All About Autism

As we as a community and a nation prepare to mark World Autism Day on Monday, I think back to when my now 23-year-old son, Ryan, was first diagnosed with autism. One of the things that I distinctly remember was a comment I heard many times: “But he looks fine!”

Although well-intentioned, many people in those days assumed that any mental disability would be easily identifiable and quite evident. With autism, that is certainly not the case. In many ways, the years that have passed since then have taken us further than I ever could have imagined, both in the cultural acceptance of people with autism as well as in researching all aspects of this spectrum disorder.

Over the past decade or so, the U.S. Centers for Disease Control and Prevention reported that the number of children diagnosed with autism increased 10 to 17 percent annually. So it was notable that in 2016, for the first time since data has been collected, the reported rate of autism has remained steady. This still means that one in 68 children is being diagnosed with autism every year, and that hundreds of thousands of parents are searching for treatments and therapies that will help their children learn to communicate, manage behaviors and improve other symptoms of autism. While there is yet no “cure,” advancements in science, technology and behavior therapy have enabled us to dig deeper into the causes of autism and bring new hope for more effective treatments.

Since autism has its roots in early brain development, the focus of most research begins, naturally, in the brain. Recent findings reveal that, by observing how fast a child’s brain grows in the first 12 months, not only are scientists able to predict whether a child will be diagnosed with autism but they can also determine how severe their symptoms are likely to be. Biomarkers such as these will have enormous potential for earlier diagnosis and intervention.

The other important area of research is being conducted with genetics. Scientists have known that genetics play a role in autism for decades, dating back to a study in 1977 that revealed identical twins often share the condition. But the more researchers uncover about DNA, the more complex its contributions to autism seem to be. Although there is no single “autism” gene, studies conducted over the years have identified several genes that are considered to be strongly linked to autism spectrum disorder. The latest genetic study has generated much excitement over a specific gene, TAOK2, which many researchers believe plays a direct role in neurodevelopmental disorders such as autism.

Other signifiers, such as the role of the cerebellum in processing social cues and interactions, focus on brain regions and overall brain activity. These findings enable doctors to better predict patient outcome and determine potential new treatments and targeted medications. In late January, the Swiss drug-maker Roche announced that the U.S. Food and Drug Administration had given “breakthrough therapy” designation to Balovaptan, a drug to treat symptoms of autism. Currently, there are no standard FDA-approved drugs for autism that treat core symptoms such as social interaction and communication challenges. Balovaptan has shown the potential to improve these symptoms, and this designation means that the drug can move more quickly toward full FDA approval, undoubtedly a positive advancement in the field.

Of course, increased awareness and acceptance have also aided in the number of early intervention programs accessible to families. Recent studies have suggested that autism symptoms decrease when parents provide behavioral therapy to their high-risk babies. Moreover, research confirms that these gains are sustained as the child grows.

As exciting as these findings are, they are only a small handful of the hundreds of studies that are being conducted and published regarding autism research. Each new breakthrough reminds me of just how far we’ve come, and gives me encouragement for what the future may hold. As a mother and a professional working in this field, I keep in mind the advice of author and teacher Vernon Howard when he said, “Always walk through life as if you have something new to learn, and you will.”

This article was originally published on Goerie.com: http://www.goerie.com/opinion/20180329/science-raises-hopes-for-autism-breakthroughs-maureen-barber-carey

If you have ever worked in special education, there is a good chance you have witnessed repetitive behaviors. For those who may not be familiar with the concept, a repetitive behavior is nearly any activity that can be done over and over, such as waving of hands in front of you, lining up objects in a singular manner, crossing fingers, vocal tics… the possibilities are truly endless.

There is a lot of discussion surrounding repetitive behaviors. Some believe that if the action is not harming the child, why stop him from doing it? It is simply a behavior associated with autism. Others argue that repetitive behaviors make the child stand out from his typical peers, and may also interfere with learning, as these behaviors can at times become so intensive the child will shut out everything else. There are also instances where a child may be so focused on the behavior that when he must move on, a behavioral outburst happens.

Still, there is research to suggest that repetitive behaviors make the individual feel calm and relaxed. There are even testimonial videos of individuals with autism who share that, in a world where they may not always feel that they have control, they enjoy the feeling of control that results from a repetitive behavior.

As you can even tell from the differing perspectives above, there is no single answer as to whether repetitive behaviors are positive or negative.

For those of you who may be working through this question currently, I would suggest that you collect data on the behavior and observe when and why it occurs. This will provide you with the “best guess” as to why your child participates in a repetitive behavior. If you do determine that the repetitive behavior has a positive impact, you will next want to identify the situation(s) in which you will allow the behavior to occur and for how long.

