The 10K race was held at a local park, the scenic course winding its way around the lake like a ribbon. Back in the early days of autism this park, for me, was both a blessing and a curse. Situated halfway between my house and a friend's, the park was the perfect meeting place for an impromptu play date. Our late afternoon get-togethers served as a respite, time out of the house, away from the endless parade of therapists. Connecting with my friend punctuated those dark days with the tiniest speck of light. As much as I treasured our time together, those play dates stung. Watching my friend's children and Annie laugh and play with one another painfully highlighted Kate's deficits, leaving me defeated, without hope.
The first half of the race was a trip down memory lane of sorts, each landmark awakening a scene from a lifetime ago. The playground where Kate spun in endless circles, alone. The swing set where she threw herself to the ground, enraged that Annie occupied the swing on the right side instead of the left. The path where she bolted away from us, screaming at the top of her lungs. The spot at the edge of the lake where we threw rocks, Kate wading in the frigid water, oblivious. And finally, the bridge Kate attempted to scale only to be pulled to safety in the nick of time.
As I crossed the bridge I picked up my pace, leaving those memories behind. I rounded the bend into an area of the park I had never seen before. My legs burned as I made my way through this uncharted territory. With no memories attached to this path, I couldn't help but feel that we are on a new course, an opportunity for new memories, for new beginnings.
Showing posts with label acceptance. Show all posts
Showing posts with label acceptance. Show all posts
11.04.2008
3.04.2008
The Things I See
She bursts into the dance studio and sings at the top of her lungs, "Hi, Miss Teresa!" She only hears Miss Teresa's words, "Hi, Kate. Put your bag down and get in line." What she doesn't hear is the less-than-enthused tone of the reply, the annoyance in her voice.
But I do.
She needs to be reminded several times to pay attention, follow directions, stay with the group. She doesn't see the exasperated look on the teacher's face.
But I do.
She shows a coveted toy to the group during sharing time. Her words come out disjointed, fragmented. The teacher feigns interest and asks her a question she does not know how to answer. She doesn't see the look of disdain on the teacher's face.
But I do.
She patiently waits her turn to try a new step across the floor. She does it wrong, the entire way. She doesn't notice that the teacher doesn't bother to help her.
But I do.
She is the last one to emerge from the room, no doubt because the contents of her bag must be arranged in a particular order. She doesn't see the impatience in the teacher's hurried movements as she quickly brushes past her.
But I do.
And I wish I didn't.
But I do.
She needs to be reminded several times to pay attention, follow directions, stay with the group. She doesn't see the exasperated look on the teacher's face.
But I do.
She shows a coveted toy to the group during sharing time. Her words come out disjointed, fragmented. The teacher feigns interest and asks her a question she does not know how to answer. She doesn't see the look of disdain on the teacher's face.
But I do.
She patiently waits her turn to try a new step across the floor. She does it wrong, the entire way. She doesn't notice that the teacher doesn't bother to help her.
But I do.
She is the last one to emerge from the room, no doubt because the contents of her bag must be arranged in a particular order. She doesn't see the impatience in the teacher's hurried movements as she quickly brushes past her.
But I do.
And I wish I didn't.
1.14.2008
A Walk Toward Hope
Below is something I wrote over a year ago. I had planned to submit it in hopes that it would be included in this book. I chickened out. So now I am sharing it with all of you.
I will never forget the first time I heard the word autism and Kate spoken together in the same sentence. Those life-altering words were a punch in the gut, changing nothing, everything. Gone were the frilly fantasies of a childhood filled with giggling little girlfriends staying up all night at a sleep-over. Gone were the dreams of an all-star athlete, award-winning scholar, and class president. Such hopes and dreams were replaced with an exhausting array of therapies and appointments, support group meetings, behavior modification that never seemed to work, and a small mountain of paperwork stamped with the word autism, as if sealing the fate of life ahead.
When Kate was a baby, she could light up a room. Her musical laugh announced her arrival as her twinkling blue eyes scanned the room, eager to explore the marvels of the world. She was a charming baby who could captivate anyone with those eyes and that sweet smile. Kate sparkled and exuded life.
Then came what we thought were the terrible two’s. Tantrums, screaming at people, throwing herself on the ground, rigid routines, quirky obsessions. By age two-and-a-half it appeared that Kate’s terrible two’s had lasted longer than expected, and we decided to seek help.
