All About Autism

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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.

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.

Getting 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!

I had the great opportunity to participate with the PNC Advisory Board’s annual Fall meeting last week in Louisville. I so look forward to this meeting each year. The Council members are a diverse group, with representatives from Temple University, Erikson Institute, National Center for Families Learning, Sesame Workshop, Open Minds,  and Fred Rodgers Productions to name only a few. So it will be no surprise that the opportunities for dialogue are many, which is always one of the highlights of the meeting.

This trip, our visit included a tour of the Early Childhood Programs at the Dawson Orman Education Center. While there, members of the Stage One Family Theatre read two stories to 100 preschool children, many of whose parents were also in attendance. It was remarkable to watch how completely engaged with the stories the children were. The actors made an effort to be sure the children actively participated throughout the story telling.

I was not familiar with Stage One prior to this, but afterwards learned that their mission is to expose children at a young age to the arts and inspire creative thinking through live theatre. Their motto is “Learning should never be boring”… and it certainly was not! I only wish that we had a Stage One in Erie for our children.

Following the performance, Sharon Darling, the Founder and Ex. Director of the National Center for Families Learning in Louisville addressed its mission of eradicating poverty through educational solutions. Based in 150 communities across the US, NCFL has a holistic approach centering on the whole community which is the family. A key to the success of NCFL is their core belief that professional development with teachers helps them understand and then implement research-based practices that result in transferring this knowledge to parents. I was thoroughly impressed with the number of parents attending as well as their level of engagement. In the session I observed, not a single parent was on his/her cell phones; rather, all were actively engaged with their child.

Our next stop was a truly amazing visit to the Family Scholar House, a program that serves young mothers and their children. Family Scholar House is committed to ending the cycle of poverty. Its mission is to transform the community by engaging families and encouraging youth to succeed in education to achieve lifelong self-sufficiency. The group has grown at a remarkable rate: from serving four families in 2005 to 3,500 families in 2018. Their CEO, Cathe Dykstra, raises 1.6 million annually to allow for Scholar House to maintain their operation – without federal or state funding and without an endowment. That is such an incredible feat in today’s society!

All in all, I was thoroughly impressed with Louisville, particularly with its commitment to Early Childhood Education and to strengthening the family unit. PNC Foundation and Grow up Great have played major roles in helping to shape Louisville into a community in which people say, “Louisville is the place to live if you have a family!”

Louisville, KY

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share on a monthly basis stories that caught my eye.

Association of Autistic Traits With Depression From Childhood to Age 18 Years

Among 6091 participants in this longitudinal study, children with autism and autistic traits had higher depressive symptom scores than the general population at age 10 years, remaining elevated in an upward trajectory until age 18 years. Social communication impairment was associated with depression at 18 years and was substantially mediated by bullying. This is very interesting as we acknowledge National Bullying Day.

Read the full article here.

More colleges enroll students with intellectual disabilities

In 2004, there were just 25 colleges who offer programs for individuals with intellectual disabilities, according to Think College, a federally funded center that tracks, supports, and advocates for programs. This fall, 270 colleges — including 13 in Pennsylvania and six in New Jersey — will welcome students with intellectual disabilities.

Read the full article here.

Pupillary reflex in infancy may yield clues to autism

The pupils of babies later diagnosed with autism shrink more in response to light than those of their typical peers, according to a new study. The findings may help researchers identify biological pathways involved in autism.

Read the full article here.

Study ties autism to maternal high blood pressure, diabetes

Children born to women who had diabetes or high blood pressure while pregnant are at an increased risk of autism, two new studies suggest. Autism has previously been linked to type 2 diabetes and to gestational diabetes — a temporary condition in which a woman develops diabetes during the course of her pregnancy. One of the new studies confirms these risks and extends the link to type 1, or juvenile, diabetes, the most severe form of the condition. Children born to women with this form have about twice the risk of autism as those born to women who do not have any form of diabetes. The findings appeared 3 July in JAMA.

Read the full article here.

The majority of us have five senses: taste, sight, touch, smell and sound.

But what if you were missing one? Specifically, sound. And you didn’t hear anything or barely anything at all?

This week, September 23 to September 29, is International Deaf Awareness Week.
The Barber National Institute has offered programming for the deaf for over 40 years. In fact, it was one of the first programs Dr. Barber started with the support of the Duchini Family in the 50s. As a college student, I volunteered a summer in our Hearing Impaired classroom, it was my first experience and it couldn’t have been a better one!

Did you know roughly 3 out of every 1,000 children in the US are born with a detectable level of hearing loss in one or both ears, with over 90% of those children born to parents who can hear? And that 95% of babies have a hearing screening before they leave the hospital, but unfortunately not all of the children receive the follow up evaluations that they need to confirm their hearing status? The early identification of children who are born deaf or hard of hearing is critical to ensuring that their families have the resources they need to help their children acquire and achieve age appropriate language skills across all developmental domains.

