How My Brother With Autism Made My Wedding Unforgettable

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I remember my wedding day vividly for a number of reasons. I married the most amazing man who loves me for all that I am. Our wedding was planned with love. We spent hours crafting a ceremony that was perfectly us. We found poems and stories to include that spoke of our relationship. It was impossible for me to read the final draft of our wedding ceremony without tears in my eyes.

sarah ely the mighty

Our bridal party included our dear friends and siblings. My brother, Jamie, was one of our groomsmen.  Jamie has been diagnosed with PDD/NOS and mental retardation. Sometimes Jamie was happy to be a part of our bridal party. Sometimes he told me that he was too nervous to be a part of it, but we talked him through it. We explained what would happen.

My husband, James, told him how much it would mean to both of us for him to be up there with us. James said he would have another brother. So Jamie agreed.

We’ve talked to so many people since our wedding day. They tell us how beautiful our wedding was, and how happy James and I were. But, without fail, the part that people remember the most is Jamie.

When the minister asked if the community around us affirmed our wedding, everybody was quiet, still listening. Into that silence, Jamie shouted YES. He didn’t hesitate. He shouted. YES. There was a pause, and then laughter. And clapping. Because Jamie’s declaration of YES was exactly what our wedding needed.

Jamie didn’t know that we would be asking for an affirmation, or even what that meant.  But he did know that that was the moment to say it, and if you’re going to say it, you may as well say it as loud as you can.  The ceremony stopped as everyone cheered for Jamie, who was grinning from ear to ear.  He didn’t stop smiling for the rest of the day.

I think back on this moment often. It was perfect. Jamie was perfect. We would have had a lovely day regardless of what happened; we were getting married! But the fact that Jamie took that day and really made his mark on it made it another thing all together.

Our wedding photographer managed to capture that moment after Jamie said yes. You can see our joy, and the joy of everyone around us. What better wedding gift could we have asked 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 to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Simple Question From My Student Left the Whole Room Speechless

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I assist in a pre-K class that has students with “differing abilities” and then five “typicals” (students who require no additional resources).

One of our students, MJ, has cerebral palsy. MJ has the thickest darkest curly hair. I get the biggest smile from him when I run my hands through those curls. His smile brings one to my face as well.

At the beginning of the year, typical students who have not had one-on-one daily contact with kids with differing abilities tend to kind of step back, stare and ask lots of questions. By the time the first 30 days of school have passed, it’s like the kids have known each other forever. Speech teachers, physical therapists, teachers for deaf and hard-of-hearing students, and occupational therapists visit our classroom daily. We hear a knock and the kids look up and see which “helping” teacher it is and go back to what they’re doing. It’s like asking a student to pass a crayon; in other words, nothing out of the ordinary.

MJ’s mom is expecting a baby. One day she was in class and all the kids were asking about the baby. Boy or girl? Boy. Name picked out? Christian. When is the baby due? March.

Then one of our typical students, Susie,  looked at MJ and asked, “Is the baby going to be like MJ?”

Silence filled the air. All the grown-ups looked around at each other. I took a deep breath and was going to remind the children about what cerebral palsy is… but then the student who asked the question, Susie, piped up in a very matter-of-fact way: “If he is going to have dark curly hair like MJ, he better get used to having Ms. Murray running her hands through his thick curly black hair. Ms. Murray loves those curls. She says the curls are his hair smiling.” Susie went back to playing with MJ.

I couldn’t help but smile and shake my head. My thought immediately went to MJ’s differing ability, but this sweet classmate didn’t even have that on her mind. It was the dark hair with curls!

P.S.: Christian Xavier was born March 25… and he has a head full of dark curly hair!

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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Here’s What You Can’t Take From My Son, Cerebral Palsy

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To Cerebral Palsy,

I had heard your name in passing but never blinked an eye. You were not important to me then, because you were not in my life and I didn’t expect you ever would be. But then you viciously barged into our lives 21 months ago and left an everlasting impression. I would rather not know you and I don’t like you one bit.

You turned our world upside down. Everything I thought I knew and planned for, everything I understood and trusted went out the door on the day my sons were born.

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My son has a name, and it does not include cerebral palsy as a prefix or suffix. But my son also has an identical twin, though they have been polar opposites since birth.

I have not reached the forgiveness stage just yet, or the time where I am ready to thank you, CP, for what you have taught me. I wonder what we are being taught by this hard, long lesson.

My boy had a catheter, a ventilator, a CPAP, multiple X-rays, multiple blood draws, a phenobarbital and antibiotic cocktail, an EKG, 2 EEGs with 24 electrodes glues to his tiny head, 2 blood transfusions, forced nutrition instead of breast milk, an MRI of his brain and constant monitoring of his heart, temperature and oxygen in his first week of life. He was in the NICU of a hospital with a different stranger every day for 25 days and his twin spent the first 25 days of his life visiting his brother in the hospital every day.

My boy cried 18 hours a day for the first 6 months of his life. He was diagnosed with colic, reflux and pain; we just tried to survive every day. It takes 1 to 4 hours a night to put him to bed because he can’t be left alone unless he is in a deep sleep. He has such spasticity that he arches so hard he bruises my arms, and carrying and caring for him causes physical pain many days.

