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To My Husband, the Father of Our Child With Barth Syndrome

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Almost eight years ago, I had no idea what we were about to get into with our son Christopher’s journey with Barth syndrome.

Both my husband and I had our own dreams and anticipations for our son we were about to receive in our arms. When Christopher arrived, those dreams were shattered, and the usual first moments spent bonding together were through an incubator and lots of tubes and lines. From the beginning, we were told to brace ourselves to imagine the unimaginable. We’ve made the hardest decisions anyone could ever face and even planned our newborn son’s funeral. We chose to let go if that were God’s will. We grieved over the dreams we had for our child. We watched helplessly as our oldest child, Justin, lost all security in his previously sheltered life.

Well, I believe our mighty God had other plans for our little family. I believe He wanted to show the world the miracles He still performs on a daily basis. Slowly but surely, our miracle Christopher made milestone after milestone. Justin slowly regained his confidence and security, and this experience has turned him into one of the most compassionate young men I know.

Our dreams and prayers were answered: Christopher has been with us far longer than we dared to imagine. He has accomplished some incredibly special milestones. (Being uncertain we would see them made those moments so much sweeter for us.) Even though we deal with some extreme circumstances at times, we somehow found a new “normal.” I found comfort and a new purpose from spreading awareness and our miracle story. Though being in the spotlight can be uncomfortable for me, “being in the public eye” and meeting many strangers has become necessary to fulfill my new dreams and missions in life. Just like when we lost our baby just before Christopher, my way to heal and continue living in the world is to talk about it. Finding others who truly “get it” and sharing our experiences. Giving one another support.

In this way I think a lot of men and women are different from one another. Or at least that’s true for my husband and me.

My husband has been beside me every step of the way through this journey. He has faced his biggest fears. He has made heart-wrenching decisions that I hope you are never in the position to have to make. We have been a team throughout this journey. We do cope differently. I know he and others get tired of hearing about it. My husband is more private and does not find solace from being in the spotlight, though he is willing to tell anyone who asks that God deserves all glory.

Sometimes seeing what others go through is just too much for him. It makes him relive our own experiences over and over, struggling with peace over the trials and fears we still face on a daily basis. He has had to be so strong. He has already lost and still faces losing his children. I think because he is more quiet about this, sometimes he doesn’t get the support he needs. He just isn’t going to talk about it, with me or anyone else. I think it is hard for a man even more than a woman sometimes because they feel like it is their job to fix problems with their families. And with the problems we face(d), they are obviously beyond his ability to fix. He struggles every day coping with everything. He use the same outlet that I do by networking.

I guess the point to all of this is, I want to recognize my silent pillar, my rock through the hardest times, my husband. Thank you isn’t a good enough word, Chris, for sticking in there, even when it gets hard. Thank you for being supportive of my ways of coping with our journey. I pray I am the best wife and partner I can be and all you deserve. I want to support you through every hurt, fear and dream. I love you with all of my heart.

Thank you for choosing (and keeping) me as your life partner,

Kristiana

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The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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 Submit a Story page for more about our submission guidelines.

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Family of Teen With Autism Fighting Criminal Charges After Public Meltdown

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In July 2015, 18-year-old Paul Gordo, who has autism, had a meltdown at a public library in Monterey, California, which resulted in him pushing a 58-year-old woman to the ground. Gordo is currently awaiting trial on a felony assault charge, and his parents, Steve and Susan Gordo, are fighting to have the case dropped.

The family hoped Superior Court Judge Pamela Butler would reduce the charges at the preliminary hearing last month, but that didn’t happen. The felony remained in place, and a misdemeanor was added for another individual who was pushed inside the library.

The Gordos told the Modesto Bee that this criminalizes the disorder, and Steve Gordo added, “You can’t prosecute someone for behavior that is a direct result of their disability.”

The family has set up an online petition that has already received more than 11,000 signatures of support, and Jill Escher, president of the Autism Society of the San Francisco Bay Area, even wrote a letter to Judge Butler urging her to drop the criminal prosecution.

Escher, who has two children on the spectrum, told The Mighty that major changes need to be made within our legal system. “One thing’s for sure, our criminal justice system, which is predicated on the idea of punishing those who willingly choose to transgress the law, is no place to address impulsive acts of developmentally disabled adults,” Escher wrote in an email.

Assistant District Attorney Jenine Pacioni disagreed. “We’re not prosecuting autism, we’re not blaming autism for his behavior,” she told the Monterrey Herald. “This is a crime of violence committed against an innocent woman. We need to protect the public by making sure criminal behavior is prosecuted.”

Pacioni added that the prosecution does not want to put Gordo in prison; rather, they would like to see him put on supervised probation, where he would be monitored and given access to services for which he might not otherwise qualify.

Gordo said the family does not want to accept felony probation, and in a message on the family’s online petition page, he wrote, “To charge him, at all, is to make his disability, itself, a criminal act.”

