Asperger Syndrome, Because of You I Have My Unique Treasure

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Asperger syndrome, because of you, I never know what the day will bring when it comes to life with my son.

Because of you, my family and I live in two different worlds, the “typical”and the “special” — never quite knowing where we fit in.

Because of you, it feels like we’re constantly running a race but falling just short of the finish line.

Because of you, I don’t know when the next meltdown will come. When it does come, I feel like it’s my fault. I should have done this or I could have done that… All I want to do is speak my son’s language and give him what he needs

Because of you, I don’t know if I’ll be able to comfort my son when he’s having a hard time, and it breaks my heart.

Because of you, I question what my son needs in any given moment, despite having a mother’s intuition.

Because of you, second guessing is a game I play all too well. It’s my living hell.

Because of you, I mourn things not looking the way I thought they should.

Because of you, I feel guilty when my frustration, fear, sadness and hopelessness shows.

Because of you, I have to constantly remind myself that despite my son’s abilities and achievements, he has delays in other areas, and I have to constantly adjust my expectations, all while balancing his potential and encouraging him to go as far as he can go.

Because of you, I’ve cried so many tears that could never be counted, just like the grains of sand on a beach or stars in the sky.

Because of you, moments in my son’s life have more meaning. From seeing my son walk for the first time when he was over 2 years old, to strangers embracing him for the unique, talented, loving individual he is.

Because of you, I don’t know what amazing thing my son will say, think or do next.

Because of you, I’ll hold my son’s hand even if I don’t understand. I’ll never stop trying, even through all of the crying.

Because of you, I get to live in my son’s world, a world where no one is old and instead of “Killing two birds with one stone” we “pick two flowers with one hand.”

Because of you, I’m more vulnerable. At times this can make me feel weak, but as I embrace the vulnerability I realize it’s actually making me stronger.

Because of you, I’m starting to embrace all the unique things about myself.

Because of you, my son will do things in this world I could never imagine. He is making and will continue to make the world a better place just by being who he is.

Because of you, I’m empowering my son to embrace who he is — not a diagnosis but a person who has great passions, talents, love and an amazing way of thinking that just happens to be combined with a sensitivity to sounds, challenges with social skills, filtering and expressing his feelings.

Because of you, I have my son, my unique treasure who I love beyond measure.

Editor’s Note: The title of this post has been changed to better represent the writer’s piece. 

For all of March, 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.

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If the Impossible Were Possible, I Would Do These Things for My Son

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Dear Jakey,

If the impossible were possible, I would erase the extra chromosome from your genetic ladder. I would change those fleeting yet powerful words first spoken to me minutes after your arrival on earth. I would have given you a different makeup, a different start, a different challenge.

Please understand, I would never give up the wonderful soul that you are. I would never give up the smiling, beautiful face I wake to every morning, or your sun-drenched hair that shimmers in the summer light. I would never change your infectious laugh, your sparkling sky blue eyes, or your rosebud-dimpled cheeks.

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If the impossible were possible, I would have spared you the suffering you have endured from your surgeries, the doctor visits, the testing and, most of all, being away from your home and family.

I would have cured your heart with the kiss of my lips, and your stomach with the whisper of my hand. I would take the pain you feel every day and the sleep you miss every night and turn it into magic.

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If the impossible were possible, I would give you the power to walk, talk and think like others your own age. I would teach you how to play baseball or show you how to ride a skateboard. Together we would sing songs and dance silly dances on the kitchen floor. I would give you a long and happy life.

I don’t want you to worry about being different or worry about your health. I don’t want to wonder what your future holds and where you might be after your father and I are gone.

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If the impossible were possible, I would ask God why he gave you that extra chromosome. I would ask Him why He thought I was a mother capable of handling a child with a disability. I’d ask why He thought a mother with bipolar disorder could possibly handle a child with so many demands, when I can barely handle myself.

