When my son was about 5 years old, he proclaimed he was an animal psychic.

His therapists and teachers all wrote this on his evaluations prior to entering first grade: the speech language therapist, the occupational therapist, the school psychologist and the resource special education teacher. Each team member had met with him individually and documented his declaration that he could mentally talk with animals. He was adamant that he had this skill and that he was going to make this his profession. Where he got this we’re not sure, but I’m guessing my “Thank You” card should be sent to Eddie Murphy’s “Dr. Doolittle” movies. Regardless, it made for an interesting IEP meeting.

Being the open-minded autism mom that I am, I decided to try animal therapies for my son, who obviously has an animal super power. Animal telepathy.

First stop: hippotherapy.

I had researched amazing things about hippotherapy, which is movement therapy on a horse that dates back to the ancient Greeks but was not acknowledged as treatment until the 1960s as a form of physical therapy. Our private OT loved this idea and encouraged us to give it a try to aide my son’s sensory processing disorder.

Having grown up riding horses, I envisioned horse therapy being great bonding time with my son and me. Maybe this would be our thing.

We signed him up for a Saturday ride where he could get up close and personal with a horse. It was an epic fail. He was terrified and refused to go near the brown beauty, let alone mount the beast. And then there was the meltdown of the century.

Instead of wasting the pre-paid hour, I rode on a horse I nicknamed “Turbulence” because one of his legs kept giving out. Bumpiest ride ever. I thought to myself, “Maybe he could talk to the horse with the unsteady leg.”

We moved on to the next stop on our animal therapy tour.

Swimming with dolphins.

Screen Shot 2015-04-28 at 12.07.52 PM We live in Southern California, so my son was practically born in salt water. The ocean and swimming pools were a big part of our occupational therapy, so I concluded dolphin therapy was a natural progression. We planned a trip to Hawaii (where my mom lived at the time) so my autistic animal psychic could swim with the dolphins.

Again I pre-paid, confirming my child’s healing adventure with the magical fish. Then I waited with sweet anticipation for six long months.

Upon our arrival at the dolphins’ tanks, I was beyond ecstatic. My son? Not exactly enthusiastic. He refused to wear the required life vest and once again had the most massive meltdown of all meltdowns.

And so I ended up in the cold water, rubbing my hands over a lumpy dolphin. “She has tumors,” the dolphin instructor informed me.

While the dolphin was beautiful, it wasn’t exactly healing or soothing to hold onto a tumor-ridden dolphin. Had my son touched this slimy, bumpy creature, it would have been a nightmare for his tactile dysfunction.

Maybe the dolphin had warned my son telepathically.

Most parents would give up at this point, but not me. I was determined to find the perfect animal to kick off my son’s desired animal psychic career.

And so, we got a therapy dog.

A beautiful lab mix who was the sweetest thing ever to grace our lives. I bonded with her instantly, and she became an integral part of the family. However, my son was hardly interested in her at all. Over the next four years, he kind of liked her, but her unconditional love was not returned. He didn’t want to sleep with her, he didn’t want to feed her and he certainly didn’t want to walk her.

It was time for me to admit my son was not an animal psychic after all.

Once again on this journey with autism, I learned that there is no “one size fits all” for therapy. I’ve talked to people who have benefited greatly from hippotherapy and have read beautiful stories of dolphin encounters. There are therapy dogs that have changed the lives of many children with autism, but not ours.

I don’t regret trying any of the above listed therapies. In fact, we’ve had many adventures since, and each one has had a lesson. Sometimes they work, and sometimes they don’t. That’s life.

Our autism life.

With our not-animal-psychic, but perfectly fabulous son with autism.

Screen Shot 2015-04-28 at 12.07.37 PM

This post originally appeared on Peace, Autism and Love.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


I hate Target. And that sucks because I love Target. But, I’m letting myself be mad at Target today instead of the little stinky kid who asked his mom, “Is that lady a boy or a girl?”

Yes, I can find the humor in his logic. Kind of. Again, I wish I had much thicker skin, but, I just don’t and I’m experiencing the cancer emotion I’ve been waiting on — I’m mad! Super duper mad. Finally. Not at the kid (ok, a teeny tiny bit at the little munchkin), but at his mom’s response. And I’m allowed to take this frustration out on Target because I wasn’t trying to keep count, but this is the third time a kid has said something to their mom at Target about me that has made me cry. And I don’t like being mad at people, but I can handle being in a fight with Target for today.

After the question was posed, I may have stalked the store to find the mom and her three sons. Then, I may have heard her snap at her kids and realized she too was having a bad day. I may have forgiven her then because, I get it. I didn’t stop to tell her a better way to handle her son’s question. My dear friend Liz has promised me this is not the way to handle these predicaments. So, I smiled at them, made myself continue to try and look like a friendly normal mom (I was in yoga pants and a tank top while shopping for hand towels for crying out loud!) and will tell you instead what I wanted to say to her.

