a distinct advantage in crossing the first hurdle of DIR/Floortime which is finding something with which to engage the child. Children love ponies. We have been very successful in developing experience sharing with the rider, their parent, the pony, and their instructor. One beautiful day this spring Nathan (a five year old boy with autism who has learned to speak since coming to SpiritHorse) was riding Fudge along the trail with his instructor Nikki leading and his mom walking alongside. He reached out and took his Mom's hand and said: "I love you mommy". We believe that he did this because the experience was so wonderful that he just had to share it. When his Mom regained control she tearfully said: "That is the first time he ever told me he loves me". These things happen often at SpiritHorse.Using these methods we have developed, we have heard thirty-one children with autism speak their first word on one of our ponies. We have discovered that our riders with autism prefer to turn left rather than right. Our medical advisory board is of the opinion that this is because the right hemisphere of the brain develops first and when the left hemisphere starts to develop, its development is delayed with the onset of autism, and of course the less developed left hemisphere controls the right side of the body. Incidentally, language comes from the left hemisphere and this developmental delay of the left hemisphere is the reason that many children with autism have delayed language.We performed a pilot study with five riders with autism doing a sitting trot in a twenty foot circle a total of 60 counter-clockwise and 60 clockwise revolutions. We recorded only two incidences of unbalance in the counter-clockwise direction and a total of twenty-eight incidences of unbalance in the clockwise direction. We also noticed a significant number of negative non-verbal reactions in the clockwise direction. After twelve weekly lessons, all of these children were balanced in both directions with no negative non-verbal responses. Our medical advisory board is of the opinion the we are building synapses (circuits that make the brain function) in the left hemisphere through the work in the clockwise direction, and thereby reversing autism. We also performed a study of five of our children who do not have a diagnosis of autism and they were equally balanced in both directions at the outset.Additionally, we conducted a pilot study by having five children with a diagnosis of autism weave in and out of a line of traffic cones. We found that these children missed five times more right turns than left. The left hemisphere, the side most affected by autism, did not respond well on the right turns. Very interestingly, we noticed a two to three second delay in the movement of the right arm when turning right, enough delay that a cone was often missed. After twelve weekly lessons, these children missed very few turns and neither direction was predominate. Very interestingly, the delay in the movement of the right hand for right turns disappeared. Our medical advisory board believes that we are reversing under-connectivity with this exercise.Following the lead of Temple Grandin Ph.D. an individual who has been dagnosed with Asperger's and who invented the "squeeze machine", we use riding safety vests adjusted very tightly to help our riders with autism who have difficulty in regulating. These vests are very different from the weighted vests often used for children with autism. The weighted vests place pressure on the shoulders, while these vests are adjusted to place pressure on the trunk, more like Dr. Grandin's machine. For those with this symptom of autism the results are often dramatic.The impact of our methods for children with autism has been under study by the University of Texas Southwestern Medical School for over one year. Dr. Janet Kern, assistant professor of their Department of Psychiatry commented recently: "The preliminary results are excellent". SpiritHorse has just reached an agreement with the University of North Texas Biofeedback/Rehab Department to perform EEGs and brain mapping on our riders with autism before and after each lesson. Through these tests they can objectively measure many brain functions, including under-connectivity. They will also measure rhythm using the Interactive Metronome. A recent study showed the development of rhythm to be an intervention with autism. We develop rhythm to a maximum degree in our riding program. With these measurements we hope to further refine our methods and develop additional methods for intervention with autism. We also have plans to provide free training to therapeutic riding instructors from around the world to develop autism specialists that will change programs at other centers from recreation to healthcare.SpiritHorse was awarded the coveted Dallas/Ft Worth Alliance for Healthcare Excellence "Servant Leadership Award" for 2006 for: "Thje highest quality, affordable healthcare in the North Texas area". The award was won by Baylor Hospital Systems in 2005 and Parkland Hospital in 2004. We are very proud to have been recognized by North Texas health professionals for our work with children with autism. Charles I. FletcherFounder/PresidentSpiritHorse Therapeutic
Marriage
Sep 24, 2006 by AnonymousI have had to think lately about how much stress is put on our family and social relationships because of the issues that PWS brings. Relationships can be hard enough under the best of circumstances. Add the stress of all the PWS issues we deal with, the responsibilities of family, job, community, and even self, and it is quite a lot to deal with for any and all of us. What's more, for the most part, we tend to deal with this in silence. We keep what is in the family in the family. From experience we know that, except for those precious few souls who patiently hang in there with us, most people glaze over when you try to talk to them about your life. After a few glazings, we learn to keep it to ourselves whenever we can. So, sometimes, the pressure builds up within the family and the bonds there are not always strong enough to withhold this pressure.
