My Story

 

Thank you for Listening

My daughter Petra was just over 2 when we started to notice that she was a little different. Though she seemed to be a perfect baby, she didn't need a lot of cuddling and we could leave her be and she would be fine with the toys we left around her. She didn't seek out interactions, though warm and friendly. She was the biter at her daycare though she seemed to not be doing it maliciously but just to get closer to the kids.

By around 3 and a half we noticed that her language was odd. Though she seemed to be learning individual words and was using gestures, her language was very tangential. Things just were not making sense and she would jump from one topic to another so quickly no one could really follow her. Petra was also having intense meltdowns at the table at daycare when all the kids were supposed to be eating. She was getting close to starting Kindergarten and we were starting to worry about how she would adjust. At the same time, at home we noticed if anyone came into our house (even friends who she knew) she had difficulties adjusting and there would be numerous meltdowns. We began to hesitate anytime we thought to have people over.

In the meantime, we had Petra's language assessed. She scored concerningly low on her language development so we enrolled her with a speech language pathologist. At the same time she was moved to more of a school situation for daycare. Once Petra was moved to this new, busier environment her behaviors became more profound. Though we knew Petra was a rocker and thumb sucker and had troubles with new environments, we didn't expect her to have such a problem adjusting.

Though initially Petra was friendly to most people, something changed and she started to have intense meltdowns anywhere we went where we were interacting with new people. The only confusing part of this was she was very social with her brother, parents and extended family.

Kindergarten began and it was bad. The playground was a very scary experience for Petra. She cried, rocked, thumb sucked and at times lay face down in the dirt. Class was confusing for her. She couldn't follow the language and she was developmentally below the other children. My husband and I are both teachers. All her behaviors looked like Autism Spectrum Disorder to all of us at the school. We went forward with assessments.

We were not happy with the first assessment. Our psychologist felt Petra's issues were due to a cognitive disability although I think he didn't really understand the issues. She was being tested for Autism, and though she filled much of the criteria she was way too social with the tester to get the diagnosis.

After another assessment she was diagnosed with non verbal learning disability and Sensory Processing Disorder as well as Language Processing Disability.

We've since read all of Dr. Lucy Jane Miller's books as well as others and understand more about sensory processing issues as well as auditory processing, as this seems to be huge for Petra. Many times Petra would try to tell us things and we'd be so concerned because her words seemed confused. Now, she's so much more aware of this word finding issue and spends time helping me to understand what she is trying to say. She'll now say, "I can't say it right now mom." or "No, that's not the word, let me think."

Thankfully so, with some fight from us she's got support at school, for now. We put a swing in Petra's room and bought an Auditory Listening Headset and music. She spent the first 2 months of her Kindergarten year swinging and listening for half an hour in the morning and half an hour in the evening. We noticed a huge difference in her ability to cope if she didn't go in the swing before school. After 2 months of this, Petra didn't seem to want to go in the swing or listen to the music headset anymore, but at the same time didn't seem to need it. Kindergarten was going better, she was managing the classroom well although it took until the end of the year before the rocking nearly stopped and half way through the year she began to run out onto the play ground like all the other Kindergartener's. Though she struggles with her academics we feel that she is getting closer to where she should be with her language.

Last fall my husband and I attended the Sensory Processing Disorder Foundation’s 3S International Symposium. We attended all of the seminars and were thrilled to attend the parents round table lunch where we were able to talk to parents who were going through what we had and to hear parents who had seen so much positive progress because of the sensory integration therapy that their child had received.

Thank you for listening,

Mom: Karin


 

Let it Glow

By Abigayle Fisch

AbigayleLet it glow. I believe that to have your day brightened, you must brighten someone else’s first. When you give of yourself to others, you actually receive. When you give, you get. It’s simple, the light you have inside of you; your soul and love, can only become brighter, if you help to brighten someone else’s.

When I was thirteen I did a Mitzvah project, a good deed in my community, for the Sensory Processing Disorder Foundation (SPDF). This organization is close to my heart because this neurological disorder affected my family. After my project was wrapping up and I was reflecting upon it, I couldn’t just end there. The feeling I got from knowing that people were using this resource library that I created and benefiting from it, was beyond words.

My journey was not near the end, it was just the beginning. That was when it clicked. I now knew that, that giving of myself actually gave me more than I could have imagined. I continue to give to the SPDF as much as I can. In the past few years I have put in countless volunteer hours and the content of those hours helped to form the person I am today.

