Why Raising a Child With Autism Is a Lot Like Practicing Yoga

16
16

I like to use exercise as an outlet for some of my daily stress. While most days, I just have time to push my little guy’s stroller around the neighborhood, I love to practice yoga. Of course, I don’t get to practice it nearly as much as I’d like to, but I always feel great after I get the chance. Sometimes I take classes, and sometimes I get to take 10 minutes (in a row!) to get quiet, stretch out in the living room and even try a new pose or push myself further in another one. It recently hit me — mid pigeon pose — that raising a child with autism is a lot like practicing yoga.

First of all, no one masters yoga, that’s why it’s called a practice. That’s how I feel about motherhood in general — not just parenting a child with a disability. Sometimes I need to take pressure off myself — the pressure that I should have this down by now and be able to cope better during the difficult hours or days or weeks. My daughter is 10, so I have been at this autism parenting thing for a while, and it’s a constant practice for me.

I believe yoga and autism parenting both require four things: flexibility, strength, the willingness to modify and the understanding that everything is temporary.

Most people who practice yoga don’t start out standing on their heads or even being able to touch their toes in a forward fold. It takes time and patience. Flexibility isn’t something that comes naturally to us all. Little by little, with practice, flexibility can grow.

No one is expected to understand everything about autism or even about our own children. We bend and flex and change and grow alongside our children. I’ve had countless beautiful and special moments raising my daughter, though it’s been hard and painful at times. It’s hard to see my child deal with challenges; it’s hard to see other families not experience all that my family has had to gone through; it’s hard not knowing how to help my child or make her feel better in her own skin. It’s hard. There’s not much room for weakness.

On my yoga mat, I’m always reminded of my strength. Feeling like I can hold a pose past what I thought was my “edge” or balancing while twisted up and on only one foot proves to me that I’m stronger than I think I am. When I feel strong, I’m always more patient because I believe in myself and in the process. Taking the strength I feel while I’m on my mat out into my world off the mat is always my focus in yoga; that’s always the goal for me.

Being willing to modify is the name of the game in raising a child on the spectrum. You can be all set and ready to walk out the door to an event you’d been planning on for weeks, and boom, a meltdown occurs. Change in plans! Raising a child with autism requires a willingness to modify, to go with the flow and to be OK with expectations not being met. Modification is not failure, it’s simply an adjustment and adaptation. A headstand using the wall for support or a headstand in the middle of the room is still called a headstand.

And finally, yoga and autism parenting both require the understanding that everything is temporary. Meltdowns are temporary. Behavioral flare-ups are temporary. Periods of plateau in progress are temporary. Sometimes even regressions are temporary. I can move my body into some very strange positions and be just fine and comfortable — even if for just 10 seconds! — while others are incredibly unbearable and uncomfortable. Just when my body starts screaming to get out of a pose, it’s time to change positions. It’s been invaluable for me to learn that if something doesn’t feel right, it’s a temporary feeling. I don’t have to be stuck there. I can modify my position, my attitude, my behavior. Of course, just because I know I can doesn’t mean it comes easily. It’s a practice.

All these things — flexibility, strength, willingness to modify and knowing it’s all temporary — increase over time. Sometimes quickly, sometimes slowly. Practicing yoga and raising a child on the spectrum take perseverance. We fall eight times and get up nine. We keep practicing over and over and over, and sometimes, if we never give up, we can totally nail a pose!

Dani Gillman the mighty.1-001

A version of this post originally appeared on Birdhouse for Autism.

16
16

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

A Dad’s Response to ‘How Can I Minimize My Chances of Having a Disabled Child?’

691
691

When a 16-year-old asked a hypothetical question reflecting his terror at the thought of having a disabled child, one father gave him a not-at-all hypothetical response.

How can I minimize my chances of having a disabled child?” the user asked on Quora.com, a question-and-answer website. He followed up:

I don’t want an autistic or Downs child, for example. I am planning on having a strong career in computer science or medicine, and I want to marry someone who is doing the same and have kids some day, but I’m terrified that they’ll be severely disabled, and my wife won’t agree to abort the fetus. I (maybe naively) believe in love, so I wouldn’t necessarily be able to leave my wife if I truly loved her and she refused to abort.

