Savannah Grace was diagnosed with SPD at a very young age and has overcome many obstacles. She is now a 14-year-old pop singer with a new video. Savannah wanted to share her story with parents of children with SPD as well as the SPD kids dealing with life struggles. The best results come from early intervention but it is never too late to get help no matter what your age.
Here is Savannah’s story:
Despite getting a constant brush-off from pediatricians as a high-maintenance new mom, my mom knew something was wrong with me. I started crying – loudly from birth! So loud I was literally kicked out of the nursery at the hospital and made to stay with my mom (who had a horrible delivery and needed rest). I didn’t stop screaming until I was about 5 years old.
I remember being afraid of tall people, I was scared to look at people in the eyes, car rides made me nervous, and wearing clothes was horrible and I frequently stripped in public places! Two other big issues I struggled with were dealing with transitions and impulse control. My answer to everything was to scream and have a tantrum. If someone looked at me, I screamed. If I had to put on shoes, I screamed. If I had to stop playing to eat, I screamed. Even as a preschooler, I knew something was wrong with me. At the age of 4, I told my mom I felt like I had bubbles in my brain.
Prior to age 4, I had been misdiagnosed with Autism, speech delay and also labeled as a child with extreme behavior issues. At 2 years old I was seeing a child psychiatrist. Conducting her own investigation and research on Google and visits to every possible parent support group, my mom finally got the help I needed. I was diagnosed with Sensory Integration Dysfunction, now called Sensory Processing Disorder or SPD.
I really think early intervention is the answer to conquering and controlling SPD. For many years my family had no idea how to deal with me, but the good thing is they tried. My mom used flash cards, sensory activities and the Wilbarger Brushing Protocol method. She made sure that I went to all of my therapy sessions and worked with my teachers.
I guess, I just want to encourage you. Life with SPD is hard – and I’m sure raising a child with SPD is extremely challenging. Just don’t give up. I’m confident that if I hadn’t received help early on I wouldn’t be the person I am today.
Photos by Melanie Hawkins Photography
"This is the FFA calling from the school, and your daughter just won a piglet!"
So begins the journey – the journey my daughter, and our family, has taken into the world of pigs and calves, and therapy. Although, really the journey began in April of 2002 when my oldest daughter was born. Melissa was healthy and always moving, but it was obvious to me that there was something not quite working for her. She walked at eight months, but didn't speak until she was two years old. Clothes, noises, even certain visual stimulus would affect her negatively. After many failed attempts to understand Melissa's world, we found someone who did– she had Sensory Processing Disorder, especially in the auditory, touch, and vestibular areas.
Melissa started therapy right away. She was in 1st grade, and had wonderful people to help her – occupational therapists (OT), speech pathologist, and a full-time associate in the classroom. With this team, she began to improve. Our goal was to help her learn how to help herself function more comfortably with the right tools. It was a struggle, and not all the therapies we tried worked. Socially, because of her sensory issues, she didn't always fit in – it was hard for her to make eye contact because she would have to readjust her spatial organization when she moved her eyes. Pressure to the joints helped, as did movement: we discovered that when she walked and was asked questions, she knew the answers. Her amazing abilities started to shine – she was highly intelligent, very artistic, and had a strong love of animals. But, it was still hard for her to look at people, and she was often dismissed as uninterested when she was really listening very closely to everything but just couldn't look up. School got better, but wasn't easy, and she was exhausted after long days of trying to fit in to the world as well as trying to learn. As her mother, it was hard to watch.
That strong love of animals is where the story starts to change. We enrolled her in Clover Kids, and she started to light up at the talk of farm animals. One day she brought home a permission slip from school for an FFA raffle. This raffle was for a piglet, and it required a parent signature for the child to enter. Melissa went straight to her father, who signed off thinking that she wouldn't win. But, she did win! And that Friday saw us picking up a squealing, pink little bundle of piglet that was going to take us into a world we had no idea existed. From that day on, the minute Melissa got home from school, she was out with that piglet she named Ludacris. She would pet him, talk to him, and just sit with him for hours. Melissa understood that he wasn't a pet, and he couldn't stay with us forever, but she felt it was okay as long as he had a good life while he was here. I had never thought about it this way, and I started to see something change in Melissa. As she took care of her pig, she started to interact more with other people. As she talked to her pig, she started talking to more children at school. As she played with her pig, she started needing less physical therapy at home for her senses. Melissa was involved with horse therapy, and I knew that worked – but "pig therapy"?
The day came for Ludacris to go, and she missed him. So, we got her two more piglets to raise. Spot and Pumpkin also enjoyed Melissa's care until it was time for them to leave us as well. By this time, Melissa was old enough for 4H, and we knew that more pigs would be in her future. That year, a good friend offered to help us get started with show pigs, and on a sunny April day, four show piglets arrived at our house and I again noticed that just being around the piglets brought improvement to her senses. Weigh-in day arrived the next week, and Melissa actually went up to the man helping with weigh-in, looked him in the eye, and thanked him clearly! This from a child who struggled to make eye contact with her own family because it threw her off balance, and here she was doing it in public! But she was surrounded by her piglets... and again, I started thinking, "therapy pigs?"
