Birthday Bliss

Ryan turned 25 Sunday, December 2nd!

As I write those words, I find it difficult to believe that 25 years have passed.

It was just yesterday…..

Ryan's Graduation Picture 2013Ryan was 4 months and starting Happy Hearts, the Barber Center child care program located down the street from our main building. Its close proximity provided me the opportunity to visit during lunch and check in on him. And then he celebrated his first birthday with a “party” with his fellow classmates.

Soon after his diagnosis at 2, we were implementing an ABA program mornings, afternoons, and weekends.  He was a busy young man!!!! And so was I. It was “hard work,” but I do attribute much of his success to the intensity of the program in his very early years. He loved visiting his Aunt Tootie (Dr. Barber), sitting on her couch, and eating the special crackers she kept just for him.

From elementary through middle school, he was fortunate to have some strong administrators (especially Mrs. Mosely) and caring teachers who challenged him to be the best he could be. By the time he was in high school, he was ready to say goodbye to school and move into the world of work. He volunteered at Bello’s Market as a Junior and Senior, and was offered a job there upon graduation. He continues to work there Monday, Tuesday, and Thursday mornings, completing their maintenance needs. He works with our Transitional Work Service program in maintenance Monday through Friday afternoons. He loves working! He has probably the best work ethic of any young person that I know.

Another facet of Ryan is his interest in and commitment to fitness. He participated in the kid’s marathon at age nine, skis and loves the outdoors. Today, he works out at LECOM twice a day, by swimming, running, lifting weights, and golfing. I must say it is hard to keep up with him! He completed the Barber Beast on the Bay for the 4th year in a row, and was smiling as he crossed the finish line, after running 10 miles!

As I look back over the years, I know that I have so much to be grateful for: family, friends, outstanding staff, and the Erie community that welcomes children with disabilities.

And the future??? My expectations continue to be high and who knows what the future will bring. He has accomplished much more than I ever would have dreamed!

Tune in next year and I’ll fill you in on what Ryan’s 25th year held!

 

Advertisements
Posted in Uncategorized | 1 Comment

Assistive Technology

As I was reading Governor Wolf’s proclamation of November as Assistive Technology month, I thought about the significant difference it has made in the lives of children and adults with disabilities. In general, assistive technology itself is an umbrella term that includes any adaptive or rehabilitative device which allows a person to perform activities of daily living.

There are lots of examples of both high tech devices, i.e., eye gaze technology and “low tech” communication books. In the school setting, I think of assistive technology as any device that allows the student to be successful. Prior to the start of the school year, our team, consisting of a speech therapist, physical therapist, occupational therapist, tech coordinator, and supervisor, meet and review the students in each class and determine their assistive technology needs. Communication devices, iPads, device mounts, are all part of this discussion.AT

This is an evolving discussion as needs change and students accomplish goals through year. What is even more amazing is how technology is so quickly developing …all for the better!  Who would have guessed a day where we use virtual reality devices instead of taking field trips!

I, too, have seen how Ryan has accesses assistive technology over the years. Lots of low tech, audio readers, timers, calculators, FM listening devices, graphic organizers and iPads are a few of the assistive devices that have helped him. He thoroughly enjoys sending emails to his friends and lately has found texting is a great way to communicate without engaging in a full conversation.

So what does the magic ball hold for us in the future? I would not even take a guess but whatever helps our children and adults, I am all for it!

Posted in Uncategorized | Leave a comment

Expressing Gratitude this Thanksgiving

As I’m sure is the case for many of you, this time of year always makes me stop and think a little longer about what I’m thankful for. I’ll share a few of my thoughts with you – please feel free to add on!

I am grateful for:

  • The creative, committed, enthusiastic, loyal staff members who work with our children, adults, and their families
  • An organization that is always striving to improve the lives of children and adults with disabilities through the latest technology, research, programming, and training
  • The children and adults themselves, who remind me every day that life is precious, and that each of us is given our challenges, but also have gifts to offer.
  • A supportive family, through good times and bad
  • A community that comes together to show support for multiple causes
  • Good health
  • A son who has taught me much and helped me to grow in numerous ways
  • A country founded on the values of freedom and liberty for all

Happy Thanksgiving to all!

 

gratitude present

Posted in Uncategorized | Leave a comment

Thanksgiving Gratitude!

As I’m sure is the case for many of you, this time of year always makes me stop and think a little longer about what I’m thankful for. I’ll share a few of my thoughts with you – please feel free to add on!

I am grateful for:

  • The creative, committed, enthusiastic, loyal staff members who work with our children, adults, and their families
  • An organization that is always striving to improve the lives of children and adults with disabilities through the latest technology, research, programming, and training
  • The children and adults themselves, who remind me every day that life is precious, and that each of us is given our challenges, but also have gifts to offer.
  • A supportive family, through good times and bad
  • A community that comes together to show support for multiple causes
  • Good health
  • A son who has taught me much and helped me to grow in numerous ways
  • A country founded on the values of freedom and liberty for all

Happy Thanksgiving to all!gratitude present

Posted in Uncategorized | Leave a comment

SEL: What’s That?!

There are so many buzz words in education… IEP (Individual Education Plan); STEM (science, technology, Engineering, math). Now, we have a new one to add to our lexicon: SEL (Social Emotional Learning).

SELToo often we focus on scores and grades as the basis of students’ academic achievement and overall success. I can certainly remember being at Villa Maria grade school and boasting about how many As I had on my report card – something we all did! At that time, none of us stopped to think or discuss the “other side” of learning.

However, today we are hearing that with our emphasis on academics, social emotional learning is being left by the wayside. So what is being lost? I would suggest that Social Emotional skills are those that enable us to get along with our peers, cooperate with others, manage our emotions, and persist at challenging tasks.

