Our Cha-Cha Dance With Autism

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This is my happy place. This is what wakes me up in the morning; it’s what turns my frowns upside down and what makes me a better human. This is my family.

I love this photo. We had been wandering through an exhibition. Just before we made our exit, we were ushered into line for our turn in the photo booth. We were crammed in like tuna fish awaiting instruction… Was it the stark white interior, the singular menacing lens staring at us from the opposite side of the booth, or the high-pitched shrill of the camera’s operator? Whatever it was, when we found ourselves on the business end of a camera flash, our individual personalities shone through and were captured in an instant.

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The strange bald fellow on the left is yours truly, the stunner on the right is my wife, Leigh, and in the middle, well, that little guy is our son, Nicholas. Oh, and the one with the wings is Rip. He and Nicholas have been inseparable for around six months so at this point, he is family, too.

Pardon me if I sound conceited, but I love us! We are different colors, Leigh and Nic grow hair on their heads and I grow it from the bottom of my lip (sadly… more recently the tops of my ears too)… one of us even has a pair of wings! But besides the physical differences, we are all blessed with a good old fashioned dollop of quirkiness, making us a force to be reckoned with on any family outing. We are all a little different and strangely, these differences have kept us together.

Our son, Nicholas, was diagnosed on the autism spectrum a few months shy of seven years ago. When I think back on years past, man, we have come a long way. Our routine is silky smooth. Wait, it’s probably more “cha-cha-esque.” When we are on top of things, we masterfully take our two steps forward. When we suffer a setback, we take a step backward, but somewhat gracefully and in time with life’s music.

Obviously it wasn’t always like this… in the beginning, we flipped and flopped around. All three of us in a little over our heads, less cha-cha and more an awkward dance troupe found in the blooper reel of a ’90s reality dance show.

Autism can be a dance full of challenges, but we all have our challenges, don’t we? The point is, we became better with practice. We simply needed to find our groove, individually and as a family.

Unfortunately, life is not all dance competitions and photo booths. The very people that I am so devoted to can overwhelm and be overwhelmed. Trust me, I am a self-confessed helicopter parent. Sometimes I annoy myself… We have all found our escape when the going gets tough. Leigh disappears into her music; my kid finds comfort in sculpting dragons and planes from anything he can lay his hands on. I ride a unicycle.

Importantly, we have learned to give each other some breathing room. Enough room to be different, to be ourselves, and enough to three-point-turn back to each other.

My name is Shaun Murphy. I love my family.

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I Was Nervous They Picked My Brother as a Joke. I Didn’t Have to Be.

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Growing up, I was always “Chris’s older sister.”  It’s not common to be someone’s “older sister,” especially when you’re three years ahead of your brother in school.

I was the shy, timid kid who would hide behind her mom’s legs to avoid meeting new people. On the other hand, Chris is outgoing, loud, and friendly. He’s well-known on my college campus, even though it’s 3.5 hours away from home. I often joke that college is the first place that I could really be “just Lindsey,” rather than “Chris’s sister,” but he still managed to sneak his way in there, too.

One thing I’ve learned about Chris over the years is that he doesn’t care what other people think. Now, I’m not saying this is always a fantastic thing, but it is something that I deeply envy at times.

Last year, my family was surprised to learn that Chris (completely independently) auditioned and was accepted into the high school talent show. Chris loves to sing. I hear him sing when I’m driving him in the car, at 6 a.m. when he wakes up and starts blasting his music, and even in audio messages he texts to me when I’m at school.

Unfortunately, he (very much like myself) does not really have any sense of pitch or tone, though he has been working hard to become a better singer. So you can imagine how surprised my mom and I were when we found out that Chris sang a One Direction song as his audition for the school talent show and was accepted.

After surprise, the next thing I felt was pure, unadulterated fear. What if they only selected him so that everyone could make fun of him? What if this was all some big joke, and when he got up on the stage during the performance he would be booed? Why did they pick him to sing over other students?

