To the Soccer Coach Who Stepped Up in a Big Way for My Son With Autism

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Dear Coach C,

As my son Ben’s first soccer season draws to an end, I wanted to take a moment to write this to you. I know I said thank you today on the field, but I also know those two simple words cannot convey just exactly how grateful my family is to you.

There are not many people would volunteer their time to coach 4- and 5-year-old soccer on a Saturday. I know this because of the multiple emails I received pleading for coaches for the league. If I’d had the slightest clue how to play soccer beyond “don’t touch the ball,” I would have helped. But you stepped up in a big way.

I know for many parents, soccer is one of many sports and activities their child participates in. For us, deciding to put Ben in a regular soccer league was a really big deal, and we didn’t make the decision lightly. For you see, we’ve tried other sports and watched them not work out well. Like the karate class where Ben spent almost the entire time in the penalty box because he would not “focus.” Or gyms that were too noisy, too confusing, too…much. So after careful research, we chose a soccer league that emphasized sportsmanship over competition — a league where everyone gets a trophy — and we held our breaths and hoped for the best.

So when I approached you on that first day and told you my little boy is autistic and may not look you in the eyes or always focus on the game, I fully expected to see an expression of panic on your face. I would’ve understood if you glanced for the nearest exit. I would’ve even understood if you had said, “Autism? I’m just a volunteer and I don’t think I am equipped to handle your son.” But you did none of those things. Instead, you gave me a reassuring smile and you told me he would be fine, and I knew immediately you weren’t patronizing me. I felt the confidence in your voice, and a glimmer of hope grew inside me. For the first time, I let myself believe that this could actually work. And then, you gave my son a jersey, and he suddenly he was a soccer player. Number nine. I know no one else felt it, but a momentous shift happened in that moment. My little guy who prefers his world of solitude was now part of a team.

Coach C’s soccer team doing a team cheer

Watching you with the children each week was just magic. Your positive energy was infectious, and even the most reluctant child was drawn to your energy. When my son would wander away from the field or in front of another player during drills, you never showed an ounce of impatience or exasperation. You guided him to where he needed to be. You talked him through what was going on in the game. You even adapted some soccer drills along the way to meet his needs. When Ben had the idea to knock down the cones with the ball, everybody took turns doing it. When Ben lost interest kicking the ball to a team member, you became his teammate until he was ready to join the group again. And you did all this with a smile.

Because of you, on soccer Saturdays he would wake excited to get on the field, and when he saw your bright red shirt, he’d run to you, yelling, “I’m here, Coach!” He got to feel the thrill of a game well played. He got to bask in the glow of applause from the crowd. He learned how to huddle up with his teammates and do a team cheer, “Go Cheetahs!” He got to slap the hands of the other team at the end and tell them, “Good game!”

During the games, it was hard for Ben to keep his focus on running after the ball, but you never lost sight of him. You always made sure he had equal turns to play. I watched as you made sure he had his turn to kick the ball in. I saw how you took the time to listen to him as he told you he was an airplane and joined his world by looking up to the sky, too.

I was touched when, on the tournament day, you made sure to say something personal to each child. You called Ben your “most enthusiastic player” with a great deal of heart. We all laughed together when you told the team they had grown so much this year, to which Ben piped up, “Even me!” Your example of acceptance to Ben’s unique soccer style paved the way for his teammates to accept him, too. I know that Ben has grown so much because of you, but the example you set for those other children will be lessons they take with them in the future about accepting differences in others and finding the strengths in everyone.

A simple thank you isn’t enough to convey our gratitude for the gift you have given him. Ben has regained his faith in the world of sports, and I know this will pave the way for him to try more in the future. I hope our paths will cross again, on the field or elsewhere, but I know one thing for sure. I believe God puts people in our lives in the moments when we need them, and he brought you to us. Thank you from the bottom of our hearts!

Love,

Jessica, Nick, and Ben

The Mighty is asking its readers the following: Describe a moment you gave or received a gift that touched your life in a special way. 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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The Challenge I Gave the Classmates of My Son With Epilepsy

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Some of the faces in the crowd were familiar to me, though having lost a little of early childhood’s pudginess. Fifth graders scooted in around me as I sat at the front of the room. I’d been invited to talk to my son Calvin’s classmates about him and about epilepsy, as I do every year for a handful of teachers who’ll have me.

