I recently had a friend tell me she was not sure it was OK to ask me questions about my child who has multiple disabilities. In fact, she told me she wasn’t even sure the right questions to ask to begin with. And it got me thinking…

When we see something we don’t understand or is different we feel compelled to want to know the “why” or the “what happened.” Perhaps it’s part of the survival instinct. So, often times when someone approaches me and says, “What’s wrong with him?” my instinct is to say back, “Rude people are what’s wrong with him.” When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking. After all, I am not sure I am that much more comfortable with a stranger asking me a more direct question either. If someone were to asks, “Why is he making that hooting noise over and over?” I might have absolutely no idea myself in the moment.

bracelet that says just ask

Parents, whether we like it or not, we are the conduit to bridging our children with this
society. Even if one person out of 10 who ask, are asking to be nosy or rude, if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude. So, instead of “mind your own business” or “what’s it to you,” I try “I think what you meant to ask is that you notice that he can’t talk. This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable. There is nothing wrong, but it seems like there is an aspect of his behavior you would like to know more about. He has autism and maybe one of us can tell you more.” Pollyanna much? Yes. But I believe it’s the only way we will truly build awareness.

On occasion, people want to ask how they can help. A lot of times people don’t realize we need help. And frankly, many of us have no idea what to say when you ask if you can help. Sometimes we feel our honest requests for help would be too much to ask of a family member or friend. And sometimes people just don’t want to do what you do need… so their perception becomes that you are are not taking their help when they offer up something unuseful. All can serve as barriers to asking the right questions… or giving the right answers for assistance.

People often make assumptions instead of asking at all. A young woman I know asked for advice in a situation about a member of her youth group. This teenager has autism and when the entire group is together she tends to get loud and runs out of the room.  This young woman sighed and said, “She only does it in big groups… attention… We are thinking of ways to let her know that maybe this group isn’t a good fit for her.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior. She wondered aloud if they should contact the girl’s mother to try to figure it out. I wondered aloud what would happen if they just asked the girl herself, since she is her own expert. We cannot help but to look at others using our own lenses. But sometimes our lenses are smudged, rose colored or even broken. By not asking in this kind of situation, others assume they know what is best.

Let’s face it… it’s uncomfortable to ask about people who are different than we are. We may be curious, afraid of coming off as rude or have misread others cues. We may not want to know the answer; we may not want to change our own ways. We may already have assumptions and think we are right, we may be uncomfortable or frankly, some of us… we may just not care.

For those of us being asked, we may be offended, we may be hurt, we may not want to talk about it. We may not know the answer, we may not want to admit to an issue or call attention to it. We may not want to be reminded. We may not want to be rejected.

So, let’s all agree on something: asking and telling can be difficult.

Let’s move past it.

Families like mine… we are the awareness. How you choose to let that manifest is up to you. In my world, however, if you ask me, I promise to tell you.

Follow this journey on Running Through Water.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. 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 Submit a Story page for more about our submission guidelines.


Last week, Keira Meikus, a 9-year-old at Our Lady of Sorrows Catholic School in Homewood, Alabama, used her school’s morning announcements to make a powerful statement about autism for Autism Awareness Month.

“I can’t speak for everyone who has autism,” she says in her speech (below), but I’m sure most want what every typical person wants — to be accepted and to belong.”

Her full speech reads:

Good morning fellow OLS students! April is Autism Awareness Month, and I was asked if I wanted to talk about it. I do want to talk about autism acceptance.

A person who has autism has a brain that works differently than a typical brain. Neither is better — they are just different. There is a spectrum, like a number line. One person with autism may be like a 1 on the spectrum so you only notice a little difference, but someone else may be a 10 with lots of differences.

Some people with autism have brains that work so hard and see and process so much so fast that they cannot even walk or talk because their brains are holding onto so much other information.

I have autism. I am like you. I go to school, I take tests, I watch TV, I like music and playing with my friends. I am also different than you. Some noises hurt me, I flap my hands when I get excited or overwhelmed. I don’t always make eye contact when I should, and I don’t always know when someone is being serious or joking.

I can’t speak for everyone who has autism, but I’m sure that most want what every typical person wants — to be accepted and to belong. Autism is just part of who we are.

“We are incredibly proud,” her mom Sarah Charles told ABC News. “We knew she was made to shine and she’s shining at 9.”

Earlier this week, a 10-year-old made headlines when his mom shared a poem he’d written about being on the autism spectrum. More than 10 thousand people shared the original copy of his poem, “I Am,” where he talks about wanting to fit in while accepting his differences.

