Special Needs Mom

Alone with Autism, A Cup of Comfort for Parents

  I have met many mothers whose lives are both challenged and enriched by their child who is affected by autism. Although it does not affect my girls, there is a very high incidence of autism related to mitochondrial disease. In honor of Autism Awareness Month, I wanted to share this story of mine that was published in A Cup of Comfort for Parents with Autism. ( Note that feeling more private at the time, I had changed the girls name for national publication.)The stories are inspiring and true, the real, shared  emotions soothing to a parent who may feel alone. This book makes a great gift and will be appreciated by any family living with autism . You can purchase it online at the link above,on  Amazon or it is most often available at your local bookstore. ( This I know as Olivia checks each bookstore we visit!)  

Sara’s First Friend

    The gray sidewalks that border my daughter’s school playground are filled with chalk drawings. Today, the kindergarten chalk artists have yet to begin their detailed daily pastel drawings. As we enter the playground area, my daughter, Samantha, her red ponytails bouncing, runs ahead to place her backpack in line outside her classroom door. Sara, her little sister, slows the quick pace of her walker as she looks down, studying the chalk- filled walkways with interest.

   Finally, as Sarah & I  reach the end of the long sidewalk, we find our place,. Leaning against the wall that parallels the playground, we watch the five- year- olds as they laugh and play, tease and cry, releasing their early morning energy before another day in class.Sara studies her sister from afar. Sara’s eyes reveal nothing. I am tired this morning, as usual, because of Sara’s restlessness throughout the night. Wearing blue jeans, and my favorite Gap T-shirt, I sit “criss-cross applesauce” style, clutching my commuter mug. I drink the hot coffee greedily. mentally double- check my morning routine, worried that I have forgotten something essential for Samantha’s day at school. Worried, as usual, that she has not received her due share of affection, or enough attention because of Sara’s demanding needs. This is my morning routine. Sitting here, staring at my very different daughters, trying to imagine Sara on this playground two years from now, and questioning what our future will be.

   I have mastered the role of being Sara’s advocate. I believe this is inexplicitly entwined with the responsibility of being her mother. I think back for a moment when life was simple, when I was more carefree before my heart began to hurt,before that life-defining moment. I was in the shower, that day, indulging in the extravagant luxury of deep- conditioning my hair. Samantha, then three, came to pound on the glass shower door. She was demanding milk in the “I want it now, Mommy!” typical toddler way. That’s when it clicked; something is wrong with Sara. She was sixteen months old, and not talking, not walking, and not demanding- or even requesting anything. She was much delayed. It took a year to get physicians to pay attention. I flew across the country and sought the care of a special neurologist at the Cleveland Clinic. The primary diagnosis is mitochondrial disease, the secondary neurological diagnosis followed later that year.

    On this early morning, my daughters are separated by twenty feet of sidewalk and ten square feet of playground sand. But I know of the other very real and vast differences that place my daughters’ worlds apart. Although Sara’s physical disability is visible, her neurological issues are not. Sara uses a walker to lend strength to her weakened muscles. There is, however, no crutch or physical aide to help her with her other features. There is no outward sign to tell others that she has a neurological impairment, a different weakness with unique challenges of its own. She experiences anxiety, awkwardness, and behavior challenges, she can be very uncooperative.- these are the things that cause other mothers to look, whisper, and even comment, offering unsolicited advice.

     When the first morning school bell rings, Samantha runs over to us and kisses Sara and me goodbye. a wet sloppy kiss on the mouth for me and a nose rub for Sara. Samantha has learned that Sara prefers this softer, less sensory- offensive gesture of affection. With a quick wave tossed over her shoulder, Samantha runs off to collect her backpack and enter her classroom. Sara stands quietly as she watches her sister walk away. She looks at her feet as she shuffles them repeatedly. I wonder for a moment whether this is how it will always be between them:. Samantha rushing off to experience life, while Sara stays behind.

     Each morning as we stand against this wall, I watch Sara watching Samantha play-and every morning I wish for the same thing. I wish that, someday, Sara will be comfortable in an environment like this . I hope that this exposure to Samantha’s school world will ignite Sara’s interest, light a social spark.

     Sara is blessed to have many “friends” in her life-people outside our home that truly care about her,- want the best for her, and have great confidence in her abilities. There is Robin, Sara’s speech therapist, Atalie, her physical therapist, and Michelle, her occupational therapist. Not only do these “friends” teach her physical skills to strengthen her muscles, they also teach her how to play with toys, initiate social interaction, follow routines, and respond socially in simple situations. Abilities her sister developed naturally, these are skills Sara will have to learn.

     Today, Sara points to the children rushing by us and says “me.” .Surprised and excited, I bend down and look into her face. Eye to eye, I question the meaning of this spontaneous use of language. I am on my knees, waiting patiently for Sara to show me what she meant. I feel a tap on my back, and I turn and stand up to greet our neighbor, Tracy, and her three- year- old little girl, Katie. We all drift toward the parking lot. Katie, is running in circles and humming loudly. For a few minutes, I am lost in simple conversation with Tracy.

