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Too tight, too fast, too loud, too yucky, what is sensory defensiveness?

July 18, 2011 in Ask the Occupational Therapist, Featured, Insider Insight by Dr. Tiffany Showalter

Does your child get upset by tags in clothing, the sound of flushing toilets, or certain smells in the environment? If so, your child could be having difficulties with sensory defensiveness. Sensory defensiveness is a negative reaction to one or more types of sensations which require you as the parent to control his/her daily routine to avoid such things or deal with the fall out. These may include touch, movement, sound, taste/texture, or smell.

Tactile Defensiveness

Our touch defense keeps us from danger and helps us identify objects around us.

A child who is having difficulty with tactile defensiveness may overreact o ordinary touch, avoid washing hands and feet or brushing hair, and avoid light touch. In contrast, the child may look for deep touch like a bear hug or bump into furniture or other people frequently.

Vestibular Insecurity

Our vestibular system is our sense of balance and movement. It helps us know where our head and body are in relation to gravity and is highly connected to vision, posture, emotions, and coordination. A child who is having difficulty with gravitational insecurity may overreact to ordinary movement or be excessively fearful of common movements including riding a bike, swinging at the playground, or climbing a tree. He/she may tantrum when held upside-down. The child may avoid being in groups from fear of the unpredictability of movement by the others around him/her. These children often prefer sedentary activities.

Auditory Defensiveness

The auditory system is our sense of hearing and listening. This system helps us respond appropriately to the sounds we hear. A child who is having difficulty with auditory sensitivity may cry when a toilet if flushed or you are running the vacuum cleaner. This child may be seen covering his/her ears to block out “loud” noises or become extremely anxious in noisy environments.

Oral Defensiveness

Oral defensiveness interferes with our olfactory system, gustatory system, or tactile system. The olfactory system is our sense of smell while the gustatory is our sense of taste. These systems are closely related and impact our emotions and memory. The tactile system is involved in oral defensiveness via texture and temperature. A child who is having difficulty with taste, smell, and texture may be a “picky” eater. He/she may gag when presented with certain tastes, textures, or smells. This child may appear messy and resist brushing his/her teeth or washing his/her face.

The environment can be an overwhelming and confusing place for children whose sensory systems overreact to sensations they receive from the environment. So if this sounds like your child, you might want to consider contacting an occupational therapist for help.

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

Around the Community

February 18, 2011 in Featured by Admin Dawn

Have you voted for us yet?

Your nominations have been tallied, and five online communities have been selected to vie for a 2011 About.com Readers’ Choice Award. Before you go to the poll, you may want to take a moment to read more about each of the candidates, and review the Readers’ Choice Award FAQ for more information on the awards. You can vote once a day for as many days as you like between now and March 8. Winners will be announced on March 15.

You can vote for us every day until March 8th! Just enter your vote here: Vote for Best Special-Needs Online Community

Remember: Our Valentine What’s in a Name Giveaway is open until midnight PST tonight, February 18th!

Check it out here and then be sure to enter!

Share Your Celebrations

We’ve removed the Achievements plugin that people found confusing and instead we’re going to start featuring your family’s TRUE achievements! Has your child done his homework every single night this week without complaining? Did your daughter wow her physical therapist? Did you reach your own personal goal? We want to know! On the sidebar of our blog posts (see it over there to the left?) we’ve put up a form that lets you submit an entry for our blog under the new Celebrations! category. Once you submit and we approve it it’ll go out to let us all know your good news.

Don’t hold back!

We want to celebrate each other! This is different than our Community News feature. Community News is for news. A great blog post, an event you want us all to know about, something your local newspaper’s web site is featuring. But Celebrate! is for our personal victories. When we start getting submissions we’ll add a Celebrate! link to our navigation menu up there at the top of our site.

Welcome to New Members

Jeni

LoraI am a single mom of a wonderful 5 year old little girl. Jamie has Cerebral Palsy. She was officially diagnosed when she was 1 an half. She has had seizures since day one. In her short but sweet 5 years so far she has had seizures, CVI, lazy eye, dislocated hip, hip surgery(which didn’t work), Sensory disorders, a type of asthma, two brain haemorrhage’s at birth, severe allergies to food drugs and environmental and so much more that I can not begin to think of right off hand. My daughter is my angel. She is such a happy child. She loves the outdoors. She always seems to have a smile on her face no matter what. She hopefully will begin school this fall. I am excited but ever so nervous. As she will be going during the flu season and she can’t have the flu shot. Anyways, to wrap things up I try to do the best that I can for my baby girl and I love her ever so much.

