Six weeks ago we thought our son was gone. He was here but not “here.” He didn’t smile. He needed oxygen 24/7. He could barely move his body. He rarely made a sound and didn’t want to communicate. He looked at us as if he didn’t recognize us.

Today, he smiles with his beautiful dimples, he is without oxygen during the day, he can walk again, communicate again and, most of all, he finds joy daily. Now he’s riding a horse, playing sports and enjoying his life again. This is miraculous to us for so many reasons.

We had 6 to 8 months of rages. We thought it was low blood sugar, but in reality, his gall bladder was slowly failing him. The rages somehow began to be a daily occurrence, and his intensity ramped up. His previous doctors wrote it off as hormones and autism. We knew it was more but didn’t know what to do, so we moved to a new state. The drive was hard enough with multiple rages.

In our new state with a new house, new job and new everything, the rages became something we had never experienced before. The sheer violence we experienced daily could never ever be conveyed in words. For the first time in our lives with Kreed, we were afraid. Feeling that fear was one of the worst experiences of our life.

But it also pushed me to fight harder and look harder.

We knew our boy was an amazing kid and so loving and generous and joyful. He loved hugs and snuggles and loved to talk every day on his device about food and showers. Yet here he was beating himself, the house and us daily. Something was wrong, and we weren’t going to stop until we found it.

We finally got a break when the rages stopped suddenly, and he wouldn’t get out of bed, eat or engage with us at all. It was a break because we finally felt like the doctors wouldn’t see a kid with autism raging, but a kid who was in a health crisis. After four days of no eating and throwing up anything he ate, we sped off to the ER. The rest of our journey is chronicled in both “Out of the Darkness” and “Here but Not Here.”

boy smiling

The rest of this story is about his awakening. Our boy finally woke up from the pain, the medications and the fog that took him away from us. It feels incredibly miraculous that he has come back to us, and it’s a testament to his strength and our strength as a family. We have documented our entire experience from beginning to end with no filter. Our pain, our loss, our love, our return, our joy. We documented this journey to show others to never give up. If you know in your gut something is wrong, if you know it’s more than “behavior” and you know your child, keep fighting. If we hadn’t, Kreed may not be here today. If we hadn’t moved and met the incredible doctors at Memorial Hospital in Colorado Springs, Colorado, he may not be with us today.

This is also a testament to Kreed’s strength. Our son was in incredible pain, which we may never know or understand the depth of. He tried to tell us and kept asking for the hospital and doctors. We continued to listen and we took him to some doctors and were continually turned away and told that it was nothing. Listen to your kids even when they don’t say much. I am so thankful we continued to take him to the doctor and continued to question him. Never again will I doubt his communication attempts. He knows when something is wrong, and I can’t imagine how frustrating it must have been when he knew no one was listening and he was suffering in so much pain. I can’t imagine how this must have felt for him. No wonder he lashed out so severely until his body finally gave up.

I’ll never forget the day our son came back to us. When he smiled again. Laughed again. Hugged again. Kissed again. Communicated again. Those memories have slowly replaced the memories of him lying in that hospital bed and needing a machine to breathe for him. And we know for the rest of our life to fight, fight, fight for Kreed.

Fight for communication, fight for health, fight to be listened to, fight for life. I can’t imagine being Kreed, locked inside his mind, unable to fully communicate his thoughts and knowing he’s not always being listened to correctly. Knowing that his body doesn’t always work and causes him pain. I can’t imagine that.

And for that reason, I’m more than happy to spend the hours and hours it takes to get him to communicate on his device, teaching him how to do things himself, listen to him, fight for him and try to find new ways to experience joy. We are exhausted more days than not, but I barely feel it because I always keep in mind that I can talk, I can be listened to easily, I can make my own food and I can live a life without relying on other people to do everything for me. He can’t do any of those things and needs 24-hour supervision and someone to help him every step of the way. So no, I don’t feel like my life is over because we have to spend so much time helping him, and no, my exhaustion doesn’t compare to what he goes through every day.

And to my dear sweet boy Kreed, I am so sorry. I’m so sorry for not figuring it out fast enough. I promise to fight even harder next time and listen to your words. I will keep teaching you and helping you and most of all, finding even more joy for you to experience. We love you with everything we have and more.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

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Something has changed quite recently. Something simple, yet from society’s point of view, something quite life-changing.