He’s been to a dozen different specialists and continues to get three to five therapy sessions every week, from PT, OT, speech, swimming, Anat Baniel, chiropractic, craniosacral, cranial osteopathy, Musgatova and more. Because of you my boy still can’t ride in the car without screaming the entire ride. Because of you, it is easier to stay at home then to try to do anything that involving being out in public. My 21-month-old looks and acts like a 4-month-old, and is unable to hold his head up completely, roll over (unless accidentally), sit, stand, walk or talk.

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However, you have not taken Berkley’s spirit or spunk. He is by far the strongest person I have ever met. He is brave, resilient, courageous, smart, handsome, amazing and he has an awesome sense of humor.

You may have taken away the ability for his body to cooperate with his brain, but he works harder at everything then any person I know.

Ultimately, he just wants to be held, protected, loved and doted on. That has become my job for now and I wake up each day with hope that today will be better in all ways.

 

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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Watch This Touching Duet Between a Musician and His Uncle With Down Syndrome

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Travis Hatfield, an aspiring country musician from Gilbert, West Virginia, has become a viral sensation after he posted a sweet video on his Facebook page.

Hatfield shares a close bond with his 47-year-old uncle, Jamie Joe Cline, who has Down syndrome, WOWKTV News reported. The two love to play music together.

He is the inspiration,” Hatfield told the outlet. “His love for music is probably stronger than mine, honestly. Every day he is blasting his radio out.”

Cline and Hatfield spend time playing music together at least one day a week, and recently Hatfield decided to post one of their sessions on his Facebook page. In the video, the two sing “He Stopped Loving Her Today” by George Jones.

 

Cover of “He Stopped Loving Her Today,” Everybody please watch this. I have a very special person in my life singing with me, his name is Jamie Joe Cline. He is my 47-year-old uncle who happens to have Down Syndrome. Those who know him, love him. He is a big part in my life and I don’t know what I would do without him. He's one of the sweetest people I have ever met. Just wanted everyone to see what our weekends together consist of. Thank you!

Posted by Travis Hatfield on Monday, March 23, 2015

Hatfield posted the video on March 30. Since then it’s been viewed over 2 million times.

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I Can’t Predict the Future for My Son With Autism, but I Do Know This

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Nathan’s story began the evening of April 24th, 2009, his birthday shared with his twin brother, Matthew.  The day that my most important and much dreamed-about title was given to me: the title of Mom. It was not easy getting there, and at some points I never thought it would happen, but it did and I was doubly blessed.

Infancy and the newborn period were pretty uneventful. They both developed and grew as would be expected. It was not until Nathan was getting close to 18 months and not walking that I began to notice some delays. Then there came a point that I began to notice his speech was delayed and that he actually stopped saying words he previously said.

We had him evaluated and he began speech therapy at that point. Further behaviors, such as rocking, started to put autism in the back of my mind. But then I would think, he loves hugs, he is affectionate, he may not seek out other children but he is not totally anti-social. In addition I had many telling me not to worry about it, that one day he would grow out of it and start talking. That day did not come.

I went to my pediatrician who at first said the same. He went right over to her in the exam room and snuggled up to her, but what she didn’t realize at that time is that he didn’t do that for socialization; he did it because of the computer she had. He loves computers! As we talked, she did recommend an evaluation. Since it was an 18-month wait for the pediatric developmentalist, we were referred to a pediatric neurologist.  There is where we heard, “Yes, your son is on the spectrum.” Once we saw the developmentalist, he was officially diagnosed with moderate autism.

Sometimes I think, would I want Nathan without autism? Most days I say this is who he is, and I really would not change him. He is such a love; he sees no evil, nor does he have one mean bone in his body. At the same time, I know bad things are out there and he might not recognize them when they’re in front of him. This is what keeps me up at night. The bullies, the ones who don’t understand autism or special needs children. I worry about them. But he has an amazing support system, from his therapists and teachers down to the kids who love him at school, and I know they will protect him.

I struggle with his anxiety and at times it is more than he or I can take. There are some days both of us are in tears. Family outings are very difficult because we never know if he will be able to tolerate it. But we have been blessed. Many families have to take out second mortgages on their house, have to move, or otherwise go into incredible debt to get their children the therapies they need. We have not had to do that.  Nathan has gotten services since he was 2.

Autism is a journey, and I don’t know what the future holds for Nathan. What I do know is that he has a team and a family that will help him to grow and develop into the person he will become. What I do know is that he is very intelligent and he amazes his teachers and therapists every day. What I do know is that all of us want to unlock what is in his mind that’s left unsaid.

What I do know is that Nathan is a gentle spirit, and he can be a mischievous little boy who likes to aggravate his brother with a laugh.

We are a family. We welcome the ups and the downs as a family. We have our good days and we have our bad days as any family. Are there trying times? Yes there are, like the struggle of getting Nathan to poop on the potty and getting him out of pull-ups.