Sue Robinson – Son slowly being diagnosed with Sensory Processing Disorder. Just turned 4 and has been having more of a difficult time. I am trying my best to learn more, be patient, but seem to be losing my cool more often than not.

Vanessa Infanzon – Mom to three boys, wife to husband of 13 years. Our oldest son has a thin corpus callosum and another undefined genetic disorder. He uses a walker to get around and does not talk. I stay at home for now, but look forward to writing more as the kids get older. I also facilitate team building and leadership activities for college age students.

Martin Frantz – For 32 years, I was a career prosecutor where I vigorously defended vulnerable populations like child victims of sexual assault. I retired and started a law practice helping families with special needs children. I was inspired by my son who was born 18 years ago with Down syndrome. As my son approached adulthood, I wrestled with tax laws and state regulations for disabled children. That’s when I decided to put what I learned together with my passion for helping kids.
I provide estate planning that will conserve assets and minimize taxes while maximizing the potential for your disabled son or daughter.

Amy Moss

Christy – I am a mother of 3–a boy and 2 girls. We’ve been on the “journey” since my son was 1 1/2, but he was officially diagnosed with “mild Asperger’s Syndrome” around age 8. He is now 12.

Lisa Noel – Blogger and fulltime working mom of three boys, two of which are dx’d and treated for ADHD.

Gina Gareau-ClarkI have adorable twin daughters with mitochondrial disease, and still testing for other diagnoses. I am the Executive Program Director for the Dare To Hope Foundation, contributor to the Children’s rare Disease Network, and a member of Parent to Parent’s Cobb Navigator Team. I run a small cake decorating business out of my house, http://www.twintierscakery.com

Annette Kay Fortner – I am a mother who has 2 young kids, boy (11) who has ADHD and an Auditory Processing Disorder, and a girl (6) who has developmental delays and has been in therapy for those since she was 9 mos. and that ended, but is continuing because of her motor difficulties. She also has a speech delay. My husband is in the navy and has been in for 19 years now and will soon be retiring. We are young..34 for me and 39 for him. It is very hard dealing with special needs kids and no one understands, so I am here for support.

christine – I’m 31 with 3 kids

coleen shiffert – I am 28 years old and a mother of 6 beautiful children. My 5 year old daughter Shelby was diagnosed with developmental delays and intellectual disabilities when she was about 1-2 years old. She also has failure to thrive (she has a g-tube), Kidney reflux, heart murmurs, growth hormone disorder (at 5 she only weighs 25 pounds), and hypothyroidism. My daughter is my hero for all the obstacles she has overcome and for all the strength she has. I have a wonderful and supportive family who keep me going even when i don’t think i can go on. I am truly blessed!

Rachel

Stephanie

Anne Zachry – I am a pediatric occupational therapist with over 18 years experience providing occupational therapy to children, along with caregiver instruction and support. I have a PhD in Educational Psychology. I’ve had articles published in my profession’s trade magazine and in peer-reviewed journals. I am currently employed as a school OT in Tennessee, working with students having issues ranging from mild fine motor problems to severe physical disabilities. I am certified to administer the Sensory Int System.

Have a blog?

Be sure to send me your link so I can add your feed to our activity stream! That way we can all keep up with your blog posts. Just send it to dawn@supportforspecialneeds.com

Happy new year everyone!

January 7, 2011 in Around the Site by Admin Dawn

Here’s what’s been happening around our community since we last updated:

Are you in Atlanta?

Join us on March 5th for our first (but definitely not last) In Real Life Connect event! We will be adding details over the next month as we finalize speakers but you can get a head start on registration here! Keep an eye out for our updates!

On the Forums

Julia is looking for tips on helping her son with his confidence issues. Have ideas for her? Please share them here.

Andy asked for (and got!) some tips on getting a new digital camera. (Did you know you can share pictures in your profile? Get more info on that here!)