While I was freaking out and pondering this, my mom was doing a similar thing. Her thoughts were probably a little more rational, but again this was Chris, the kid who is sometimes so off-pitch while singing that I have to turn off the radio while driving because it’s distracting (sorry, buddy!).

Despite our fears, Chris was cool, calm, collected and REALLY excited. He wouldn’t let us watch him practice (which just added to our own fears), and planned his whole outfit for the performance by himself. When the day finally came, and his act was up, I almost had to leave the auditorium because I was too nervous about what was about to happen. However, to my surprise and joy, the people loved Chris, even if they didn’t love his singing! He had people smiling, laughing, singing and clapping along with him, and got just as much applause (if not more) as all of the other acts.

Over the years, I’ve realized that I’ve been a little overprotective, but isn’t that what a big sister is supposed to do? While Chris is out on stage singing his heart out, not realizing or caring what other people think about him, I’m going to be in the background worrying about the reactions of others. I’m learning that the great majority of the time, the anxiety I feel about other people accepting Chris is unnecessary, but part of my role as “Chris’s older sister” is always going to be protecting him, and that is a job that I’m prepared for.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My Dear Child, I Have a Confession…

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My dear child,

I have a confession.

Throughout the eight years you’ve been in my life, I’ve prayed and longed for you to be healed from all your diagnoses, illnesses and struggles. I’ve yelled at God for allowing my sweet, innocent baby to come into this world with such life-altering afflictions. I’ve traveled the world seeking treatments to help you overcome these diagnoses. I’ve pleaded with doctors for answers and to save you from distress. I’ve always wanted you better.  That’s all I’ve ever dreamed of. A better you.

As I was lying in bed early this morning, I could feel your warm, plump hand against my shoulder. You were stroking and patting my shirt in what seemed like an attempt to wake me. I turned around to find you awake with your bright sparkling eyes blinking happily.  I kissed your perched lips good morning, and you quickly returned a kissing sound to me. Then that signature toothless smile came. We giggled and hugged and made the most of our alone time as I brushed your perfect dirty blonde hair with my fingers. I loved every second of it.

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These are the moments when things become clear to me. Crystal clear. Although I pray for a better you, I know I shouldn’t. I believe God’s plan for you is so much grander than I could ever fathom. I believe He sent you here to this place we call Earth filled with so many people who long for hope and love and peace, for a specific purpose. You were destined to be mine. I believe God handpicked you to come into my life and change it; it was up to me to decide how.

I have to admit, the first few years with you were rough. You cried all. the. time. You puzzled me. You pushed me to my limit. You made me question everything I was brought up to believe in. I couldn’t understand the why or how. But you my child, with your persistence and will and love for life, you changed everything. I’ve watched you suffer. I’ve hit my knees asking God to make it stop. You’ve endured back-to-back hospital stays, agonizing seizures, gruesome surgeries, relentless needle sticks, tests after tests — things no one should ever have to live through. Yet you, my beautiful child, you endured these things and then you smiled a smile that knows much more than I do.

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Years have passed, and our life together has crystalized. You’ve learned how to navigate your life and your courage amazes me. I’ve seen miracles performed on your little body, and I’m just in awe. You smile through it all. Your joy is infectious. Having you in my life has made me a better human being. You’ve deepened my faith without ever having said one single word — all from being exactly who you are, no more no less. I’m eternally grateful for you.

I go about sharing your testimony to our family and friends and to anyone who will listen because I want others to experience you. So I lie here watching you wave your hand in the air, feeling the wind from the fan and contently clicking your tongue, and I think to myself how I could want a better you. It isn’t possible. You’re perfect. I’m so sorry you can’t enjoy life the same way others boys do and play ball with your brothers.  My momma heart wants you to have sight and walk and talk and be a typical kid. While that would be absolutely amazing and a dream come true, it wouldn’t be you. I wouldn’t be who I am. And the thousands of other lives you’ve touched wouldn’t be themselves either. You’re our warrior, and you teach us to appreciate the small things, find the blessing in every situation and love unconditionally. You make us better.

