When My Son Told Me Why He Threw Up During Speech Therapy

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My son and I have the best talks while driving around town. His first sentence came out in this car. I don’t know why he can carry on a conversation so much better on four wheels, but maybe the car has nothing to do with it. Maybe it’s the fact that he’s back there and I’m up here. No pressure to read my face. 

“Hey, buddy! Check it out. We are right by your old school where you took speech.”

“I know. Mommy, I have to tell you something. Remember when I threw up there?”

“I can’t believe you remember that… ick. Yes, baby. You were sick.”

“No. I wasn’t. I wasn’t sick. Everyone was trying to get me to talk. It was hard, so I threw up.”

I’m glad he couldn’t see my face.

I looked back on that day. No fever. I took him home and he was fine, but now I was the one who felt sick. Was it really that much stress? I can’t believe I never thought of that. I wanted to pull over and hug him. I wanted to tell him I was sorry. I wanted to explain that the doctors told me if he didn’t speak by a certain age, the words would never come. I wanted to tell him I refer to those years as the, “I don’t know what the hell I’m doing,” years. It had to be hard then, so it could be easier now.

It had to be hard for a tiny child?

Guilt overwhelmed me when I thought of what I really should tell him. Those other things were the truth, but so was this…

“You worked so hard as a preschooler because Mommy needed your words.” I wanted to tell him those early years scared me, more than today scares me and sometimes even more than the future scares me. I was afraid he was in there and would never find his way out. I would never know him. Yes, I wanted to help him, but I wanted to help me, too.

I couldn’t tell him this. He wouldn’t understand, and my tears would only scare him.

This is the part in the story where I’d usually tell the reader how I learned some big lesson and then tie it in a neat little heartwarming bow, but I can’t. Was it right to push him? I don’t know. I do know now that autism is not the sprint to the finish I hoped it would be at the time. It is a marathon you train for every day. If Colin never spoke, our journey would be different, but his heart would be the same. I know that now. The nonverbal children I have met over the last few years have taught me as much.

We sat in silence for a little while. I looked at him in the rearview mirror as he happily leafed through library books.

“You know that sometimes mommies don’t have all of the answers, right?”

“I know.”

I wonder how much of this parenting thing is going to involve learning to forgive myself. I wonder if every decision will feel like bricks on my shoulders.

Most of all, I wonder if the,“I don’t know what the hell I’m doing,“ years ever really end. Maybe they never will, but I know more than I did yesterday. Today, I’m holding on to that.

mom about to kiss son
Photo credit: Gene Rodman

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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 Share Your Story page for more about our submission guidelines.

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17 Tips to Make Thanksgiving More Comfortable for Kids With Autism

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Thanksgiving is a holiday that involves a lot of planning, but for many families, it goes far beyond turkey and hosting. For children on the autism spectrum, Turkey Day can be a chaotic and overwhelming day, so we asked parents in our community if they have any special tricks to make it more comfortable for their kids.

Here’s what they had to say:

1. “Arriving early to venues before any crowd or noise arrives helps tremendously. It allows my child time to acclimate and ease into the ‘chaos’ of the holiday.” —Tina Annette Erwin

2. “Don’t expect them to change their routine because you are changing yours.” —Stephanie Loubier Weiss

 

3. “An Xbox!” —Susan Roudebush Robertson

4. “We’ve learned to dress them for comfort, not the occasion. Our ‘holiday’ outfits are usually sweats or leggings and hoodies or soft tee shirts.” —Lauren Cockrell

 

5. “Dinner has to be at its normal time… no eating at 2 p.m.” —Alecia Rozanski Edmonds

6. “Have it at our house!” —Amy Elizabeth Kennedy-Bang

7. “Remember to let him enjoy the holiday his way. If he spends the whole time with headphones on and rocking in a chair, that was fine by me.” —Christy Vogel

 

8. “Prepping for a holiday event is similar to invading a country in our home. Mapping out escape routes, easy enters and exits, places to hide, sound proof equipment, diversions and distractions, not to mention bringing along a backpack full of arsenal (toys, electronics, food, drink). We start talking about Thanksgiving the second Halloween is over. I’m pretty sure a space shuttle launch requires less prep time.” —Brittany Van Arman-Miller

9. “We always bring food we know he will eat. It’s easier on all of us.” —Jennifer Roberts Bittner

 

10. “We’ve been known to have nuggets for them.” —Kellie Luke

11. “Make sure the iPad is charged and ready to go… don’t forget the charger.” —Melissa Cote