Siobhan is offering a New Year’s discount on Creative Memories scrapbooking supplies! Go here for details — offer ends January 31st!

Melanie would like to hear from community members with experience changing a child’s behavior meds over here.

We have lots of new members! Welcome!

Vicky: “I am a mom to two dtrs who are my world. I am a nurse who currently works in a childcare center.”

Karen Yaughn: “I am a 48 year old single mom of a 7 year old daughter diagnosed with Freeman Sheldon Syndrome with Arthrogryposis, glenoid hypoplasia, midline cleft in the soft palate (repaired).”

The Domestic Goddess: “I am a Domestic Engineer, Total Babe and SAHM to two boys with autism, ADHD, OCD and a variety of other acronyms. I was a band geek in high school, live vicariously through computers and prefer dogs to people, which means I have STELLAR social skills.”

Renee Pratt: “I am a 29 yr old single mom. I have little boys who are my world. My 6 yr old has several disabilities. We currently live in Gwinett & are trying to build a support network with other social need families. My son attends Kanoheda. He is in 1st grade. He has trouble being social but does well doing one on one with a similar diagnosed child.”

Cheneespeaks

Julie Tutwiler: “mom of 2 kids – son has Down syndrome, ADHD and AV Canal defect; daughter has some ADHD and mostly LOTS of attitude”

Sadie

Laura LaPlante: “My name is Laura and I have 3 wonderful kids! My oldest who is 10, has Lyme’s disease, my middle who is 4 has moderate Sensory Integration Disorder along with Lyme’s which was passed through via pregnancy and my youngest who is now 18mths has severe “intolerances” to all Dairy and Soy products (both food and non food items). We remain active to the best of our ability. I have a wonderful, supportive Husband who tries his best. My jobs as both Mother, Wife and Employee to Sprint make my life non-stop.”

Jennifer: “Mother to 4. 2 That are differently-abled. My oldest is nearly 20, my 2nd(ASD-PDD-Nos) 15, my 3rd (severe verbal childhood apraxia, global) is 7 and my 4th is almost 4!”

Jennifer Giroux: “Mom and advocate of 3 children, the oldest of whom has hydrocephalus/strabismus/amblyopia and all the LDs that go with it: NVLD, apraxia, cognitive delay.”

Dana Sears: “I am a Blog designer and a Mom of three boys under five. My second son Mason has been diagnosed with Smith-Magenis Syndrome and PDD-NOS.”

Rachela

Carolyn Dagliesh: “My husband and I are the parents of two wonderful children. I have a home organizing business – Simple Organizing Strategies and I offer in home organizing support for general organizing, paperwork management and closet design. The larger part of my business is my Systems for Sensory Kids business – http://www.systemsforsensorykids.com. As the parent of a “sensory” child, I have learned the importance of organizing supports for “Sensory” Kids in the home. Sensory kids—like those with anxiety disorder, sensory integration dysfunction, learning challenges, ADD/ADHD, obsessive/compulsive disorder, high-functioning autism, Asperger’s syndrome, or other sensory challenges—often look at the world through a different lens. It can be challenging to connect with them, and little things can often turn into major stress points. Learning simple ways to create structure and routines as well as ways to connect and communicate can be life changing in your day-to-day living experience – something that can make the whole family more successful!”

Nicole

Mary

Stacy

Nicole Gutrich

Meagan Watts: “I am the mother of a 3 yr old with Childhood Apraxia of Speech and Sensory Processing Disorder. He’s making tremendous strides and working hard, but we have longer to go before he’s actually able to communicate with others.”

Christie Roberts: “I have two special needs grandchildren. I am a grandmother to ten children.”

Charity

I know we’ve missed a lot of new members since our Great Big Wish List giveaway derailed our community updates! If you would like a special shout-out for your intro, please contact me so I can add you to our list for our next update.

Meanwhile, did you know you can search member profiles? Just go to our members page and put your search term in the search box at the top of the list. You can also list members by new registrations, too, to see who has joined us recently.

We’re looking for your input!

What do you want to see on the site in 2011? So far we’re hearing you’d like more livechats! Michelle Howard has stepped up to volunteer to host a Rant Chat Thursdays at 8pm EST. Just drop in! You can check out Michelle’s blog including her Ranting Sessions for Stress Relief here!

