To the People Who Assume Parenting a Kid With Autism Is the Hardest Part of My Life

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Please don’t assume parenting a kid with autism is the hardest part of my life. He’s not, but other people can be. I can’t imagine a child who does what I ask without asking for a reason and offering a five-point argument in return. I can’t imagine watching my child eat salad. Or anything green. I have no desire to change my son, or those parts of my husband and myself that are reflected in him.

If you have a kid who is any way out of the “ordinary,” then you will likely be handed advice from other people. These people may mean well, but I think they’re jerks.

There are people with a list of what it means to have autism, and what it means to parent a child with autism. This list is generally negative. I know it is; I’ve heard it many times: Violent. Aggressive. Lacking empathy. Needs discipline. Can’t let them get away with anything. Only way they’ll learn.

These people are often strangers, but sometimes they’re our friends and our family, and they whisper to our fear that we are bad parents. Bad parents parenting bad kids, and doing it badly.

And when we hear that list, what do we do?

Sometimes we walk away. We grab our beloved children and we hightail it the hell out of there. We rant. We scream. We hold our children close and whisper, “You are loved.” But how do you shake off the condemnation of others in something that is so close to your heart, especially if your kid totally did push the toddler down the slide?

I have my own list detailing the courage of my 5-year-old son — the way he takes a deep breath, bottom lip thrust out and eyes wide as he walks, haltingly, knowing it’s going to hurt, but not knowing how much and in what particular way — as he moves his body and senses into a new space. This is f*cking bravery. A list detailing his acts of empathy and compassion to those who don’t or choose not to see it: his focus, determination and his delight at making his little sister laugh. This boy who loves so fiercely and quickly and whose heart can be broken so easily.

When I’ve pointed out this list to others, what I’ve found is that my list is not often wanted. Or it’s ignored with a sweep of a hand, an “Of course he does good things, but he does bad things too, right? Bad things?”

Worse still is when I give the list and instead of feeling empowered, I feel dirty. I shouldn’t need my list. It panders to the idea that his existence requires a balance — as long as my list is bigger than theirs, he is valuable. I should not have to defend my child’s existence by weighing up lists. No one should. Then there’s my son.

little boy wearing a green crocodile costume
Kitty’s son wearing a crocodile costume.

He listens.

He hears.

He understands.

Is he balancing his worth based on lists? Does he feel like only bits of him are worthwhile? Loveable?

Maybe it’s not other people that are the hardest part. Perhaps it’s the attention I pay them, the parts of them I let into my relationship with my child. I don’t know how to navigate this, to teach my kid that all of him is worthwhile when he’s in a world that presents challenges for him. I can control the world he and I build together.

The world we build will be gentle, and it will explain (repeatedly, probably, and with visuals) and slowly, we will add more people — people who love him and people who understand. These are the people I will listen to, the people who will speak to my heart and the people who, I hope, will eventually become the world for everyone else like him, too.

A version of this post first appeared on Playing With Fireworks.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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.

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Video Gives Intimate Look at Autistic Brother’s Life in Assisted Care Facility

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short video recently released by Autism Speaks takes an intimate look at the relationship between two brothers, and one’s experience in an adult assisted care facility.

Author Eli Gottlieb, best known for his book “Best Boy,” became the guardian of his older brother Josh, now 60, when their parents passed away. Josh, who’s on the autism spectrum, has a “profound anxiety disorder, perseverates constantly”  and requires direct care staff.

Aging with autism: A brother’s storyA look inside the relationship between two adult brothers, one on the autism spectrum, who grew up at a time when very little was know about autism…

Posted by Autism Speaks on Saturday, March 5, 2016

 

While Josh and his family are content with the care he’s receiving, Eli points out a number of problems with the system designed to help adults with intellectual and developmental disabilities.

“The world of the adult individual with autism is sorely underrepresented, both at the policy level, federally and state, and most of all, in general,” Eli, who’s written on this topic in the New York Times, says in the video above. “It’s just not talked about. My brother is lucky. He’s in a beautiful place with a great fit and he’s happy.”

Eli cites turnover as an issue, which he believes is a direct result low salaries of direct care staff. He also notes that the waiting lists are a problem, along with the shift of family funding from federal to state once people with special needs are over the age of 21.

