My Rallying Cry to Everyone With PTSD

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Driving home the other day, I thought about my post-traumatic stress disorder (PTSD) diagnosis, and all the shock and shame that came with it.

I thought of subsequent visits to therapy and all the prescriptions I’d filled.

I thought of how often “experts” talk to us — those with PTSD — one by one. How we sit in the same chairs in the same offices and they listen to us, but we don’t get to hear each other.

It tricks us into thinking we’re alone.

People with PTSD have almost always been in total silence, shame and isolation outside of clinical settings or cyber chat rooms.

But things are changing. We’re coming out of the shadows. We’re using our voices. We’re saying, “Here we are” and claiming our role as experts, knowers and truth-tellers. We’re bonding as rape survivors, veterans, adults abused as children and those who lived through horrific car accidents.

We’re starting to notice, nod at and bear witness to one another.

But even so, too often we speak in whispers. We hesitate and stammer and apologize.

How could this change?

How could things be different, better and easier from the get-go for those receiving a PTSD diagnosis?

What if instead of just pills, pity or pamphlets we got a letter or a hearty handshake, too? What if we got a talking to from someone who’s been there and walked the same road?

What if we got a mentor?

What if we gave and got letters, notes and messages from the been-there tribe?

Dear Kick-Ass Warrior,

You survived something that tried to snuff you out. It didn’t. Congratulations.

P.S. You have PTSD.

Wouldn’t that be a little bit better?

What if we were that real, irreverent and honest?

What if we shared survival recipes, tools and secrets?

I know it’s been epically hard and you’ve battled – are still battling. There might have been times you wished you didn’t live, but you kept at it. That’s how gritty you are and I’m so glad.

What if we said all of the unsaid things we feel, think and notice?

I know the blood isn’t dry and the wounds are still gaping.

I know it’s been forever and still feels fresh and raw.

What if we said it all without censoring or apology? What might our words do for one another if we gave them freely?

I know you feel weak. I still think you are stronger than steel. Rest up.

Let me tell you what I see – your bravery is staggering. Go you.

Your victory was unlikely. The odds were stacked against you. Trauma raged and furied and slammed your life and you’re still here. Wow.

What if we gave each other permission to swear and rant and be angry?

F*ck. F*ck. F*ck it hard and often. Go to hell. It hurts.

What if we admitted it all?

F*ck-yeah, I’m angry and sad.

Your scars and injuries will not scare everyone forever.

Not even you.

And what you are now is beautiful, needed and meaningful.

Can you see me cheering, roaring and on my feet for you?

You are not damaged or broken beyond repair. That awful feeling is just a feeling.

And it can change.

Let’s say true things and be a lifeline to one another. No sugar flower BS or sing-song sunshine when it’s raining inside. No platitudes. Rainbows will return, but it might be stormy for a long time.

Keep going. Hang on. Trauma tried to kill you. It didn’t. That alone makes you all kinds of amazing.

Trauma sucks. You don’t.

I believed for so long the best I could do was manage, gut it out and suffer with some grace.

I gave up on happy, peace and love.

I gave up on people and myself.

I was wrong. I was wrong about all of it. I love life and myself now.

You might be wrong, too.

Someday, you might even say, “Congratulations warrior – you have PTSD.”

And you won’t feel pity or shame.

Not a bit.

None.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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To the Person About to Adopt a Child With Down Syndrome

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Dear Parent-to-be,

Welcome to the first day of the best of your life.

There are so many things I want to tell you, I’m bursting. I’m so happy for you that I’m not sure where to begin.

Perhaps I should start with the words the social worker said the moment she placed my son, Charley, in my arms 25 years ago. He was 2 months old then. “Get ready for more love than you will know what to do with,” she said.

I didn’t know it then, but she was right. There are no words to describe this kind of love.

How can you verbalize the magic of those eyes that look so deep into your soul, even you never knew how deeply you existed? It will happen, and you, my friend, will open up like you never have before. Life won’t look the same as it did before.

Your life is about to change. Every parent is forced to change routines, priorities and all the things that go with them. But there’s so much more because the change you’re about to experience is a change in you. A reinventing so profound you may not even see it for years to come, and here’s the wonder of it — it’s coming from the one source who wouldn’t change you for the world.

