The Weight of Silence as Parents of Kids with Invisible Disabilities

The Weight of Silence as Parents of Kids with Invisible Disabilities

The Weight of Silence as Parents of Kids with Invisible Disabilities

The weight of silence as parents of kids with disabilities is all too familiar to guest blogger Lisa Pelissier. In this post she explains why she and other parents don’t talk about what’s going on with their kids and why they might want to rethink that decision.

The world of special needs parenting is broad and diverse. Some of us are thrust into a world where we’re forced to wear the special needs banner day in and day out.

However, those of us whose children have invisible disorders—high functioning autism, ADHD, mental health issues, and more—have a choice about broadcasting our special need status. Do we choose to stay silent, to blend into the crowd, or do we choose to align ourselves with the special needs population?

3 Reasons We Stay Silent

There can be stigma associated with invisible disorders, especially mental health issues. Historically, people have regarded anxiety and depression as character flaws. They often are subject to comments like ‘If your child wasn’t weak, she wouldn’t be anxious.” Or “If you trusted God more, you wouldn’t be depressed.” There can be shunning that comes along with any invisible disorder. You’re different. You “ride the special bus”—used as a pejorative. As parents, we also receive blame. People say things like, “If your child has anxiety, it’s because you’ve been an abusive parent, or at the very least, a bad one.”

Who needs that? It’s easier to keep our mouths shut.

We don’t want our kids to label and therefore limit themselves. Autism doesn’t mean you can’t have friends. It doesn’t mean you can’t have empathy, we think. If my child wears his diagnosis like a name tag, he may use it as an excuse for why he doesn’t have to reach out to make friends, have to have compassion for others, or excel at his studies.

We want our kids to achieve their full potential. Why shout out diagnosis instead of ignoring it and hoping for the best?

A third reason we stay silent is because of our own denial of our children’s conditions. He’s not autistic, he’s just quirky. She’s not depressed, she’s just hormonal. It’s not ADHD, he’s just disobedient. Accepting a diagnosis comes as a blow to our hopes and dreams for our child.

Like the title of this website states, we have to find a “different dream”—something that can be difficult and painful to do.

2 Reasons We Shouldn’t Stay Silent

Invisible disorders are real. While it’s true that kids can be quirky, hormonal, and disobedient, it’s also true that kids can have real diagnoses of autism, depression, and ADHD, and those conditions can and do affect thinking and behavior. We do our kids a disservice when we deny their reality. Helping them learn about their condition and how it affects their thoughts, feelings, and behavior will give them the power to understand, learn, and grow—and to manage their health rather than pretend there isn’t a problem.

We can help others understand why our kids are different so they can be more accepting.

Many choose silence—until someone else speaks up. Being up front about depression, anxiety, OCD, ADHD, and other invisible disorders gives others permission to speak about their own difficulties. This can be especially true in the case of disorders we in the church may try fervently to hide because of shame and grief, such as in suicidal ideation. When you say, “this is my reality,” you find that others in your circle of acquaintance have been there too, even if they’re not ready to go public with it.

Where you expected to find condemnation and rejection, you find understanding, solidarity, and friendship.

As special needs parents, our burdens are heavy. Keeping them to ourselves not only deprives us of support, of someone to help us bear those burdens, it deprives others of the chance to grow in their own knowledge, understanding, and compassion.

You are not alone if your child is crippled by anxiety.
You are not alone if your child has attempted suicide.
You are not alone if your adult child who can “pass” for neurotypical can’t get their life together.
You are not alone if your child is too depressed to get out of bed in the morning.

But if you keep your troubles hidden, you’ll never know what kind of love and support you’re missing. You’ll never know if by speaking the truth, by freeing yourself from the weight of silence as parents of kids with invisible disabilities, you may give someone else a boost out of their own pit of silent despair.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

Photo by Kristina Flour on Unsplash

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Lisa Pelissier lives in Oregon where she is a homeschool mom and author of five middle-grade fiction novels, the second-grade Monsters series, and a YA fantasy novel. Lisa owns SneakerBlossom Books, offering Christian, classical homeschool Study Guides and curriculum. She blogs at Eleventh Willow, offering encouragement for Christians parenting the mentally ill. She also works as a freelance copy editor, copy writer, an artist, and a marketing editor. In her spare time Lisa enjoys playing the piano and fretting about things over which she has no control. 

