Posts Tagged ‘ health ’

From Special Education Teacher to Autism Mom Blogger

Wednesday, August 20th, 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, I didn’t know anything about the diagnosis or navigating the special needs system. I was able to talk to friend of a friend who was a speech therapist. She provided the emotional support I needed and helped me better understand the process. A few years later, her son was diagnosed with autism. She called me up crying and I gave her the support she needed.

Being a special education professional, doesn’t always make the diagnosis was easier to accept or understand.

No one knows that better than Mama Fry who writes the blog Autism with a Side of Fries.Written with honesty and humor, Mama Fry doesn’t pretend she knows all the answers – even though she once worked in special education. She even wrote a post about her experience sitting on the other side of the IEP table.

Earlier this month, I got to ask Mama Fry a few questions:

What did you know/think about autism when you were a special education teacher?

Not nearly enough. I haven’t been in a classroom for about 9 years now and much has changed. Back then it was more about getting kids to be all the same or “normal” rather than celebrating and tapping into their skill sets.

How did you advise autism/special needs parents?

My area was vocational training. I was thinking past school. Getting them ready for what real life job situations might happen. Most of my conversations with parents then was problem solving behaviors or trying to figure out accommodations that would suit their kid best.

What was it like when your son was diagnosed?

Surreal. It absolutely never occurred to me that he might have autism. I thought it was a speech delay and that’s it.  I was truly gobsmacked. I had recently stopped working outside the home because working with autism was burning me out. Surprise! It came to live with me instead.

How have you changed since? 

I understand how each kid is just so different. My son is not just a name on a page to me. He’s my heart.  I can’t punch out at the end of a shift. Behaviors are communication not just non compliance.

What advice would you give to special ed teachers who don’t have special needs kids?

Ask about what’s going on at home. Sleep is a huge factor. Eating too. Realize the student you have, their behaviors could be based on those two things a lot.  Ask what concerns the parents the most. Share what’s working in class.

Catch up with my last post: A Little Girl Gets a Second Chance at Childhood

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

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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

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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