This got me thinking: aren’t those the skills we need to be successful in the world of work? This takes on even greater significance when we consider that many children living in poverty show delays in not only academic development but also social emotional development when they enter kindergarten.

So, at the age of 5, these children have serious challenges to overcome for them to be successful in school. What might be some of the answers?

  • Quality preschool education for all children would be a great beginning
  • Include social emotional learning along with our academic programs
  • Actively engage parents in the process

Our children are our future. Let’s invest in them now!

Posted in Uncategorized | Leave a comment

Down Syndrome Awareness Month

In honor of Down Syndrome Awareness month, I asked good friend Rhonda Schember if she would be willing to say a few words for my blog. Rhonda is, in her own words: 
former Home Economist and food columnist
Mother of Jaime, and twins, Joe & Jodi
Co-founder of the first Down syndrome parent group in Erie
Current President of The Arc of Erie
Longtime volunteer in Human Services
Married to a guy named Joe, who happens to be the Mayor of Erie!
I was very moved by her blog this month, and I hope you will enjoy it as well! 
~Maureen

Every year, during the month of October, we recognize in special ways those born with Down syndrome. Proclamations are written, walks are held, dances are scheduled and, for a few short weeks, media sources bring attention to the most commonly diagnosed genetic anomaly in the United States.

Today, from a grinning Gerber baby to a giant Jumbo-tron montage in Times Square, a child with Down syndrome is embraced and celebrated.

Statistically, 1 in 700 babies born every year in this country has Down syndrome. But, unless they are identical twins, no two are the same. They aren’t all giggly, huggy, chubby reincarnations from a single mold. Each and every one is unique with special talents and skills.

A few months ago, while attending an event on the Bayfront, I noticed a handsome young boy walking hand-in-hand with his Dad. He was dressed in a sport jacket and bright bowtie and was obviously having a great time. When I realized he had Down syndrome, I was immediately drawn to him.

Admittedly, I was jealous. I could not bring my daughter to such an event because she couldn’t handle the crowd, the closeness or even the noise of a boat horn. But a tap on the shoulder quickly brought me back to reality – I actually met this young man when he was just an infant! His Mom stopped to reintroduce herself…and quickly pointed out his twin sister across the room.

Long before Facebook and Instagram and Snapchat, parents met through word-of-mouth and phone referrals. As the parent of similar twins, I had visited this Mom to welcome her to our unique club and provide congratulations, advice and support.

Today, times are different. That “personal” connection is usually a computer screen with answers to a myriad of new-parent questions only a click away. You’ll still find lots of cookie-cutter responses like the first one I ever heard on a hospital hotline: “There is no cure!”

Thankfully, times have changed and most doctors and parents are better informed today. Books have been written, television shows produced and many of the myths surrounding our children have been debunked.

But, if you truly want to understand what makes each child with Down syndrome unique – ask a parent, or two or three. I guarantee each response will be funny, sensitive, loving and different. Of course, if you’re lucky enough to meet the parents of twins like mine – expect the stories to multiply, exponentially!

The next time you’re on the internet, visit The Arc of Erie and Lake Erie Area Disability Supports (LEADS) pages on Facebook.  Both provide a direct connection to programs and activities for parents and families in the Erie area. And, if you look soon, you’ll get a glimpse of our new 2019 calendar of smiling faces!

At the end of the day, whether a child is a red-head or brunette, has blue eyes or brown, short fingers or long, clear speech or none at all…it doesn’t really matter.  What IS important is that each and every child is loved.

Posted in Uncategorized | Leave a comment

Celebrating Employment

Each October, we at the Barber National Institute celebrate National Disability Employment Awareness month by honoring our employees and our partners in the community with a luncheon.

disabilityawarenessmonth.jpgGetting a job is something of an inevitability for most of us; even on the board game “The Game of Life,” choosing your career is not a milestone you can skip. As parents, most of us begin asking our children at a very young age, “What do you want to be when you grow up?” I can certainly recall that time in my life… as well how this question – and more importantly, the answer – changed after I had Ryan.

Yes, I’ve always had, and continue to have dreams for Ryan. However, rather than keep a narrow focus on a particular career, my hopes for Ryan’s future were instead that I wish for him to be the best that he can possibly be. That certainly could include employment, but the unfortunate reality is that persons with disabilities still face great disadvantages when seeking a job.

In fact, National Disability Employment Awareness Month was established 70 years ago to help bring light to the issue that many persons with disabilities were excluded from the work force. Decades later, still only 18% of persons with disabilities are employed in the work force.

So what can you do? Help us celebrate the talents and skills of persons with disabilities by becoming a participating business yourself! McDonald’s, Ember+Forge Coffee Shop, LECOM, Grape Vine Laundry, Bayfront Convention Center, Erie Insurance Arena, Art’s Bakery, Plastek Group, Odis 12,  McQuillen Dealership, Triangle Tool, PHB Inc. are only a small sampling of the over 55 businesses with whom we are currently working locally. If you own a business, give us the opportunity to talk with you about how we might work together. If you are not, consider asking some of your friends and colleagues if they would be interested in working with us. It is, without doubt, a WIN/WIN situation: the person with a disability secures employment and the business gets an employee who is dedicated to the job, has a great work ethic, and desires to be a long-term employee.

Ryan is happily employed part-time doing maintenance work at Bello’s Super market and part-time at the Institute doing similar tasks. He loves both jobs and has told me that he plans to stay in the same jobs until he retires. I know there are countless others who are and would be as devoted as he!

Posted in Uncategorized | Leave a comment