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In Their Own Words – A Moment in the Sun

January 19, 2012 11 comments

This ‘In Their Own Words’ is by J. Lorraine Martin. She digs deep through laughter and tears in her personal blog on life and motherhood at http://cheeselesspizza.blogspot.com.  She is the mother to three children, one of whom has autism.  She is a writer, graduate student, volunteer/mentor in the autism and refugee/immigrant communities.  

I’m standing on a tennis court in my neighborhood.

Despite trees baring no leaves, the weather belies the time of year as the sun warms our exposed arms.  I have an unlikely tennis partner by my side:  my 17-year-old autistic son. This was his idea today.  A breeze tickles through our hair, birds on a Southerly journey pause to sing, as if for us.

My other son–an avid tennis player capable of sending balls at a fast pace swooshing right by me before my eyes can barely register it–stands on the other side of the court, playing left handed so as to ease the pace of the game and give us a fighting chance.

We have playful rallies.  We work on helping my oldest son by my side call out “mine” or “yours.”  We laugh over mishits, and occasionally my youngest son can’t help creaming a ball at me.  I can’t help trying to return it with equal power, most often hitting the net and hoping I don’t tax my old lady joints too badly.

I ponder the present moment. I am playing tennis with both of my boys. No one is rushing the moment.  No one is embarrassed. No one is anxious.  There are no “scenes.”  My oldest son, who usually surveys his surroundings on heightened guard, seems like that layer of self protectiveness is not required on this day.  He has stepped outside, something he doesn’t do much in our neighborhood, as he prefers the security and comfort of home. Yet on this day he is standing calmly and happily in the sunshine by his own initiative.

My husband, our dutiful ball boy and resident coach, asks our oldest son:  “Why are you smiling so much?”

He answers,  “Because I’m so happy.”

We hit some more.  I feel comfortably wrapped in gratitude and joy.  At the end of our playing time, I hug each son for different reasons; heroes to me in their own unique way.

As my husband and youngest son want to play longer, I ask my oldest son if he would like to walk around to see the other courts, playground and pool closed for the winter.  Normally, he would want to leave and go back home to what feels most comfortable. On this day, he says, “Let’s walk.” And we do.  Strolling, peacefully taking in the view. We end our walk, viewing my husband and other son playing some more, as we stand on a higher platform looking down at them.

And then expectations begin to seep in.  “Maybe you might like to come up to the high school to watch your brother play sometime.”  “Well, maybe,” he answers.  I imagine him sitting in the stands with us; my heart yearns and hopes.  I then bring up that his yoga class will be resuming now that the holiday break is over.  An intruding bit of anxiety hits my son, “I’m not sure if I want to go back to yoga, Mom.”  He is recalling that the instructor had coughed the last time and how that bothered him.  I find myself wanting to say some sort of validating thought coupled with some problem solving advice as I feel yoga is good for my son to cultivate self-awareness and inner calm.  I don’t want him to discount all he loves about a person simply because they coughed as he sometimes tends to do.  I find a bit of sadness creeping into my heart.

And then I suddenly feel quite aware of myself.  Why am I clouding such a perfect moment—the calm and peaceful present—with expectations about the future?  Why would I allow such intrusions?  I switch back to what matters most:  this moment I’ve been given.

The sun.  The breeze gently whispering.  The crisp sound of my youngest son’s racket making contact with a ball as he plays tennis with his dad. My oldest son by my side, entirely calm, having just happily played tennis and taking a leisurely stroll with me.

He then puts his hand up for a minute to gesture for me to pause.  “Listen, Mom to the birds.”  And we stand together and hear their song.

He adds, “I feel so good inside.”  My boy’s song amongst the birds.  A mother’s spirit aloft and soaring.

We stand side by side gripping the iron rails of a fence, looking down at my husband and youngest son playing tennis. My emotions flow forth.  “Oh, Mom is crying,” my husband says with a smile on his face as he looks toward me with understanding.  My son by my side looks at me and offers, “Mom cries when she’s happy, but I only cry when I’m sad.”   My husband replies, “Why do you think she does that?”  He says, “Because she is proud of me.”

In Their Own Words – I Want to Have a Party!

