To the Special Needs Mom I Met on the First Day of Kindergarten

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Dear New Kindergarten Mom,

Today was the first day of school.

I’m not your son’s teacher, but I work here at your son’s school.

The hallways were packed today, crowded with students who were eager to find their classrooms, teachers and friends.

And, through the crowds, I spotted you.

I saw you walking slowly down the hallway towards the kindergarten classes.

I saw the way your little boy was clinging to your hand with a brand new backpack looming huge and heavy on his tiny little shoulders.

You approached me to find your son’s teacher. I knelt down next to your little guy and asked him for his name. I saw how he buried his head into your side and refused to answer me. Or perhaps he couldn’t answer. I couldn’t tell, but either way, I smiled at you to let you know it didn’t bother me and to let you know he would be fine.

This is my 13th first day of school as an educator.

Six years as a classroom teacher.

Seven years as a literacy coach.   

The fifth-grade students from my first year of teaching have graduated from high school. Some have children of their own.

I have seen many first days of school come and go.

But this year is different for me.

My heart tugs for your son in a way that it never has before. I’ve always loved and cared for the children who walk through these school doors, but today I feel deep empathy for you and for your son. Because less than an hour before you walked through these doors, I was that mom, dropping off my own little boy for his first day of kindergarten at a different school just a few minutes down the road.

And so, for the first time in 13 years, I asked you a question I never thought to ask before. I asked you, “How’s it going, Mom?”

Because, for the first time in 13 years, I really saw the worry on your face.

I saw the internal struggle that waged inside you, between holding your child safe and close beside you and letting him go off into the big, scary world for the first time. You and I both knew what had to happen today. We knew you had to let go.

And so you took a deep, shaky breath. You spoke to me of your concerns for your child. You told me that he has difficulty communicating with others. You told me he sometimes has trouble sitting still, transitioning from place to place, and, most of all, of his shy and reserved nature. You worry about his ability to convey his needs to an adult and to reach out and make friends. As I assured you of the wonderful teachers and programs available for your son at the school, I saw your shoulders relax a bit. I know how important his care is to you.

I collected your information on my clipboard for his teacher’s class. I made sure we had your direct phone number. I checked he had a bracelet on his backpack that indicated how he was getting home at the end of the day. You told me he was going to ride the bus by himself for the first time. I could feel the unspoken worry within that statement. I imagined how my little boy would do if he had to navigate on a bus this afternoon by himself.

And so I made you a promise.

I promised you I would check on your boy during the day.

I promised you I would find him at dismissal and make sure he got on the bus.

I promised you this because I knew you couldn’t do it yourself. I hoped you would be able to relax knowing there was at least one adult at school today who was watching out for your little guy, a child who required extra support.

I promised you this because while I wouldn’t be able to be there for my own son at his school, I could be there for yours.

I promised you this because there were those at my son’s school who had already made the same promise to me.

I want to tell you, Momma, that I kept my promise to you today.

Heather Zink the Mighty.2-001

I checked on your little guy several times. I peeked on his class while his teacher was reading a book out loud. It’s called “The Kissing Hand,” and it’s about the love a mother has for her son. In the story, the mother kisses her child’s hand on the first day of school, and she tells him the kiss will stay with him all through the day. And, even though she isn’t there with him while he is at school, her love will be with him always. All the children were gathered around the teacher on the carpet, and your little guy sat up close to her, right by her feet. He was gazing out the window as her rhythmic voice flowed through the quiet room, but his teacher didn’t mind that he didn’t look at her with rapt attention like all the other children. She and I both knew he was listening.

I found him in the cafeteria at lunch. I helped his little hands to reach the tray. I took extra time to explain his meal choices to him. And, as his classmates started jostling him in line because he was taking too long, he started to melt down. I gently guided him to a quiet corner. I taught him how to breathe in through his nose like he was smelling a flower and out like he was blowing a candle. When he was calm, he told me that he missed you. Then we walked through the now quiet lunch line together at his own pace. I found him a seat at a table next to a friendly looking little boy.   

The child looked over and asked, “Why is he crying?”

“He’s sad because he’s thinking about his mommy,” I told him.

“Don’t worry,” the friend told your son. “Everyone gets sad sometimes. I miss my mommy, too.”