Dear Mom with the Son who asked really embarrassing question loudly enough that I heard,

First, I’m a mom. I’m also a former teacher and a lover of kids, so I get it. I know kids say inappropriate things and they have questions. I also realize after 14 rounds of chemo I’m looking a bit eyebrow-less, bald and ghostly. Trust me, it’s harder on me to look at this face in the mirror than it is for you to to have look at me. At least I hope.

I believe 99 percent of the time the things kids say are really funny. Your son was even a little funny today, but your response was not. Shushing him and scurrying away made a teachable situation 99 percent worse.

I know it can be hard to find the right thing to say, and perhaps it’s a bit awkward. But, our run-in had already reached the absolute height of social discomfiture. Just say something to your child that might help them to learn something. Here are some ideas.

1. Hey sweetie, I can see why you are asking. She has no hair. I will explain it to you in the car.
2. Yes, the woman has no hair. She may be taking a medication that made her lose her hair.
3. Hmmm, it looks like she is a girl. She just has really short hair.
4. I’m not sure, but the person is smiling and looks friendly.
5. Sometimes people don’t have hair because they are sick
and it grows back.

More than anything, I wish you would have just smiled at me, made eye contact and we could have shared a silent moment of motherhood. It’s hard and uncomfortable and tear-inducing at times. It seems like you were having a rough day. Three boys must be tough. I hope your day gets better.

Note to self: Don’t forget to wear earrings again.

A version of this post originally appeared here

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


There are two stories I could tell you.

One: I’m clinging to my roommate’s arm, trying to (re)learn how to walk in heels.

Two: A friend sent me a pair of shoes.


One: I wore heels, once. I was in a choir, it was a really big deal, and the high school girls had to wear character shoes. I got the lowest possible heel, and I was OK, mostly.

I liked how they sounded on the floor, so sometimes I wore them in college, or to council meetings, or when I went to Washington. I think they had maybe a half-inch heel.

I lost my character shoes in the move. Two years went by. I tore all the muscles in my left ankle, every last one, and I couldn’t go to physical therapy.

I put on a new pair of heels, and I knew instantly I didn’t remember how to do this.

Two: My life looks different now from when I was high school. I am connected now, in some pretty formal ways, to hundreds of disabled people all across the world. A couple of weeks ago, one of those people, a Facebook friend who has done a lot to show me what living with pride and joy in a disabled body looks like, posted she had somehow wound up with a pair of Mary Jane shoes that were far too big for her. Did any “crip femmes*” she knew want them?

They were a size 11. I usually only have one pair of shoes at a time, and let me tell you, finding cute shoes in your size when you are over six feet tall is not easy. I said so. She sent me a picture, I noted they had heels, we worked out the logistics.

A few days ago, they arrived. My roommate helped me open the box.


I did remember how to put them on by myself.

I am autistic. Just like the screenings warn, I walked on my toes when I was little, and until I hurt my ankle this summer, I still did. I can dance, kind of, not really. In my own way. I have a lot of trouble with conventional femininity — I wear long skirts and long hair after a religious upbringing, but I don’t have the motor skills or the patience or the social-cognitive something for most of the work required to do femme traditionally.

I can’t put on my own makeup or paint my nails. I can’t fasten any clothes a typical 6-year-old can’t. I used to be able to pin up my braids, but I lost that skill sometime last year after going too long without OT. The day you see me with my hair perfectly coiffed and my eyes carefully made up, in a coat with buttons and boots with no zippers, is the day you know I’ve either been married or placed on a Medicaid waiver.

Like a lot of disabled women hoping no one notices we’ve snuck into the professional world, I cling to the few scraps of traditional femininity I can hold on to with my teeth. My friend, another autistic woman in the workplace, calls it “femme-NOS.”

Being able to wear heels again would be a big deal.


“We’re gonna walk around the room,” my roommate says, and I nod and hang on for dear life.

“Why did you want these?” he asks.

“The gala,” I say grimly. One of these days I am going to be dressed to kill.

“OK,” he says. At the last gala, he helped ferry me from guest to guest, guiding me through the crowd and staving off meltdowns and making the loudest night of the year mildly enjoyable.

“We’ll have to practice a lot.”

One of my other friends runs a blog called CP Shoes, about disability and shoes and some other things. I know as soon as I volunteer to take the shoes I am going to want to write a thing for her. I’m writing, again, because some things worked out and I have a little more energy, a tiny bit of space for words left in my brain on the weekends.