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Choosing Acceptance and Advocacy as Parents of Kids with Disabilities

Choosing Acceptance and Advocacy as Parents of Kids with Disabilities

Choosing Acceptance and Advocacy as Parents of Kids with Disabilities

Choosing acceptance and advocacy as parents of kids with disabilities takes time. Today’s guest blogger, who wishes to remain anonymous, talks about making that choice as a parent many years ago and using what she learned to assist parents of her students who are struggling to make that choice today.

There’s nothing to worry about.

This ordinary statement, from the lips of the pediatrician, a few hours after my daughter’s silent birth, cut my life into two halves.

Before, I was an unsuspecting mother to be with an I-can-handle-it approach to life. A happy-go-lucky Christian woman who somehow thought faith was a shield to protect her from the worst life has to offer.

But as I absorbed this statement, somehow, in my core I knew that this pediatrician was mistaken, and so was my worldview. There definitely was something to worry about. My precious daughter was fighting for her life, and I had better start fighting for it too.

The events that transpired are another long story, but in a nutshell, our daughter was correctly re-diagnosed with EA/TEF in another hospital. Then, at three days old, she underwent a successful repair operation.

We could finally breathe again.

However, her struggles did not disappear. The months and years after her birth saw her back in hospital again and again with alarming frequency, as she coped with pneumonia, chest infections, and food blockages. Meanwhile, she struggled to swallow on a daily basis. My preconceived ideas of family life were turned upside down and inside out as I just struggled to feed her and stagger from one round of antibiotics to the next.*

So that pediatrician’s statement had well and truly thrown me into the second, more sober half of my life. 

I don’t hold any hard feelings towards him. After that surgery, I went back to the first hospital to find him. I explained the diagnosis, I hope, kindly. He had not read my medical notes which stated I had polyhydramnios (too much amniotic fluid) during my pregnancy. I later learned this was a warning sign of EA/TEF.

Fast forward 19 years and here I am, an Early Years Teacher. Sometimes this job entails the unenviable task of conveying difficult messages to parents.

  • Have you noticed anything unusual about your son’s development in comparison to that of his brother?
  • Have you considered a hearing test?
  • I would like to suggest you consider an assessment for your child.

These words, even when delivered with as much sensitivity as a teacher can muster, can be met with resistance and even anger. I have experienced more than once that, as the teacher, I can be the target of the anger.

I understand this.

Our daughter’s diagnosis meant that acceptance was thrust upon us in that moment. EA/TEF is a physical issue making swallowing impossible without surgery. Despite the challenges, we were able to move on towards coping with the situation by first accepting it. Other diagnoses can be more nuanced, more open to interpretation. Acceptance can sometimes be put off for a while.

Author Jocelyn Soriano says, “Acceptance is the shortest route to peace.”

  • Accepting that your child might be neurodivergent.
  • Accepting that your child might have extra physical challenges.
  • Accepting that we sometimes need, as Jolene has shown us, a different dream for our child.

Professionals might not always be sensitive or even right. But some of us do know the weight of our words. We know they have the power to cut a life into two halves. We do not speak for the fun of it. We speak out of necessity and in the best cases, with compassion.

These words are an uncomfortable but essential invitation to acceptance. 

So, if you are struggling with something a doctor or teacher has told you, don’t waste time or energy focusing on what the professional said or did. Choosing acceptance and advocacy as parents of kids with disabilities will help your family move forward. Your child needs your focus and energy to be on them. So be courageous. Find out the truth, accept it, and fight for your child.

*Everyone’s journey is different, but for us, life didn’t stay in that dark place forever. With the help of Christian friends and family, we slowly came through it. We are thankful that now our daughter is now an independent woman who lives a full life and can’t remember the last time she was on antibiotics.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

Photo by Bekah Russom on Unsplash

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The author of this post wishes to remain anonymous.

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Painting My Daughter in Color

Painting My Daughter in Color

Painting My Daughter in Color

Painting my daughter in color. This is a priority for guest blogger Laura Spiegel who wants people to see all the colors of her delightful daughter’s personality rather than the black and white of the condition she’s had since birth.

Every day, my six-year-old daughter surprises me. 

She wants to be a worm doctor when she grows up. You know the people who rescue crusty worms from the sidewalk after the rain? It’s apparently a thing.

She has named both her feet. Winston and Abby carry her everywhere, and they are feisty when their names are mixed up.

She talks to the flowers and dresses like a witch. A witch in a swimsuit who jumps through the sprinkler with her hat perched atop her head, to be more specific.