I have days where I struggle with heartache for you, which I know is completely nothing in comparison to what you endure. I cry. I pray. I hold you close to me breathing in your goodness. Then just like a drug, I’m surrounded by grace, and I’m thankful. Thankful for you and our life together and the joy you bring to everyone you meet. I’m once again reminded of your perfect purpose here, and the heartache subsides.  Knowing this, I have to confess, my precious child, I can’t say I want you better because you’re exactly the way I believe God intended you to be. You’re perfect.

I love you.

Momma

A version of this post originally appeared on My Blessed Little Nest.

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Michael Kelley Receives Flood of Support Following Varsity Letter Controversy

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As The Mighty previously covered, a controversy has been brewing at a high school in Wichita, Kansas after school officials asked a student with Down syndrome and autism to remove his letterman jacket because he was wearing a varsity letter. The student, Michael Kelley, is not a varsity athlete, but does participate in special needs basketball. However, at his school, students with special needs cannot currently earn varsity letters.

Kelley’s story has gone viral and a hashtag called #GiveThemLetters is trending with people from all over the world voicing their opinions.

After hearing about the controversy, Adrian Griffin, a former East High athlete and a current assistant coach for the Chicago Bulls, decided to show his support for Kelley, KSN reported. Griffin donated some autographed sports paraphernalia to be auctioned off with the proceeds going toward Kelley’s special needs basketball team.

“Donating my jersey, a 2014-2015 signed Chicago Bulls ball and a Derek Rose bobble head to East High’s special needs basketball team for auction for new basketball jerseys,” Griffin wrote on Instagram.

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Via Instagram

“I can not tell you in words how it makes me feel that someone who does not even know my son or these other students would step out and stand up for them like this,” Kelley’s mom, Jolinda Kelley, told KSN News.

Amidst a lot of criticism, including a Change.org petition with over 45,000 signatures, East High School Principal Ken Thiessen released this statement saying that Kelley has been allowed to wear his jacket in the school hallways since the incident, and that the district is in the process of creating league-wide standards for all high school athletes to earn letters.

Hear more on the story in the video below: 

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I’m Not ‘Less Fortunate’ or a ‘Great Inspiration.’ I’m Me.

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Dear Cerebral Palsy,

I don’t know life without you, and some people pity me because of you. They shouldn’t. I believe that I am God’s creation, fearfully and wonderfully made. I think he does not make mistakes, and he created me with you a part of me. A part of me, but not who I am, and that’s an important distinction.

You cause me problems and frustrations, to be sure, but nothing that should cause me to despair. I have been asked if I walk in my dreams, and the answer is no. Perhaps that is because I’ve never known another reality, but I’m OK with that.

It wasn’t always that way. But as you and I have grown up together, I believe that God has shown me that you are a gift to me that I can use to bless and serve others. You’ve given me limitations that prevent me from putting my own shoes on, shaving independently, and driving, but you’ve also given me the perspective to see the world from a different angle.

You’ve given me a richness of experiences that leads me to appreciate the fact that I can go to the bathroom without assistance, and that I have not been affected by the diminished learning capacities that are reality for many others who have my disability. I am blessed by your presence, not cursed.


I am on the left, calling play-by-play at a basketball game for the campus TV station at UW-Whitewater in 2006.

Because the able-bodied world puts labels on us, I have been considered everything from someone who is among life’s less fortunate to someone who is a great inspiration. The former label does not merit a serious answer and the latter is considerably above my pay grade. This is how I really think of myself: I’m someone who is simply doing what adults his age do by trying to make a living and enjoy the people in his life. If people are inspired by my responses to the challenges you pose, more power to them. But I would submit that most placed in my shoes would do the same.

