To Those Who May Question Why We Try Therapies for Our Son With Autism

1k
1k
1

I love the autism community. I love the passion, enthusiasm and commitment parents, caregivers and therapists have for the children and adults on the spectrum.

However, I find that same community can be a much-divided one, too. Pick an issue and there seem to be two opposing sides. ABA therapy is good, ABA therapy is bad. A biomedical approach works, a biomedical approach is a waste of time. On any issue, it seems lines are drawn in the sand, and that same enthusiasm and passion can quickly turn into a debate.

Michael Hollenbeck and his sons
Michael and his sons.

Even the most basic issue, such as whether or not to do any therapy, can cause disagreements. Across message boards and at conferences, I have encountered many people who have told me, “Why do any therapy at all? You should just love your child the way they are.”

I’m very fortunate to have a wife who asked the same question I did when our 2-year-old son Cameron was diagnosed with autism: “What do we need to do for our son so he can live on his own terms?” Our family set out on a journey to leave no stone unturned.

During our four years on this journey, we have tried different therapies and different biomedical approaches. Some have been amazing and some haven’t worked at all. There have been a lot of tears and challenges along the way for both my wife and me and our son.

The message I have for people who say, “Stop trying to change your child and love them just the way they are,” is this: It’s not about changing our child, it’s about giving him an opportunity.

My worst fear as a parent of an autistic child is who will take care of my son when my wife and I aren’t able to or when we pass. We don’t want our son to spend what should be the best years of his life living in an institution on someone else’s terms. We want him to live a life where he can support himself, make his own choices and see what this amazing world has to offer.

Of course, none of this is guaranteed, and he may have to live with assistance anyway. Because of some of the therapies we’ve tried, he may grow up being upset at my wife and me. He may grow up and thank us, or the truth may be somewhere in between. Either way, my wife and I can look him in the eye and say, “We did this out of love, so someday you can live the life you want to live and give yourself every opportunity to make choices that make you happy.”

Our son is now 6 and his progress has been amazing. He’s becoming more verbal and social every day. My wife and I feel confident we’re on the right path for our family. Even though some people may disagree with that path, I hope people will come to respect it as much as we respect whatever path others with opposing views choose.

Maybe we have wasted time and money, but one thing for certain is that we aren’t on this journey for change but for opportunity. As the old saying goes, “You don’t love your children because they are bad or they are good. You love them because they’re yours.”

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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.

1k
1k
1

RELATED VIDEOS

JOIN THE CONVERSATION

For the People Afraid to Ask Questions About My Child With Disabilities

238
238
0

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.

238
238
0
JOIN THE CONVERSATION

Keira Meikus Gives Speech About Autism on School's Morning Annoucements

517
517
4

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.

517
517
4
TOPICS
, , Video,
JOIN THE CONVERSATION

The Article My Nonverbal Son Wrote to Share His Experience With Autism

1k
1k
4

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
Jack.

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.

1k
1k
4
JOIN THE CONVERSATION

'Pathfinders for Autism' Launches #SayItIn68 for Autism Awareness Month

57
57
0

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.

57
57
0
JOIN THE CONVERSATION

Why I Stopped Throwing Birthday Parties for My Son on the Autism Spectrum

2k
2k
12
baby with cake on his face
Eli

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.

2k
2k
12
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.