All About Autism

As a parent and an educator, I am always disappointed when I hear some of the myths about intellectual disabilities and Autism that still surface. In this age of the internet and Google, I would expect that people would seek out the facts when this information is literally at their fingertips.

Still, judgements are made based upon information that is presented to them, often without vetting the idea before supporting it. Some of the largest myths that I’ve encountered:

MYTH: Children with Autism do not like physical contact of any kind.

FACT: As they say, “if you’ve met one child with Autism, you’ve met one child with Autism.” Each child with autism is unique, with their own strengths and challenges. It is certainly not a universal rule that they do not like physical contact. Some children love to be held and hugged!

MYTH: Autism is the same as an Intellectual Disability.

FACT: Many children with Autism do not have intellectual disabilities and vice versa. They are two separate disorders. While they can present concurrently, this is not always the case.

MYTH: Children with intellectual disabilities do not graduate from high school.

FACT: They certainly do! Although their curriculum may look different than the traditional, it will follow the same core regulations and requirements set forth by the Department of Education.

MYTH: No individuals with intellectual disabilities live on their own.

FACT: Many individuals live independently or semi-independently, with room-mates and additional support staff.

MYTH: Individuals with autism or intellectual disabilities are not able to get a paying job upon graduation.

FACT: Just in this calendar year, BNI has helped over 40 individuals with intellectual disabilities secure competitive jobs in the community. As I’ve shared with you all in the past (LINK), we have high hopes that these numbers can and will grow!

Are there some myths you hope to dispel here as well? I encourage you to share them below!

Hard to believe it’s July 4^th and summer feels like it’s halfway over! Growing up, I loved seeing the fireworks! Our family would take blankets and refreshments to sit on the golf course, OOHing and AAHing as they went off. Ryan was three when I took him to the fireworks for the first time. I thought for sure he would enjoy the variety of colors and lights high in the sky. However, he immediately started screaming and asking to leave. Of course, we did, and that was the one and only time that we watched the fireworks from outside.

Every child reacts to fireworks differently, but here are a few tips I’ve learned over the years that may help you:

• Prior to the fireworks, watch some videos from YouTube on the computer so that he/she knows what to expect.
• Consider watching the fireworks from indoors. You can still enjoy the lights in the sky without the booming noises.
• Have headphone available, in case the sound – even inside – is too much for your child.
• Celebrate the 4^th by making your own fireworks with these fun craft ideas:
  • Painting Fireworks: http://www.learning4kids.net/2015/12/27/painting-fireworks/
  • Fireworks Salt Painting: http://busymommymedia.com/firework-salt-painting/
  • Popsicle USA Flag: http://www.makeandtakes.com/popsicle-stick-button-flag-kid-craft
• Teach your child the true meaning of the 4^th of July with these great illustrated books on America’s birthday: http://kidsactivitiesblog.com/30010/best-books

Be safe and have a fabulous holiday weekend!

Research Updates

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

New Findings on Probiotics & Autism

In a new study, researchers found that administering a common probiotic eased autism-like behaviors in mice that had low levels of this naturally occurring bacterium in their intestinal tract.

Read the full article here.

https://www.autismspeaks.org/blog/2016/06/24/new-findings-probiotics-and-autism-what-you-need-know

How Extreme Prematurity Ups Autism Risk

                In an extension of an initial study conducted in 2009 at Boston University, nearly 25%  of children born before 28 weeks of gestation showed signs of autism at age 2, and about 15% of those born between 23-24 weeks of pregnancy have autism, compared with 3.4% of children who are born at 27 weeks. Researchers have determined that infants born prematurely have a higher risk of autism and that this risk climbs the earlier a baby is born.

Read the full article here.

https://spectrumnews.org/opinion/q-and-a/questions-for-robert-joseph-how-extreme-prematurity-ups-autism-risk/

Mom’s Immune Markers Flag Autism with Intellectual Disability

Pregnant women with elevated levels of certain immune molecules (interleukin-6) in their blood are at increased risk of having a child with both autism and intellectual disability, according to a new study. The findings suggest that autism in addition to an intellectual disability is a unique condition and that these mothers have a distinct immune profile.

Read the full article here.

https://spectrumnews.org/news/moms-immune-markers-flag-autism-with-intellectual-disability/

Social Problems May Stem from Sense of Touch

Many people with autism report heightened sensory perception and may be acutely aware of sounds or of people or objects touching their skin. Researchers have theorized that this feeling of sensory overload might make social situations overwhelming and challenging to navigate based on a new study with mice. The mice lacking the autism-linked gene MeCP2 in only these touch neurons develop anxiety and social deficits later in life, the researchers found. Conversely, mice that lack MeCP2 in all of their cells except for these neurons show mostly normal social behavior and no signs of anxiety.

Read the full article here.

https://spectrumnews.org/news/autisms-social-problems-may-stem-from-sense-of-touch/

Tune in next month for an update on autism research!

