How I Always Say Goodnight to My Son With a Life-Limiting Illness

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Anyone who knows me knows about my son Maxie and his lifelong battle with Canavan disease. I have the obvious challenges associated with raising a son with a life-limiting illness, but our life is happy. Max is thriving at 18 years of age.

The charitable organization I founded has grown into the largest financial supporter of research to help children born with Canavan disease. I don’t think it’s helpful or productive to share too much about the pain this disease often brings to my life. But with that said, I would like to share something that could potentially affect anyone. And that is a simple kiss goodnight and making sure our kids’ — all kids’ — last feeling upon falling asleep is knowing they are loved and cherished.

When raising a child with a life-limiting illness, we as parents know the risks of our kids getting very sick and passing away at any time. We feel that even though they are living with a fatal illness, we would get to say goodbye. Sadly, this is not always the case. I have known a few children living with Canavan disease who went to bed happy and healthy and for whatever reason never woke up.

blonde woman kissing her smiling son
Ilyce giving Max a kiss.

I know this seems like a peaceful way to go, and it may be. But that is an important lesson I have learned. Just because my child has a fatal disease and could die from a common illness does not mean I will be by his side holding his hand as he leaves this world. This is how I’ve always imagined his last moments would be. I thought I would have the luxury of being there to comfort him as he took his last breath. That’s until last year, when a healthy child with Canavan disease passed away during the night. Then it happened again, and again. It’s probably been happening well before I was aware a child with a disease like Canavan could go to sleep happy and healthy and never wake up.

I now see that wanting to be there may actually be selfish because it would mean Max might pass due to a bad illness or seizure. Yes, I’d be there trying to comfort him, and smell him, and hold him until the last second of his life. But with the warning might come some illness and suffering.

So I kiss Max goodnight every night like I’ll never see him again, and my other son Alex, too. Is this healthy? Who knows, but that’s why I feel agony when I kiss Maxie goodnight, and joy because if something did happen then this kiss would be my last memory of him. A happy smiling boy giving his mommy a kiss goodnight.

Let’s all try to go to sleep feeling loved and happy. If that happens to be our last memory of someone, there is no way to go back and change it.

Kiss your kids too much, hold them too tightly and for too long. They will go to sleep feeling your love all night. Tomorrow is never promised!

boy lying down and boy next to bed smiling
Max (left) and his brother Alex.

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 Submit a Story page for more about our submission guidelines.

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3 Tips for Dealing With Roommates When You Have Autism

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Chances are, at some point in your life you are going to live with a roommate. If you have autism, here some tips on making it the best experience possible.

If you have any ideas for videos you’d like to see, please send me an e-mail to [email protected].

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To the Little Girl With Apert Syndrome Who Feels Like She's All Alone

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Apert syndrome. Not many people know what it is, and no one would expect 7-year-olds to figure it out on the spot, either. No one seemed to understand how a child could be born to look so remarkably different than the rest — not even the one the disorder is affecting.

The closest definition a 7-year-old with Apert syndrome would be able to come up with is it’s something that causes the kids around her to shy away from her. It’s something that gives grief and loneliness and makes her feel as if she has to sit by herself at a lunch table because she feels too awkward and nervous to approach anyone because of how they react to her. It’s something that makes her constantly ask herself, “Why me?”

This is for the 7-year-old me. This is for the girl who spends all her recesses on the playground, walking around by herself because everyone else has drifted off into groups and wouldn’t invite you to play with them. Be patient. You’ll soon surround yourself with a bunch of friends, ones who will love you unconditionally no matter what, and they will be there for you through every obstacle you come across. They will never leave just because you look a bit different from them and had to have many trips to the hospital for surgeries.

I speak to the girl who was often scolded by her mother for not being on the same level of maturity as the rest of her peers (as mature as grade school children can be, at least). You’re going to grow and carry a specific type of wisdom not many people will be able to see with anyone else. It’s the wisdom to judge people on their character, whether they have a beautiful personality more than a beautiful appearance. It’s the wisdom to always hold out a hand to someone in need, no matter where they come from, how they look and how they live. Before you know it, you’ll be right there with your peers, proving your maturity.

vivi zhang

I speak to the girl who grew up living a life of struggles, doubt and judgment. Who didn’t think she would go far in life because no one properly welcomed how she looked compared to the others around her. Don’t give up. Because one day, you will find happiness. One day, you will find confidence just being yourself no matter what society thinks of your Apert syndrome. One day, you’ll find yourself surrounded with friends who will love you the way you are no matter how you look or what you do.

Don’t give up. 

One day you won’t be the lonely girl on the playground.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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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The Difference That 5 Seconds Can Make

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I only had a moment to run in for an emergency stop at the grocery store. I had so much stuff to try to fit in that day, like trying to find big boy pajamas that buttoned down the front. I had just found out my sweet little boy had to have brain surgery.

mom kissing her son on the forehead
Donna and her son.

During the first few days of learning he had Chiari malformation, an incurable condition, and needed surgery, I had such a hard time being in public. It was difficult seeing everyone go about their lives when it took everything I had to not fall apart with worry about what was to come. The hysterical emotions rocketing through me at that time made it exceedingly hard to fight the urge to scream, cry or both. So a trip to the grocery store was not an easy task that day.