Parental pursuit results in diagnosis

November 11, 2010 in Special Needs News by Admin Dawn

Imagine… You are lying there watching television with your child when all of a sudden he says, “Daddy, my feet are burning!” but there is no fire around or he goes to bed very happy and as soon as you tuck him in, he begins to sob uncontrollably or inconsolably about something completely random or from left field.

Try to fathom… You’re getting your haircut and the falling hair feels like razor blades cutting into your skin or you have to do physical activity or exercise so you can sit there for another 10 minutes before your muscles felt like they were going to jump out of your skin.

These scenarios are some of the unfortunate realities my son Dominic and countless others face on a daily basis…

via Parental pursuit results in diagnosis – timesherald.com.

Writing for Connection: Maria Melee

September 21, 2010 in Around the Web by Maria Mora

Maria Melee is a writer, social media consultant, a mom and our first featured Hopeful Parents contributor.

Can you tell us a little bit about yourself and how you got involved with Hopeful Parents?

When I started blogging in 2002, I just used it as a way to connect with some of my friends. I met new friends through that blog, including my best friend who ended up being with me in the hospital when I had my first son. I’ll be her matron of honor this fall. Because of that experience, I believe in the power of connecting with others online.

When my oldest son developed a chronic tic before the age of two, I began writing about it on a new blog I had just started, Mommy Melee. No one had really seen anything exactly like what he was doing, but it helped to write about it. When his pediatrician suggested we get it checked out, my blog turned into a place for me to express my fears and concerns. I struggled with the idea of saying or thinking that there was something “wrong” with my son. The friends I made through my blog virtually held my hand through every frustrating step in our process. Now that my son is four, we know that he has Sensory Processing Disorder, OCD and a tic disorder that is mostly like Tourettes Syndrome. I discovered Hopeful Parents when I started trying to connect with parents on the same path. While I knew many bloggers who write about the Autism spectrum, I had a hard time finding people who had experience with childhood OCD and elaborate tics. Hopeful Parents felt like the right place to reach out and find a community.

What is that you hope parents get out of what you write there?

I have second-guessed myself through every step of the process of finding help for my son. I’ve been scared, confused and paranoid. I’ve needed validation and support or just someone to bounce symptoms off of. The entire situation can be very lonely! I’ve often found myself slipping deeper into my own anxieties.

I hope that my story can help guide other parents who are walking this path. With very young children, it isn’t always easy to nail down what’s going on. Kids change quickly. Kids don’t have the cognitive ability to share exactly what’s going on inside. On top of that, it’s very easy to fall into a trap of thinking that you’re overreacting or being hysterical.

If just one mom or dad reads my story and says, “ah ha!” and feels reassured, I’ll be thrilled. There’s no substitute for a doctor’s care, but I think hearing stories and seeing examples can go a long way toward parents being able to evaluate what may or may not be going on with their children. Above all, I think we all need to know that it’s okay to tell our stories, as parents. We’re not betraying our children. There’s also nothing wrong with thinking something might be wrong. Even if it all or some of it ends up being a “normal” part of your child’s development. (It turns out ALL three-year-olds are jerks, who knew.) (Just kidding. Sort of.)

I hope that parents don’t feel isolated in their experiences. I hope that parents understand that reaching out for help makes them stronger and more emotionally available, and that seeking treatment is the absolute best thing they can do for their children.

What are some of the benefits you’ve found in writing your story?

Writing is very therapeutic for me. When I’m bursting to the brim with anxiety or sadness, I write what I’m feeling. I write about my confusion and conflict. It isn’t always easy for me to find the line between oversharing and telling my own personal story. I don’t want to invade my son’s privacy. Now that we know that what he is experiencing is in part a mental health issue, I am more sensitive about talking about it. I think part of this is my own hangups and the stigmas surrounding mental illness. Because of this, it’s even more important for me to push through my feelings and continue to write in a way that’s respectful but honest. Ultimately, I know that I can stand by every word I’ve said and that my son can one day read them and understand who I am as a person and how much I absolutely explode with my love for him.