 

12. “We let our son tour the buffet before anyone else and without an audience. He can touch and smell suspicious foods and if he wants, taste. This has saved many meltdowns.” —Lindy Burnett

13. “We always plan to make a quick exit if it’s too overwhelming for her.” —Victoria Rusay

 

14. “Lots of prep telling him what to expect, where we are going (describing the location to help him remember if he’s been there before), who will be there, emphasizing people he knows.” —Elizabeth Barnes

15. “I put ketchup on his turkey.” —Breanne Guzman

16. “No matter where we are celebrating our holiday, we find a little spot away from the activities where [our child] can escape to to be alone.” —Lauren Swick Jordan

 

17. “I let [my son] take breaks through the day.” —Corvette Shannon

*Some responses have been edited and shortened for brevity.

Do you or a loved one on the spectrum have any Thanksgiving day tips? Let us know in the comments below.

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To People on the Autism Spectrum Who Struggle With Holiday Gatherings

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I love sports. I grew up playing soccer, basketball, football, and for a brief moment, I even ran track. Some of the greatest lessons I learned didn’t happen on the basketball court or the football field — they happened on the track.

A few months ago, in an effort to explain to someone how autism spectrum disorder impacts how I socialize with others, I gave an analogy that social interaction is like running sprints for me. I can do it but not for long periods of time. As helpful as that analogy was at the time, I must confess that I lied. Socializing isn’t like running 100-meter sprints — it’s more like running the 100-meter hurdles.

As an adult with autism spectrum disorder, I’m learning most people don’t have the opportunity to see my intense internal struggle with navigating social situations. If you want to really see me struggle, however, put me in a room full of family and friends during holiday gatherings. Just the thought of it scares me to death, so over the last year, I’ve learned to take a few lessons from the track and turn them into strategies for handling the “holiday hurdles.”

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1. Support

One of the first keys to being able to run well is to have good shoes. A few years ago, I tore my right Achilles tendon while playing basketball. Following my surgery, my doctor made me purchase athletic shoes that provided me with the proper support.

I’ve learned that living on the autism spectrum requires me to have support. I can’t run my race without support. My wife is committed to helping me navigate social situations by helping me feel safe, feeding me cues and clues and recognizing when I’m beginning to feel overwhelmed and stepping in to give me some relief. Before you head into the hectic holiday hurdle race, make sure you have the support you need.

2. Stretch

Anyone who has ever exercised knows that stretching before running is extremely important. Stretching makes you more flexible and can improve your performance as well as prepare your muscles for rigorous activity. Life on the spectrum often means holiday socializing can be scary, but try to warm up to the idea a few days in advance. I like to spend time mentally preparing myself to interact with people. Spend time alone, do things you enjoy with no interruptions and then slowly warm up to being more social.

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3. Steps

If you’ve ever watched a 100-meter hurdle race, then you’ve probably noticed the runners on the track warming up by jumping a few of the hurdles before the race actually begins. What they’re doing is actually creating a system for maximizing their steps. Jumping hurdles requires a system. Identifying your “lead” leg is crucial, because it’s the leg that goes over the hurdle first.

Here’s my point: Jumping the holiday hurdles is a little easier when you have a system. Determine your “lead” leg by working on your script in your head. It doesn’t hurt to have a few conversation topics ready, so you can comfortably engage with others for a few moments. When you’re jumping hurdles, every step is important, so spend time preparing yourself for the occasion by doing as much as you can to find out who will be there, what you will be expected to do and how long the gathering will last.

4. Start

Running a great race means getting off to a great start. When I consider spending time in large social settings, I try to get off to the best start possible. This means I try to start my day off with something positive, and when I actually arrive at a large social gathering, I try to start off the time with as much interaction as I can. I know myself well enough to know that I won’t feel like socializing after an hour. But if I get off to a good start by engaging people at the beginning, I feel more secure, and others feel they had an opportunity to spend time with me. This works great for me because after a big holiday meal, most people end up sleeping anyway, so I don’t feel as awkward when I need to slip away and be alone.

5. Stride

Jumping hurdles takes a ton of energy, so what you do in between hurdles is very important. A good hurdler has a decent stride in between hurdles. A stride is a long step, so depending on your personality and social capacity, determine a pace that works well for you. But by all means, take as long as you need in between hurdles. Don’t rush from one social activity right into the next. A good pace can actually protect you in the long run.