Note that this is purely hypothetical. I am only 16 years old at the moment, but I have thought about this a lot.

Quora offers users the ability to both respond to questions and “upvote” responses they like. In this case, the response with the most amount of votes came from Matthew Might, a professor of computer science and medicine who’s also a dad to a boy with disabilities. Might’s been in the news before — in July 2014, The New Yorker published his piece, “One of a Kind: What do you do if your child has a condition that is new to science?” detailing his family’s search for another patient with the genetic disorder his son has.

In response to this teen’s question, Might told a shortened version of his family’s powerful story (below). In it, he discusses the success he’s achieved in computer science — not in spite of, but because of his son.

“I am grateful to my ‘disabled child’ for teaching me one of life’s most valuable lessons: the importance of using our hauntingly brief time on this planet to do the things that matter, the things that will make a difference,” Might wrote, “the things that are inspired by love and guided by knowledge.”

Read Might’s full response below:

Read Matthew Might‘s answer to How can I minimize my chances of having a disabled child? on Quora

691
691
JOIN THE CONVERSATION

What I Wanted to Tell the Grocery Clerks About My Nonverbal Son

521
521

Among other things, my son is 4, very tall, autistic, handsome, affectionate and nonverbal. His sweet smile and fierce hugs endear him to everyone he meets. His autism is a full-time job — most days he’s out the door by 9 in the morning and doesn’t get a break until after 4 p.m. I act as the dutiful shuttle bus driver for school and all of his therapy appointments.

As a result of this packed schedule, we frequently end up running errands while in transit from one place to another. Inevitably, the cashier or someone in line will comment about how quiet and well-behaved my son is. Often, it’s someone apologizing for their own child’s behavior while thinking I’m some kind of disciplinary super mom. They imagine a halo over my gorgeous blonde little boy’s head as he stands there silently, looking at the floor, holding my hand.

Occasionally, they try to talk to him but he’ll turn his head away. Then comes the comment, “Oh, he’s shy, huh?” Sometimes I say yes, because he can be. Sometimes I’ll point out that talking to strangers isn’t a good idea. Sometimes I offer a smile and remain as silent as my son. It isn’t that I’m embarrassed of him or his diagnosis. I try to think what my son would want — would he want all these people knowing? Would it make it better or would it just make him feel even more isolated and different? He offers no explanation so usually I don’t either.

There was one exchange, though, that I will never forget. We were at a packed grocery store right before Christmas. The bagger and cashier were complaining because their kids were going on and on about what they wanted for gifts and had no respect for the meaning of the holiday. I fought back tears as I put my items on the belt. My son was sitting in the cart, his eyes downcast to avoid the bright fluorescent lights. He had my phone and was listening to music to help drown out the overstimulating sounds of the conveyor belt and the beeping of the register. The cashier glanced at me, looking for some commiseration. I couldn’t meet her gaze. I felt embarrassed because I never have any idea what my son wants for Christmas. As with every other holiday and occasion, I have to guess. Sometimes I guess right and sometimes I don’t.

I wanted to tell them how lucky they were that they could hear their children’s voices. I wanted to remind them what a gift it is to be able to know, for certain, what their children need at any given time. For the ability to be told what their children like for dinner or what they wish for on their birthday. My body started to shake with all the unspoken words threatening to pour out of me. I wanted to tell them the greatest Christmas gift I could receive would be for my son to tell me that he loved me. I would give anything to know what he was hoping for on Christmas morning, so he could feel like a regular kid and get something he wanted. I said nothing because I knew telling them all this wouldn’t change anything, but after it was time to leave, I sat in my car and cried.

My son may never talk. I have made peace with that. However, I’m going to continue to find a way for him to communicate not just for his needs, but also his wants. Because every child deserves to receive a gift that they’ll love.

Andrea Manson the mighty.2-001

521
521
TOPICS
JOIN THE CONVERSATION

How I Explained Epilepsy to My Son With Autism

328
328

“What’s a seizure, Mommy? How did I have a seizure?”

