Monthly Archives: April 2013

Families of autism, it’s not your fault

Connor and Cayden Long. A true and inspiring relationship of brotherhood.

Connor and Cayden Long. A true and inspiring relationship of brotherhood.

For years I heard a common phrase about parents with autistic children.

“It’s your fault.”

“It’s your fault your child is autistic. You didn’t love your son or daughter enough nor did you show them enough attention during their early childhood. ”

“It’s your fault they are not ‘normal.'”

Well to those “experts” who said that, you can take that opinion and shove it because I’m willing to bet most of you don’t know the first thing about connecting with autistic people. Sure you can give us a lecture on all of the symptoms, but when it comes to forging a trusting relationship, where do you begin?

For some parents who are raising an autistic child, it is not your fault. You were given the instruction manual for a Ford, but you were given a Ferrari instead. This makes your child no different than anybody else. It just means you will have a much different experience than everyone else. It also means you will have one hell of a ride ahead of you. When children are first diagnosed with the disorder, some parents feel anger, denial and guilt.

“Why did this happen to me? Is there anything I could have done to prevent this from happening?” 

In the tougher times, remember you are the expert of your child. You brought him/her into this world. You know what they like, what they dislike. What makes them tick. What makes them feel like they are on cloud nine. 

Today, while browsing around on the Internet, I found a TED talk video about a woman named Alicia Arenas. Arenas is a “glass child.” A glass child is someone who has a special needs sibling. Arenas’ brother, Mario, was severely autistic and violent. He would hit and bite her on a daily basis.

Arenas spoke of being a glass child from first-hand experience. I disagreed with her overall belief of glass children, because experiences with autistic people differ so greatly. While I disagreed with the tone of Arenas’ talk, I respect her for having the courage to talk about her experiences as well as some of her statements.

Arenas said the reason siblings of autistic individuals are called glass children is because people look right through us. We become the caretakers of the family. The needs of our parents and our special needs sibling come before our own. When we are asked how we are doing, most of us say, “I’m doing fine,” when we are not.

Maybe some siblings feel this way, but I never once felt neglected by my own parents. My parents explained Brian’s autism to me and I knew there would be times he would need my parents’ full attention. I understood it and accepted it, but I cannot say my parents looked right through me. They made sure to put aside time for me, to let me know that while Brian may need their full focus for hours at a time, they still loved me.

Brian and I are a year and a half apart. As we grew up, yes I did feel like I had to take on the caretaker role. When I grew old enough, my parents would ask me to watch Brian so they could go out for a few hours. I had a small idea about their daily lives, but I knew enough to recognize they needed a well-deserved break.

I still recognize that today, but now I enjoy spending time with Brian. He’s helped me appreciate the little things in life. Maybe it’s a walk in the park. Maybe it’s playing in the sand at the beach. Maybe it’s just realizing how lucky I am to be the person I am today.

 

The puzzle of autism

 

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The puzzle piece logo has become the symbol of autism since it was first created in 1963 by the National Autistic Society.

The puzzle piece, according to the National Autistic Society, serves as an effective logo because the disorder is so puzzling. Autism isolates them from normal interaction with others and they do no “fit in.” The interlocking multicolored logo also represents the wide spectrum and mystery of the the disorder. The vibrant colors are said to represent hope.

Out in Plymouth Meeting, P.A.,  Colonial Elementary School decided to take a new route toward raising autism awareness. Teachers and students came together to create a giant autism human ribbon.

Colonial Elementary School.

Colonial Elementary School.

The puzzle piece itself can be applied to other part of life as well. In our normal, everyday lives we too look for a place to fit into society. This was probably most evident during our formative school years. Each of us wanted to be part of a group of friends. To feel like we belonged to something that mattered. This continues when formal schooling ends. We look for our place in the world and how we can make it better.

