dad and son sitting near the lake

20 Confessions of an Autism Dad

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dad and son sitting near the lake We are tough. We are strong. We have it all together.

We are so full of it…

Here are my 20 confessions as an autism dad:

1. I have myself convinced that taking a big bite out of my son’s before-school donut before I give it to him is for his own health.

2. Sometimes I’m secretly happy he wants to leave parties so I have an excuse to leave, sit in the car and play Plants vs. Zombies on my iPhone.

3. Sometimes, for brownie points, I spray some Clorox on the kitchen counter right before my wife gets home from work so it smells like I was cleaning the house.

4. My wife bought me a robot to vacuum the pool because I never have time to vacuum it myself. I just spent a half-hour standing poolside and watching it work. Let that sink in a minute.

5. It’s becoming clear to me, for the rest of our lives, the bulk of the arguments I will have with my son will revolve around whether or not he has to go to the bathroom.

6. I’m seriously craving Chuck E. Cheese pizza for lunch.

7. You realize you might’ve gone overboard pumping up the whole Tooth Fairy experience when you catch your kid standing in front of a mirror with a bloody tissue trying to yank one of the suckers out of his head.

8. I’ve actually bought myself a donut as a reward for successfully navigating a social interaction involving small talk.

9. Sometimes I sit down sideways on the edge of my chair in front of my laptop with the intention of just checking email really quickly. Then, 20 minutes later, the throbbing pain through my twisted spine reminds me of my complete lack of self-discipline.

10. None of us really know what the hell we’re doing. Once you figure that out, everything becomes so much easier.

11. I didn’t even entertain the thought of waking him up to brush his teeth when he fell asleep playing in his bed at 7:30 p.m. He ate an apple… that’s like nature’s dental floss, right?

12. “He forgot his octopus”: The only explanation I could muster in response to my neighbor’s befuddled expression as my kid went sprinting out to the pool covered in bath bubbles.

13. I was just vacuuming the floors (because that’s how I roll) and had to pause to admire all the beautiful pictures of our family we’ve collected over the years. It took a while since they’re all stacked behind our couch in shattered and demolished picture frames.

14. My son got a little over-stimulated during a family party at our house and asked to go take a bath. I feigned disappointment and took the bullet… and enjoyed my beer quietly in the bathroom with my little soldier.

15. Whenever my wife makes me fold laundry, I always fold the towels first because they’re the easiest and make the pile go down the fastest. Then I get “distracted” and leave the small stuff for her.

16. Nothing tests your manhood better than your kid using perfect word structure to demand you belt out the Barney “I Love You” song on a crowded elevator.

17. I literally just spun three times in a circle in my living room trying to do eight different things at one time. My brain is oatmeal.

18. He just dozed off watching “Jay Jay the Jet Plane.” I’m currently battling the pleasure of an unexpected afternoon nap with the mind-numbing torture of listening to the “Jay Jay” theme song on a loop. But I dare not move.

19. I don’t even know what the stuff does, but sometimes I put my wife’s conditioner in my hair to prolong the peace and quiet of a shower.

20. I don’t pray enough. But when I do, it’s usually for the strength and discipline not to throw it all away and completely lose my mind if/when someone mistreats or disrespects my son.

 

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5 Ways to Live a Good Life According to a Little Girl With Autism

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My daughter, Kate, seems to be free of the issues plaguing many of us, such as insecurity, fearfulness and doubt. They’re not a part of her world, and I wanted to know why. I learned a few lessons about living a good life based on the way she lives hers.

1. Hug people and make them smile. 

Kate, loves to give hugs to people whether it’s appropriate or not. She will crawl into the lap of a stranger if you let her. But you know what? They always smile. They always instantly feel happier once receiving a Kate hug. So this lesson boils down to: hug people (when they want to be hugged) and make them smile.

2. Don’t judge others.

Kate likes every single person she meets. She doesn’t care what you’re wearing or what you do. She doesn’t care if you have money or not. She doesn’t care if you have a disability or if you’ve made mistakes. She’s happy to be in your company. She routinely greets strangers with a big “Hi” as we walk around town. She’s an equal opportunity lover of people. Lesson two: you should be too.

