It is Sensory Awareness Month!!! Today's post is a little different...but I'm killing two birds with one stone. My dear friend Brian Mengini has been working on an amazing book project about SPD for the last couple years. Rilely was actually one of his first "subjects" for the book and now his vision is coming together. He is an incredible photographer Brian Mengini Photography as well as the fath...
er of an amazing young man with SPD The DominicsDreams Foundation.
Brian asked that I write a little "blurb" for the book to accompany Riley's picture - so that is what I am posting today. If you would like to learn more about his project, visit his FB page: Portraits of a Disorder
Here you go:
Riley is an amazing little boy who has taught everyone around him that there are many ways to experience the world.
Riley’s journey with Sensory Processing Disorder began at birth, but his challenges were without a known cause until he was nearly two. The SPD impacts nearly every area of his life: he does not feel the sensations of hunger or tired, he does not process pain properly, he smells too much and tastes too little…and the list goes on.
Some of these challenges may not seem like that big of a deal until they are put in a human context. As an infant, by not feeling hunger, he did not care if he ate, resulting in a severe failure to thrive. As a result of not feeling tired, he slept very little, even as a newborn (approximately 6 hours a night with no naps during the day), so his body had very little time to shut down and conserve energy. Combined with very little food intake, he burned more “fuel” than he took in. The improper processing of pain was most obvious when he fell off a chair, cried for the first time in his life from pain (he was 4) for about twenty minutes and then went about his evening. The following day, Riley went to a birthday party at a climbing gym and played without complaint. Two days later, we decided we should probably have his arm checked out because he was guarding it, just a little. It turned out he snapped his arm clean through at the growth plate.
Through the years, we have worked with Riley to live around these challenges, but not ignore them. If he is injured, he must report the injury so the extent of it can be assessed by someone other than him. He must eat because he needs to grow big and strong. We have found a handful of foods that he will eat willingly and we just work with it. His diet is somewhat limited, but the lack of hunger means that forcing him to eat does not mean anything…threatening that he will go to bed without dinner does not mean anything…after all, he does not go to bed hungry because he does not feel hunger. As for sleep challenges, we have a bedtime routine and because it is just what he does, he falls asleep eventually and generally gets a pretty decent stretch, allowing his body to shut down and recoup from his busy days.
Our greatest challenge with Riley is to help him unravel the elements of his SPD so he can keep moving forward. For all of us, this navigation is an ongoing challenge. As he grows and evolves, his SPD does its best to keep pace with him and it continues to get in his way in new and create incarnations. Thankfully, he is a champion at pushing it out of his way and moving forward in spite of his challenges. It is a fun and exciting, albeit scary, journey to travel with our amazing little boy.
Brian asked that I write a little "blurb" for the book to accompany Riley's picture - so that is what I am posting today. If you would like to learn more about his project, visit his FB page: Portraits of a Disorder
Here you go:
Riley is an amazing little boy who has taught everyone around him that there are many ways to experience the world.
Riley’s journey with Sensory Processing Disorder began at birth, but his challenges were without a known cause until he was nearly two. The SPD impacts nearly every area of his life: he does not feel the sensations of hunger or tired, he does not process pain properly, he smells too much and tastes too little…and the list goes on.
Some of these challenges may not seem like that big of a deal until they are put in a human context. As an infant, by not feeling hunger, he did not care if he ate, resulting in a severe failure to thrive. As a result of not feeling tired, he slept very little, even as a newborn (approximately 6 hours a night with no naps during the day), so his body had very little time to shut down and conserve energy. Combined with very little food intake, he burned more “fuel” than he took in. The improper processing of pain was most obvious when he fell off a chair, cried for the first time in his life from pain (he was 4) for about twenty minutes and then went about his evening. The following day, Riley went to a birthday party at a climbing gym and played without complaint. Two days later, we decided we should probably have his arm checked out because he was guarding it, just a little. It turned out he snapped his arm clean through at the growth plate.
Through the years, we have worked with Riley to live around these challenges, but not ignore them. If he is injured, he must report the injury so the extent of it can be assessed by someone other than him. He must eat because he needs to grow big and strong. We have found a handful of foods that he will eat willingly and we just work with it. His diet is somewhat limited, but the lack of hunger means that forcing him to eat does not mean anything…threatening that he will go to bed without dinner does not mean anything…after all, he does not go to bed hungry because he does not feel hunger. As for sleep challenges, we have a bedtime routine and because it is just what he does, he falls asleep eventually and generally gets a pretty decent stretch, allowing his body to shut down and recoup from his busy days.
Our greatest challenge with Riley is to help him unravel the elements of his SPD so he can keep moving forward. For all of us, this navigation is an ongoing challenge. As he grows and evolves, his SPD does its best to keep pace with him and it continues to get in his way in new and create incarnations. Thankfully, he is a champion at pushing it out of his way and moving forward in spite of his challenges. It is a fun and exciting, albeit scary, journey to travel with our amazing little boy.
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