A few weeks later two bottle calves arrived, James and Sam, and I watched Melissa spend all her time with her pigs and calves: sitting with them, brushing them, walking them, training them. She was always touching them in some way. Whether it was petting them, leaning on them, or sitting next to them with her back up against them, there was always that physical connection. Her therapy sessions at school include pressure to her joints to help with aligning senses, touching soft or bumpy items for sensory input to help stabilize her, and brushing of her skin to help with sensory adjustment. There are also therapy items she uses in the classroom (cushioned seats, rollers for her feet, etc.) I noticed that the way she was touching the animals was very similar to her therapy sessions. When she brushed the calves, she was applying deep pressure to her joints; when she was touching the pigs' bristly skin, she was getting sensory input similar to her brush therapy; she was getting sounds and smells as well, mimicking the music therapy and light therapy often used with sensory treatment. It was like she was using the animals to perform her therapy in a real setting. And once again, I saw her connecting more to people. At the fair, in a noisy, visually overwhelming setting, this child with sensory issues, not only functioned, but thrived – all because those animals were around her, letting her use them as therapy aids. She was wearing jeans (something her body would not normally tolerate), she was looking at the judge, making eye contact, walking around confidently in the show ring with her animals, and talking! And that's when it finally clicked: the animals were the tools she had created to help herself cope with the world. While we offered her normal forms of therapy, such as massage sticks, special seat cushions, therapy brushes, and the like, Melissa had gone out and discovered that animals – their warmth, furriness, licks, moos, oinks, movements and presence, was what she really needed to feel okay. While her social relationships aren't perfect, she has improved greatly; the school environment is not so overwhelming which makes it easier for her to participate and learn, and her own happiness has sky-rocketed. With the animals, Melissa doesn't even realize that she is performing therapy. When you ask her how she feels when she works with her animals, her replies are always about how much fun it is and how much she loves her babies. Even the animals respond to Melissa differently – remaining calm when she is agitated and even snuggling into her for pressure and warmth. And, again, I thought to myself, "Pigs and cows as therapy animals? Can that really be?"
Well it can; pigs and cows are amazing therapy animals. We have moved on from the first batch of 4H pigs and calves, and year two saw five show pigs and, thanks to our wonderful neighbors, three new bottle calves join the team. We came home from the fair this year with only the three bottle calves, but Melissa knows that more show pigs will arrive in April again, and she is using her money from the sale of her pigs to buy her first heifer. And I will support her all the way, because I know she is not just buying a 4H project, or a pet; she is buying her own therapy. She is building her own tools to help her function. She is improving her world so she can live her life more comfortably. So, never underestimate the power of a pig, the power of a calf, to change someone's life. By thinking differently about what can be therapy, you may just give a child, like my daughter gave herself, new tools that will be life changing for all involved.
Author's note: There are many who helped in our lives, but a few special thanks to: Mary Echterling (OT), Kelly Decious (OT), Cheryl Miller (Associate), Russ, Chelsey, and Mikalya Vandenberg, Landon and Denny Cason (Cason's Pride and Joy Simmentals), and Kyle and Chelsea Bachman (Bachman Farms)
The Occupational Therapists at Salem (Oregon) Hospital Rehabilitation Center worked with us for three years (Britt, then Jamie and finally Darrin). They trained me how to implement OT therapies as fun activities in our home. Gabriel received a healthy and varied diet of sensory exercises, which changed as he grew and aged, or as new challenges arose. Over time, he began to endure, and then even enjoy the feeling of sand -- he now plays in the sandbox daily. Instead of filling his pockets with rocks, we use a weighed compression vest to aid with self-regulation when things become over-stimulating in preschool. He has learned the difference between hot and cold (and that one could hurt him.)
After 2 1/2 years of Occupational Therapy, we stopped making forward progress. Therefore, we added horseback riding therapy (through the Adaptive Riding Institute in Turner, Oregon) to his sensory diet – and began to see immediate and significant changes. Within a few short months of beginning the therapy, my son started to feel pain for the first time in his life. He cried about having a hang-nail . . . which made me cry with joy that he could finally feel pain! (Not that a parent wants their child to feel pain – but pain is there for a purpose/reason!) Gabriel also started to feel hunger for the first time in his life. He thought he had a belly-ache, so he didn't want to eat. The less he ate, the more his tummy hurt – so we were able to determine that it was HUNGER, and not illness, causing the discomfort! Once he started to eat regularly, the pain went away!
With the combined efforts of the ongoing Occupational Therapy over a period of three years, and the Horseback Riding Therapy over the past six months, my son is finally feeling (in his words) "like a regular kid". We have our farewell OT visit this week, and as his parent, I feel like Gabriel is graduating! We have introduced a simple therapy room in our home (swing, trampoline, etc.) and use household items (like lugging heavy laundry across the house) in our daily therapy regime. We know that Gabriel's SPD will never be "cured"... but with the combination of the skills we've learned from our OT sessions, along with continued horseback riding therapy – we believe my son is ready for his next hurdle in the Fall... Kindergarten! He'll always have SPD – but we haven't allowed it to become a label that defines who he is... it just changes our approach to the things he does. Without the OT – we'd never had gotten this far. We're ready for school – bring it on!!