3. Be sincere.

Kate never lies. She never pretends to be something she is not. One of the myths of autism is that people with autism can’t tell a lie, and I do not want to perpetuate that myth with this lesson, but at the moment she’s as authentic as they come. For example, you can ask, “Kate, did you put your banana between the couch cushions?” and you will get a “Yes, Mama” and a huge smile. You will always know where you stand with Kate. Lesson three: be genuine to yourself and others.

4. Give it your all.

Kate doesn’t hold back. No matter the situation, she gives all of her energy and effort to what she’s doing. To Kate, there’s nothing she can’t do. She can tackle the gymnastic equipment without trepidation. She can (try to) jump off the boat and go for a swim (while it’s moving!). She is fearless (which can be stressful for us, but a quality we understand to be freeing). Lesson four: don’t be afraid to go all out, whatever the task.

5. Live in the moment.

Kate doesn’t regret yesterday or worry about tomorrow. She lives for today. She doesn’t hold a grudge or dwell on the past. She doesn’t fret about what will happen in the future. She’s present in the moment. She doesn’t live in her head like some of us get caught up doing. Lesson five: enjoy the moment you’re in. Be present and be mindful.

A version of this post originally appeared on Go Team Kate.

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To the Girl at Target Whose Mom Apologized to Me

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I wrote this post twice, but something about it was off. So I rewrote it when I realized the first time I was talking to the wrong person.

At Target, I stood behind a lady and her daughter. Her daughter was bouncing and talking to me. She seemed hyper, but not too out of the ordinary. Her mom then said, “Sorry.” She apologized and explained that her daughter has autism.

This hit me. It hurt my heart. Not because the little girl was autistic, but because her mom was saying sorry.

When I first started writing this, I was talking to the mom. Now, I want to write this to the little girl:

You are awesome. What you are doing, this hyperness, is awesome. Find ways to use this hyperness for something you really want or need. I use mine to clean and to write. Don’t find one passion, find a bunch of them. Make them all across the board and be random. You aren’t a mistake — you are a fantastically strange human, but that’s a good thing. We need you in this world to make it better. You might wonder why I’m telling you all this. “How do you know?” you might ask.

I have the answers to these questions. I’m autistic, like you. I have a disorder in my brain that for some reason makes me different from the rest of the world. Now your mom, she is doing her best, but she is just saying sorry because she because she might not know you understand her. But I saw your eyes. You got it. And I know if you are like me, you’re going to go over that moment and try to figure out what you did wrong.

You didn’t do anything wrong. Your brain is just different, but you’re fantastic. You’re fantastic because you can think differently and because you do things in different ways. You can change the world, you can and will. Just keep trying and don’t give up on yourself.

I know people will look at you weird, but when you have an overload of emotions just let it come. Get it out, cry and scream, and let it be. Let yourself feel the emotion.   

Your parents and family won’t always understand you, but try not to let that bother you. Let yourself be OK. Try to find what makes you happy and what you’re passionate about. For example, I love taking photos. I love older people and children. I like the color purple, but don’t wear it a lot. I love things and I hate things. I have a list in my head. 

When people talk like you’re not there, just act like they are talking about a panda who lives on the moon. Believe me, people will talk like you aren’t there. Be happy with yourself. I like to tell myself that no matter what, I can’t do anything to change the way I am, so I accept who I am and embrace it.

Don’t let everyone tell you how weird you are or how they can cure you. I know things will get hard, but that’s OK. Keep pressing on. Keep going. You are fantastic, you are funny, and you make everything better.

A version of this post originally appeared on ShayWeasel.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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.

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My Son Did a Great Job at Airport Security. But This Guard Did Not.

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My son, DC, loves to travel. He loves hotel rooms. He even loves to fly.