In our house, Ryan’s repetitive behavior is hand/finger wringing. When I have asked him about it, he has said that it makes him feel calm. Certainly, any calming effect is welcome for Ryan as he struggles with anxiety. Often, the gesture is small enough that it isn’t an interruption of his day-to-day activities. However, in certain social situations I have encouraged him to put his hands in his pockets to draw less attention to his hands.

There have been other repetitive behaviors that have come and gone over the years. Some I’ve ignored, others we’ve worked to eliminate. It’s always a work in progress! As always, I welcome sharing of any tried and true tips from your house!

If you see happen to see a number of people wearing wild socks today, don’t worry: these people didn’t have a laundry crisis, they are simply celebrating World Down Syndrome Day!

WDSD, celebrated each year on March 21^st, is a day designated to promote awareness and understanding for individuals and families with Down syndrome. The message behind the socks is to convey that things that are different can still be fun, wonderful, and beautiful. Those that are wearing an extra pair may be taking the message a step further, by representing the extra copy of chromosome 21 that is present in individuals with Down syndrome.

Other interesting facts about Down syndrome:

• There are three types of Down syndrome: trisonomy accounts for 95% of cases; translocation for about 4%; and mosaicism for about 1%
• Down syndrome is the most commonly occurring genetic condition. Between 1979 – 2003, about 30% of all babies born were born with Down syndrome
• One in every 691 babies in the United States is born with Down syndrome – that equates to approximately 6,000 births annually
• Currently, there are just over 250,000 individuals with Down syndrome living in the United States
• Most individuals with Down syndrome have mild to moderate cognitive delays; however, many will participate fully in public and private educational and community programs.

Look for #lotsofsocks trending on social media to see fun socks around the world!

Did you know that brain injury is the leading cause of death and disability in children and young adults? I certainly did not, and was shocked to learn this.

As part of Brain Injury Awareness month, a PA organization called BrainSTEPS has shared a number of statistics, myth v. fact comparisons, and helpful resources for parents, caregivers and school support staff.

BrainSTEPS was founded in 2007 by the PA Department of Health to address the cognitive, physical, socio-emotional and behavioral impairments that can impact a student’s performance following an acquired brain injury (ABI). Just last year, the CDC recognized BrainSTEPS as a national model for educational consultation supporting students and school teams.

• Every 9 seconds, someone in the United States sustains a brain injury.
• Approximately 22,000 children and adolescents ages 0-21 years sustain concussions each year.
• More than 3.5 million children and adults sustain an ABI annually.
• One of the least common symptoms of concussions is loss of consciousness.
• One of every 60 people in the United States lives with a brain-injury related disability.

BNI staff person Cindy Priester, OT/R, MS, serves as a member of the local BrainSTEPS team.

For more information about traumatic brain injury and resources to help a child return to school following injury, visit Getschooledonconcussions.com.

In the aftermath of the tragic Parkland, FL incident, it seems that whenever you turn on your TV the news is always covering some aspect of the incident; whether it is asking “Could this have been prevented?” to how to make schools safe. No matter how much we try to censor, our children are hearing this conversation daily. They are coming to us and expressing their worries about safety while attending school. What can we as parents do to help our children through these frightening times? Below are some tips to help you talk to your child:

Pay Attention, not just to what your child is saying but also what they do. Some children may come to you and ask to talk about it. Others may engage in drawing, or imaginative play, to share their feelings. So much depends upon the individual child and how he expresses himself. For example, if your child shy and timid, his anxiety may be expressed in seemingly unrelated ways.

Reiterate their safety. It is essential to reinforce the idea that regardless of where your child may be during the day, school or at home, there are always adults present who have a plan to keep them safe. Talk to them about many, many steps that are taken to ensure that they are safe at school.

Let their questions be your guide. Encourage open conversation and allow them to speak freely about their worries. Be prepared to answer all kinds of questions, and try to think through your responses prior to talking to them. Depending on your child’s age, your answers will vary greatly.

Take a break from the media… as best as you can. While it is wise to censor it at home, your child probably is seeing and hearing about the tragedy through social media. Still, you can and should encourage your child to take a break from the ongoing deluge of information surrounding the incident.

These tips are applicable for all children, regardless of age or ability. In our home, in the wake of the tragedy I have simply turned off the TV. We listen to the Weather Channel, but that’s it. The unfolding of the Parkland tragedy caused such anxiety and worry for Ryan that he didn’t feel safe leaving the house. We have had many conversations, with him asking many questions about what happened and why it happened and will it happen in Erie. We have revisited the plan of what he should do if he feels unsafe, which helps a great deal in making Ryan feel safe and in control. I can only pray that it will be a long time before we need to address this again!

