Maureen & Ryan with Beast

Me, the Beast and Ryan at the 2013 Beast on the Bay

Register now!  The 2nd annual Barber Beast on the Bay and Maureen Riazzi Adaptive Course for persons with disabilities will be held Saturday, September 6th at Presque Isle State Park in Erie, PA.  The adaptive, 1.2 mile course begins at Beach 1 and includes 6 obstacles.  You can walk, run or wheel your way to the finish line.  This course is designed for everyone!  Participants must be 16 years of age or above.  You can bring a course buddy if you want or compete by yourself.  There is no fee for the course buddy.  Check out the photos from last

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2013 Adaptive Course Obstacle

year’s adaptive course.  Registration is only $25.00.  All participants receive a medal and a t-shirt.  Sign up now as there is only 165 days to register.

We are excited to have 700 competitors from 14 states already registered for the Beast.  It is sure to be a huge success.  Ryan described last year’s race as “awesome” and is looking forward to this year.  Last year we had 70 participants compete in the Riazzi Adaptive Course and we hope to double the number this year.  Help us reach our goal!

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Celebrating World Down Syndrome Day

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Wearing crazy socks to start a conversation about WDSD

Friday was World Down Syndrome Day (WDSD).  Why celebrate WDSD?   We want to promote awareness and understanding, seek international support and achieve dignity, equal rights and a better life for people with Down Syndrome.  

It is hoped that the activities and events will have a tremendous impact showcasing the abilities, talents and accomplishments of people with Down Syndrome.  I encourage you to watch these two inspiring videos.  Then tell your friends and family why it is so important to celebrate this day.

Rome restaurant serves up new attitude toward Down Syndrome

Moving video for a mom-to-be whose baby has Down Syndrome

 

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Startling New Report: Obesity Among Teens With Autism

TRR_9160I was startled to read the latest report from the Center for Disease Control & Prevention (CDC) on the rate of obesity among teens with intellectual disabilities and autism:

  • 13.1% of teenagers without developmental disabilities
  • 20% of teenagers with intellectual disabilities
  • 32% of teenagers with autism
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Ryan golfing

With obesity comes other health problems, including asthma and migraine headaches. An additional study last month associated obesity in children with ASD with increased anxiety, depression, and sleep problems. Certainly, some of the children with autism experience nutritional problems. Others are challenged by the use of psychotropic medications, which can cause severe weight gain. So, there are a number of factors to consider when examining causes of obesity.

Here are some previous blogs that I’ve written that address exercise and obesity:

TRR_0245Given these latest statistics, I am even more grateful that Variety’s “My Bike” program has recently expanded to Erie County! Variety’s “My Bike” program gives customized, adapted bicycles to eligible children with disabilities. The program’s goal is to offer these children a chance to have more opportunities to spend time with their families. This will be a great extension of our own adapted biking program at ELBS – many of our students blossom while riding bikes around the school gym. To have the opportunity to share this experience with their families outside of school is a real blessing.

Whether it is bicycling, walking, running, or swimming, let’s get our children active and begin to help fight this epidemic of obesity!  Please let me know what your favorite family fitness activities are.

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200 and Counting!

My 200th blog!  I have been read by Robot, Child & Teacher11,821 visitors from over 113 countries.  Some of the topics that I have written on include:

My Journey
I Have Autism: Ryan’s View
Is Your Child Being Bullied?
Overcoming Communication Barriers with Technology
DSM 5: What’s the Big Deal?
iPad: Knowing When It Is Right For Your Child
An Open Thank  You Letter To Teachers
You Don’t Have to be Holly Robinson Peete to be Aware of Autism
Finding the Right App for your Child

Aiden Krane, age 3, with robot.Today I had a fascinating opportunity to Skype with Dr. Karen Guldberg, director of University of Birmingham – Autism Centre for Education and Research (Acer).  I had read in the CEC SmartBrief about a robot named NAO helping children in a primary school in Birmingham explore technology.  We, of course, have been working on a project with a robot named NAO in determining the interests of children with autism with this technology.  I wondered whether they were seeing the same trends that we were so I sent off a quick email detailing our research and interest in collaborating.

What did I learn?  United Kingdom facesnao many of the same challenges as we do.  They too have experienced the tsunami of adolescents with autism becoming adults.  Interestingly, new laws will go in effect next year which will expand services for persons with autism from birth to twenty five years of age.  They also hope to integrate the departments of Education, Care and Health to better meet the needs of persons with autism.  We in Pennsylvania often decry the fact that our departments of Education, Welfare and Health are silos which never communicate.

Nao Robot helps children with AutismDr. Guldberg is very interested in bridging the research and practice communities so that all children can benefit from this knowledge.  Technology enables us to break down geographic boundaries with Dr. Karen Guldberg (link to her site). We will continue to share our research practices and knowledge via email and Skype.

