I’ve just watched a video three times in a row, crying continuously. It’s the one of a daddy-daughter dance that’s gone viral. I mean, anytime I see fathers dancing with their girls I get a bit choked up, but this dance is unique. McKenzie Carey, 12, has mitochondrial disease, which depletes her body of energy and keeps her in a wheelchair. Most children diagnosed do not make it past their teens years. The disorder has not stopped McKenzie from entering pageants—more than 100, as Today.com reports. And she’s been doing them with her father, Mike, a truck driver. They’re trying to raise money for her treatments.
Here’s the pair dancing in a pageant earlier this month to the song The Climb; McKenzie will be competing in three more this summer. The one thing Mike Carey does not want: pity. “I always tell people not to be sorry for us,” he’s said. “McKenzie was put on this earth for a purpose. I believe she is an angel. I’m just her spokesperson, I’m just her arms and legs.”
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.
Being an autism mom can amazing as well as challenging. As a mom, the amazing is easy to handle. I cheer every single moment and milestone because I know how hard my kid works. But the challenging stuff? The stuff that keeps me up at night or the things that make me see red – there’s no hand book for that. And sometimes my initial instinct isn’t always the best reaction.
It happened in a fast food restaurant. My son, Norrin, and I were sitting at a table waiting for my husband, Joseph, to bring over our food. I handed Norrin his iPad while we waited. We were on vacation, completely out of our routine and it was an unbearably hot day. All Norrin wanted was to return to the hotel pool. And there was no WiFi connection and Norrin wanted to watch a video on YouTube. All the ingredients for a major meltdown.
I calmly explained to Norrin that we were for Dad to return with our food. We were going to eat and then go back to the hotel. Usually Norrin is fine. He doesn’t need visual cues so long as I tell him what comes next. But the last few days Norrin had been having a hard time. And in that crowded fast food restaurant, my 8 year old son started to cry and scream. I remained calm and tried to comfort him with words, smoothing his hair away from his face. But he didn’t stop. His face was bright red and his nose runny, tears streaming down his face.
That’s when I noticed a table of three men staring at Norrin; their eyes wide open and lips curled in a smirk.
“Is there a problem?” I demanded. And when they shook their heads no, I yelled “Then why are you staring.” I was all New York Latina attitude, neck rolling and hand waving. I glared at them until they looked away and went back to eating.
Joseph had returned with our food and managed to calm Norrin down. Unlike me, Joseph had ignored the men and focused on Norrin.
I’m not usually that bold to confront a table of men. But I had been feeling overwhelmed and my Mama Bear instinct just went into full gear. In retrospect, it was the completely wrong way to handle the situation. What if one of those men did have a problem? Was I truly prepared to take on three men? I cannot put myself or my family in that kind of situation. I may not be able to control how others react to Norrin, but I am in total control of how I react to them.
During a public meltdown, the only person that matters is my kid. I have to tune out everyone else, ignore the stares, the smirks, the finger pointing. While it may not have been my finest parenting moment, it was definitely a lesson learned.
Have you ever confronted a stranger for staring at your special needs child?
Imagine this: Your child wakes up. Because of his physical challenges, he can’t make his own breakfast, but that’s not a problem. Because HERB (Home Exploring Robot Butler) does it for him, setting a kettle of water to boil on the stove, pouring orange juice and then stirring up oatmeal.
HERB has been in development for more than five years at Carnegie Mellon’s Robotics Institute, part of the Quality of Life Technology Center (QofLT). HERB is an exciting advance in the growing field of technology to help people with disabilities with manipulation and mobility. For my son, who has cerebral palsy, reaching up to a kitchen cabinet to get a cup is a near impossible task, ditto for grasping a remote control and pressing buttons. So robots like HERB are his future. As an article for CyberTherapy & Rehabilitation Magazine notes, HERB will provide assistance with meal prep, unpacking and storing groceries, cleaning dishes, light housework and organizing clutter. Down the road, HERB may help with transferring a person with disability from a wheelchair to a seat or helping someone after a fall. This is all accomplished via a range of sensors and advanced computer algorithm programming. You can see HERB in action in this video, along with a different robot in development:
Another robot with a less charming name, PerMMA (Personal Mobility and Manipulation Appliance), has been in the works since 2006 at QofLT. It’s basically a smart powered wheelchair with two dexterous robotic arms. Here’s PerMMA on a shopping trip:
HERB continues to make progress; he’s now figured out how to discover more than 100 home objects including items like foods and plants. Recognizing items based on vision alone in homes, which are filled with countless objects, is a major accomplishment. Not surprisingly, HERB snagged the Most Innovative Technology award at last year’s Robot Film Festival.
These robots aren’t yet available for sale and if they were, they’d most likely cost a bazillion dollars. But it seems very possible that they will inhabit homes in the near future and, as is this case with any new technology, be available (even rentable!) at a reasonable cost. In my son’s 11 years, I’ve already seen his world open up because of technology, thanks to his Proloquo2Go iPad speech app. I’m so, so excited for the assistance the future will bring.