I knew Gavin was "different" just a few days after he was born. He was content. ALWAYS. Next to never cried and was happiest just existing. He didn't NEED to be held, didn't cry for food or diaper changes. Sounds didn't affect him. Nothing really startled him. He didn't feel pain, went through dozens of ear infections that we were unaware of until his eardrum would rupture and fluid was pouring out of his ears. He never really made eye contact. There seemed to be some sort of disconnect. He was sort of just there.
Let's discuss milestones. They weren't being met. None were on target.
He never crawled; sort of did an odd army crawl not to touch his hands to the floor. He walked very late, hated change of seasons, especially having to wear long sleeves and pants that touched the tops of his feet. He didn't know hot from cold.
He just seemed unusual, had little quirks that were unique. Everyone, including his pediatrician, said he was fine, I was overreacting, he's just quirky they said. It was when he was still non-verbal at well over a year that it started to really hit me that something just was not 'right'. I took matters into my own hands after he failed a hearing test at the pediatrician.
It was then, at age 20 months, that they thought that he may be hearing impaired. We went under the care of an otolaryngologist and a specialized speech center. We discovered that he could indeed hear, thank goodness. It was also then that we discovered his issues....Not the ones, though that I was expecting or anticipating............
Severe Language Disorder..............
Can I say it again?
How about Severe Receptive and Severe Expressive Language Disorder........
That's even worse.......
Now add Severe Apraxia to the bunch and those were Gavin's original diagnoses. I was still not convinced at all that delayed speech was "IT". Something else was going on. I feared it was Autism... though this was the first time I actually muttered the "A" word out loud, it was spinning through my days and my dreams.
This started us on the roller coaster of therapies, and the roller coaster that we now call life.
Gavin started therapy 3 days a week; speech, occupational and physical. It was during the therapy for his speech delays that SPD was discovered. One of his therapists pulled me aside after barely knowing us and told me about a book... a book that changed my life. She suggested I read, "The Out of Sync Child" by Carol Stock Kranowitz. She said no more. Just recommended I read it.
That night I went to my local Barnes and Noble on a whim to check for this book. I found myself sitting on the floor of Barnes and Noble gripping this book for hours discovering Gavin. THIS BOOK WAS ABOUT MY SON. This book was Gavin. I wept there on the floor as passersby probably thought I was a mental case, crying with my Starbucks on the floor in Barnes and Noble. Not pretty. But I finally knew what was going on. There were answers.
The next morning I immediately called his therapist trying to get words out between my sobbing and thanked her. She suggested we see a neurologist ASAP.
Unfortunately, ASAP in the state of New Jersey means about 2 years later... Thankfully we made it to one in 21 months. But in the meantime went BROKE paying out of pocket for therapies to help him. First, we didn't have an official diagnosis and second, even if we did, SPD is not a recognized disorder for our insurance to cover therapy.
In July of 2009 we had our turn with the neurologist and it wasn't a pretty visit. Gavin officially received his SPD diagnosis, Sensory Feeding Disorder, Dysarthria, and ADHD.
Gavin is now nine years old, mainstreamed and entering 4th grade in the fall. We have a strong support network of two special education teachers that shadow him through his day. It has been a very bumpy road to get here and he has good days and bad days. His diet is beyond atrocious, most smells make him dry heave, the sun is too bright on some days and the "sock lint" between his toes hurts him.
A trip to NYC is a traumatic experience of noises and smells that will creep up on him and cause a meltdown. With Gavin it seems too much sensory input today will cause a horrible day tomorrow. It seems to catch up to him after he sleeps.
Gavin is always moving. ALWAYS. Even in his sleep. He moves about his bed to about a dozen different positions per night. I hear all too often from his teacher that, "Gavin walked around the class a little too frequently today". Thankfully his 3rd grade teacher was very accommodating and allowed him to get up and move. She also allowed for modifications in the classroom to help him. She let him lie on the floor with a clipboard and play with a squish ball during lessons. She allowed him to sit on an exercise ball instead of his chair. I am still fighting with the school system to get him some extra help. It's been a battle from the start.
Gavin is very uncoordinated and very clumsy. His body awareness is basically non-existent. I fear for him ever being able to ride a bike. He so wants to but just can't get it right. Speaking of fear, he has ZERO FEAR. He will do it all! His gross and fine motor skills are lacking and he still puts things in his mouth that he shouldn't.
The most difficult part is that most of the world has no idea about SPD. NONE. They feel it's not a real issue and that he is just a bad child. It got so bad that I had cards made up that say, "I'm not naughty, I have SPD". It also gives a little picture map outlining the disorder. It has helped me through some awkward moments. I keep them with me at all times and have handed them out on line at Target, in restaurants and I often give them to anyone meeting Gavin for the first time. I have also made up small little biography books that outline Gavin. Each page gives a description about how that particular SENSE works for him. I have also created a local support group* that meets monthly to help others struggling with this disorder. It's been a great outlet for me.
Even as an eight-year-old Gavin was growing to learn how to adapt. He's a very loving little boy with strong green eyes and red hair. He knows when he has had enough and will ask to go to bed or have some quiet time to regroup. I am thankful that we started therapies early on which I truly believe allow him to function as well as he does today.
