All About Autism

Ryan and I have been talking about how we are going to participate in the #RAK16. We decided that every day, each of us will do a special act of kindness and at the end of the day share with each other what we did. In fact, this morning I witnessed a random act of kindness… for Ryan. He was running on the track at the gym, and his shoelaces had come loose. He asked a woman jogging by him if she would tie his shoes very tight for him. She stopped in the middle of her workout to do so. Moments like that are so touching!

As I thought about the topic of kindness, I began to consider how kindness is taught. The rampant problem of bullying in our schools underlies a deeper issue – are we teaching our children to be kind?

According to a recent study, about 80% of interviewed youth said their parents were more concerned with their achievement or happiness than whether they cared for others. The interviewees were also three times more likely to agree that “My parents are prouder if I get good grades in my classes than if I’m a caring community member in class and school.”

I think we can all agree that that’s not good. So the question becomes, “What do we need to do differently?”

It’s never too early for children to hear from parents that caring for others is a top priority. A big part of that is holding children to high moral standards, such as honoring their commitments. I recall how as a youngster I signed up to play tennis, only to find that it wasn’t the right sport for me. However, my parents insisted that I continue for the season, as I had made a commitment to the team to play.

Learning to be caring is like learning anything else: it takes practice. Lots of it. This begins with the parents. Children need to hear their parents address each other as well as others in a respectful manner. This can be as simple as being polite to the waiter taking your order. Make sure your child understands that there is never an acceptable time to be rude to another person.

It’s easy to foster a caring attitude toward family and friends, but it can be more challenging to teach a child how to extend that to an unfamiliar person. Even though technology makes it appear that we are more connected than ever, the reality can be that there is a disconnect behind the computer screen. While the internet is a great platform to learn more about our globe and its challenges, it’s important to take this to the next level. I have always encouraged Ryan to learn more about and be open to different cultures and communities other than his own, but also to ask, “What can I do to help these people in need?”

Parents are a child’s first teacher. We have an important role to play as a mentor and role model. Even when you’re not aware, your child is observing you and seeing how you manage problematic or stressful situations. The way you respond is the way they will respond.  Ask yourself: “Is this how I want my child to behave?” When I’m in a stressful situation, I find it helpful to take deep breaths. I have been teaching Ryan the same technique whenever he becomes anxious and overwhelmed.

This week is a wonderful reminder to all of us to be kinder to people and the world around us. Our world can always use some extra kindness!

Last year, I reflected on some of the Presidents who played a significant role in improving the lives of children with disabilities (read the blog here). I thought this year I would share some information on the Every Student Succeeds Act (ESSA) that was recently passed by our current administration. As President Obama commented:

“With this bill, we reaffirm that fundamentally American ideal—that every child, regardless of race, income, background, the zip code where they live, deserves the chance to make of their lives what they will.”

President Obama signing the historic ESSA on December 10, 2015.

ESSA was signed on December 10, 2015, and represents good news for our nation’s schools. This bipartisan measure reauthorizes the 50-year-old Elementary and Secondary Education Act (ESEA), the nation’s national education law and longstanding commitment to equal opportunity for all students.

The new law builds on key areas of progress in recent years, made possible by the efforts of educators, communities, parents, and students across the country.

For example, today, high school graduation rates are at all-time highs. Dropout rates are at historic lows. And more students are going to college than ever before. These achievements provide a firm foundation for further work to expand educational opportunity and improve student outcomes under ESSA.

The previous version of the law, the No Child Left Behind (NCLB) Act, was enacted in 2002. NCLB represented a significant step forward for our nation’s children in many respects, particularly as it shined a light on where students were making progress and where they needed additional support, regardless of race, income, zip code, disability, home language, or background.

ESSA includes provisions that will help to ensure success for students and schools. Below are just a few. The law:

• Advances equity by upholding critical protections for America’s disadvantaged and high-need students.
• Requires—for the first time—that all students in America be taught to high academic standards that will prepare them to succeed in college and careers.
• Ensures that vital information is provided to educators, families, students, and communities through annual statewide assessments that measure students’ progress toward those high standards.
• Helps to support and grow local innovations—including evidence-based and place-based interventions developed by local leaders and educators—consistent with our Investing in Innovation and Promise Neighborhoods
• Sustains and expands this administration’s historic investments in increasing access to high-quality preschool.
• Maintains an expectation that there will be accountability and action to effect positive change in our lowest-performing schools, where groups of students are not making progress, and where graduation rates are low over extended periods of time.

It will now be the responsibility of each state to step forward with their plans for implementation of ESSA. I am hopeful and will be watching and sharing my thoughts with you as it unfolds.

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 stories that caught my eye on a monthly basis.

 ~ Maureen

Autism-Linked Protein Lays Groundwork for Healthy Brain

A gene, known as MDGA1, is now linked to mental disorders helps lay the foundation for a crucial brain structure during prenatal development. These finding reveal new mechanistic insights into the gene.

Read the full article here.