Each of us is a piece of a much larger and more vibrant puzzle. We are each our own unique piece at one point in our lives. Sometimes we’re the corner piece that everyone recognizes. Other times we are in the center of the puzzle where we get lost in a sea of other pieces. We are not the same person we were five years ago. Our roles, beliefs and attitudes constantly change. Our shape constantly changes, but we always have a distinct shape, a place where only we will fit.

Autistic people are the same way. Although they may differ from us in their thought process and how they interact they are important to the puzzle. They hold together other pieces. If one piece is missing, the puzzle is incomplete.

 

Fun Fact of the day:

Every charity under the sun has a ribbon to promote its cause. But where did all of this originate? Its beginning can be traced back to the early nineties during the Persian Gulf War.  Americans began decorating their yards with yellow ribbons to let the troops know they were welcome back. After the treatment of veterans during the Vietnam War, Americans wanted their soldiers to know they were still loved. The song “Tie a Yellow Ribbon Round the Ole Oak Tree” inspired the use of yellow ribbons. (The full story can be found here.)

 

 

 

Animals and autism

Mobility-Assistance-Dog

There are multiple ways to treat autism.

Therapies range from hyperbaric therapy to physical therapy to music therapy. Each of these can help improve the lives of autistic individuals, but in recent years another form of therapy has caught my attention. One that needs no form of verbal communication.

Animals have a sixth sense. Dogs and cats seem to know we are leaving for a weekend vacation before our bags are even packed. They know when we have hit rock bottom and need a little reassurance that somebody still loves us. Other animals just know when to comfort, protect and accept a human being.

The story of one type of therapy begins with Karen Shirk. Shirk needed a ventilator to breathe and the service dog agencies she applied to said she was too disabled to have a dog.  After years and years of trying, Karen finally received her own dog. She became inspired to start her own organization where applicants would not be judged on severity of their disability. This is where 4 Paws for Ability began.

images (1)Today 4 Paws for Ability has become the standard across the country in placing “highly skilled Autism Assistance Dogs” with autistic families. The non-profit organization not only helps autistic families, but families with children of all disabilities. No one is turned away as long as they have a physician’s approval.

Over the years, Brian has developed a special relationship with one dog in particular. My cousin and his wife have a dog named Ace. He is a Shiba Inu. That means Ace is full of energy. Whenever he is around Brian though, Ace seems to know to tone it back a bit. He has this sense that his playful manner may come across as too much for Brian to handle. 

Aside from Ace, Brian also participated in horseback riding therapy for a few years at Thorncroft Equestrain Center. This center helps all people with disabilities and special needs. Through numerous scientific studies, results have shown that riding horses “provides balance, strength, mobility, and improved self esteem.” These horses, along with autism service dogs, can do wonders for those with the disorder. Both of these animals have an understanding of who autistic people are. A relationship develops between them that needs no words. Just watch and you’ll see the bond between them. 

Down in Florida, another non-profit charity program has gained significant notoriety in autism therapy. Island Dolphin Care brings together one of the most gentle creatures of the ocean with the some of the most gentle people on land. The organization also works with children at risk and wounded veterans. One family praised the charity, saying their son became “alive and vibrant” when interacting with the dolphins.

Photo from Island Dolphin Care website.

Photo from Island Dolphin Care website.

It’s sometimes strange to think about how close we become with our animals. We never converse in a single conversation, yet we form a relationship that is sometimes deeper than we have with our own friends and family. I think this happens because animals accept us for us. Their loyalty never waivers no matter what we do. At the end of the day, they will always be by our sides.

 

 

 

*A commenter brought up another non-profit organization called Autism Service Dogs of America

Autism on the tracks

Photo via Reddit

Photo via Reddit

Very few things seem to be universal in the autism world.

Symptoms, personalities and place on the spectrum vary so greatly, that fully understanding the disorder can be a challenge.