I always start by telling them Calvin was born prematurely and missing a section of his brain — some of its white matter, its superhighway — and as a result it takes Calvin a long, long time to learn things and some things he may never learn. I told them he’s visually impaired, can’t talk, doesn’t walk well and still wears diapers. I explained that when he was 2 he was diagnosed with epilepsy. Then I asked if any of them knew what epilepsy was. A cute boy at the edge of the group raised his hand.

“It’s when your brain has seizures and you have to take medication to stop them.”

His answer hinted that he knew someone or perhaps had a pet with the disorder.

I went on to explain what seizures are, how several kinds exist and how some seizures can cause one to lose consciousness. I told them in some people, the medications don’t always completely control seizures but how folks still have to take the drugs and experience their side effects. I mentioned how the cannabis oil I’m making, which comes from a plant, seems to be helping Calvin safely come off one of his addictive, debilitating and harmful drugs. I ended my intro by saying Calvin is the best person I know. Then I asked them why they supposed I felt that way:

Because he’s your child?

Because he’s happy?

Because he’s nice?

I praised their answers and told them Calvin is the best person I know because he doesn’t have a mean bone in his body; he’s pure. I noted that I had one more important thing to say at the end of the session before I opened up the floor for questions.

“You can ask me anything about Calvin and about epilepsy,” I said, assuring them no question was out of bounds. After a short pause, the first hand went up from a pretty girl with long brown hair.

“Are all people with epilepsy like Calvin?”

I thanked her for the important reminder that, no, most people with epilepsy are not like Calvin, though a lot of people like him have epilepsy. I explained how it’s difficult to tell if someone has epilepsy unless you witness a seizure or you’re told. The boy who knew what epilepsy is raised his hand high.

“I have epilepsy,” he said, standing brave and sure beside his desk.

I was careful not to pry, instead channeling his courageous energy, underscoring how most people with epilepsy are smart and able to do the same things their peers can do. Then more questions began to flow:

How long is the longest seizure Calvin ever had?

How does Calvin communicate with you?

Can Calvin play any games?

What are his favorite things to do?

What medications does he take?

Do you know what his different sounds mean?

Will he outgrow his epilepsy?

Can Calvin recognize himself in a mirror?

Does Calvin sleep in a special bed?

Does Calvin’s body hurt after a seizure?

They looked sad when I told them Calvin’s longest single seizure lasted 45 minutes and the emergency drugs didn’t seem to be working. I told them that one time, while in the hospital when he was tiny, Calvin had scores of little seizures over the course of hours and the doctors didn’t know they were seizures but I eventually realized that they were. I assured them doctors don’t always know everything. I explained the words advocacy and paradoxical and convulsion. I talked about how Calvin doesn’t feel good after seizures and, finally, that he’d said the word Mama once, before the seizures and the taking of drugs began.

When there was a brief lull, one boy raised his hand and asked what I’d been saving to tell them.

I gently challenged them all to be an example for their peers by showing kindness and compassion to Calvin and by being his friend. I encouraged them to be kind to others who might look different, sound different, act different, dress different, speak a different language or come from a different country, because all of us have the same heart, and that by doing so, they can make the world a better place.

As I left the room, the children thanked me, and a freckled girl with a bob of ginger hair looked intently into my eyes, smiled sweetly and waved as I pulled the door closed and skipped off to see my Calvin.

This post originally appeared on Calvin’s Story.

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.

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Why It Was Hard to Ask for Help While Living With My Disorder

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I have lived with dystonia for 15 years. For more than half of those years, I had a hard time asking for help. My ego stood in the way. I was certainly helped by my loved ones, but it came with guilt until I put myself in their shoes. They wanted to help. They just didn’t know how, and I didn’t know how to ask because I struggled with the reality that I had limitations.

One time I had to fly across the country to go to a clinic because my symptoms were severe. My parents wanted to get me a wheelchair to use in the airports, but just the idea of that was beyond shocking. Me, a former competitive athlete in numerous sports and a well-seasoned traveler, needing a wheelchair? Never! Boy, was that silly. Turns out I needed more than a wheelchair, but because of my ego, I faced more challenges than I had to.

I felt guilty for having a condition like dystonia. It caused me to experience negative feelings about myself. I felt a sense of helplessness and unworthiness, which led to isolation. Sharing my feelings with others helped to break this isolation. Communicating about how I felt was vital to release my shame.

I also didn’t ask for help because I felt like a burden to others. But most people want to help. They often just don’t know how to help. This is where clear communication is vital. Let others know what we need and also let them know we’re here for them as well.

When I finally realized it was OK to ask for and accept help, those around me began to change. Life became much lighter for all of us. I learned asking for help and relying on other people doesn’t indicate weakness or failure. It’s a sign of strength. It takes courage to admit we need help, especially when we’re so used to an active, fully functional life.