Writing has also helped me stay grounded and maintain my sense of humor. My son is a funny, bright, amazing kid. He makes me laugh every single day. I have to laugh when he’s silly, I have to laugh at myself. I have to laugh when I act like that cliche crazy overbearing mom at preschool because that’s just who I am, and who so many of us are. The laughter and joy that comes with getting to know a complicated little person is priceless. Writing helps me stay in touch with that sense of gratitude and wonder. My kid is a cool kid.

In a more concrete way, writing my story has connected me with other parents who are experiencing a similar path. I recently read an amazing article about Tourretic-OCD that described parents as suffering from Alphabet Soup Syndrome. All the acronyms and mights and maybes make your head spin. SPD, OCD, TS, PDD-NOS, etc. No matter how good your doctors are, you have to do a certain amount of research on your own. And you absolutely must learn to advocate for your child to medical professionals and the school system. Writing has helped me navigate those turbulent waters. The experiences I’ve read about have cleared the path for me in some ways, and I hope I do the same for others.

We Walk a New Alphabet from Maria’s blog Mommy Melee

I took some time away from thinking. (Not really.) I took some time away from talking. (That’s more like it.)

Mostly because my whole being came to a choking halt when my son’s developmental pediatrician drew a little diagram in front of me to help explain why she felt that my four-year-old has obsessive compulsive disorder.

After that I heard the words “child psychiatrist” and “anxiety disorder” and I shattered.

I didn’t (don’t) know how to talk about it, the abrupt shift-change.

When my dad called that evening, I practiced saying it, got the words out calmly. And he said, “Okay, sounds good,” and it was a non-issue, just another answer. But I felt like I was ten years old screwing up my scales at the piano or getting a D on a math quiz.

“That’s crazy you know,” my husband said, letting me cry on him.

**

We’ve been on this road for so long, for a couple of years, the quirky what-if maybe-autism maybe-this maybe-that but not that and not that because. Because, I don’t know why not. I don’t know.

“I’m sorry,” I cried, later, but not to him. Alone. Thinking about what anxiety means to me, thinking about how it feels, how it runs in my veins and that I gave it to him.

(Shh, I know. I know I didn’t give it to him I know this isn’t my fault.)

His doctor looked me in the eye and said, “We do know that this runs in families, and with your history and your family’s history…” She trailed off.

He sat on the floor on the other side of the room, squeezing trucks and lining them up.

I nodded, of course, yes, of course. Sure.

**

He’s four. He is four.

What does he have to be anxious about? Not bills or deadlines (does he feel it when I’m tense and stressed?) not death or illness.

(Oh but he loves to talk about death, dead things, broken things.)

His sensory integration issues don’t help, probably, his occupational therapist tells me, all warmth and smiles and keeping me from going crazy. He feels different, the world feels different, other kids stress him out.

“He doesn’t talk about being afraid that much,” I say (seeking evidence to the contrary of this distressing possibility), trying to remember every time he’s ever been afraid of something. The dark? That’s normal. Dinosaurs? Dinosaurs are scary, man. Twisters? Blame the Wizard of Oz.

But it isn’t cut and dry, none of this is. Hell, we don’t even have a diagnosis yet, just more appointments on the horizon.

**

I don’t know how to tell this story, only how to live it. I fumble for the lines between his story and mine, I hope for the wisdom to know how to share this with grace and respect for a little indivdual who has only been around this crazy world for four years.

**

Bedtime and saying goodbye are the most rigid. Ten kisses, a hug, and a short script.

This week, the script became more complicated. Like a Doctor Seuss book. Back and forth.

“Goodbye,” he says.

“Goodbye.”

“I love you.”

“I love you too.”

“I love you,” he repeats.

“I love you too.”

“Goodbye.”

“Goodbye.”

He watches my face, waiting for the right words, the whites of his eyes showing a little and I can see the need there.

Something I read last week talked about rituals slowly, as kids get older, becoming more complicated, becoming more disruptive. I wonder at this as he bats his brother away and then simply screams inhumanly. Because a careful line of toys has been knocked out of order.

**

As he squeezes and carefully arranges and then grunts and hums and squeezes some more, his therapist nods and speaks to me in hushed tones. “That is what it looks like to me,” she says solemnly.

But we agree, smiling, that it’s fascinating, that he’s fascinating. So smart, so funny. So absolutely loving.