At the end of the school day, I found your child once again in the hallway. I saw his anxiety growing as the masses of children started congregating around him. I took him by the hand and guided him to the spot where he would wait for his bus. I showed him how to find bus sign with the color that matched the color on the band of his backpack. I made sure he walked up those steps onto that yellow bus and marveled at how small he was. I swear they get smaller every year. I made sure a caring fifth-grade girl who was also on his bus would watch out for him and make sure he got off on the right stop where you would be waiting.

After all the children had gotten into their buses and cars and the hallways were once again quiet, I made my way back to my office. I checked my phone and saw I had a picture message waiting in my inbox. It was from a colleague who works at my son’s school, who also happens to be the mom of my son’s best friend. I opened the attachment to see a picture of my son, Ben, and his friend, smiling ear to ear as they ate their lunch in the cafeteria.

So I say this to you, kindergarten Momma. It’s hard to let go of our little guys, especially knowing the extra challenges they face, but try not to worry too much. Someone is always there, watching out for him. My son once said he’s strong enough to be in kindergarten. And so is yours. This year, he will learn. He will grow. He will thrive.

Warmly,

A teacher at your son’s school

Follow this journey on Changed for Good Autism.

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5 Things I’d Like to Remind the Team Trying to Help My Son With Special Needs

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I don’t think you’ve met one another, but you all play a big part in the development and well-being of my son. All of you play a different role and help us in many ways.

You’re a group of experts who I never thought I would need to know during my pregnancy. The average child doesn’t need this many doctors to stay well or therapists to learn how to say words or lick a lollipop.

My son was born different. I get it. He’s unique. It really, really upset me when you said this will be a “learning opportunity” for you. It makes me feel like my son is a lab rat. I don’t mean to take it personally, but the excitement you have at times makes me uncomfortable. Maybe it’s because I don’t know your intention, or perhaps it’s because I worry you’re just looking at my son like he’s some kind of experiment. I’m sure you have all the best intentions. But there are five things I would like to remind you when dealing with my son and me.

1. My son is more than a percentage on a chart or a number on a test.

He falls below in nearly every category and being constantly reminded how low we are does none of us any good. I would urge you to stop looking at the numbers. I get that my son falls in the less-than-1-percent rank for expressive speech, 1 percent for gross motor and ranked poor in fine motor skills. I know he’s only ranked 4 percent for his height, and trust me when I say this, I’m well aware that he’s skinny. I know the dietician you brought in was only to help us, but I can’t help but feel like a failure every single time you bring out these numbers. I have an idea, though, that can help all of us. Let’s just stop looking at the charts and numbers and just see how Von compares to Von. He’s growing and gaining weight. He’s learning new skills daily. He doesn’t learn the same as neurotypical children, but that’s OK! He’s not neurotypical so I would appreciate if we would all just stop trying to put my little-square-pegged boy into your round hole charts.

2.  We’re really tired.

Sometimes it’s hard for my son and I to implement all the strategies you want us to do to help him succeed. Every single week, you give us endless amounts of homework we need to do to teach him to speak, eat, walk up stairs, run, jump, hop or even to just socialize. I get it. You’re all enthusiastic and want him to thrive. We have therapy appointments daily, and there’s no way we can fit all of this in and still enjoy being a parent and a child. We’re not in a hurry to develop. We are OK developing at the speed of Von. Please don’t be disappointed when we haven’t done our flash cards, brushing activities or lollipop exercises. Sometimes we just want to be a mom and a child.

3. We want to thank you for being compassionate and understanding.

We know your job is hard, and you don’t have all the answers for us. We know we may never have a prognosis for what life will look like for Von, and we appreciate that you will never stop helping us search. Thank you for returning our emails at 9 p.m. or calling when you’re off your rounds at 8:30 p.m. Thank you for sending us notes to say you appreciate how hard we work to implement his care. Thank you for recognizing how difficult this is for us, and thank you for being our advocates for better care, better medication and better therapy. Von and other kids like him would fall between the cracks without your constant push. We know how hard you work and how parents can yell and scream, so we know it can’t be easy.