We’re also not the only ones who live with dystonia. Our friends and family experience pain, too, as they sit by feeling helpless, watching their loved ones face challenges. This can put a lot of stress on friendships, marriages and other relationships to the point they can be dramatically altered or even end. Plenty of people have left my life because of dystonia. As much as we want to be understood by others, others want to be understood by us just as much. Please be sure to give your loved ones the opportunity to share what they’re experiencing.

While some relationships have ended because of the life changes associated with dystonia, many new ones can begin and some existing one can become stronger. It’s all a matter of how we deal with it individually and collectively. We need to listen just as much as we talk, if not more. An open-door policy with any challenge in our lives is the best way for us to help one another and strengthen our relationships.

Some people have a strong desire to fix us. When they realize they’re unable to, some will retreat and then less of our needs are met. It’s our responsibility to let our spouses, parents, kids, siblings and friends know that it’s OK they can’t fix us and we don’t expect them to.

We need people to listen to us without trying to fix or change us. We need to feel they’re there for us, and the best way they can do that is to just listen, open their arms and hearts and simply acknowledge our feelings, not change our feelings. Acknowledge our feelings to let us know we matter and what we feel matters.

It’s important for us to understand the people we seek all these things from may also need the same things from us. I think it’s more difficult to watch a loved one in pain knowing we can’t take any of it away than being the one experiencing the pain. Please keep this in mind when you judge how others handle your situation, remembering it’s also very hard on them. Support is a two-way street.

Many helping hands are there for us. We just need to reach out. To feel comfortable allowing others to help us, we have to overcome the fact we sometimes need help. All people do in one way or another.

Tom Seaman the mighty.1-001

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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Why It’s OK When My Son With Autism and I Need to Leave a Party

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“Where are you going?” We’re often asked this question when we have to remove our son, C, from an activity, family gathering or a party.

“He needs some quiet time,” we’ll say. Our response is often met with confusion, a remark that I must also need quiet time or a simple nod of understanding. Maybe I was naïve, but I thought it would be easier for others to understand after my son had been diagnosed with autism.

Over the years, we discovered that scheduling breaks to avoid sensory overload is necessary to our son’s success in any non-routine situation. We didn’t always schedule breaks for him and learned the hard way. Meltdowns came out of nowhere — or so we thought. The truth is we didn’t know how to recognize his nonverbal communication.

Now I can see when he starts to get on edge. He clings tightly to a Matchbox vehicle — maybe even one in each hand. Cars and trucks have always been his comfort items. He calms himself by playing with them, resting his head on the ground to study the wheels.

He starts to snap a little at other children, not allowing them to play near him. If his sister is there, he picks an argument with her to place his frustration somewhere “safe.”

Verbal communication diminishes. Baby talk, grunting or whining begins.

Instead of seeking out new toys or playmates, he retreats into his own world. He ignores the kids around him and refuses to let them into his bubble.

Once any of these signs appear, I whisk him away to a quiet place. We call it his “quiet time,” and we go to a quiet room and close the door. He can play with cars or watch a cartoon. When he is able to retreat to a quiet, safe activity, then he finds a way to center himself.

Now that he’s 4, he’s better at telling me what he needs. “I want to go home,” is actually code for, “I have reached my limit.” Time has taught me that making him stay is unfair and, in some cases, can hurt him. Making him stay means forcing his body into sensory overload and discomfort, which will result in explosive meltdowns.

Being a special needs parent has toughened me a bit. I used to care more about what people think, but now the bottom line is this: I need to do what is best for my child.

Kristin Novotny the mighty.2-002

Follow this journey on Little Mama Jama.

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When My Lowest Point Was Also My First Step to Mental Health Recovery

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The end of last month marked the one-year anniversary of the worst time of my life. One year ago, I decided life was not worth living. One year ago, I gave up completely. One year ago, I ended up in the hospital where I was sure I would die. But something amazing happened. One year ago, some of the strongest people I know came to my side to support me and help me get better.

My parents drove six hours in the middle of the night to meet me at the hospital. My parents hugged me, told me they loved me and in the morning packed up all my belongings and drove me home. I remember feeling like my life was entirely out of control. I remember feeling anger and fear as I left my home and my friends. In a moment of clarity I wrote this…

“Sometimes the best thing is the hardest thing. Sometimes it feels like you’re going to die doing it. Sometimes it feels like your heart is being ripped out of your chest. But if it’s the right thing, the best thing, it will all work out in the end and all that pain will be healed.”

