The Autism Myth I’m Debunking Every Single Day

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I’ve met many teachers, therapists, aides, doctors, professionals, friends and people in general throughout my journey. The ones who stand out the most in my mind are the individuals who went above and beyond to help me. These individuals were patient, they stayed with it and never gave up on me. They believed in me, they trusted me, and in turn, I trusted them.

I know the days were and still are not always easy. I’m sure there were days you went home tired and frustrated. But you persevered, you continued to help me, even when you were not quite sure how. You asked me how you could help. You never assumed anything; you presume competence always.

I’m a smart, funny, kind, caring, loving, helpful, creative, respectful, trustworthy, young lady who has a smile that can brighten a room. I have a heart of gold. I’ve encountered many obstacles throughout my life, and I’ve overcomes and continue to learn and make progress,

One challenge I’ve faced is people’s assumptions. You see, just because I appear so high functioning at times doesn’t mean my struggles are not real. Just because I am 22 years old, doesn’t mean I’m done making progress; I’m debunking that myth each and every single day. So next time you start to think, Oh, they’re too old to make any more progress, or they’re too old for me to work with them, think of me, and remember my story.

I know supporting me and teaching me can be a challenging task at times. Thank you for taking the time to see a young lady who has potential. Thank you for believing in me, thank you for noticing my progress. It means the world to me. Know I care about you and appreciate you.

Love,

Chloe

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To the College Basketball Players Who Insist My Son Be in Their Team Photo

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Like every new dad, as I held my newborn son, I dreamed of teaching him to play catch, shoot a basketball and ride his first bicycle. But Max was different. A premature twin, I couldn’t hold him for months, and when I did, he fit in my two hands.

A few months later, as a first-time head men’s basketball coach at Salve Regina University, I was readying my team for practice. Minutes before we were to start, I found out Max had been diagnosed with cerebral palsy. Max was 9 months old, and I was five months into my head coaching career. Standing before a group of fit and able-bodied young men, I started my usual practice warm-up address. But that day was different. As I began, I informed my team of Max’s diagnosis. And I began to cry. Many players began to tear up with me. After a couple of minutes, I told them we needed to have a good practice because Max would never have a chance to have a good practice. Max became an inspiration to my teams for the next six years. The players viewed Max as their teammate. He’s present in every championship photo because the players insisted he be. When I left coaching – and for the eight years that followed – Max had no opportunities to be included in groups of able-bodied people. He withdrew, and his physical condition worsened. That changed in 2013 when Max became part of Northeastern University’s men’s basketball team. A new group of players welcomed him as their teammate. I had my son back. His life changed – and so did theirs. 

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Max is 15 years old now, and his relationship with his Northeastern teammates continues to mature. He’s learned a great deal from his interaction with them, which includes attending home games and practices.  What has really been special has been when the team and coaches go out to Max’s school to see Max in action. Max attends the Beverly School of the Deaf: The Children Center for Communication in Beverly, Massachusetts, and to have his teammates see his day-to-day has been enlightening to all. It’s been a great opportunity for Max to introduce his teammates to his friends and school staff. The school visits also double as a fantastic opportunity to see Max’s school day through his eyes. His teammates meet Max’s service providers, teachers and support personnel, becoming more connected to Max than before they arrived.

Screen Shot 2015-02-15 at 9.56.48 PM In Max’s short time with the team he’s learned to regulate his emotions. Before, due to his lack of ability to verbalize things when he was frustrated, Max was prone to a temper tantrum when things did not go how he wanted. He’s learned that being part of team means working through difficult situations as a group and supporting those beside you. When you’re sitting on the bench of a live game you have to be able to regulate your emotions and support your team. Max did this for the first in his life while playing Harvard University in December. Since then, he’s matured before my eyes, and I’m not sure what other possible situations would have taught him this most important life lesson. Now I feel we can confidently prepare for a life after school. 

Because of this experience, we’ve created You’re With Us!, a nonprofit organization where our mission is to create inclusion opportunities with able-bodied college groups for young adults with disabilities. Our goal is to open up opportunities to more people like Max who are excluded from social opportunities due to their disability. We also charge the college group with creating a Positive Experience Design (PED) to help the individual successfully transition from school to adult life. 