Around the time of the diagnosis, my husband’s sister asked if Kate would participate in her wedding as the flower girl. Although I knew that Kate bouncing down the aisle in a quiet church in front of a few hundred family members in a fluffy dress and new shoes was a recipe for disaster, I accepted the invitation as my way of trying to hold onto a tiny shred of a typical childhood.
Over the next few months, flower girl practice consumed me. Each Sunday we drove a half hour to attend Mass at the church where the wedding would take place. During church we fed Kate an endless supply of praise and goodies for sitting quietly. After Mass we practiced walking, not bouncing, down the aisle. We took pictures of the church and wrote a social story about being a flower girl. That story became a bedtime favorite. We paraded around our house in the fancy dress and stiff new shoes, laughing at the tappity-tap sound they made on the kitchen floor.
The day of the wedding arrived with my stomach churning in anticipation. Would all of our practice finally pay off, or was my sister-in-law’s perfect day going to be ruined? Part of me just wanted to grab Kate, poofy dress and all, throw her in the car and drive away from everything and everybody.
Moments before it was time to begin the processional Kate was sprawled out on the floor, a mound of white tulle and curls. Rolling a toy car across the floor, back and forth, she clearly did not wish to be disturbed. Each attempt to get her to stand up was met with an increasingly louder scream that showed her displeasure.
The processional began, and Kate showed no signs of any desire to participate. One by one the bridesmaids glided down the aisle. Panicking, I told the ring bearer to walk without the flower girl. It wasn’t going to work.
In one final attempt, I gently picked Kate up and whispered calmly in her ear, "Kate, do you want Mommy to carry you or do you want to walk?" My sweet little flower girl looked into my eyes and said in a slow and halting voice, "Walk with Mommy." As she raised her dimpled, chubby hand toward mine, she gave me a shy smile. I grinned from ear to ear, took her hand in mine, and we began our journey together.
As I floated down the aisle with my beautiful daughter I said two prayers to God. The first was a prayer of thanks for giving us that perfect moment. The second was a prayer of hope that some day, some day, my husband would be given the same gift of walking Kate down the aisle.
That magical afternoon we walked together. We walked toward hope and acceptance. We walked toward the future, together.
I will never forget the first time I heard the word autism and Kate spoken together in the same sentence. Those life-altering words were a punch in the gut, changing nothing, everything. Gone were the frilly fantasies of a childhood filled with giggling little girlfriends staying up all night at a sleep-over. Gone were the dreams of an all-star athlete, award-winning scholar, and class president. Such hopes and dreams were replaced with an exhausting array of therapies and appointments, support group meetings, behavior modification that never seemed to work, and a small mountain of paperwork stamped with the word autism, as if sealing the fate of life ahead.
When Kate was a baby, she could light up a room. Her musical laugh announced her arrival as her twinkling blue eyes scanned the room, eager to explore the marvels of the world. She was a charming baby who could captivate anyone with those eyes and that sweet smile. Kate sparkled and exuded life.
Then came what we thought were the terrible two’s. Tantrums, screaming at people, throwing herself on the ground, rigid routines, quirky obsessions. By age two-and-a-half it appeared that Kate’s terrible two’s had lasted longer than expected, and we decided to seek help.
Around the time of the diagnosis, my husband’s sister asked if Kate would participate in her wedding as the flower girl. Although I knew that Kate bouncing down the aisle in a quiet church in front of a few hundred family members in a fluffy dress and new shoes was a recipe for disaster, I accepted the invitation as my way of trying to hold onto a tiny shred of a typical childhood.
Over the next few months, flower girl practice consumed me. Each Sunday we drove a half hour to attend Mass at the church where the wedding would take place. During church we fed Kate an endless supply of praise and goodies for sitting quietly. After Mass we practiced walking, not bouncing, down the aisle. We took pictures of the church and wrote a social story about being a flower girl. That story became a bedtime favorite. We paraded around our house in the fancy dress and stiff new shoes, laughing at the tappity-tap sound they made on the kitchen floor.
The day of the wedding arrived with my stomach churning in anticipation. Would all of our practice finally pay off, or was my sister-in-law’s perfect day going to be ruined? Part of me just wanted to grab Kate, poofy dress and all, throw her in the car and drive away from everything and everybody.