6. Celebrate

OK, so this one doesn’t start with an “S,” but it does make for a good ending. Running hurdles requires a good start, but it also requires an excellent finish. The holiday season is filled with sensory overload, social anxiety and mental and emotional fatigue, so have a plan for how you will finish the race. Have an exit strategy. Life on the spectrum isn’t easy, and lots of people won’t understand why you just can’t stay for another hour. But no matter how things turn out, learn to celebrate the fact that you ran your race and you ran it well.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease during the holiday season, 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 Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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The Different Kinds of Parents We Have to Be for Our Child With Autism

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We are the first family who will tell you the joys of our son, Kreed, and the way he sees the world. We are also the family that will tell you how incredibly difficult it is and scary it is to have a child/adult with severe autism and the self-injury and aggression that goes along with it. Kreed can communicate, but he still can’t communicate prior to a meltdown.

Tonight… tonight my arms hurt so bad I can barely lift them. Kreed split his lip, bruised his head and cut up his hands. He wanted to damage himself to somehow help the pain elsewhere in his body (migraines and peripheral neuropathy). Not to mention his low blood sugars we are always battling. And it is a battle. We do battle every day. Every. Single. Day.

We don’t know which Kreed we will get. Sometimes it’s terrifying watching your son self-injure himself, and you wonder if you are strong enough to protect him from himself and know that you could get seriously hurt in the process. And we have. Been bit, bruised, cut, sliced — everything.

For some of us families, we not only have to parent and teach, but we also have to protect. Not protect ourselves, but protect our child from himself. This is incredibly difficult knowing part of your job is to provide that protection. In those moments we aren’t parents; we aren’t the ones kissing the boo boos or snuggling and finding joy. We are fierce and strong, and sometimes have to do things we never thought we would do or knew we would have to do for their safety. No parent wants to think of that. But we have to. We have no choice.

He’s our son. And we have moments of joy, and we focus on his quality of life and finding happiness. But some days his body is so racked with pain due to his medical issues that there is no joy to be found that day. Most people with Kreed’s set of disorders would probably tell you they are in immense pain every day, and just waking up and being present is enough. Kreed does so much more some days without a hint of pain. But other days he’s in so much pain, we do battle.

So today is not a fuzzy, loving, storytelling the joy we found today or what an interesting way Kreed sees the world. Today was about a battle. About his pain. About his lack of communication. About what severe autism sometimes looks like and what we families have to go through.

Even un-screwing the lid to his peanut butter jar brought me pain, and I didn’t think I could do it. Getting Kreed ready for bed was painful and long and hard. Because even after he rages and destroys everything in his wake, we still have to pick up the pieces and move on. We have to be the shoulder for him to cry on, even after he’s tried to harm us. The moment it’s over, it’s over. Then we can go back to being parents. Sometimes it’s easy giving that shoulder immediately. Other days it’s hard and you flinch, fearing a bite instead. The fear can get you some days. Everything can get you some days. Some days are a battle, and you don’t even know if you’ve won. And some days are exhausting, and you don’t know how you will get up the next day and do it all over again. But you do. You always do.

Tomorrow we will wake up and try again. We will try to manage his pain and find what makes him happy. We will tweak things and adjust things and hope he comes out with a smile instead of a punch. Because that’s what we do. We are there to pick up the pieces, to love, cuddle, hug and be there — but also to be incredibly strong, fierce and brave for your child.

We don’t know which kind of parent we have to be every day, but we always do it with love and show him as much love as possible.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Follow this journey on Kreed’s World.

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When a Dad Approached Us After My Son With Autism Hurt His Child

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The last two years since my younger son, now 6 years old, was diagnosed with autism, have brought lots of ups and downs and challenged our family’s way of life. For me, it was permeated with feeling isolated and misunderstood in most of my social experiences. I’m sure this is partly due to closing myself off to perceiving things differently, not through the painful lens of grief. But once in a while, that door would open, and people around me would humble and inspire me with their incredible wisdom and kindness.

This year, I feel indebted to a parent my son and I met at a local playground under not-so-happy circumstances, when my son unexpectedly lunged and toppled to the ground a girl much smaller than him who was drawing with chalk on the sidewalk. The girl’s father scooped up his daughter and looked at me as if asking a question. He said nothing; he didn’t yell at me or my son (which happened to us once before in a grocery store). He just waited for an explanation.