My goal was to get in and get out, and I had almost succeeded when I turned the corner and passed her. She looked me up and down, judgement etched on her face, then scoffed and smirked as she passed. Maybe she was just having a bad day. Maybe she didn’t like the way I looked or what I was wearing. Who in the world knows? I made a beeline toward the register swallowing back tears, refusing to allow them freedom until I got to the car.

The whole incident only lasted five seconds, but in that brief moment, my fragile spirit was crushed. Although it’s been over a year since my son’s surgery, I still have not forgotten the look on her face that day in the grocery store. It woke me up and got me to thinking. We have hundreds of five-second interactions every day, and we really have absolutely no idea what others around us are going through. It made me realize how in just five seconds, we have the power to change things, to go a little further, or to do a little extra for others (even encourage a mom who is carrying a world of worry on her shoulders).

In just five seconds, I can smile and ask how you are doing, or give you a compliment. In five seconds, I can look you in the eye and acknowledge you instead of making you feel less or even invisible. In five seconds, I can give my children a few more kisses or a big bear hug rather than say I’m too busy. In five seconds, I can take my husband’s hand rather than push him away. In five seconds, I can give my loyal furry friend an extra scratch between his ears. In a matter of mere moments I can truly make a difference for those around me and in the lives of those I love so much.

In just five seconds, we have the power to encourage or discourage. What are you doing with yours?

Follow this journey on Families Unbroken.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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Barber Launches ‘Superhero’ Group to Help Give Kids With Autism Haircuts

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You might remember our story about hairdresser James Williams, who was photographed getting on the floor to help a boy with autism feel comfortable during a haircut in November. Williams, based in Wales, wrote on his Facebook page that he was merely trying to figure out how to cut his young client’s hair without upsetting him. The story went viral, and since then Williams has been approached by a number of parents of kids on the spectrum looking for help with haircuts.

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Image courtesy of James Williams

Williams told The Mighty he opens his shop every Sunday for children with autism, but he wanted to do more, so he teamed up with several other barbers in the U.K. to launch the Autism Barbers Assemble group. Their mission is simple. “We go by the ‘ABA TEAM’ as superhero barbers to help children on the autism spectrum get past the fear of a haircut,” Williams told The Mighty.

Autism Barbers Assemble
Image courtesy of James Williams

So how does Williams get the job done? He says it’s a simply a combination of being patient and getting to know his customers. Last week he posted a video with Seb, a boy with autism. “It’s his first visit to my barbershop and this is where I will hope to get a breakthrough and show how I work with children on the spectrum,” Williams wrote on his Jim The Trim Facebook page.

First session on live stream with Seb who is on the autistic spectrum, it’s his first visit to my barbershop and this is where I will hope to get a breakthrough and show how I work with children on the spectrum and to show how they respond and act 🙂 Davie Walker Chris Moon Anthony Copeland Rhys GreenJac Ludlow Pat BarryTyra Leanne Grundy Eric Begg Alan Beak Lynndy Rolfe Scott Michaels Gareth D Clark Srb Gary Cox Srb

Posted by James Williams on Sunday, February 28, 2016

 

Autism Barbers Assemble will host their first event in Paisley, Scotland, and they are eventually hoping to bring their team to the United States.

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Pennsylvania District Judges Take Course to Better Serve Autistic Defendants

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District Judge Tom Swan, of Allegheny County, Pennsylvania, is one of approximately 1,000 district judges in the state now required to take a course in helping defendants with special needs in their courtrooms. Swan has a 19-year-old son with autism, and he explained to the Pittsburgh Tribune‑Review why it’s so important to help professionals in law enforcement and the judiciary system understand the behavior and thought processing of all people.

“If you read [my son] his Miranda rights and asked him if he understood those rights, he would say yes,” Swan said. “But if you asked him what it means, what those rights mean, he couldn’t tell you.”

The Pennsylvania Judicial Code requires every magisterial district judge to complete a 32-hour continuing education program each year, and thanks to an amendment passed in July, the program now includes courses in “identification and availability of diversionary options” for individuals with mental illness, intellectual disabilities or autism, reported the Autism Society of Pittsburgh.

District judge Tom Swan and his autistic 19-year-old son, Kevin, inside the courtroom of his West Deer magistrate's office on Friday, Feb. 12, 2016.
District Judge Tom Swan and his son, Kevin, who has autism. (Photo courtesy of Eric Felack / TribLive.com)

The Autism Society of Pittsburgh teamed up with Duquesne University’s department of counseling, psychology and special education to provide training, which involves a lecture and video.

Dan Torisky, president of the Autism Society of Pittsburgh (and former president of the Autism Society of America), told The Mighty that to his knowledge, this program is the first of its kind in the United States. He explained that it began as a police officer training program, and then moved to cover the entire justice system in the state.

Tammy Hughes, professor and chairwoman of Duquesne University’s department of counseling, psychology and special education, explained to the Pittsburgh Tribune‑Review how such training may help a judge recognize that someone who might be perceived as “noncompliant” for plugging his ears or closing his eyes may actually be experiencing sensory overload.

When asked about their expansion, Torisky told The Mighty, “We are currently preparing courses for defense attorneys, public defenders, prosecutors, higher level judges, and, ultimately, an alternative sentencing judges’ desk book.”

This is the most meaningful work that we have done,” Heidi Buckley, vice president and director of community relations at the Autism Society of Pittsburgh told the Pittsburgh Tribune‑Review. “It’s so practical, and it could be life-changing.”

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