I am an avid follower of Maria Shriver’s Sunday newsletter, so I was thrilled to hear that she was writing a book, “I’ve Been Thinking: Reflections, Prayers and Mediations on a Meaningful Life.”  I learned that she was going to make available to some of her followers an early edition of the book so that we might read, share our thoughts and comment on social media. I answered some questions, submitted my application with little assurance that I might be selected…but to my great surprise, I was!

This book has challenged and inspired me to truly consider what a meaningful life is for me, and given me the building blocks to work towards one.  I now find myself choosing to live in the present, not regretting the past nor worrying about the future. Without her inspirational and motivational words, I am not sure if I would have begun this journey.

I am also beginning to see the role faith plays in a meaningful life; as the root of fortitude, it brings calmness and stability to an often unpredictable and even at times chaotic life.

One of the chapters that was most inspiring to me was “The Power of Gratitude.” I learned that making a daily, conscious effort to be grateful makes you happier and more hopeful. Gratitude reduces the output of stress hormones, primarily cortisol, during challenges and crises. Gratitude also strengthens social bonds and fosters feelings of love. For some, gratitude comes naturally, but for others, a daily gratitude practice is needed.

When I wake up in the morning, one of my first thoughts is: “What am I grateful for?” Each day is different, but it usually centers around health, family, faith, and the work I do. I am finding this a great positive way to begin my day.

So, I thought to myself: Ryan needs to have a daily gratitude practice. For him, waking up would not be the best time, so we decided to have our gratitude practice during breakfast. I initially explained to him why this was going to be one of our daily habits and that, instead of giving up something for Lent, we would be doing this. It was a little rough from the start but as he began to see how much he had to be thankful for, I could see that he enjoyed it more.

Our plan is to continue beyond Lent and have this as one of our morning routines. I think that a gratitude practice is an invaluable tool for both children and adults. Try it out and see what you think!

Tomorrow is Digital Learning Day, an event that we have been celebrating at the Barber National Institute for the past five years. One of the main reasons we so look forward to this day is that it offers us a chance to show the community the many ways that we integrate technology into the culture of our school. By incorporating it in the therapies and lessons our students regularly engage in, students use technology to achieve their IEP goals as well as to enhance communication with their peers, staff, and families.

We have made great strides over the last decade to become a fully technologically integrated school. At the start of each school year, teachers and therapists meet to discuss each student’s technology needs. As we always have an eye towards the future, we also conduct periodic needs assessments for the school as a whole to determine what latest tech we might wish to bring on. Digital fluency is much more than simply knowing how to use a particular app or device. It’s a general mindset that technology can open doors for our students that were formerly closed.

So what does this actually look like in the classroom? Here are some of the ways that we infuse tech into our classroom culture.

Take advantage of the wide variety of augmentative and alternative communication (AAC) devices. Our students use many forms of AAC, ranging from low-tech to high-tech systems. These devices have provided our students and families communication opportunities and interactions that no one knew were possible!

Incorporate devices into your lesson planning. Using devices such as the iPad can enhance many aspects of instruction and offer some flexibility for the teacher to circulate and give one-on-one support or create small groups.

Consider exploring online-only curriculums. It is no longer a world of simply textbooks – we utilize many online curriculums, such as News2You.

Start texting. No, seriously! Our school is implementing an opt-in texting system between teachers and parents that allows classrooms to share bits of news ranging from a theme of the week to helpful reminders. The feedback on this has been nothing but positive and really helps to keep parents engaged.

If you would like to learn more about technology at the Barber National Institute, I encourage you to join us tomorrow, Thursday February 22, from 11 AM to 1 PM. Held in the gym, we will have a variety of stations set up to encourage fun interactive learning experiences. Plus, you will have the chance to win some free tech goodies! Reservations are not required, just stop by!

Dr. Joseph Barber, MD., recently wrote a letter to the editor in the Erie Times News about the unfortunate fact that being overweight is a stigma in an increasing number of children. Obesity rates for children with disabilities are nearly 40% higher than for children without disabilities. The rates for adults are frightening: approximately 60% higher than for adults without disabilities. Reasons for this can vary; they include:

• A lack of healthy food choices and/or dietary restrictions
• Medications that can contribute to weight gain
• Physical limitations that reduce a person’s ability to exercise
• Lack of accessible environments that enable exercise

With obesity comes other health problems, including asthma and migraine headaches. In children with ASD who were obese, other health issues that were associated include anxiety, depression, and sleep problems. As Dr. Barber points out, obese children often miss more school and underachieve academically compared to average weight peers.

Peers, parents, and family members can contribute to stigmatization; for example, teachers may establish lower expectations for obese children. Of course, in today’s social media-saturated world, many negative associations can further increase feelings of depression, negative self-esteem, binge eating and social isolation.