July 14, 2010 19 comments

This “In Their Own Words” essay was submitted by Edwinna McHale, who has a son with autism.

My son asked a question today! But, you might ask, why is that such a big deal?  Every three year old asks questions, don’t they?  They just drive you nuts with questions, don’t they?

Of course they do, but my child is 13. Never before today had he asked a question just to get information. Not, at least, without a monumental amount of effort, prompting and scripting. Today, as we were repeatedly circling the parking lot trying to find a space close enough to the clinic door, with the irritation that can only be a boy of 13 who has lost patience, he asked me “Why are we driving around in circles?”

And now I want to have a party!  When you walk the autism road, you celebrate the smallest accomplishments. Sometimes, they are the only kind of accomplishments you have to celebrate.

Tommy learned early on, how to ask questions to get things he wants – like asking for food.  But, most three-year-olds start to look for information. Why do things work this way? Who is that person? Where are they going? When will we get there? What are you doing? Until today, the only spontaneous questions my son has ever asked was when he wants something. “Mom, may I have a Diet Coke, please?”  “Mom, can we go to McDonald’s, please?” But never, before today, has he asked a question in order to obtain information. And never before today, has he actually listened to any answer more complex than “Yes” or “No.”

When he was four, I wondered if I ever would hear him tell me “I love you, Mommy.” I never did. When he was six, I would say, “I love you, Tommy.” And he would answer “Me, too.” But it was not until about three years ago, that he spontaneously said “I love you, Mom” for the first time in his life. He was already too old to be willing to call me ‘Mommy” but he could, at long last, tell me that he loves me!  I wanted to have a party then, too.

We wanted to have a party when he was five and got dressed by himself for the first time. When he was six and a half and was able to pick out a complete outfit for school the next day. When he was eight, and he could tell me “My tummy feels sick.” Such small things, really.  Most parents take them for granted.  It’s just a natural part of growing up, and all kids do it, right?

But for a child with autism, even learning how to look at a friend, smile, and say “Hi!” is a process that can take years. And suddenly, one day, without any warning, HE DOES IT! And we want to celebrate. People ask me why such small things warrant a celebration. I tell them that they will never know how hard it was to get here, but the fact that the journey was hard is reason enough to celebrate when we get here.

I am thankful that my child has taught me to appreciate and celebrate the small victories, and to truly understand how monumental those small victories really are.

So, my son asked a question today, and I want to have a PARTY!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – Focusing on the “Cans”

June 27, 2010 6 comments

This “In Their Own Words” essay was submitted by Teresa Greenwood of Hays, Kansas, who has a daughter with autism.

This was my first celebration of World Autism Awareness Day. A year ago I didn’t know that April 2 was anything other than another day on the calendar.

Did I ever think about autism before my two-year-old daughter was diagnosed – no. Sure, I’d heard of it, and I sympathized with families that “had to deal” with a child with a disability. I did not know anyone with a child with autism, however. And I never would have thought it would affect my family, but it has.

Morgan’s diagnosis, and her progress since then, has changed my life for the better. I have more patience than ever before, and more understanding that we have to cherish every blessing we have. I am blessed to have Morgan in my life, and I would not change her in any way. Also, I am blessed with three other children who love their sister and embrace her diagnosis.

Of course, I grieve for the child she could have been without autism, but I also recognize the amazing child she is with it. When I drop her off at daycare and another two year old says “Hi, what’s your name?” I am reminded that Morgan only occasionally says “Momma” and mostly babbles without words. I know that she may never be fully verbal and will probably be in special education classes in school. The odds are she will never live independently. When she becomes excited or upset she will flap her arms uncontrollably. She easily becomes overwhelmed to where she has to drop to her knees and suck on her fingers. She is an extremely picky eater, like most people who have autism, and she has trouble sleeping at times. But I do not dwell on the “can’ts” and the “nevers.” I focus on the “cans.”

Morgan transformed from completely nonverbal with little eye contact to a bright child who babbles constantly. She will hold a pig and say “oink oink.” She will hold a cow and say “mooooo.” She also has a sheep, which says “baaaa.” She holds these animals to a toy hay bale to make them eat. She now waves bye-bye on occassion, and she has used some of the sign language she has learned. She will make a spider sign when she wants to sing “Itsy bitsy spider.” And she will pull her sisters’ hair if they get too close. She will run to her daddy when it is time to pray, and she will come crawl in bed with us in the middle of the night.

