Melissa's daughter

When Strangers Heard My Kid Scream Led Zeppelin in the Grocery Store

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Although my daughter Zoey is considered nonverbal, music has helped her find her voice. This child can sing! But not all her songs are pretty ballads or catchy lullabies. Sometimes she sings in a high-pitched angry scream that sounds very much like a Led Zeppelin song.

Yesterday was that Zeppelin song. While we were at the grocery store, I was pushing around one of those carts with the car in front, and as soon as I stopped it, she got out. Did I forget to mention her nickname is Houdini? She can get out of any buckle or harness. We really don’t know how, other than the fact that she’s Houdini.

So there I am, chasing her through the produce section of the grocery store until I was finally able to scoop her up. But as I bolted to the checkout lane, she was singing Led Zeppelin’s “Immigrant Song” at the top of her lungs — you know, the chorus screaming part of the song. No, she wasn’t singing the actual song, but you can’t help hearing remnants of it in her constant scream.

I’m in the checkout lane waiting, groceries are on the belt and ready to go, and the screaming chorus continues while everyone turns to stare at us. Not a fun moment.

I keep looking at Zoey. I’m trying to get her to make eye contact so she can see I’m using the sign for “sit down” and “all done,” but her singing gets louder and louder until it was all you could hear throughout the grocery store.

The woman in front of me turns and looks my way to say, “It’s that time of the day, huh, Mom?” I smile, shake my head and think to myself, If you’re in the mood to hear Led Zeppelin, sure it’s that time of the day! 

I continue trying to sign and get her to look at me, but she isn’t having it. The young cashiers are chuckling and smiling, but I’m not.

Then I feel someone behind me put his hand on my shoulder and say, “You’re a great mom. You’re doing great!” Obviously a Zeppelin fan.

I thank him and say, “She has autism, and this is just a bit too much for her.”

He looks at me and says, “It’s OK, you’re both doing great!”

We left the store with all eyes on us, but we also left feeling OK. My eyes brimmed with tears as I thought of how this man had reached out to say I was doing a good job and I was a good mom.

We got to the car and I immediately put on “I Will See You Again” by Carrie Underwood, her “calm down song.” She finally stopped belting out the screaming chorus of Zeppelin’s “Immigrant Song” and instead was singing “Oh oh oh… oh oh oh.”

I think I prefer Carrie Underwood.

Follow this journey on the Facebook page Life With Zoey.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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Why We Don't Need to Understand My Nonverbal Nephew

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My nephew is 10 years old and of average height for his age. When he walks, it’s slow and unsteady. Looking at his waistline, it’s clear there’s some “stuff” going on: gastric/umbilical hernia in need of fixing (again) and an insulin pump on his waist pumping life-saving fluid into his body. Looking further down, pronounced coxa vara (a hip condition) and genu valgum (knock-knees) are visible. You can also see his flat feet with multiple scars from his clubbed foot operation.

He doesn’t talk except for a limited number of words. He throws tantrums like a 3-year-old with the added strength of a 10-year-old.

The list of diagnoses are almost endless: type 1 diabetes; possible FG syndrome; connective tissue disorder (most likely Loeys-Dietz syndrome); cardiac and pulmonary complications due to the connective tissue issues; autism spectrum disorder; mild-to-moderate intellectual disability; speech aphasia; hypothyroidism and more… He has around 10 specialist doctors at my last count. There are times it’s hard to comprehend why all these things happened to one small body.

But then he will show us he’s so much more than his diagnoses. Like when he switches on my computer, moves the pointer to press on the password tab and calls me, waiting for me to enter my password — the same way his 6-year-old brother does — only to push me away and continue to the desired folder filled with his favorite videos and music (interestingly, just like his brother does).

Or when he demands a hug from his brother because he really, really loves him. Then of course, there are the times he’ll hit and punch that same brother because he really, really doesn’t always love him.

His smile can demand a grin from the stuffiest stranger’s face, just like his tantrum (in the middle of a crowded shopping mall, of course!) can bring a frown and raised eyebrows to a sweet old granny’s face.

He’s joyous as much as angry. Demanding as well as accepting. Strong, oh so strong, but still so very fragile. (Three fractures in one year was truly enough.) He’s loving, kind, naughty, friendly, sarcastic (without uttering a single word) — he’s amazing.

You don’t need to understand him or his diagnoses. Just love him as he demands and deserves to be loved.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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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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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