The piece below was written by my 14-year-old nonverbal, autistic son, Jack.  He wanted to write it for his school newspaper in honor of Autism Awareness Month. Three years ago, he was “unlocked” and learned to communicate by typing on a letter board or iPad. Since then, he has educated our entire family on what his life with autism has been like and the unique challenges he routinely endures. He attends seventh grade in our neighborhood school and is mainstreamed in all his classes with the help of a 1:1 aide. He makes honor roll every quarter. Jack is passionate about educating others on autism so that he and kids like him can lead full and productive lives with the presumption of competence.

mother sits with her nonverbal son as he writes with the help of a tablet
Amy sitting with Jack as he writes.
article in school newspaper written by nonverbal teen with autism
Jack’s article for his school newspaper.

Overcasting Shadows

Autism is defined as, “a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language.”

Autism feels like an overcasting shadow that came and betrayed the light within me. Most people do not believe autistics are smart and can do oddly special acts others may see as strange and different; but we are very smart.

A normal day for autistics starts casting shadows and is quite challenging. Any stimulation can cause my body control severe distractions passing on autistic behavior. Keeping eye contact is very hard for me. Being loud can cause a lot of distractions.

Certain comfort of sound helps me concentrate so I may hit or bang certain items for the sound they give back to me. Each person is different in casting their own shadows pursuing an endless escape from going back into a prison of the body.

I say let sincere beings do acts of kindness as a favor to all autistics. Many lack empathy and don’t show an understanding of autism’s true sacrifices. In the future, you can say hello, smile, ask students to join your group, and not stare at students with autism.

teen boy with headphones and backpack holding a football

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

This week I’m honoring Madison, my 24-year-old daughter with autism. My inspiration comes from a challenge by Pathfinders for Autism, the nonprofit I was privileged to help found 16 years ago.

Rebecca Faye Smith Galli with daughter, Madison

In the spring of 1997, a few months after my paralysis, I joined a small group of parents of children with autism who were frustrated with the lack of guidance we were receiving from the medical and educational professionals. In those pre-internet days, we often relied on information shared between parents in the waiting rooms, carpool lines or, in my case, from a small yellow flyer in my then 5-year-old Madison’s school backpack that changed her life.

Stunned by the value of these “happenstance” discoveries, our parent group launched Pathfinders for Autism in February 2000. Our mission was simple: To share with others what we had learned to improve the lives of individuals with autism and the people who care for them. Celebrating “15 Years of Awesome,” our staff of eight — including an individual on the autism spectrum — served over 18,000 individuals in 2015.

Photo collage for Rebecca Faye Smith Galli’s post

As you may know, April is Autism Awareness Month. This year, Pathfinders’ month-long campaign centers on #SayItIn68, a challenge that highlights the fact that an estimated 1 in 68 children in the U.S. have been identified with autism spectrum disorder, according to the CDC, while asking folks for a 68-focused submission that shares how autism awareness makes a difference or what it means to them.

So in the spirit of my new mantra, elevate, I’ve answered the challenge with this submission:

After my paralysis, I couldn’t care for Madison on my own so I hired caregivers to be with her 24 hours a day, seven days a week. Although this year has had more rough patches than bright spots for my Madison, I’m grateful for Pathfinders’ prompt that sent me on a search through photos and calendars where I found the names of 68 caregivers who have helped me with Madison. To these amazing individuals, and all the others who continue to help me with her care, I say, “Thank you!” I couldn’t have managed without you.

Follow this journey on BeckyGalli.com.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

baby with cake on his face

To say that I love parties is an understatement. From planning the theme, to picking out invitations, creating the atmosphere, selecting the food, down to the anticipation of the guests arriving… oh mercy, I’m getting lightheaded just thinking about it. I love people and small talk and games and food; I’m good at parties.

So when I became a mother, the thought of creating wonderful party memories with my children was something I looked forward to and daydreamed about often. I think I had my first child’s birthday party planned before I even picked out his name. It was a pond theme complete with fishing games, party hats and a frog cake, and I was in amphibian heaven.

Every year after that, the parties got harder. And the harder they became, the harder I worked at making them even more elaborate and fun. Maybe, I thought, if I brought a real puppy to a puppy-themed party, our guests wouldn’t notice him ignoring his gifts and playing with cups from the table. You see, birthday parties don’t mix well with my son, who’s on the autism spectrum.

On his 4th birthday, he sat in his room the whole party watching Wiggles videos with his door closed while the other children ate cake and played on his brand new swing set. After the guests had gone home and the cake was put away, I sat in my room and wept. I had just spent my precious son’s entire birthday engaging other children and cutting cake while he sat in his room alone.