Although there have been great strides made in awareness of Down syndrome, you may be shocked by the insensitive remarks of others. Or, as one woman said about our Charley, “He’s damaged.” There will even be uninformed comments such as, “Is he still Downs?”

I don’t know how many times I’ve sat in a doctor’s office, only to have some parent shield their child from mine, as if his Down syndrome is contagious. You may see fear on their faces and pity in their eyes. And you will shake your fist at their ignorance. Then, just as angry as you feel, you will find yourself feeling sorry for them. Pity those who don’t know the unbridled heart of Down syndrome; they could use a dose of what you live with every day. Believe me, most people are curious and wouldn’t hurt you or your child for the world.

My husband and I are acutely aware of the gift we’ve been given. Each time we’re knocked down by this thing called life, all we have to do is look at Charley’s face. We see God there. His affirmation. His endless hugs that wrap around us like a warming blanket. His smile that says, “You are still OK with me.” His words that say, “I love you much.”

So often I feel unworthy of him. I believe Charley is exactly who he’s supposed to be — a person who calls those around him to open their hearts. To accept others just as they are. I believe that when God bestows that extra chromosome, it’s His way of saying, “You only think you know what matters.”

People often say we must have incredible patience to have chosen a “child like that,” but they would be wrong. It’s our son who has taught us patience. He had to be patient with us while we learned what it meant to be his parents.

You may have to defend your decision to adopt. I don’t know how many people tried to talk us out of it, but there were several. We’ve heard it all. “Are you sure you know what you’re doing?” “It’s still not too late to change your mind.” “Why would you put yourself in that position?” “It’s a lifetime commitment, you know.”

I won’t lie to you, it’s not an easy journey. It’s not for everybody. It’s a life that demands all of you, 100 percent. You will be tested, sometimes daily. Some days you will know a lot. Other days, you will wonder if you know anything at all. And just like any other parent, there will be those moments when you will want to pull your hair out. But then, just when you need it the most, there will be that hug around your neck, and that sticky kiss on your cheek that will pull you back from the edge. Those are the moments when your child’s eyes will melt you like butter, and you’ll wonder how you ever lived without him (or her), or if you ever could.

The good news is that much has changed for parents of people with Down syndrome since we adopted Charley. There are systems in place that weren’t there before.

There is a community of families who reach out to each other and offer their experience, strength and hope. There are associations, blogs, Buddy Walks, Special Olympics and a host of families on the Internet. Don’t be afraid to reach out. These are the people who will offer you the hand of friendship and much-needed social connections.

I could go on and on, but I’ll leave it at this: When you’ve had this gift in your home, when you’ve been loved like no love you’ve ever known, when you’ve had your soul opened up, don’t forget to pay it forward. There are people who need your story. Help them to know your child. Help them see what you see.

The words I heard 25 years ago still echo in my thoughts today. They’re the words I now say to you: “Get ready for more love than you will know what to do with.”

Welcome to the first day of the best of your life.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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When I Read the R-Word in a Best-Selling Author’s Book, I Had to Speak Up

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I recently stopped reading “Who Do You Love” — the New York Times best-selling novel by Jennifer Weiner — because the author used the R-word in the book. I had a big long rant on my own little blog, and when I published the post, I felt very pleased with myself.

After a few days, I realized I was still mad. It’s like when someone says something you disagree with, and instead of speaking up, you walk away and think about all the things you wish you had said out loud.

So I decided to tweet the author to let her know I was affected by her choice of words and sent her my post. My tweet didn’t ask for much:

I attached the blog post and figured that would be that. At least I went right to the source and let her know how I felt. To my surprise, not only did she tweet back, she tweeted out the passage in the book, which takes place in 1993, and asked her Twitter followers if they felt she had done anything wrong.  

They responded in droves. Almost all of them felt like I was being too sensitive, and I was asking for history to be rewritten. The word wasn’t an insult to them. One person even posted this comment on my blog: “The bandwagons people jump on as a result of their offspring.”

My response to her was simple. The word is an insult (and it was back in 1993, too), and that I wasn’t the only one who thought so. I also sent her a link to R-word.org and a link to a Time.com story about John Green’s apology for using the R-word in “Paper Towns.”