DC has flown quite a bit, but this will be his longest flight so far. Security is always a bit overwhelming for him, but he gets through it. As many times as he has flown before, he never had to go through the body scan until our trip in October to North Carolina’s Mountain of OZ.

There were a few times over the years when the security lines were not very busy and I wanted him to go through so I could explain it to him without holding up the line. But as soon as I mentioned “autism,” they whisked him though the walk-through before I had the chance to finish my sentence. That was fine, but I really wanted him to do it once in case there was ever a time that we weren’t given the choice. Of course I do explain it all to him while we’re in line and make him watch what everyone else is doing, just in case. But no amount of explaining can take the place of doing.

Heading home from the Charlotte airport — it happened. He had to go through the body scan. As always, I explained and showed him what he had to do while waiting in line. DC’s dad, Doug, went through first and waited on the other side. I was behind DC. The security people saw us giving him instructions and the woman let me get up close so I can show him exactly what to do. He put his feet on the foot prints and raised his arms and waited for them to tell him he was finished. He did a great job.

He turned to walk out of the body scan when the guard on the other side (near where Doug waited) grabbed DC with absolutely no notice and without saying a word and searched him! It happened too fast for either of us to react. DC was now screaming, “Not all right! Not all right!” while I was trying to get through the scan to get to him. Both security guards saw us giving him directions. I told the woman he has autism. I thought that they “got it.” There was no way they couldn’t see that maybe they should approach with care or at least say something to him before he was grabbed and patted down.

I finally made it to the other side and DC was still yelling and really could not function. He couldn’t get his shoes and other items off of the conveyor belt. He just continued to yell, fists in the air: “Not all right!” Now all of the other security people in the area were watching as I tried to calm him down. I prayed that none of them would say anything or try to approach him and make matters worse. This went on for a good long while. I had him sit down and tried to explain to him that he did everything correctly. The man should not have grabbed him without letting him know first. This was not his fault and he had every right to be upset. Eventually he did calm down and there were no aftershocks on the flight home.

People do at times overlook him completely and direct their questions to me instead of talking to him. I always repeat the question to him and make sure he gives the person the answer himself. I mentioned earlier that I thought that there was no way on earth that the security guards did not understand even before I explained that DC has autism. Now as I think about it, I wonder if they actually did understand and decided that due to his autism, they did not really need to talk to DC directly at all.

And that is a problem.

A version of this post originally appeared on Taking It a Step at a Time – Autism.

CLARIFICATION: The image used on this story is from Thinkstock Photos. Vickie C.‘s son is an adult with autism. Hi, Mighty community. We sincerely apologize for the confusion. As Vickie C. explained in her own comment, “They did not search a child or make a child go through the body scan. They also did not treat my adult son with respect.”

The Mighty wants to hear more about your travel experiences as parents of children with special needs. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Which Airline Is Best at Accommodating Passengers With Autism?

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How are airlines accommodating customers with an autism spectrum disorder? We decided to find out.

The Mighty researched six major airlines’ online policies and contacted customer service representatives with further questions via phone and/or email. We asked about previous accommodations they’d made, whether or not they allow passengers with autism to board the plane early, what types of inflight support they offer and how far in advance families should tell the airline about any specific needs.

Based on our research, JetBlue appears to be the most accommodating. Check out the details on all six airlines below. We also know the provided information doesn’t always tell the whole story. If you’ve flown any of these airlines with a loved one with autism, please tell us about your experience in the comment section below.

United Airlines

Is pre-boarding available for passengers with autism and their families?

Yes.

Is there information about traveling with a person with autism available online?

No. The airline offers generalized information about traveling with a physical disability, but there is nothing specifically mentioning autism. The Mighty called a United Airlines customer service representative, who was kind and helpful. The airline has not yet responded to our email inquiry.

Are there any inflight accommodations?

The airline will always make sure people with autism are able to sit with their families, according to the United Airlines customer service agent. If the person needs to change seats mid-flight, the flight attendants will do their best to accommodate the request. If other passengers have boarded the plane, however, they cannot guarantee they will be able to switch seating.