What can we do? We must be positive supports in the lives of anyone, with or without disabilities, who struggles with obesity and encourage others to do so as well.

Did you know that today is World Read Aloud day? It is a day that is dedicated to celebrating literacy as a fundamental human right. On this day, people around the globe celebrate by coming together to read aloud and share stories, whether that is in the home, the classroom, or out in the community.

I started reading aloud to Ryan when he was a newborn. Goodnight, Moon, How Much Do I Love You?, and Is Your Mama A Llama? were just some of our favorites. This practice continued through his preschool years… until he began reading aloud to me!

Here are some reasons why reading aloud is so beneficial and important:

• Reading aloud to children every day puts them almost a year ahead of children who are not read to
• 750 million adults around the world lack basic reading and writing skills
• Nearly 85% of the juveniles who face trial in the juvenile court system are functionally illiterate, illustrating the close relationship between illiteracy and crime. More than 60% of all inmates are functionally illiterate.
• Low literacy rates cost $74 million annually in direct health care costs
• 1 in 4 children in America grow up without learning how to read

Literacy is a skill that you can acquire at any age. One of our students in our Adult Basic Education program is 75 years old  – and he just learned to read!

At the Elizabeth Lee Black School, we are celebrating World Read Aloud day in a number of ways, including having parents join their Early Education students to collectively read a story in the gym; having our adult students read to some of our middle schoolers; and our high school aged students reading to individuals at our Senior Center.

How will you “Read Aloud” today?

2017 was a significant year for special education law. The two most important legal developments were rulings on the meaning of Free Appropriate Education (FAPE) and the scope of the IDEA exhaustion requirement (the first two listed below, respectively).

I anticipate that we may see more challenges to school districts based upon the Endrew decision, in particular. I very briefly summarized ten of the most significant legal findings of the year below.

• Progress, IEP must be “appropriate” in light of child’s circumstances

Rather than adapting a rule for determining the substantive adequacy of any given IEP, the Supreme Court ruled that the program must be “appropriately ambitious,” meaning that programs must sufficiently challenge a student regardless of disability.

ENDREW  V. DOUGLAS

• Exhaustion not necessary for claims unrelated to provision of FAPE

The Supreme Court unanimously held that IDEA’s exhaustion of administrative remedies requirement only applies when the substance of a parent complaint is a denial of FAPE. Parents cannot bypass the IDEA’s administrative procedures by simply omitting certain terminology from their complaints.

FRY V. NAPOLEON

• District has no obligation to address child’s religious or cultural needs

IDEA

does not require an IEP to address the religious and cultural needs of a child with a disability, even when those needs go to the core of his identity. A district fulfills its duty to provide FAPE if it develops an IEP that meets the child’s secular educational needs.

M.L. V. SMITH

• Reference to methodology in PWN doesn’t modify terms of student’s IEP

PWN (Prior Written Notice) is a proposal for program implementation that is not binding on the school district, meaning districts can make recommendations without the court interpreting them as being part of the IEP.

M V. FALMOUTH

• IDEA’s statute of limitations only applies to the filing of a complaint

Parents can seek relief for IDEA violations that occurred more than two years before the filing date, provided they file a complaint within two years of discovering the district’s alleged wrongdoing.

AVILA V. SPOKANE

• “Clear consensus” of evaluative data undercuts offer of 6:1 placement

This ruling does not require IEP teams to adopt all recommendations by outside evaluators; rather, it shows that an IEP team cannot disregard a “clear consensus” of evaluative materials showing that a child needs a particular service, methodology, or placement to receive FAPE.

A.M. V. NYC DEPT OF EDU

• Unilateral IEP amendment impedes CA mom’ ability to monitor services

A parent’s right to meaningful participation does not end when the IEP document is signed; she/he also has a right to monitor and enforce the provision of special education services.

M.C. V. ANTELOPE VALLEY

• Reimbursement award can’t predate district’s obligation to provide FAPE

A court may not award reimbursement for private services a student with a disability received before the district had a duty to provide the student FAPE. Once the district violates that duty, though, it may have to pay for any private services for the student afterward.

DALLAS INDEP V. WOODY

• Stay-put reimbursement order turns parents into prevailing parties

If parents have to sue a district to compel the provision of stay-put services, the district will likely have to pay any legal expenses related to that enforcement action.

M.R. & J.R. V. RIDLEY

• Child’s IEP must address transition between private, public school settings

Nothing in the IDEA expressly requires an IEP to include a plan for transitioning a child with a disability from one type of environment to another; however, an IEP team would be well-advised to consider whether a child requires such services to make progress towards his/her annual goals.

R.E.B. V. HI DEPT OF EDU