I have had this on my mind lately because of what we have seen with some families here. For the last several years, there have been three other couples who we have been, at least loosely, involved with, all families of children with special needs (not PWS). Over the last year, we have seen all three of these families go through divorces. It's chilling to me to see how a once-functional family has been shaken to the core, at least in part by the furor of a diagnosis. This is not to say that the diagnosis caused the divorces, just that it was an important factor.
When a family receives a diagnosis like PWS, it's an emotional tsunami and when the waves are gone, some of us pick up and rebuild and others never do. Others put their houses back together, but they are not strong enough to withstand the following storms, even though they don't compare to the original.
I realize that all of this is not about alternative approaches to PWS, but when I think about it, maybe it is. I believe that the single most important factor in the progress of a child with PWS, or any child for that matter, but for our purposes here, a child with PWS, is a strong, stable, supportive home life. That doesn't mean it has to be with the traditional mom, dad, and 2.2 children. It does mean that whatever the structure of our homes looks like, stability has to be our top priority. In order to provide stability for our children, we have to have it for ourselves. We cannot give what we do not have.
What I'm writing to say is that we all need to be mindful of our stress levels and try to find ways to reduce it in whatever ways we can. The cost for not doing this is way too high. The last statistics I read said that the divorce rate in families with children with special needs was unbelievably high. We know what a toll that stress takes on our health. Let's commit ourselves to keeping a close watch on our stress levels and doing whatever we can to keep the pressure from destroying our marriages, our relationships, and our health. We tend to go along on auto-pilot assuming that if we just don't think about a problem, it will not come back to bite us. Knowing the fault of that logic, we have to remain aware of those things that are stress-producing and of the effect they are having on us and all those we love.
I'm sure nobody else needed this essay on stress management and relationships, but I just needed to say it. I guess it's one of the ways that I handle my own stress.
It might be interesting to talk about ways that we as parents manage our stress. I know I'd like to hear about it. Any takers?
Retrieved from "http://www.pwsnotes.org/Marriage"
Artificial Sweeteners
Sep 24, 2006 by AnonymousArtificial Sweeteners
I know that discussing artificial sweeteners is one touchy topic for many families, especially when PWS is involved and our choices are so limited. I want to write about our latest experience with Erin and Splenda, not to add fuel to the fire, but in case what we have seen rings a bell with anyone else. Some of us use artificial sweeteners w/o problem and others of us don't. I'm not giving direction to either group, just our experience with Erin.
In theory, using Splenda or others is ideal. The calories are low, and so is the cost (at least compared to things like xylitol). We've stayed away from all of them but decided to give it a try when we were going through a time when a situation arose when we needed to increase Erin's liquids dramatically. We tried to use a little Crystal Lite lemonade every day. I used the bottled kind and even diluted that. Within a few days, we saw major changes in behavior. She became irritable, inflexible, and all-around unpleasant. After a wash-out from the Crystal Light, she returned to herself again. This is not to say that she still doesn't have a flare from time to time, but the intensity and frequency of her meltdowns were markedly different. We won't try that again!
We have other options. We didn't have to even try Splenda, but the convenience and cost were appealing. What we saw from those days was that it was definitely NOT worth it for us. It may well be that only a subset of children with PWS are sensitive to this or that, but it might be worth considering if you are concerned about the type of issues we saw with Erin. Again, before anyone takes offense, I am not evaluating anyone else's decisions, just describing our experience in case it might benefit someone else.
Retrieved from "http://www.pwsnotes.org/Artificial_Sweeteners"
Flexibility
Sep 24, 2006 by AnonymousFlexibility
My son is now 10 years old. He is the youngest of 6 children. When he was born - any given day - one child or another would forget a practice a party or other such nonsense - sending any schedule we had right out the window. My husband travels extensively - has for 14 years now - so inflexibility just was not an option for us.
Dinner is never at the same time - and neither is breakfast for that matter. We have never as a family been very good at adhering to a strict schedule. When they told me my son would be inflexible - I could do nothing more than cry. I could not imagine our family accommodating a chronically inflexible child.
Well here we are 10 years later and My son is not what they said he would be. Yes - we have PWS issues. There is food seeking, nothing we cant handle. An occasional meltdown when we put something to him in the wrong way. And persistent requests for meals that are delayed - but nothing like the inflexible, tantruming, demanding child we were told we would have. Do I think some of it may have to do with our schedules - perhaps.
We still have a crazy schedule, and meals are never on time, and plans change at a heart beat, but this crazy family has learned to adjust - and my son right along with us.
So I am not telling you that you will or won't have issues. Your child has genetic predisposition not only to PWS but to the behavior of you and his father. Nurture also plays a great deal in this. So, the best you can do is just what you are thinking. Preventative measures now and hope that they work in the future. And if they don't - you can't blame yourself. Its just part of the package.
Retrieved from "http://www.pwsnotes.org/Flexibility"