 

For more information, visit the Gordo family’s Facebook page and their Change.org petition page.

h/t Disability Scoop

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Madeline Stuart Rocks 6 High-Fashion Disney Princess Looks in Viral Video

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Madeline Stuart has done it again.

The world-famous model with Down syndrome is in the habit of stunning us all. This time she’s the star of a BuzzFeed video where she rocks six different Disney-inspired looks, complete with hair, make up and outfit.

Stuart looks gorgeous in everything from Rapunzel’s braid to Mulan-style bangs.

Check out Stuart’s Disney-inspired looks in the video below: 

Stuart can now add being a BuzzFeed video star to her long list of accomplishments that includes contracts with brands Manifesta and Living Dead Clothing, being the face behind the GlossiGirl Cosmetics “Beauty Is…” campaign, owning the catwalk during New York Fashion Week, having a one-of-a-kind doll made after her and launching a handbag line.

She doesn’t worry about what other people think. She just believes in herself,” Stuart’s mother, Rosanne Stuart, told The Mighty in August. “She has no hesitation, no hang ups and she doesn’t judge anybody.”

The release of the video comes on the heels of Stuart’s announcement last week that she’ll once again be returning to the runway for New York Fashion Week on Feb. 15. We can’t wait to see all that she has in store for us.

To keep up with Stuart on her many adventures, follow her on Facebook, Twitter or Instagram.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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When I Decided My IBS Diagnosis Would Change My Life for the Better

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April 12, 2009. I am lying in a hospital bed, coming out of an endoscopy. The anesthesia hasn’t quite worn off yet — I sit up and feel its dizzying effects for a minute before I lie back down. I can’t quite remember, at the moment, where I am or how I got there. Then, I hear a doctor’s voice. “It’s irritable bowel syndrome (IBS),” she says, before walking out of the room and out of my life forever. It occurs to me that I should feel relieved, and I am wondering why I don’t before I fall back asleep again.

I was 14 years old and a freshman in high school in 2009. On that day, April 12, I remember entering the hospital in the hopes of receiving a diagnosis for the stomach pain I’d dealt with for three years already. Although I did receive a diagnosis on that day, a diagnosis was all I received.

IBS. Three little initials. It’s amazing how many symptoms, anguish, pain and suffering lies within those three letters. IBS stands for irritable bowel syndrome, a long name for a collection of chronic stomach pains, intestinal problems and fatigue that affects up to an estimated 9 to 23 percent of the population. The cause of IBS is unknown, although some people place the blame on a dysfunction between the gut, nervous system and brain and their connections. More simply, the brain is supposed to “tell” the stomach when to move or do other things in order to digest food and perform normally. My brain and stomach don’t seem to enjoy “talking” to each other — either that, or they just don’t speak the same language. “Get a multi-language dictionary!” I felt like saying. “Figure it out!”

After receiving the IBS diagnosis from the doctor (who I never saw again, because she did not think the IBS diagnosis was “serious” enough to justify her time or effort), I began voraciously researching my condition, cursing the doctor all along for not offering me any information on managing this illness along with my diagnosis. Furthermore, as I continued researching, some of the tales I read from people with IBS horrified me, as did their overall tones of disheartenment. I remember that almost every personal account of IBS I read included the word “suffering” — one account went so far as to say that “IBS doesn’t kill you, it just makes you want to kill yourself.” Reading this, I felt all my hope draining out of me. I was sick, it seemed, and I would stay sick.

Thus began a period of several years of struggling with the hopelessness that a diagnosis of a chronic illness can bring. I knew that IBS would change my life, but it took me several years to decide that it was going to change my life for the better. My chronic illness motivated me to cut certain people out of my life who couldn’t understand my pain and open my heart to new people who could and did. It allowed me to create poems and songs, pushed me to find a sense of humor, and has helped me live a healthier lifestyle, free from the processed foods that taste oh-so-good but make my body feel oh-so-bad. More than anything, living with the chronic pain of IBS and my other disabilities has shown me the importance of living with a positive attitude, and just how much of an impact this attitude can have in making everyday life as a person with disabilities easier.

I learned to drive in my junior year of high school from a former race car driver with a strong Brooklyn accent named John. I remember sitting behind the wheel for the first time, placing my sweaty hands on the steering wheel and turning around to look out my back window.

“Whaddaya doin’?” declared John. “Why are you turned around? Your car is in drive!”

And thus I learned the first lesson of driving: You can’t drive forward while you’re looking backward. As a person with disabilities, I have found that this lesson continues to ring true. You cannot possibly move forward with your eyes stuck in the rearview mirror, lamenting labels, diagnoses or things you used to be able to do that you cannot do anymore. I have learned to keep my car in drive and my eyes pointed forward. While it is likely that I will always struggle with certain disabilities, they do not have to consume my life.

