I totally cheated at nap time today. I snuggled Brandon in his bed until he feel asleep. Will I pay for it tomorrow? Possibly. He may decide that he doesn’t want to take a nap because he wants Mommy to lie with him again. But I have to trust my instincts, and mine told me it was okay to bend the rules today.

Brandon was making a lot of noise in his room. I checked the nanny cam and he was lying by the door. He only sleeps at nap time about 50 percent of the time, but he does stay in bed. Before going in to lay him back in bed, I waited a couple minutes to see what he was going to do. He went back to his bed, and just sat there staring straight ahead.

Something just didn’t seem right. I can’t really explain it, but my instincts were telling me that he wasn’t just being defiant. I opened the door and he ran up to me, jumped in my arms, and buried his head in my neck. Brandon is a very affectionate child, and does like to be held, so that part wasn’t weird. But it was weird that he was so quick to need my affection when I opened the door. Again, this is hard to explain… I just knew something wasn’t quite right — a mother’s intuition.

My main strategy for getting Brandon to sleep in his big boy bed is to be consistent. As is I said in my post about this, I am not perfect. I cheated. I laid down in that teeny tiny toddler bed with him and let him lie on my shoulder. He was very still. After a few moments, it clicked. Our neighbors are having work done in their backyard. There’s a lot of weird constructions sounds happening out there. It’s a small project. It’s not very loud, but you can hear it. He fell asleep in five minutes… if that.

He was tired, and wanted to sleep, but something about the sounds bothered him. I don’t know if they made him nervous, or just annoyed him.

Can you imagine being 3 and not being able to communicate something like this to your mommy? He just expected me to lay him back in his bed without saying a word. It breaks my heart to think about this.

Now he is napping soundly in his bed. It was one of those times that I had to break my own rule in order make this through this autism journey. I’m glad I did. I know this doesn’t seem like a huge deal to the average parent. So what… I snuggled my son to sleep; but any autism parent can tell you that breaking consistency with something like bedtime can throw you off for weeks.

Oh well. We’ll just have to see what happens.

All parents can tell you this though: Sometimes you just have to go with your gut and do the best you can!

This post originally appeared on Ramblings of a Special Mom.

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When a parent learns her child has special needs of some kind — whether they’re brought on by illness, genetics, or an accident at birth — many times she is overcome with a sense of dread and loss. It’s almost as if she is mourning a death of sorts, and in reality, she is: the death of what she had anticipated for her child.

But after a while, that sense of dread turns into one of — dare I say it? — happiness. Happiness that her child has proven the doctors wrong. Happiness that her child continues to grow and flourish despite his challenges. And happiness that she gets to be the one to witness his strength and perseverance.


Though it may seem like an odd declaration to make, sometimes I am actually glad my son has special needs. And here are seven reasons why.

  1. He’s stronger than the average Joe. My typical sons are strong in their own ways, of course. But my son with cerebral palsy and hemiparesis from a stroke in utero? He’s strong in a special kind of way — a way that declares, “I’ve straddled the fine line between life and death, and I’ve fallen on the side of life in spite of every odd stacked against me.”

  2. He knows that failure is a stepping stone toward success. Kids today expect success on the first try. Sadly, so do many of their parents. The problem with this expectation is that most people do not succeed every time they do something. Most people fail, learn from their experiences, and put that knowledge to use the next time around. My son has his fair share of failures to choose from. Why is this good? He’s turned most of them into victories. And that he’s already been schooled in this fact of life puts him ahead of many who haven’t.

  3. He has taught us the true meaning of patience. Having patience when raising children is a must, however difficult it can be to come by on occasion. But few parents actually know the true meaning of patience until they have no choice but to employ it with a child who has special circumstances. I can’t count how many times I have been equally as frustrated as my son — if not more so — at his inability to do something. And watching him push through his frustrations, many times as a result of our encouragement, has given us the patience we need to have with all our children, not just our child with special needs.

