“My sister has special needs—
and my dad has special knees.”
Reprinted by permission of Jonny Hawkins. ©2007 Jonny Hawkins.
Seeing Through Josh’s Eyes
Forget past mistakes. Forget failures. Forget everything except what you’re going to do now and do it.
William Durant
After years of doctors, counselors, and visits to the school, the word “bipolar” should have been a relief. My thirteen-year-old son had always been different and unusual, but the problems had escalated. Even if it was my fault, as one doctor told me, our family and my son needed help, and we weren’t getting it. Not until now. The words hung in the air, and I swear I could touch them— they were so heavy and dense.
Josh sat with my husband and me as the doctor told us what bipolar disorder is, described the symptoms, and outlined the line of treatment that was needed. But all I remember hearing were two words—bipolar disorder.
After our meeting, my son and husband were picking up some literature and filling out paperwork, so I offered to go warm up the car. There was snow on the ground. I remember feeling like my whole life was in a frozen picture. I couldn’t think; I couldn’t breathe; I couldn’t cry. I was numb.
At that very moment, my husband and son jumped into the car, and I remember looking into the rearview mirror and seeing my son grinning from ear to ear. He jumped into the seat and said, “Mom, let’s go celebrate.”
At that very moment, I knew that my son was in the middle of what the doctor had described as a “manic episode.” Why else would he say something so ludicrous?
As calmly as I could, I turned to him and said, “Son, I’d love to go celebrate, but what exactly are we celebrating?”
And with the most sincere voice I have ever heard, he looked me in the eye and said, “Don’t you get it, Mom? We’re celebrating because I am sick. I’m not evil.”
It was in that moment that I realized it was time for me to start seeing things the way my son did. I thought we had been striving for normality, but all along he had been fighting for his soul.
Deborah Rose
Deborah Rose is a private investigator, spending her free time advocating for people with mental illness. She is heavily involved with the NAMI (National Alliance on Mental Illness) Texas as an educator and stigma buster. Deborah enjoys reading, writing, debating, and eBaying. Full-time writing is next on her agenda. Joshua is now a twenty-two-year-old college graduate with a degree in business management and marketing, working as a case manager for the Salvation Army while working toward his master’s degree in business. He is also working on a documentary that focuses on the shared problems of teens and young adults, whether they have mental illness or not. Please e-mail Deborah at
[email protected] The Voice of Reason Wears
SpongeBob Underpants
In the book of life, the answers are not in the back.
Charlie Brown
“Oh, my child will never behave like that in public,” I remember smugly telling a friend over lunch one day. “I simply won’t allow it.” Seven months pregnant with my first baby, I watched in horror as a preschool-aged girl screamed, kicked, and flailed while her humiliated mother tried to drag her away from the play area and out the door.
“I tell you, I’ll never let a three-year-old run my life!” I smirked as we got back to our discussion of nursery themes.
Looking back, I seemed to have all the answers regarding child rearing before I ever had one of my own: when and what they should eat, the proper cartoons to watch, which toys they should be playing with, the best way to potty-train. If it concerned children, this expectant mother had an opinion about all the “right” ways to do things, and shame on anyone who disagreed!
So sure was I that badly behaved children were the direct result of bad parenting that nothing short of a whack over the head could have convinced me otherwise. And, as karma would have it, that whack occurred late one night in June 2003 in the form of a four-pound, nine-ounce screeching baby boy.
Difficult from the beginning, little Antoine was determined to put our fledgling parenting skills to the test. I was committed to nursing him, but he refused to latch on. Gastrointestinal problems meant that the milk I spent so much time pumping almost always came back up. He screamed, sometimes for hours on end, for no apparent reason. He stared, not at us, but at a bright light on the ceiling. And the child never ever slept, which meant, of course, that neither did we.
As time went on, his behavior became even more challenging, and sometime around his first birthday we stopped taking him to public places altogether unless we simply had no other choice. His unpredictability and his “nuclear meltdowns” in the supermarket, for example, more often than not had me terrified that one of my fellow shoppers would summon the police.
Gone were the days of enjoying restaurant meals as a family, as even a fast-food experience with Antoine was likely to deteriorate into a chaotic scene. In fact, a trip outside our home for any reason typically meant enduring finger-pointing, cold stares, and rude comments from perfect strangers as Antoine, oblivious to his surroundings, carried on as though he were being prodded with hot pokers.