Still, I continued to do birthday parties for my son. I mean, what kind of mother doesn’t throw her kid a party? What would people think? Our life was already so different. And his sister loved birthday parties — I didn’t want people to think I loved her more or thought of him less.

He started to reach a socially acceptable age to stop the birthday party charade, and we settled into outings with the family to celebrate his big day, and he was so happy to just be with us. This was around the same time baby number 3 arrived and parties for him started up again.

As you can imagine, my favorite party was my own personal pity parties, and they were quite an affair! But what’s that saying… “If you want to make God laugh, tell Him about your plans.” Needless to say, I imagine He laughs His Holy head off at me daily. Following my son’s autism diagnosis and four failed attempts at birthday parties, I decided something had to change. I knew people would look at me strange and I might even make some family and friends upset, but we just couldn’t do it anymore. All the planning, the money, the decorations… it hadn’t been for my boys at all. It had been for me. I desperately wanted “normalcy” for them — and for me. I wanted pictures and cake and friends to celebrate, even if that meant making my child miserable in the process. I knew deep down I owed them more than that — they deserved so much more than my selfishness masked by brightly colored balloons.

As Eli’s 5th birthday approached, I racked my brain about how to make his birthday special and memorable and his. It’s hard to ask a child what he wants to do for his birthday when he can’t speak, but because he’s ours… I brainstormed with my fellow Eli experts. I remember asking my husband and my big kids, “If Eli could have a day that was just his, what do you think he would want to do?” “Well, he likes looking at himself in the mirror!” “And he likes eating at Moe’s!” “Oh, and since we can never figure out what he likes to play with, we could just take him to a toy store and let him play with everything!” And Eli Day was born.

We started off the day with lunch at Moe’s… you know, “Welcome to Moe’s!” Eli got his favorite lunch and two cookies, and we let him stand up in the booth and invade the other patron’s personal space as much at he wanted.. I mean, it’s Eli day! Next, we headed to the biggest mirror we could find: the one on the side of the escalator at the mall. Although people stared and looked annoyed, we let him loose. He ran in front of that mirror a million times, jumping and doing his “Eli moves” and faces. I had never seen his little face so happy — that beautiful face was beaming. And though it wasn’t a “normal” birthday activity, it was absolute perfection to me. It totally kicked “normal’s” butt, and I didn’t have to pay a “per kid” fee for everyone else to have fun. Next we headed to the Toy Store; Eli was in charge. We let him walk down every aisle, touching every toy. When we thought we saw something that peaked his interest, we would hold it in front of him along with another option and tell him to pick, and when he did, he got to put it in the cart. And when he insisted on buying yet another Woody doll, we happily agreed. It didn’t have to make sense to us because it made sense to him and it was his day. Instead of cake when we got home… that’s right folks… more cookies because that’s Eli.

As I lay in bed that night and thought about his day, I wept — but only happy tears. Are you starting to see a pattern here? I’m a crier! For the first time, I celebrated my son for exactly who he is — all the things that make him different and unique. It was the first birthday I didn’t spend my day making sure other children were happy… I spent my day watching him be happy. And that was the best gift I could have ever received.

So is my career as a party planner done? Nope, I just threw a pretty awesome (if I do say so myself) glamping slumber party for my daughter last week complete with make-your-own trail mix, an inflatable deer and a faux campfire. But she is her mother’s daughter and like me, she loves a party and being the life of it. That’s what made her face beam on her birthday. Just like Isaac prefers a day riding roller coasters with his dad. That’s his idea of a perfect birthday! I’m convinced that no three children containing the same parental DNA have ever been so different. But I like different, and I think we do it better than anybody.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. 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 Submit a Story page for more about our submission guidelines.

At the end of March, Robert De Niro, co-founder of the Tribeca Film Festival, announced the anti-vaccine documentary “Vaxxed: From Cover-Up to Catastrophe” was removed from the festival lineup.

“Vaxxed” is directed by Andrew Wakefield, the former doctor behind a 1998 study published in the medical journal the Lancet that claimed to find links between autism and the MMR vaccine (measles, mumps and rubella). The study was retracted by the Lancet in 2010. Wakefield lost his medical license the same year.

De Niro, whose 18-year-old son is on the autism spectrum, released a statement following the decision, stating:

My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family. But after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for.

On Wednesday, De Niro appeared on the “Today” show to talk about the controversy. “I think the movie is something that people should see,” he says in the interview below, adding that he hasn’t fully explored the backlash.

“I, as a parent of a child who has autism, I’m concerned,” De Niro says, “And I want to know the truth. I’m not anti-vaccine. I want safe vaccines.”

Watch the interview below. De Niro discusses “Vaxxed” around the 2:15 mark.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.