The Unexpected Help My Son With Autism Received From His Class

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It seems you hear more and more about children getting bullied, especially those with special needs. My 6-year-old son, Brock, who is on the autism spectrum, unfortunately has already been a victim of bullying at his young age.

When he started public school last year, I was worried for him because he’s quite vulnerable and will do anything to make his friends happy, even at the expense of himself. He didn’t talk much of friends at school, besides here and there. And I heard certain names of kids being talked about more than others.

When I had his very first individual educational plan (IEP) meeting last November, I heard something all parents wish for their kids, but even more so when you have a child with special needs. Brock had a very special best friend. And not just one friend but a whole group of them.

You see, Brock is scared to try new things and would do everything in his power to avoid doing so. But that started to change with a boy named Cooper. When Brock had to wear glasses after his eyesight went bad, his teacher tried encouraging him to put them on but to no avail. Then Cooper started chanting, “You can do it, Brockster the Rockstar.” Soon, the whole class joined in. That was the first day Brock started wearing his glasses.

In December, the elementary school had their very first concert of the year. The students did a lot of hand movements for certain songs. With Brock’s significant developmental delays, things like hand movements become quite challenging for him. I watched in amazement as his classmates stopped what they were doing during their live performance to help show Brock how to make the correct movements for the song they were singing. I don’t think I’ve ever cried as much as I have when I saw those 5- and 6-year-olds do that for my child. They didn’t even care that their own performances was on hold. In that moment, all that mattered was not letting their friend be left behind.

In January, Brock started play therapy at school to help with some behavioral issues he was having. A few months later, I met with the therapist to discuss any progress he was having. I learned that during the first few sessions, Brock would hide behind his teacher’s desk in the hopes of avoiding yet another therapy. His friend, Cooper, all on his own, got Brock to go by offering to join him. Cooper attended the first four sessions with Brock.

After the spring concert in May, Brock had a big meltdown in the hallway next to his classroom. The first thing I tried to do was to remove him from the situation, especially since it was in public. He gets embarrassed about his public meltdowns later on after he calms down. When that wasn’t going to happen, I knew I would have to try and help him right there. Imagine my surprise when some of his little friends sat next to me to help Brock calm down. They started saying, “It’s OK, Brockster” and “You’ll be OK.”

Those are just a few instances of some things that happened throughout last school year. Never in my wildest dreams did I think my son would be blessed with friends like that. His classmates didn’t see a child who was different; they saw him as a friend who happened to need extra help and they were more then willing to make sure he got it.

This is the exact reason why raising awareness for special needs is so important. I encourage people to ask me questions because the more aware people are, the less significant these differences become. I’ll be forever grateful for the parents of my son’s classmates for teaching acceptance. And I hope his first-grade year coming up will be just as successful as this past kindergarten year.

Lindsay Jolly the mighty.1-001

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10 Reasons I’m Not ‘Undateable,’ Like This Casting Agent Suggested

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For many, it’s a dream come true to hear from a casting agency inquiring if you’re interested in a role on their TV show. I guess it’s a dream for me, too. In fact, it’s on my God-sized dream board to appear on “The Ellen DeGeneres Show” and to participate on “What Would You Do.”

A couple of months ago, I did receive an inquiry from a casting agency for a reality TV show… but it wasn’t a quite a dream come true.

To sum it up: A man in the U.K. saw my YouTube video and emailed me. He asked if I was still living in the U.K. as he was looking to feature people on a reality TV show: people with “significant medical conditions” who were “looking for love.” When I inquired about the specific name of the show he was casting for, he avoided my question. So I went to Google and did my own research. The casting agency that reached out to me works for two shows with the description he gave me: “Too Ugly for Love?” and “The Undateables.”

I know a few people in the U.K. who enjoy the shows; however, a majority of the people from the U.K. that I’ve connected with are strongly opposed to them. Having limited access to the shows, I only want to focus on the titles. I’m not fond of them. Maybe the show helps educate others about different conditions by raising awareness, but I still don’t like the titles.

There’s a lot I could say about them, but that’s not why I’m writing this. I’d rather focus on the positive. I’d rather tell you why my facial birthmark doesn’t make me too ugly for love or undateable.

1. I have a unique perspective on life. This comes from both my unique appearance and my experiences. I know there’s more than one way to look at a situation. From firsthand experience, I know we shouldn’t judge a book by its cover — or a person by how they look.