What’s your take on the video above? Let us know in the comments below.

h/t Autism Daddy

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12 Ways My Son With Autism Is Both Similar and Different From Other Teenagers

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My son Tommy has autism. He’s 14. I’ve noticed that he’s “different” from a lot of other kids his age, but there are also plenty of similarities as well.

1. Teenagers have a smell about them. Whether it’s body odor or too much cologne, some sort of scent is usually wafting from their bodies.

2. I don’t have to worry about my son sneaking out at night. He’s really big on rules. If I told him to be in by 10 p.m., he’ll be back by 10 p.m.

3. His moods can be all over the place like any teen. One minute he’ll be smiling. The next he’ll be glaring at me.

4. He won’t risk smoking. Or getting drunk. He cannot believe anyone would do these things. “Don’t they know their lungs will turn black? Why would anyone want to get drunk?” He’s just as appalled over drugs.

5. He spends hours on video games like many teenagers. When he emerges from his room, we sometimes start clapping. “You exist!” I’ll sometimes shout.

6. He might not be driving when he’s 16. He can panic when he gets overwhelmed, so he might need more time to cope with these feelings before he gets behind the wheel.

7. I’m not sure when he’ll have a girlfriend. He still struggles with understanding different emotions. I have faith there is a girl out there for him, though.

8. He’s not interested in sports. He never has been. He tried track in fifth grade and wasn’t a fan. He tries hard, but playing catch with him is tricky as he can have difficulty catching the ball or throwing it. He’ll try to be polite if someone in the family offers, but you can tell he’s not really enjoying himself. Football has always bored him.

boy wearing gray t-shirt and smiling
Amber’s son, Tommy.

9. He probably won’t be going to any school dances. There’s one coming up and I asked if he wanted to go. He was like, “No, thank you.”

10. He doesn’t walk around with earbuds in his ears all the time. He cannot stand things in his ears and he doesn’t care to listen to music at all hours of the day.

11. He eats like most teenagers. He never seems to be full. I once watched as he ate a footlong sub from Subway in five minutes. And he was still hungry. However, his diet isn’t like a lot of teenagers’: He doesn’t like soda. It’s too “spicy” for him. He doesn’t like chewy candy. He doesn’t like if you put cheese on his burger. He’d live on rolls if I allowed it.

12. He hates wearing shorts. He’s noticed that a lot of boys his age wear shorts, even if it’s freezing. He doesn’t comprehend this. If it’s below 72 degrees, he must be in a long-sleeved shirt. He also hates wearing flip-flops. Even if we’re going to the pool, he prefers to be in socks and shoes. When we go to the beach I can get him in flip-flops but only because he can’t stand the sand stuck in the socks.

Honestly, I’m happy he might not ever be like other teenagers. He is who he is.

He’s Tommy.

Follow this journey on Airing My Laundry.

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 Submit a Story page for more about our submission guidelines.

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Golf Pro Rickie Fowler Hits Hole-in-One, Raises $1 Million for Autism Foundation

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Professional golfer Rickie Fowler attended the Els for Autism Foundation’s charity tournament in Palm Beach Gardens, Florida, on Monday, and his hole-in-one shot raised $1 million for autism research.

Fellow pro Ernie Els and his wife Liezl have a son with autism, and they started the foundation in 2009. The $1 million Hole-In-One Challenge was sponsored by SAP and Ketel One Vodka, and the payout will come from an insurance policy, reported the Washington Post. Notables like Jack Nicklaus, Adam Scott, Keegan Bradley, Louis Oosthuizen, Luke Donald, Nick Price and Els himself previously attempted the shot, and Fowler was the 17th pro to take a swing at it.

The money will go to the Els for Autism Foundation and the Els Center of Excellence, according to SB Nation. After Fowler made the shot, Els picked him up and hugged him and later tweeted, “Will always remember this moment. Great support once again from pros. #humbled still can’t believe it!”

On Tuesday, Els posted the video below and added, “Woke up today thinking I dreamt about @RickieFowler making an ace for $1m for @ElsForAutism. Then I watched this…”

Fowler added a photo on Instagram and wrote, “Epic Monday! One of the coolest moments in my life making a hole in one earning $1,000,000 for @ernieelsgolf #ElsForAutism.”

