Celebrating Nurses!

Nurses have always played an important role in my life. My grandfather was the first male nurse at St. Vincent Hospital, and went on to become a physician. On the other side of my family, my Aunt Marion (Dr. Barber’s sister) was the Director of Nursing by day at St. Vincent, and at night was the caregiver of neighbors in need on Erie’s East side (then known as “Kingtown.”)

Aunt Marion was certainly a mentor for my late sister JoAnne, who knew that she wanted to be a nurse even as a preteen. To my Dad, a nursing degree meant that JoAnne could not go to St. Mary’s College, but she could go to Georgetown. JoAnne loved being the Litchfield school nurse, and often shared stories of helping children and families.

Nurses

Kathy Babins and Ellen Danowski

And so, as we bring to a close Nurse’s Appreciation Week I’d like to take a moment to recognize the Elizabeth Lee Black School nurses, Ellen Danowski and Kathy Babins. I know that we are fortunate to have such dedicated, caring nurses in our school. Ellie and Kathy can always be counted on to respond to student’s medical needs calmly, with expert nursing care and a smile.

ELBS is unique in that we educate students from 22 school districts, many of whom have multiple, complex disabilities that require special treatments. Sadly, many of our students have seizure disorders, so it’s rare for a day to pass without a “Code Red” – which calls our nurses to a child’s location for emergency treatment. Of course, our nurses complete semi-annual height, weight, and eye assessments along with dental exams, in addition to the numerous demands throughout their day.

The health and safety of our children are paramount. Thus, they constantly communicate with our team, our families and other medical providers to ensure continuity of care. When I asked Ellie and Kathy about their role at the ELBS, they commented:

“Working at the Elizabeth Lee Black School is a very rewarding experience. Everyday, we have the pleasure of working with amazing children. Being able to help the students at ELBS is very satisfying and watching them leave our office with a smile makes it worth coming to work everyday. There is no job that can compare.”

On behalf of our students and faculty, thank you Ellie and Kathy for everything you do to help make dreams come true for our children and their families.

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Mother’s Day Thoughts

Last year, I shared some of Ryan’s touching responses when asked about “his mom.” I reflected on these this past Sunday, and thought they were so sweet that I wanted to share them again.

I hope everyone had a wonderful Mother’s Day!

~ Maureen


5/9/2014

As I was planning my blog for Mother’s Day, I thought, “Why don’t I ask for Ryan’s input?” Last night, while he was having dessert, I asked the question, “Tell me about your mom.” The following are his (unedited) responses:

“You look pImageretty.

You let me do fun things.

You paid for me to go skiing.

You take me out to dinner.

You are nice because you help me and other people a lot.

You take me to movies.

You are kind and merciful because you help me with clothes, made my bed, help kids get bikes at Barber Center.

You taught me to be kind and merciful and the importance of helping God every day by helping others.

You help me out a lot.

You work out with me at LECOM and Build Your Bod and play tennis and golf and bowling.

You taught me how to fold clothes, do things, to cook, be safe.

You made me go to school and I learned there how to get a job.

You helped me learn how to interact with people.

You helped me to learn to do emails by myself and find the internet.

You helped me learn how to behave by helping me understand what I was allowed to do and not allowed.

You went to school a long time so you know a lot of things about school that you could then teach me.

You think that family is important, I get to enjoy them and you taught me they are important too.

You taught me how to work hard and try hard and put my best effort to everything I do.

Happy Mother’s Day, Mom. I love you! You are very important to me. I am very grateful to have you in my life.

Thank you for everything you have done for me. I would not want anyone else to be my mom.”

by Ryan Carey

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Happy Mother’s Day!

mom2

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Mental Health Awareness Month

As May is Mental Health Awareness Month, I thought I would share with you some information about our children’s partial hospitalization program.

The year was 1998 when we recognized that a number of our children have both intellectual disabilities as well as mental health disorders. Our goals were to reduce challenging behaviors through a combination of behavioral treatment, pharmalogical management, and changes in environmental structure.

