Spatial Awareness

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Stony has a poor balance and poor spatial awareness. For this reason he often he appears clumsy and often bump into others and he does not like to go to the playground in the school.

In the school there are some teachers who tell him: go to play! But he can not!

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Prader-Willi Syndrome Phase 2b

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Prader-Willi Syndrome is a very complex condition what implies serious behaviour issues, endocrine malfunction, autism and it also implies obesity and an insatiable appetite what usually starts a bit later and has different phases.

With Stony we did not yet have big issues regarding food but couple of month ago things are changing and Stony seems to be entering to the nutritional phase 2b what usually happens at age between 5 and 8 with PWS children.

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Stony and Suzi are drawing

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Stony can not draw like others can at his age. Stony is struggling with lots of fine and gross motor skills.

Since he can not control his hand fine motor skills he can not draw structured things, he can not draw a car a flower, people or a house..what and how he used to draw is mainly a results from of the act as he lets the pencil move in his hand…so his drawing are very different, often a mystery very interesting lines and shapes.

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Stony can do it

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Stony can not dress up alone… yet. One afternoon when he was already in his every night foamy bath he called me with excitement! Mummy mummy come! I can dress up alone you have to watch! ūüôā

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Beyond Prader-Willi Syndrome

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Dear Visitor! 
We are an originally Hungarian Family with two children living in Texas. Stony our son is 8 and Suzi our daughter is 6 years old.
We are ordinary people with an extraordinary life as our destiny has granted us a huge challenge for this life. 
Our son Stony was born with a rare genetic disorder called Prader-Willi Syndrome. 
Prader-Willi Syndrome is a complex genetic disorder what affects many part of the body and results in a number of physical, mental and behavioral problems. 
We are the delegates for the  International Prader Willi Syndrome Organization (IPWSO).
Our world was completely changed when Stony was born. We live our life full of unusual, interesting, unexpected, awkward, hard or delightful situations what we have to solve on an every day basis using sometimes supernatural efforts and love. 
These situations make us laugh and make us cry but definitely make us live our life completely full.
Stony our son has Prader-Willi Syndrome (PWS), prominent Sensory Processing Disorder (SPD) , Obsessive Compulsive Disorder (OCD), Severe to Moderate Learning Difficulties (SLD), very Challenging Behavior (CBF), mild Autism and mild mobility difficulties. He struggling with a prominent scoliosis and is fighting with his monster what is related to his food issues.
Stony is on a very strict special diet what is gluten free, low carb and sugar free.
This diet is a game-changer and it helps him enormously. But we ourselves have also realized the huge beneficial and restorative effects of this diet. 
We cook and bake every day as this factor is very important in Stony’s life so you can also find a good selection of our best and well polished recipes on the site.¬†
We have started our family blog to share others some moments and thoughts of our life, with those who might like to laugh, cry, learn or wonder along with us! ūüôā
Our intention also is to help other families in a similar situation to cope and manage but mostly to enjoy and love the every-day challenges and try to get out the best of this extraordinary life.