Learn more about Dr. Guldberg’s and BNI’s research.

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I was planning on writing my blog today on ending the r-word.  In my research I came across a short video written by a mom that explains what the word means to her.  This video is more powerful than any word that I can write.

I would encourage you to view it and if you have not yet done so, to pledge your support at www.r-word.org.  Join the 471,646 persons who have already made the pledge and then spread the word on your favorite sites.  Together we can create more accepting attitudes and communities for all people.

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How Are You Celebrating Read Across America?

Crazy Hat Day

Which American writer has had the greatest impact on children’s literature?  His birthday, March 2nd, is the date that is annually designated as Read Across America day.  Yes, you’re right – it is Dr. Seuss!

Crazy Hat Day 3

Everyone is having fun with today’s Crazy Hat theme!

As we began planning Dr. Seuss week at the BNI I realized how little I knew about Dr. Seuss and decided it was time to learn more.  Theodore Geisel was born March 2nd in Springfield, MA and grew up in a prosperous extended family.  It was during college that he discovered his love of designing books with pictures and words.  He added the title Dr. before Seuss (his mother’s maiden name) to lend credibility to his writing and characters and in reaction to his father’s wish that his son would get a doctorate.  He wrote two to three books a year almost without pause between 1957 and 1976.  He wrote Green Eggs and Ham on a dare.  His publisher bet him that he couldn’t write a book only using 50 different words … and he did, Green Eggs and Ham.   His final book Oh, the Places You’ll Go was published in 1990.

Why has Dr. Seuss endured?  Young children enjoy his imaginative characters, vivid illustrations and catchy rhymes.  They can read Dr. Seuss books many times without tiring of the rhythms, plots or art.  For older children the moral lessons in Dr. Seuss stories contribute to the learning experiences.

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Jim Dible celebrating Dr. Seuss’s birthday in style.

There has been a buzz in the school all week as we celebrate Dr. Seuss and Read Across America.  Over 50 readers including our mayor, senator, county executive, business executives and friends have visited our school to read a Dr. Seuss book to our children.  Why is this so important?  We know that by the age of 3, children born into low-income families heard roughly 30 million fewer words than their affluent peers.  Only 53% of children, ages 3 – 5, are read to daily by a family member.  Yet, children who are read to frequently are also more likely to count to 20 or higher, write their own name and read or pretend to read.  The Presidential Proclamation for Read Across America Day 2014 states, “literacy is the foundation for every child’s education.  It opens doorways to opportunity, transports us across time and space, and binds family and friends closer together.”  I so agree!

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RJ Zonna reading his favorite Dr. Seuss book as we celebrate Read Across America.

As this day comes to a close pick out your favorite Dr. Seuss book to read to your child.  You can also check out some tips for reading out loud and how to inspire your students to become lifelong readers.

I’m going to reread Ryan’s favorite story Green Eggs and Ham – what about you?

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Now Hiring! Adult Training Programs Prepare Individuals with Disabilities to Join the Workforce

As a parent we often TWS Collagefocus on getting through the school year and seldom have the time to ponder what happens after graduation.  At BNI we have a program that supports young adults as they transition from school life to workforce life – Transitional Work Services (TWS).

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Ryan with his TWS award

I was especially honored today to receive an award from the TWS team for my efforts to promote the program through television and social media.  Each month TWS hosts an awards ceremony to recognize those individuals who are excelling in TWS, those who are now working in the community, and those with perfect attendance.

Local businesses including Erie Insurance Arena, Millcreek Mall, Tim Horton and Bello’s were a few recognized for hiring in the past month 15 graduates of TWS for their workforce.  In accepting the award I suggested that I’d prefer to honor all the young men and women who are participating in TWS.  They are my heroes! 

Geoff Gloeckler & MBC

Geoff Gloekler – A TWS Employee and Award Winner

One of the awardees for perfect attendance is Geoff Gloekler.  As a preschool student he attended our school, graduated and then moved onto the Erie School District through high school.  He returned to TWS and today is a role model for his peers.  Geoff told me that he loves working and really enjoys cleaning.  When asked what his favorite job was Geoff immediately responded cleaning bathrooms.  I applaud Geoff Gloekler, our TWS participants, their supervisors and job coaches. 

If you know of a local business who may be interested in hiring our TWS graduates feel free to contact me.  You too can make a difference in the life of a person with a disability.

To find adult training programs and services in your area please visit Autism Speaks.

