How My Son With Autism Overcame His Fears to Take This Picture

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My son Brock was diagnosed in 2014 with Autism-SPD-impulsivity control issues. He has severe anxiety which makes communicating with people he doesn’t know difficult. This past school year he overcame so many challenges that had left him exhausted and angry at the start of the summer.

He has had a dream of becoming a police officer for as long as I can remember and was able to meet a couple different officers from our local department this Summer.

The first time I saw him truly smile was when I made a stop at the local police station and one of the officers stopped and showed him around the station while I was taking care of a past parking ticket. He answered all of his questions with a patience that is hard to come by anymore, even ones as silly as, “Why do cops have refrigerators?”

The officer spent almost 20 minutes answering my son’s repetitive questions all with a smile. When we left that day my son told the officer he was his hero. It really reiterated his want to become an officer as an adult.

What he really wanted was to get his picture taken with an officer so he could hang it on his wall. About three weeks later, there was an officer responding to a call in my neighborhood and Brock waited patiently for about an hour until the officer was done.

He worked through his fears during that time and started approaching the officer. His nerves got the best of him a few times and he turned around, but then he finally got up the nerve and kept saying, “Oh my gosh, oh my gosh, I’m really doing this mom!”

And he did.

He was able to get a picture with Officer Morgel and his K9 Officer Riko as well. The officer was incredibly patient and truly listened to my son. This doesn’t happen often, as he tends to get brushed off by people sometimes. But this man made my child feel special and he has smiled more in the last few days then I’ve seen in a very long time.

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Brock, Officer Morgel and K9 Officer Riko from the Osceola Police Department.
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Brock, Officer Morgel and K9 Officer Riko from the Osceola Police Department.

Sometimes the smallest things can make a huge difference in our children’s lives. I’m incredibly grateful that these officers would take time out of their busy schedules (while on duty) to put a smile on the face of a boy who otherwise finds it difficult to do just that.

 

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Nurses Gave This Cancer Patient the Surprise ‘Wedding’ of Her Dreams

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One little girl with cancer just had the best day ever.

While 4-year-old Abby is getting treatment for Pre-B Cell Acute Lymphoblastic Leukemia at the Melodies Center for Childhood Cancers in Albany, New York, she’s made a few friends, according to the Amazing Abby Facebook page. One in particular is her favorite nurse, Matt Hickling.

When Abby’s mother mentioned Abby wanted to marry Hickling, he and fellow nurses immediately went into action.

All week Abby had been telling me that she was getting married this week. I asked her to who and of course she said Matt,” read a post written by Abby’s mom on the Amazing Abby Facebook page. “They have always had a great connection since the beginning of her diagnosis. I asked her when and she said at clinic. I explained we weren’t going until Thursday. So she waited. I texted Matt yesterday to give him a heads up on her cuteness and received a text saying, ‘We’re planning a wedding tomorrow…’ That was about all the information I got.”

And plan a wedding they did. On Thursday, July 16, Hickling and fellow nurses organized a ceremony complete with a rose petal aisle, ring-pop wedding rings and a toy car with a “just married” sign.

 

Abby walked down the aisle to meet Hickling, who was clad in a tuxedo shirt, and gave him a big hug. Later, they had cake and took wedding photos.

“I know the people at the Melodies Center and know their creativity and thoughtfulness but never expected all of this,” Wrote Abby’s mom in a Facebook post. “Abby’s response was, ‘This is the best day ever!’ We are both in awe from today’s visit and smiling ear to ear.”

See some of the photos from Abby’s big day below:

 

 

“This day will hopefully be one our patient and her family can always look back on and smile when days are tough,” Hickling said in a Facebook post. “I know I will.”

See a video of the ceremony below:

So today I got to help make a 4 year old leukemia patient's "wedding" to her favorite nurse Matt Hickling happen at the...

Posted by Lori Ciafardoni on Thursday, July 16, 2015

 

Check out the Amazing Abby Facebook page to see more photos and keep up with Abby’s journey. 

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These Students With Special Needs Are About to Become Published Authors

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A special education teacher and his class at Mainspring Academy in Jacksonville, Florida, are publishing a book together to show the world the value of being different.