For all of February, 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. No gesture is too small! 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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The Top 3 Things I Won’t Tell My Kids

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I’ll never forget the day I picked up my perceptive 3-year-old daughter from preschool, and she said a combination of words that left me dead in my tracks.

“Mommy, why am I different than the other kids?”

I looked back in the rearview mirror and saw tears streaming down her little face. I had to pull over. I momentarily felt verbally paralyzed and wanted to cry myself. I asked her to clarify to make sure we were talking about the same thing before I responded. I know people say kids are little, resilient and not aware, but I disagree. When she was young, I had noticed my child had already gravitated towards babies who were not as mobile and didn’t try to keep up with kids her age. I think she knew her physical abilities and leaned towards those she could keep up with. Over time, the questions have increased and gotten harder. I do my best to give age-appropriate explanations about the challenges we all face in our house. I know one day I need to give more, and maybe that day won’t be as hard as I worry it will be. I just know how cruel the world can be. As a parent, while all people are unique and possess different strengths, telling your child they are “different, yet not less” is a unique moment. It needs to be handled with care and tact. While I know that day is approaching, and I don’t know exactly what I’ll say, here are the top three things I won’t say:

1. A diagnosis defines you.
A medical diagnosis is merely a set of words. It should never be used for society to set limits upon others or individuals to set limits upon themselves. Always strive to go beyond and soar through the sky that people thought you could never reach.

2. “Different” means “less.”
In our home, we live loud and proud about the strengths we all possess and the struggles we all face. Life is not easy, but it gets easier if you have confidence in yourself. Everyone has struggles, and while they may not be the same and some may want you to think they’re perfect, nobody is. We’re all different and beautiful in our own right. Never treat anyone like they’re less than you, and always expect the same treatment in return.

3. It was hard on me.
I have to think long and hard every time I write a blog post. While parenting can be difficult to start with, adding in some of these extra worries, specialist, therapies and daily struggles can at times make this feeling seem elevated. However, in no way would I trade it for the world. I always tell people therapy is our sport. Then I smile. Those who know me get it. One day I was with a friend talking about how I can at times struggle juggling everything. He told me, “You’re right, not everyone has to do that, but not everyone gets to either.” I will never forget it because it was so beautifully put. It has and will always be an honor to have helped my kids take on challenges and celebrate like there is no tomorrow when they conquer them. That’s exactly what I will want them to know.

I don’t know everything but I will be open and honest with my children, even if that means having some tough conversations or moments. I will tell them about the struggles I face living with an autoimmune disease and all I need to alter to reach my goals. Today and always I will let them see that I too am an overcomer. I too have faced struggles, beaten the odds and I will face many more. Perfect doesn’t exist, but awesome does, and that is exactly what we all are!

Follow this journey on My Extraordinary Journey.

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To the Little Girl Who’s Teaching My Daughter How To Be a Friend

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After my daughter, Lola, was born and before the roller coaster of health issues came to fruition, I sought out a group of women who had babies. It was a way for my daughter to begin socializing, and it was key to maintaining my sanity as a new mother. Our children would roll around on the floor together, and we’d talk about things like how breastfeeding was going, what kind of nap schedules we were implementing and so on. I never thought much about the fact that Lola didn’t really interact with the other babies. I mean, what was she to do? Come up with sophisticated games to play at just a couple months of age? But now looking back a few years later, many red flags should have gone up. She didn’t look at the other babies, she didn’t try to steal their toys and she didn’t coo with them. She was just sort of in her own little world, and of course she was — she didn’t have the ability to understand the use of her vision.

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Even with Lola’s diagnoses, we would continue to put her in social situations with other children because, special needs or not, she still should be set up to make friends, and she genuinely liked being with other kiddos. We started small with just taking her to a gross motor skill class at her therapy agency. From there, we began to drop her off at Child Watch at the YMCA. We soon enrolled her in a three day a week/couple of hour a day preschool. And you could tell in each environment she began to blossom. Not only did she like being around the kids, but she was learning from them with the use of her sight. It took some convincing, but when faced with the decision to enroll her in an all day preschool program, we reluctantly agreed, and I’m so glad we did because she loves her school peers. All of these opportunities to make new buddies have been good for her, but there’s one place where she never had a friend — and that’s at home.