Just last summer, I participated in a summer camp they were holding for some of their special needs kiddos. These kids just lit up my life and re-established what I already kind of knew. When you give and help others, you are truly letting others help you. I will never be able to thank these kids enough and this foundation enough for bestowing me with the amount of light and love that they did.

This I believe to be true, that when you give of yourself and brighten someone else, the light inside of you grows brighter as well. When I gave of myself, all I could think about was when I would get the opportunity to do it again. Keep your light bright by keeping others lights brighter. And when you do, you just might glow.

About the Author:
Abigayle’s brother has SPD. Her passion for the SPD Foundation inspired her to help the Foundation create a resource library for families. She wrote an email to her family and friends, telling them about her project and asked them to either donate money or a sensory book for her cause. She collected more than $1,000 and over 115 books having to do with Autism, Asperger's Syndrome, and SPD.


 

Grit and Determination

HillaryHillary’s inspiration for running the Boston Marathon is her 3-1/2 year old son Cole. As a child with SPD, he struggles every day with just being a kid but is always smiling with grit and determination. Upon confirmation of her bib number, she decided to make her run a fundraiser for the SPD Foundation’s research. She set up a website to tell Cole's story and to take pledges. 
www.coloradogives.org/bostonrunforcole

Even though Hillary sustained a knee injury 22 days before the race and a stress fracture during the race, she was determined to finish her quest.  She said if she pushed Cole to never give up then she could do this.

“It was one of the best days of my life next to getting married and having children. Running down the hill and turning on Boylston Street — seeing my family cheering me on was an experience like nothing else.”

She raised over $6,000 dollars and has been a proactive advocate for awareness about SPD.

“It was terrifying for my husband and me when we realized Cole had issues and we didn’t know what it was. We decided to make Cole’s story public through Facebook in the hopes of helping other families advocate for their children to get the help they need. People from all over have reached out and it has made for an incredible supportive network. And even though this isn’t the path I thought my life would take, my tour guide is amazing.  Cole is an intelligent, loving, funny, and caring little boy who has a long road ahead of him.  All his therapists are very confident with the right therapies at school, a sensory diet through out the day at home and in the classroom, he will catch up.  Cole has shown more strength and drive in the last 3-1/2 years than most people show in their life.  I am running this marathon for my son to bring awareness and raise money for the Sensory Processing Disorder Foundation, so they can continue their research.”

Hillary’s passion and Cole’s determination is an inspirational story and we thank them for sharing. We hope that other families needing help will seek it and not give up.


 

Savannah Grace

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:
By Savannah Grace

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.

See Savannah’s new video, “Crush” at http://youtu.be/dzJcZE9beBY.
Check out Savannah’s website: www.iamsavannahgrace.com
Connect with Savannah on Facebook: https://www.facebook.com/savannahgraceshine

* If you are interested in joining an SPD Parent Connections group or starting your own group please visit www.spdfoundation.net/families or contact Carrie at parents@spdfoundtion.net.

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The Power of a Farm Animal

By Kirsten Pettersen Hanson
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)

* If you are interested in joining an SPD Parent Connections group or starting your own group please visit www.spdfoundation.net/families or contact Carrie at parents@spdfoundtion.net.

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Gabriel - Progress Through Multiple Therapies

My son, Gabriel, was diagnosed with SPD at 2 years of age. We were able to receive services through our local hospital's outpatient rehabilitation center with an Occupational Therapist who specialized in Sensory Processing Disorder – Britt Collins (co-author of the Sensory Parenting books). Upon initial evaluation, my son could not feel pain, hot/cold, the sensation of being hungry or full, etc. He feared touching sand, and filled his pockets with rocks at daycare. Because of his intense sensory seeking behaviors, in order to meet the proprioceptive and vestibular needs his body craved, my son's behaviors (leaning on other children, falling/laying on the floor, spinning, rolling, pushing, zero impulse control, etc.) were getting him into trouble at daycare, and we were worried he might be kicked out.

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!!

* If you are interested in joining an SPD Parent Connections group or starting your own group please visit www.spdfoundation.net/families or contact Carrie at parents@spdfoundtion.net.

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Gavin Miles Van Brunt

Meet Gavin, born 8-12-04 at a whopping 8 pounds 12 ounces.

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

Mom: Dawn

* If you are interested in joining an SPD Parent Connections group or starting your own group please visit www.spdfoundation.net/families or contact Carrie at parents@spdfoundtion.net.

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