I am thankful for Gavin
There are over 4 million registered youth soccer players in the U.S., with close to 200,000 playing in a talent-rich league known as Cal South, stretching across a large swath of Southern California. Now at age 16, Roman has played in Cal South for the last 8 years and has matured into a national-caliber player.
One of Roman's big breaks came when he took a trip to Brazil in 2011 to play with some of that country's top youth players. On the heels of that experience, Roman took two trips to Europe in 2012, including one where he joined a Brazilian club and played 22 games in Spain, Portugal, Finland, Sweden and England.
What changed for him was the realization of how much soccer had given him – enriching his life and allowing him the opportunity to travel and experience other cultures.
That is why in 2012 he decided to use the sport he loves to help others. Roman founded a charity last year called Play For Others (www.PlayForOthers.com). Before his high school season, Roman called on friends and family and walked neighborhoods in San Diego gathering pledges to support his Play For Others program. By joining the Play For Others team, donors committed to fund a charity designated by Roman based on the number of goals he scored in his high school season.
Once he had all of his pledges, he created an Excel spreadsheet to track all of his team members and used e-mail to send updates and even videos from time to time on his season. "It was really all intended to be fun," said Roman Martin. "I wanted everyone involved to be able to follow our season at La Jolla Country Day School and really feel like they were part of our team."
By scoring 9 goals in the season, Roman was able to raise close to $9,000. The second part of the program was also interesting. Roman knew he wanted to contribute the money he raised to a charity focused on solving problems faced by America's youth, but his challenge was determining which charity to support.
THE SPD FOUNDATION
Roman did research on a variety of charitable causes. "I looked at issues like homelessness, poverty, illiteracy, physical disabilities, education and emerging medical issues," recalls Roman. After much research, the charity he chose hit close to home.
"Our family has been impacted by sensory-related issues," said Roman, "and I've learned that it is far more common among America's youth than most people realize." After looking at many different charities, Roman was impressed with the work at The SPD Foundation. "Dr. Miller has done so much to help put Sensory Processing Disorder (SPD) on the map and help thousands of children and families like ours that are impacted by SPD." The next step was to update his Play For Others team and coordinate having the monies directed to The SPD Foundation, which Roman did earlier this year.
"We couldn't be more pleased," said Dr. Lucy Jane Miller. "It is actually remarkable. We don't see philanthropy like this very often from someone Roman's age." Another one of Roman's Play For Others donors was John Mullen, President of Cal South.
"Over the years, we have had the good fortune of watching Roman grow in soccer, grow as a student-athlete and grow in his personal character off the field. He is an excellent soccer player and an even more special young man," said Mullen.
Now a member of the U.S. Development Academy where Roman plays for the Nomads Soccer Club in San Diego, California, Roman is scheduled to take his fourth overseas soccer trip this summer.
Recently selected to the 16-man travel squad of Pequeninos do Jockey, which is based in São Paulo, Brazil, Roman will be touring Europe in July and August and playing in some of the world's top international tournaments.
No matter where soccer takes Roman, there is one thing we at The SPD Foundation can count on – Roman knows whom he is playing for. When Roman Martin steps on the soccer field, he is playing for 1 out of every 20 children in the U.S. that suffers from sensory issues -- and we could not be more proud of him!
Many times we hear stories from parents how they knew that something was not quite right with their child. Well-meaning friends, family members and even their pediatrician would tell them to stop worrying, not to overreact; he’ll grow out of it. But then once in school the phone calls from teachers begin with problems their child is having sitting still, throwing tantrums, hitting other children who get too close, and on and on. The parents always know but too often it is years before they finally get someone to listen to them and they get the diagnosis: Sensory Processing Disorder (SPD).
So many parents who have been in this situation want to help spread awareness about SPD so other families don’t have to go through what they have gone through to finally get the support and help they need for their child. This was just the case with Melissa and her son Daniel and so many other families who have helped spread awareness over the years.
Here is Melissa’s story:
“On January 12, 2012 my son, Daniel, on his 5th birthday was diagnosed with Cerebral Palsy and shortly thereafter, Sensory Processing Disorder. This past year he has gone through a lot and as a single parent I found comfort in Lucy Miller’s book, Sensational Kids. As I turned the pages and read about Sensational Children, tears streamed down my face; not of sorrow but of joy to know ‘this is what is going on with my child.’ It was a relief to finally have so many questions answered and to learn how to help Daniel. I wish I had known about SPD sooner, but I can’t go back. All I can do is move forward and hopefully help raise awareness about this disorder that affects so many children.
For Daniel’s 6th birthday we had a Daniel’s Milestone Celebration party to celebrate everything he has accomplished this past year and to raise awareness about SPD. The invitation asked for donations in lieu of gifts. Over 60 people showed up and $400 was raised! This was my first time doing a fundraiser and I hope to be able to do it every year.
Thank you, SPD Foundation for everything you do to raise awareness and help people who are affected by SPD.”
Thank you, Melissa and Daniel for spreading awareness in your community and raising funds for our Foundation so our mission of conduction research, educating others and advocating for diagnostic recognition can continue.
My name is Bayleigh Cluett, I am 15 years old and I have Sensory Processing Disorder (SPD). I was diagnosed with this when it was still called Sensory Integration Disorder. I had a grade 3 brain bleed (a 4 being the worst) when I was a baby. They told my parents I might not be able to walk talk or even function on my own. The doctors performed a miracle and I turned out better than they expected! I was diagnosed with sensory integration when I was six. My mom kept asking my pediatrician if something was wrong with me and they just kept telling her I was a difficult child.