Katie Paulson the mighty.2-001

4. I’m sorry I’ve yelled at you.

I’ve cried and told you that you were worthless. I’ve screamed about how I don’t understand why you can’t fix my son. There have been times my mouth has gotten the better of me because I’m so incredibly scared. I hate that we don’t have a crystal ball to predict his future. Not knowing if he will ever live life independently terrifies me. Knowing he may have been born sterile is heart breaking, and there are times when I reach my limit and my fuse blows. I’m sorry if you’re on the other end of my frustration and anger. Please know I’m not angry at you, but I’m sad and frustrated with a situation that feels absolutely hopeless at times. I’m sorry I’ve been less than perfect, and I hope you know I appreciate what you do.

5. A 30- to 60-minute appointment is only a fraction of time of our lives.

We have so much to celebrate with you, and we wish our appointments could be about our accomplishments instead of our challenges. We know it’s just simple things. Von just learned to lick. He just started to put his hands in his mouth at almost 3 years old. He’s finally calling me “Momma” and saying “no” consistently. He isn’t scared of strangers or situations like he had been before we started this journey. You’re all helping us get to where we need to go.

I need all of you to be a part of the celebration. So please find the time during every appointment to celebrate our small victories. We’re moving mountains daily, and you’re helping us get there. Cheers to that!

Thanks for being with us on this journey. We know some of you will leave us, but we want to know we won’t forget your commitment to helping us.  Thank you for being “the team” that helps us thrive.

Sincerely,

Katie (a mother to a tiny super hero)

Follow this journey on Von’s Super Hero Facebook page.

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Watch These 2 Girls Who Use Wheelchairs Dance Their Hearts Out

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These girls prove you don’t need the use of your legs to get your groove on.

A video posted to Facebook last month shows two young girls, both in wheelchairs, dancing their hearts out to Silentó’s summer hit, “Watch Me (Whip/Nae Nae).” The video has since been shared thousands of times all over the internet.

The girls are named Brooklyn and Mayli and they are dancers with Ayita Dance in Fort Worth, Texas, which is a dance class for kids in wheelchairs started by Mayli’s mother, according to their GoFundMe Page. Mayli loves to dance so much that her mother decided to start the class to give her and other girls like her a place to express themselves.

 

Mayli was born spina bifida and has been partially paralyzed her whole life, but that has never stopped her from dancing.

Mayli is a dancer, if there is a beat she’s moving to it,” Mayli’s mother wrote on her GoFundMe page. “It doesn’t matter the genre of music,  she loves it all.”

"By being yourself you put something WONDERFUL in the world that was not there before" -Edwin Elliot#Ayita #wheelyawesome #wheelfriends #wheelchairdance #spinabifida #spinabeautiful

Posted by Ayita Wheelchair Dance on Saturday, August 1, 2015

 

Check out the video of Brooklyn and Mayli dancing below: 

Two of our dancers, Brooklyn and Mayli, doing the whip nea nea. #watchmedance #watchmewhip #wheelchairdance #dance #kitchendancesession

Posted by Ayita Wheelchair Dance on Monday, July 6, 2015

Visit the Ayita Dance Facebook page for more information. 

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What the Most Severe Form of Spina Bifida Looks Like to Me

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I’m just going to say it: Finding out your child has spina bifida (SB) can be confusing, painful and scary.

It’s not because people with spina bifida are scary (they aren’t, unless it’s Halloween and maybe they’re in a goblin costume). And it’s not because the diagnosis means a life of constant pain and suffering (it doesn’t, unless you ask my 3-year-old to tell you about how I won’t let him drive the car). No, it can be scary because when you find out your child has SB, you probably don’t really know what that means, but you know it’s not what you signed up for.

To make matters worse, when you find out that your child has spina bifida, your doctor will start plowing through a list of words you’ve never heard before like hydrocephalus, meninges and chiari. Words they’ll rattle off while you lie there, belly covered in goo, trying to remember how to breathe. You may feel like you’re listening to a lecture on metaphysics or rocket science. You may zone out completely because all you can think is, “Nope. No thank you. Not it. Nope.” If you’re like me, you may stare at the wall and use all of your energy to focus on not tossing your cookies.

Then your doctor might say some words you actually have heard before. That’s a relief, right? Wrong. Because one of those words is going to freak you the heck out.

That word is “severe.”

As in “Your baby has a severe form of spina bifida.”

Or “Your baby has the most severe type of spina bifida.”