I would beg Him to never take you from me. I would ask Him to watch over you, and give you the courage you will need to endure this sometimes troubled and unkind world.

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If the impossible were possible, I would ask for a cure for Down syndrome so that no other child would have to live a life that others may never understand.

Lastly, I would ask him to give humankind both patience and kindness so they may feel the same joy as I do when I see your beautiful soul.

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I’m Watching You, Autism. This Is What I See.

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Screen Shot 2015-03-15 at 11.05.37 PM I’m watching you, Autism.

Right now I’m looking out my dinning room window watching you “fiddle” in the front yard. You urge my 12-year-old son to pace back and forth while rubbing his fingers and hands together. Sometimes he rubs them together up by his nose, making him look like a little chipmunk. Every once in awhile he will wave to his younger brother and his brother’s friend playing basketball in the driveway. Seeing you this way twists my heart into a knot.

I think you first encouraged my son to fiddle when he was about 6 years old. He started doing it while I was making dinner one night. I asked, “Evan, what are you doing?” Matter-of-factly he replied, “I’m fiddling.”

Of course, fiddling is just a form of stimming. It helps him reduce the anxiety you cause and helps him decompress after a long day at school. Together, you two have worn an 8-foot path in our lawn.

Tonight, prior to this fiddling, I watched my son fight you, Autism. He was overcome by anxiety because he dropped a mint between the front seat of the car and the center console. He and I looked for it for ten minutes with a flashlight but simply could not reach it. I watched you pour frustration over my child, turning his cheeks red and forcing him to fight back tears. I’m not going to lie. I had no time for you in that moment. I raised my voice while saying, “Evan, you are not going to cry over a lost mint! This is a little problem!” For good measure I even added, “We are not going to live our lives this way!”

And so now you fiddle in our front yard, the two of you.

Autism, over the years I’ve watched you, and this is what I’ve seen.

You are anxiety, and you are empathy.

You are rigid, and you are helpful.

You are unpredictable, and you are joyful.

You are a loner, and you are endearing.

You are repetitive, and you are honest.

You are socially challenged, and you are admired.

You are brave.

Recently, you and my son stood in front of his sixth grade chorus class to audition for a solo for the spring concert. Evan loves to sing, and you don’t care what people think — a perfect combination of talent and courage. He told me the girls clapped for him.

And sometimes, the most amazing words come out of Evan’s mouth, like the time he declared, “Mom, all the years that I’ve been born have been my favorite.” I guess I need to give you a little credit for that, Autism, because you can make him see the world in a such beautiful way.

I’m still watching you, Autism. No doubt, I will continue to watch as you shadow my remarkable boy throughout his life. Fortunately, beyond the times of outdoor fiddling and lost mint frustrations will be those glorious moments where my son Evan sings courageously in front of a crowd.

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.

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I Hate You, Joubert Syndrome, But I Need to Thank You for a Few Things

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Dear Joubert syndrome,

You’ve turned my life upside down. Over the last five years I’ve cursed you oh so many times. I’ve called you every name in the book, cried about what you’ve done to me, my family and most important, my daughter.   But I’ve never gotten the chance to say thank you…

Yes, you heard that right. Among all of your hate mail, this is a thank you letter. You’ve robbed us of many things, but what you gave us is so much more valuable.

You robbed my daughter of her language skills; she’s nonverbal at 5 years old, and I curse you every time I think of the real possibility that I may never get to hear the words, “I love you, Daddy.” But in return you taught me to “hear” more than just her words, to pay closer attention to her and understand her world more than I ever would have otherwise. You have taught me what it means to truly understand a child and the world they live in.

You’ve robbed my daughter of her balance and coordination; she struggles to accomplish the simplest of milestones that others take for granted, such as sitting independently and walking and feeding herself. But in return you’ve taught me to appreciate her every accomplishment, to marvel at her determination and see her inner strength.