Moments before it was time to begin the processional Kate was sprawled out on the floor, a mound of white tulle and curls. Rolling a toy car across the floor, back and forth, she clearly did not wish to be disturbed. Each attempt to get her to stand up was met with an increasingly louder scream that showed her displeasure.
The processional began, and Kate showed no signs of any desire to participate. One by one the bridesmaids glided down the aisle. Panicking, I told the ring bearer to walk without the flower girl. It wasn’t going to work.
In one final attempt, I gently picked Kate up and whispered calmly in her ear, "Kate, do you want Mommy to carry you or do you want to walk?" My sweet little flower girl looked into my eyes and said in a slow and halting voice, "Walk with Mommy." As she raised her dimpled, chubby hand toward mine, she gave me a shy smile. I grinned from ear to ear, took her hand in mine, and we began our journey together.
As I floated down the aisle with my beautiful daughter I said two prayers to God. The first was a prayer of thanks for giving us that perfect moment. The second was a prayer of hope that some day, some day, my husband would be given the same gift of walking Kate down the aisle.
That magical afternoon we walked together. We walked toward hope and acceptance. We walked toward the future, together.
9.10.2007
Not Welcome
"We don't deal with kids with IEPs," the new Pre-Kindergarten teacher was told. "Once the evaluation report is complete, he will be asked to leave," explained the principal of a small Catholic school in a small community not far from ours. The little boy is "just like Kate", meaning he has a mild form of autism.
Oh. My. I could say nothing, paralyzed by confusion and sadness and anger. And so those words swirled around in my head last night. And all day today. Those words came to rest on my heart, leaving behind a heavy ache.
If I had the words, this is what I would have said to that new teacher: You will love having this little boy in your classroom. He needs structure. He needs understanding. Take the time to know him. Each interaction makes a deeper connection. He is a visual learner. Teach him through pictures. Have a picture schedule for him and review it with him each morning. Warn him in advance of transitions. Expand his play. Engage him by being silly. Provide him with lots of opportunities to interact with his peers. Show him how. Have a quiet spot in the room filled with lots of fidget toys and pillows and lotion and soft music in case he gets overwhelmed and needs to regroup. He is a really neat kid. Take the time to look at life through his eyes. It really is beautiful. Oh please, just give him a chance. Please, please, make this work. Take care of this gentle soul.
If I had the words, this is what I would have said to the principal: This little boy is a child, not a label. He likes to run and play and laugh just like any other child. He is different, not broken. It is your school and your ignorance that need to be fixed, not him. He is a child, not something to be discarded because he is deemed to be unworthy. You owe it to him and to yourself to make this work. He is a part of this community, just like you and me. His strengths and uniqueness cannot be expressed in the confines of a fifteen page document. Help him and he will show you the beauty of life.
Our children are here for a reason. They are here to teach others about tolerance, about acceptance, about unconditional love.
Oh. My. I could say nothing, paralyzed by confusion and sadness and anger. And so those words swirled around in my head last night. And all day today. Those words came to rest on my heart, leaving behind a heavy ache.
If I had the words, this is what I would have said to that new teacher: You will love having this little boy in your classroom. He needs structure. He needs understanding. Take the time to know him. Each interaction makes a deeper connection. He is a visual learner. Teach him through pictures. Have a picture schedule for him and review it with him each morning. Warn him in advance of transitions. Expand his play. Engage him by being silly. Provide him with lots of opportunities to interact with his peers. Show him how. Have a quiet spot in the room filled with lots of fidget toys and pillows and lotion and soft music in case he gets overwhelmed and needs to regroup. He is a really neat kid. Take the time to look at life through his eyes. It really is beautiful. Oh please, just give him a chance. Please, please, make this work. Take care of this gentle soul.
If I had the words, this is what I would have said to the principal: This little boy is a child, not a label. He likes to run and play and laugh just like any other child. He is different, not broken. It is your school and your ignorance that need to be fixed, not him. He is a child, not something to be discarded because he is deemed to be unworthy. You owe it to him and to yourself to make this work. He is a part of this community, just like you and me. His strengths and uniqueness cannot be expressed in the confines of a fifteen page document. Help him and he will show you the beauty of life.
Our children are here for a reason. They are here to teach others about tolerance, about acceptance, about unconditional love.
Subscribe to:
Posts (Atom)