Ouch. I know. It’s awful. I’ve been there and I get it. Severe is, like, worse than bad. Severe is bad intensified. Severe is bad hyped up on Red Bull and steroids and whatever was in the bottle labeled “Drink Me” that made Alice 10 stories high. Severe is really scary stuff.

So let’s talk about severe.

There are actually different types of spina bifida. One type called spina bifida occulta is so mild that about “15 percent of healthy people have it and do not know it,” according to the Spina Bifida Association. And then there’s the severe type: myelomeningocele.

If you’ve just found out that your unborn baby has spina bifida, it might be the severe type.

But what does it look like?

To begin, here’s what it doesn’t look like:

mary.1-001

That’s a relief. Yikes.

Mustaches aside, it also might not look like any of these:

These are common misconceptions about people born with myelomeningocele. Unfortunately, they are misconceptions that some doctors who have little experience with SB might still believe.

If a doctor tells you any of these things — that your child will have severe brain damage, will have no quality of life or might not survive birth, etc. — he or she could be wrong. I’m serious. Your doctor might be wrong. Not because they’re bad or because they’re liars, but because they honestly might not know any better or are ignorant about SB.

But you don’t have to be.

Want to know what the most severe form of spina bifida looks like to me?

It looks like this:

mary.2-001

mary.3-001

mary.4-001

mary.5-001

mary.6-001

mary.7-001

mary.8-001

mary.9-001

All of these people have myelomeningocele, the most severe form of spina bifida. All of their mothers sat where you are sitting today. Many of them were told their child would have no quality of life, would live with severe brain damage or might not survive infancy.

It would be dishonest to say people with this type of spina bifida don’t face physical and societal challenges. They have medical needs that are outside the norm. They will have surgeries. They will probably need leg braces or a wheelchair. It’s not always easy. But you need to know the majority of babies with the most severe type of spina bifida are born healthy and strong (my son had the Apgar score of a tiny Olympian). They grow up. They lead happy lives. They go to school. They can have fulfilling careers. Their lives have value.

Everyone’s life has value.

Don’t let severe scare you away.

Follow this journey on What Do You Do, Dear?

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To the Doctor Who Encouraged Me to Open Up About My Mental Illness

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Dear Doctor,

You were my psychiatrist and advocate for four years. I told you my symptoms, I told you my struggles and you monitored my liver, my sugar levels, my heart and medication.

The last time I saw you, before I called your office and they said you were gone, you told me to tell someone, anyone, about my mental illness.

I had been living in the closet for over 20 years. My husband and I were isolated from friends, family, peers and acquaintances. We lived in our own bubble and you knew we were suffering.

I want you to know I told someone. At first it was a friend — one friend — and then I went home and wrote an essay. My husband and I posted it on our Facebook accounts. Some people left. Some people came closer. Some people were curious. Some people opened up and welcomed us in.

Every time we told our story, our world got bigger. I want you to know you were right.

There are people who open their hearts and minds to people with mental illness, even those of us who suffer from one of the most feared and misunderstood illnesses, paranoid schizophrenia.

I’ve continued to tell my story. I’ve written it again and again. One article I wrote was shared over 1300 times on social media. I’ve started a blog. I write every day about surviving schizophrenia.

People have thanked me. People have told me about their mothers, fathers, aunts, uncles, sisters, brothers and themselves.

You asked me to tell one person, and my heart, mouth and pen started working. Now, I have told thousands and I plan on telling many more.

I wish your office could tell me where you went, why you left or get a letter to you from me. But I know that’s impossible. I have this fantasy, this hope, you are one of the people who have read my words.

You may never know the results of your request, but if by chance you’re reading this I want to say you’ve changed my life. My husband and I are no longer isolated and alone. There is a whole world out there ready to receive us. Thank you for leading the way to that door. We’ve stepped inside, we’re comfortable and people are so much better than we ever imagined.

I miss you so much, and only hope my words someday reach you.

Best,

Your Former Client

Follow this journey on A Journey With You.

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29 Ways to Describe a Disability to Someone Who Doesn’t Understand It

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Describing a disability, disease or disorder to someone who doesn’t understand it can be tricky — particularly if the condition isn’t common or visible. Overly scientific descriptions aren’t usually easily understood and ignoring the topic entirely isn’t an option. So, what is a good way to describe a disability to someone who isn’t familiar with it?