Scientists Find New Vessel for Detecting Autism

Evidence of autism may be found in the composition and malfunction of the brain’s blood vessels, a team of scientists has found. Their research sheds new light on the causes of autism, which previously had pointed to neurological make-up rather than to the vascular system, and identifies a new target for potential therapeutic intervention.

Read the full article here.

Untapped Region in Brain Cell Offers Goldmine of Drug Targets for New Autism Treatments

Scientists have discovered that an overlooked region in brain cells houses a motherlode of mutated genes previously tied to Autism. The finding could provide fresh drug targets and lead to new therapies for the disorder.

Read the full article here.

Tune in next month for an update on autism research!

I recently read the article “How School Systems Create *That* Parent for Children in Special Education.” I’m sure that some would have considered me *that* parent at one time. What does *that* parent look like?

Here she is: a parent who establishes goals for her child, goals that she believes are reachable. She is not discouraged by those that say, “your son will never do that.” She is determined to get the very best programs available for her child. “Appropriate” programs are not enough. In her mind, she is not demanding, she is determined. She is not annoying, she is persistent. However, in the eyes of some *that* parent is demanding, annoying, unrealistic, and unreasonable.

At the Barber National Institute, I encourage our faculty to actively engage their students’ parents. Find out what the parent’s hopes and dreams are for his or her child. Establish a plan to assure ongoing communication between home and school. I remind them that often, lack of communication or miscommunication is the root of misunderstandings that lead to labels such as *that* parent.

Undoubtedly, the journey many parents take to get their children the support and services they need can be an arduous one. And yes, parents must be their child’s greatest advocates. At times, they may need to stand up for what they believe their child needs. From my perspective, it’s great to have the parent’s input and active participation on the team. Together we will accomplish so much more for our children. Let’s hope that in all our schools will adopt a welcoming attitude, erasing the need to be *that* parent.

Read the original article here: http://www.huffingtonpost.com/laurie-levy/how-school-systems-create_b_8806948.html

As I read some information about February being National Children’s Dental Health Month, I thought back to Ryan’s introduction to his dentist, Dr. Garcia. Dr. Garcia is a pediatric dentist and I had heard many families speak highly of him in the past, so I knew Ryan was in the right hands in selecting him for his dentist. Dr. Garcia’s office is very child-friendly and welcoming to both parents and children who might otherwise be anxious about their dental appointment. Over and above the physical environment, all of the staff are exceedingly kind and gentle.

Ryan’s first visit went well and I knew I had made the right selection. We kept our twice a year schedule and over the years got to know Dr. Garcia and his staff very well. There were never issues, except one morning when Ryan was about seven years old. We had a challenging morning, and Ryan was agitated. I didn’t want to cancel the appointment at the last minute, so we went and I alerted Dr. Garcia of our difficulties. The appointment went fine, until… Dr. Garcia had his fingers in Ryan’s mouth for the examination and Ryan closed his mouth – hard! I think that action surprised Dr. Garcia more than it hurt him, however I was embarrassed and displeased with Ryan’s actions. That afternoon, Ryan and I discussed his behavior: why he did what he did, and what would be the consequence. Ryan decided he wanted to write a note of apology to Dr. Garcia. He did and we delivered it to his office the next day and apologized.

Many years later, Dr. Garcia pulled this letter from his file and we smiled and thought how far Ryan had come over the years. Despite Ryan’s age, Dr. Garcia still welcomes Ryan in his practice. Erie, PA is so fortunate to have a man of Dr. Garcia’s expertise!

I did some research on activities to do at home or at school for dental month and wanted to share them with you. Enjoy!

Activity Sheets:

ADA ACTIVITIES 2016

I recently read a blog by a mom who looked back at what she’s learned in the ten years since her son received his diagnosis. This made me stop and think. It’s been 20 years now – what have I learned?

• It is critical that you maintain an attitude that your cup is always half full and not half empty.
• Focus not on the very best days your child has, nor on his worst, but on the average day.
• Regardless of the overwhelming challenges you face, God will always give you strength to move on.
• Set high goals for your child. Don’t limit their potential based upon what others tell you.
• Accept that learning will occur in small steps, but that small steps will lead to a great distance in the long run.
• Similarly, learning will never end for you or your child. Embrace this and be open to the changes that might come as a result.
• You can be a trailblazer – not only for your child, but for all children with autism. It’s never easy, but you will make a difference.
• Overall wellness is essential not only for your but for your child. This includes healthy eating, exercise, and making time for prayer, meditation… or whatever works for you!
• While you will reach a point of acceptance of your child’s diagnosis, it’s okay to still catch yourself dreaming of your child attending college, living independently, and finding people to share their life with.
• All parents know that your love for your child never ceases, but rather inspires you to reach new heights and aspire to do your best. Being a parent of a child with autism is no different.

The journey continues – who knows where the next 20 years will take us!

We had a new student start last week. On his first day, he announced: “This is the best school I’ve ever been to! And you know, I’ve been to a lot of schools.” Comments like this make me feel so proud that we have created a school and community that students and families want to be a part of.

