When I Think About Our First Year With Autism

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If I could go back to the day it all started I would tell myself this is not the end; it’s only the beginning.

On August 28, 2013, my son, Dylan, was diagnosed with autism spectrum disorder.

I remember sitting in an exam room at Boston Children’s Hospital. The green plastic chairs and brightly colored toys punctuated the colorless room. It was a day just like any other day. My son had previously been examined by a neurologist, an audiologist, a geneticist, a gastroenterologist, a dermatologist and early intervention specialists. Now we were sitting in the Office of Developmental Medicine, and I was expecting to hear the same thing we’d heard every other time — that one disorder or another had been ruled out, but maybe you should see another specialist in another field.

IMG_2435 Only there was something different about this time. I could tell by the way the doctor was speaking to me, listing my son’s strengths, softening the blow that was coming next.

When she said the words “autism spectrum disorder,” I fought with everything I had to hold back the tears trying to sneak their way out of the corners of my eyes. I remember being angry with myself for being unable to control my emotions. I remember being ashamed that my body was trying to mourn my child who was alive, playing with trucks on the floor. And I recall wandering through the parking garage, finding my car, sitting in the passenger seat and not speaking for the entire ride home.

Summer turned to fall and I found myself dealing with therapists, the public school system, educational advocates and more doctors. As my son’s sign language turned to speech, I learned that Itoo could vocalize new things; I was capable of advocating for him. When he became steadier on his feet, I too felt strong enough to conquer this curveball coming at us. And even though we were making progress, we both experienced setbacks and regression but continued to crawl forward.

Fall became winter and with it, the snow began to fall from the sky, and my husband and I began to float away from each other just like the flakes outside my window. Things continued to change, life continued to move forward; the world doesn’t stop because you have a child with autism.

Over a year has passed since that day at Children’s Hospital, and today I sit here writing, looking back not on where we’ve been but at how far we’ve come. And although I know our journey together will not be easy, I know it will change us for the better.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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 I Asked My Husband If Our Lives Would Be Different If He Hadn’t Been Injured

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My husband’s injury does not define him. But I let it define me for a long time.

I’m pretty sure it’s tied into the fact that I liked being a martyr… I did. Check out this post I wrote about it: Caregivers as Martyrs.

Yes, unfortunately it’s true. I held onto my badge as my husband’s caregiver for all the wrong reasons… I wanted people to notice me for all I was giving up. I was screaming, “Notice me! Notice me! I’m so sad! Feel sorry for me! Please!”

It was terrible.

But I needed to do it as part of my healing process. Saying it all out loud feels pretty terrible, but it’s the truth. I was selfish and bitter and angry and lonely and my heart was closed.

But a lot has changed since then and most of it within me. Last week I asked my husband, B, if he thought our life would be a lot different if he hadn’t broken his neck. He looked at me and laughed and said, “Of course,” like I was an f’ing idiot. But then he got quiet and said, “I don’t think it would be as great.”

Uhhh… what?

“For real?” I asked.

“For real,” he said.

“Look at me,” he said. “I’m different. So are you. And in a good way. We wouldn’t appreciate things or have the patience or openness that we have if I hadn’t been injured.”

Now, for those that knew my husband before his injury, you would know how shocking that statement is. B could once be considered arrogant — to the point that he wasn’t very likable. I actually thought he was a big jerk when we first met, and I did not like him. He also wasn’t very loving and open or patient with those close to him. And hugging? Out. Of. The. Question. His family didn’t hug. Nope. Not at all.

That’s not a bad thing. It’s not. That’s just how his family was and how he was raised. Unfortunately for him, I was raised the opposite. I hug complete strangers. Someone needs a hug? I’m in. And B quickly learned he was going to have to like hugging. The first time he met my mom, she hugged him for a while. I thought he was going to throw up.

Then he got injured. And he had to immediately get used to everyone touching him. Helping him. Helping him eat. Dress. Pee. Helping him with everything.

Everyone was in his personal space all the time. He had to change. And so he did — and well. I can say, without a doubt, that my husband is one of the most patient men I’ve ever met. (I’m still working on it…)

He’s loving and caring and open and appreciative of the life we lead. I’ve learned a lot from him. But the greatest lesson he’s taught me is that his injury doesn’t define him. He won’t let it.