  We talk of our husband’s long work hours, recipes for gourmet dinners, and dirty laundry, and I feel as though I am miles away from the complex therapy schedules, vitamin supplements, medical bills, and emotional worry that fill my world. I am a typical mom, just beginning my day. , standing in the school parking lot,. Visiting with a neighbor- carefree.

    Relaxed and preparing to say goodbye, I look down at Sara. She has been walking beside us in her walker, quietly regarding Tracy and Katie. Suddenly, she is leaning against her walker for balance, and Katie is reaching for Sara’s hand, and for a moment Sara lets her hold it. Then, amazingly, she leans toward Katie, and rubs her nose to the tip of hers. An Eskimo kiss; she imitates the kiss goodbye her sister gave her moments ago.

    The sun shines brightly, and I am shielding my eyes from the glare. My fingers form a half fortress wall, protecting the tears that are pooling in my eyes. I feel a warmth in my chest, and I recognize this unfamiliar feeling, is unexpected joy. It leaves me with a sense of contentment, yet I feel strangely energized.In a gesture of celebration and hope, I put my arm around Tracy’s shoulders and pull her into a hug. I lean down and brush Sara’s cheek lightly with my lips. Her rosebud lips offer me a subtle, shy smile. And I know,-that she knows. Sara has found her first friend.

Suzanne Perryman is the publisher of a consumer crafts magazine ., a passionate and advocating mother of two girls, and a community volunteer for Raising Special Kids Arizona. She resides in Scottsdale, Arizona with her husband Bruce, and is also the AZ Chapter President for the United Mitochondrial Disease Foundation.( As published in 2006)

 

Looking at the World Through Rose Colored Glasses

 

 “Sitting on the beach in Maui.” the text message read.  I had just checked my phone. I thought about how to reply to this life long friend. We don’t talk much anymore but we still remain connected. I put my phone down and grabbed the stainless steel mixing bowl I was holding... My reply would read “Sitting on the bathroom floor... Holding O’s vomit bowl !!  Maybe with enough exclamation marks, it would give her a laugh.

 

It’s hard to explain how I feel when friends of mine sympathize saying... “You have your hands full… “Because, really. I don’t. We are blessed.

 

It is true that I am always worrying about energy levels, watching the girls for flushed faces, fevers or just fatigue. Shadowing Zoe to prevent her falls, keeping an eye on her seizures that break through the medicine barrier. It’s true that O’s health issues have progressed, her anxiety, an unpredictable new issue. But really, we are so very lucky.

 

I know a lot about mitochondrial disease now. It was five years ago when an expert doc handed me a packet of info saying “Go home and read this. Clinical cases vary, so please don’t focus on the internet case studies.”

 

Back then, the disease was so newly documented, only the worst cases were published. And yes, I read them. Most were fatal, devastating descriptions about loss of vision, mobility, motor functions and eventually...life. Over the years, that’s why I have been reluctant to tell others where to go on the internet to read more about it. The information is misleading, depending where you go, what you read. Depending on how you look at the world. But here are the facts; it is a progressive disease. There is no treatment or cure. But here are the even more important facts: Every case varies. Patients can have periods of time where their health can stabilize. Managing good health, and avoiding metabolic stress or illness, can delay the progression of the disease. And most of all, none of us have the unconditional promise of tomorrow, no matter how healthy we are today.

 

Over the years, I have come to know other children affected by the disease. Children who have been cherished. Children who have accomplished much. The same children who have eventually lost- and left the lives of the family who loved them.

 

Last week, we saw the local eye doctor who confirmed that Zoe’s retinopathy is slowly progressing. For a moment I stood there thinking about how to make the most of her seeing years, however many there could be 2, 5, 10 years?  Scene after scene flashed through my mind, more painting, more play dough, pink ruffled dresses, more glitter lip gloss- promising myself not to waste a moment. But then the doc moved on and talked about the new glasses she needed. Her vision decreasing and requiring a new pair of enhanced lenses. And with her new glasses she would see even better than she was at that moment- improvement. So with the help of her sister, Zoe selected a snappy new pair of Juicy Couture rose pink colored glasses.

  

Yesterday, we picked them up. I drove home from the appointment smiling, listening to Zoe happily singing along to the radio.. I checked her reflection often from my rear view mirror. She looked pretty and so grown up as she sat looking out the backseat window.. Did she see more today wearing her new glasses, as she looked out the backseat window? How would she feel when someday she saw less..?

 

Her sister was at home with Daddy, napping on the couch, curled up in her favorite blanket . A trip to the doc had procured a medicine for her nausea and she was finally resting comfortably.

 

I felt the flush of warmth within me. For today, we are doing something. Being proactive we can keep them healthy.We are managing. Medicines can make the girls feel better. Glasses can help Zoe see more. We are choosing- to look at the world through rose colored glasses.