To learn more about the tactics people use to describe disability, we turned to the people who do it every day. The Mighty asked our readers on Facebook to share how they describe their own or a loved one’s disability to people who don’t understand it. The responses we received were informative, creative and incredibly helpful.

Here’s what they had to say:

1. “My daughter has dyspraxia, which is poor motor planning because of slow neural transmissions. I describe her to others as being a super-computer with a dial-up modem.” — Stephanie Bruttig Brander

2. “I explained [my] cerebral palsy like this: ‘When you go out and play in the snow, come inside and can hardly move because your body is so stiff because of the cold? That’s how I am 24/7.'” — Desiree Ferguson

3. “My son has attention deficit hyperactivity disorder (ADHD). I tell folks to imagine their messiest bedroom and being told they had to keep it messy 24/7 and be productive. That’s how my son feels when people tell him he ‘just needs to be organized.'” — Amy Jones 

DM 1

4. “My son has autism. I tell people the best way to describe what my son deals with daily is to imagine being in a foreign country. You do not speak their language, they do not speak your language and you can’t communicate your needs to get help. You’re lost, hungry, thirsty, etc… How frustrated would you be? I believe this is a great visual aid for others to understand.” — Theresa Angrisano 

5. “To explain my mom’s schizophrenia, I told the children in the family that [she] had more things going on in her brain than most people. If they didn’t understand what she told them to do, then they should go to another grown-up right then. It made sure that the child didn’t disrespect [my mom] by ignoring her.” — Jean Dial-Teague

6. “We say our daughter has cerebral palsy. Then we ask the person to flex their muscles and imagine having to hold the flex position for 18 hours. When we get the normal response, ‘Oh, that’s hard and would hurt,’ we say, ‘That’s what it’s like for our daughter.'” — Deirdre McDaniel 

DM 5

7. “I explain that having systemic scleroderma is like having a vat of concrete poured into your veins, skin, and organs. Eventually everything becomes so hard to move that you are paralyzed and everything shuts down. You slowly turn into a living statue.” — Chanel White

8. “[I explain it] with truth. My son has many scars from multiple surgeries. He is 6 years old and we always discuss his health, scars and disabilities with honesty. I prefer questions rather than stares or shooing people away.” — Jenn Budd

9. “I’ve told people to imagine, ‘If your lips were superglued and you couldn’t get anything out that you were thinking about, wouldn’t that frustrate you as well?” — Jimalea Jones

DM 6

10. “For many years when people would ask what was wrong with our son, my wife and I would just say it was cerebral palsy and get it over with. It’s only been over the last year that we truly explain David’s condition of holoprosencephaly. Big words normally scare most people away, but those who truly want to learn will listen while we explain his brain developed differently than ours. We actually look forward to those questions now and the chance to educate others in our area.” — Bill Best 

11. “It’s like being blind and just when you just get to where you know the layout of a room and are comfortable with it, someone comes in and moves the furniture around. That’s the mind of a child with ADHD and cognitive disorders.” — Jeannetta Harris 

12. “You know how there are stressors in your life that make you nervous or anxious? Those situations make [my son] feel like the world is caving in and he has no control over his behavior because he is tapped out.” — Kimberly Konig Marley

13. “I have single-sided deafness of unspecified origin. My description of it? It’s like living in a wind tunnel with F-18 airplanes flying overhead 24/7.” — Donna Allgood Kuchem

DM 2

14. “My sons are both undiagnosed. They have global physical and cognitive delays and are nonverbal, but they understand way more than people assume. I usually explain to children that they are just like everyone else but their bodies work differently and they use an iPad to communicate, which most kids find very cool.” — Anna Siderakis-Karounos 

15. “I have Tourette syndrome, and when I describe my tics to people who aren’t familiar or who only know what they’ve seen in the media, I tell them having a tic is like a sneeze. You can’t always keep it in, and more often than not, if you suppress it, it will come back later with a vengeance. Most people tend to get a grasp on Tourette’s that way, because everyone sneezes and knows what that feels like.” — Lauren Elaine Childress

16. “My little brother once asked, at 3 years old, why he didn’t have crutches like me. I told him, ‘Because my legs aren’t as strong as yours, but that’s OK.’ He accepted that and had a simple, positive explanation to take forward with him.” — Tonia Says 