In the third grade, Alexander had an assignment to dress up as a famous inventor and give a presentation to his class. At that time, one of his favorite things was helicopters. So he chose Igor Sikorsky, father of the modern helicopter, as the inventor to dress up as for his report. Because his reading and writing skills were not up to level, I wanted to help him show his classmates and his teachers that he was indeed capable.
I made a phone call to the press relations contact at the Sikorsky company and asked if there was someone who could help me get some special materials for my son’s project. I told the press person about Alexander, his love of helicopters, a bit about his challenges, and what we were trying to do.
Less than a day later, I received an e-mail from Elena Sikorsky, wife of Sergei Sikorsky, Igor’s son (Igor died in 1972). She let me know that Sergei would send Alexander a package with helicopter-related stuff. Soon, we received a package with a selection of trinkets and keepsakes from Sergei’s attendance at an airshow in Europe as well as a copy of Sergei’s biography about his father. The book was autographed for Alexander and had a hand drawing of a helicopter in the inscription.
Alexander and his mother and I worked with him using large letters and pictures in a three-ring binder to remember some sentences for his presentation. We practiced getting dressed in the Igor Sikorsky suit and hat. And drawing on a mustache. All very challenging things due to sensory issues. But we practiced and had a lot of fun and he really liked it.
The day of the presentation was a very busy one in Alexander’s classroom. Lots of kids dressed up as Ben Franklin, Marie Curie, Albert Einstein, and other famous inventors. It was a very busy room, and Alexander and I left because of the commotion. I helped him prep in another room. Alexander was fairly anxiety filled. At home, he could do his presentation well. But it didn’t seem like it would go as well in the classroom with all of his classmates and a lot of parents watching.
I was able to convince him to leave the room, and together, we walked back into the classroom. His mom started to videotape us. And the teacher walked us up and introduced Alexander as “Igor Sikorsky.” I stood behind him to coach him on his lines, and, just before he was to start, he shrieked and then butted his head backward abruptly. Right into my nose. Crack!
In front of 25 kids, all the teachers, and a bunch of parents. On videotape. You could hear a pin drop. And Alexander saying quite emphatically “All Done!” I believe if you listened closely enough you may have heard me whimper in pain. I think my nose was fractured. It didn’t bleed, but it was pretty clear that I was hurt and it was definitely sore for a few days.
This was one of my earlier lessons in meeting a child where he needs to be met. He really didn’t want to do his project in front of the class. I usually pushed him maybe 10 percent past where he thought he could be. That is what a good dad does, right? A slight, but not obnoxious, nudge to help a child learn and move forward? Push him a little outside his zone in order to learn. It usually worked. Except in this case, I guess I read him wrong and apparently pushed him a bit beyond his usual comfort zone.
So, after proving to half of the third grade parents in our small town that I could take a hard head butt to the nose and gracefully exiting the room with Alexander, we decided to adapt Alexander’s project in an edited video. We taped it at home, I edited it, and he showed it to his class. We enjoyed dressing up again, making the video, and he enjoyed watching his classmates watch his video. We also sent the video to Sergei and Elena Sikorsky.
My son, within one degree of separation from the inventor of the modern helicopter. And me, with a sore nose and an evolving perspective on parenting.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.
I will never forget the day my son, Norrin, was diagnosed with autism. The days, weeks and months that followed I felt this overwhelming sense of loss and sadness. At the time of Norrin’s diagnosis he had no speech; he couldn’t point his finger and lacked imaginative play skills. That was six years ago. Norrin has had made significant progress. We’ve celebrated many milestones since then because we’ve seen how hard he’s worked to achieve the things that come so naturally to other children his age.
Autism has become part of our every day. It’s so common to us that I don’t even think about it. And since Norrin is my only child, I have no idea what it’s like to raise a “typical” kid. I focus on the things Norrin can do rather than the things that he can’t. And I tell myself that he will meet those milestones in his own time.
We were on vacation last week. We went to Walt Disney World – the Most Magical Place on Earth. It’s the place most kids dream about. I watched as other families waited on line, as kids excitedly pointed to rides wanting to get on. They wanted to watch the parade, posed for pictures and looked like they were having fun. And while other kids were having fun, Norrin – after the second ride – had a complete meltdown. He started crying uncontrollably and said he wanted to go back to the hotel over and over again. I tried to console him but nothing I said soothed, he was ready to leave.
In that moment, I was reminded of autism. And all those feelings of loss crept in.
As we were walking out of the park, I felt defeated and disappointed. It had been years since we had a vacation and I wanted Norrin to have fun. I wished that we were like every other family in the park, the ones you see in the commercial. I know I shouldn’t compare but sometimes it’s hard not to. “Why does something fun have to be so hard?” I wondered.
We returned to the hotel, changed into our bathing suits and went down to the pool. We spent the next few hours splashing, swimming and having fun. Norrin was having a blast swimming under water and practicing floating on his back. The pool was small enough that I could sit on a nearby lounge chair and watch. It was a luxury and I appreciated the moment. Hours earlier at the park, I held his hand tightly, too scared to let go.
I love my son and I have accepted autism. Six years ago, I couldn’t see beyond his diagnosis. I couldn’t have imagined the progress he’s made. We have good days and not so good days. Days when I can forget autism exists and moments when autism is overwhelming. And during those moments, I have to accept autism all over again.