Calling All Shoppers!

Couple-After-Shopping It’s that time of year, back to school and end-of-summer sales! Did you know that you can shop, save, and give all at once? “Shop for a Cause” is a national event that takes place on Saturday, August 24th at Macy’s stores nationwide. So why participate?

Four reasons to Shop for a Cause:

  • If you’re like me, shopping is fun–a relaxing time away from the daily routine.
  • You’re a fashionista who thrives on sales.
  • It’s back to school time, and you can save on new clothes, shoes or supplies for the kids.
  • Support children with disabilities in a simple, fun way.

How to give back?
Simply purchase a $5 savings pass (at the BNI) and our school keeps 100% of the proceeds from the sales of the passes. And when you shop on the 24th you can enter to win a $500 Macy’s gift card.

Where to get passes?
You can purchase your $5 shopping pass by visiting the BNI or mail us a check and we’ll macys-shop-for-causesend you the pass. Contact the school office at 878-4052 or mail your check to:

Shopping  Pass
c/o Elizabeth Lee Black School
100 Barber Place
Erie, PA 16507

Join me in the “Magic” of giving back! See you at Macy’s.

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Best Buddies: A Student’s View

best buddies

I had the privilege to chat with Joe about his experience at the Best Buddies Leadership conference and couldn’t wait to share my interview with him. I hope you are as encouraged by him as I am.

How was the conference?

“Awesome. Best Buddies has so much support nationally and internationally; the magnitude is amazing. 52 countries participated and 1,800 kids attended (University of Indiana). The key note speaker was Lauren Potter, one of the stars of the show Glee. She has Down Syndrome. She said that all her life she dreamt of being an actress, and everyone told her she couldn’t do it. She said ‘Look at me now, I’m on a hit show. So to those who say you can’t, you can!’  She inspired us to do what we dream and she’s an inspiration to kids with disabilities. Amazing!”

Why Best Buddies?

“When I would see the kids in the life-skills class at school (McDowell) I noticed they had no friends outside of class. It didn’t seem right. But, before that spending time at the BNI and seeing how kids with disabilities just wanted friends or to be included and how simply listening to their story made them feel valuable. Plus, spending time with Ryan. Ryan wants a friend and he’s taught me a lot. Honestly, everyone wants friends or to be included. Why not work with an organization that focuses on friendships especially for kids who are overlooked as “worthy” friends just because they have a disability.”

Tell me about your chapter at McDowell:

“This is the first Best Buddies Chapter in Northwest PA and the only one in the area. The closest chapter to us is in Pittsburgh. We are a pilot site. If this works, then Best Buddies would expand to other schools.”

You start your junior year this fall as the Chapter President. What are your goals for the year?

“Well, currently we have 19 kids in the chapter. Our official match (when we are paired with a buddy) happens in September. I’m looking forward to that happening first. Second is to increase awareness, especially with the Spread the Word to End the “R” Word campaign at McDowell. Third, I’d like to have a combined party with another group in school, like the Spanish club. We could partner together which would integrate students meeting each other  in a fun way.”

What, if anything, did you learn about advocacy?

“Advocating is the core. It’s giving a voice to all kids with disabilities, showing typical kids it’s ok to be friends and, ultimately, being a friend and not an enemy.”

Being a buddy is all about giving back. Tell me what you get in return.

“The biggest reward is simply the excitement on my buddy’s face when I walk in the room and say hi to him. Just being there, with him, treating him as a person and seeing his face light up…amazing.”

What’s the biggest hurdle for students or kids who don’t volunteer to overcome?

“I think most high school students don’t know how hard and different school is for someone with a disability, whether physical or intellectual. Helping typical kids see life through another’s eye through something like being a friend is the biggest challenge. But once they do, they get an amazing friend and the student with a disability gets a true friend, value and acceptance to be their self.”

What’s a challenge for your chapter?

“Fundraising. I learned a lot of good ideas for fundraising and advocacy from the conference. Fundraising is hard, especially when there are so many good organizations out there. But, doing a Friendship Walk in Erie is one idea. The Friendship Walk is one of Best Buddies most well-known fundraisers. So I’d like to work to start one here in Erie. Doing a “Wing-Off” where it’s teachers vs. students in a chicken wing eating competition and donations are how you vote.”

What can our community do to support you and your schoolmates?