17. “My son has apraxia, which I explain [like this]: ‘It’s like a marble in a drain. Sometimes the water can pass, other times it gets stuck.’ His speech processing is exactly like that.” — Sherry Mitchell 

DM 4

18. “I have depression and anxiety disorders. I [explain it] like this: Depression and anxiety are teammates and I’m the opposing team. Their one and only goal is to drag me down. They make me paranoid, they make me feel useless and they steal all of my energy and motivation. However, sometimes, they go on vacation. I never know how long the vacation will last, but I get stuff done while they’re away, because I never know when they’ll come back.” — Sarah Cecilia Flanigan

19. “I had to explain [my daughter’s seizures] to her 1st grade class after she had one at school. I explained like this: ‘[My daughter] has something special about her. Her brain has seizures, or, like her brother calls it, ‘her shakes.’ She is what we call epileptic. I know it’s scary, but when she has her shakes, it’s important to stay calm and go get an adult so they can help her. If you can’t find an adult, get her brother, he’ll know just what to do.’ Then, we began our conversation of what our siblings help us do and why being a ‘helping friend’ is so important.” — Crystal Wright

20. “This is how my daughter describes her sister with autism: ‘It’s like we all have a red power cord, and her cord is blue. She’s just wired differently, but she functions just fine.'” — Julie Preston Bean 

DM 3

21. “I tell people who ask about my son’s multiple conditions that he was in such a hurry to see the world he showed up a little early. He has some issues but he is awesome and happy and that’s what matters.” — Jessica Hirschenhofer 

22. “[Living with depression] is like treading water and never reaching land.” — Barbara Winthrop 

23. “We usually say something like, ‘[Our daughter] has Rett syndrome. It’s a rare neurological disorder caused by a genetic mutation which makes it hard for her to use her hands and legs properly. Sometimes her hands do things she doesn’t want them to do. She can’t speak, but she can hear you just fine and she is very smart!'” — Grace Fox 

24. “[I explain my son’s] Down syndrome to the kids at his school by using an example they can relate to. I came up with the concept of two bears made out of Legos that are very similar, but with one difference — an extra chromosome or an extra ‘lego-peg.'” — Ingrid Muschta 

DM 7

25. “[My adult son has] severe social anxiety, depression, obsessive compulsive disorder (OCD), Tourette syndrome and is on the autism spectrum. When he was working I explained [his anxiety] to his supervisors as follows: ‘Imagine you are terrified of spiders. When you get to work, you have to wade through a giant pit of spiders. When you get to your desk, you think of nothing other then the fact that you must pass through the pit of spiders on your way home. Once home, you obsess about the fact that you have to go back tomorrow.'” — Wanda McCallin Oleson

26. “Our son is visually impaired. He has underdeveloped retinas, nystagmus and poor vision. The way I explain his nystagmus is imagine seeing everything as if it were a flip book and the only way for the images to be clear is to hold your head in a certain position. His brain then takes those images and smooths them out. So he takes longer sometimes when concentrating on things.” — Lara Young

27. “My son’s left hand never developed properly. It’s called symbrachydactly. We tell people (kids especially) that he’s got a ‘lucky fin’ just like Nemo in ‘Finding Nemo.’ There’s nothing he can’t do; it just looks a little different.” — Jamie Brenner Ponce

DM 8

28. “I’m a paraplegic due to transverse myelitis, an autoimmune disorder that attacks the spinal cord. I relate it to a cat chewing on computer cables, damaging the insulation around the wires inside. My immune system has damaged the insulation around the nerve fibers in one particular place on my spinal cord, and without that insulation, the nerves can’t carry the signals properly.” — Elizabeth Churay Matherne

29. “I explain my son’s high functioning autism as something [that] enables him to do things most 5-year-olds can’t, like play checkers for an hour, have discussions about the civil and revolutionary wars and explain friction to his 3-year-old brother. My kid wouldn’t be the cool, inquisitive, patient child he is without his ‘disability.'” —  Rebecca Silvern Roberts

DM 9

*Some responses have been shortened and/or edited. 

How do you explain you or a loved one’s disability or disorder? Let us know in the comments below. 

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