SONY DSC

We planned to provide functionally-based intensive intervention in the areas of communication, self-help, and social and emotional skills, thereby facilitating age-appropriate interactions. We would also provide parents with information in training in the effective methodologies to minimize the impact of the disorder on the family. We applied and secured our initial license to offer a children’s acute partial hospitalization program, becoming one of the first school-based partial programs in Pennsylvania.

Our program serves students who are enrolled in our approved private school. Following referral and acceptance into the program, a psychiatrist observes the student and consults with staff on a weekly basis. A clinical psychologist and mental health specialists are also part of the classroom team. Every 15 days, the psychiatrist and team members meet with families to update them on the student’s progress as well as to discuss any concerns in the home. When the student has met the treatment goals, a discharge plan is developed with the family to assure the continuity of supports, both in the school and at home.

Photo May 29, 9 47 33 AMHas this program made a difference? Most definitely yes for both our children and our families. In most cases, in-patient treatment is avoided and the children are able to remain at home with their families. Although our numbers are small (only 20 children are served at any given time through MH Partial) the intensity of the services yields very positive results. We plan to continue this component of our approved private school program as long as the need exists.

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National Teacher Day!

NTDThe first week of May is full of moments created to celebrate and appreciate the wonderful people in our lives – teachers, nurses, therapists, paraeducators, behavior specialists and many, many support personnel. This year, National Teacher Appreciation Day is Tuesday, May 5. However, at the Barber National Institute we are recognizing all our staff who work so diligently in our school during “Staff Appreciation Week.”

We agree with First Lady Michelle Obama, who aptly stated: “At a time when more and more jobs require a good education, teacher’s week couldn’t be more important.” A good teacher can change a student’s life, creating worlds of opportunity, shaping the future and inspiring dreams. I think back to a teacher who influenced me and remember Sister Eulalia from Villa Maria grade school. Sister Eulalia was an English scholar who instilled in us the knowledge and importance of good grammar. We spent hours diagramming prayers as a means of understanding subject/verb agreement, the error in dangling participles, and sentence fragments.

Ryan and his 6th grade teacher, Mrs. Newsham.

Ryan and his 6th grade teacher, Mrs. Newsham.

When we entered Sister’s classroom, our knees were shaking and our hands were trembling – we were so nervous that we would make a mistake! However, we survived and today I credit my writing skills to Sister Eulalia.

Of course, I also look back to the teachers who had such a positive impact on Ryan’s learning. The first that comes to mind is Mrs. T, a retired first grade teacher who tutored Ryan from first grade to fifth grade. Mrs. T’s guiding philosophy was that if a student isn’t learning, then we must change how we teach him – a sentiment that echoes throughout the Elizabeth Lee Black School.

Ryan working hard on a science project.

Ryan working hard on a science project.

I encourage you to think back over your education. Who were the shining lights? Who inspired your dreams? It’s never too late to reach out to those people who made an impact in your life to tell them “Thank You!”

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Pronouns and Autism

One of the challenges we faced when Ryan was about 3 years old was pronoun reversal. For example, if I handed him his toy and prompted him with, “Whose toy is this?” Rather than saying “my toy,” he would reply “your toy,” although he meant “my toy.” DOC043015-04302015100234_003Similarly, if I held up an item of my own and asked the same question, he would answer “mine,” meaning “yours.” Essentially, he mixed up his pronouns.

Also, when shown a picture of himself and asked, “Who is this?” Rather than use a pronoun he would speak in the 3rd person, saying, “It’s Ryan.” Little did I know at the time, that this is a classic struggle for some children with autism.