Chris Ulmer has worked with the same eight children since he began teaching special education three years ago. His students, now ages 10 to 13, live with a variety of conditions including autism, apraxia of speech, reactive attachment disorder and agenesis of the corpus callosum, a birth defect that affects the brain. Ulmer has become close with his students over the years, and he wanted to find a way to show them off to everyone else. That’s when he came up with the idea for “Special Books by Special Kids,” a program that will allow his students to publish stories about themselves.

“They’re quirky, they’re intelligent, they’re humorous,” Ulmer, 26, told The Mighty. “I want the world to see that.”

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Ulmer and one of his students via the Special Books by Special Kids Facebook page

Special Books by Special Kids” will be a compilation of stories written by each of Ulmer’s students. Each chapter includes a biography about the child based on interviews with the child’s parents, followed by that child’s story. Ulmer is currently in the process of writing the biographies, which will also provide background about the child’s condition and his or her life story. The students, who wrote or dictated their chapters to Ulmer earlier this year, told whatever stories they wanted. Many of Ulmer’s students chose to write about their conditions, but some are writing fantasies.

“Even if the story [is fictional], it still provides insight into the child’s condition in a different way,” Ulmer told The Mighty.

Ulmer says the first installment of “Special Books by Special Kids” will be out by the end of 2015. Half the proceeds will go to the children and their families, and the other half will go toward turning this project into an ongoing series, according to CBS News.

Beyond that, Ulmer sees “Special Books by Special Kids” as an advocacy campaign.

“I want our community and our society to understand that we’ve labeled intelligence so narrowly,” he told The Mighty. “Our idea of intelligence wouldn’t include my students. Because of that, everyone misses out. These kids would contribute to and benefit from society so much.”

But more than anything else, Ulmer hopes this project shows his students how exceptional they are and encourages them to embrace what makes them different.

“They might be a little quirky, but that’s awesome,” Ulmer told The Mighty. “It’s the quirky people who change the world.”

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Photo courtesy of Chris Ulmer

Take a look at some of the illustrations for “Special Books by Special Kids,” and learn more about Ulmer and his class’s project in the video below.

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“Special Books by Special Kids” illustration courtesy of Chris Ulmer
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“Special Books by Special Kids” illustration courtesy of Chris Ulmer

For more information about “Special Books by Special Kids” including updates the book’s release date and purchasing information, visit the project’s website and Facebook page.

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A Love Letter to American Voters From a Canadian Autism Mom

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Dear Neighbors to the South,

First, an admission. We often walk around up here, north of the 49th parallel, with puffed-out chests when comparing our universal and publicly funded health care system to your system. We may even sneer a little, “Can you imagine having to live in the U.S. where a private health insurance company dictates decisions about your health? Your child’s health?” When I began my postdoctoral fellowship in 2012 in San Francisco, I certainly arrived at the airport full of this brand of arrogance.

This was before my child’s autism diagnosis. This was before I realized how having a child with a disability could change everything you thought you once knew.

Indeed, when we became increasingly concerned about our son’s development, my first instinct was to race back home to the supposedly safe haven of Canadian healthcare. My arrogance and ignorance would end up costing us all dearly. Because much to my surprise health insurance in Canada does not cover Applied Behavior Analysis (ABA) therapy for children with autism. Currently, Canadian governments do not see it as “medically necessary.”  Some provinces provide partial coverage, but it varies widely and waitlists can be as long as four years.

Now, I know you have serious challenges with HMOs and private health insurance  in no way do I wish to dispute or minimize this. However, from one neighbor to another, I want you to take a moment to congratulate yourselves for your hard-won success of Georgia becoming the 41st state that’s enacted insurance reform laws to mandate coverage for applied behavior analysis (ABA) therapy for children with autism spectrum disorders. By mandating coverage for ABA, state legislators have recognized and enshrined your children’s rights to what I believe is medically necessary therapy.

These state legislators, however, have largely come to this conclusion through sustained advocacy of parents like yourselves, and in particular through the efforts of Autism Votes. With 1 in 68 children in the U.S. now diagnosed (we suspect autism prevalence is similar in Canada, but we don’t currently have a system in place that collects this data, so we’re guessing), Autism Votes harnesses the power in numbers of voters in states (and federally) to lobby and advocate for insurance reform, new legislation and other state and federal initiatives benefitting families and individuals with autism.