  4. Reaching milestones is that much sweeter. First-time parents are notorious milestone watchers. They can’t wait until their children master the next skill and then quickly begin anticipating the one to follow. When a child’s mastery of certain milestones is uncertain, however, it is doubly satisfying when they do eventually reach them — and it is something we have learned to savor with all our children.

  5. He is expert at things for which other kids his age are novice. When you spend most of your life at physical and occupational therapy, you become pretty good at doing things like standing upright on a balance board while clapping your hands and climbing dangerous playground equipment without falling. Because our son has had to work extra hard to acquire these skills, he’s well ahead of his peers in some regards. We’re far less nervous that he may get hurt doing these activities. And seeing him achieve these goals makes that uncertainty we felt about his future dissipate.

  6. He has taught us what it means to be thankful. It’s easy to go through life expecting everything to work out as it should. When it doesn’t, or when tragedy strikes, it is crushing, to say the least. We now know what it truly means to count our blessings. Each day our son navigates his challenges successfully, and each day we get to spend in the company of one another, is a good day, regardless of what might have gone wrong during it.

  7. He has brought us closer together. Many families are close. Ours is even closer now that we’ve been through some of the most trying times of our lives and now that we’ve learned to depend on each other to get through those that remain. And that he has such a strong network of people to help him is definitely important.

If I could will away my son’s health concerns and difficulties, I most certainly would. I don’t wish for him to have added challenges in this already difficult thing called life. But that’s not reality. The reality is that my son has special needs and a lifetime of struggles ahead. Instead of wallowing in self-pity and despair, we’re choosing to look at the upside of things.

And from where I’m standing, the upside looks pretty bright.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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.

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If you are in a position to provide guidance to a person with autism, please hear my story. Please learn from the mistakes my teachers made.

The year was 2001. I had a very strong interest in malls, which still continues to this day. At the age of 10, I was writing the names of malls instead of my own name on assignments. One time, the whole class was working on a project involving illustrating books. Naturally, my version of the project was centered around malls. I became so engrossed in the project one day, I stayed behind in the classroom when I was supposed to leave with the other students to attend another class.

I believe that these issues were the reason my teachers decided to ban my special interests from the classroom. They removed my artwork from the wall because it involved the names of malls. I was not allowed to mention my special interests in the school building, lest I have to write 10 times that I would not do so. It felt like censorship. One time, I let a “Lloyd Center” slip out, and I had to write ten times that I would not say it again. I called this rule the “No-Mentioning-Malls Rule.” And I loathed it so much.

Schoolgirl rising her hand at geography lesson
Photo source: Thinkstock Images

During the month and a half that the rule was in effect, I dreaded going to school. This was especially unfortunate, because prior to this, I actually enjoyed going to school. Children who enjoy school as much as I did are a rarity. I remember crying myself to sleep at night because of the rule. I can remember being worried about the welfare of my favorite malls the morning after the 2001 Nisqually earthquake. The rule complicated matters when I wanted to talk to someone about my fears. Fortunately, the teacher’s aide I was talking to allowed me to momentarily discuss the malls with her.

I worked with a friend to develop a new language to get around the rule. I named the language “Clairesian,” after the friend’s nickname, which itself was derived from the Claire’s accessory store commonly found in malls. We came up with new words to refer to malls. For example, “Lloyd Center” was referred to as “Scwanza,” and Lancaster Mall was “Magekilanzo.” Using this system, I was successful in talking about malls without getting caught.

The rule was lifted by April 2001, and I rejoiced. Unfortunately, it returned in October 2001 during my sixth grade year. At this point, I began using a system of initials to circumvent the rule. For example, mall names like “Boise Towne Square” and “Westlake Center” would respectively become “BTSe” and “WCr” under this system. I remember a story the whole class had to read. It was about a girl who lost her brother. He had been a source of calm and happiness for her. Her father would not allow her to talk about him after he died. I have never related so much to a fictional character as I did with this story.

