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A Little Girl Gets A Second Chance At Childhood

Wednesday, July 16th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Kinsey Saleh was like any other feisty 5-year old girl who liked playing with her friends after school and eating ice cream. However, Kinsey’s mother, Nadine Morsi, said she knew “something was wrong” when Kinsey started experiencing shortness of breath, fatigue, decreased energy and unexplained bruising. When Kinsey complained of joint pain in her knees, Morsi insisted on a blood test. Both the doctor and Morsi were shocked when the test revealed Kinsey had developed a rare case of end-stage kidney failure. Kinsey’s condition was so critical, doctors feared the 5 year-old would suffer from a stroke or go into cardiac arrest.

Instead of playdates and ice cream, Kinsey’s childhood afternoons consisted of doctor’s appointments and dialysis. Kinsey needed a kidney transplant and was put on a waiting list. Kinsey’s mother, while a perfect match, was unable to donate due to congenital clotting disorder that made surgery risky. “I felt helpless,” Morsi said.

“I became a special needs mom overnight,” Morsi said. As a pediatric occupational therapist for the New York City Department of Education, Morsi was aware of the assistance her child could receive. Kinsey was able to attend school with the assistance of a full-time health paraprofessional.

Morsi admitted to wanting to keep Kinsey’s diagnosis a secret. But a close friend insisted Morsi share their desperate search for a kidney donor. Kinsey’s story was shared throughout Facebook and she quickly captured the attention of local media.

Morsi has used her experience to raise awareness and help others. Every day 13 people die waiting for a kidney. “We can all live on one kidney…please share your spare if you can,” Morsi urges.

Last month, nearly six months after her diagnosis, Kinsey received a kidney transplant. She is doing well and is gearing up for the 1st grade in September (without any special assistance). Kinsey can spend the remainder of the summer with outings to the park and the sweet promise of ice cream. Morsi is extremely grateful that her daughter has been given a second chance at a normal childhood. She recently shared: Every single day is truly a gift. Not a day goes by that Kinsey’s donor is not in our hearts for allowing her to be a kid again.

Keep up with Kinsey and her mom via Facebook - Kidney for Kinsey.

 

Catch up with my last post: How Not To Handle a Public Meltdown

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Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor

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A New Bike Built For Kids With Special Needs

Wednesday, June 25th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Jyrobike is the World’s First Auto Balance Bicycle that features a patented Control Hub in the front wheel that uses gyroscopic technology to keep riders upright, even when they tip or wobble.

Riding a bike has not come easily for my son, Norrin. After he was diagnosed with autism, we learned that he didn’t have the strength or the coordination to pedal. For years we’ve worked with therapists trying to build up Norrin’s muscle strength and teaching him how to balance. We’ve bought tricycles, big wheels and even scooters – hoping Norrin would be able to master one. Eventually Norrin learned to pedal but he still lacked the focus, tired easily and had difficulty maintaining balance.

Last spring, we bought Norrin his first real bike. And while he showed an interest in riding it, he still needed a lot of work. Even with the training wheels he still had trouble with balance and had difficulty turning. Now that bike is too small and we’re wondering whether or not we should buy another. Norrin will still need training wheels and it may be years before he learns to balance independently.

That’s when I heard about the kickstarter campaign for Jyrobike I knew I had to share it! It’s the ideal solution for kids like mine. “Jyrobike is built on the core principle that bikes become inherently stable at higher speeds because the faster the wheels spin, the more balanced it becomes.” While originally designed for 3 – 8 year olds, “one of [the company's] stretch goal rewards will be very popular with parents of older children.” There are also plans to launch an adult product.

Jyrobike will change the lives of so many families with special needs, especially kids with autism. It allows children to learn to ride a bicycle with confidence and a sense of security. It will provide the physical activity they need to maintain their health and it’s a social activity that can be shared with family and friends. Bike riding is a skill that can lead to a more independent life.

To learn more about Jyrobike visit http://www.jyrobike.com.

Catch up with last week’s post: How Not To Handle a Public Meltdown

And from my other blog:

 

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How Not To Handle a Public Meltdown

Wednesday, June 18th, 2014

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?

Catch up with last week’s post: Six Years Later, I Am Still Learning To Accept Autism

From my other blog:

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Six Years Later, I Am Still Learning To Accept Autism

Wednesday, June 11th, 2014

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.

Norrin is now 8 years old and has been autistic for most of his life. The constant feelings loss and sadness have long subsided. I don’t wish to cure Norrin’s autism and I don’t believe it’s the worst thing that could have happened.

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.

Catch up with last week’s post: Father and Son Bonding When Your Son Has Autism

Understanding Autism: Sensory Issues
Understanding Autism: Sensory Issues
Understanding Autism: Sensory Issues

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Father and Son Bonding When Your Son Has Autism

Wednesday, June 4th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

When Norrin was first diagnosed with autism, my husband, Joseph, had a difficult time. Like many fathers of sons, Joseph imagined little league, football games or teaching him how to drive. Neither of us imagined, therapists, disability or special education. Those first few weeks/months/years we wondered if Norrin would ever speak or grow up to be independent. And I know Joseph worried about what kind of relationship they would have. If they would ever have that father-son bond.

Norrin started baseball again this year. This time, he’s on a team and is required to play each week. Last week was Norrin’s second game and Joseph was Norrin’s “buddy.” Norrin hit his first single! Seeing the look of pride on Joseph’s face, reminded me of how their relationship has evolved over the years and how Joseph has learned to bond with Norrin.

4 Ways My Husband Bonds With Our Autistic Son

Comic Books & Cartoons. Joseph is a major comic book fan. So much so that we named Norrin after a comic book character! While I spend my bedtimes reading Norrin my childhood favorites, Joseph reads books featuring his favorite comic book heroes. Joseph gets into character by changing his voice and Norrin loves listening! They also spend time watching cartoons like Super Hero Squad and Star Wars: The Clone Wars. Norrin doesn’t quite understand the complex story lines but he likes the action and he now recognizes all the major characters.

Music. When Norrin was a baby, Joseph would rock Norrin to sleep listening to calming music like James Taylor and Bob Denver. Joseph is always introducing new music to Norrin. Some music Norrin likes – for the longest time, Norrin would only listen to “Get off of my cloud” by The Rolling Stones. And some he doesn’t – when he doesn’t, Norrin sticks his fingers in his ears and says, “Too loud, Dad. Lower the volume.” Like everything else, finding the right music is about trial and error.

Video Games. Joseph’s like a big kid when it comes to playing video games. And his love of video games was something Joseph wanted to enjoy with Norrin. Video games have helped Norrin in so many ways but mostly it’s been a critical piece of their bonding time.

Sports. There was a time when Norrin didn’t have the strength to throw or catch a ball. It took years of occupational therapy for him to learn. Norrin still struggles with his movements for many things, and he gets easily frustrated. But Joseph gets him to keep trying.

At first Norrin wasn’t interested in playing baseball. But Joseph broke the basics of baseball down. He began teaching Norrin how to catch the ball in his glove. Then how to throw the ball. Norrin loves playing catch and often asks to go outside and play. No matter how tired Joseph is, when Norrin asks – they’ll go outside and throw the ball around.

When I see Joseph and Norrin together I feel really lucky. Bonding with Norrin hasn’t always come easily but Joseph works really hard at finding ways to connect with Norrin. And seeing them interact together, watching their bond grow is a beautiful thing.

Catch up with last weeks post: A Tough Love Moment in Autism Parenting 

 

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