Tag Archives: Asperger’s Syndrome

Autism Awareness: One Mother’s Perspective

Once again, we are at the conclusion of autism awareness month. Every April the world is prompted to Light It Up Blue, through a campaign initiated by Autism Speaks to raise international awareness of autism. As a demonstration of solidarity, supporters consumed periwinkle doughnuts, walked in cobalt shoes, and combed sapphire hair.

Throughout the month, many people wear blue as a badge of honor. I applaud their commitment and am moved by their passion. Visions of iconic landmarks across the globe, illuminated in various hues of blue, demonstrate the evolution and vastness of this inspirational quest.

By design I am not an active member of the blue brigade. Certainly, the cause is a noble one, bringing attention to a subject near to my own heart. But for me, this annual commemoration has lost its luster, invoking personal feelings of disappointment and disillusionment.

The harsh reality is that I don’t need to be enlightened about the nuances of autism. My family lives with it every day. Our commitment to autism awareness is not limited to 30 days a year. We are shackled to it for a lifetime. Blue apparel won’t raise my consciousness on an issue perpetually ingrained in my mind.

Instead, educate me about the utilization of millions of dollars raised by major autism not-for-profits annually for research and family services. Despite the efforts and presumably altruistic intentions of these entities, statistics indicate that the number of children diagnosed with autism spectrum disorders continues to rise at an alarming rate. And although these organizations have impressive resumés, their endeavors have little impact on the daily challenges my family encounters.

Research for tomorrow doesn’t help my family today. A colleague’s blue shirt doesn’t administer any direct assistance to my child. A celebrity’s tweet doesn’t provide me any respite. Many of our needs are simple – kindness, compassion, acceptance, and inclusion.

My family is fortunate. Our blessings are abundant. I adore my children. We have found encouragement, comfort, and relief in early intervention providers, inclusive sports programs, academic institutions, and community services found in our backyard, not through a global campaign.

Still there are gaps. Families dealing with the complexities of autism spectrum disorders need more. We need you.

Make a difference in a child’s life. Look for ways to assist a family in your neighborhood. Help facilitate a friendship between your typically developing child and a differently-abled one. It may be as effortless as inviting a child to a play date, birthday party or sleep over. We all want our children to be popular. But I also hope my offspring are benevolent, thoughtful, and tolerant.

Extend your hand or lend an ear to a parent of a child with unique capabilities. He or she may only need a sounding board or someone to share a bottle of wine. You can’t imagine how cathartic a few hours of adult time, away from therapies and social groups, can be.

Consider providing financial assistance to local entities, which are assisting families in your own communities. Volunteer your time working with athletic organizations that cater to the unique attributes of those who find it difficult to assimilate on typical sports teams. Patronize businesses that employ differently-abled individuals. Support universities that make it possible for students with autism spectrum disorders to succeed in college.

You have the capability to directly impact the life of an individual impacted by autism. Try it. I suspect your life will be enriched.

Next April please don’t ask why I’m not adorned in blue. I choose not to wear blue, because a part of my soul will forever be tinted blue.

Privacy Policy: Protecting My Children’s Privacy in the Internet Age

Another privacy policy arrived in the mailbox today. These legal documents, created to ensure our protection, have inundated our populace. They have become commonplace, often unread or discarded. The mass dissemination of these confidentiality disclosures may be desensitizing their own relevance.

As parents, we assume responsibility for the lives of our children. By necessity, infants abdicate all rights to their caregivers instantaneously at birth. Maintaining a child’s privacy is a task no guardian should take lightly.

Parents blog about the adventures of their children. Slideshows chronicling an entire childhood are viewable on Facebook. We tweet about a first tooth on Twitter. Our children’s lives have become open books in a public forum. I wonder, how much exposure is too much?

Social media outlets allow us to share family photos expeditiously. The latest child YouTube sensation is often viewed by millions. Watching a giggling baby or talented toddler brightens the day. These exchanges may innocently expose our children to a global audience.

Preserving our children’s privacy isn’t an easy effort. As the parent of a differently-abled child, it’s an internal conflict, I continuously struggle to reconcile. Do I have the right, morally, to disclose my child’s diagnosis to the world?

When my son, Ben, was originally diagnosed with Asperger’s Syndrome, I spoke about it sparingly. Subconsciously, I hoped Ben would outgrow it. Consciously, I didn’t want Ben to be labeled.