I apologized profusely and explained that my son has autism and that this behavior is new to us, and I was not able to predict and prevent it. Luckily, the little girl didn’t get hurt physically, but she was pretty upset. I helped my son apologize to her, and we quickly retreated to our car, where I just started crying. We couldn’t leave immediately because we had to wait for my other son who played tennis in the nearby courts.

The father and his daughter approached us. He inquired if I was all right and asked for help to explain the incident to his daughter. He said it was important to him that she didn’t think my son was a bad person. It was important to him that she feel comfortable around children with special needs. So we talked to her about how my son needs help talking to other children, how he loves drawing with chalk and probably wanted to join her but didn’t know how to ask. She happily went on to ride her bicycle, and we went home.

I don’t know how to convey the sense of responsibility, shame, sadness, anxiety, guilt and horror I feel as a parent when my child hurts another person. These feelings can flood me all at once, making it difficult to function well in the moment. It took me a couple hours to realize the extraordinary thing that happened when this awesome dad of the girl my son hurt approached us. I want him to know he made a difference in my life. I also wonder somewhat anxiously whether he recalls this event as positively as I do. I hope he does.

I’m so grateful to this individual — who was and is a complete stranger to us — for his kindness and understanding, and for his ability to actively express it. It gives me hope when I read stories about lawsuits by neighbors and families being taken off flights due to concerns about their family member with autism. I wonder sometimes if I’d be able to respond this way if I were in his shoes, and I make a renewed commitment to try not to judge, and to practice kindness and acceptance.

Egle Narevic's sons
Practicing gentle touch with older brother’s guidance.

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 to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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This Is What I Imagine Autism Feels Like for My Son

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Editor’s note: This is written by a mother from the perspective of her son.

Dear World,

Last week my family went to Disney. We went to the one in Florida, not California. The one in California is called Disneyland and it opened on July 17, 1955. Disney World opened in 1971.

Anyway, my mom and dad picked us all up from school at 12:14 on Tuesday afternoon. I was in science, and I was surprised when I heard my name on the loudspeaker. When I got in the car, they told my three brothers and my sister and me that we were going for a flu shot. We were all very mad about that.

Then they pulled the car over and said, “Why don’t we go to Disney instead?”

I didn’t know what to think about it. I was happy, but I also like to know about things a long time before they happen so I can think and talk and plan for them.

We got to Disney around 6 at night, and the first thing I did as soon as we got to our hotel was unwrap the soap in the bathroom. I do this every time we go to a hotel. While everyone else is bouncing on the beds and wheeling the suitcases around, I go quietly into each bathroom and find the soap.

We had dinner in a crowded restaurant. I could tell everyone around me was happy-happy-happy, but I could not stop worrying about school. I was worried about missing something fun like a movie during class, and I kept asking my mother over and over to email my teacher.

There was a man sitting right behind me, and he was laughing so hard and weird it sounded like a donkey who had just heard the funniest joke ever. Then my father ordered something pink and spiny called crab legs, and their fishy smell bothered me. And there was a woman at the table next to us who was wearing a string of Christmas lights around her neck, and they were blinking on and off over and over again.

All of a sudden, my brain could barely breathe. It was already 9:23 p.m., and I really like to be in bed by 8:30 p.m., and because of this laughing and the blinking and the smelling, I felt like my skin was trying to come off of my face.

I tried doing my newest trick, which is making my fingers dance and twitch in front of me. It makes me feel good, but I can tell it does not make my mom feel good, because she leaned over and asked me to stop. She said we should have brought my stress ball, and if I had known about the trip, I would have reminded her a lot of times to pack it.

So I tried to keep my hands still, but I felt like a balloon that was going to pop. I had to do something, so I shouted, “What the F*&%!” I know these words are bad, but sometimes they feel so good to say. They feel hot and salty on my tongue, and when I shout them, it’s like letting a little bit of air out of the balloon.

In Disney we went to visit places called parks every day, except they look nothing like regular parks that have slides and stuff. These places are huge and crowded, and they have music and food and people called characters wandering around in their big silly costumes.

The minute we stepped into the park everyone — especially my brothers and sister — started to be so bossy about me. It was making me really mad.

“Jack! Over here!”

“Where’s Jack?”

“Jack, stay with us!”

Finally I screamed, “Everyone stop bossing me!”

Mom took me aside and told me our family just wants to make sure I’m safe and that I don’t wander off, but it still didn’t feel good. I am 11, not a baby.

The ride called Space Mountain was so fun. My dad took me and my brother Charlie back to the park until late one night, and we rode it all together, and it made me so happy. I could not stop talking about it.

