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Half Way There…!

Posted April 2, 2013 By Faces

Well gang, we are about half way to our initial goal of 100 faces.  We have a few more shoots lined up, some more traveling to do, etc.  To say we are excited about hitting this goal is an understatement!  YOU can help us attain this goal and show your support by purchasing one of our SPD awareness bands.

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The bands are $5 each plus s/h.  We need to sell roughly about 160 of these to get through the next wave of shoots for Faces of SPD.  The three states outside of the east coast area we intend to hit are Colorado, Ohio and Oregon.  If you have a group, please reach out to them and talk up these bands.  If you have a group and are in the areas just mentioned, PLEASE talk to your group.  This will directly impact our ability to come to you!

Please consider making a purchase and showing your support.  People need to know more about this disorder that affects 1 in 20 kids!

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Meet Zane

Posted February 8, 2013 By Faces

When Zane was born he was a happy healthy boy. We were young, but very educated parents. We researched everything we could possibly think of and interviewed pediatricians until we felt we found the one for us. So when Zane was 18 months old and I thought something might be going on with him, I trusted them when they told me that he was OK. Zane started walking at 18 months, which is right on the developmental delay line, and was always right on the line for having delays in his other milestones, but he always made the mark just in time. Then at 2 years old he started to struggle much more with sensory issues and getting physically violent over things like; having to wear jeans, loud sounds, and bright lights. Everyone told us “he’s fine” “he’ll grow out of it” or “he looks normal to me.” He wouldn’t always act out in front of other people which made it hard to get a second set of eyes at first. Zane would hold in his meltdowns in public and explode when he got home. As his mom I felt like I was so alone. Most professionals, friends, and family didn’t understand or validate my concerns but I knew with all my heart they were real! I continued to research and finally found an SPD web site. The more I read, the more I understood that this is what he is suffering from.

So we found an occupational therapist that specialized in sensory issues and had our son evaluated. We finally had an answer, I for the first time, felt validated. She agreed that he in fact did have sensory processing disorder with a dysfunction in all areas. Now this might sound weird, but I was grateful that he had a diagnosis and that he could get better! Then I quickly understood that our fight was just beginning. She informed me that SPD was not yet a medical diagnosis and treatment wasn’t covered under any insurance. Most people in her field and the special needs fields know that it’s a real disorder and these kids deserve all the therapies that we can throw at it as young as possible. We have been able to get him services and therapies through another angle right now and it has helped him so much. He’s such a loving and intelligent boy by nature. If SPD was a medically recognized disorder the future of these kids would be so much brighter. If SPD was recognized it wouldn’t be such a battle to get them what they so desperately need.

SPD IS REAL AND IT’S TIME THE WORLD KNEW IT!!!

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Tell the Teacher

Posted January 31, 2013 By Faces

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I am sure at least most of us has had some “challenges” with our spd kiddos’ teachers at one point or another.  For me, at the beginning of every school year, I reach out to the teachers and chat with them.  I direct them to websites and discuss concerns.  We also bring Dominic in to see the classroom and meet the teacher ahead of time.  We have been fortunate that most of his teachers have been willing to learn and try things to make the classroom experience better for him.  We did have some issues with Kindergarten and first grade.

While many of our kiddos may experience the same challenges in the classroom, there are many that don’t.  What are your kiddo’s challenges?  Do they have attention or distraction issues?  Are they “space invaders?” How is your kiddo with social skills and cues?  What systems or methods do you work with his teacher to implement to help make the day better or more productive for them?

What challenges have you faced with educators or the education system?  What changes would you like to see?   What do your teachers NOT know that they should know to better educate your child or make their learning and classroom experience more productive?  Are there specific things that might help if they knew?

Share your thoughts and experiences with us.  Please, make sure your comments are resolution oriented.  Our goal with this post is to create a dialogue and look at best practices.  We do not want this to be about ripping the school system, etc.  I know it can be frustrating but this is not a vent or rant session.  Let’s work together to bring about change, so keep that in mind when responding.

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Volunteers Needed!!!

Posted January 24, 2013 By Faces

Are you looking for an opportunity to make a difference? Are you a  student in need of community service hours? Are you an SPD parent, family member or service provider?  We are looking to grow this project and need help in marketing, fundraising, online research, organizing exhibits, and more. We need your unique talents to help us continue to grow! We’re looking for volunteers to help us in the below areas:

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1) Photographers – We are seeking professional photographers who can go out into the communities and help us create portraits.  To maintain the image quality and integrity of the project, you must be a professional photographer!

2) Community Coordinator- Coordinators will seek out various organizations and service providers to strengthen and grow our community partnerships.  The coordinator will also seek out exhibit opportunities as well as help spread the word and get more participants.

3) Fundraising - Help us develop fundraising opportunities, solicit sponsorship and create & implement events and exhibits.

 

If you are interested, please email us at brian @ facesofspd dot com!