He’s injured. He’s paralyzed. But he lives his life like his disability is a normal part of him and not one to focus on. It’s a part of him the same way his eyes are blue. It just happened to be a trait he obtained when he was 30…

He lives his life with a grace and humility I never thought I’d see in him. When he was first injured, I threw myself into spinal cord injury (SCI) research and support groups and fundraising. It was what I needed to do.

He never wanted to be involved. He’d listen when I’d talk about them, but he never was interested. He supported my involvement but didn’t want to join a support group or learn more about SCIs. He left that to me. He instead just figured out by himself how to work and live — he does both now incredibly well.

I think this is part of why he’s so healthy. Why he’s going to outlive me. Because he’s figured out this whole “life” thing. Living isn’t about focusing on the future or the past, which I do often. Living is about staying in the present. Getting up every day and figuring out that day. That moment. Then going to bed and doing it all the next day.

So I’ve slowed down in my hunt for a cure. I haven’t stopped, nor will I ever. But I’m realistic about it now. I no longer hunt online for ridiculous cures and no longer spray his scar with healing herbs (Yes, I did do this once. Yes, I’m a scientist. Yes, I have a degree in biology. Yes, I was desperate.).

Instead, I will now take time to enjoy what we have… our daughter. Our love. Our work. Our friends. Our families. My black lab, Murphy.

I will also remind myself that because of my husband’s injury, I have changed. In a good way. My heart is open. My heart is full. I have helped people and continue to help people. All of these things I wouldn’t have without his injury. I will not let his injury define me but instead let it be a part of our lives. One that we will treasure because of what it has brought us.

Now, please don’t pretend to vomit from that statement since it was really, really hard to write and did feel a bit fake. I mean… treasure it? For real?  Well, yes! It is!

Look at all it’s brought us. It has given us a beautiful house. A van that uses hydraulics. A wheelchair that can carry groceries. Better parking spots. Bigger bathrooms.

It’s also brought us closer as a family. It’s opened our eyes and hearts to others’ needs. It’s brought our families closer together. It’s brought us patience and humility. It’s helped introduce us to friends who have brought so much to our lives.

It’s brought us much pain but so much more joy that I can no longer ignore. Because of his injury, B decided to pursue a Master’s in Health Policy and has a job now that he loves. It’s also brought me closer to my passion — helping people. It’s made me realize that healing isn’t just about medicine and the body but must include the mind and soul and lots and lots of love.

His injury has caused many tears but so much more love. I am a better person for it.

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This post originally appeared on We Rock, They Roll.

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How I’ve Found Meaning in All the Madness in My Life

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I’m a believer that everything happens for a reason. I’ve had this deep-rooted belief as long as I can remember. It’s been tested time and time again throughout my life, and perhaps most people won’t understand why I would still believe it at all. Maybe it helps me cope with the numerous traumatic events I’ve endured. Maybe it’s just the way I was brought up and a reflection of my parents’ beliefs or the little bit of optimism I have in me. Most likely it’s a little of all the above.

This belief has gotten me through the tragic death of my brother, the Cystic Fibrosis diagnosis of my youngest son, and my oldest son’s Tourette syndrome diagnosis. I’m also hoping this belief will help me get through the recent loss of our 15-month-old daughter to childhood cancer.

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I remind myself that without my brother dying, I most likely would never have met my soul mate. Without the diseases and disorders my children have had, there would be so many great people I would never have met. Without my daughter’s cancer, I wouldn’t know how kind, giving and loving strangers from all over the world can be.

I’m sure there are positives that came out of these things for other people. Maybe these events have made some people stronger, more thankful or given them reason to form closer relationships with their loved ones. As hard as it is to sometimes look at these things in an optimistic way, sometimes it’s the only way — the only way to not start a downward spiral of self-pity and depression.

Please don’t get me wrong. I wish like hell these things had never happened. I want my brother and daughter back immensely. I want my boys to live normal lives. But I know these wishes cannot be granted, so I guess I have to do the next best thing and keep moving. Keep pushing. And part of that has to come from the little bit of optimism that is left in me and the belief that there really is reason to all this madness.