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Thomas Morrow Writes 'The Autistic Turtle' to Explain Autism to His Friends

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Thomas Morrow’s friends always wanted to know about the toys on his desk and why he sat on a different type of chair. The third-grader realized his classmates didn’t quite understand autism — how he used the toys for sensory play and the chair felt more comfortable, and why sometimes, he seems to view things in a “different” way.

Instead of answering question after question, the 8-year-old set out to do something not many adults have done: write a book.

thomas holding his book

“Sometimes I am different than my class,” Thomas told The Mighty, “and I wanted them to understand autism.”

A year later, with the help of his grandmother, he published “The Autistic Turtle.”

In the book, an autistic turtle named Henry explains the ins and outs of autism to his friends. Thomas used the real names of his classmates, which he says thrilled them. He wants other autistic children who read the book to “know how different and cool we are.”

To write the book, Thomas would articulate how he saw the story and his grandmother would type it out. This all occurred while his grandmother received chemotherapy for stage 3 breast cancer.

“It was a complete blessing to watch the two of them work through the process,” Thomas’ mother, Tiffany Morrow, told The Mighty. “He would stand on his head, flip on the floor, pace and run all over the house and swing on her four poster bed, and she would sit in the middle on her laptop, and they would hash out the chapters one by one.”

Thomas received his autism diagnosis when he was 2 and a half years old. His mom says, at the time, she’d never have imagined him doing something like this. He proved preconceived notions wrong. Morrow says she’s a better person from raising a neurodiverse son. She hopes parents new to this journey will ultimately accept the diagnosis.

“Embrace the diagnosis, don’t fight it,” Morrow said. “I know that’s hard to hear that your child is not ‘typical,’ but dive in deep and take off running.”

the morrow family

 

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Why I Talk About My Daughter’s Autism With Others Every Day

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Autism Awareness Month is less than a month away, and talk of autism will be filling the air. My social news feed is already blowing up with reminders to either start a walkathon, raise money for therapies and Light It Up Blue, all in the name of autism awareness.

Granted, it’s imperative to talk about autism and do these things throughout the month of April, but what about now or after the blue lights fade? You see, I am one of those parents who constantly talks about her daughter’s autism diagnosis to anyone willing to listen. I do this on a daily basis. Why? Why in the world would I share something so personal with strangers who could potentially use my words against me?

Well, I’ll tell you why — but first, I get it. I understand why some families are very selective as to who they share their child’s diagnosis with, mainly due to preconceived labels and judgments.

If someone wants to keep my daughter or family in a label bubble or decides to not associate themselves with us after learning my daughter Autumn has autism, guess what? That’s their problem. That’s on them. Also, what kind of friend would that be? Honestly, would anyone want to be friends with people who are afraid of autism or anything else that may not fit into that perfect box image? I didn’t think so. Plus, I really don’t care what people think of me and my family. If they want to judge us or not associate with us because we’re a special needs family, oh well. Their loss. Our gain.

In addition, how are we supposed to support a world full of inclusion, awareness and acceptance if we don’t talk about the diagnosis, or if we are so afraid to let the cat out of the bag that it holds not just our families back from being able to try new things, but hurts the child and/or individual we are advocating for?

I believe we as parents and caregivers are responsible for creating a world where our children have every opportunity to excel. By talking about the diagnosis and then educating others about autism (or any disability for that matter), we can encourage more sensitivity and understanding. We can begin to break down barriers and remove stigmas one step at a time. We can open the eyes and minds of others who may now go throughout their days being less judgmental towards that parent with the screaming child in the store or down the street. We can open the pathways for love and acceptance as well as kindness by sharing our journeys.

I feel this is how we can change the world. It’s a 365-day-a-year ideal, not just promoting this belief throughout one month.

girl looking at aquarium tank
Patricia’s daughter, Autumn.

Lastly, I talk about my daughter’s diagnosis because I’m proud of her and all that she is. Autism is a huge part of her life and her everyday challenges as well as triumphs, but it isn’t our entire world. I want people to see that people with autism are more than autism. That autism isn’t a one-size-fits-all glove like many people may assume. Like a beautiful snowflake, autism can be just as unique.

So the next time a stranger starts asking you questions about your child, don’t be afraid and share with them their diagnosis. You might even make a new friend that day, or at least you did your part in promoting awareness, acceptance and love, all for the greater good of making this world a more sensitive and caring place.

Follow this journey at Raising a Butterfly: Autumn’s Journey.

 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.

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