2. I know how to laugh. I have to laugh, whether it be at myself or at a situation. I know I can’t take everything too seriously. When someone asks if I painted my face with face paint, or a child asks if I got my birthmark from “eating a hamburger,” I laugh. Life would be too hard and complicated without those moments of laughter. I can’t wait to laugh with a significant other.

3. I’d add a bit of color to a man’s life. (See what I did there?) Not only will the purple hue on my face add in some color, but my life is never boring. There’s always a story to tell.

4. My family is amazing. They’ve never treated me differently because of my facial difference. They still pushed me to do my best; they still tell me I can do anything I put my mind to. They’ve encouraged me to be proud of who I am, as I am. They love and support me.

5. I (typically) have a lot of patience. I get asked a lot of questions and I get stared at often. It usually takes a lot to push me over the edge. Sometimes I have to explain my birthmark and condition 20 times a day; sometimes I don’t have to explain it a single time. Either way, I don’t mind.

6. Life isn’t always easy, and I get that. I’m basically a pro at knowing how to persevere, and I never give up. I may get knocked down on occasion, but I always get back up. The staring and the comments? The medical procedures? My image going viral? All these things have had a part in teaching me to persevere with joy.

7. My heart is compassionate. This goes hand-in-hand with having a unique perspective in life. I know what it’s like to struggle, to go through a hardship — both because of my birthmark and general life experiences. When I see others struggling, my heart breaks.

8. I am one of a kind. Birthmark or not, there’s only one me.

9. When I date or marry, my boyfriend/husband won’t be taken for granted. I get that my birthmark isn’t up every guy’s alley, and that’s OK. Especially when it includes laser treatments every two months, rude comments, and constant stares. I know other people close to me are affected by people’s harsh comments and gawking. Whoever I date/marry will probably have similar experiences themselves. Whoever I marry (if I marry), I know he’s been worth the wait.

10. I’m confident. I know who I am. My birthmark doesn’t define me. I can wear makeup, or I can go without it. I’m more than my physical shell. I’m proud to be me, birthmark and all.

I’m not perfect, and I make mistakes… but I know I’m dateable. I’m beautiful both inside and out. Although I hope to continue to grow and become a better person, I wouldn’t change who I am. My life has been an adventure, and I know my journey has a lot of amazing things on the way.

I know not everyone with a facial birthmark or facial difference will relate to my list. Not everyone has such an awesome family, and not everyone feels confident. But if you’re struggling, I hope you’re encouraged to make your own positive list as to why you’re beautiful and/or dateable — because you are. You are one of a kind. You are valuable. You are a unique and beautiful person worthy of being loved.

You are especially worthy enough to love yourself.

The Beautiful Travelin’ Chick,

Crystal

Follow this journey on The Travelin’ Chick.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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An Open Letter to My Anxiety

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Dear Anxiety,

Although you haven’t “officially” been a part of my life until this year, I’ve felt your presence throughout my 17 years of living. I remember feeling you while I was alone in the grocery aisle, or while waiting outside a public bathroom for a familiar face to come out. Anxiety, you always had a way of sneaking up on me and stealing all the joy and fun out of situations. Like my family’s love for amusement parks. Because of you, I hate roller coasters. I’m always afraid I’ll get stuck on the chainlift or trapped in the harnesses. All I wanted was to enjoy spending time with my siblings and parents during these vacations; I don’t remember sending you an invite.

I’m normally not a person who speaks about hatred of something, but Anxiety, you’ve put me through a lot. It’s partially your fault I can’t trust people; I was left, lost, hurt and used a little too often for my liking. Anxiety, it’s partially your fault I was so desperate to seek attention. Through all the struggles in my past, you were always there to whisper in my ear that nobody cares. Or that I’m invisible. That people purposely ignore me. You tricked me into believing I had to fight for people’s attention; I had to put myself and others in harms way to get people to see me. Anxiety, I pushed a lot of people away because of that. So although I’m not a person who normally speaks about hatred, I think it’s fair for me to say I hate that you warped my thinking. I hate that you made me hurt and lose people in my life.

You know what you love to hold against me, Anxiety? The fact that I hate elevators. I get so frustrated when I think about them, and my heart immediately starts to race. Have you ever taken a moment and just thought about that situation, Anxiety? Thinking about elevators, just having the word pop into my mind, creates a petrified fear in me. I don’t even have to be anywhere near an elevator and I’m already afraid I’m going to get trapped.

