Posts Tagged ‘ health ’

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

And from my other blog:

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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A Tough Love Moment In Autism Parenting

Wednesday, May 28th, 2014

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

The other day my friend was over when my 8-year-old son Norrin walked in and asked to use the iPad. I knew he had a mess in his room. I had spent the last hour asking him to clean up. There were sheets of paper and crayons all on the floor. I told him that if he wanted the iPad, he needed to clean his room. And that’s when he started to cry.

“I’ll help you Norrin,” my friend offered, starting to get up from the sofa.

“No. He needs to do it himself. He knows how.” I said.

Norrin kept crying and asking for the iPad. I kept saying, “No. Not until you clean your room.”

I could tell my friend was getting upset. She has a soft spot for Norrin. If it were up to her, she would have given him the iPad and picked up every single piece of paper and crayon herself. But I just kept talking, enjoying my visit with her.

I don’t like seeing Norrin cry (I hate every single second of it). And I certainly don’t like being the cause of his tears (makes me feel like the worst mother in the world). But I can’t give in every time he gets upset. He has to understand the meaning of “no.”

Was it easier to go in and help him clean? Or just let him leave his room a mess and give him iPad anyway? Of course it was. But how would he benefit from that? If Norrin was a typical kid, I wouldn’t allow the same behavior. I can’t expect Norrin to become independent, if I help him every time he cries for something.

I wasn’t asking Norrin to do anything I knew he couldn’t do himself. He knows how to pick up paper and throw them away in the garbage. He knows how to pick up crayons and put them back in the box. Norrin’s tears had nothing to do with autism. It was about him not wanting to clean his room.

So I let him cry. And as upsetting as it was, I knew Norrin wasn’t in any physical pain or in danger of hurting himself. Eventually he cleaned up his room and when he was done, I gave him the iPad.

It’s called tough love for a reason. It’s tough on kids and tougher on parents. But I know that my little moments of tough love special needs parenting will teach Norrin about independence and responsibility.

Catch up with last weeks post: 5 Tips for Traveling By Plane with Your Special Needs Child

From my other blog:

 

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5 Tips for Traveling By Plane with Your Special Needs Child

Wednesday, May 21st, 2014

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

In a few weeks, we’ll be on our way to the Most Magical Place on Earth. It will be Norrin’s second time on an air plane. Unlike the first time taking a plane together, I am not nervous. The first time we flew, I was frantic even though I prepped for months. But there was no need to worry. Norrin really surprised me and I was so proud of him.

Traveling with special needs children requires careful planning. If your child has never been on a plane and you’re thinking of planning a vacation – here are some tips that can help.

Prepare. Even if you don’t have any immediate plans for a trip, start talking about planes and pointing them out to your kids. Talk about the kind of places or family/friends you can visit by taking a plane. Many kids with autism and other special needs, require social stories to help them through new experiences or teach everyday skills. Carol Gray has written two books that may help: My Social Stories Book and The New Social Story Book

There’s also a really cool app by Avril Webster called Off We Go: Going on a Plane. The app prepares special needs children and also includes “some of the typical sounds that they would hear during their journey.” The Going on a Plane app is $3.99 and compatible with iPad, iPhone or iPod touch.

Do Your Homework. Think about the airlines and airports you’ve traveled with in the past – which ones gave you the best experience? If you have friends that have traveled with their special needs children – ask for suggestions. Call airlines and see what accommodations can be made for your special needs child before making your final decision.

Another thing to consider is the duration of the flight. If your child has never flown before, don’t book a 5 hour plane ride or one with multiple layovers. Keeping it under 3 hours is probably ideal.

Pack Light (if you can). Traveling by plane requires a lot of waiting and long lines. If you can manage to do carry-on luggage only – go for it! That way you avoid the checking in your bag line and waiting to claim your bag after.

Prepare some more. You want to keep your kid occupied for a significant amount of time so a bag of goodies is a must! Load up the iPad or tablet with new apps or buy a new toy or activity book for the ride. Bring candy or a special treat for your child to enjoy. And don’t forget to pack any other special items like noise-cancelling headphones or favorite comfort item, pillow or blankie. It could be the thing that prevents a meltdown.

And Speaking of Meltdowns. A mom wrote to me and expressed concern about her child having a meltdown on the plane. “Prepare for the worst, hope for the best” as the saying goes. If a meltdown occurs, deal with it the best way you can and forget about if people stare – just focus on your child. If you anticipate a meltdown prior to boarding the plane – talk to the flight attendants. They want to ensure you have a pleasant experience, so do not be afraid to ask for help if you need it.

From my other blog:

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Should Special Needs Moms Have Their Own Mother’s Day?

Wednesday, May 7th, 2014

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

With Mother’s Day approaching and Father’s Day next month, I am reminded of something my friend, Jessica, posted on Facebook. Jessica was having one of those up-and-down days only a special needs parent can understand. The mom of three kids, Jessica’s 9 year-old son has autism.

As I direct my son to pick up his chewed up and spit out pretzels from around the house for the umpteenth time today and have my sleeve tugged on yet again before I prompt him to tap and say excuse me, and hold him tightly to get him to stop hitting his own head, and then bathe in the sweetness of his beautiful smile when he tries to climb his 9 year old sized body into my arms, I do believe there needs to be a mother’s day specifically for moms of kids of special needs. Yes…parenting all kids is challenging. But sorry folks, on a day to day kind of level, it’s just not the same thing.

I don’t like to play the “hardship olympics.” But when I think about all the ways parenting a child with special needs is different…it makes my head spin. At the same time, I am still a mother and I’m celebrated on Mother’s Day.

I reached out to other special needs moms for their thoughts on whether or not special needs parents deserve their own day. Here’s what they had to say:

…Sometimes you feel like no one in your life acknowledges how much extra effort you have to put into everything, how much has been handed to you that you’re not able to do, and all the additional worries you have about your child’s future. It would be nice to have a day set aside to acknowledge that just once. [But] I don’t want my kids to feel that their differences are a reason we should be singled out as a family, whether it’s them or me. I am still trying to learn how to walk the fine line of celebrating what makes us unique and not focusing too much on what makes us different. — Jessica, Don’t Mind the Mess

I have mixed feelings on this. I do think we deserve props for all that we do as special needs parents–and we do a LOT. And then some! But I hesitate because there are times when I feel a gap between me and parents of typically-developing kids, and I’m not sure I’d like to further distinguish ourselves. One thing’s for sure: Our families should totally kiss up to us on Mother’s Day–and Father’s Day too! — Ellen, Love That Max

Being a mother to children with and without special needs, I definitely believe we deserve a day of our own. As a special needs parent you are faced with so many obstacles. A simple trip to the local park requires special planning and strategizing. A special needs parent has very little ”me” time. I think it would be great if there were a day to celebrate our hard work and accomplishments. — Lizette, Diary of a Loving Mom

I do not think it is necessary. We already have a general mother’s and father’s day. Let us continue to celebrate [special needs parents] in our own unique ways. There is really no need to have separate days. Right now my son can’t tell me I love you or Happy Mother’s Day, so I have to think outside the box on Mother’s day and remember that he loves me regardless. – Kpana, Sailing Autistic Seas

Whether or not you agree, this Mother’s Day (and Father’s Day), be extra nice to the special needs parent in your life. April was Autism Acceptance month – a time to raise awareness and acceptance for individuals with autism. Special needs parents need acceptance too. Just like we celebrate our kids for all that they do, sometimes special needs parents require the same recognition from their family and friends.

From my other blog:

Tell mom you love her this Mother’s Day with an “I Love You” bookmark.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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