“In order for us as students to make a difference we need community members and leaders to support us by helping us spread the word. They can also volunteer to donate food, let us take the group bowling for free or donate transportation for us to attend the Best Buddies Ball in Pittsburgh. This is the biggest event of the year. It’s like a prom for kids with disabilities and their buddies. It would be amazing if we could attend that event! But, our biggest need is an advisory board. These would be 12 community members or leaders who would help us with advocacy and fundraising. We need the advisory board to help establish us in Erie.”

Tell me your long term goals.

“First to have a lifelong friend. Second is to attend college and hopefully there is a Best Buddies chapter there to continue the streak. Ultimately, either through law or other options, I want to advocate for those with disabilities. I want to do something with my life that makes a difference for them.”

Joe and his friends are leading the charge for our community. They are the change agents we need for the future of children and adults with disabilities. Joe saw something that didn’t seem right and is doing something about it. He sought answers to make something better for someone else even though it’s hard work.  He reminds us, as Lauren Potter reminded him, “To those who say you can’t — You can!”

You can support the Best Buddies chapter by contacting Joe at JBPINTO77@GMAIL.COM

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The 7 Minute Difference

7Did you know that over the next decade, more than 500,000 persons with autism will become adults? And, did you know that 80% of adults with autism younger than 30 years of age reside at home?

Talk to any parent/caregiver and you’ll quickly learn that finding housing supports for adults with ASD is extremely challenging and in many cases impossible. I recognize this challenge as Ryan is 19 and completed high school. I also know that I’m very fortunate to have a great group of young men who work with Ryan at home and that this doesn’t hold true for most families. I wish it did.

Every day I see and talk to parents/caregivers whose children are aging out of the school system. They are worried about what the future will bring.  For this reason I see the importance of speaking out and advocating for all families/caregivers and joining with Autism Speaks as they lead the charge.

How are they doing this?

Autism Speaks is asking both persons with autism 14 years or older, as well parents/caregivers of persons with autism, to complete a survey. This simple seven minute survey asks you what you think your child will need when he or she turns 21 years old.  This data will assist in establishing a national strategic plan for housing. Autism Speaks hopes to receive 10,000 responses by August 9th.

Another survey?

I myself have completed many over the years and wonder when the data from the surveys will become an action plan with funding attached. It is frustrating. However, unless we provide the information there is only anecdotal comments and not substantial data that the Federal Government requires.

I encourage you to complete the survey and we both can watch for the results. As a BNI friend and supporter, Jim Dible, said “We cannot be what we need to be by remaining what we are.”

Let’s join together as we move forward. Take seven minutes to make a difference.

Link to Autism Speaks survey : http://www.autismspeaks.org/housing-survey

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Preschool and the Economy: What’s the Impact on the Future?

SONY DSC
“Third grade reading levels and absenteeism predict, with 90% accuracy, high school drop-out rate.”

 I was startled by this statistic as I sat listening to the details at the Investing in Kids: Can Early Childhood Education Be an Economic Development? conference yesterday afternoon.  As the stats were reported, I was astounded by the impact on our children.

For instance:

  • 44 out of 50 first graders who have experienced difficulty in reading will continue to have difficulty in fourth grade
  • 30% of Erie county children are below proficient in reading Continue reading
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Autism & The DSM-5: Doorstop or Diagnostic Tool?

DSM-IVThe definition of autism has evolved over the years. I remember teaching (many years ago) when children who are now considered on the spectrum were diagnosed as “mentally retarded with autistic tendencies”. Then DSM-IV was published in 1994, and we began using the terminology including “PDD-NOS,” “High Functioning Autism,” and “Asperger’s.” Ryan was diagnosed in1995 under this version’s criteria.

The DSM has always been considered the “go to” when diagnosing. It carries weight because it’s one benchmark people use, diagnostically and in research, to identify autism. The new version, DSM-5, streamlines autism under one single umbrella disorder, which is believed to improve the diagnosis of ASD without limiting the sensitivity of the criteria, or substantially changing the number of children being diagnosed. Also, children and adults previously diagnosed under DSM-IV criteria will continue to be eligible for services. However, concerns remain on the implementation of DSM-5.

A recent study showed that 46% of toddlers diagnosed under the new DSM criteria no longer meet the autism diagnosis. The study looked at challenging behaviors of 3,300 children ranging in age from 17-37 months. The largest group was children who didn’t meet the criteria for ASD under the new DSM.

It’s still uncertain if and/or how the new diagnostic criteria will be a doorstop or helpful diagnostic criteria. What is certain is that it will affect children, families, therapists, teachers and insurance companies. As the effect of the new criteria unfolds, I am hopeful that educators, doctors and advocates will monitor the developments closely and work to make sure children and adults on the spectrum receive all the assistance needed to live an abundant, meaningful life.