I know you aren’t a person, Anxiety, but I can imagine you laughing at my irrational fear and how much power you have over me. This isn’t funny, Anxiety. You know it’s your fault when I get scared. Knowing that makes me even angrier — don’t you see the vicious cycle you’ve trapped me in? Do you know how hopeless it feels to sit in a classroom and have thoughts about dying? Or to be studying in the library and feel such insane weight you physically can’t get up from your seat? What about when you’re driving and thoughts rush into your mind of every worst case scenario in the history of the world? 

But I’ve realized something, Anxiety. I realized I couldn’t stand your presence in my life anymore. It hit me like a ton of bricks — you were ruining my life and ruthlessly sabotaging me. When you’re there in the morning it’s like you’re tying me to my bed, holding me back from conquering the day’s adventures. For weeks, I couldn’t even get out the front door to go to school without crying. Anxiety, when I noticed you were keeping me hostage in my own mind, I knew my battle with you was just beginning.

You see, I didn’t start fighting you back when we first met in the grocery store or outside a bathroom. I started fighting you when I realized I wasn’t living my life. While on the surface my life looked like mine, underneath it was controlled by you. The day I decided I was going to actually start living was the day I started fighting you. It was the same day I was sick of the panic attacks, sick of missing amazing opportunities and sick of constantly worrying about dying. From that day forward, Anxiety, I got out of bed every day and went head to head with you. And I’m slowly gaining more strength with the help of prayers, scripture, writing, calling people when I need someone to talk to, doing math problems when I need a distraction, and yes, even with the assistance of a little white pill. All those things by themselves won’t be successful in taking you down. But when I take them along my side and lead them up into the front lines, anything is possible. Each and every day I’m getting closer to destroying your reign over my life.

This is my life, Anxiety. I’m not going to let you dictate it anymore. It’s time for me to take control. Your careless attempts to make me weaker are no longer going to debilitate me. I control the reigns over my mind and my life.

Sorry Anxiety, but this train is leaving and you don’t have a ticket. Even if you sneak into my luggage for the rest of my life, so be it. I’m not going to let you ruin the fun for me anymore. This fight will end in my victory. You no longer have any power over me. More than anything, I’m free. You no longer define me. You no longer control me. You no longer have any power over me. Yes, I am free.

Sincerely,

Emma E. Welling

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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Why I’m Not an Optimist About My Son With Down Syndrome

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“We can still come back and win. It’ll only take two touchdowns and a field goal,” I said to my grandfather during one of the many brutal bowl games of my childhood.

“No. They won’t.” He sat with his arms crossed, defeat accepted, but he still watched the game to the end.

“You’re a pessimist.” I moved to the floor in front of the TV.

“I’m a realist,” he said.

A realist, it was explained to me, doesn’t think the worst will happen every time like a pessimist does. A realist takes life for what it is and accepts the whole package. A realist doesn’t invest worry and emotion into a lost cause; a realist deals with what is real.

The other day I was thinking to myself, if someone had told me — that young 10-year-old me — “In 35 years or so, your son (to be) will release a children’s book. A really great one, in fact,” I’d have likely nodded my head. Sure. Sounds good. No doubt, I was an optimist.

If then, only nine years later, as I sat in the hospital room having heard the words “Down syndrome” about the sweet son I had only just met, would I still have believed that future? Would I have believed it possible that we’d create stories together and he would outpace my imagination and storytelling skills? Well, yes, I think I would have still said, “OK.” Because, as people said, I was an optimist.

Five years after that, while immersed in the stubborn bureaucracy of the public school system, I fought for a classroom that would integrate and challenge my son. I knew then that there was talent, intelligence and ambition wrapped up in the makeup of my boy, and these traits required a push from his educators. The school couldn’t/wouldn’t accept this and I lost. Neither my insistence of my son’s needs and skill sets, nor my attorney’s request, got through the bureaucracy. 

The “system” didn’t believe in my son Marcus, but his family and friends did. We moved on to the Madonna School, where defeat was not an option, and soon Marcus and I began creating together on the weekends.

Now, here we are. Marcus is a 25-year-old with Down syndrome who just released his first storybook for children, “Black Day: The Monster Rock Band,” with an animated short on the way. And this is just the beginning; there are more stories and scripts to come, I’m sure, because Marcus is a creative, talented person with stories to tell. I knew this all along. 

So, like my grandfather before me, turns out I’m actually a realist.