You should be proud of this, of Autism Votes and of your state legislators who took seriously the very real threat of a large cohort of voters who presented them with a reform agenda. They listened this time. You have 8 states remaining; as of July 16, 2015, Hawaii became the 42nd state to pass autism insurance reform. But even when these states sign on — and I hope they will — the one thing I’ve learned in the short two years since my son’s diagnosis is that advocacy is chronic. None of us live in the kind of society yet that treats our children with the respect, support, and justice to which they are all entitled.

A group of parents in Canada took their complaint regarding the absence of insurance coverage for ABA to the Supreme Court of Canada in 2004, and the Court ruled that while ABA was a medically necessary therapy, the Court was not in a position to compel the Government to pay for it. So, Canadian parents are now left in a position to learn from and emulate your successful advocacy efforts; we must compel legislators to change the law (the Canada Health Act) to include ABA therapy for individuals with autism.

I am a proud Canadian, but this pride will never override my love and concern for my child. I wish we had stayed in California. I wish I didn’t have to fight this fight. I wish I could simply parent my child with the knowledge that his disability is well-supported with effective therapy interventions. Raising a child is difficult enough without having to assume another full-time job of chronic advocacy.

Dear neighbors to the South, you’ve shown me change is possible, and for that I thank you from the bottom of my heart. Thank you for renewing and sustaining my hopes for a better future for our children.

Love,
One Canadian Autism Mom

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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This Children’s Hospital Found a Great Way to Show Patients They’re Not Alone

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A children’s hospital in New Jersey found the best way to show its patients they aren’t alone.

The Children’s Specialized Hospital, a pediatric rehabilitation center, treats children with a variety of special needs, including brain injuries, physical disabilities and life-threatening illnesses. One thing these children all have in common? They work through the often demanding obstacles their conditions present them each day.

To remind its patients they’re not in this alone, the Children’s Specializes Hospital started a social media called #FightFace, where people upload photos of themselves making “fight faces” to show their solidarity. Their theme song? Pop star Rachel Platten’s breakout hit, “Fight Song,” which plays in the campaign’s music video above.

#FightFace has already gotten some great responses. Take a look at some of photos submitted so far:

The Children’s Specialized Hospital also released a music video featuring hospital patients and staff featuring the song “Fight Song” by Rachel Platten. Watch the touching video below.

To learn more about the Children’s Specialized Hospital’s #FightFace campaign, visit their website. To support and participate in their campaign, search the hashtag #FightFace on social media.

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Why I Cried With Joy When My Daughter With Cerebral Palsy Wore Flip-Flops

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During the hot, sun-filled summer, I’m so grateful for flip-flops. Yes, flip-flops. I’m grateful for the skill it takes to keep them on your feet, and the sound they make as you walk. I never used to be so fond of them — until two summers ago.

I’m sure many of you reading this have had the experience of wearing a pair of flip-flops. And I’m also sure it’s likely an uneventful, subconscious experience for you.

Well, for my daughter, who’s a person with hemiplegic cerebral palsy, it was a learned skill that took a few weeks. It was a huge accomplishment for her since she’s used to wearing tennis shoes with a brace on her left leg.

So, for weeks that summer, I allowed her to wear them in the house only, just so she would take her time and not fall. Even though she was insistent on trying them, I was hesitant because her therapist voiced how awful they are for her feet and suggested it was not a good idea. But because she wants to be just like her friends, she wanted to learn. So how could I deny her the right to be like everyone else?

Recently we had to run to the grocery store for just a couple of items, and she proceeded to the door in her flip flops — for once, I did not object. When she realized I was going to allow her to wear them out of the house, she was elated and thanked me the entire way to the store.

The simplest thing we take for granted all summer long brought her such joy.

We went to the store and she took her time, proudly looking down at her feet often. And, in the midst of the hustle and bustle of the people in the store, a quiet miracle of our own was occurring. I started to cry a soft, grateful, joy-filled cry, right there in the middle of the store. My heart was full as I watched her accomplish this big task.

What are your flip-flops?

What are the things that have happened in your son or daughter’s world that would definitely be a miracle to you and your family?

If you’re unsure, I hope you will be able to recognize when something remarkable has happened, no matter how insignificant it may look to the world — and want to celebrate and share it with others. Our kids’ successes will motivate other special parents to keep hoping and look toward their next “flip-flop” moment.

I know some special moms are patiently waiting for their child to put a simple sentence together, while some are praying for their child to sit up or walk. For them, a new word or a strengthened muscle can turn into a day full of celebration and hope.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/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. Check out our “Share Your Story” page for more about our submission guidelines.

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