Over the past few days, I have found a couple different stories about autistic people and their love for trains. These stories intrigued me because my brother Brian also has a liking for trains as well. My dad and him go out to train museums several times a year and spend the entire day there. Brian has also received several train sets for Christmas and once I grew out of my Thomas the Tank Engine toys, he picked up right where I left off. I wish I had taken pictures of some of the trains he laid down because they were remarkable. A few took up an entire room.

Aside from Brian, it seems like Thomas the Tank Engine is a favorite among several other thomas-the-tank-engineautistic individuals. One blogger believes it may be because of the limited facial expressions of the characters. Another reason is because the background is always still. There is little distraction, so if an autistic person is watching, they can focus more on the characters.

Trains may also appeal to autistic people because there is always order. A train will never start with the caboose and have the engine in the middle. I cannot speak for other autistic people, but this parallels the daily planner for my brother. When Brian wakes up, he almost immediately asks for his schedule. In this breakdown of the day, there is structure and order. It leaves little room for guessing.

Up in New York City, the New York Transit Museum has seen a significant rise in field trip requests for autistic classes as well as autistic customers. Seeing how popular trains have become, the museum founded an after-school program called “Subway Sleuths” for 9- and 10-year-olds. The program focuses on the history of New York City trains while working on the social skills. The program became so popular, it needed further expansion.

Autism is the avenue for greater acceptance

Photo of USA Today

Photo from USA Today

Autism may be at the forefront of mental health news, but it also gives a brand new avenue to advocate for other special needs individuals.

This blog is largely centered around autism and my brother, but whenever special needs becomes the topic of discussion in the national media, I cannot help but smile most of the time. Some of the most entertaining and unique people I have met are special needs.

Autistic people are fun to be around. They have no filter and are so incredibly blunt with you. In a previous post, I said you’ll need a sense of humor when interacting with autistic people. That statement is also true with other special needs individuals.

I’ve said this many times in the past. People with down syndrome are the happiest bunch I have ever seen. I can not recollect a time where I saw a frown on someone who has down syndrome. I’ve actually come to believe that it is almost impossible for them to be sad.

A few days ago, I found a story on the Internet.

Thursday night the Cincinnati Reds had a special guest in the dugout with them. His name was Ted Kremer and he served as the team’s honorary bat boy during their game against the Miami Marlins.

In the bottom of the sixth inning, the Reds were up 9-1. With one out and a man on first base, Todd Frazier of the Reds stepped up to the plate. Prior to this, Ted had a small request. He wanted a home run from Frazier. This is what ensured.

Frazier said he was smiling before he hit home plate because he knew who would be there to congratulate him. As you can see, Ted brings so much excitement and enthusiasm to the Reds.

Sports seems to be the place for acceptance of special needs in today’s society. A few years ago, an autistic man sang the National Anthem at Fenway Park. When he started to get a little nervous, Red Sox Nation helped him finish strong.

Screen shot from the E:60 short "Perfect." Heath White carries his daughter Paisley across the finish line at a race.

Screen shot from the E:60 short “Perfect.” Heath White carries his daughter Paisley across the finish line at a race.

E:60, a show on ESPN, aired a story that was raw and real. It tells the story of a father who was the All-American for most of his life, until he found out his daughter would be born with down syndrome. He struggled to cope with the realization that his daughter Paisley wasn’t “perfect.” As an avid runner, he found a way for him and his daughter to connect. He began running all kinds of races, pushing Paisley the whole way.

It is these stories that will hopefully bring universal acceptance of not only autistic people, but all special needs individuals.

Autism awareness today

Over the past ten years, autism awareness has increased dramatically.

More is known about the disorder than ever and acceptance is now the main topic of discussion. Several notable organizations and people have stepped up in an effort to educate and promote autism. Niklas Kronwall, a defenseman for the Detroit Red Wings, donated tickets to every home game to families living with autism. Kronwall felt moved when Michigan State University basketball player Anthony Ianni spoke about overcoming his challenges with autism.

smHEADERUp in New York City, the New York Mets have created a “quiet section” for families with autistic children. This April, they are offering tickets to numerous groups for Autism Awareness Month. The Theater Development Fund in NYC has also contributed to the cause with its autism-friendly shows on Broadyway.