It isn’t my son. His needs and difficulties are exactly the same as what they were yesterday. He still can’t speak and has limited communication. He still has global developmental delay and learning difficulties. He is still doubly incontinent and vision-impaired. He very much still has autism. His genetic condition (neurofibromatosis type 1) hasn’t miraculously disappeared. He requires full support to meet his every need. But something quite fundamental has changed for him.

For the first time, his invisible disabilities have become visible.

He has always flapped in public. And screamed. Those just generated stares and cheeky remarks.

He has always made strange noises and avoided eye contact. That just made people look the other way, pretending they don’t notice him.

We have used handicapped stalls for some time now. I think some people think I’m someone very special because I pull a key out my pocket to open the locked doors.

We park in handicapped parking spaces and display a “blue badge.” But we were questioned and accused because we lifted a child out the car who then proceeded to walk to where we were going. Why does society only think you are disabled if you physically can’t walk?

We have endured awful comments, hurtful stares and had many people avoid us when our son has been in obvious distress over sensory overload or frustration due to communication difficulties.

We have had to live with the fact our son didn’t “look” disabled, so to most people, that meant he couldn’t be disabled. It was frustrating, distressing and hurtful.

But now that has all changed. His invisible disability is now blatantly obvious. And the difference in the public’s attitude has been incredible.

Miriam Gwynne the mighty.2-001

We have just been given a wheelchair for Isaac.

Suddenly, people are smiling at his flapping, they find his noises endearing and cute and they even open the door to the disabled toilets to help me in. They no longer have an issue with me parking in a handicapped space because they see a wheelchair coming out of the back of the car and a child being lifted into it. Strangers are coming up and talking to us like we are no longer contagious. When my son screams, rocks and bites himself, people want to help and ask what they can do to assist us, instead of talking about us behind our backs or staring at us in disgust.

When we take him to appointments, people now go out of their way to help and support us. Even medical professionals seem to take things a little more seriously. People are listening, respecting and supporting us, whereas before these were all major challenges.

All we did was sit him in a chair with wheels. But it changed things.

They told me having a wheelchair would be life-changing. I certainly would agree with that. A simple chair with wheels and handles has made life more pleasant, more manageable and much safer. I was expecting it would be major change for us. I just never realized it would be a major change for everyone else.

When our son’s invisible disability suddenly became visible, we changed how we behaved. I viewed my son as disabled, but now because of a simple wheelchair, others see him as disabled, too. The thing is he is just the same Isaac he was before. The only thing that changed was a set of wheels.

Follow this journey on Faithmummy.


“I don’t know how you do it!” As a parent raising a teenager with autism, I’ve heard this a lot.

Well, here’s how we do it.

It’s just like being parents of typical kids but with more “oomph.”

We work harder for those “normal moments.” The times he wants to take a walk by himself. Or gets his own lunch. Or works out a problem with his brother. Or remembers to feed his fish without me reminding him. Or washes his face all by himself, twice a day, despite the fact that he hates light amounts of water on his face.

These moments are the result of a lot of practice with me. Practice without me. Practice again with me. Practice next to me, as he walks new routes by himself and I ask myself, “What was he wearing just in case he wanders off course and I need to call the police?”

Or as I feel impatient doing the same thing hundreds of times and have to breathe the patience back into myself.

Reminders. Stopping the reminders then quickly starting them again because he isn’t ready for no reminders yet. Complaints. Struggle. Then less struggle. Then no struggle.

Then pride.

And then celebrating how proud he is of himself and his accomplishments! Celebrating with him and his brother, who is just as proud of him as we are. Treasuring those smiles from all of us. Trying not to cry as we see his huge smile and not wanting to embarrass him. Usually crying anyway but just a teeny bit.

Oh, and those hormone fluctuations? Yes, they’re just like your kids, except the highs are higher and the lows are lower. And louder.

TJ suddenly crying — loudly. Like a little kid. And he doesn’t know why. And if he does know why, he is crying too hard to tell us. Deep squeezes as he cries because the pressure helps to calm him down. Deep breathing that we have practiced a thousand times. If we’re home, snuggling the dog because, “Pup always makes me feel better, Mom.” If we aren’t at home, I’ll smile politely as you stare, but not for too long as I squeeze this 6-foot-tall lanky boy with a mustache.