After the trolls went on for a while, other people who agreed with me started to join the conversation. Siblings, friends and other parents of individuals with intellectual disabilities jumped in with their take on why a writer in 2015 shouldn’t use the word — even in the context of 1993. They cited experiences, blog posts and videos they had created to help the “Spread the Word to End the Word” campaign. It was very inspiring that one little tweet could rally such thoughtful and heartfelt responses. It made me glad I spoke up despite all the opposing tweets.

And then Jennifer Weiner tweeted this:

She could rewrite to remove the word. She could be true to the character and remove the word.

I cried. That one little tweet rallied a whole community and made a best-selling author reconsider using the R-word in her novel.

This all started with an open letter to Jennifer Weiner. I’d like to amend it to this:

Dear Jennifer,

Thank you. Thank you for responding, thank you for listening and thank you for understanding that the words we all choose can make a difference. When people use the R-word, it reinforces the stereotype that kids like mine won’t amount to much. It tells a teacher there’s no point in trying to teach her things — they must be beyond her grasp. And it tells a future potential employer that there’s no way she could do the job. It tells my son his sister isn’t worth much to the world, and it tells her she doesn’t matter.

Thank you for making her, and every individual with an intellectual disability, matter to you and to your readers.

It’s just a couple of words to you, but to me, it’s a brighter future for my kid. It’s everything.

Oh, and now I can’t wait to finish the book. So thanks for that, too.

I’ve always known you can’t change the world by keeping quiet. But I’ve learned you don’t necessarily need a megaphone to do it. Sometimes 140 characters, a little passion and a little help from other people who believe in the same world that you do are enough.

melanie.3-001

Follow this journey on Mommydo.

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Special Ed Teacher Says She ‘Cannot Justify Making Students Cry Anymore’

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Wendy Bradshaw has had enough.

Bradshaw, who has her Ph.D in education, is a teacher in Polk County, Florida, specializing in working with infants through fifth-grade students who have disabilities, The Washington Post reported.

On Friday, Oct. 23, she quit her job, according to her Facebook page. Bradshaw sent a letter of resignation to her school board explaining that she could no longer stomach doing her job within an education system that subjects children with special needs to standardized testing. Bradshaw is tired, she says, of making kids cry.

“My graduate work focused on behavior disorders, so I can say with confidence that it is not the children who are disordered,” Bradshaw wrote in the letter she posted to her Facebook page. “The disorder is in the system which requires them to attempt curriculum and demonstrate behaviors far beyond what is appropriate for their age.”

Today I resigned from the school district. I would like to share with you what I gave them. Feel free to share it if it…

Posted by Wendy Bradshaw on Friday, October 23, 2015

The letter originally appeared on the website of Opt Out Florida Networka nonprofit organization Bradshaw is involved with that advocates against test-based education.

Read Bradshaw’s full letter below: 

To: The School Board of Polk County, Florida

I love teaching. I love seeing my students’ eyes light up when they grasp a new concept and their bodies straighten with pride and satisfaction when they persevere and accomplish a personal goal. I love watching them practice being good citizens by working with their peers to puzzle out problems, negotiate roles, and share their experiences and understandings of the world. I wanted nothing more than to serve the students of this county, my home, by teaching students and preparing new teachers to teach students well. To this end, I obtained my undergraduate, masters, and doctoral degrees in the field of education.

I spent countless hours after school and on weekends poring over research so that I would know and be able to implement the most appropriate and effective methods with my students and encourage their learning and positive attitudes towards learning. I spent countless hours in my classroom conferencing with families and other teachers, reviewing data I collected, and reflecting on my practice so that I could design and differentiate instruction, that would best meet the needs of my students each year. I not only love teaching, I am excellent at it, even by the flawed metrics used up until this point. Every evaluation I have received has me rated as highly effective.

Like many other teachers across the nation, I have become more and more disturbed by the misguided reforms taking place, which are robbing my students of a developmentally appropriate education. Developmentally appropriate practice is the bedrock upon which early childhood education best practices are based, and has decades of empirical support behind it. However, the new reforms not only disregard this research, they are actively forcing teachers to engage in practices which are not only ineffective, but actively harmful to child development and the learning process. I am absolutely willing to back up these statements with literature from the research base, but I doubt it will be asked for.