How soon should you let the airline know your circumstances? 

The agent recommended families traveling with a person with autism let the airline know of any special circumstances when making the flight reservation. It’s also a good idea to let the gate personnel know of any special needs and requests upon arriving at the airport.

Any additional information?

The airline will do its best to accommodate any special requests as long as they are made in advance — it offers assistance on an individual basis. In the past, United has allowed children with autism and their parents to board a parked, empty plane so they can get used to it well before takeoff time.

If a meal is requested mid-flight for a person with autism, the airline will do its best to accommodate them if the flight has a meal service, another customer service representative told The Mighty. However, most domestic flights no longer serve meals, and if there’s no food service onboard, they cannot provide a meal.

JetBlue

Is pre-boarding available for passengers with autism and their families?

Yes. The airline also offers silent boarding before pre-boarding to give the person plenty of time to feel settled before the rest of the passengers board, a customer service representative told The Mighty.

Is there information about traveling with a person with autism available online?

Yes. JetBlue explains the services it offers customers with cognitive disabilities, and it includes a section about passengers with autism. The airline also responded quickly to our phone and email inquiries. JetBlue customer service agents are available by phone anytime.

Are there any inflight accommodations?

JetBlue offers seats with extra space set aside in advance for people with disabilities at no extra charge, a customer service representative told The Mighty over the phone. A person with autism can sit in one of these seats with a companion traveler.

How soon should you let the airline know your circumstances? 

JetBlue offers assistance on an individual basis, so be sure to call with any specific questions at least one full day before your flight. They also recommend letting the gate personnel and flight crew know about any special needs upon arrival to the airport.

Any additional information?

If you and your loved one with autism would like to practice boarding the plane before the actual boarding starts, ask a customer service representative more than a few days before the flight. JetBlue has allowed children with autism and their families to explore a parked, empty plane prior to takeoff.

Virgin America

Is pre-boarding available for passengers with autism and their families?

Yes.

Is there information about traveling with a person with autism available online?

No. The Virgin America website says it makes accommodations for passengers with disabilities, but there is no further information available. We were unable to contact the airline’s disability customer service representatives by phone, but they responded quickly over email.

Are there any inflight accommodations?

The airline will do whatever it can to ensure people with autism and their loved ones have their choice of seating, a customer service representative told The Mighty via email. Children with autism and their parents will always sit together. If your family needs to change seats midway through the flight, the flight crew will do their best to reseat you (although there are no guarantees). Virgin America makes its accommodations on a case-by-case basis, so if you let them know what you need well in advance, they will do whatever they can to make the flight more comfortable.

How soon should you let the airline know your circumstances? 

It’s best to indicate that your family will need specific services as soon as you make the reservation, but it also helps to call and talk with a flight agent a few days in advance as well.

Any additional information?

The airline may be able to offer people with autism and their families to tour the plane before boarding. Be sure to let the airline personnel know well in advance, and let a flight agent know your circumstances when you arrive at the airport on flight day.

Southwest Airlines

Is pre-boarding available for passengers with autism and their families?

Yes.

Is there information about traveling with a person with autism available online?

No. Southwest indicates the services it does and does not provide passengers with cognitive and developmental disabilities, but it doesn’t mention autism specifically. We called the airline’s customer service number to inquire further, and the representative we spoke with was knowledgable and helpful. Southwest customer service is available by phone 24 hours a day.

Are there any inflight accommodations?

If you’re sitting on the plane and your loved one suddenly needs to switch seats for whatever reason, let a flight attendant know, and they will make an announcement over the plane’s PA system asking if other passengers can accommodate the request. The customer service representative told us flight attendants will always be willing to work with customers on whatever they need if something else comes up.

How soon should you let the airline know your circumstances? 

Families should arrive at the gate 45 minutes before takeoff time (10 minutes earlier than other passengers) in time to pre board. There is no need to call ahead to make special arrangements.

Any additional information?