I credit Ryan’s work with Kathy Voght, BNI Speech Therapist, and Stein Lund, at Bancroft Neurohealth in New Jersey with helping him to break through this challenge. Ryan did hundreds of drills designed to reinforce the correct use of the pronoun. Eventually, he “got it.” DOC043015-04302015100234_001

A recent study by linguistics professor Richard Meier at UT Austin, along with colleagues from Boston University, took a closer look at this phenomenon. The study aimed to compare this pronoun reversal between children with autism, and children with autism who are also deaf, in the hopes that they could uncover any possible link between the pronoun confusion and hearing pronouns used aloud. What they found was that “deaf children with autism do not tend to reverse pronouns as hearing children with autism do… However, deaf children with autism did avoid pronouns, preferring to sign names.”

Prior research attributed these pronoun “hiccups” to echolalia – automatic repetition of noises or phrases. But Meier feels that spoken language is not at the root of the issue, rather that “people with autism may differ in their experiences of selfhood.”

Of course, this is a greatly understudied area and much more research is needed. This current study is certainly a good first step in the right direction!

DOC043015-04302015100234_002

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Have You Thanked Your OT Today?

April is Occupational Therapy Month, an opportunity for us to honor the therapists who work with our children in the school setting. Not only do therapists assist students with a variety of hands-on tasks, including handwriting, computer typing, using touch screen technology, they also assist our children in completing activities of daily living (ADL) skills such as zipping coats, fastening buttons, and brushing teeth. Their goal is to facilitate everyday living and functioning.

I took some time to interview our Occupational Therapists, Amanda Richardson, Julie Byham, and COTA/L Karen Kyler about the techniques that they use to help our children and adults reach their goals and become independent in daily activities. I wanted to share some of these techniques that they have found to be most successful.

OTs

  • Sensory Integration Therapy, which focuses on four major components: just-right challenge, adaptive responses, active engagement, and child directive. It works with the child at their pace, and only works when they are actively involved.
  • Backward Chaining is a technique whereby a person learns the last step, masters it, and then moves backwards in the sequencing of a task or activity and concludes with the first step. This helps minimize anxiety and increases confidence in the child.
  • Incorporating music during a therapy session can provide training in balance, bilateral integration, increase body awareness, and may help minimize tactile defensiveness. You may also see increased verbalizations and attempts to sing to music while swinging, bouncing on a therapy ball, or jumping on a trampoline.
  • Maintaining a structure with predictable routines are most effective during a therapy session. One curriculum that has provided great structure for our students is the Teaching Access Ability computer program, a step-by-step approach to introducing students to a touch screen, switch use, and mouse skills.

In summary, OTs look at the child or adult using a holistic, individualized approach, offering techniques for more effective task completion and designing appropriate adaptations when necessary. As one of the ladies commented, “OTs are certainly creative, quick on their feet, with no two days ever the same!”

Ryan has benefited from all of the techniques above, and certainly is a successful young man in part because of his involvement with occupational therapy. Please take a moment and share with me any OT techniques that have benefited your child.

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Summer Camps!

Most people think that when school ends on June 11th, we’re on vacation until the start of the next school year. Not true at the Barber National Institute! We have a number of programs that provide fun, recreational opportunities as well as encourage learning through the summer months.

BNI-elbs-1“Connections” Camp for children and teens with high-functioning autism is one of the favorites. We initiated Connections Camp nine years ago, to help children develop and practice social skills in the most effective ways. This is always a thoroughly enjoyable camp experience, fostering new friendships and a lot of fun. Ryan participated in this program for a number of years. I saw significant improvements in his social interactions with his peers. I would recommend the program to all parents.

The Barber National Institute’s Camp Shamrock is a summer day camp program for children with disabilities between ages 5 and 21. Campers enjoy weekly field trips, access to the BNI pool and gym, and a variety of fun arts & crafts activities.

Happy Hearts Early Childhood Education for preschool aged children also operates all summer, until the start of the new school year. Happy Hearts provides a state-of-the-art educational experience where all preschool children have the opportunity to learn and grow. This fully-inclusive program serves typical children and children with identified developmental delays. Full or part-time enrollment is available based on family preference.