In 2000, the Early Hearing Detection and Intervention Act passed which established federal funding for newborn hearing screenings in hospitals. Prior to this bill, most children were not diagnosed until two and a half years of age. Could you imagine not being able to hear for the first two years of your life?

Inclusion is key for those with special educational needs to help them grow, thrive and reach educational benchmarks. Today, the Barber National Institute offers a total communication preschool program based on the strengths and needs of our children and their families. We offer this program in an inclusive setting where other typical preschool children are enrolled in the same classroom. At a very early age, these children start to learn how to communicate with other typical children and adults. The unique advantage of this setting is typical children serve as both language and social role models for the children who are deaf or hard of hearing. Conversely, these children help introduce ideas related to acceptance and inclusion regardless of differences to typical children.

For the future, educators need to advocate for the re-authorization of the Early Hearing Detection and Intervention Act, and ensure that all of the deaf and hard of hearing students across the US experience the same kind of language development, social interaction and academic opportunities experienced by their typical hearing peers.

Last week, I had an opportunity to meet with Dr. Boon Hock Lim and his colleague Joseph Lee through our mutual connection, the Richter family.  Years ago, Dr. Lim was a foreign exchange student in Erie and stayed with Mr. and Mrs. Richter.

Although he returned to his native Malaysia after graduating, he maintained his relationship with the Richters. After the birth of his son, who has autism and ID, he became increasingly involved with the special needs population. This drive had a large influence in his eventual founding of the Wings Melaka Early Intervention Center in 1998. So, when he shared of his plans to visit Erie this summer, the Richters immediately suggested that he might be interested in a tour of the Barber National Institute.

They began their visit with a tour led by our training department. We had arranged for approximately an hour-long tour… but they were so engaged that they were gone nearly two hours! Needless to say, he was very impressed with the scope and breadth of our programs.

Likewise, I was very anxious to learn about special education programs in Malaysia and in particular, the story of how he founded Wings Melaka. He and a group of parents of children with special needs wanted to secure services for their children… one year later, Wings Melaka was established.  A school-aged program began in 2007 and their next aim is to offer adult services.

Sound familiar??? Even their mission statement mirrors ours!

Some of their key principles include:

• Family centered model
• Effective early intervention practice
• Positive behavior management focus
• Optimal use of minimal resources

As was true for Dr. Barber in the United States, advocacy by parents was a critical component in securing services for children in need. Today, although there is much regulation about disabilities, there remain limited services available in Malaysia. Dr. Lim’s own son is now 24 and opportunities for him are few. He is hopeful that the parents of the students now graduating will once again lead the charge for more and better services. The similarities between his story and my own with Ryan were again striking.

We said our good-bye with a promise to stay in touch and continue to share resources.

It is only an 18 hour plane trip. Who knows… next stop: Malaysia?

Read Part 1 here

As you might expect, the changes in these numbers and in the number of classrooms required the expansion of our staff. With the addition of new classrooms, we now have 89 classroom staff and 30 therapists, including speech, OT, PT, and behavior. Three quarters of all our staff have at the minimum an associate’s degree – one quarter of these have a master’s degree! This speaks to the consistent trend we have seen is the need to recruit staff who are better educated than generations prior.

We also have several new – or newly renovated – programs for this school year. Our renovations include a “spruced up” cafeteria as well as newly renovated high school restrooms. These restrooms were constructed in 1987 – over 30 years ago! It is safe to say it was time for an update.

Norix table & chairs

The behavior department is introducing behavioral healthcare furniture, Norix, as an increased safety measure. The furniture is built with a soft, rounded plastic and is then filled with sand so it is weighted down and unable to be moved. This is particularly important in classrooms where behavioral issues are a concern.

During our August inservice, percussion artist Jim Donovan held a training session for teachers and therapists for “Drumming Therapy.” Research shows that using musical strategies and rhythms increases attention to tasks, reduces stress, and improves socialization and non-verbal expressions. After our first experience with Jim a year ago, we saw such positive results with our students that we decided to implement the training school-wide.

Now, we already plan to have Jim return to train the paraeducators – this is one of the most requested training sessions we’ve ever had!

We are also continuing our three-year implementation of PBIS – Positive Interventions & Supports. This year begins Year 2, in which we will implement the student matrix. We continue to follow the three main matrix topics of: Be Kind, Be Safe, Be Independent; however, students will achieve these goals differently than staff. We will continue to reinforce the staff matrix simultaneously.

School year 18-19 looks to be even more successful than 17-18!