However, I must be honest. This letter is also deeply personal. I just cannot justify making students cry anymore. They cry with frustration as they are asked to attempt tasks well out of their zone of proximal development. They cry as their hands shake trying to use an antiquated computer mouse on a ten year old desktop computer which they have little experience with, as the computer lab is always closed for testing. Their shoulders slump with defeat as they are put in front of poorly written tests that they cannot read, but must attempt. Their eyes fill with tears as they hunt for letters they have only recently learned so that they can type in responses with little hands which are too small to span the keyboard.

The children don’t only cry. Some misbehave so that they will be the ‘bad kid,’ not the ‘stupid kid’, or because their little bodies just can’t sit quietly anymore, or because they don’t know the social rules of school and there is no time to teach them. My graduate work focused on behavior disorders, so I can say with confidence that it is not the children who are disordered. The disorder is in the system which requires them to attempt curriculum and demonstrate behaviors far beyond what is appropriate for their age. The disorder is in the system which bars teachers from differentiating instruction meaningfully, which threatens disciplinary action if they decide their students need a five minute break from a difficult concept, or to extend a lesson which is exceptionally engaging. The disorder is in a system, which has decided that students and teachers must be regimented to the minute and punished if they deviate. The disorder is in the system which values the scores on wildly inappropriate assessments more than teaching students in a meaningful and research based manner.

On June 8, 2015 my life changed when I gave birth to my daughter. I remember cradling her in the hospital bed on our first night together and thinking, “In five years you will be in kindergarten and will go to school with me.” That thought should have brought me joy, but instead it brought dread. I will not subject my child to this disordered system, and I can no longer, in good conscience, be a part of it myself. Please accept my resignation from Polk County Public Schools.

Best,
Wendy Bradshaw, Ph.D.

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After Years of Unemployment, Here’s How I Succeed at Work With My Disabilities

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I am an author, artist, public speaker and government official. I also have Asperger syndrome and atypical schizophrenia. While I’m currently working, this wasn’t always the case. Every day when I arrive at work, I stop briefly in the foyer of my office building to reflect on how fortunate I am to have a job after living on welfare benefits for 15 years. There is no such thing as a typical day for my mind — every day is a new adventure (or challenge). Succeeding at work when you have a mental illness and other challenges is mostly a matter of finding the right support and building your own strategies. Here are some things I do to help me succeed at work. If you face similar challenges, these strategies might help you, too.

1. I start my day off on the right foot.  

I usually arrive to work at around 7:45 a.m. — and typically I’m the first one in. I love having the building to myself for a bit because I get overwhelmed when there are so many people bustling around. Some space at the start of the day can mean the difference between being having a stressful day and a productive one.

2. I organize my work in a way that works for me. 

I check my emails regularly and organize my tasks using a series of spreadsheets. I have to be organized because I can’t hold information in my memory for long. I have an enormous, color-coded spreadsheet for everything I do. I think my colleagues find me a little amusing with my elaborate, multi-colored Excel documents, but I know it’s a fond sort of amusement, not a hostile one, so I don’t mind.

3. I connect with my co-workers, even if it means simply saying, “Good morning.”

After 8:30 a.m. my colleagues start arriving, one by one. I say good morning – small talk I’ve learned after nine years of professional employment. I find that being friendly, helpful and kind is a great strategy for someone like me who can come across as a little odd. I imagine it means my colleagues and managers find it easier to like me. A nice person with autism and a mental illness is more likely to be seen as endearingly eccentric rather than the more hostile label a grouchy or angry person with my issues might attract.

4. I take a breath and think before jumping to conclusions. 

One day, on my way to buy lunch, I passed my general manager’s office where she was sitting with my director, doors closed. They both looked at me as I walked by. Because I couldn’t read the expressions on their faces, I started to panic – surely I had done something terrible and they were discussing drastic action that needed to be taken. How much savings did I have if I got fired? I had to resist the urge to knock on the door and apologize for everything I might have done to cause offense. I was fairly certain I hadn’t done anything terrible, but the paranoia runs deep.

I stopped, took a deep breath and reminded myself this is a frequent occurrence; my poor behavior has never been a reason for closed-door discussions between my managers. It was just my brain making two plus two equal 467.

