Archive for the ‘ Health ’ Category

13 Holiday Tips for Special Needs Parents

Thursday, November 20th, 2014

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

Another holiday season is upon us. And holidays mean family gatherings, parties and shopping – it is sensory overload. Having a kid with autism this time of year can be challenging. But over the years it’s gotten easier for us and I’ve learned some things along the way.

Today I’m excited to share 13 Holiday Tips for Special Needs Parents from Cara Koscinski, occupational therapist and author of  The Pocket Occupational Therapist Book Series.

Shopping

  • Allow children who are overwhelmed by sights and sounds of shopping to stay home. Allow kids to have a pajama and movie night while you’re shopping.
  • If a child must attend the shopping trip, schedule downtime or breaks for children to de-sensitize. This can be located in the car with some crunchy snacks, a weighted blanket, and some calming music.
  • Encourage children to make a list of preferred toys well in advance.  Give family lists of toys to choose from.  I even purchase the toys my children will enjoy and provide them to my local family members ahead of time.  We sometimes have a “trunk sale” and everyone chooses which give they will buy and wrap for my boys.

Family Photographs

  • Go at a time of day when children are well-rested and not hungry.  Do not rush and arrive early.
  • Write a letter or speak to the photographer ahead of time.  Most studios will schedule extra time for children who have special needs.  Request a photographer who is patient.  If possible, schedule a photographer to visit your family outside of the studio.  We have found that this may be a more affordable option than a studio because of low-overhead costs.
  • Be flexible.  Consider that “fancy” clothes are often scratchy, have tags, and may contain textures that aren’t familiar to children.  Permit the child to wear comfortable versions of colors that you’d like the family portrait to have.

Visits with Santa

  • If children do agree to see Santa, create a social story with pictures of Santa, including his beard, velvet/soft red suit, and the setting in which Santa will be located.  Go to the location prior to the visit and watch other children.  Practice, practice, practice!

Family Gatherings

  • Create a “safe-zone” to which the child can go whenever they feel overwhelmed.  Set a password or sign that your child can use to excuse himself.  Place a bean bag, calming music, a heavy blanket, and favorite hand fidget toy in the area.  Practice ahead of time.
  • Create a letter to family members prior to family gatherings to explain your child’s wonderful progress toward goals and suggestions for conversation topics. For example: “Joshua’s had a wonderful year in therapy.  He’s learned how to tie his shoes, take one turn during conversations, and how to write in cursive.  Joshua likes Angry Birds.  Here’s a link to the Angry Birds’ website if you’d like more information.  Please know that even though he’s not looking directly into your eyes, he IS listening to you and loves you!”
  • At mealtime, make sure to serve a preferred food so that children who have feeding difficulties can successfully participate.

Holiday Parties

  • Give kids a job to do so that they will have a sense of belonging and success.  Even something such as helping to create place markers for seating or setting the table can give kids a feeling of accomplishment.
  • Remember that heavy work is generally calming.  Include activities such as moving chairs, picking up and placing dirty clothes into a basket and carrying it to the laundry room, or vacuuming are great ways to encourage children to help to prepare for the party.
  • Plan an “out” or an escape plan.  Even a short visit that is successful can create memories that last a lifetime!

The Holidays are meant to be fun. Enjoy them with your family!

And from my other blog:

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Broccoli Sprouts and Autism: The Latest Study

Wednesday, October 15th, 2014

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

Over the years, I’ve heard about many autism studies and theories. Some have made me laugh out loud,  others I completely agree with. But it seems as if every other week there is some new study. It’s getting tough to keep up.

This week’s latest study is all about broccoli sprouts and how it can help modify behaviors in autistic individuals. Well not broccoli sprouts exactly but Sulforaphane, the extract derived from broccoli sprouts. Sulforphane is also suggested to have an “anti-cancer effect.”

The study involved 40 boys and young men, ages 13 to 27, with moderate to severe autism. Of these, 29 were randomly selected to receive the supplement (50 to 150 µmol depending on weight). The others received a look-alike placebo, or “dummy” capsule. Neither the researchers nor the participants and their families knew who received the actual treatment until after the trial concluded. (Autism Speaks)

Over the 18 week study, nearly half responded to treatment.  ”Most of these individuals began showing improvements during the first four weeks and continued to improve during the rest of the treatment.” However it’s important to note that during the study, two individuals taking the Sulforaphane had seizures. While they had a history of seizures, it is unclear whether or not Sulforaphane caused them to have one during the trial.

When I shared this study on my Facebook page, I made a joke about it. Because by the headline it seemed a bit out there (and I hadn’t read the research). But one mom asked whether or not I would try it. Honestly, I don’t know. If it were a vitamin supplement – maybe. Someday. I’d need to see more research first. (I’m still trying to decide if I want to start Norrin  on medication for his ADHD.)

One thing that has me on the fence, is that Sulforaphane is known for cancer prevention and treatment. And I think it perpetuates the idea that autism is a disease in need of a cure. I am not interested in a cure for my kid.

I think these autism studies give parents false hope, because there are parents willing to try anything and everything to “fix” their kid. When they try something that works for some kids and not theirs, those feelings of loss and guilt return. I know because I’ve been there.

Research has shown that children who receive early intervention services will show significant improvement. Yet so many children go undiagnosed by three years old especially among minorities.

Autistic kids need more resources. Parents need more support especially as their children grow older. That is where I would like to see research money spent – on providing the resources and support our kids need to learn, thrive and live full lives.

How do you feel about this latest study?

And from my other blog:

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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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

From my other blog:

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