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Thankfully for Lola, she’s finally getting to experience what it’s like to have a friend of her own and that’s because of a little girl named Paisley. Paisley is our 4-year-old neighbor whose wonderful mom cares for Lola on occasion. Lola and Paisley became buddies over the summer, and it has been a true joy to watch their friendship blossom. Paisley is teaching Lola more about friendship and social etiquette than I ever could, and she’s brought such happiness to our little girl’s life.

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A few days a week, Paisley will ask to help Lola get off of the bus, and we’ll go on to play for a couple of hours. I say “we” because Lola is still trying to figure out this friend thing. I certainly give them space, but social etiquette is typically not something that comes natural to children with visual impairments. Quite often things likes turn-taking, sharing and other social cues need to be learned over time. And since Lola doesn’t have the ability to use her words yet, I help bridge that communication gap. Thankfully, Paisley understands all of the complexities of being Lola’s friend.

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Paisley is the youngest of three kid,  and her mom has watched other people’s children for years so Paisley is “tolerant” of Lola. I say tolerant because there are days when that’s what it is. When Lola won’t give Paisley her own personal space, Paisley will simply move. If Lola won’t stop playing with Paisley’s hair, Paisley will simply say “no Lola” and go about her business. If Lola grabs Paisley’s toy, Paisley will quite often just find something else to play with. If Lola eats Paisley’s food, Paisley will just ask me for more. Paisley and I are working on teaching Lola how to be a good friend, and Lola is starting to get it, but it will take time. Paisley understands that Lola’s brain works a little bit differently, and she understands that Lola can’t “see” the way she can see. Paisley grasps the concept of inclusion more at the age of four than most adults probably ever will. It is one of the most beautiful things I’ve ever witnessed.

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Lola has come so far in the six months since Paisley has been coming over to our house. Just a few days ago Paisley walked in the door, and Lola began to say “Paisley” without being prompted. Lola wants to use the potty when she knows Paisley has used the potty. Lola intently watches Paisley as she plays with toys and tries to mimic Paisley’s actions. Paisley has patience with Lola and genuinely wants to help her. Whether it’s holding her hand while going up the stairs or translating what she thinks Lola has said, it’s a wondrous sight to see such compassion from someone so young. And when Paisley leaves for the day, Lola hysterically cries at the window because she misses her friend. It breaks my heart to watch, but it makes me happy that she has found her person.

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Just as Lola is learning from Paisley, Paisley learns from Lola. Most recently, we were all reading books and Lola had a book in Braille. I showed it to Paisley and explained that some people read with their hands and not with their eyes. Well, over the weekend, Paisley made Valentine’s Day cards, and she began to poke holes in one of them. Later she showed her mom and explained, “This one is for Lola because this is how Lola may read someday.” She had Brailled the card!

As a mother (especially a mother of a child with special needs), all you want is for your kid to be included. And while Paisley may not understand it now, her ability to appreciate Lola for who she is has been such a blessing to my family — especially for Lola. The friendship between Lola and Paisley may not be “typical,” but the beautiful thing about their friendship is that they are deciding the parameters of it just as we do with our friends. No two friendships are alike and that’s what makes our connections unique and authentic. The connection between Lola and Paisley is one I can only hope will last for many years to come. Lola will need champions like Paisley in her life especially because kids can be downright mean. But all it takes is one person to stand up to the crowd for others to see that a beautiful person worthy of love and acceptance is in there. Thankfully, Paisley already sees Lola for the amazing individual that she is and it brings such happiness to my heart.

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Powerball Jackpot Winner Is a Mom Who Truly Needed It

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Sometimes good things happen to the right people.

When Mary Holmes realized she may have one of three winning lottery tickets in the $564 million Powerball jackpot, she “thought [she] was going to have a heart attack,” she told WECT. The 26-year-old is a mother of four from Brunswick County, North Carolina. She recently had to leave her jobs at McDonald’s and Walmart to care for her kids, one of whom has cerebral palsy, WECT reported.

“I’ve been struggling since I had them,” Holmes says in the video below. “But I wouldn’t trade [anything] because they’re a blessing.”

If confirmed, her ticket will be worth $188 million, according to the video below.