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You robbed me of my initial vision of what being a father would be like and my hopes for what I would see my daughter become. I spent a lot of time trying to rid your from our lives and “fix” my daughter, but you showed me I was the one who needed to be fixed, and you fixed me, my views on life and my views of those who are different. Instead of seeing how someone walks funny, I now see someone who has worked hard and overcame so much to be able to walk at all.

You’re the mutual frenemy of so many amazing people around the world. People I would never have even crossed paths with if it weren’t for you. Thanks to you, I now not only call many of them friends, I call them family.

You’ve robbed my daughter of all those things I thought were the most important things in life. But in return, you showed me I was wrong about what’s really important and showed me what truly matters.

You’ve shown me strength I didn’t know I was capable of, love I didn’t know I was missing out on, hope to accomplish things I never thought were possible, and a passion to focus my life on.

So in short, Joubert syndrome, you’re part of my family now. There are times I want to deny you and claim that you don’t define my daughter, but the truth is you’re a part of who she is at the core. To deny you is to deny her and everything extraordinary about her. My relationship with you is a marriage, one without the possibility of divorce, and you’ve made me, my daughter and everyone we meet along the way, better people. And for that I thank you.

P.S. I still hate you though.

Sincerely,

The proud father of an angel

For all of March, 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.

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6 Films That Feature a Main Character With Cerebral Palsy

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March is Cerebral Palsy Awareness Month, and to celebrate, The Mighty decided to research five films released over the last 30 years that tell a story about someone living with cerebral palsy. Take a look:

1. Margarita, With a Straw (2014)

Laila (Kalki Koechlin) is an aspiring writer and lyricist who was born with cerebral palsy. She lives in India with her family until she’s accepted to New York University on a full scholarship, at which point she moves to Manhattan with her mother. In the city, she unexpectedly falls in love and begins to rebel against the constraints she’s lived with her entire life.

The film centers on Laila’s efforts to live a normal life despite her cerebral palsy. It received praise for making her disability a significant but not overwhelming aspect of her character. “Our heroine certainly has physical limitations and related phycological setbacks,” Dennis Harvey writes in his review for Variety. “But it’s her adventurous spirit (abetted by supportive family and friends) that sets the tone in [director] Shonali Bose’s winning sophomore feature.”

2. Enter the Faun (2014)

“Enter the Faun” differs from the other films on this list because it stars an actor living with cerebral palsy. Gregg Mozgala was born with the condition and had 12 years of physical therapy before working with Tamar Rogoff, a choreographer who, within eight months, changed the way Mozgala walks. Rogoff directed and produced this documentary, which recounts her experience training Mozgala to become a dancer in a piece called “Diagnosis of a Faun.”

Rogoff and Mozgala’s story challenges barriers associated with disability and has prompted a movement to inspire others to do the same. The film’s creators founded the “Cerebral Posse,” an organization that encourages people living with cerebral palsy to get together in their area and learn from each other, discuss issues facing their community and participate in the arts communities.

3. War Eagle, Arkansas (2007)

Enoch (Luke Grimes) is a star baseball pitcher with a speech impediment. Wheels (Dan McCabe) is his witty, talkative best friend with cerebral palsy, who’s nicknamed for his wheelchair. As their high school graduation nears, each of them worries about what comes next. When Enoch considers leaving their small town of War Eagle to attend university on a baseball scholarship, Wheels grapples with the fact that he has fewer options and considers what his future would hold without his friend.

The two support each other throughout the film, but Wheels, with his humor and confidence, serves as Enoch’s voice of reason. He helps Enoch work through his social anxiety, prompts him to ask out a girl he likes and encourages him to stand up to his domineering grandfather. “I don’t care if you can’t get out a full sentence,” he tells him in the trailer below. “Don’t let your grandpa do all the talking.”