At the Barber National Institute we celebrate each of our children as we focus on their strengths and talents. It’s our motto that “If a child can’t learn in the way that we teach, we must teach in a way that the child can learn (Ignacio Estrada).” We are fortunate in America that we have myriad range of schools to choose from – public, private, charter, religiously affiliated, independent, and even home schooling. This week, we celebrate the opportunity for choice in education through National School Choice Week.

National School Choice week is a large annual celebration that includes over 16,000 events across all 50 states and around the world. Nearly 250 governors, mayors and county leaders have issued proclamations that recognize this week. At the Elizabeth Lee Black School, we are celebrating by writing about or drawing on “What I Like About My School,” a dance with school spirit scarves, and having pictures taken with the classroom teacher.

The students are showing pride in our school and celebrating the choices we offer. We’ll be sharing our events with the National School Choice Week website, taking part in a larger celebration across the nation! Will you be celebrating this week?

https://schoolchoiceweek.com/

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.

~Maureen

Antidepressant Use During Pregnancy Linked to Autism

Women in a new study who took antidepressants during their second and third trimesters of pregnancy showed an 87% increased risk of having a child with an autism spectrum disorder, compared with women who did not take medications for depression while expecting.

Read the full article here.

Autism Screening Reaching More Young Children, but More Work Remains

Researchers found that autism prevalence among 4-year-olds was 13.4 per 1,000 children. Among 8-year-olds, autism prevalence was 14.7 per 1,000 children. Four-year-olds, who in this study were born in 2006, tended to be diagnosed earlier, at 27 months. Eight-year-olds, who in this study were born in 2002, were diagnosed at a median age of 32 months. That finding suggests that over a four-year time span, early evaluation became more widespread.

Read the full article here.

Very Premature Babies at Greater Risk for Autism

Nearly 30 percent of extremely preterm-born children had developed autism spectrum disorder symptoms. Amongst children born after full-term pregnancy, the corresponding figure is 1 percent. Scientists believe that because brain grows best in the womb, premature birth can disrupt the organization of cerebral networks.

Read the full article here.

Trio of Autism-linked Molecules Orchestrate Neuron Connections

New research from Duke University reveals how three proteins work in concert to wire up a specific area of the developing brain that is responsible for processing sensory information. The findings  may also lend insight into brain disorders including autism, depression and addiction, because previous research has linked these proteins individually to those diseases.

Read the full article here.

Tune in next month for an update on autism research!

This quote from Dr. Martin Luther King, Jr. was so meaningful to me, I decided to post it again this year. Our daily challenge is to move forward. Some days it’s easy, some days it is not. But I encourage you to accept this challenge with me!

~ Maureen

Are you one of those men or women who say to yourself, “I really should get more organized?” Then January is the month for you. I recently read that American women spend 55 minutes a day looking for lost or misplaced items. Yes, this is a challenge for all of us but when we think about the difficulty youngsters with ASD often have with core organizational skills, it’s more of a challenge than simply misplacing items. The term “executive functioning” (EF) is often used to describe “brain-based skills” that begin to develop in the first years of life and result in “the ability to maintain an appropriate problem solving set for attaining a future goal.”

Approximately 80% of children with ASD are estimated to have problems with EF. Possible difficulties include:

• Organization: difficulty in organizing the steps of an action in order to follow a request
• Impulse Control: limited control of impulses to sufficiently participate in structured situations
• Planning Memory: lack of identifying the sequence of events necessary to accomplish a task
• Attending: difficulty to focus on the task requested
• Sustaining: ability to maintain strong performance for a short period of time only
• Shifting: trouble with transitioning from one activity to another, even when it’s preferred
• Emotional Control: limited control of emotional expressions

These sound overwhelming but there are some very specific action plans we as parents and teachers can implement. All members of your child’s team need to be involved in this discussion so that there is consistent carry over between the home and the school. Here is one example of an action plan to assist your child with his/her schoolwork.

Recommendation 1 – Help your child organize his/her papers and homework. You can do this by having a folder in his/her backpack with notes for the teacher, and separate folders for each subject area.

Recommendation 2 – Establish a routine for your child to follow in going through his/her backpack. At first, this will need to be a supervised activity or the folders and their contents could all be dumped on the floor.

A PECS schedule can be a great visual support.

Recommendation 3 – Help your child figure out what he/she needs to do for each assignment. Do you need a pencil, crayons, or scissors? What other tools or materials would be helpful?

Recommendation 4 – Consider whether visual supports would help your child be more independent and use newly acquired skills across different settings. There are simple and inexpensive visual activity schedules, self-monitoring activities, and apps that can address your child’s needs for a visual schedule to be successful.

Ryan, I, and his team diligently worked on overcoming his numerous challenges with EF. No, we never found a “cure” but with lots of practice, his ability to organize, plan, and act certainly has improved significantly. Involve your team, take it one step at a time, don’t get overwhelmed, and I guarantee you’ll meet with success.

Sources:

Improving Executive Function In Children with Autism Spectrum Disorders

Executive Function & Theory of Mind

Teaching Organizational Skills to Children with High Functioning Autism and Asberger’s Syndrome