She invites the neighborhood pests to “ant parties” on our front sidewalk. The invitations are simple. Hamburger buns soaked in water and smashed onto the pavement. Never tried it? Give it ten minutes, and the critters will come.

“Close the door! You’re letting in flies!” I complain. “I like flies,” she deadpans as she marches down the sidewalk, gray wig in hand.

“This is my favorite book,” she declares. “I’ve never read it, but I like how [the author] decorates the cover and uses proper words and puts page numbers everywhere.” 

When she grows up, she wants to “change the world, like Martha King Jr.” She will start by “making it illegal to be mean.”

Each holiday, she packs a bag of stuffed animals and treasures from her room and gifts it to her mom, her dad, or her big brother. Not just the ratty old stuff. The good stuff too. 

She makes homemade books with stories, discussion questions, and a concluding word search. Her favorite involves the sun and the moon battling over who gets to be in the sky. Spoiler alert: they learn to share. 

She is slowly completing her mastery of bad words courtesy her obsession with The Sandlot. She just learned what’s funny about the planet Uranus. I’m sure it will make its way into a story soon.

She is the only person I know who follows up “I want to make God’s heart full today” with “By the way, Jesus hit me last Tuesday.”

Some days, it takes an act of God to get her to do her respiratory therapy for her cystic fibrosis. Other days, she’s done her therapy and run five laps around the yard for good measure – all before I wake up.

She likes to listen in on my board meetings with the Cystic Fibrosis Lifestyle Foundation. She quietly asks whether the other members do mask and vest like she does. The more people who do it, the better.

She names her medicines by taste. This makes medication reconciliation with the pharmacist a real treat.  

She pumps herself up before taking the “yucky, disgusting one” or taking on the monkey bars. “You can do this,” she’ll whisper. “You can do hard things.”

My daughter’s cystic fibrosis is an important part of her, but it doesn’t define her any more than her witch hat or her left foot Abby. To define her by her health alone would be to paint her life – her world – in black and white. 

My daughter is a warrior, a dreamer, and a lover and protector of all things big and small. She also lives with cystic fibrosis. 

And me? Like so many other parents of children with special medical, developmental, or behavioral health care needs, I’m painting my daughter in color.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at laura@paintherincolor.com, and on Facebook and Twitter.

Author Jolene Philo

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My Dad and My Uncle Overcame their Political Divide. We Can Too.

My Dad and My Uncle Overcame their Political Divide. We Can Too.

My Dad and My Uncle Overcame their Political Divide. We Can Too.

My dad and my uncle overcame their political divide and other personal differences day after day, week after week, year after year. Pretty remarkable because they were very different men.

My dad was a Democrat.
My uncle is a Republican.

My dad was a jokester.
My uncle is grave.

My dad was an extrovert.
My uncle is an introvert.

My dad lived to talk.
My uncle lives to think.

My dad was a homebody.
My uncle loved to travel.

Despite their many differences, they appreciated each other and they were good friends. 

In large part, my dad and my uncle overcame their political divide by talking about what they had in common.

Their love for their wives who were sisters.
Their love of their children, their nieces, and nephews.
Their roles in their wives’ large, extended family.
Their shared histories within their family, church, and community.
From the outside, my uncle appeared to be the privileged one. 

My uncle was strong and healthy.
My dad was in a wheelchair.

My uncle had a good job.
My dad left a job he loved when multiple sclerosis disabled him in his early 30s.

My uncle stopped into visit my dad after work several times a week.
My dad waited all day for my uncle to come.

My uncle lifted my dad off the floor when he fell off the toilet.
My dad sat silent while my uncle wiped away the feces smeared on Dad’s body.

My uncle took his kids, his nieces, and nephew camping.
My dad wished he could do the same and was all smiles when my uncle and his family made that happen.

From the outside, Dad appeared to be the vulnerable one. Those of us on the inside saw Dad give as much as he received.

When my uncle despaired of our country’s direction, my dad pointed him to hope.
When my uncle arrived worn down by work, my dad made him laugh.
When my uncle piled our families into his station wagon for an adventure, Dad’s joy was contagious.
When my uncle carried Dad to the basement during tornado warnings, my dad winked and said, “We’ve got to stop meeting like this.”

My dad and my uncle overcame their political divide day after day, week after week, year after year because they understood that the externals didn’t matter. What mattered was using their talents, privileges, strengths, and weaknesses to build a better life for their families.

When my uncle came to my dad’s funeral, my sister and brother and I tried to express our gratitude for all he had done to enhance Dad’s life and ours, too. 