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This post originally appeared on A Splendidly Imperfect Existence

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Son’s Beautiful Song Soothes His Mother With Alzheimer’s Disease

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Joe Fraley’s mother has Alzheimer’s disease. In the video below, as she grapples with the confusion and frustration that comes with this form of dementia, her son calmly reassures her through his words and his music.

Who are we now? I don’t understand,” she says in the video below. “I’m getting very confused.”

“It’s OK, everything is going to be OK, all right?” he replies, while strumming the guitar. “I promise.”

Fraley recorded the video before his mother was moved into an assisted living facility, according to the Youtube description. The video now has more than a million shares.

Thank you everyone so much for such kind words,” the Youtube description says. “I hope this video promotes awareness of this horrible disease… and encourages people to give their parents a big hug.”

Watch the moving interaction in the video below: 

To hear more of Joe Fraley’s music, go here.

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I Hope All Therapists Give This to the Patients They Work With

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Dear Doctor,

I don’t know where to start…

We’ve come a long way. As you remember, when I was 4, I was diagnosed with autism.

Looking back at it now 22 years later, I can attribute my progress to my work with some of the best speech therapists, the best occupational therapists and the best physical therapists. I was lucky. I thought we had it all…

But than we started working with you.

I remember the first time my mom told me the story of how you two met each other when she had ankle issues that required surgery. She didn’t have time for surgery so you willed the ankles back into place with intensive physical therapy. I get it now. When she was faced with my diagnosis, she wouldn’t accept anything but a good outcome for me, so you made it your mission to help me with intensive physical and occupational therapy.

photo 1 (3) When I first started coming to your office I knew I was a bit challenging, but I could tell how much you cared for your patients. We started working on exercises that would help me with my motor skills and my overall conditioning. When I got to high school, you played a huge part in helping me have the motivation to lose 60 pounds so I could play basketball and make some of the first friends I ever had. Along the way you were there to help with every little injury that came along — not only for me but for my mom and dad. How many mornings did you find me on your doorstep before school needing an ankle or wrist wrapped?

We spent so much time together, and during that time, you had the most positive attitude. When I was going through emotional issues as a kid and started losing motivation towards doing my exercises, we started new ones to try to gauge my interest. You never gave up on me. You reminded me so much of my parents in that you recreated the wheel to help see me progress.

Than something we weren’t expecting happened. You became a part of our family. You weren’t just my physical therapist — you were my friend. You helped me in school and you’d always be there at Christmas time with a gift. I still love visiting your office and catching up with you on anything from politics to college basketball.

The therapy stopped when I went to college, but we stayed close and you remained a huge part of my support system. You helped me land my first-ever internship at CBS Sports. Later, we’d ask you for help with countless scholarships and graduate school, and you were always the first one there willing to help. You helped me grow into a Master’s graduate who now speaks professionally, has a full-time job and has lived independently. 

I can’t thank you enough. Everything I’ve overcame in my life —  academically, physically, socially, you name it — you were there. I can only hope any families out that have a child with special needs have someone as amazing as you to help them succeed. I wouldn’t be here without you.

The spectrum of autism and special needs is so large, and the one thing I hope any therapist can give their patients is something you’ve shown me time and time again.

Your heart.

This one’s for you,

Kerry

This post originally appeared on KerryMagro.com.

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This Blind and Deaf Drummer Refuses to Accept Limitations

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Vaughn Brown is deaf and blind. He’s also a percussionist and music educator.

Brown, 27, lost his hearing when he was less than a year old to a life-threatening illness, according to The Columbian. Then, at age 4, he began losing his eyesight due to a genetic condition. Despite all the physical challenges he’s faced, he continues to pursue his passion for music. In May he graduated from the prestigious Berklee College of Music in Boston and is currently teaching private music lessons in Vancouver, Washington.

Disability is something every single individual on this planet has,” Brown says in the video below. “When it comes to physical as well as mental limitations, it’s something that society has taught — that you are limited. I would first ask yourself, ‘is this physical challenge really holding me back? Or is it the attitude that this physical challenge is holding me back?’ Which one is it?”

See more of Vaughn Brown’s inspiring story in the video below:

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