There’s a buzz of excitement among our adults in the Transitional Work Service program. Friday night is ESO Prom! To give you a little back story, several months ago we were approached by “Project Prom,” whose mission is to provide gowns and tuxes to students in the area who otherwise might not be able to afford prom attire. She wondered if some of our students might be interested in participating. I immediately thought about our adults and our monthly ESO dances… although we have never had a prom, we could certainly explore the option!

Expanding Social Opportunities (ESO) is a BNI group that holds monthly dances for adults with disabilities, ages 18 and over, at local colleges. In addition to these adults, college students from each campus attend the dance and assist with planning the event. The dances are a wonderful opportunity for social inclusion and are always greatly anticipated by our adults, including Ryan!

In this age of being all-inclusive, some might say that a dance only for young adults with disabilities works against this philosophy. But I think back to Ryan’s high school Prom experiences. Yes, it was an “inclusive dance,” but little interaction actually occurred between Ryan and his typical classmates. Perhaps Ryan even knew this would be the case – he did not want to go to his high school prom, but I insisted he should. Conversely, he can’t wait for this Friday’s dance!

Even though I am 300% in support of inclusion, seeing the genuine excitement and joy among these adults makes me realize that there is still a place in our society for events like this, events where each attendee feels welcomed and free to be himself or herself. I asked some of our TWS adults why they were looking forward to going, and here is what they shared with me:

“I was born to be a dancer.”

“Because I am taking my girlfriend and get to be with my friends.”

“I get to go to a hotel for dinner!”

Unfortunately, I won’t be able to attend the Prom, as Ryan has told me it’s “off limits!” But I know it will be a great night for all!

PS: A huge THANK YOU to donors – Project Prom, Potratz Floral Shop, DJ Pat Martin, PHB Photography, and Ambassador Banquet and Conference Center!

As I listened to CNBC this morning and learned that today, June 20th, is World Refugee Day, I thought about the number of children we have in our school who are former refugees. One little girl in particular, Angela, is a remarkable story of courage and resilience. Her mother fled her native country because her daughter was unable to get the care and the education and support that she needed. She spent two years in a refugee camp prior to being relocated to Erie. Within two weeks, she was enrolled in our school, began receiving therapies, and soon had a wheelchair. Almost a full school year later, she uses a walker throughout our halls, speaks fluent English, and is preparing to move on to public school. As I look at Angela, I only wish that all refugee children with disabilities could have as a bright a future as she!

Sadly, over 60 million people around the world are now displaced from their homes, having been forced to flee from war, persecution and disaster. While exact statistics on how many of these individuals have disabilities are hard to find, we know that 1 in 66 children have autism so we can estimate the prevalence of children with autism in these refugee populations.

As the UN High Commissioner for Refugees described in stark terms in 2009, the reality for most displaced persons with disabilities is dire: “Too often invisible, too often overlooked, refugees with disabilities are among the most isolated, socially excluded and marginalized of all displaced populations.”

Fortunately, over the last several years the United Nations refugee agency (UNHCR), working with the Women’s Refugee Commission and other partners, has developed new policies and tools designed to improve protection and services for displaced persons with disabilities. These promising first steps give me hope that one day all children with disabilities may be given the opportunity to develop to their fullest potential!

In the wake of the tragic events in Orlando over the past week, I have been seeing several positive posts, quotes, and sentiments about spreading love and kindness to one another. I couldn’t agree more! But it got me thinking – what, exactly, is kindness?

Kind [kahynd]

Adjective 1. considerate, or helpful; humane

I wanted to read the definitions of these words so that I could be reminded of their meaning. I was initially put off by the idea that kindness was defined by the term “humane.” However, the more I thought about it, the more it seems spot on. Kindness is the most basic act of humane-ness that there is. To be humane implies that we don’t hurt one another, by words or by actions. That got me thinking about another word:

Tolerance [tol-er-uh ns]

Noun 1. a fair, objective, and permissive attitude toward those whose opinions, beliefs, practices, racial or ethnic origins, etc., differ from one’s own; freedom from bigotry.

Reading this definition, it seems to me that tolerance and kindness are synonymous. Our world is a wonderfully diverse place; it’s up to each of us to promote and demonstrate tolerance and kindness in our everyday lives. The world can be a kind place, and it starts with you!

Last week, I shared some important safety reminders that all of us need to keep in mind during the summer. However, even before thinking about safety, you need to consider how the transition from school to summer will go. This can be a challenging time for some families – it was certainly a challenge for Ryan and I! What I learned over the years was that structure is essential and a day full of planned activities was best. To facilitate this, we would look at the calendar at the beginning of the summer and count the number of days for summer vacation. Then, we would add our activities to each day. This way, Ryan could look ahead and see what day he was going to be golfing, or going to the amusement park, or just beaching it on Lake Erie. Having a schedule helped to reduce his anxiety about what he would do the following day and reassured him that he would be having lots of fun throughout his summer vacation!