Initially, Ben’s dissimilarities were easy to camouflage. As he matured and entered a mainstream educational institution, Ben’s distinct characteristics were evident. Concealment was no longer an option. Although exposed, Ben was still sheltered within our local community.

Now as an entrepreneur, blogger, and autism advocate, I’ve made the decision to openly discuss Ben. Am I entitled to share his story? Some may argue that it’s our narrative. They would be right. But these parables only encompass a chapter of my life. For Ben, they comprise the entirety of his biography.

Time, and Ben, will determine if I’ve made the correct choices. Parenting is subjective. Even with the greatest intentions, guardians make mistakes. We trust the successes outweigh the failures.

In the meantime, I relish my personification in the history of Ben’s adventures. Hopefully, Ben will appreciate his personage in our family chronicle, as well.

Stage Presence: The Spectacle of Autism

Every year, families of elementary school students are transported to a fantasy world via the annual school play. My son, Ben, has been practicing for weeks in anticipation of his debut as a rain drop in his first grade production of Spring Starts Here.

Ben has been in numerous productions throughout his academic career. In previous years, Ben has been more of a stage prop, than a participant.  As a child with Asperger’s Syndrome, Ben is often overwhelmed by loud noises and excessively stimulated by an audience.

Before every student theatrical creation, my anxiety begins to build. Historically, Ben has always taken the stage with his classmates, but his focus has never been on the show. Ben withdraws into a world of his own. A world I want to see, but I can’t.

On the day of this year’s performance, Ben was excited. I was nervous. As a parent, I always hope for the best. As a realist, I know wishes don’t always come true.

My rain drop bounded on stage enthusiastically. Ben recited every word on cue.  He sang every lyric of “Springtime” with zeal. As he stood on stage, for the first time, Ben seamlessly blended with his peers. My heart swelled with pride.

As the play neared its conclusion, with mere minutes left, Ben began vigorously flapping his hands. He stood in the front row clearly visible to the assemblage.

Tears welled in my eyes. Not because my pride had waned. For forty minutes, Ben had the performance of his lifetime. Unfortunately, no one in the audience will recognize or appreciate the accomplishments Ben displayed throughout the majority of the play. When they look at Ben, they’ll only remember those last few moments.

I’ll never forget this appearance . I know the progress Ben has made. I recall every obstacle he has overcome. If only everyone could see that my rain drop was miscast. Ben is actually a ray of sunshine.

April is National Autism Awareness Month. My desire is that others will learn to look past the unusual ticks and sounds of autism. Although we can’t see inside the world of those afflicted with autism spectrum disorders, we have had glimpses. Allow a child on the autism spectrum into your world. You won’t regret it. Everyone enjoys the sunshine.

Spring Training: Fair or Foul

April is the time of year we begin thinking about spring and summer sports. Nothing can compare to a summer baseball game. Many of my favorite childhood memories are related to baseball and softball. For as long as I can remember, sports have been a part of my life. My mother faithfully brought my sisters and I to watch my father play. If the Yankees or Red Sox were on, we gathered together in the living room to root for our favorite team. As a girl, I played softball in Little League and high school.

Now as a parent, my role is to introduce sports to my sons. The benefits of team sports are undeniable. Being part of a club can provide fun, friends, and discipline. Participating in athletic endeavors can positively influence academics and self-esteem. From the moment my oldest son, Ben, was born, I envisioned him as an athlete.

After Ben was diagnosed with Asperger’s Syndrome, an autism spectrum disorder, ensuring Ben joined community sports had an added sense of necessity. His doctors and therapists stressed the importance of social endeavors for children with Asperger’s Syndrome. Ben’s desire for friends is glaringly apparent; although he doesn’t know the appropriate social cues to initiate friendships

Sports seemed like an ideal opportunity for Ben to engage with his peers. Our local Y offered a basketball biddy ball clinic introducing pre-schoolers to the fundamentals of the game. It was advertised as a fun interactive program for the youngsters in our community, run by a professional coach.

From the moment we stepped in the gym; it was a disaster. Ben spent his time lapping the court. The coach didn’t even acknowledge Ben. I knew immediately, there wasn’t going be any mentoring in this program. After several weeks, unable to contain my fury any longer, I withdrew Ben from the program. Since then, we’ve tried t-ball, soccer, baseball, swimming, and track.