Once I was diagnosed, I started going to occupational therapy. This included banana suits, moon shoes, brushes, too tight clothing, trampolines and much more. I look back on occupational therapy as a HUGE help because I could not stand car seats, jeans, buttons, zippers, belts, pockets, earrings or even being late to a birthday party. I would completely shut down and start crying. My sensory issues were so bad that my parents would not take me anywhere because I was such a pill to be around. When when we had field trips at school I wasn’t allowed to go unless my mom drove me because no other parents wanted to take me (due to the restraint of the car seats).
My doctor told my parents I needed to be involved in a sport or something to help me stimulate my body. I was involved in gymnastics ever since I could walk which eventually led for my love of cheerleading. I began cheer when I was eight. We cheered at football games, had competitions in Vegas, Arizona, SDSU, Long beach, and went to Florida for nationals. I stayed with the Pop Warner Program until seventh grade where I also cheered at Tri City Christian and on to Vista Pop Warner for my eighth grade year and then onto Vista High School on their freshman cheer team. Now I am on the Varsity team at Rancho Buena Vista High. I love this sport so much that I would do anything to be able to be stay in it. This includes wearing the super tight shoes and socks I am now used to and the itchy scratching uniform and being able to cheer in front of a huge crowd.
My mom was such a huge help to me because she would come to my school every day to help me with the exercises I had to do at lunch because my teacher would not help me. My mom would also perform brushing techniques and joint compressions three times a day. She also helped me because she was a gymnastics director at the YMCA, Stars and Stripes Gymnastics, Stagecoach and Gyminey Kid’s Gymnastics and Calavera Gymnastics. She also coached my cheer team all six years I was in Pop Warner. She is my rock and someone I can turn to for anything. I could not have done this without her; she took me to all my football games, coached my practices, and came to all my competitions. I don’t know how she was able to take care of me. I was such a difficult child and that was because I was super stubborn on top of having SPD.
I remember one morning my mom went to work and my dad was still at work when my carpool came to pick me up. My grandpa was watching me and we were going to be late for school. I didn’t want to be late so I hid under the car and wouldn’t come out until my dad got home and peeled me out and sent me to school. I hated to be late. My third grade classroom was all the way at the other end of the school and I was so upset that I had a melt down before I got to class. I also remember one birthday when my grandpa took me somewhere before my party. We got back late for my own party and I started freaking out. I also hated it when everyone sang the birthday song to me. I would hide under the table. SENSORY OVERLOAD.
If you told me when I was six that I would be doing all of this, I probably wouldn't have believed you. I am glad I had all the help and support that I needed because without it, I would not have been able to accomplish all these goals. I am very grateful for all the support and all I have done; I wouldn't trade it for the world. I want to say thank you to God for everything He has done for me and my mom for all the support and help she gave me, and all my doctors I had because they truly helped me in a way I cannot explain, and all my coaches, teachers, friends and family for all they have done for me over the years.
Thank you for reading: Bayleigh Cluett, 15
Back when Sensory Processing Disorder was unknown to us, my parents had no idea what I had and the doctors at the time didn’t either, besides saying that I had ADD (which I do). It wasn’t until one day that my mom surfed the internet and found out what I really had.
What really helped was when I joined marching band in High School back in 2003. We were required to wear the uniform, a material that I didn’t like but since I loved it so much and wanted to participate, I went through the annoying “take it off, take it off, ew, ew, ew” going on in my head.
My parents were equally shocked that I would go through such an experience. From hot to cold weather, with two different materials that grated on my skin in annoyance, I went through it. I loved being in the marching band and I wasn’t going to let that get in the way.
There was one time that my high school’s (Allen Eagle Escadrille ) marching band was invited to the Rose Bowl Parade and I marched in it, all 7 miles, in the rain! It soaked us all to the bone and it bugged me so much that I felt numb afterward on the bus ride home.
I was just itching to get off the wet and icky material that felt like slime and made my brain do it’s annoying chant louder than before. When we got back to the hotel, I wanted to run when I headed to the bathroom to change out of the uniform and into the clothes we were all required to wear.
Despite that experience, I still do not like certain materials that feel extremely gross against my skin.
I’m 23, a college student in her second semester going for Web & Interactive Design Certificate at the local community college here in Austin, Texas. I wear comfortable clothing, not caring the slightest of what the judgmental people think of me when they see me. And while I didn’t have the community that is here today for those with SPD, I’ve accept this side of me.
I won’t let it get in the way of doing the things I love to do and I’m sure that when other people with SPD realize this, nothing will stop them either to do things that they love.
Thanks for reading,
Editor’s note: Woody Sims is an 18 year-old with SPD. He is about to graduate from high school and will be attending Trinity University in San Antonio, Texas. Woody is a remarkable young man who became a part of the SPD Foundation and STAR Center family many years ago when he came for occupational therapy. Over the years, Woody has volunteered his time to help in any way he could. His parents, who own a few local restaurants, have also been incredibly supportive of the Foundation by catering numerous events over the years at no charge. We wanted to share Woody’s success story, which just so happens to be his entrance essay for college. Thank you, Sims family, for your devoted support.