As autism has become more and more prevalent in today’s society and culture, more people have stepped up to help these wonderful individuals. My parents run a non-profit group (A.A.L.I.V.E.) to help fund some events for adults with autism. Since the charity’s inception five years ago, A.A.L.I.V.E. has built and fostered many relationships. One of the deepest relationships is with Juniper Hill Farms.

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The Juniper Hill Gang. Click on the image to make it bigger. (Photo courtesy of the Juniper Hills website) 

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Some of the Juniper Hill Guys at the Wells Fargo Center

Juniper Hill Farms is not a group home, nor is it a facility. It is “a model of independent living for adults on the autism spectrum.” They go on outings in the community and do chores on the farm. Basically, they live like everybody else. 

I have had the good fortune of meeting some of these fantastic people through my parent’s work. I’d like to introduce some of them to you.

Brent – Brent was one of the first people I met from Juniper Hills. He is incredible at making blankets. My parents have bought a couple of them. You can check them out here. Brent may be on the quiet side when you first meet him, but he’s one of the most fun people to be around.

Andy – Andy is one of the most fun people I have ever met. There is never a dull moment with him. If you’re ever having a bad day, Andy should be the first person to call. It’s impossible to be sad around him.

Ray – Who needs college when you can talk to Ray? He’s a walking encyclopedia.

 

 

 

 

 

 

Autism is anything but adversity

BRIAN_Dad_Boat

Autism has been a great teacher.

Four years ago, like any high schooler, I began searching the Internet for college scholarships. I happened to come along the Horatio Alger Association. This organization offered a scholarship to anyone who wrote an essay about facing adversity.

Adversity shows itself in many different forms. If you get a bad grade in school, the adversity may be to study that much harder for a better grade. A journey is only memorable when you’ve pushed yourself along the way.

With autism, some parents face the adversity of raising a child who is “different.” Siblings face that as well. Barbara Cain of Time magazine put out an article about the “invisible victims” of autism. What she found most striking about the siblings she spoke to was their “fierce devotion they showed to their affected brother or sister.”

I feel I have that same devotion, loyalty and care to my own brother. When applying for the Horatio Alger scholarship, I thought about what adversity I had faced. What I came to realize is that my adversity is showing others than growing up with Brian was anything but adversity. This is the essay I submitted:

 

“Have you ever been witness to an individual who is quietly enjoying watching their fingers dance before their eyes? Routinely, this behavior is deemed peculiar – sometimes followed by “what a misfortune.” The dictionary defines adversity as “a state, condition, or instance of serious or continued difficulty”.

 More often than not others perceive the “adversity” I face as a hardship or crucible. In my mind having a brother who is mentally challenged as well as classically autistic, is not an adversity. My adversity is trying to prove to others that Brian is a shinning gift. Brian is my twenty-year-old brother. He has patiently taught me about true life realities. Brian has taught me skills you do not learn in the classroom, such as patience, simplicity, and most of all, appreciation. I have learned to appreciate what I otherwise may have taken for granted. I find myself being mindful of the privilege of having the ability to talk and socialize. Brian has shown me to be attentive to the beauty of nature like watching the rain fall; or the waves of the ocean crashing into the surf. 

I have chosen to pursue and complete a college education in the field of communication with a concentration in journalism. This career choice will offer me the opportunity to be a voice for those who are non-verbal; yet have much to communicate. Using my gifts of being verbal and comfortable in a public forum will allow me to raise awareness about the grace and blessing those with autism and other special needs may offer our communities. I want to have the chance to articulate that these individuals are our special teachers, brought here to educate us about the value of difference.

My true adversity….. is the challenge to demonstrate how extraordinary special needs individuals are.”