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A Boy With Autism Is Increasing Autism Awareness One Necklace At A Time

Drew Elliott - Age 8

Drew Elliott (from Drew Elliott & Friends FB page)

Earlier in the month I wrote about the challenges children with disabilities have in making friends.  Sadly, I look back over Ryan’s school years and remember that in those 12 years he was invited to two birthday parties of his classmates.  For that reason I was truly inspired when I read about the eight-year-old boy with autism in Boise, Idaho, who began a movement with a friendship necklace.

The story began when Drew Elliott told his mom that he asked a bunch of his classmates to wear the other half of his BFF necklace.  No one was willing.  Fortunately, his conversation with his mom was overheard by a group of construction workers and they told Drew they wanted to wear one.  However there was a catch.  The construction workers would only wear a necklace if Drew made them himself.  The word spread via social media and soon there were hundreds of people requesting necklaces.  With over 2,600 likes, Drew’s mom said, “He truly feels that he has friends everywhere, instead of acquaintances.”

Drew Elliott - Fan Club

Drew Elliott Fan Club (photo from Drew Elliott & Friends FB page)

What can you do?

  • Like his Facebook page Drew Elliott and Friends
  • Contact Drew for your necklace and make a donation
  • Host your own Friendship Necklace party

Most importantly reach out to a child with autism and let him/her know that you are a friend.   Please read my earlier post to get ideas on how to encourage friendship between typically developing children and children with special needs.

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Love Your Pet Day – A Day of Celebration

Did you have a pet growing up?  My famikerryblue011ly had Doodles, a spirited Kerry Blue Terrier who we all adored.  Doodles was very gentle, loyal and affectionate.  He would even allow little children to ride him like a horse.  I remember my special bond with him and that he was an excellent secret keeper.  Each of us had Doodle responsibilities, whether it be taking him out for a walk, feeding him or picking up after him.

child and catThere are many benefits to having a pet if you have a child with special needs.  A pet can provide comfort to a child who is anxious by generating a calming effect that reduces stress.  Your child can acquire a sense of self satisfaction by learning how to care for his pet and having his pet depend on him/her.  There are numerous social advantages as well.  Taking your dog for a walk in your neighborhood or on the beach is the perfect way to practice greeting skills.  Everyone loves a beautiful dog.

Certainly there are considerations.  A pet requires work, many responsibilities and expenses.  You need to consider your lifestyle as well as the demands of your child.  Ryan has not had a pet because I recognized my limitations due to my work 2.14.14 Valentine's Day Cardschedule, his schedule and other challenges.

If your family is ready for a pet there are many resources that can guide you in the right direction.

Jessie & Eliz

Jessie bonding with Eliz, a student at ELBS.

“Animals offer all children the chance to connect to another living being,” says Adrian Sandler, M.D., head of the American Academy of Pediatrics’ Committee on Children with Disabilities.

Here are some touching videos of pets loving their humans and vice versa.
A Heartwarming Story about a Boy and His Dog
Jessie – A Service Dog at our School
A Soldier and His Dog

Please share some of your favorite stories of you and your pet and celebrate Love Your Pet day with us.

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As I read that February ispediatric-dentist-denver National Children’s Dental Health Month, my thoughts turned back to Ryan’s first visit with the dentist.  I definitely approached it with anxiety, if not trepidation.  At 3, Ryan frequently had temper tantrums. The thought of introducing a new person, new location and a new procedure was troublesome.  However, Erie has a pediatric dentist who specialized in working with children with special needs.  As soon as I found that out, I was quick to schedule an initial introductory appointment.

?????????????????????Our first visit was “getting to know you” for both Ryan and the dentist.  He was able to experience the routine of the office visit, have a cursory look at his mouth, receive his stickers for reinforcement and be off.  On subsequent visits, the dentist or hygienist would explain what they were going to do, show him their tools and allow him to hold them and then complete the procedure.  There was always lots of praise and the opportunity to play on a Game Boy upon completion.

As he grew older, his tolerance increased and for the most part our problems were minimal.  However, I’ll never forget the visit that as our dentist was counting his teeth, Ryan bit his finger.  I was mortified.  As soon as we went home Ryan wrote a letter of apology to the dentist and asked if he could please come back.  And he promised to never bite him again.

I share this personal story because I think many parents struggle with visits to the dentist.  Fortunately, today there are many resources that I did not have 17 years ago.  Autism Speaks has a dental guide.  There is even a My Healthy Smile app for iPhone and iPad.

Ryan's Graduation Picture 2013
Ryan’s beautiful smile

As you plan your visit I would suggest that you consider:

  • What time of the day is your child at his/her best?
  • What time of the day is the least active in the dentist office?
  • Who can accompany you as a support?
  • How familiar is the dentist with the specific disability of your child?
  • What do you want the dentist to know about your child?

I’ve also summarized a number of articles that may assist a parent with their child’s dental health.  Oral health is essential for daily healthy living for children and adults.  It’s never too early or too late to start.

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