By Woody Sims
I was never what you could consider a "normal" boy. Sure I was in boy scouts for a year or so, I enjoyed cartoons, and I played imaginary future army games with my friends from time to time. However, most of the time I spent my days pretending a picnic table on the playground was a computer, my friends were vampires, and my basement was a haunted mansion. While that could be chalked up to good old-fashioned imagination, my deep fears of loud noises, cooked carrots, and handwriting, however, were something else entirely.
After much research and many consultations, it became clear I had a condition called Sensory Processing Disorder, SPD for short. Basically, those with SPD can't process stimuli correctly. Either they get overloaded with stimuli and can't handle it, or they end up with too little stimuli and actively crave more. I was over-stimulated, which meant I couldn't handle certain textures, and freaked out at loud noises. I also had problems managing tasks with multi-sensory inputs, like handwriting and catching a ball. These sensory problems meant that sports, driving, and concerts would all be things I couldn't ever do or see without a great deal of difficulty.
Editor's note: The following letter by sensational mom and SPD-PC host Amy Bornhoft was published Feb. 27, 2009, in the Toano-Norge Times of Virginia and published Feb. 25, 2009 in The Virginia Gazette of Williamsburg, VA. The letters were published after Amy sent this message to the Virginia State Senate to plead for funding of early intervention. Her daughter Madison's story and Amy's success in raising legislative and community awareness of SPD in Virginia are sensationally inspiring!
The need to fund early intervention programs
By Amy Bornhoft
My daughter is 2 years old and was diagnosed with Sensory Processing Disorder (SPD) almost a year ago. We began the journey of exploring what was wrong with her when she was three months old. We went to several pediatric doctors, neurologists, had X-rays, and MRIs, as well as brain scans. This cost us much money, time and emotional damage.
Every test, we waited for the results, hoping this might be the answer...that we might FINALLY be able to help her. No one could tell us what was wrong, just that something was. Our pediatrician finally asked that the Child Development Resource Center evaluate her physical and cognitive development.
The team came to our house and assessed her and before they left the occupational therapist felt certain that Madison had Sensory Processing Disorder. We did several more evaluations and began occupational therapy, and it was finally clear that Madison was indeed a severe case of Sensory Processing Disorder and was seriously delayed both cognitively and developmentally. Within six months of therapy, her cognitive skills were very close to where they needed to be. Within a year she has finally begun to meet major physical developmental milestones. This could not have been done without the CDR early intervention program and our OT. They worked with her every week and showed me what I needed to do daily to help her progress. They provided us with the necessary tools and resources needed to give her the best care possible. They also gave us incredible emotional support.
Our Occupational Therapist stated that she had never seen anyone like Madison. She spent many hours of her own time researching methods, techniques, resources and other ailments that could be contributing to Madison's delays. It has all finally paid off.....My daughter took her first steps at age two just three days ago. The gleam on her face and sense of pride was a sight that words can not describe.
I was a therapist and educator and had no idea what Sensory Processing Disorder was. I was helpless to help my child. I was emotionally and physically at my wits end and I had two other children that needed me as well. The early intervention program has saved our family from irreversible damage to all members. Thanks to this program Madison has a chance to develop to her full potential. We now know how to assist her and help her deal with what is going on in her brain and her body. We are prepared to support her and prepare her and enable her to grow and blossom. I never thought my daughter would be able to not have to suffer through every task she encountered. I know now, because of the assistance we have received through early intervention, she has an incredible chance to learn how to catch up from the delays her brain and body were presenting. I know several parents who struggle daily to help their kids because they did not get an early diagnosis of what was wrong or receive early intervention. They were passed along to doctor after doctor and each one said something different. Their family and their child are facing so much more difficulty because the intervention has been delayed. Time is precious and every moment is essential in helping these children "catch up" on the developmental milestones they have missed. Helping them to find the coping strategies needed to face a world that does not understand their pain.
The early intervention program has also been instrumental in assisting me to facilitate a support group for any one who is dealing with Sensory Processing Disorder. This has allowed us as parents to support, educate, and share resources with each other and the community so our children can be better served. They allow us meeting space as well as help us connect with one another. We as a group have also connected with other groups that have sensory issues, such as the Aspergar's and Autism groups. We are doing our part as parents, but we need early intervention services funded to the fullest capacity in order for them to do theirs.
We need these services, our children need these services. If we can save our banks, car dealers, put grass on the monument in Washington, and a museum in Vegas of gangsters (things proposed in the stimulus package,) then please, we can find the money to help our children, our future.
Amy Bornhoft Yorktown, VA
Anthony Cruz is a 12-year-old seventh grader in a small town on California's central coast. He also has autism and SPD. His mom Heather says his sensitivity to touch is sometimes so unbearable that he peels away the skin on his hands just trying to get rid of the sensations he's feeling.
But Anthony has other feelings that go even deeper, feelings about changing the world that have turned him into a one-boy dynamo. At only 12, Anthony is making such a difference that the San Francisco '49ers football team honored him for his dedication to improving the lives of others. The team named him one of five finalists for its Community Quarterback Award, the only child so honored.