He doesn’t remember what happened, of course. Since he also has autism, he doesn’t ask just once or twice. The questions come all day long, week after week.

“When will I have another seizure?”

“Am I going to have another seizure now?”

“How many more seizures will I have?”

“What does epilepsy mean?”

“What happens when I have a seizure?”

“Why do we have to take a break now?

“What are you worried about, Mommy?”

“Are you afraid that I’m going to have another seizure now?”

The truth is that the epilepsy diagnosis wasn’t a surprise. For ten years, I asked doctors about the staring episodes, the lack of short-term memory, the uncontrollable laughter, the unusual blinking and eye-rolling and the sudden falls from his bicycle. The EEGs revealed no seizure activity. I knew that untreated absence seizures in childhood can develop into grand mal seizures in puberty. I knew that 20 to 40 percent of people with an autism diagnosis also have epilepsy. But knowing is not the same as holding my convulsing child.

In the world of autism, we break down every task and concept into smaller parts, then model, teach and re-teach until it becomes habit. I use the same method to address my son’s questions. This is his story; he wants to understand. And so I explain it to him, one piece at a time.

“All people have electricity inside their brains. It’s what makes us alive. When the electricity stops, we die. Some people with autism, like you, have extra electricity in certain parts of their brains. When your body started changing from a boy into a man, the electricity grew, too.”

“When you were on the field trip at the park, the electricity became too much and it made you faint. You weren’t awake — that’s why you don’t remember. You threw up and you fell to the ground. Your body was stiff and shaking.”

OLYMPUS DIGITAL CAMERA “What’s important to know is that you were with people who love you and knew how to take care of you. Mrs. B was with you when you fell. She made sure you did not hurt your head. A nurse was jogging by with her baby, and she stopped to help. An off-duty EMT saw you fall and came running over. Your history teacher found me at the picnic shelter, and soon I was with you, too. Mr. V saw you and wanted to help; Mr. L got to the hospital before the ambulance did, and he waited until he could see that you were OK. Father Joseph visited you in the hospital and gave you a blessing. You were surrounded by love the whole time.”

“During your other seizures, you were with Mom or Dad, and we took care of you the way Dr. F taught us. We will help you stay healthy and strong. Dr. F said you can swim if you have a life vest and stay with a grown-up. You can ride a horse or a bike if you wear a helmet and stay with a grown-up. You can climb if your harness is secured. We have to take breaks to make sure you do not become too tired. We don’t know when or if you will have more seizures. No one can see the future.  When you cannot be strong, we will be strong for you.”

This is his story, and he gave me permission to share it with you.

Do you have a story about your experience with epilepsy? Please send it [email protected] include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

328
328
TOPICS
JOIN THE CONVERSATION

The Important Reason Farmers All Over the World Are Taking Tractor Selfies

846
846

Farmers are posing in front of their tractors for a cause that doesn’t usually go hand in hand with heavy machinery — suicide prevention. Using the hashtag #TractorSelfie4Rob, farmers are using their selfies to bring awareness to suicide among the farming community and raise money for Papyrus, a suicide prevention charity in the U.K.

Alex Paske started the campaign in memory of Rob Chapman, a farmer from Thurning, Northamptonshire, England, who was 29 when he took his own life last year, according to FG Insight.

 

For decades, farmers across the country have been dying by suicide at higher rates than the general population, according to a Newsweek cover story from last year. In what the outlet called an “international crisis,” Newsweek said the rate of farmer suicides in the United States is almost two times the rate of the general population, and in the U.K., one farmer a week dies by suicide.

Farming can be an isolated job especially during the summer, when farmers can be sat alone in tractors for hours on end, allowing their thoughts to run away with them,” Paske told FG Insight.

Now, farmers are taking to Twitter and Facebook with their tractors to spread the word that it’s OK to seek help. They’re then encouraged to make a donation to Papyrus by texting “RFTG64” with the amount they want to donate to 70070.

So far the campaign has raised almost 3,000 euros (or about $3,300). There will also be a Tractor Run in December with a 5-euro entrance fee. All the proceeds will go to Papyrus.

 

If you’re in the United States, you can donate online by clicking here.