They will not consume my life. My life will consist of sunny days and goldendoodles, huge hugs and steel guitar strings and beaches, photographs and smiles and most certainly pain but certainly not suffering, because while I may not be able to control if I am in pain, I can always control whether or not I am suffering.

I will not live a life of suffering. I will not look backward.

Rather, I look forward to life; even more importantly, I look forward to living — with IBS, or without it.

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Ariana on a kayaking trip

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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 Submit a Story page for more about our submission guidelines.

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Dad Starts Autism Photo Project to Enlighten His Community

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A father is using his camera to tell stories of people on the autism spectrum.

Glenn Gameson-Burrows lives in Monmouthshire, Wales, with his two children. His youngest daughter, 2-year-old Aneira, has autism.

close up of a child's face.

In June of 2015, Gameson-Burrows, who is an amateur photographer, decided to turn his lens toward a subject of great interest to him — autism in his community. He embarked upon a photo project called “Magpie.”

The name “Magpie” is an allusion to his daughter’s fascination with shiny objects, and it has taken the form of a documentary-style photography project. Gameson-Burrows has 11 children and two adults on the spectrum taking part in the project so far.

Photo of a young boy in a chair.

Gameson-Burrows was surprised to find such a lack of understanding in his own community about autism — people were often rude and unkind when Aneira had meltdowns in public. He hopes the project will raise awareness about autism and help people everywhere to understand the condition a little more.

“I hope that people will realize that because a child is on the spectrum and looks at the world differently doesn’t make them a bad child or you a bad parent,” Gameson-Burrows told The Mighty via Facebook message. “My hope is that people realize autism spectrum disorder is a real disorder and not simply a child or an adult being strange or naughty… The next time a member of the public witnesses a child screaming and lying on the floor I’d like them to think, ‘Maybe that child is autistic, maybe they are having a meltdown’ and I would hope that they wouldn’t stare or make passing comments.”

A young boy on a playground.

Gameson-Burrows tries to capture his subjects’ different perspectives on the world with his photos. He doesn’t pose them or direct them at all and he captures smiles and meltdowns alike, all in an attempt to show the experience as a whole.

See more photos from the project below:

A Young girl being comforted.

A young girl smiling.

A young boy playing on a tablet of some sort.

A photo of an adult man from behind on a beach.

A young girl in a sink.

A young boy by a fence.

A young boy playing with a musical instrument.

A young boy standing very close to a TV.

A girl on the floor.

A young man from behind standing near a window.

Close up of a young girl's face.

A young girl crying on stairs.

A young girl smiling on a swing.

A boy playing on the floor with toys.

A girl standing in a field.

“Magpie” will be on exhibition at The Senedd, Modern Welsh National Assembly building this year starting in August. Visit the Magpie — ASD Awareness Facebook page for more information.

h/t BabyCenter

 

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The One Thing I Wish All Parents of Kids With Extraordinary Needs Realized

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My son’s neurologist said something to me at a recent appointment that I will never forget. We were going over everything we do to try to help him make developmental progress and increase his strength. He has weekly physical, occupational and speech therapy appointments. He has multiple pieces of equipment at home, and almost every second of playtime is a learning experience. We have been working diligently to achieve any degree of progress.

Melissa's son lying on the floor on a yellow blanket
Melissa’s son lying on the floor on a yellow blanket

Our son has PMM2-CDG (congenital disorder of glycosylation, formerly known as CDG 1a), and nearly every body system is affected by this genetic condition. He is severely developmentally delayed with low muscle tone. He will be 3 years old in April and is still trying his hardest to sit unassisted. He is fed with a feeding tube 24 hours a day and sees multiple specialists to monitor his disorder. Just when I feel like we are understanding him and making progress, something else comes up.

After going through his long list of tasks and updates, his neurologist said, “He’s climbing Mount Everest.”

I’ve been thinking about this recently, and one thing I wish all parents with children with extraordinary needs realized is that we are all climbing a mountain. Every single one of us has our very own Mount Everest. You can’t compare or say your trip up the mountain is worse or better because it’s your trip only, no one else’s.

I have ended friendships because of the comparison game or the “one up” constant battle. Can’t we all lend a hand along the journey instead of comparing? Can’t we all encourage each other to take the next step up to the summit? There will be steep slopes and there will be gentle slopes, but what is gentle to one may not be gentle to another. What is steep to me may not be steep to you. You know why? It’s my Mount Everest.

No matter what you are struggling with, it’s yours and yours only. For some of us, the trip up the mountain may take longer, and some of us may never see the view from the top. But if you’re like me, I know I won’t give up until I get there.

I know there are days when it feels like the top is too far and too hard to reach. I know there are days where we stumble and take a few steps back. There are days where we are simply at a standstill. But we’ll keep climbing because the view at the top is going to be extraordinary. So to all parents, keep climbing, and try to remember that the view at the top will be much more enjoyable holding hands. We’re all climbing.

Follow this journey on Team Christopher S.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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