Morgan thrives in her therapy and learns quickly. And I can’t thank her therapists enough for taking the time to work with her, to help her become the person she was meant to be. Early intervention is key to successfully living with autism, and Morgan was fortunate enough to be able to experience that.

I watched a video of a speech by Temple Grandin, who has her doctorate’s degree and is a published author … and who also has autism. HBO recently made a movie about her, which I have yet to see. Watching the real Temple give a speech about her life with autism – and her successes since her diagnosis – gives me such hope that there is a place in this world for my daughter’s beautiful mind.

I sympathize with the people glaring at us in church because Morgan is holding her toy cow in the air and yelling “moooooo!” But I am not sorry, because to me there is not a more beautiful sound in the world than my autistic daughter finally finding her voice and saying words. Even if it’s barnyard talk.

On World Autism Awareness Day,  remember autism, and the millions of families affected by this spectrum disorder. Research is continuing so that hopefully, someday, more can be understood about this mystifying disabiliity. Until then, I will continue to grin at my daughter while she talks to her farm animals, being extremely proud of all she has accomplished at such a young age.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Awe, Autism

June 22, 2010 7 comments

We recently received this e-mail from a parent:
My son was diagnosed with PDD-NOS at the age of two and a half. He’s had years of Skills Trainers and Autism Consultants who have helped him navigate his world. He’s fully mainstreamed in a public school here in Hawaii (he’s in the seventh grade) and is doing exceptionally well (scoring A’s in his Advanced Placement math, etc.) Although his autism diagnosis is his “Big Secret” which he shares with a very select group of people, his English teacher encouraged him to write about his struggles for his English paper (she promised she wouldn’t share it with the class). I wanted to share this story with the autism community because it can perhaps give others some perspective and inspiration with respect to their struggles.

Have you ever had a challenge that you had to overcome, but you did not want anybody to know about it?  Hi, I am (name redacted), and I have been dealing with this challenge for as long as I ever lived. I was born with a disability called autism. Yes, I seem like I am functioning regularly in society, but appearances can actually be deceiving. I will explain later what autism is, how I dealt with this and what I have learned from this experience. Come and explore my deep secret of my life.

First, I will tell you the many things I experienced while I had autism. I sometimes had a hard time in school. I was disorganized and I also sometimes couldn’t focus when I was young. I had a hard childhood and this struggle for my “survival” was hard to overcome.  I sometimes ask my mom, “Why me? Why did God choose me to lack what other people have?”  I felt like I was an alien in school and was I thought I was very different from other people. I felt so discouraged that I ran away from home and ran as fast as I could. I brought clothes, a toothbrush and toothpaste, money to survive and I also wrote a note to tell my mom that I was leaving. I finally came home within four hours of running away from home.

In addition, I will tell you how I solved this dilemma. I try to think positive and try hard in making friends, which was hard for me to do. I was actually good at the academics, but I was (and am still) struggling with planning and applying my strategies to the real world. There were many people out there to help me and I do give them credit to all of their accomplishments. I tried to follow their advice and sometimes failed, but yes they did help me out. I also stay on a special diet so that I can concentrate more. I find it does help.

Next, I shall tell you what I learned from this experience. I learned that I am not an alien and am normal. In fact, I think that this is actually a good experience. I am more grateful to what I can do. I had things that I could not do that other people could do, but now I can do those things, which I do not take in vain. I also finally learned that I have the strength inside of me to overcome challenges. Now, when I do face challenges like this, I can know inside that “I AM AN OVERCOMER!”

Overall, I have reflected on this challenge and I feel good that I could face this challenge and almost beat it. However, I am still facing with this challenge of autism. So far, I am doing well and I think that I have gone farther than I have ever thought I could go. This is a message to all of you: whatever challenge you are facing, find the real problem and solve the real problem. Believe in yourself and have inner strength to fight the problem if it’s physically or mentally.

This “In Their Own Words” essay is written by a seventh grade student in Hawaii and was submitted by his mother.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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