Each year, participating in sports becomes easier and harder. As Ben is maturing, he has more focus and a clearer understanding of the game fundamentals. Each season, his teammates become more aware of the fact Ben is different. Thankfully, Ben doesn’t feel different, not yet.

I know someday, Ben will have questions.  Sadly, my biggest concern isn’t the disdain of  Ben’s peers. I worry about their parents. On every sideline, there is always at least one competitive parent, shouting their critiques for all to hear. I see their disappointment as they watch their child, and mine.

Once again I’m faced with the decision. Do I enroll Ben in sports this season? Do the benefits outweigh the risks? Are the very activities meant to bolster his independence a detriment to his self-esteem?

Have we lost sight of the purpose of sports? Wasn’t the original intent for  children to have fun?

Ben is seven. He has Asperger’s Syndrome. His life will be full of challenges. They shouldn’t begin on the fields of extracurricular sports.

Adult Education: A Bully In Our Midst

My seven-year-old son, Ben, called to me as I was cooking dinner, “Mom, someone’s at our house.”  As I walked to the front window, I heard him gasp, “It’s the naughty boy from the bus, who has been bothering me.”

A week earlier, as we were lying in bed, Ben told me, “two boys are being mean to me and keep ripping my paper.”  I was surprised, because my son rarely initiates a serious conversation. You see, he has Asperger’s Syndrome, a disorder on the autism spectrum.

To most children, a piece of paper has little significance. Ben’s strip of paper is his security blanket, his “stim” of choice. He carries it with him wherever he goes. At bed time, Ben carefully places the paper on the headboard. When he wakes; it’s the first thing he looks for.

I don’t know what transpired on the school bus between the boys. I imagine other children on the bus think Ben is different. He is. Researchers struggle to find answers explaining autism spectrum disorders. I don’t expect a bus full of elementary school children to comprehend why my child is enthralled with a fragment of paper.

Parenting a differently-abled child can be overwhelming. Although I adore my child, sometimes I envy other mothers whose lives seem so much easier than mine. Certainly my parenting responsibilities are more daunting than theirs.

When Ben and I answered the door, John, the boy standing before us, wasn’t quite the bully I imagined. He was small. He looked as if he had been crying for a week. John apologized to Ben.

My chest tightened. I wanted to hug the little boy standing there. He seemed lost, frightened.

Ben was excited. He blurted enthusiastically, “Maybe you could come to my house to play some day. How about Sunday?”

My heart ached, knowing Sunday would never come. Watching this sweet, loving boy unconditionally forgive John, and open his heart to a peer, was almost more than I could bear. It’s possible, my child may never find the friend he so desperately wants.

I felt tears stinging my eyes. I glanced at John’s mother. Tears were in her eyes too. She was gracious and kind. I wondered. Would I have had her courage?  Would I have approached a stranger’s door? Would I have brought my child to apologize, knowing he was scared and uncomfortable, regardless of the lesson?

Sometimes we get lost in our own journey. Parenting is an enormous task, regardless of individual circumstance. It’s especially difficult when a parent dedicates themselves to doing it right. Today reminded me of that. John’s mother taught him something today, but she educated me, as well. She’s a mother who did it right.

Parent: The Role of a Lifetime

Throughout our lives, we each embody numerous roles. Humans juggle many relationships concurrently.  At each stage of development, the significance of these personifications varies. All individuals have defined a relationship hierarchy for themselves, whether consciously or subconsciously. In our earliest years, our kinship lies with our parents. Later we develop friendships and intimate interconnections, which become essential components of our happiness.

As we mature, and become adults, our associations become more complex.  For most parents, having children dramatically alters the landscape of their lives. I was no exception. Prior to parenthood, my primary affiliations were to my parents, husband, and employer. Motherhood shook the core of my relationship pyramid. Instantaneously, upon my first child’s birth, I was overwhelmed with a sense of accountability for this tiny person, my tiny person.

In time, the urgency of infancy wanes.  The innate feeling of parental responsibility does not. I often reflect on the fellowships I’ve been blessed with in my life. I know which role is the most important. My business card title reads, Parent, President. Parent is not simply my title, it’s my greatest contribution, biggest joy, and honored privilege.

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