My uncle held up a hand to silence us. “I want you to know,“ he said as a smile graced his face, “it was good. For me as much as for your dad. It was all good.”

My dad and my uncle overcame their political divide and found good on the other side—good that has blessed both their families for more than 65 years. 

Imagine the good our country could do if we used our talents, privileges, strengths, and weaknesses to build better lives for everyone who lives here. If people as different as my dad and my uncle could do it by talking about what they had in common, maybe we can too.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page. 

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Jolene Philo is both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.comJolene and her husband live in central Iowa.

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Being My Child’s Voice

Being My Child’s Voice

Being My Child’s Voice

Being my child’s voice after he was born in 1982 was difficult. But it was nothing compared to Trish Schaeffer’s advocacy to get the wheelchair her son needs. Read on to discover what keeps her going.

Being my child’s voice when everyday problems arise as the parent of a boy with disabilities is a journey. I have so much chaos going on any given day and come out of it wiser and more tired. 

But does that stop me from being my child’s voice again and again? 

No. It will never stop me or you from giving children the best we can. I’m not alone in this and neither are you. The problem I loathe the most is trying to get my child the adaptive equipment he needs. In this day it’s a long waiting game matched with a battle of wits and a will to win. 

The battle is with the insurance companies and the medical equipment companies. I get that nothing happens over night or in a month. 

But why does it feel like a hostage negotiation and an uphill battle of over a year? Do they want to break me? Drive me insane? 

Being my child’s voice meant putting in a request and year and six months ago to get   him a wheelchair when he grew out of his old one. I am waiting as the company has not even submitted it to the insurance for pre authorization. Put on top of that I’ve made a phone call at least every week since, and have not even gotten a call back on the status of his order. 

Now he is too big for his old chair and cannot start school without the new one we should have had over a year ago. 

I have lost my mind and sleep over the whole ordeal and even hurt my back because of the fact that I now have to carry him at fifty pound because of not fitting in his old wheels. 

How much longer can this battle go on? It’s a test of wills at this point. First the battles for insurance to pay for it. Then the medical company has dropped the ball for a year. And today I found out I may have to battle the insurance company again because the old paperwork expired.

Despite it all I will continue to fight for my son’s new chair and endure back pain for him. He is worth it all. 

I hope that someday insurance and companies will change with the companies, and it becomes easier for kids to get medical equipment. Until then I will continue being my child’s voice and make do with odd adaptations for my son. 

  • Like pool noodles under his fitted sheet to keep him positioned at night. 
  • Or a shade cover from an old tricycle attached to his wheels for sunny days. 
  • Or old yoga mats or nap mats to change him on public bathroom floors when there’s nowhere else to go. 
  • The simple fact is that I get it, you get it, we all get it. We lose our minds and the will to fight, but we keep going because it’s for our children. When people say that a special needs parent has the patience of a saint, is very true. We wait…and wait…and wait…and wait….with patience, grace, a sanity check of two, and maybe an adult beverage. Then we wait some more. 

I may still be waiting for my son’s wheels when you read this. You may be waiting for something, too. If you feel you you cannot wait any longer, contact the Better Business Bureau. Contact a community outreach program like Easter Seals and see if you can borrow adaptive equipment. Check with your school or a veteran’s or children’s hospital and see if they have any leads for you. Contact your city, state, or national representatives and about new bills to make equipment more accessible. Talk to anyone who will listen and don’t feel afraid to share your story or opinion.

You have a voice and you are your child’s voice. I have a voice and am being my child’s voice. It’s up to us to be sure our children are heard. 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Trish Shaeffer is the mom of 3 active boys with special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Schaeffer.

Author Jolene Philo

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Navigating an IEP Meeting During the Coronavirus Shutdown

Navigating an IEP Meeting During the Coronavirus Shutdown

Navigating an IEP Meeting During the Coronavirus Shutdown

Navigating an IEP meeting during the coronavirus shutdown can be tricky, but it’s not impossible. Guest blogger Jessica Temple offers tips parents can use to be on top of their game and remain tearless now and after the shut down ends.

We recently had an emergency IEP meeting, the second one we’ve attended, for our 4-year-old son who has autism. My husband and I were woefully unprepared for the first meeting.  We didn’t know how to prepare, what our rights were, or how to work with the system.