Make your flight reservation as you normally would. The airline’s representative told us autism isn’t one of the disabilities you can indicate when you make your reservation online, but you can pre board at any airport — no need to bring a doctor’s letter or any other form of proof.

Delta

Is pre-boarding available for passengers with autism and their families?

Yes.

Is there information about traveling with a person with autism available online?

No. Delta’s website offers general information about what the airline offers travelers with disabilities, but it does not mention autism. The website lists a specific number for disability assistance, and a customer service representative was immediately available and helpful when we reached out.

Are there any inflight accommodations?

Delta assigns seating in advance, but the airline’s customer service representative told us you’re always able to ask a flight attendant if you can move seats mid-flight. They cannot guarantee anything, but they will do their best to reseat you.

How soon should you let the airline know your circumstances? 

The Delta customer service representative told us it’s best to call Delta and let them know about any special needs when you first make your flight reservation. Airline personnel will let the gate personnel know in advance that a person with autism will be onboard the flight. Let the flight crew know about any special needs when you board the plane.

The Delta representative also recommended that families traveling with a loved one with autism allow one additional hour at the airport before departure time to ensure all potential needs are met.

Any additional information?

Delta is working on a system where the gate personnel let the flight crew know about passengers with autism well before flight time, but this has not been fully implemented yet.

American Airlines

Is pre-boarding available for passengers with autism and their families?

Yes.

Is there information about traveling with a person with autism available online?

No. The American Airlines website gives instructions on how to contact customer service representatives about traveling with a disability. We contacted the airline’s customer service number and spoke with a representative.

Are there any in-flight accommodations?

American Airlines told us it reserves priority seating for passengers with disabilities and their families in advance. If you would like to take advantage of priority seating, let the airline personnel know when you make the reservation.

How soon should you let the airline know your circumstances? 

The American Airlines customer service representative recommended that families traveling with a loved one with autism who need specific services let the airline know at the time the reservation is made. The airline will do its best to make last-minute accommodations, but the more notice you give, the more likely they will be able to help. They recommend additionally letting a flight agent know about any special needs when you arrive at the airport.

Any additional information?

The American Airlines website offers a “Disability Assistance Request” where you can specify that you are traveling with a person with autism and explain what types of services you will need on flight day. You can file this request during or after you make your flight reservation.

If you or a loved one has autism, we want to know the following: Have you had a good or bad experience with any of these airlines? Let us know in the comment section below.

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The Hardest Part About Traveling With Autism

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Last winter my husband Joe and I took five red suitcases, four messy boys and one pink girl on a Caribbean vacation. As soon as our second son, Jack, climbed into the shuttle to the airport, he made an announcement to the driver: “None of us. Smoke tobacco.”

The driver looked back at me in the dim light of the van. It was 3:30 a.m., and I imagine this was not the sort of conversation he expected to have with a 10-year old.

I smiled weakly. “Uh, he’s right. None of us — we don’t use tobacco.”

Taking Jack and his autism on vacation is like bringing a fragile, anxious little fish out of a tiny backyard pond and throwing him into the ocean. You just keep your fingers crossed that he can handle a different schedule and change in scenery without getting swept away in a riptide of tantrums, meltdowns and anxiety.

Right this minute, Jack is obsessed with Oreos, something called a Bamboozle challenge, all of Disney’s evil characters, and, because of fifth-grade health class, the dangers of tobacco.

Oh, and lately he licks things, like public signs and handrails and my jacket sleeve and once in a while, the walls. I have no idea why.

So, as you can imagine, between the licking and the tantrums and the tobacco, a trip with Jack can be all sorts of crazy fun. But he actually loves to travel. He loves to see new places and figure out the best way to get there. He loves to try and guess just how blue the water is in the Caribbean.

“Blue. How blue is the ocean. Tell me now how blue.”

That is, he loves to travel as long as we let him pack his 14 Chapsticks and his beloved stuffed bunny and his pillow with the license plates printed on it and countless other useless items. For this trip, we had to talk him out of packing his humidifier. Basically, he needs to bring his inside world whenever he ventures outside. This is what makes him comfortable.

