All About Autism

As we approach Christmas, I began thinking about Christmases past. Ryan’s first Christmas was quite eventful. Erie was in the midst of the Blizzard of ‘93, and we were picking up my mother and driving to Uncle Joe’s house for Christmas dinner. Typically, it takes 45 minutes to get to his home – on this evening, it took one hour just to get to my mother’s home! There was no visibility, but we forged ahead in hopes that the weather would get better. By the time arrived, there were “No Travel” advisories on every TV station. Rather than risk driving off the road with a newborn baby, we turned around and drove home.

Since that first year, Ryan has experienced every kind of Christmas imaginable. Regardless of the weather, we have been fortunate to spend this special day surrounded by family and good friends. This year, while it may not be a white Christmas, Ryan is hosting a Jingle & Mingle party for many of his cousins, aunts, and uncles. Ryan is turning out to be quite a party planner! He loves the idea of people coming to his house, choosing the goodies to eat and drink, and being in charge. It will be a very Merry Christmas – I hope yours is as well!!

Our students happily open presents from Santa & Mrs. Claus.

With Christmas just around the corner, I’m thinking about gifts for my nieces’ children. Since they are still very young, I want to be sure to be careful in my choice, and that I select something safe and age-appropriate. It’s similar to purchasing a toy for a child with special needs. It’s essential to match their stages of development and emerging abilities, but still fun.

For those of you that may be walking the aisles of Toys ‘R Us like me, here is an excellent article that provides guidance on toys for children from infancy through kindergarten. It also provides lots of activities to go with the various toys.

http://www.naeyc.org/ecp/resources/goodtoys

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. After the positive response I received when I posted Top Research Stories of2014, I thought I would share on a monthly basis stories that caught my eye.

 ~ Maureen

Children Who Lose Autism Label Subject of New Research

Some children who are diagnosed with an autism spectrum disorder go on to lose that diagnosis, but according to their parents, that change is not because of treatment or the child’s maturity. Rather, health professionals often make a different diagnosis based on more information on the child’s behavior, often ADHD.

Read the full article here.

Poverty Affects Children’s Brains at a Crucial Time

Children from families below the poverty line exhibited “systematic structural differences” in their brains, with 7-10% less gray matter in the three tested areas than those children living above the poverty line. The participants below the poverty line also scored significantly lower on the academic achievement tests; the researchers estimate that 15 to 20% of this difference can be attributed to the differences in brain development.

Read the full article here.

Study Finds Way to Track Exposures That May Contribute to Autism

Autism researchers have found a promising new method to detect prenatal exposures that may increase risk for autism – and to do so years after the exposures occurred. They will now look for markers for less-obvious toxic exposures suspected to increase autism risk. These include exposure to pesticides, air pollution, plasticizers and maternal inflammation during pregnancy.

Read the full article here.

Novel Technique Shows How Autism Affects Social Brain

Brain areas linked to social behaviors are both underdeveloped and insufficiently networked in youths with high functioning autism spectrum disorder, according to research published in the journal Brain and Behavior.

Read the full article here.

Signs of Dyslexia May Be Present in the Brain from Birth

5 to 17% of all children have developmental dyslexia, or unexplained reading difficulty. When a parent has dyslexia, the odds jump to 50%. Typically, though, dyslexia isn’t diagnosed until the end of second grade or as late as third grade, when interventions are less effective and self-esteem has already suffered. A new study has found that the writing is on the wall as early as infancy—if only there were a way to read it and intervene before the academic, social and emotional damage is done. In 2012, the Gaab Lab showed that pre-readers with a family history of dyslexia (average age 5½) have differences in the left hemisphere of their brains, according to MRI results.

Read the full article here.

Tune in next month for an update on autism research!

Merry Christmas!

Yesterday was our holiday program. This is always a favorite event of mine. Not only do we get to see the hard work and efforts of our students and staff, but because this is a wonderful day to celebrate the uniqueness of each of our students. As I have touched on in the past, there was certainly a time when students like ours were not celebrated for “being different.” Quite the opposite, they were hidden away in institutions or stayed at home with their parents with minimal contact with society at large.

I’m glad to say that today, we live in a world where being different is not only accepted, it’s celebrated. No longer do we use the term “disabled,” but instead we focus on “different abilities.” I, for one, couldn’t be more pleased with these developments, because it reflects a great change in the attitudes of our society.

I’m confident that parents and teachers/therapists would agree with me that regardless of abilities, we learn special lessons from each of our children. It’s these lessons that provide us with a greater understanding and perception of the world around us. I’ve learned such special lessons from Ryan, and I am a much better person today because of that!

My new year’s wish is that this momentum of celebrating our differences continues to grow and be embraced by people everywhere!

Although the holiday season is joyful, the recent shootings in San Bernardino and the terrorist attacks in Paris have cast a dark shadow across our world. Personally speaking, these events created lots of anxiety in Ryan. When Paris occurred, he wanted to know how far Paris was from Erie, and stated “We never have to go to Paris, right Mom?” Ryan has high anxiety levels at all times, so it’s no surprise that when he hears about terrorists hurting people his anxiety sky rockets.