I don’t know why the thought of autism was easier, and why this is more frightening to me. I don’t know who my community is, or where to turn, or who else has kids like this or what the hell I do. I’m scrambling to re-gain my footing, to shake off the stigma I never knew I held.

I feel guilty for being freaked out now when I felt so assured before.

**

He’s just a little kid, barely more than a baby, and anxiety disorder makes my brain fast-forward to middle school and high school and college and sleepless nights and unhappy adulthood and God-DAMN-it I just want my little boy to be happy. Happy every day. Happy. Not scared, not scared of things I can’t see or touch or fight.

I am his mother and if I could I would tear the monsters down with my fingers and fists, stomp them into the Earth with my bare feet, shatter them with an unholy roar. You leave my son my alone.

**

When I pick myself up from my little meltdown, I settle into the words, into the thought of it, onto the road. This is a road I’m on, that we’re on together, that we’re all on. Slowly, so slowly, I’m coming to peace with the path—with the understanding that we have no destination. No final answer.

We only walk together, hand in hand, holding tight to each other.

Keep Myself Calm Giveaway

August 30, 2010 in Giveaways by Admin Dawn

Sew Sensory Weighted BlanketsWe present this giveaway thanks to Community Member Dawne Hammerschmidt, owner of Sew Sensory. and mom to Dane and Olivia. Dane has Down Syndrome and Sensory Processing Disorder. Here’s Dawne’s story from her about page:

“[Dane's] sleep was very restless, much of the time spent rolling, sitting up and falling back over, and falling out of bed – despite a barrier!  During the day he’d be very active with little attention span and very high frustration level.

Our Early Intervention worker had suggested the use of a weighted blanket and/or vest.  The ‘loaner’ blanket offered by the program had an extensive waiting list..so the research began.  What an eye opener!  Not only were these items very expensive, they were ugly and had a therapeutic look/feel to them.  The more I looked, the more I found that many of the manufacturers’ really don’t have an understanding of what they are selling.  Some are using lead materials to weight their products!!!  Many use organic materials which sounds great but may cause allergies, attract insects/pests and are unsanitary as they are un-washable.  Some even use rocks. Rocks are porous and retain some level of moisture  (even if they feel dry to the touch) which of course can lead to mold – then I thought; “Do I really want to put a  loads of rocks in my washer and dryer?”

As I continued delving into what I needed,  I found that there were pre-manufactured sizes and weights.  So despite the recommendation of a weighted blanket being 10% of my child’s weight plus 1 (one) pound (Dane weighed 26 pounds at the time) I could only purchase an 8 pound blanket!  It was about at this point that I decided I would be sewing my own.  After doing so and discovering what a difference it makes for my son, well, the whole family, I thought about how great it would be if other parents could easily find what is suitable for their needs.

Dawne is sponsoring this week’s giveaway for a weighted lap blanket! All you have to do to enter is be a member of our site and comment below so we know you want it. We’ll announce the winner next week! Meanwhile, check out Dawne’s site to see all she has to offer (and she takes custom orders)! Also if you have questions about the blankets, remember you can message Dawne by logging in, going to her profile and sending it from there. We know she’d love to hear from you!

Seeking sense sensibility for their kids

July 26, 2010 in Special Needs News by Admin Dawn

In a building at the Denver Tech Center, above a mortgage company and down the hall from a real estate surveyor, Lucy Jane Miller is trying to lead a revolution.

For years, families from around the world have come to Miller’s STAR Center for sensory processing disorder — a curious mix of problems that affects the way their kids’ brains experience movement, sight, smell, sound, taste, touch and body awareness.

Having spent a career working with the syndrome, she’s lobbying for recognition by a medical establishment split over the condition.

read more at Greene: Seeking sense sensibility for their kids – The Denver Post.

A psychiatric disorder? What do you think?

They just can’t stand it

July 21, 2010 in Special Needs News by Admin Dawn

It’s unbearable to wear clothing with tags. It’s impossible to use scissors, no matter how many times you try. All mushy or soft foods are unbearable – not because of the flavor, but the consistency.

Depending on whom you ask, it’s either common childhood behavior, a neurological disorder that requires intervention or something in between. Its name is sensory processing disorder, and it occurs, advocates say, when the brain cannot properly process incoming signals for an appropriate response.

read more at They just can’t stand it – CharlotteObserver.com.

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