We got to the airport around 4:30 in the morning. Joe and I exchanged uneasy glances when we saw how crowded it was and the long line to check in for the flight.

As we moved our luggage and made our way onto the line, Jack fell. He began to scream the loudest, rawest, most guttural scream, and a hush fell over the entire terminal. Hundreds of people watched as Joe and I tried to soothe our flapping, flailing son.

“Jack, ssshhh, it’s OK, calm down.”

“Hurt hurt hurt HURT!”

Joe looked stricken, and I felt my own face burn.

I glanced over towards the crowd of people waiting on line and staring, and in that muted space and time, I realized the hardest part of traveling with Jack.

It’s not the tantrums or his mouth on my jacket or the obsessive questions about the flight schedule. Rather, it’s explaining him. There is so much I want people to understand about him, about us, about the spectrum disorder. So, if you are ever in an airport or on a shuttle or a bus or a train, and you see five red suitcases, four messy boys and one pink girl, this is what I’d like you to know.

Our son Jack has autism. He has trouble regulating himself, especially if he’s hurt or scared or confused. This means he screams sometimes, which can be a little jarring because he’s a giant 10-year old boy with the voice of a toddler.

But from the moment we step out of our front door, I am devoting every ounce of my energy into keeping him safe and comfortable. I am trying to make sure he doesn’t wander away from me or step on your toes or kick your seat or cut you in line. At some point, you may overhear my husband and I argue, because traveling with autism is very stressful business.

“Carrie, he needs to wear his fleece, it’s freezing in here.”

“Oh, really? We’re going to worry about that right now? You know he’s going to freak out.”

When I am not hissing at Jack to keep his tongue off the counter or assuring him our flight is on time and that we will try very hard to get him a window seat, I am looking at all the people around me. I am doing my best to anticipate his questions and comments and loud, booming observations about your wig or your skin or your hat or your baby.

I am trying to help him flex and bend and learn and grow; to see that many people are small while others are tall, there is dark and light and wide and narrow. Some even smoke tobacco, and that is OK. At the same time, I am hoping those around me may flex and bend and learn and grow; to see that some boys hop and lick and shout and fall. Some boys have autism. And that is OK, too.

Every day, I fight for his place in this world. And every day, I fight for your place in his world.

You can ask me anything. Please, ask me anything. Ask about spectrum disorder and stimming and medication and early intervention. I will tell you everything I know. You can ask Jack anything. He may not answer you, but if you really want to get a conversation going, casually mention that you think Golden Oreos are the best kind.

See, in our house, autism is not a secret. It is not a buzzword or a vague, underground rumor. It is true and vibrant and powerful. It is living within my son.

Trying to describe Jack’s autism to someone who doesn’t know him is like trying to describe the bluest ocean to a person who doesn’t see. It is deep and sparkling and brilliant and alive. It is slippery and quiet, but it can also be deafening. It likes to make waves. It’s not something you can hold in the palm of your hand, and yet all at once it surrounds you. It can take your breath away.

We are a family traveling with autism, and we are messy and loud and real. We are imperfect, yet unbroken. But please, don’t feel bad for us. Promise me you won’t shake your head or sigh or murmur about how it isn’t fair.

You see, for the longest time, fair was lost to us. In fact, we stopped looking for it altogether. But then we found it again. We found fairness and justice and truth in our boy. He is unexpected and earnest. He is delightful and strong.

In so many ways, he is just like you and me; he wants nothing more than a seat by the window and as many Oreos as he can eat. He longs to be understood. He wants people to stop smoking because it is bad for them, and for everyone around him to know he hurt his knee when he fell on the floor.

“I hurted my knee so bad. That’s how I screamed.”

And after an early morning ride on a shuttle and a fall in the airport and a very long trip on a plane, he wants to take a deep breath, close his eyes and jump as high as he can into the dazzling blue waters of the Caribbean ocean.

traveling with son with autism

This post originally appeared on Carrie Cariello’s site.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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