“Can’t you control your child?” “Ma’am, if he doesn’t quiet down, I’m going to have to ask you to leave,” “Spoiled brat,” or “Give him to me for a few days, I’ll straighten him out!” came my way so often that I began to categorize my days by the number of insults I received from people who knew absolutely nothing about me or my child.
Worst of all was the “advice” we received from friends and family whenever we attempted to voice our concerns that something wasn’t quite right with our little boy. Some tried to reassure us, claiming that perhaps the “terrible twos” had set in a bit early, that tantrums were normal, and that he’d settle down once he got older. “He’s just all boy,” some said. Others gently pointed out that he would behave better if we could simply learn to show him “who’s boss,” while still others were competitive: “Oh, you think he’s bad, you should see my Brian.”
How on Earth could we possibly explain what it was like to live with this whirling dervish, this Tasmanian devil of a boy to people who clearly thought that children came in a one-size-fits-all model? And who was to say that they weren’t right? As first-time parents, what did we know? After all, no one had ever told us that raising kids was easy.
What we did know was that the level of stress in our household (already at an incomprehensible high from trying to meet the day-to-day needs of a child who alternated between ramming his head into the armoire and spending hours at a time lining his toy cars into neat little rows) was made even higher by the large amount of seemingly thoughtless commentary we received, no matter which way we turned. Indeed, it was commentary of the very type I had made myself once upon a time.
When Antoine’s diagnosis of autism was eventually confirmed, we—like most parents confronted with the disorder—were devastated. At the same time, the sense of relief was profound. Knowing that there was a reason behind our child’s erratic behavior and that we weren’t crazy after all gave us the strength to go on when it seemed like our whole world was falling apart.
These days, Antoine has more good days than bad. At three and a half, he is the light of my life and has taught me more about myself than I could have imagined possible. He still does not make transitions well, and, though fewer and farther between, his meltdowns can still be considered “nuclear” by anyone’s standards. That much has not changed.
What has changed is my own ability to empathize, to put myself into the shoes of another. Never again will I be so quick to make judgments. These days, thanks to knowing and loving my amazing little boy, if I say anything at all, it is this: How can I help?
Shari Youngblood
Shari Youngblood received her B.A. in cultural anthropology and M.A. in sociology from the University of Florida. Proceeds from her ASD-centered merchandise (www.cafepress.com/madwhirl) go toward auti
sm research, and her forthcoming book, Imbecile, concerns raising an autistic child in France. Currently, Antoine can usually be found keeping his mother in line, as happened recently at the local supermarket. Upon sensing that Shari wanted to ram a rude customer’s shopping cart with her own, a slow shaking of Antoine’s head and a solemn “No, Mama” nipped her recalcitrant behavior in the bud. E-mail her at shari.young
[email protected] “I feel a tantrum coming on.
You better start thinking up some excuses for it.”
Reprinted by permission of Jean Sorensen and Cartoon Resources. ©2005 Cartoon Resources.
One Mother to Another
Our lives begin to end the day we become silent about things that matter.
Martin Luther King, Jr.
See the little girl, who stands out most
and has troubles following suit,
who forgets a lot, and talks out of turn
and to others doesn’t seem very cute.
“She’s disruptive” . . . “Doesn’t listen,”
“Shouldn’t be with all the rest,”
You see it . . . we hear it,
“She holds your son back from his best.”
We see your looks of disapproval
through eyes that have never seen,
the struggles that we face each day,
the place where she has been.
We hear you talk . . . those things you say,
though you fail to really listen,
to the voice whose words seem disregarded
“Our star,” who to us, does glisten.
She comes home after school, to laugh and play
with her sister and baby brother,
she’s tucked in at night, with a hug and a kiss
just the same as any other.
She wakes each morn, with a yawn and a stretch
and wonders of each new day,
what things she’ll see, what things she’ll do
in her world . . . in her own way.
She puts her shoes on, one at a time
and kisses me good-bye,
to stand in “the group” next to your little one,
Who draws away, her wondering why.
She’s young right now, and sees the “good”
although in time, that’s bound to change,
she may hear those words and see those looks
that will make her “feel”—but strange.
If I could make a wish tonight,
I’d wish to make it right,
not for a different or shinier star,
just that ours would forever “feel” bright.
To that little girl, who stands out most
and has troubles following suit,
who forgets a lot, and talks out of turn
“We love you . . . you are you . . . and you are cute!”