Those social struggles? Not an issue for us. He doesn’t hang out with friends. He doesn’t ask girls out (he did write a letter to a girl once but never mailed it). He is a rule follower. “I’ll never take drugs and alcohol, Mom, they are bad for you! I’m a non-caholic!”

He doesn’t get phone calls, which is OK since the sound from the phone going straight into his ear has always bothered him sensory-wise. There’s no social drama at school because he puts 100 percent of his energy into getting through his day and doing his work, because to him, that’s what he’s there for. He can relax when he gets home. Sometimes he will have a “lunch bunch” with some friends (the guys love him, thank goodness) but someone has to remind him to ask them about their interests, too, or he will talk about animals or “Family Guy” the entire time. (By the way, we never let him watch “inappropriate” shows, but somehow he watches them anyway! But these things are good for his social life, since all of the kids his age watch them and they talk about it together with lots of laughs.)

When I ask TJ if he wants to hang out with a friend or go to a dance, he always says, “No thanks, Mom. I’m not a hang out kind of guy.”

When he sees a friend driving by with a white-knuckled parent in the passenger seat, he is so happy for that friend. When I ask if he is ready to learn how to drive, he says, “Not yet, Mom. I’m afraid I’ll fall asleep or get distracted. I’m not ready.”

And when he has a question about anything, even something embarrassing, he always asks. He is not embarrassed. He will grin a bit, but he’s not embarrassed. He doesn’t ask his friends for information on dating, or sex or the changes his body is going through. He asks us. And we always answer honestly and openly and follow up a couple of days later after he’s had time to think about it.

So getting through this teenage thing is basically the same thing that parents of neurologically typical kids experience, right?

Just with a little more “oomph.”

Lauren Jordan the mighty.1-001


People often write about the challenges of having a child with autism. Yes, it can be hard. But not how people think. For me — and I can only speak for myself — it’s hard when my son faces challenges. It’s hard when I have to fight for services that should be a given. It’s hard when the insurance companies don’t pay for what we need or when a provider doesn’t take our insurance. Other’s people ignorance is hard. But my son, he is a joy. He is a bright light in a dark tunnel. He is the life preserver I need when I am drowning in the system.

Here are the eight best ways my son with autism brings me joy:

1. To people driving by, my yard looks like it’s full of weeds: dandelions, clover and the like. To my son, it’s a field of beautiful flowers that he picks for me as soon as they pop up in spring until the last days of fall.

2. When he is excited, he jumps so high and flaps so hard that I think he’s going to break something one day. How many times can you say you were that excited? Over a TV commercial? Or breakfast? Or popcorn popping? Or a red crayon?

3. How many times do you say, “This is the best day ever!” after a trip to Wendy’s or McDonalds? He says it almost every time we go there.

4. When is the last time you flapped yourself right out of your chair at the movies or stood up, jumped up and down (while flapping) and clapped because the movie was that fantastic? He did last week.

5. Can you repeat every word of every episode of your favorite TV show? My son can. And movies. It’s pretty cool. You can do that, you say? Can you mimic every sound and voice? He sounds just like Merida in “Brave” or Wall-E. I’m totally jealous.

6. He can draw scenes from any show he loves, too. Intricate scenes. He pauses the video and copies it with the detail of a master artist but in pencil and crayon. He even taught himself cursive from an episode of “Gravity Falls.” I painstakingly learned cursive from Sister Carmen in second grade.

7. He can smell chocolate on my breath from three feet away because he has super smell, one of his super powers. No joke. I can’t sneak anything past this kid in the house and I love it. I now have a partner in crime.

8. Most importantly, he doesn’t initiate conversation unless he means it. Really means it. So when he voluntarily says, “Mom, I love you!” he means it from the bottom of his little heart. He feels it with every fiber of his being every time he says it. They’re the most beautiful words I can hear. It took years to hear it, and I cherish it every time he says it. He also says it when he kisses my shoulder, or shares his art or turns on my favorite Christmas movie to watch together (even if he falls asleep every time we watch it). Each time he does these things, it means he loves me, he trusts me and I am his “#1 favorite person in the whole world.”

