All About Autism

January is national thank you month! I was preparing to write a blog on this topic and looked back to January of last year to see what I had written. As I re-read, I thought to myself the blog was right on and contains thoughts similar to what I would want to address today. So I decided to repost last year’s blog – I hope you find some good ideas, and “Thank you” for sharing your recommendations with me as well!!

~ Maureen

Originally posted January 25, 2015

“Thank You.” These are two words that I taught Ryan as soon as he was speaking. To me, being polite is an important virtue for parents to teach their children. As Ryan progressed through school, one of the positive comments his teachers always gave me was, “He is so polite. I wish all the students were like him.”

Did you know that January is National Thank You Month? This is the perfect opportunity to find the time to celebrate all that you are grateful for. I am grateful for so much. Good health; supportive family and friends; creative, hardworking co-workers; working for an organization whose goal is to make dreams come true for children and adults with disabilities … to name just a few!

It’s easy to forget to pause and express your gratitude to the people in your life who are there for you day-in and day-out. There are also those who you may seldom see but who have played an important role in your life at some point. This is the perfect month to reach out both! Below is a handful of ways to say thank you:

• Write a handwritten note or letter to someone you are thankful for
• Take a friend out to coffee or lunch and tell them you appreciate their support
• Surprise a loved one with flowers and tell them you value all they do
• Start a gratitude journal, writing at least one thing a day that you are grateful for. Ryan and I daily stop and tell each other something we are grateful for.
• Thank your coworkers for their hard work, acknowledging that often it takes a team to get the job done

And don’t forget to thank people for the simple things: bagging your groceries, cashing you out at the gas station… The list goes on!

On New Year’s Eve, tragedy struck in Allentown, PA. Every parent’s worst fear: a small, 5 year old boy with autism had wandered off during a family party at the house. Two days later, everyone’s worst fears were realized. Moments such as this remind us of the importance in trying to prevent wandering, but also in being prepared for it should it happen.

Over the years, I have shared some safety measures you can take for wandering children. Below I have revisited the most important tips that have helped me over the years. Remember – preparation is the most important thing you can do in the event of an emergency!

Identification – Today, there are many options available. ID cards that include your child’s picture, height, weight, hair/eye color and any other identifying marks are the most traditional and least expensive method, but ID bracelets, necklaces, and even temporary tattoos are other options. Should your child be found by a stranger, ID cards can relay important medical information as well as whom to contact in the event of an emergency.

Tracking Devices – Oh, the power of technology! Today, there are several varieties of tracking devices. Some are GPS style bracelets that are typically facilitated by local law enforcement. Others are small units able to be placed in a child’s pocket or backpack that you can monitor from your phone or computer. Whatever your preference, it’s important to remember that tracking devices are a last measure device – close adult supervision and home security should always be taken as a primary measure of your child’s safety.

Water Safety – I have mentioned this several times, but I am so thankful that Ryan learned to swim at an early age. Although I am pleased he finds it therapeutic and it is a good form of exercise, my primary intention was to prevent drowning should Ryan ever wander towards a body of water. Remember that swimming lessons with a child with autism may go more slowly, but it is well worth your patience!

Community Support – A very simple yet often overlooked step. Get to know your neighbors. Plan a brief visit to several surrounding homes to introduce yourself and your child, describing some of the positive as well as challenging behaviors of your child. I always emphasized the issue of wandering an stressed that if a neighbor saw Ryan out by himself to please engage him in conversation and walk him home. You can provide your neighbor with a small handout with your contact information.

Home Security – There are many inexpensive possibilities. I have an alarm system on my doors so that whenever the door opens, a bell rings. This has been very helpful – especially when you are not in the same room as your child.

911 Call Center – in Erie and many communities these centers maintain a special needs registry. I signed Ryan up many years ago… again, another precaution.
Practice, practice, practice! Since Ryan was a preschooler, we’ve talked about staying close to me at all times when out and about. Our term is “stuck like glue.” Whenever we’re out I expect a crowd. We role play and talk about what he’s supposed to do and what he should do if he becomes lost.

My prayers go out to all families who have experienced such tragedies! Please feel free to share any helpful tips I may have missed below.

2015 was quite a year! In bringing in the new year, I thought it would be fitting to spend one last moment reflecting on the great accomplishments of this past year, before turning forward to 2016. Thank you to all of you who made such a great year possible! Some of my personal favorite moments included:

• Learning ELBS was the recipient of the National Association of Private Special Education Center’s award for “Leadership and Innovation in Special Education”
• The continued impressiveness of the EBLS staff – their top quality, innovativeness, and sheer drive to succeed with children who others have written off. Regardless of the challenges, they continue to return because they believe in the children and the mission. Without them, none of this would be possible!
• Our wonderful ELBS families – Theirs can be a tough 24 hours a day but they never falter always trying to make their childrens’ lives the best they can be and to keep working on the team
• The support of our Erie community – Countless times over the past year I have been humbled and in awe of how our community is always open to helping those in need and spreading kindness
• The expansion of our programs to serve children with ASD and ID who present challenges to public schools
• The conclusion of our two-year Artist-in-Residency program with Jude Shingle, which allowed us to explore iMovies and other forms of Social Modeling in the technology world for the first time

I anticipate that 2016 will bring many new opportunities and exciting adventures. I hope that you will continue to join me through this journey!

This final week of 2015, I am taking a page out of Maria Shriver’s book to give myself a “digital detox” from blogging, Facebook, and Twitter, and to truly reflect about the things that made this past year so wonderful.

As you ring in the new year, I wish you all an abundance of health and happiness for 2016!!

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!