With the honor came a $1,000 check donated to the charity of his choice. Anthony chose the SPD Foundation because "there aren't exactly a lot of organizations around that recognize and support SPD." The check was presented to SPD-PC host Maureen Barton at a luncheon in San Mateo. Anthony was recognized onfield at the '49ers-Eagles game in San Francisco.
Joanne Pasternack, director of community relations for the '49ers, says, "Anthony was selected as a finalist because of his exceptional commitment to improving the lives of others through significant community service contributions. He also serves as an inspiration, demonstrating that young people - and young people with autism - can make a difference in the world and their community, one action at a time."
"One action at a time" has produced a long list of groups and individuals who have benefited from Anthony's desire to "make the world a better place." A partial list so far (after all, he's only 12) includes:
Says his mom Heather Cruz, "The best part of all this is Anthony has autism. Autistic kids think, see, hear, and act different from everyone else. I think this is why Anthony is so committed to community service, because he takes everything to heart."
Anthony himself explains, "My family only has a little bit of money but we are ok. I feel bad for everyone if they have a disease or are struggling or lost a family member or have no money. I hope maybe I can help find a cure for autism or anything else that effects us. Everyone should have a good life."
We couldn't agree more. That's why the SPD Foundation exists. We thank Anthony for the $1,000 donation that helps us help others with SPD have a better life. When he appears on the field for Sunday's game, he'll be proudly wearing an SPD Foundation T-shirt that reads "Sensational Kid." In Anthony's case, that doesn't even begin to sum things up.
Thirty-one years ago, after many struggles with my 4-year-old second son, I was casting around for answers and called the local Easter Seals organization. I was familiar with their work with kids with cerebral palsy and thought they might know where I could have my son evaluated. With kindergarten approaching, I thought he might be dyslexic.
They conducted the battery of tests at their office and diagnosed him as having Sensory Processing Disorder, then known as sensory integration dysfunction. We found an OT, and she laid out a demanding course of therapy. She was always optimistic; my son would catch up on the physical skill delays eventually, she said. Now he says he can remember when things became easier, at around 10 or 11.
I had been frustrated at his lack of progress, especially in comparison with his brother. As a young mother, I had planned to return to school when my second child was three. The demands of treatment and general disruptions caused by a child with SPD made that impossible until he was settled in elementary school, around 8. Even then, school was a frustration to both of us; he was clearly a bright child, but his grades were abysmal. His self-esteem suffered from the time he realized that most kids were much more fluent than he in speech and movement. The self-esteem issues resulted in behavioral problems.
There were bright spots. Perhaps because language was so difficult, he slowly began to excel at math and science, ending up spending eight summers at a science camp and progressing from camper to counselor to National Science Foundation summer intern in high school. Still, traditional academic success eluded him until he was 20.
At that point, he realized that his future was up to him. He re-enrolled in community college, taking remedial courses in reading and writing. He continued to excel in science and math, getting top grades in science and math and eventually transferring to a top state university.
Eight years after graduating from high school, he completed college with a degree in chemistry. After a couple years of laboratory work, he leveraged himself into a job where he simultaneously worked, studied for his doctorate, and - for the first year - also worked as a teaching assistant. Four years later, he received his Ph.D. and soon after was accepted into a post-doctoral fellowship at a top private university.
Now, there seems to be nothing stopping him. From that slow start, he has accelerated his rate of progress at each stage. Perhaps his struggles gave him more resolve. When he knows what he wants, he goes for it with a fervor.
Bringing him up and helping him achieve success was much more demanding than a "normal" child. At times it was hard to be patient and to put aside my own plans in order to invest in him. But as a parent, I always desired the best for him, and, even when the schools threw up their hands, I saw his potential, his many talents, his good-nature, and his care for others. Maybe it took longer for him to grow up, but he is now a sensitive, caring and contributing adult on whom I feel I can rely.
No two stories are the same. It was reassuring to get a diagnosis and a therapy protocol. However, despite the relatively quick restoration of his vestibular capabilities, at 4, he had a lot to make up. I only wish he could have received therapy earlier so that the aftereffects could have been less. It was a long haul to help him become a self-sustaining adult. But it did happen for us, and it can happen for you. I think now that SPD is better recognized, more children can begin therapy earlier, and society - schools and support groups - can lend more assistance to parents.
As with any disability, there is a fine line between protecting and coddling such a child and expecting him or her to be like other children. I think it is most helpful to think of a sensational kid as a "normal" child but one who will take a little extra assistance and time to grow up. Early diagnosis and treatment can reduce the time it takes to get the child on a typical growth track.
And don't forget to take care of yourself. I could have had a better support system but, even without one, I returned to school when my son was 8 and have had a long and productive career in my field. And now I have two married, well-adjusted children, and my sensational son with SPD is the proud father of my granddaughter
My name is Nicole, and I was born on May 12, 1982, in Boston. I am 26 years old, and I have Sensory Processing Disorder (SPD). I was diagnosed at age seven, when it was called sensory integration dysfunction, and it was something that changed my life.
After my diagnosis, I had extensive physical and occupational therapy twice a week and also in school. These helped me with everything from balancing to writing. The help was greatly needed and worked in my favor. My parents fought with the state so that they would pay for my services because insurance would not cover it.