If you or your child have been diagnosed using the DSM-5, please participate in a study being conducted by Autism Speaks: http://www.autismspeaks.org/what-autism/diagnosis/dsm-5/survey/individuals

Let’s continue to make dreams come true for all of our children!

 

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Are You Going To Beat The Beast?

ImageMark your calendar for Saturday, September 7 at Presque Isle State Park for the Barber Beast on the Bay.  You may have already seen publicity for the extreme obstacle challenge for adults, BUT we also have an adapted course, and yes, this is a fun event! If you are an adult, 18 years or older, and have autism or a developmental or physical disability, you too can participate.

You can “do your own thing” to get through it; walk, run, roll through in your chair, or be pushed in a chair by your buddy. Along the mile and a half route, you will navigate over paved road, packed dirt, sandy beach, grass, and ramps. You will encounter six obstacles including a cannon ball shuttle, boat rowing, wall climbing, beach run, and our version of Misery Bay (where you’re likely to get wet!)   Continue reading

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Thoughtful Thursday Ideas

child and flowersBetween June and September kids can have approximately 82 days of summer vacation. How do you fill all those days? In many of my blogs I talk about keeping a schedule during holidays, vacations, and especially, during the summer.  It may seem repetitive, but it was so important for Ryan. One of the tricks I found that worked for the summer was to have a specific topic for each day and then build an activity or more around that topic. For instance, Mondays were cooking day (or as Ryan liked to call it – “cheffing”), Tuesdays we might visit the museum, photography on Wednesday, go exploring on Friday.

But, today is Thursday, and Thursdays for us were always “thankful day.” Sometimes we volunteered by weeding at Frontier Park, picked flowers in our garden to give to someone who helped us, or emailed a friend, thanking him/her for what they had done for us that week. Below are 12 thoughtful Thursday ideas to consider, Continue reading

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Transition Services: Moving to Multiply

The stories on research, education and support related to children with autism seem to appear daily. Awareness is growing, and so are the children. Approximately 50,000 individuals with ASD turn 18 each year in the United States. What happens when children diagnosed on the autism spectrum grow up?

I think about this often now that Ryan is a young adult. We formally began planning for transition when he turned 14 years old.  However, even in his elementary years I focused on transition. I’d often consider: “Is this skill functional that he will be able to use as an adult?” Parents often wonder: “How will my child get assistance with employment, housing, transportation, higher education and other services?”

Since autism is a spectrum disorder, the required resources and services may range from group home living to supported living, vocational training or employment. And yet, young adults on the autistic spectrum may qualify academically for college, yet struggle with other aspects of college life. So, how do we answer the demand?

The nation is responding. The Assistance in Gaining Experience, Independence and Navigation Act of 2013, or AGE-IN Act, is a national call to action to ensure young adults are provided the resources to lead valuable, satisfying lives. U.S. Senator Bob Menendez put forth the bill. The AGE-IN Act would fund research, training, and planning for a pilot program for adult transition services. PA Governor Corbett also addressed the long term needs of adults with ASD and developmental disabilities who have aged out of the educational system.

Continue reading

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Anything is possible!

ImageRyan loves running! I remember his first race as little boy wondering “Is it possible for him to finish?” I wasn’t quite sure he’d cross the finish line, but he did, and I was there to greet him as he beamed a smile of accomplishment. And, as he’s grown over the years, we’ve run longer races crossing the finish line together. As I was reading a recent article about Team Hoyt (Dick, 72, and his son, Rick, 50) with a racing career spanning four decades, I was reminded: Anything is possible.

Their stats are impressive. Team Hoyt has competed in more than 1070 races including 247 Triathlons, 22 Duathlons, and 70 Marathons including 30 Boston Marathons. However, what I find truly inspiring is not the number of races, but what Rick typed to his father after the first one: “When I am running, it feels like I am not handicapped.” Continue reading

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July 4th …with a Twist

fireworksI love fireworks! When Ryan was three, I was so excited to take him to his first fireworks display. The first blast erupted spraying the sky in magical colors that glowed in radiant hues and then… Ryan began screaming. We quickly exited and I thought, “Perhaps he is too young.” We tried again the next year, unsuccessfully. I finally “got it” and the following year we watched them, uneventfully, inside the club. As the years passed, we always went indoors before the first display.

For the child with ASD, the day is filled with events that could leave them feeling un-festive without preparation for the big day. I hope the tips I’ve collected along my journey help you prepare for the holiday so that your Fourth of July is full of fun! Continue reading

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