Are there joys? More than I can even list! They are bountiful, such as hearing Nathan trying to say a new word, letter or number. Seeing him play with other children at daycare. Seeing Matthew interact with other special needs children with love. Getting a great, big hug and kiss from Nathan.

In the end, we are a family living with autism. Would I wish for Nathan to be different and not have autism? Honestly, I don’t think I would.

He is a beautiful child. He is a beautiful spirit. He is such a gentle soul. This is Nathan and I accept him for who he is and who he will become. And I am so incredibly proud to have him as my son.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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 One Piece of Autism Advice ‘New Me’ Would Share With ‘Old Me’

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Dear the Old Me,

Yes, I’m aware that technically you’re 11 years younger than I am. An entire decade ago I was 34, which now sounds fabulously young, but the weight you carried and the worry that creased your brow 24/7 (thanks, by the way, for the giant brow wrinkle and frown lines the New Me currently sports) made you old before your time. The Old Me, if only you knew then what the New Me knows now, I could have saved you many sleepless nights and the New Me hundreds of dollars in Botox treatments.

You know, the Old Me, all your researching, all your web surfing, all your expert advice-seeking and all that label shopping only made your frown lines deeper in the end (again, I thank you). I wish you would have turned off your brain and just listened to your heart, like the New Me tries so hard to do today. You see, the Old Me, no matter what you read, no matter what you heard and no matter what “they” said, your heart always knew. Your heart always told you, “He will be OK.” But like many mothers who first hear the “A” word, fear took over the brain and completely stifled the message coming loud and clear from the heart.

On the days his screaming deafened you, unaware that even the slightest bump could feel like an electric shock rippling through your boy’s nervous system, I could have told you, “He will be OK.” During the horrendous years of potty training when it felt like all you did was hang out in the bathroom while you begged, bribed and threatened only to throw one more pair of Buzz Lightyear underpants in the garbage (money that could have easily gone toward filling that frown line), I could have told you, “He won’t go to school in a pull up.” When his overloaded sensory system reached its breaking point and caused inexplicable meltdowns from seemingly minor events like skipping an aisle in the grocery store or putting on new sandals, moments that not only made you feel like something was “wrong” but also ripped your heart out because you didn’t know how to help him, I could have told you, “One day he will find and use his words to help you understand.”

The New Me wishes I could have held your hand as you sat alone with tears streaming down your face in the daycare parking lot as you watched all the “normal” kids playing, running and talking while you silently prayed that today would be the day you wouldn’t find him alone under the slide. I wish I could have comforted you as you cried yourself to sleep wondering, “Will he go to school?” “Will he ever have a friend?” “Will he ever hug me back?”and, the one that kept you up night after night,”Will he ever know how deep my love for him goes?”

I’m so sorry, the Old Me. I wish I could have warned you how detrimental it is to socialize with Denial, Clueless and Guilt. They may have helped you cope sometimes, but in the end, all they were ever going to do was hurt you. I wish I could have pulled you away from their negative influence and introduced you to Acceptance, Awareness and Different. As the New Me knows, they’re much better friends to have around and would have gotten you through those harder days without quite so much wine and quite so many tissues.

I could have told you, the Old Me, but you wouldn’t have listened. You needed to see it, feel it and live it for yourself. Yes, maybe knowing then would have made life easier, but would it have made now any better? Would you have appreciated all the gains, progress and joy if you knew what was to come? Would you have pushed him, pulled him, fought him and made him uncomfortable in the end if you knew he would be OK? Would you have worked so hard to prove your love if you knew he was always aware of your love and that he loved you all along? Warning you about Denial, Clueless and Guilt would have gotten you nowhere because at the time, you needed them. They were the friends who made you recognize later how much better life is without them and how friends like Acceptance, Awareness, and Different allowed you to see the beautiful boy standing right before you.

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So yes, the Old Me, I could have saved us hundreds of dollars in Botox and wine if I would have just said, “Listen to your heart.”

But you had to hear your heart without me. You had to hear your heart when you were ready. You had to watch him struggle to see him shine. You had to feel the pain to experience the joy. You had to doubt before you could believe. You had to hang with Denial before befriending Acceptance. You had to see him and not see autism. And as painful as those years were then, you had to live them to get you where you are now.

You know what’s funny, the Old Me? Ten years from now, the New Me will be The Old Me because I will never stop growing, learning and loving this awesome boy. The one thing that won’t change in 10, 20 or even 30 years is that my heart now guides me instead of my fear-induced brain. Sure I still worry from time to time, but my heart is no longer silenced by fear. I hear my heart loud and clear when it tells me to stop eating a sleeve of Thin Mints in one sitting and when it whispers,”I don’t think doctors meant that much red wine is good for your heart (shut up, heart).” But the message I hear the loudest, that no fear can ever hush, is, “Never, stop believing in him. He is going to be OK.”

My biggest regret for you, the Old Me, is that I wish you would have heard that, too.

Love,

The New Me

P.S. Please start a savings account for that frown line. It’s gonna get deeper.

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A solo. Yeah, the Old Me would have never believed it. Ryan and the New Me have come a long way.

This post originally appeared on The AWEnesty of Autism.

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