For the next 11 years, I struggled to forgive my teachers for making this rule. I would write my own songs and rewrite existing songs to express how I felt. Resolution came when I confronted my fifth grade teacher about the rule. She thanked me for sharing my point of view and told me that it was a valuable lesson for her to learn. In an unusual twist of irony, I learned she was blessed with a daughter who has autism. Today, we are good friends and I have met her and her daughters face-to-face a couple of times.

I forgive my teachers, but I will never forget the rule. It would be a disservice to autistic people everywhere to pretend it didn’t happen. The lesson I have taken from my experiences is this: People with autism are inseparable from their interests. Correcting improper behavior (such as me skipping a class or not writing my actual name on my assignments) is one thing. Oppression of special interests is a whole different story. It is a line that is never to be crossed. As a result of the rule, I have learned to stay true to myself and what I love in spite of such wrongdoing.

I hope to use my story as a warning to those with an autistic person in their care. I do not want anyone to have to deal with a “No-Mentioning-Malls Rule” like I did. Special interests bring comfort, joy and growth. My myriad interests have inspired many improvements in my life, such as losing nearly 70 pounds to fit roller coasters, and getting my driver’s license so I could visit my favorite cities, bridges and theme parks. I have considered careers in civil engineering and computer repair.

Special interests are vital to the well-being of autistic people like me. Do not oppress our interests.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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.

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Marvel Comics’ “Daredevil” is about a blind superhero on a mission to rid his city of crime. Although a tragic accident left Matt Murdock (Charlie Cox) unable to see, his visual impairment does not stop Daredevil from working as a lawyer by day and superhero by night.

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This Netflix original series released its second season on April 10. The gritty, action-packed season shows how Murdock succeeds despite his disability—he is a role model for both visually impaired and sighted viewers. Until recently, the show was deemed inaccessible for blind viewers because it lacks an audio description track.

After pressure from “Daredevil” fans, Netflix announced that they will add audio description tracks in addition to close captioning to the series, making the blind superhero’s saga accessible to visually impaired viewers.

According to Netflix’s blog, “Audio description is a narration track that describes what is happening on-screen, including physical actions, facial expressions, costumes, settings and scene changes. Customers can choose audio narration just like choosing the soundtrack in a different language.” Shows like “House of Cards,” “Orange Is the New Black,” “Unbreakable Kimmy Schmidt” and “Marco Polo” will get audio narration tracks within the next few weeks. Netflix plans to make all of its original shows accessible in the near future.

This increased accessibility is a big step toward making shows and movies more enjoyable to viewers.

Watch the trailer for “Daredevil”:

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“How many doors will suddenly close as we go down the hall today?”

“How many stares will we get along the way?”

“What if he stops to squeal, make his loud noises or stomp his feet so forcefully every few steps?”

“Please let us make it out of the building today without any hurtful incidents.”

Our son’s Comprehensive Development Classroom was at the very end of what I was convinced was the longest hallway in any school. Despite my son’s cerebral palsy and autism, we felt it was important for his developing motor skills for my wife to hold onto him and allow him to walk down that hall to and from his classroom every day, with her assistance.

Some days it was absolutely agonizing.

Some days it was arduous.

Some days it was heartbreaking.

In our household, autism seems to introduce itself at the worst possible moments.

While at the drive-in window.

While at a restaurant.

While walking down the hallway from the school’s entrance to my son’s classroom.

My wife would count the number of teachers who suddenly closed their own classroom doors shut as she and my son slowly made the trek down the hallway. She could feel the stares, the glares, and the fear in her own heart every day. Some days, fear would slip into the car and ride along like a passenger on the drive to school, whispering in her ear the entire time.

She wished more people understood. She wished more people would take the time to learn and understand what was happening.