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Meet Kayla

Posted January 3, 2013 By Faces

 

Laid back was the words often associated with Kayla as a little kid. She was very laid back, went with the flow of everything. As a baby, she was tagging along in her carrier as her father went on calls as a tow truck driver. The sound and vibrations of the truck would sooth her to sleep almost instantly. As she got older, she was still a very laid back kid, but started to avoid crowds and loud noises. She also walked all the time on her tip toes. Her sisters always said she would make a great ballerina. She also was a very picky eater growing up and still is.  She has always been a bright young lady. Now in High School, she is in honors courses. She still avoids crowds and parties, but she has learned how to cope with her SPD issues. She enjoys plugging into her Ipod and relaxing to her music.

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Faces of SPD ~ Meet Heather

Posted October 31, 2012 By Faces

My journey with SPD was discovered much later than most people. It wasn’t until a few months before my 26th birthday was I was informed that I had SPD. Growing up, I was your normal child for the most part. I did like to rock back and forth as a child. As I got older into my teen years, I had issues with depression and PTSD. I have always been pretty social, but there was a few things that I felt was always off with myself. It never dawned on me when my now 4 year old was diagnosed that I had SPD. I was diagnosed with ADHD as an adult, so I assumed my issues was brought on from that. It wasn’t until I was sitting with my 2 year old for a home visit and her OT and I was talking that it was brought to my attention. Being a mother of 3 SPD children, it does give me some great insight to what they struggle with. I have an amazing support net of family and friends. I have the most supportive husband I could ever ask for. He is the one always picking me up when I feel like SPD has knocked me down. I have meet so many people in the SPD community. Great friends and finally understand me and what I go through. I must say for an adult and mother with SPD, it is tough, but it is well worth it.

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Faces of SPD ~ Meet Rachel

Posted October 26, 2012 By Faces
A girl with Sensory Processing Disorder grows up in the big city. Yep, it happens. My name is Rachel, and I am 29. I was diagnosed with SPD in 2010, at the age of 27. Growing up, no one knew about issues like SPD. I was just thought of as a very sensitive child who didn’t particularly like loud, bright events and unexpected changes in environment – they made me feel uncomfortable, unhappy, and upset. I also cried easily, hugged hard, and had some unique quirks (like I always carried around small textured objects – my versions of fidgets). At the age of 14, I was diagnosed with an anxiety disorder called Panic Disorder, and for a decade and a half, I was treated by psychologists for panic attacks. Years later, after my SPD diagnosis, I would learn that these “attacks” were really just sensory shutdowns, which left me feeling drained and detached. The anxiety I learned to feel was a co-morbid – or related, secondary – diagnosis to the SPD. We learn to fear and avoid the things to which we cannot internally adjust. This is not uncommon for adults with SPD.
I am now a graduate student at the Ferkauf Graduate School of Psychology at Yeshiva University; Mental Health Counseling Master’s, class of 2013. Since my diagnosis (over-responsive to visual, auditory, vestibular, and tactile stimuli; under-responsive to proprioceptive stimuli; tactile-seeking), I have learned how to compensate for my difficulties. In class, to deal with bright fluorescent lights, I rock blue-tinted aviator sunglasses. I never leave the house without my Wilbarger Brush and earplugs. I sleep under a weighted blanket and sleep mask, and I have a whole collection of soft, textured fidgets.
I think it’s extremely important to advocate for adults with SPD, especially since the spotlight is currently on children. We are diagnosed later in life, and so have learned, out of necessity, how to be crafty and compensate for our lifetime of difficulties. Some of us have even learned to thrive. However, nothing soothes quite like a properly-fitting diagnosis. Knowing I have SPD has allowed me to learn new methods of coping, and to educate others. More importantly, I am no longer ashamed of my seemingly-strange behavior and needs. I am just one of the many faces of SPD.

 

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Faces of SPD ~ Meet Joshua

Posted October 24, 2012 By Faces

Joshua is 5 years old. He is a sweet, often silly, smart little boy. He has an entire collection of imaginary bugs that each have their own special hand shape. He loves playing with his Daddy, especially when they play video games together, Lego Batman is their current favorite. He is very interested in dinosaurs, planets and flowers. He adores his little sister, Samantha and likes making her laugh and teaching her new things.

 

When Joshua was born he was immediately taken to the NICU to be monitored because of the possibility of Marfan Syndome that he could inherit from me. He ended up diagnosed with Marfan at age 3, but as a newborn he was fine. We started noticing small differences in Joshua early on, but had no idea they could be connected to SPD. He sometimes cried for what seemed like no reason that I could figure out. He was reluctant to give up both bottles and baby food. At age 2, we fought nightly battles to get him to sleep. It seemed as though his little mind and body simply could not fall asleep. I was searching for answers and at a loss to explain what was happening. At one point my aunt (a special education teacher of over 20 years and parent of a child with autism and Down Syndrome) asked me if we had considered that Joshua might have autism. I had taught special education as well, and as she pointed out some of his behaviors it seemed that the pieces might fit. However, an evaluation through the local Infants and Toddlers program stated that he was not on the Autism Spectrum. I continued to search and read looking not only for an answer, but just for ways to help Joshua.