Some of my friends and I are starting to talk, in various places and various ways, about #DressingWhileDisabled. There are a lot of stories about disability out there, and not a lot of them look like our lives.

We have to tell them ourselves. We have to tell them together.

I sit down, and there are two stories I can write.

One: I’m autistic, and there are things I have to learn and struggle with and overcome, like wearing heels.

Two: A friend sent me a pair of shoes, and on a night dedicated to celebrating disability and community and the way my brain and my body glitch at each other, I’m going to wear them.

I want to write a story about shoes and disability, about the connections the disability community makes between people who are short and people who are awkward crashing giants.

About the ways my life has gotten so much bigger.

About objects and ideas that get passed from person to person.

About the ways disabled women or “crip femmes*” or we take care of each other when no one else will.


We’re taking it one step, one story, at a time. And these are the stories I want to see.

* “Crip femme”: a term from the LGBT community for some kinds of women with disabilities.

A version of this post originally appeared on Just Stimming… 

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Many people have asked me and still ask me, “How was it growing up with a sister with special needs?” They ask questions like: “Do you feel like your parents didn’t spend a lot of time with you while you were growing up?” “Did you feel like you always had to be perfect for your parents because of all the hard things that they were going through?”

The answer is: yes and no. Let me explain.

When I was 2 years old, my sister was born. When she turned 2, her symptoms of special needs started to show. Our lives changed completely after that. You can never plan for these things to happen and when they do, you don’t know what to expect. My sister has developmental delay and slight autism. The best way I can describe her is as a 2-year-old in a 17-year-old’s body. Physically, she has no problem walking or running, but she doesn’t talk and she has no sense of danger, so she always needs one-on-one care. While I was growing up, I think that yes, most of my parents’ time was spent on my sister and her care, but I never felt that it took away from my time with them.

I would like to give advice to my fellow sibs out there and explain how having a sibling with special needs changes your life.

It’s not going to be a smooth ride; there are going to be many difficult times. You are going to go through things that most children or teens your age will never have to go through, but not for one second should you let negative thoughts take over. All these things that you will go through only make you a better, stronger and mature person.

sister with special needs the mighty

Many questions will run through your head while you are going through all these hard times, questions like: Why can’t I act like a normal teen? Why can’t I have loads of friends come by to play? Why can’t I have a conversation with my sister or brother? I want to tell you that it’s okay to question and it’s okay to feel upset, but the worst thing to do is to keep it all inside.

My biggest mistake when I was going through hard times was that I never shared my feelings with anyone. Everyone has ups and downs, and yes, not everyone is going through the same things, but if you look for answers and you don’t ask the questions first, they will stay unanswered. It doesn’t matter who you speak to — parents, friends, even if it’s one person with whom you feel the closest — it’s always best to share instead of carrying on with everything still inside.

When I feel down or I’m going through a hard time, the place that I go is my sister’s special school. You know why? Because all the girls and boys bring love and happiness to everyone around them.

Many ask if I ever wish that my sister was “normal” and if we could live a “normal” life. My answer is no. Looking back, I realized that it’s the best thing that has happened to me and it is the reason I am who I am today.

So keep your head up high and be proud that you have been blessed with such a special sibling, even with all the hard times along the way. I remember every day that despite the fact that that my sister will never live an independent life, she will also never crash the family car or fight with her siblings. She will never flunk out of school. She will never get married or divorced. She will never understand the evils of this world or understand death. She is pure happiness and I will always be grateful for having her in my life.

“Life is not about waiting for the storm to pass. It is about learning to dance in the rain.” We have not been given easy lives, but they are lives worth living. Cherish the challenges and later you will realize that it’s the challenges that have made you the person you are today.

Keep you head up and don’t forget to dance in the rain.

sister with special needs the mighty

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Today, while chatting about odds and ends and the ridiculousness that is Hollywood’s recent obsession with sick and/or terminal teens, a nursing assistant asked me a question that left me stumbling over my words. And in my drugged, delirious and exhausted state I just could not find it in my vocabulary to answer.

“What is the real ‘Red Band Society?'”

(For those of you who don’t dabble in the far-too-many poorly created scripts that have managed to make it onto television or the silver screen, you can find an explanation of the show “Red Band Society” here. Just don’t blame me for side effects: incessant eye-rolling, gagging and what-the-heck moments.)

I’ve been thinking about that question all day and decided (though still delirious, so forgive me!) to attempt to craft an answer that adequately explains my feelings on the matter. First thing. Being in the hospital is not all about freedom, fun, friends and pizza parties (which sounds to me a lot more like the description to a sixth-grade birthday celebration). It’s not where “life starts,” as the show’s previews proclaim. It’s not all clichés and sentimental, sensationalized stories of bald kids and bravery. And it’s certainly not all feel-good happy endings to cater to that warm, fuzzy place in your heart so you can rest your head easily on your pillow at night knowing all is good and right in the world.