Follow this journey on Grown Ups and Downs and the Grown Ups and Downs Facebook page.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and 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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When a Couple at McDonald’s Said I Shouldn’t Feed My Son in Public

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In 1993, we were living in London. My husband’s diplomatic career made us fearless about travel, even with two children, one of whom was medically complex with severe disabilities. We had an excellent treatment team at Great Ormond Street Hospital for Children and one day, my son Nicholas and I went there for a routine feeding tube change. The procedure was quick but painful, so I promised my boy a Happy Meal afterwards at McDonald’s as a reward.

With a shiny new tube in place, we walked across the square and down the busy sidewalk to the nearest Golden Arches. We found a table that could accommodate Nick’s small wheelchair and I ordered our meal. Nicholas is mostly tube-fed, but he loves to sample his favorite junk foods. We tore open the bag of food, marveled over his free toy and I began to carefully present small bites of burger and fries.

A young and uniformed staff member came toward our table looking frightened and ashen.

“Yes?” I asked. “Is everything all right? Is something wrong?”

He gulped. “I’m so sorry. That couple over there complained about you. They said you shouldn’t be here in a restaurant feeding your son. They said you should do that at home.”

My eyes widened. He continued, “I told them they had to move their seat. You stay here. I’m so sorry.”

Frankly, as they say in England, I was gobsmacked. I looked over at the complainers. They were old (probably the same age I am now). They were glowering at us – at me and my incredibly adorable 4-year-old son.

“Uhh?” Nick asked with a rising inflection. He wanted to know what all this fuss was about. “There is an older couple over there, Nick, who are not happy. I believe their mommies did not love them enough. I think they need our prayers.

“DEAR LORD…” I began with my head bowed and my voice amplified, “please forgive these very sad people who need more love in their hearts and more kindness in their actions. Amen.” Nicholas was laughing his head off. I’m not sure he understood what was happening, but there’s no question he “got” that his mom was mouthing off – in a good way, of course. We both giggled into our napkins and finished our fries with a flourish.

“Right!” I said to Nick. “It’s only 10 o’clock and I think we’ve accomplished a lot today!”

Over the years, we’ve had many dining experiences that have ranged from bad to excellent. But that day in London was definitely our “worst/best” one ever.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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How Starbucks Responded to My Problem With Menu Accessibility

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One summer while I worked at a marketing research firm in the mall in my hometown, the biggest thing to hit our area since sliced bread moved onto the second floor near the food court.

Starbucks, the ultimate in fancy coffee goodness, became a central hub for the younger crowd. Frappes, fancy pastries and smoothies galore. And I wanted to partake in it.

My first Starbucks experience was one that became all the norm when it comes to trying a new place. Let a few ahead of me in line and pick the one thing that sounds good. As someone who is legally blind, the wall plaque menu board is not my friend.

“I’ll have a caramel macchiato,” said the girl ahead of me.

“I’ll have the same,” I would reply when it was my turn.

Good thing I love caramel.

But caramel gets boring after awhile, and my “three people ahead” never yielded the variety I wanted. I’m the kind of girl who doesn’t like to advocate for myself because people will treat me like I’m a baby. I’ve had it happen before and I hated the thought of dealing with it again.

One day while on a break from a long day of field studies, I decided it would be the day to try something new.

I go up to the barista and asked what kind of drinks they had. I received an answer I wasn’t expecting.

“We got a menu right up there.”

I then asked if she had a menu that wasn’t up too high so I could read it. She said no.

“The menu is up there. Can’t you read it?”

I turned about 50 shades of red, embarrassed and ashamed. I made a joke about a new prescription on my glasses that didn’t take and went with my go-to drink, a caramel macchiato.

A few weeks later, that visit played on repeat in my brain. Long before smartphone apps were mainstream, I had no other options when it came to ordering a drink.

I wrote a letter to Starbucks via its corporate website explaining my problems and suggesting a change. Thankfully, the response was amazing and quick. Within a few hours, they sent me an email back and a phone call. They promised better training to that location, and I was sent a calorie menu, which should’ve been offered to me as an alternative ordering method in the first place. I also received $50 in gift cards so I can experiment with the variety that up until that point that I never had before.

A few weeks later, I noticed my experiences at Starbucks were so much better. The baristas became more patient, the options were laid out better, and the drinks were awesome… and still are to this day.

Nowadays, with technology and access to the Internet at the drop of a hat, my foodie travels have gotten better for the most part. I still get the stares and the questions regarding my ability to read, but not as much as I used to.

And yes, I still get a caramel macchiato once in awhile, but the possibilities are endless and I couldn’t be more thankful for the changes made in that Starbucks back home — and elsewhere.

Follow this journey on Legally Blind Bagged.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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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