I’m ready to embrace the change,” she told WECT. “I’m very grateful for what’s about to happen for my family.”

h/t Mashable

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Why I’m Not Judging the Mom Who Chose Not to Parent Her Baby With Down Syndrome

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I’m sure you’ve probably read the story about the mother who decided immediately after her son’s birth, that she didn’t want to parent her baby with Down syndrome. Then she allegedly divorced his father for keeping the baby. It was all over Facebook last week, along with everyone’s opinion of this terrible, awful, no good mother.

Please stop judging the mother.

You didn’t just deliver that baby, you don’t know her pain and you don’t have to live her life in her country. It’s easy to make a comment on Facebook like “heartless baby carrying machine” and “the baby is better off without her” and then go on with your own life feeling like you advocated for her child in some way. I’m not condoning her decision, but really none of us have any idea what she’s going through.

One of the things I struggle with most about being a mom within the special needs community is how everyone is willing to show off how fierce their love is for their child, but no one will say how overwhelming their doubts are. There is a dark side too. The only author I’ve found who dared admit it is Gillian Marchencko when she wrote, “I know of other mothers who had children with special needs, and right away they loved them and decided to fight for them. That’s not my story.” After I read those sentences, I remember whispering back to the computer screen through tears, That’s me too. This is the fight of my life. I’m struggling to accept this too.

It’s hard to love. It’s hard enough to love your “normal kids” well on a bad day. When they throw a shoe at you, refuse to eat the food you cook, melt down over getting buckled into a car seat, break a brand new lamp from wrestling in the family room. As a parent you love a lot, and you don’t always get it in return. Think of how much harder it is to love a child with special needs in a society that places great shame on families with kids of disabilities.

This story is getting a lot of publicity. The dad is raising a lot of money on GoFundMe. The mom is being judged everywhere on social media platforms. I think as a culture we need to be a little more responsible about how we use our words on Facebook and Twitter because by judging her, we’ve made it even more difficult for this momma to change her mind. What if she has regrets later? What if down the road she decides she wants to go back? There’s now even more stigma facing her. And remember, one of the biggest factors in her decision to leave her baby in the first place was the shame and pressure her community placed on her. We’re only perpetuating the problem with our words.

We tend to assume that the overwhelming feeling of love for your baby is immediate at birth. If you don’t feel that way, then you are a horrible mother. Yes, there is a natural bond that a mother forms with her child and a love that goes deeper than devastating diagnoses. But sometimes love takes work. Sometimes love is a choice and you have to make it over and over again every single day.

When my son was born I heard his weak, high pitched cry and deep down I thought, “That’s not right.” I saw the back of his head with a big birthmark and strange bump sticking out and again I thought, “That’s not right.” I tried to dismiss those thoughts. Because I was his mother. I told myself, I’ll still love him. I said that within the same hour he was born. In the OR all drugged up and sleepy, I’ll still love him. I was willing myself to love him because intuitively I knew something was off about this child from moment he took his first breath. I will still love him. I will.

I don’t know how I would have made it through the first year of his life without the unwavering support of my friends and family. They held me up when I couldn’t/didn’t want to keep going. They believed there would be good in the midst of all of the pain and struggles ahead. They prayed for me when I had no words for God.

I know y’all think this father is admirable to say he wants to keep his baby with Down syndrome. I do too. I think he’s doing the right thing, and I think he’s going to need a heck of a lot of support (and not just in the form of money).

I also think we need to show a little bit more love and compassion for the mother. She’s hurting. Bad. And she wants it to all go away. In her mind the way out is to give up the baby and leave her marriage. She’s facing tremendous pressure from her family, the people who should be supporting her right now. Again, I am not saying she did the right thing — only that we all need to be a little more graceful. We all have made decisions others don’t — and won’t — understand.

Maybe you know what it’s like to deliver a baby with a devastating diagnosis, maybe you got your diagnosis much later, maybe you’re lucky enough to never have received a diagnosis. Regardless, you don’t know what it feels like to be that mother.

But you do know what it feels like to be judged.

If you’re honest, you also know how hard it is to make a choice to love even when the feelings aren’t there.

Let that be the place where your empathy grows.

And please, let’s all stop judging mothers everywhere.

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