What is it?

It’s more like crying so hard you puke and puking so hard you cry. It’s where the life you’ve always imagined for yourself stops, reality slaps you in the face, and you have no choice but to confront it face-first — whether you’re ready for it or not. One thing is for certain: You will not be ready for it. It’s those moments of loss and pain and sadness so deep and scary you never knew such depths existed or that they could ever exist within your soul. And no words or inspirational quote slapped on a pretty placard could ever come close to explaining it or fixing it. On good days, maybe your eyes and mind will focus on the kind notes from thoughtful friends and family and maybe even strangers. Their cards will help cover your walls. But on most days those walls will feel strikingly white and bare. Harsh, fluorescent overhead lights will replace sunshine, and the air will be so dry and sterile that no amount of ChapStick will keep your nose and gums from bleeding.

Oh and if you’re lucky? Maybe, just maybe, you’ll eventually get to walk through those exit doors. But your soul will forever hold a gaping wound, and all you can do is hold onto the hope that you’ll have equally as many days of joy, laughter and sunshine in your life to fill that hole back up again.

The real Red Band Society has no exclusions or mercy rule. At any moment it could be your life. So make sure you take some time to breathe and send your gratitude out to the universe for that club you’ve been spared from for yet another day.

image2 (4)

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

I spend so much of my time being angry. Not at a person, but at neutropenia. Chronic benign neutropenia, to be exact.

Doctors define it so simply. Neutropenia is when your body doesn’t produce enough neutrophils. Neutrophils are a type of white blood cell needed to fight infection.

For my 19-month-old-daughter, Willow, neutropenia means much more. It means pain. The poke of a needle twice a week. The sting of watching mommy, her protector, administer each shot. The torment of bone pain as the drugs work their magic producing neutrophils deep within her marrow. The misery of mouth ulcers, the agony of a fever or the discomfort of a skin infection when the drugs just aren’t enough.

I guess you could say neutropenia also causes me pain. It’s torture watching my littlest daughter fight such a big battle. It’s not fair. It’s just not fair.

Screen Shot 2015-04-27 at 4.29.34 PM

While antibiotics and neutrophil-boosting drugs like Neupogen help Willow fight physical infections, I’m left wondering how to treat the poison coursing through my own body — anger. It eats at me just like the bacteria eats at Willow and causes her sores.

I hate neutropenia for making me question every little blemish on my daughter’s body.

I hate neutropenia for robbing my daughter of a chance to play freely with friends for fear of germs.

I hate neutropenia for forcing me into the role of the crazy lady who carries a bottle of hand wash in her hands at all times.

I hate neutropenia for making me take on the task of administering shots of Neupogen.

I hate neutropenia for ruining too many nights of sleep.

I hate neutropenia for causing me to question every… little… thing.

Screen Shot 2015-04-27 at 4.30.13 PM

My daughter also has Down syndrome, and while I’m told the two are unrelated, Willow’s extra chromosome does play a role in how seriously her neutropenia is taken. A small pimple landed her in the hospital a few weeks ago because it got infected and gave her a fever. I foolishly thought I could help the situation with some antibacterial ointment. Her hematologist set me straight. According to him, a tiny infection can turn deadly if it enters her blood stream. That’s because when she was just a month old, Willow had some heart defects repaired. Those repair sites are supposedly magnets for infection. Gulp. Yet another reason to hate neutropenia. Dang you!

But, I’m done! I’m tired of living this way. Exhausted. And I’ve come to realize if I’m going to help my daughter through this, I need to be at maximum strength. I can’t stop neutropenia from attacking my daughter, but I can stop it from tormenting me.

Today I am taking the first step toward letting go of my anger. I’m forgiving my daughter’s attacker.

Neutropenia, you’re evil. Plain and simple. So why should I waste my time hating you? You’re not going to change. No. Instead, I’m going to accept you for what you are — an inconvenience.  Something to be conquered. And believe me, you will be conquered! For months, you’ve held my family captive. Now it’s time for us to put you where you belong — behind bars.

From this day forward, I won’t allow you to invade my constant thoughts. I won’t allow you to ruin my day. Neutropenia, I’m done being angry. I’m taking back my life in hopes of bettering my daughter’s. Sure, you may try to hurt her, but I guarantee you won’t take her life. She’ll be too busy living it. Loving it.

Goodbye, neutropenia. I’m over you. And, by the way, the key to your cell? I’m giving it to God, because I know He’ll never give it back to me.

Screen Shot 2015-04-27 at 4.29.52 PM
Why waste time hating neutropenia when you can love this?

This post originally appeared on The Mighty Willow.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.