Living with these disorders as a child was tough for me because the other children thought I was different or, in their word, "weird." My mother signed me up for swimming lessons because we thought it would help, but that's when I encountered my most traumatizing moment.
It was the first day of swimming lessons, and the teacher had us put on "bubbles" to keep us afloat. We all got into the pool and stayed at the shallow side. The teacher then instructed us to swim to the other end of the shallow side. All the children went to the other side but me. Even though the bubble would have kept me afloat, I couldn't move. I was scared. I looked at my mother, who was in shock, and I felt like I let my family down. I felt embarrassed in front of the other children. That will always be one moment that sticks in my mind.
It was tough for me to go through all of this but with the help of family, friends, and therapy, I was able to pull through and come out on top. I accomplished a lot of things that I never thought I would. I ended my therapy in eighth grade and walked away with more confidence in myself that I ever had. Each year, I accomplish more and more.
Now I am 26 years old and have done much more than I ever thought I would. I never let any of the people that told me I couldn't get in my way. I went on to live away at college and, within five years, I graduated with honors. Honors were a big accomplishment for me, and it made me happy. I also went on a cruise with a great friend of mine and accomplished more goals there. I have made music a big part of my life and would like to work in that field, but I also would like to advocate for others with SPD.
If you asked me when I was seven if I would be doing all of this, I probably wouldn't have believed you. I am glad I had all the help and support that I needed because, without it, I would not have been able to accomplish all these goals. I am very grateful for all the support and all I have done, I wouldn't trade it for the world.
To the other adults out there and parents, you can over come and you will. Don't give up no matter what life throws your way. Keep living life to it's fullest, and you will be greatly rewarded in the end.
Nicole, 26, Boston
(The following was submitted as a letter to the editor of TIME magazine after its December 10, 2008 report about SPD.)
In regards to the 12/10/07 article (in TIME magazine) by Claudia Wallis entitled, "Is this Disorder for Real?" you bet it is. With an advanced degree and 20 years in the field of medical psychology, you would think that I would be perfectly capable and equipped to understand the behavior of my own 6 year old child.
And yet from Day One, we were completely baffled by her behavior and reactions to seemingly normal environmental stimulus. What appeared quirky and sometimes cute in her early years (her obsession with feather boas, her tendency to hurl herself into the ocean, the sand, the mud, her daredevil antics, the off-the-charts emotional meltdowns) became much more problematic when she started preschool and disastrous in kindergarten. She couldn't sit still or pay attention, she made odd noises when anxious, she had difficulty socializing with peers, she had major emotional outbursts. She was terrified of the school bell. She did not fit the diagnostic criteria for ADHD or Autism, the disorders that would typically produce these types of behaviors.
The response by her school was largely punitive and included many trips to the principal's office, suspension, suggestions of sending her home early every day and even recommendations of parenting education for myself and my husband. It wasn't until we connected with an occupational therapist at Therapy West in Culver City, California, that we discovered she had all of the classic symptoms of SPD. It was as if someone has finally handed us the operating manual for our child. This diagnosis connected the dots between those "quirky" behaviors and reactions that we had been observing since her birth.
She has been receiving occupational therapy for three months. Her school experience has improved on all levels as a result of the therapy, and a new understanding on the part of the educators that she is not a "behavior problem" but a child who needs movement and accommodations in order to function within a structured setting.
Parents with children who have diagnoses of ADHD and Autism had to fight long and hard for recognition, support and reimbursement for the services that their kids need, just as we are doing now for SPD. My child is just as deserving as those kids of services through the school system and reimbursement through insurance for occupation therapy. We are currently paying out of pocket for OT services. At least 3 other kids in her classroom with many of the same behaviors who have diagnoses of ADHD and Autism are receiving OT paid through the school district. My daughter is considered "high functioning." With short-term OT and long-term education on the part of those surrounding and supporting her, the prognosis is good.
Is this disorder for real? Come meet my daughter and live at my house for a day or two and then you tell me.
My daughter, Jaimie, was diagnosed with SPD when she was only two-and-a-half. We'd already lived with SPD since she'd been born. Now we had a name for it.
Oddly, it was such a relief to know what boiled inside of Jaimie because we were then blessed with tools to relate to her–on her comfort level–instead of attempting to force upon her what was considered "normal."
One of the biggest steps for Jaimie was starting preschool in September 2007. She was terrified: of the new environment, of new people, and all without me–her comfort blanket. But she drew strength from a special source: her younger sister, Jordhan.
Jordhan and Jaimie have always been extremely close, but there have been times where Jaimie has been jealous of her younger sister's ability to do things she isn't able to bring herself to do (like meet new friends or enjoy hugs). So we had the idea to enroll Jordhan with Jaimie in preschool as a familiar face since Mama couldn't stay with her. It worked wonders.
Not only did Jordhan's feisty nature and love of meeting new kids ease Jaimie's anxiety, it also helped Jaimie to feel brave enough to participate in the preschool activities and even respond to other kids!
Jaimie will start kindergarten in the fall. Jordhan won't be able to go with Jaimie because she's too young. If you ask Jaimie whether she'll be okay, she says, "I think so. I just have to think about Jordy and I feel brave. Jordy is my sister, and she's my bestest friend."
I'm so proud of how far Jaimie has come–it gives me hope.