 

Joshua’s SPD diagnosis finally came at age 4. We were fortunate to have a friend whose daughter also has SPD and asked if we had considered the possibility. At Joshua’s 4 year old well check up, as I talked about some of his challenges with the pediatrician, she also suggested he might have SPD and referred us to an Occupational therapist. Joshua’s difficulties are in the areas of tactile, vestibular, auditory and self regulation. Joshua tends to be hypersensitive to stimulus. Since beginning OT we have learned many ways to help Joshua cope. He is also working on his fine motor skills which are impacted by both his Marfan diagnosis and his tactile challenges. Joshua is learning to better control his emotions, although it is still difficult for him.

 

Joshua is homeschooling for kindergarten, a decision made in light of both diagnoses and my experiences teaching in the public school system. I did not want to force him to cope in an environment that would not allow him to grow, learn and flourish. And selfishly, I did not want to spend enormous amounts of time fighting the school for the accommodations he would need in order to be successful. The enthusiasm that he brings to his school work and how quickly he learns leaves me confident that homeschooling was the right choice for Joshua.

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Meet Zach

Posted October 22, 2012 By Faces

 

It’s true what they say…that hindsight is 20/20. It is easy to look back now after 10 years and notice all the little signs and clues that now seem so blatantly obvious.

 

Back when Zach was born, I was a fairly new mom-Zach is my 2nd, and my oldest was only 18 months old.  Zach was a very easy baby-especially when compared with Liz-the oldest.  He was content, always happy to be around family.  He was soothed by the white noise of the dryer-nothing too unusual, but when added up with other things, I guess that would be one of my first signs.

 

My husband Brian coached high school wrestling when our kids were small and I took Liz to all the meets when she was little.  Zach was born in the height of wrestling season; so needless to say, his first match was when he was around a year old.  I still remember the first time we walked in to the gym-the JV match was going on, and it was pretty noisy.  He screamed. And I mean screamed.  Here again, another sign.  As a result, we didn’t go to very many matches because it was just so miserable for all of us.

 

Fast forward a couple of years-Zach was now 3, and I was ready to go back to work.  I am a school teacher-I teach special education.  Anyway, his first day of daycare arrived, and I brought him to his classroom.  He froze.  Literally froze behind me.  I chalked it up to his shyness, but every day was the same.  He was always very hesitant and timid, and I could never quite figure out why.  As kindergarten approached, his teacher expressed concerns about his handwriting.  He was a leftie, and it was not coming very easily for him.  Here again, another sign, but I attributed it to his reluctance to do puzzles and play with legos.

 

When he started kindergarten, we enrolled him in a private school so he could be in all day kindergarten, since I worked all day.  After about a week and a half, the school called and told us that we needed to have a meeting.  My husband and I went into the meeting and were met by the teacher and the principal of the school.  They proceeded to tell us, in front of Zach, that he could not continue to go to school there because they felt “he had autism and just did not fit in”.   We were in complete and total shock.  To this day, I dread any sort of meeting at school.

 

We pulled Zach immediately and enrolled him in our public school, where I began to request an OT to meet with him to deal with his handwriting issues.  The school stonewalled a bit, but finally, by the end of the year, Zach was placed in special education for speech issues.  Finally, finally, I thought we would get him some help.  First grade began, and Zach was in the worst possible setting (once again, a benefit of hindsight).  He was in an old classroom where you could hear the pipes in the walls.  Every few minutes, you would hear a loud knocking sound.  I think most students got used to it, but of course, Zach never did.  About midway through the year, I took Zach to a private OT.  He diagnosed Zach with SPD (auditory and visual over-responsivity, proprioceptive under-responsivity), and it was like a light had turned on.  Finally, I had answers.  Finally, things made sense.

 

Things at school continued to grow worse, however.  I shed many tears and spent many sleepless nights worrying about him and what we were going to do.  After 1st grade, I got a new job at a new school and we took Zach to the STAR center in Denver-an experience that I will be forever grateful for.  We enrolled him in another school-one that was closer to my school.

 

Finally, things began to get better.  Zach was now in a school where he could blossom, and blossom he did.  At our first parent meeting, the teacher told us how much she loved Zach, and I cannot tell you what a relief it was to finally have another adult appreciate Zach for what he can offer.

 

We still have our challenges, but we have grown closer as a family, and we have learned a lot in the process.  Zach is an extremely insightful kid, and it is sometimes heartbreaking to hear him give voice to his challenges.

 

Our favorite “Zach-isms”

“Sometimes, I feel like a computer that has too many windows open”

“I don’t have sensory problems, I have sensory gifts”

“Sometimes, I wish I was an ordinary kid that didn’t have to worry about OT and how to stay focused in class”

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Meet Riley

Posted October 17, 2012 By Faces

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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