We are going to be lifelong companions, you and I. The challenges will increase as we grow old together, and it would be nice if a female companion would eventually join us. But by the grace of God, I will be ready for whatever you throw at me.

Love,

Matthew

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The Change I Made That Helped My Daughter Love School Time

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Today I woke up early, made myself a cup of coffee, and went outside to overlook my backyard that I had worked hard on a couple of years ago. It took me a few weeks of digging, planting, and laying landscape fabric to create the garden I had always wanted. As I sipped my coffee, I admired the way it had all come out so beautifully. Everything was starting to bud and bloom, and I could envision how lovely it would look in just a couple of weeks.

My mind wanders back to winter, and how hard of a season it was for my child with autism and me. Winters are harsh in the Texas Panhandle and they were no less harsh inside our home. My only daughter suffers from autism, anxiety, SPD, and panic disorder. Last spring, she was enrolled in a PPCD program in our local school. We only attended for six months. Each day, I would take a screaming, flailing child to school. I tried to make our routine so perfect, even though each day when we got to school, she would start a tantrum. To say she hated it was putting it mildly.

She would pee on herself and throw up when entering the school. She did not bond with one teacher or any of the special needs children in her class. She would leave me crying, and I would pick her up crying. It was exhausting, and after six months of this, we quit. I could not put her through this anymore, and I could not handle one more day of seeing my child miserable.

So we took the winter off. I was a stay-at-home mom and I was keeping my already-behind child out of school. I got the disapproving glances from therapist, teachers and ARD specialists. I did not really care; I have never really cared what others thought about my decisions. I knew in my gut public school was not working. We kept up with therapies, but my child slowly stopped attending even those. She would throw tantrums every time we showed up at her center. So we took time off from that, too. We spent six months together, with me as her full-time caretaker and her taking a break from it all.

During this time, I was exhausted. My house would be literally trashed by the end of the day and I would spend every evening cleaning, mopping and righting all the destruction of the day away. The days were spent playing, running errands and doing several messy projects at home. It was tiring, but my child was happy.

I started to investigate private school. I found a school and toured it with my husband and my child. It was a small, private school for kids with autism, and it was attached to a thriving therapy center.

My husband and I both liked the look of the school and the fact she could receive her therapy during the day while she was already attending school. She would be on an individualized learning plan and could progress as fast or as slow as she was able. My only hang-up about the school was the cost. Public school is free and the tuition of private school rivaled my high SUV payment.

My husband was the only one working and as we sat to try and figure out the tuition, we could not come up with a solid way to make those payments work. We just did not have enough money. Eventually, I found a part-time position as a bookkeeper. I started my new job on the same day Gabby started her first day at the new school.

Walking through the front door, the director of the school told me she would stay at Gabby’s side until she was ready to join the school full-time on her own. Knowing someone would be at my child’s side like a mother, to keep her safe and happy while she got comfortable, gave me instant peace. It only took two days for my child to feel at home at the new school. The second day, she was waiting by the door, ready to go to school. Dare I say, she was excited. My child who spent six months throwing up at public school was waiting by the door, excited to go to her new school.

Three months later, my child is still waiting by the door. What I realized is that we needed that winter to figure out a new way forward. We needed time, time to take a break from the therapies and classes and to let her just be a kid.

It gave me time to investigate other options for schooling and therapy. My child is now receiving individualized education in an environment catered to her, and for only her. She has blossomed into a child with friends who are just like her and she is having a wonderful time at school.

Every day she comes home and she explains to me a new word she learned or a yoga pose she learned during her PE session. She is happy; finally, she is happy. It took all winter, but with time, we found a place for her. I am happier working a few hours out of the house and she is happier all around.

So as I sit looking at my garden that was not much to look at this winter, I realize that sometimes we as people need to take some down time, just like the seasons do. I will never regret that harsh winter. It makes spring that much more beautiful.

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