 

846
846
TOPICS
JOIN THE CONVERSATION

To the Kindergarten Class of My Child With Special Needs

973
973

I have never walked this specific path before. I have taken kids to school on their first day of kindergarten and cried after drop off. I have been nervous for new adventures, but known in my heart they would love it. But I have never had to navigate public school with a child who had special needs.

Our time at our daughter Reese’s last school was special because the program was for children with disabilities. Many types of needs and diagnoses could get you into the program, and half of the day was devoted to inclusion into mainstream classes. I really thought the transition for me would be much easier than it is.

I am three weeks away from sending Reese into a classroom that is 100 percent mainstream. She’s absolutely ready for this. She knows all of her letters, the sounds of letters, her numbers and how to add them. She’s full of jokes and smiles, she can run around and play with her friends and she loves to be silly.

So here I am writing an open letter to her teachers and friends. Friends who are too young to even read, and teachers she may have in the immediate future or years to come. And to all teachers and friends of those who have a new kid in class who is just has something extra special and different about them. Please keep these five things in mind when you’re with my daughter:

1. Be patient.

It may take Reese an extra second to answer your question, but it’s there. She’s just too busy thinking about whether her answer is correct or not. Remind her she does, in fact, know the answer so she can just say it. Also, she may forget that same answer tomorrow when you ask. She knows it but just can’t get to it as quickly. But man, oh man, she can’t wait to see your eyes light up when she gets the answers correct. If you don’t understand something she says, try again later and you will. She has so much to say if you just wait for it.

2. Be safe.

This is all overwhelming and new — just like it is for a lot of kindergartners. But for Reese, she doesn’t really understand how new or different this is from previous years. School was a safe place for her. It was a place where all of her teachers were her best friends and her classmates were just like her.

She’ll see kindergarten the same way, so please help her remember that it is, as always, the safest and best place to spend your day. Give her a hug when she’s sad and don’t just say that I’ll be coming back at the end of the day. Help her up when she falls instead of telling her to brush it off. Sometimes being a safety net is just as important as teaching those life lessons. She just wants a cuddle once in a while, but teaching her a lesson on getting out of your seat will break her spirit for a week. She is a rule follower and will never have her “name on the board” or “points taken away” or anything like that. She can’t wait to help you as soon as she trusts that you’ll let her. This is what happens when kids spend a lot of time at the hospital. As they grow up, they have to learn to trust that the people in the room will be the same ones who will keep them safe from harm.

3. Be kind.

Reese’s AFO (ankle foot orthoses) boot has a cheetah print. That’s pretty cool, right? It helps her so her toe doesn’t drop when she’s trying to walk. She also can’t use her right hand that well. We call it “bad arm,” and it does what it needs to do and learns more every day. Her front teeth are gone because some of her meds ruined them. But who wants to brush that many teeth anyway? Reese’s hair is short and awkward, because she was basically bald this time last year. I knew she’d start kindergarten with a cute bob. She’s just like you. She wants to play with you and make you laugh even if she’s the size of a 3-year-old.

4. Be diligent.

It takes Reese a few more minutes to get things done in the bathroom. I’ll try to keep her in short dresses so she doesn’t have to deal with leggings often. But please keep an eye on how long she’s been in there. It’s possible she’s just trying to get her undies into the back of her leggings and “bad arm” is being a pain. Maybe send a friend in to get her. She will have an aide on the playground, at first, to teach her the boundaries, but please try to remind her in other locations to “step” because she only has one eye to catch that drop. Eventually, she’ll remember where all the steps are, but she just needs you to be her extra eye for a bit.

5. Be you.

Reese can’t wait to get to know her new friends and teachers. She loves so fiercely, and I can’t wait for her new school to get to know her like the last one did. I want to cry when she graduates kindergarten because I loved everyone so much. I want to miss her daily because she just loves school so much and can’t wait to go the next day. I would never tell someone how to do their job or be someone they’re not, but it’s also important to help people know who Reese is. And she’s just so many things that are worth waiting for.

Next stop: kindergarten.

Amanda Skelte the mighty.1-001

Follow this journey on This Year’s Love Will Last

973
973
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.