5. I take a minute each day to recognize my accomplishments. 

As I eat my lunch, I like to reflect on the time this sort of anxiety and paranoia meant I was unable to work at all. My journey to employment took seven years. I had setbacks, one resulting in hospitalization for psychosis brought on by extreme anxiety during a dishwashing job. I was determined, though, and never gave up on my dream of employment. In order to achieve the apparently impossible task of getting to where I am now, I built my confidence through gradual exposure to different employment situations. I got to the point where I could work full-time and grasped the first opportunity that presented itself to me. I have been in my current job since 2007, and I’m proud of my achievement.

6. At the end of the day, I relax. 

At the end of the day, I take the bus home. After unlocking my front door I’m greeted by my big, beautiful black cat. Mr. Kitty is truly the best thing in my world, and a great stress-relief mechanism. I’m always tired when I get home from work — physically and emotionally — and having a black furry friend to give me cuddles helps me to unwind from the challenges of the day. I love my work, but like many worthwhile things, it can be difficult.

Follow this journey on Jeanette’s website.

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To My Loved Ones Tagging Me in Stories About People With Disabilities

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A few months ago, a story did the rounds about a boy with cerebral palsy completing a triathlon. What a wonderful achievement for that boy to complete such an intensely physical feat seemingly against the odds.  But with the sharing of that video came the onslaught of beautiful, well-meaning friends. Tagging me in that photo. Posting the video on my Facebook wall. Sending it to me in a private message.   

There was probably a time when seeing such a video may have given me hope, that the possibilities for my own child with cerebral palsy were infinite. But now, a few years down the track, we’re comfortable with our child’s diagnosis, and we know he will be able to reach his full potential, whatever that may be.

Who gets to decide what their full potential is, though?   

Picture this. You’ve just bought your 5-year-old a new bike. Suddenly 10 friends tag you in videos of a 5-year-old doing amazing BMX stunts. If that 5-year-old can do it, then yours can too, right? After all, they’re both 5-year-olds with bikes.

What if you posted a video of your toddler pointing out pictures in a book, and then a bunch of friends sent you videos of children doing baby reading programs and reading actual words at 18 months old? Your baby could do that, too!   

Or what about a video of a child with red hair who’s an amazing singer. Your child has red hair too, so they could be just like this kid!

How would you feel? What if your 5-year-old has no interest in BMX and just wants to ride carefully along the footpath outside your house? What if your toddler is more interested in banging on pots and pans, and that’s completely OK with you? What if your redhead hates music?

Imagine if friends started tagging you in posts like “30-year-old mother runs marathon.” Well, you’re a 30-year-old mother, aren’t you? You could totally go and run a marathon if she did! Or what if you’re Asian, and all your friends tagged you in a post every time an Asian person was mentioned? Because all Asian people are the same, right? No, they aren’t. And neither are people with disabilities.

All children are individuals. Not every 5-year-old will want to do BMX, and not every red-haired child will like singing. This includes children with cerebral palsy. They may have something in common with others by sharing a diagnosis, but they are still individuals with unique interests, and unique strengths and weaknesses like any other child. I know you’re trying to be encouraging when you share those stories with me. But before the boy who did the triathlon, there was the boy who ran a race at school, and his entire class went and ran beside him. Or you saw a child on a current affairs program with cerebral palsy. These children are not my child, and may in fact have little in common with my child.

There is a huge range when it comes to how cerebral palsy can affect a person. Just because one child with cerebral palsy can do something, it doesn’t automatically mean another child can. Nor does it mean they will have any interest in doing so, because just like not all able-bodied people are interested in doing triathlons, neither are all people with cerebral palsy.

It just doesn’t really make sense. And it doesn’t just happen to parents of children with cerebral palsy. I believe other parents of children with disabilities experience this, too. We parents may choose to share videos or photos of children who share our child’s diagnosis from time to time to help raise awareness or because they have touched us in some way. But we don’t always need all our friends sharing them back. We are aware of our child’s condition, and we love our child very much, and we will encourage them to reach for the stars (or whatever else they want to reach for!) because we believe in them.

We know you mean well, but I promise you — if something amazing has happened in the world of cerebral palsy, I’ll know about it before you will. So for now, please look past my child’s diagnosis. See who he really is and what he’s interested in. Don’t lump him in a box with others just because he shares a similar characteristic. And I won’t do it to you or your children either.

The Mighty is asking the following: What’s one thing you wish you could tell your loved ones about your experience with disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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