Priceless.

children in front of TV

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.


Santino Stagliano loves drawing dragons.

The 10-year-old with autism even started his own nonprofit company, “Santino’s Dragon Drawings,” to sell his designs on T-shirts, hats and other products online. Half the money he earns through sales goes to the Center for Autism in the Staglianos’ hometown of Philadelphia.

Since Santino first began selling his designs in April 2015, he’s sold hundreds of T-shirts and has even been featured on the news. But Lisa Stagliano, Santino’s mom, said her son never really seemed impressed with his success, she told Philly.com.

Finally I said, ‘What would excite you?’” Stagliano told the outlet. “‘If Adam Sandler wore my shirt,’ he replied.”

Santino’s dreams soon came true in a big way. A photograph of the “Happy Gilmore” star wearing one of Santino’s dragon T-shirts recently surfaced on the Internet:

SandlerSantinosDragons
Photo from Santino’s Dragon Drawings Inc. Facebook page

Stagliano says she thinks her friends got in touch with the actor’s representatives, but she isn’t sure how they did it, according to Philly.com.

Santino was ecstatic when he saw the photo. On August 20, Stagliano posted a photo on the T-shirt company’s Facebook page of Sandler wearing one of Santino’s dragon T-shirts next to a picture of Santino reacting to the photo of Sandler:

Screen Shot 2015-08-28 at 12.10.52 PM
Photo from Santino’s Dragon Drawings Inc. Facebook page

We cannot thank you enough, Adam Sandler,” the Facebook post accompanying the photo reads. “The joy you brought Santino and the autism awareness you’re helping spread is amazing. Dreams really do come true.”

To learn more about Santino’s Dragon Drawings or to purchase an awesome dragon T-shirt, visit the company’s Facebook page and website.

Related: How a Boy With Autism Launched His Own Nonprofit With the Help of Dragons


I am a mother who’s been diagnosed with Asperger’s, and I have autistic children.

I wrote this account of positives because I believe these are strengths I have. I see too many negatives in the media about autism, so enjoy these positives and see if you recognize yourself or your child.

1. I can hyper focus. I can zero in on every grain of sand as it trickles through my fingers. I see colors brightly and instead of hurrying when I walk, many of us who are autistic might stop to examine a crevice in a wall or a spider weaving a web in a bush. I can zero in on a leaf on a tree from a distance when I look out the window of a moving train, tracking it and then moving on to the next one. I will pause to watch an ant make its way across the pavement, curious at to where he’s off to. Many of us who are autistic like to read or play video games, becoming completely enthralled and enjoying these things immensely. Crocheting, painting and anything that’s cause and effect is extremely satisfying to me because it’s constant and dependable. Visuals can be important to us.

2. I find things funny that sometimes I really shouldn’t. I love comedy though I don’t always understand it. When I laugh for seemingly no reason, it’s because I’ve noticed something you haven’t or because I’ve replayed a funny memory and felt the exact same reaction all over again. The same goes for unexpected crying.

3. I enjoy certain sounds like music, wind in the trees or the rushing of a river. I hear each note and each beat individually, the rustle of each leaf and sway of each branch. I hear every ripple of a stream as the water rushes over every rock. I hear the coffee machine, the people talking and the beat of the music playing in a crowded café. I zero in on one to help me cope with the noise.

4. I say what I think. You are never in doubt as to how I feel. You may not understand why I feel angry, sad or happy, but you will know about it! I’m honest and if I do lie, I have great difficulty with it as it goes against the very core of my being.

5. I make sense of my world by finding things to cherish and collecting them. Through homing in on that one thing, the world then makes sense to me. It’s a form of security in an unpredictable day. Anything could happen! But if I know that one thing will be in focus, I can bring it home and add it to the others, and then the world is right. I show great passion for my collectibles, whether they’re video games, books, colored glass, bottle tops or shells. It helps me cope after a busy day. Knowing the little shell I found on the beach one year ago is on a certain shelf with all my others provides security and a sense of worth.

For parents of children on the spectrum, cherish your child’s differences, stoop down to his or her level and listen to what your child is listening to. You may be surprised!

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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