Sometimes I can’t stop thinking or talking about things, like that night at dinner I kept asking and talking about the death penalty because I saw something about it on the television at the airport. Whatever I am thinking about gets big and huge in my mind, and it pushes everything else to the side, like an elephant in a crowded elevator.

My mom got a little mad and said, “Jack! We are in Disney! Please stop talking about the death penalty.”

The next day we went to a place called Epcot, which was totally boring and not as fun as the park called the Magic Kingdom because it was all about learning.

We were on line to go on a ride inside of this big ball that looks just like one of the golf balls my dad keeps in the garage but he tells us not to fool with, and I turned to my mom and asked when it was going to snow at home.

The lady in line behind us heard me, and she said, “Oh, you said it! You said that nasty word, snow!”

I had to double-check because I didn’t think snow was was a nasty word. Snow is nice. It is cold and pretty and sometimes we don’t have to go to school if we get a lot of it.

“Snow is not nasty. You are freaking wrong.”

When I said this to her, the smile disappeared from her face like someone had wiped it away with a sponge. My mom put her arms around my shoulders and turned me away, and then she turned back to the lady and said a few things quietly. I think she was telling them about my autism.

I used to hate when she did this because it made me feel bad. But my mom tells me a lot that autism is not a secret — it is not something to feel embarrassed or ashamed of, because it is as much a part of me as the freckle on my left leg.

World, all day long you flash and dance around me being your funny, stinky, noisy, happy, scary self. You confuse me.

See, I am like a fish inside an aquarium. I want to watch you from behind the glass. I want to stay in my school and eat my regular food and listen to my favorite radio station and go to bed at my normal time. I do not like surprise trips.

I am safe here, in my bubble. Your sounds are muted and hushed, and I can tell the difference between a nasty word and a nice word. I don’t have to listen to your big loud donkey laughs or shut my eyes against your blinking lights.

At Disney we took something called a shuttle a lot. One night we were riding the shuttle late. It was very dark inside, and I was sitting next to my mom and thinking about snow and nice words and nasty words, and then I remembered another word I didn’t know.

“Mom. What does for loner mean.”

“Well, it means, like, to be a alone. A person who is alone. Why are you asking? Do you think you’re a loner?”

“Without you. For yes.”

“Oh, Jack.”

I could not see her face, but I could feel her wearing her sadness on her body like an itchy sweater, the kind she makes us wear for our Christmas picture. I put my head on her shoulder and then she put her head on my head, and we stayed that way until the shuttle stopped, even though I don’t usually like to touch people for that long.

On our second to last day, we had lunch in an African restaurant called Sanaa, where we could look out the window while we ate and watch giraffes and ostriches strolling around. Our server was a nice smiley man named Boylson. His nametag said he came from Botswana, which is in Africa, and he didn’t get mad when I shouted, “This food. Makes no sense to me.”

After we were done eating this funny bread called naan and my brothers and sister wandered away from the table to look at the animals, I heard my mother ask Boylson if they had autism in Botswana.

She is not shy, my mom.

“Oh yes,” he smiled at her. It was not a real smile that made his face look happy, but more like he stretched the corners of his mouth. “It is everywhere.”

Then she asked about services, and evaluations, and doctors, and he just looked at her and smiled once more, gentle-like this time.

“You know, there was a boy in our village who could not hear a single sound. Nothing at all. But still, we found a way to talk to him. We loved him.”

I was thinking hard about a boy who could not hear a single sound, because I think that would be weird and also maybe kind of nice not to have to hear loud donkey laughs, but when I looked at my mother I could tell she wasn’t thinking about that boy at all. I could tell she was thinking about me.

She was thinking about always trying to find new ways to talk to me, and to hear me, and to love me — to nudge me out of my fish tank and into the wide, open world. She knows I don’t want to be a loner.

I think I know the answer, world.

You and I, we can’t be something or someone we’re not. We can’t change all the way for each other. But this does not mean we won’t be friends.

So I think you should keep being your stinky, funny, loud, busy self.  Tell your jokes and laugh your laughs and smell your smells.

And I will continue to be myself. I will do my double-checking and try to understand your words and shrink the elephant in my brain so he’s smaller, more like a turtle.

In the meantime, if you happen to notice a boy standing in the airport and his fingers are dancing in front of his eyes, be kind.

Be tender.

I am trying.

From,

Jack

Follow this journey on Carriecariello.com.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or 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 Share Your Story page for more about our submission guidelines.

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