We also offer an Extended School Year Program, for school-aged students 5-21 years old, to allow them to continue to learn through the summer and avoid losing the critical skills they develop during the school year. Each student’s learning experiences integrate a variety of activities throughout the school day, to address their academic, behavioral, and therapeutic needs.

warren bike camp“Learn to Ride” Bike Camp is a four-week program to help children develop skills to ride their bikes independently. Camp will be offered in Erie and in Warren, PA free of charge in summer of 2015, funded by a grant from the Dr. Gertrude A. Barber Foundation. Bike Camp is open to any youngster in the community who is able to pedal but who has not been successful riding without training wheels.

I’m sure you’ll agree with me that it’s never too early to start planning for the summer, even if it’s snowing in April!

Calendar

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“Stuck” Emotions

Ryan and I often talk about being “stuck.” How we define “stuck” is dwelling on a topic of conversation ad nauseum. It may be that the skiing season is over, or that he has “used up” all of his sweet treats for the week, or he can’t wait for his sleepover at Bryant’s. When he was younger, this perseveration could lead to agitation (behavioral incident) unless you acknowledged the topic and entered into a lengthy discussion. Maureen & Ryan with Beast

Fortunately, today if he initiates a perseverative topic, he will often say to me, “I need to get unstuck.” Yes, we have come a very long way in a fairly short period of time. Because of our experiences with being “stuck,” I was really interested to read the blog post by Judy Endow on “Autism and Stuck Emotions.”

Judy does a wonderful job of describing how children and adults with autism have, at times, challenges with being stuck on not only a single thought, but also emotions, feelings and thinking in general. She stresses “that autistic neurological stuckness is not something I decide to be,” and that people not grasping this important concept can result in multiple misunderstandings and complications.

I have an entirely different perspective on Ryan getting “stuck” since I’ve read this article. For those parents, caregivers and educators facing similar challenges, I really encourage you to take a moment to read this blog post – this is a perspective that we don’t often hear from or read, and is very valuable.

Read Judy Endow’s article here: http://bit.ly/1HRpLcd 

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It’s National Volunteer Week!

First BNI Volunteers

As we recognize National Volunteer Week, I think back 63 years ago, to 1952. A group of volunteers, including Gertrude Barber, members of the Erie community and several parents, established the first classroom for children with disabilities in Erie. It’s hard to believe today that a diagnosis of a disability would lead to banishment from public school programs, and a future of institutional placement or living at home with no schooling. These volunteers believed that children with disabilities had a right to an education, and they knew that by working together they could meet the challenges ahead and accomplish the goal of providing an education for children with disabilities.

National Volunteer Week is about inspiring, recognizing and encouraging persons on a local, national or global level to seek out ways to engage in their communities and make the world a better place. We honor those people who are taking the time to actively demonstrate their collective power to make a difference, and hope to motivate others to discover their own power. Through volunteering and community service, everyone can make an extraordinary impact and build a better future for the next generation.

At Barber National Institute, we are so thankful for the incredible volunteers who continue to donate their time to our mission. Volunteers are part of the backbone of our non-profit organization. Special thanks to the following people, who have all generously volunteered for years:

  • Terry RotundaMr and Mrs Claus Visit (1)
  • Judy & Jim Dible
  • Susan Currie
  • Marci Smith
  • Pat Vanzandt Christianson
  • Mary Beth Pinto & Jessie
  • Phyllis Aiello & Shilo
  • Laure Sieber & Charlie
  • Employees of Erie Insurance
  • Dr. Seuss Readers
  • Elizabeth Lee Black School Advisory Board
  • BNI Board of Directors
  • Mr. & Mrs. Santa (Rhonda & Joe Schember)
  • Irene Smerick
  • Vickie Lampe of PNC Financial Services
  • Lisa Slomski of First Niagara
  • Ladies Only Luncheon Planning Committee
  • Jean Theis
  • Dr. Steve Krauza, organizer of the Beast on the Bay

To find a service opportunity near you, visit www.Serve.gov. If you are interested in volunteering at the BNI, check out our website under Careers > Volunteer Opportunities.

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