Some other tips I would recommend to help make the transition an easy one:

• Include lots of physical activity. Students get weary by the end of the school year from sitting at a desk day in and day out. Help them to release all their bottled up energy by playing outside, jogging, or engaging in team sports. Plus, it’s good for their health!
• Communicate by talking about the changes that will be occurring soon and even consider starting a countdown to the first day of summer. The more time you give your child to prepare, the easier the transition can be. Likewise, as August neared I reached out to the school to schedule a time for Ryan to visit, meet his new teachers and see his new classroom. Giving him time to prepare and reminding him that the change was coming ensured a smoother start to the new school year.
• Although Ryan didn’t participate in any of the traditional summer camps, today there are so many more opportunities to consider. The best way to find out what’s available is get on the internet and google summer camp options in your area. (Read my blog here on all of the BNI’s summer opportunities!)

Do you have any additional tips that have worked well with your children? Please share below!

Two of our preschool graduates

Thursday night was a momentous evening at the Barber National Institute! We celebrated the 2016 graduation with over 70 preschool, elementary, and high school students. Each of our students comes to the stage and receives their diploma. A representative from the local school district presents their official diploma to the high school graduates. We close the program with our school song, which was written by one of our teachers (Julie) and her husband Chris, members of the band Tennessee Back Porch when Dr. Gertrude Barber passed away. It has been sung at every graduation since! There were only a few dry eyes in our crowd of 400 family members and friends of our graduates!

Celebrate What’s Different

By Chris & Julie Moore

There’s a light on the shore of Lake Erie

Through the fog of ignorance it shines

Where a future awaits every child

Yours and mine, yours and mine

Building on the dream of Gertrude Barber

That for everyone there is a place

Knowing the light is always there to guide us

On our way, on our way

And we’ll celebrate what’s different

Knowing we’re all the same

The dream of school and family has come true

You will learn from me, and I will learn from you

And we’ll spread the light to others every day

And the Barber National Institute’s the way

At the Elizabeth Lee Black School, the air is buzzing with excitement. That’s because summer break is here in only 6 more school days! Summer is a busy and happy time for all of us, but with all of the outdoor activity many parents have an added worry about wandering and the safety of their child. It’s no wonder, then, that June is National Safety Month.

I particularly like to bring awareness to this time of year, because there are so many great tips and resources available to families to help with safety and prevention. Below I’ve shared some of my most “tried and true” tips, but I welcome any new ones in the comments below!

Ryan kayaking over the summer months in Erie.

Water Safety & Swim Lessons

Living in Erie, water safety is a critical issue. Yet, it is an important issue wherever you reside. Children with autism are often attracted to water sources such as pools, ponds, and lakes. Since most children with ASD are rule-driven, setting specific rules as to how your child is to handle being around water is essential. It is even more important to practice those rules in real life situations. I really encourage parents to consider teaching your child to swim as well. Who knows, he or she may even find they love the activity! When Ryan started his swimming lessons at 2, he refused to put his head under water. Today, he swims laps in the LECOM pool an hour at a time.

Consider a Medical ID Bracelet or a personal tracking device

Depending upon your child’s age and verbal skills, you may want to purchase an ID Bracelet for your child. Include your name and telephone number and state that your child has autism. Once your child is over 16, they are also eligible to get an ID card from the DMV. If your child will not wear a bracelet or necklace, carrying an ID card or even a temporary tattoo with your contact information are other options if you know you’ll be out on the town for the day. Alternatively, tracking devices are available to place in your child’s pocket or backpack. It works with your computer or mobile phone to allow you to monitor your child’s location.

Wandering prevention

One example of ID bracelets available.

Using deadbolt locks, keeping doors and windows locked and installing an alarm on doors are some ways to help prevent wandering while indoors. For children who respond well to visual cues, consider placing STOP or DO NOT ENTER signs around as these can be powerful reminders. We have lots of doors in our house, so I installed alarms on all of them so that I would know when Ryan exited if I were in another room.

For families who are just starting to form a safety and prevention plan, I highly recommend downloading the Big Red Safety Toolkit, provided by National Autism Association. It has GREAT resources and worksheets to help put a plan in place.

http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf

Have a safe and happy summer to all!!

Who could believe that it’s already June 2^nd and we are halfway through our year?? Are you one of those people like me who begin thinking about “resolutions” at the beginning of any new year? Whether it’s making more time for yourself, exercising, or eating more nutritiously, resolutions tend to start strong in January… but by May or June are only a distant memory!

So what I’ve decided to do is make June my “Re-Resolution Month!” I am going to write my resolutions down (again!), and this time I’ll schedule an appointment with myself to review these goals weekly and chart my progress. If you know me, I am DATA-DRIVEN, so I hope that by charting my own progress, I will make myself accountable… to myself!

Spring of every school year is hectic and I was discouraged as I reflected on my progress, or lack thereof, towards my January 2016 resolutions. I’m a big believer that “Each day is a new day,” and I realized that there is no reason why my resolutions can’t fit this motto as well. In fact, it’s never too late to set a new goal or resolution for yourself – no matter what time of year it is.

Ryan and I have re-established our goal of eating nutritiously. We’ve listed the foods that we can eat, and the foods that we can’t eat, and have determined the number of times per week we can treat ourselves to the “not-so-healthy” foods. The list alone feels like progress for both of us!

I’ll keep you in the loop as to how we progress through the summer!