Donna Turenne
Donna Turenne is, first and foremost, a mother of three beautiful children (Camille, Caslyn, and Landon). Married to the love of her life, Donald, she is a practicing registered nurse in Chilliwack, British Columbia. Her stories are inspired by her family’s strength and God’s love expressed in living with a child who has special needs. Donna dedicates her story to Caslyn and Landon, Camille’s true guardian angels on Earth. Please e-mail Donna at
[email protected] Reaching Back
Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see it is what you would have wanted had you known.
Garrison Keillor
When my son Evan was born, and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes, my heart was broken, and I was overcome with sadness for both my children.
Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn. I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I will always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son’s life. They continue, still looking forward, always reaching back to help others.
I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. “It’s not like that. Please don’t lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true.” I know she has to sit there crying, and I don’t know how long. I will wait with her and be a friend.
Evan will be six years old in a month. His sister, Zoë, is seven and a half. When they are not arguing ferociously or ignoring one another, as siblings do, they are the best of friends. They help one another scheme, and protect each other from harm. Both have argued seriously about how life for the whole family would be better if the other disappeared, leaving an “only child.” Each misses the other when they are separated overnight. I rarely think about the sister and brother walking toward the nursery viewing window, but sometimes when I see my two walking hand in hand down the beach or up a hiking trail, I think of the poor, sad woman I was that day.
I can’t imagine life without my son. Sometimes, when he barrels into my bedroom early Saturday morning to tell me a great cartoon is on, I wonder what life would be like without little boys. But I get up and find he has quite good taste in cartoons. I think of him in his preschool days, chin raised in pride over some fabulous work of art, like the turkey he pasted up when he was three. I remember him seeing his good buddy from class, Terrell, at a school carnival, and how their eyes met. They squealed in unison and ran to each other like sweethearts in a perfume commercial. I enjoy the story his teacher relayed to me about how, during a cookie-baking class, he slyly nibbled his chocolate chips instead of saving them for the cookie. I am glad every day to have this son. The world is a better place with him in it.
Evan is not a Down syndrome “superstar,” but I wanted him to have the experience of a regular kindergarten. He loves school and has a wonderful teacher. His classmates are charming and funny and bright. But I was afraid of their parents. Evan has missed some fine opportunities because many people are as inexperienced and uninformed as I was six years ago.
I believe Evan needs an edge before he can participate successfully in mainstream activities, and that edge is casual acceptance. Last night was parent night at my son’s kindergarten class. I was overwhelmed by the relaxed but purposeful way different parents let me know that they accept my son simply as a child in the kindergarten class. Their hands reach back to comfort the heartbroken woman in the hospital corridor. They comfort her in ways that I cannot. I thank every person who has brought us all this far. Thank you so much.
Pam Wilson
Pamela Wilson graduated from UC Berkeley in preparation for work and starting a family. Her children and those she met through special programs and mainstream activities continue to inspire her to advocate for opportunities, support, and encouragement for every child and family. Visit her website or contact her through www.specialneedschildren.bellaonline.com.
A Reason to Celebrate
The soul would have no rainbow if the eyes had no tears.
Native American Proverb
Numbly, I left my husband, Marty, at the hospital where I had been visiting two of my ch
ildren and headed for the grocery store. Since it was 11:00 PM, I drove to the only store I knew was open twenty-four hours a day. I turned my car motor off and rested my head against the seat.
What a day, I thought to myself. With two of my young children in the hospital, and a third waiting at Grandma’s, I was truly spread thin. Today I had actually passed the infant CPR exam required before I could take eight-week-old Joel home from the hospital. Would I remember how to perform CPR in a moment of crisis? A cold chill ran down my spine as I debated my answer.
Exhausted, I reached for my grocery list, which resembled a scientific equation rather than the food for the week. For the past several days, I’d been learning the facts about juvenile diabetes and trying to accept Jenna, my six-year-old daughter’s, diagnosis. In addition to the CPR exam, I’d spent the day reviewing how to test Jenna’s blood and give her insulin shots. Now I was buying the needed food to balance the insulin that would sustain Jenna’s life.
“Let’s go, Janet,” I mumbled to myself while sliding out of the car. “Tomorrow is the big day! Both kids are coming home from the hospital.” It didn’t take long before my mumbling turned into a prayer.