Welcome to the 2018-2019 School Year! It is hard to believe we are approaching 2019, yet before we know it the leaves will drop and a new season will be upon us. At the start of each school year, I enjoy sharing with our board of directors the changes we’ve seen in the past year, from statistics of our staff and student populations to the new or improved components of our programming. Hearing how much our board enjoys learning of this, I thought perhaps my readers would find it equally as interesting!

As of this year, we currently serve 24 school districts in the region – the largest number we have seen to-date. Our most recent addition was Valley Grove from Franklin, PA. It is always extraordinary to me to consider how far some of our students travel to be able to receive the educational services at the Barber National Institute. It is also a great reminder to be grateful for what resources we have so easily accessible.

By far one of the most interesting statistics I’ve reviewed over the years is the change in our student population by disability. As current conventional research would indicate, the most prominent change we have seen is the rise in students with an autism diagnosis. The age range of our students also continues to expand; we have a much larger population of middle and secondary students compared to a decade ago. We also currently have 17 early intervention students; 17 inclusive preschoolers; 33 specialized preschoolers; and 18 Happy Hearts students.

Tune in next week when I share some of the exciting developments we’re introducing into our programs this Fall!

I recently heard a Back-to-School ad play on the TV and immediately thought, “Can it be time for this already?” I can still recall how I felt as July turned into August and we began the back-to-school countdown. Ryan was always very anxious (and I was, too) so I learned over the years how I could help the both of us control our worry. Perhaps some of my ideas might help you and your child.

• If your child is entering a new school, it is helpful to set up times prior to the start of school for your child to walk through the school building and locate his or her classroom. When Ryan was transitioning to Walnut Creek Middle School, we walked through the school and located his classroom, locker, restrooms, etc. to allay his anxiety about being in a new school. We even had an album of photos of the staff with whom he would interact.
• Schedule an appointment with the principal to allow all of you to meet and informally talk about the upcoming year. The Principal and the Walnut Creek Middle School team went to great lengths to assure a successful start for Ryan. I credit the outstanding staff for the success Ryan experienced at Walnut Creek.
• Similarly, request a team meeting prior to the start of school. I would suggest that all the teachers who would interact with your child attend. I felt it important that not only Ryan’s classroom teacher but the ancillary staff were acquainted with Ryan and the work he was capable of doing. I provided a packet of information about autism and how it might impact his school performance.
• However, the most important component was creating a handout describing what teaching methods and behavioral strategies were most successful with him. I made sure that the team understood the importance of setting the bar high by including a sample of his best work as well as his efforts when he lacked interest in the work he was doing. I wanted to make sure they knew that he would work to the level that was expected of him. 
• Count down the days to the start of school so that your child is prepared for the transition from summer fun to school days. If you changed his or her bedtime and morning routines for the summer, readjust them a week ahead of time so that your child gets used to getting up early and starting the day in a structured way.
• Remember, it’s also important for you to remain positive and calm. Ryan could always sense my anxiety, which in turn made him become more anxious.

I always welcome additional input from parents on what’s worked for your family as well.

On another note, as some of you may know I particularly enjoy Maria Shriver’s concept of taking the month of August to step away from social media, blogging, and the digital world (as much as possible). I will resume my blogging in September! May you have a smooth and blessed start to the school year!

Today, as I read Maria Shriver’s Sunday essay on unity, inclusion, and the Special Olympics turning 50, I could not help but think about my aunt, Gertrude Barber.

Her life has so many parallels to Eunice Kennedy and her endeavor to begin the Special Olympics.  Maria writes, “the Special Olympics are about family, the respect of the individual, the power of voluntarism, and the strength of the community.”

Sound familiar?

Dr. Barber began her mission in 1952 because she was unwilling to tell parents that their child could not go to school because of their disability. At that time, their only recourse was to send the child to an institution or keep the child home.

But Dr. Barber had a vision of what these children needed in order for them to reach their potential. So, she and her volunteers began the first classes in Erie County and from that point on, there was no stopping her. The Erie community quickly fell into step behind this mission. Next came Adult Services, Residential services, Family Support; locations in Philadelphia and Pittsburgh… and the list continues to grow.

As a child, I remember going to a “day camp” that she offered at Turnwald. Although I did not know it as a 10 year old, she wanted children with special needs to have an inclusive opportunity. Only later did I realize the strong similarity to Eunice Kennedy’s humble beginning of the Special Olympics: a summer camp at her home for children with special needs, at which she engaged her children to participate as well.

Thinking about where we are today, I am pleased to see the many areas where our commitment to provide each child and adult with every opportunity to be the best they can be remains as strong as it did nearly 70 years ago. Although our dreams and visions evolve with time, the heart of our mission remains strong with these core beliefs…and continues forward!