My son was making happy noises. He was expressing his excitement, his joy and his genuine pleasure when he made those sounds. They were the only way he could express himself.

At the end of each day, when he would see his mother open the door to the classroom and call his name, he would squeal with delight. He would gingerly raise his arms, crippled by cerebral palsy, and hug her neck. As she lifted him up into her arms, he would kiss her cheek over and over.

Mother and son with a bond that defied any fear, any pre-dispositions, any attempt by the world to undermine it.

I call it his “happy dance.”

Beth is one of those teachers whose classroom my wife and son walked by with dread for so many years. She heard my son’s loud noises, and felt his yelps echoing off the hallway’s walls. She listened to his feet stomping every few feet.

But instead of closing her classroom door, she opened her classroom door.

This is what she told my wife.

“Once I learned that he was squealing when he heard your voice, it just made my day to hear him. He loves you so much and he is so blessed to be yours and he knows it! I had to open my door just so I could hear it.”

With eyes wide open, and her heart then wide with love, she opened her door to grace and understanding.

As parents of children with special needs, we have been given gifts. Too often we try to hide those gifts. Too often we make excuses or try to explain ourselves. We become defensive or defeated.

My son’s “happy dance” is an example of how that even though our pain runs so deep as special-needs parents, our purpose runs even deeper. His expressions are a gateway to grace and understanding.


We have a choice. Our circumstances do not define us. We can choose instead to be defined by the way we respond to our circumstances. When we rise above our circumstances with grace, dignity, and pride, our sojourn impacts, inspires, and teaches others around us.

We can choose to hide behind closed doors, closed hearts, and closed minds. Or we can choose to open the doors and proudly display our gift to the world.

Sometimes you may need to unwrap your gift right in the middle of the hallway.

This post originally appeared on Not Alone.

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Sybille Paulsen, an artist in Berlin, is creating art out of loss.

Women about to undergo chemotherapy leave their hair to Paulsen, who then transforms it into intricate and sentimental jewelry as a part of her project called Tangible Truths.


Each piece is handmade and can take days or even weeks to complete, according to Paulsen’s website. The jewelry helps women cope with the loss of their hair and the unique pieces invite others to ask questions and engage the individual about their story.

Each woman is touched differently by the sickness and its treatment,” Paulsen wrote on her website. “Not only the person concerned but also the people around them pass through a transformation in this period. Her partner, her family and friends experience her sickness in a personal manner as well. The artifacts that I create with their hair mark this transformation.”


The artist’s inspiration for the project was twofold. Her fascination with unusual materials led her to use hair in her art, but it was when someone close to her fell ill that the conceptual foundation of the project was framed.

“It touched me very deeply,”Paulsen told The Mighty in an email. “Talking about it, I realized I was not alone with my feelings and thus I looked for a symbolic way to accompany the patient and his friends and family during his difficult phase.”


In addition to a piece for the person undergoing treatment, Paulsen has also made braided wristbands and necklaces for family members and close friends. These pieces function as a symbol of connectedness and help bind everyone together during a difficult time.

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Via Instagram

“Although it is mostly out of my control how my work is read by the observer, I can say that my intention is to create visible reminders and anchors of the love we experience during such difficult times,” Paulsen told The Mighty. “And this love encourages us to go on.”


Paulsen says that reactions to her work have been positive, especially among patients and caregivers. Some people are initially put off by the use of hair as a material, but when they see the work and touch it they open up to the idea.


What Sybille created touched me really deeply,”Paulsen’s first client, Mary Beth, wrote on her website. “Her work touched not only me but also those close to me here in Berlin who have seen it or seen the pictures. One person close to me even teared up because the necklace still looked like my hair and was a reminder of what it had been… I love the idea of helping create beauty out of what for many of us is a ugly process: chemotherapy.”


To commission a piece from Paulsen, visit this page. To see more of her work, follow her on Instagram or Facebook.

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We face disability, disease and mental illness together.