4. Door to Door (2002)

Based on a true story, “Door to Door” is about the late Bill Porter (William H. Macy), a man with cerebral palsy who, despite being told repeatedly he was not employable, became an exceptional door-to-door salesman. Day after day, Porter put his physical limitations aside and walked 8 to 10 miles a day, slowly winning over customers until he became one of the top salespeople for J.R. Watkins grocery distributor.

To prepare for the roll, Macy, an able-bodied actor, met with Bill Porter and did some research on cerebral palsy but acknowledged how difficult it was to act out the disability. “I realized pretty early on that whatever I did would have to be stylized because, well, try as I may, it is really hard to imitate something like that,” Macy told ABILITY Magazine.

5. My Left Foot (1989)

This drama is based on the 1954 autobiography of Christy Brown (Daniel Day-Lewis), an Irishman with cerebral palsy, born into a working class family in the 1930s. The film follows Brown, who can only control the movement in his left foot, as he struggles to find his place in the world. He eventually goes on to become a remarkable writer and painter.

Day-Lewis, who is known for his method acting, went to admirable lengths to portray Brown as accurately as possible. He remained in character as a man with cerebral palsy throughout the duration of the production — he never left his wheelchair and had to be carried across the set and spoon-fed by the crew, The Independent reported. Hal Hinson summed Day-Lewis’ performance up best in his review for The Washington Post:

Daniel Day-Lewis clenches his teeth so hard and blinks so ferociously that you’d think he was trying to force steam out of his ears. With his frail body straining against itself, his neck twisted and his hands stretched out to full length, he tortures each word out of himself, as if he were ripping them out of his flesh. And we feel that in watching him we’re watching the essential struggle — not just a man fighting against his disease, but the fight to communicate that everyone wages.

6. Gaby: A True Story (1987)

Gabriella Brimmer was born with cerebral palsy in Mexico in 1947. After a hard-won battle to attend conventional school to learn to read and write, she became a published author and was one of the first to advocate on behalf of people with disabilities.

“Gaby: A True Story” is based on Brimmer’s life and work. The film follows Gaby (Rachel Levin) as she learns to communicate by spelling out words on an alphabet board with her big toe. She goes on to fight tirelessly to attend public school rather than the separate school for students with disabilities. Though the film was released almost 30 years ago, it evokes topics that are still relevant today, such as the right to an equal education for students with disabilities, the right to live independently and how people with disabilities relate to their families.

How well do you think these films portrayed cerebral palsy? Let us know in the comments below.

Read more about “My Left Foot” and other films that portray disability here.

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A Message for My Daughter’s Tuberous Sclerosis

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blogger-image--394078677 Dear (not so dear) Tuberous Sclerosis,

I despise you.

You’ve brought pain to my family since the day your name was so gravely spoken. Your “incurable” tagline ripped through my heart like a million razor blades, tearing it to shreds. You’ve made me doubt myself and my ability to care for my own daughter. Your dooming prognosis made me want to run far away. I still feel ashamed when I think of those fleeting thoughts.

I’ve never been faced with a problem I couldn’t fix or at least attempt to fix. You, however, are a different creature. I can’t fix you or your damaging effects that have taken home within my daughter’s innocent body.

As I lay my body on my daughter, attempting to restrain her for an EEG, I feel nothing but hate for you. As each tear falls from her face, I carry more and more anger. Within those moments you make me want to give up. I want to throw my hands in the air and wave the white flag, surrendering ourselves to your overpowering existence.

But then my daughter, who has been your prey, shows her amazing strength and cracks a smile. All of a sudden the anger, pain and grief leave the room. You can attack her from all sides, and she still has the ability to show her strength. She is stronger than you. Which makes me stronger than you. Her smile returns my strength and makes me once again renewed and ready to tackle whatever you throw our way.

You will not defeat us. We will not give you that power. We will fight for our daughter and the thousands of others who you’ve attacked.

You may be a part of our life, but we refuse to be defined by you.

You are messing with the wrong family. We won’t go down without a fight.

Sincerely,
The Lens Family

For all of March, 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.

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