Sensational Success Stories

 

 

Overcoming SPD: A Teen's Story

 

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

 

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A Young Adult With SPD Shares Her Struggles

 

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 (which I do). It wasn’t until one day that my mom surfed the internet and found out what I really had.

I’ve had therapy, both at school and with an occupational therapist. I’ve had a prickly brush go on my arms, back, and legs but that didn’t do much.Marching band

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.

RosebowlThere was one time that my high schools (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,

Camille Arana

 

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A Teenager's Success Story: A Look Back

 

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.
      
Despite the multiple negatives, there was still a positive twist. SPD wasn't, and still isn't, recognized as a condition. Not enough research had been done on it in time for the psychiatric handbook refresh. One of the biggest arguments against SPD as a diagnosis was that these complications, over- and under-stimulation, could easily be ADD or even Autism. Lucky for me, they needed someone with signs of SPD and without ADD or Autism for their research, and I fit the bill perfectly. I would be able to get treatment as part of the study, and the usually expensive therapy would be free.
      
The best treatment for SPD was Occupational Therapy, which in essence had me moving between different styles of platforms suspended from the ceiling over a floor covered in gym mats. My therapist, a nice British woman named Andrea, told me which platform to move to, and I would try to get there. At first, I struggled. Some platforms were easy enough to get on, and would only take a couple of tries. There was one, though, that was evil. It was basically a gymnastic vault horse, covered in padding, and suspended from the air without any handles. It was nearly impossible to grip, since it hung higher than most of the other platforms, and it was always just a little bit out of reach. Sometimes I would spend an entire hour trying to get on that annoying horse, and still never get it. Weeks passed, and I managed to squirm onto it if my therapist held the platform closer. Then one day, without any help, I reached for the horse, pulled it closer, got my leg over, and it was over. I had conquered the horse. In my moment of glory, I heard Andrea say, "Good, Woody. Now, move that one." The phrase "get back on the horse" never had more meaning.
      
In the end, I'm still not a normal kid. I often prefer the company of myself to the company of friends, I listen to dance music, even when I'm not dancing, and my current dream careers consist of Imagineer at Disney or CEO of Disney. The only difference is that now I play varsity basketball, sit in the front row at concerts, and hate cooked carrots because of their flavor, not their texture. As for the other stuff, I think why be normal? Being different is way more fun.

 

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Amy Bornhoft, SPD-PC host: The need to fund early intervention programs

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
We cannot afford for them to be cut!

By Amy Bornhoft

Madison and AmyMy 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

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Sensational kid scores with the San Francisco '49ers (and us)

AnthonyAnthony 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:

  • Collecting close to 3,000 pink Yoplait yogurt lids to send to the Susan G. Komen Foundation to help find a cure for breast cancer. Yoplait donates 10 cents to the foundation for every lid collected. "Everyone has a mother and grandmother, and I want to make sure none of them get breast cancer and if they do that there will be money to help them," he says.
  • Making a three-mile walk to raise money for a foundation seeking a cure for lupus, an incurable disease in which the body's immune system attacks healthy cells and tissues.
  • Spearheading a fundraiser for a local family that lost its husband and father in a motorcycle accident because "the kids won't get to see their father any more and they need help."
  • Working with fellow Lockwood 4-H Club members to raise money for Hurricane Katrina relief and to fund scholarships and summer camp for needy children.
  • Conducting awareness programs for autism coast to coast by writing letters and newspaper articles and making presentations about autism to raise money for autism research.

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.

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A California Mom: Looking back 31 years later

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

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Nicole: I have done much more than I ever thought I would

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.

NicoleAfter 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

 

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Lisa Aitkens: Our daughter has improved on all levels

(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.

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Chynna Laird: "My Sister Is My Bestest Friend"

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.

If you have a sensational success story to share, please send it to info@spdfoundation.net. Please keep it to one typed page. Photographs may be submitted with it.

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