Over the years, I’ve developed strategies that help him calm down after events such as this. First, I talk to him about what occurred in general, omitting the morbid details as much as possible.

We discuss how everyone feels about what happened and how he feels in particular. A big part of helping him to relax is reviewing how safe he is at home, so he doesn’t need to worry about terrorists attacking in our backyard.

Unfortunately, then came San Bernardino. Although California is on the other side of the country, to Ryan it’s the United States and therefore close by. I was careful not to mention the type of facility, knowing that he would immediately draw parallels to where we work. By downplaying the seriousness of the attack as well as monitoring his exposure to the TV news, he was not as upset as with Paris.

Wondering what else I could be doing, I looked on the internet to see what resources are out there to help parents help their children when events such as this occur. The best one I found was a guest blog by Dr. Peter Faustino via Autism Speaks, who shares six tips for talking to your child about tragedy. I invite you to read it here. Are there any tips you’ve found that seem to work well? Please share below!

“We mark this year’s International Day of Persons with Disabilities in the wake of the adoption of the ambitious 2030 Agenda for Sustainable Development. This global blueprint for action summons us to ‘leave no one behind.’”

These powerful words by the Secretary of the U.N. serve as the framework for the 2015 International Day of Persons with Disabilities. My initial thought was: how does sustainable development relate to persons with disabilities? Doing a bit of research, I found that there are three dimensions of sustainable development – environmental, economic, and social. It’s in the social dimension that most of us think about inclusion.

Sustainability goes hand-in-hand with inclusion; you can’t have a truly sustainable society while excluding some from this equation. 60 years ago, persons with disabilities had no place in society. Today, while their voice is heard in all aspects of life, there is certainly room to grow.

A truly sustainable society is one in which all individuals are empowered, enabling them to take advantage of opportunities, which in turn allows them to become active and contributing members of society. It’s our responsibility to assure that all of our citizens have access to employment, health care, education, and safe housing – in other words, as our founding fathers said: life, liberty, and the pursuit of happiness for all.

What can each of us do?

We can promote awareness and support and strive to spread this positive message of empowerment throughout each of our own communities. As Van Gogh said: “Great things are not done by impulse, but by a series of small things brought together.”

Ryan turns 22 tomorrow, December 2nd!

As I write those words, I find it difficult to believe that 22 years have passed.

It was just yesterday…..

Ryan was 4 months and starting Happy Hearts, the Barber Center child care program located down the street from our main building. Its close proximity provided me the opportunity to visit during lunch and check in on him. And then he celebrated his first birthday with a “party” with his fellow classmates.

Soon after his diagnosis at 2, we were implementing an ABA program mornings, afternoons, and weekends. He was a busy young man!!!! And so was I. It was “hard work,” but I do attribute much of his success to the intensity of the program in his very early years.

From elementary through middle school, he was fortunate to have some strong administrators (especially Mrs. Mosely) and caring teachers who challenged him to be the best he could be. By the time he was in high school, he was ready to say goodbye to school and move into the world of work. He volunteered at Bello’s Market as a Junior and Senior, and was offered a job there upon graduation. He continues to work there Monday, Tuesday, and Thursday mornings, completing their maintenance needs. He works with our Transitional Work Service program in maintenance Monday through Friday afternoons. He loves working! He has probably the best work ethic of any young person that I know.

Another facet of Ryan is his interest in and commitment to fitness. He participated in the kid’s marathon at age nine, skied and loved the outdoors. Today, he works out at LECOM twice a day, by swimming, running, lifting weights, golfing, and racquetball. He motivates me to go as well. However, I must say it is hard to keep up with him! He completed the Barber Beast on the Bay this year, and was smiling as he crossed the finish line. That was a very proud moment for him and for me.

I’m often asked what I see for his future. Although I’ve given the idea much thought, I know I can’t simply shake a Magic 8 ball and read what the future holds. He has already exceeded so many of my expectations! I know that he’ll continue to develop and excel in his areas of interest – who knows what the future will bring!

Tune in next year and I’ll fill you in on what Ryan’s 22^nd year held!

As I’m sure is the case for many of you, this time of year always makes me stop and think a little longer about what I’m thankful for. I’ll share a few of my thoughts with you – please feel free to add on!

I am grateful for:

• The creative, committed, enthusiastic, loyal staff members who work with our children, adults, and their families
• An organization that is always striving to improve the lives of children and adults with disabilities through the latest technology, research, programming, and training
• The children and adults themselves, who remind me every day that life is precious, and that each of us is given our challenges, but also have gifts to offer.
• A supportive family, through good times and bad
• A community that comes together to show support for multiple causes
• Good health
• A son who has taught me much and helped me to grow in numerous ways
• A country founded on the values of freedom and liberty for all

Happy Thanksgiving to all!