This second meeting came almost 12 months afterwards. I have learned a lot during that year about what goes into IEPs, what to say, what not to say, what rights parents and our special needs children have, and how the meetings are run. I am here to share tips about navigating an IEP meeting during the coronavirus shutdown without shedding tears. The goal is always to get the appropriate IEP for your child. (Bonus tip: Never say best or most, just appropriate.) 

Tip #1: Find Advocates

Find someone who has a great deal of knowledge, and ask, ask, ask! This can be as informal as a friend who has gone through many IEP meetings, contacting the Parent Training and Information Center through your state, or hiring a formal IEP or disability rights advocate. I used the free services through my state. They were kind enough to offer me 3 people to talk to. These individuals provided documents about our rights, important buzzwords, as well as IEP document phrasing and what to say if the team denied an accommodation we deemed necessary. They helped me to create and word several goals and services that would be the most useful to my son at his present age and stage. They also provided snippets of case law should our rights be violated. 

Tip #2: Attend Workshops

Many states have free workshops through their school systems. Different special needs societies also have free workshops dedicated to children’s education, special needs, and IEPs. We attended a workshop a before our IEP meeting. They went through every page of a blank IEP and discussed what services are appropriate when, how to ask for what’s needed, how to have it phrased in the actual document, and what to do if the IEP team pushes back. On top of that, they said our local school system has a free,special needs lending library. They also brought a large selection of books specific to IEPs. 

Tip #3: Read Books about IEPs

I flipped through many of the books at the workshop, and selected the four that I found most useful and relevant. They discussed each component of the IEP, the case law related to the IEP, and step-by-step ways to solve problems. The books had templates for letters to write to the IEP team, examples of questions to ask, instructions for writing effective goals, and strategies to resolve disputes. The four books I recommend are:

The Art of Advocacy by Charmaine Thaner, M.A.
Negotiating the Special Education Maze by Winifred Anderson, Stephen Chitwood, Deirdre Hayden, and Cherie Takemoto
The Complete IEP Guide by Lawrence M. Siegel
From Emotions to Advocacy by Pam and Pete Wright

Tip #4 Attend a Local Support Group

We attended several local autism support group meetings. The individuals who attend these meetings have often been in the special needs world for a long time and have experience with IEPs. They provided tons of handouts, resources, and had another lending library! They were supportive, understanding, and tried to answer my questions. 

Tip #5: Access Online Resources

I have used the internet to find local support groups and Facebook groups. I found local Facebook groups to most beneficial as other ones were either too general or didn’t provide helpful enough information. Websites specific to a specific disability explained what should or could be included in the IEP for that disability.

These websites have copious information related to laws and IEPs: 

Wrights Law 
A Day in Our Shoes
The Wrightslaw Way
National Disability Rights Network
Education Law Center

Tip #6: Listen to Podcasts

I love podcasts that provide useful help with IEPs, important perspectives, and information on disability rights. Here are my favorites:

Don’t IEP Alone by Lisa Lightner
LOMAH Special Needs Podcast
Thriving in The Midst of Chaos with Jessica and Lewis Temple 

Tip #7: Coronavirus and IEPs

Coronavirus has thrown a monkey wrench into IEPs. These resources may be very helpful  for you to learn more about how this may affect your child, what to do in this unprecedented time, and what your rights are:

United States Department of Education California Department of Education American Bar Association 
National Center for Special Education in Charter Schools 
Parent’s Place of Maryland

Tip #8: Coronavirus and Homeschooling

The following resources may be very helpful to keep your child’s IEP and services on track until schools are in session again and help you with homeschooling:

A Day In Our Shoes Homeschooling
Resources School Closure Toolkit
Easter Seal

IEP  meetings are stressful. They are a lot of work, and there is a lot to know. However, if you utilize these resources and arm yourself with knowledge, you will be tearless, successful navigating an IEP meeting during the coronavirus shutdown, and satisfied with the IEP you and your child’s team put together. 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jessica Temple, PsyD, ABPP-CN, is a board-certified adult clinical neuropsychologist. She has two children who have special needs. She and her husband, Lewis, host a podcast called Thriving in The Midst of Chaos, where they talk about all aspects of special needs including getting a diagnosis and treatment, self-care, relationships, transitioning to adulthood, school, and finances. They created Thriving in The Midst of Chaos to offer support to others in the special needs world as well as to provide an easy way to find the most useful resources. They aim to share helpful resources with others, advocate for improvement, change in the special needs world, and offer a different perspective on parenting.    To find out more about how Jessica’s work can help you, contact her at fubarpod@gmail.com or @midstofchaospod on all social media platforms.  

Author Jolene Philo

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