Miriam's son in a wheelchair

When My Son's Invisible Disability Became Visible

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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.

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How We Guide Our Son With Autism Through His Teenage Years

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“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

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The 8 Best Ways My Son With Autism Brings Me Joy

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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.

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The Awesome Way Adam Sandler Supported a 10-Year-Old With Autism

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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:

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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

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5 Reasons I Like Living With Autism

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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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10 Things I Wish Theater People Knew About Asperger's Syndrome

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I’m your average college junior theater major who loves to sing, act, dance and get her hands and clothes dirty in the scene shop. I also happen to have Asperger’s syndrome, but that doesn’t keep me off the stage because I love to perform! Here are the 10 things I wish theater people knew about Asperger’s syndrome:

1. There’s more than what you see on the surface.

On the surface, I’m socially awkward, totally out of it and obnoxious. Inside there’s a girl who can understand other people’s wants and needs, never runs out of show tunes to sing and can remember choreography from prior shows even after eight years. If I’m working backstage and other actors have certain requests for things, I can accommodate accordingly. For example, in a production of “Sweeney Todd” I worked on this summer, the girl who played Johanna asked to not have her ears show when I did her hair, and offstage I had two bags of frozen vegetables for her itchy skin.

2. I don’t always look before I leap.

Sometimes I tend to do or say things without even thinking twice, and yes, it may cause embarrassment for you. But trust me, I feel the burn of what I did afterward. It’s just that when I’m so caught up with whatever impulse I act on, I’m not thinking about the direct consequences in the moment.

3. Don’t just give me a fish, teach me to fish.

I’m usually eager learn how to do something you’re doing — a fouette turn, fake punch, a certain dialect. Don’t be afraid to teach me how to do it and give me pointers along the way. Oh, and brace yourself for having to repeat it with me multiple times (or fewer) because it’s a trial and error process for me.

4. Anxiety is a part of the deal.

Sure, there’s stage fright you get before performing, but for me it tends to go deeper than the surface, mainly because of something in a scene that may provoke anxiety for me. But you and I can figure out how to help me navigate it so I can thrive onstage.

5. Some things may not make sense to you as they do to me.

I’ve begun to carry around small stuffed animals backstage with me. Sometimes I need something to hold on to for comfort and to keep my senses in check. It may seem silly for someone in their 20s to carry around a teddy bear backstage, but it’s my way to make sure I won’t lose my mind.

Alison Loughlin the mighty.3-001

6. Learn how to head off meltdowns before it’s too late.

They happen only if I’m anxious, overwhelmed or easily upset. If you notice that I’m either agitated, going into sensory overload or stressed, please move me out of the room immediately. If you already know what upset me, it’ll be easier to cope. And whatever you do, don’t make fun of me for something I have trouble with from time to time.

7. Be mindful of how you speak to me.

Nothing is worse than being treated like a baby over something I’m perfectly capable of doing or yelling at me because I won’t do something you ask me to do. And neither tone will certainly help me in the midst of a meltdown because that only adds more fuel to the fire. Sometimes, all I need is a little encouragement to get me through a tough situation.

8. Concentrate and feed off of what I can do.

I love to be challenged in musicals and plays, because I know there are certain roles out there I want to be able to portray that will challenge me. I don’t always want to be in the ensemble, so playing a featured or big role every so often is great to show what I’m capable of. If there are killer acro tricks, I want to show off — there can be a way to incorporate it!

9. Pay attention to what I’m trying to tell you, even if I can’t find the words to say it.

Subtle clues on what’s agitating me in a certain situation may give you an idea on how to help me cope. For example, the timeless “thousand-yard stare” and sudden silence only occur when I’m anxious, so in that case, you can put your arm around me to snap me out of it. If I suddenly get quiet and pull away, then it’s a clue that something’s going on and I need help.

10. Acceptance is the way to go.

Embracing the quirks that come with the package can make it successful, no matter if I’m backstage with the crew or onstage taking a bow with the cast!

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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