The first few weeks were the most difficult. Making decisions were just too much for me. My mom had to stop everything to take care of me. It was like having an adult toddler. She had to tell me to put my socks on and then my shoes. She had to tell me to get out of bed and tell me we were going to the doctor. She even had to sit with me at night until I fell asleep. Not once did my mom complain about it. She did everything she could to help me find a way to recover.

I remember seeing a psychiatrist at the hospital, telling her what I was going through. She was the first doctor to tell me that what I was going through was real. She was the first person to look me in the eye and tell me that it was not my fault. She was the doctor who diagnosed me with my bipolar disorder.

I spent most of the first week sleeping. My body had been through so much with so little sleep, it was a necessity to get better. The next three weeks I spent in a program where they taught a group of us how to eat healthier, explain our illnesses and give us specific tools to help manage them. The doctors worked together to monitor and diagnose me further, helping me find the medication and resources necessary to help me recover.

The past year has been a long and hard walk to recovery. It hasn’t been easy and was full of lots of ups and downs – literally. Bipolar disorder is a hard thing to deal with when it’s not managed well. But my family, my friends and my doctors have all been there for me, and I’m finally at a place where I can take both reigns of my life and live.

One year after that horrible day, I am strong, successful, recovered, stable and happy. I love my life and I cannot imagine giving it all up. I owe a million thank you’s to all the wonderful people in my life who helped me recover, deal with my new diagnosis and stuck around, even when life got hard. I love you all, and I can’t imagine where I would be without all of you. So thank you.

This post originally appeared on Defying Shadows

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

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Rapper Fetty Wap Gave Boy Missing an Eye Something His Parents Couldn’t

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A rapper’s unapologetic individualism taught one young boy a valuable lesson.

Brenda Vader, from Denver, has a son named Jayden who was diagnosed with retinoblastoma when he was only a year old, according to a post on her Facebook page. Retinoblastoma is a rare cancer of the thin membrane on the inside back of the eye that is stimulated by light, according to St. Jude Children’s Research Hospital.

Jayden’s cancer treatments ended up costing him his eye, and he’s worn a prosthetic ever since — that is, until rapper Fetty Wap came onto the scene.

Screen Shot 2015-09-16 at 12.05.15 PM

Willie Maxwell II, better known as “Fetty Wap,” hit it big this summer with his song “Trap Queen.” Maxwell was diagnosed with glaucoma when he was 6 months old, which resulted in him losing his left eye, he told TMZ. But the rapper now refuses to wear a device to hide his missing eye.

“I just stopped wearing the prosthesis because I didn’t want to look like everybody else,” Maxwell told TMZ.

Jayden, a fan of Fetty Wap, recently made the same decision — he decided to stop wearing his prothesis. His mother posted about Jayden’s decision on her Facebook page.

 

(Warning: long sentimental post ahead) Today I am forever thankful to a young man named Willie Maxwell aka Fetty Wap….

Posted by Brenda Vaden on Thursday, September 10, 2015

 

Read the full text of Vader’s post below: 

(Warning: long sentimental post ahead) Today I am forever thankful to a young man named Willie Maxwell aka Fetty Wap. While his music is catchy (not always agree with his lyrics but hey who am I to judge…), I’m not necessarily his fan (although Trap Queen is my jam), BUT today I’m his biggest fan.

Many close friends, and of course our family know that Jayden was diagnosed with Retinoblastoma at the age of 1. In result of that he had his right eye removed 2 weeks after his 1st bday. He’s worn a prosthetic eye since then. He has always been terrified of taking it out and would not be caught without it…and then comes along Fetty Wap…

Similar to Jayden he lost an eye at a young age and along the way he decided that he didn’t want to wear his prosthetic eye anymore, so he stopped. Jayden, let it be known, is a Fetty Wap fan, a real fan, not like me ha! Well, today, after weeks of asking, Jayden is venturing the world without his prosthetic. I of course am a wreck because this world can be cruel, but so proud of our Boogies. This young rapper unknowingly gave Jayden something we weren’t able to give him — the confidence to be different — and I am grateful to him. Thanks to Fetty Wap for saying F the world this is me, and for helping make our baby boy just a little more remarkable than he already is. And we’ll be purchasing his album, a small thank you to him for changing Jayden’s life forever.

Since Brenda Vader posted the above on Facebook and Instagram, she’s received an outpouring of support.

Check out the video for Fetty Wap’s song “Trap Queen” below: 

h/t BuzzFeed

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