Wednesday, January 6, 2010

How to Rip Off a Label

"I don't get it," I turn the pages and desperately try to understand the fascination with a green room, a rabbit and a painting of a cow jumping over the moon. Toy house. Mittens. Socks. And that old lady "whispering hush."

My husband shrugged. He didn't get it either. Why was this book beloved by so many? What was the big deal? There wasn't much of a plot and the character development was awfully flimsy.

Although I didn't know it then, I would be delivering a 5 lb. baby boy in a matter of days. It would be only then that I would get it.

"She's a daydreamer. It is hard to get her to focus." My mom nodded at what she already knew.

"I know. She's always been like this. She gets lost in her own little world." My mother had no idea the weight of her words.

We left the meeting with a label and a referral for services. I was now "special." I had a label and "it" had a name. ADD.

My mom refused the drugs, claiming that I would eventually grow out of it as if it were last year's woolly winter coat. Although I don't know if I grew out of the condition or if I just learned to manage it, I never grew out of that label. While over time the label no longer existed in my records, it wrapped itself around everything I tried to do. It became my crutch, my excuse, my reason to begrudgingly welcome failure. ADD--my chaperone to mediocrity.


"What are you thinking?" I watched her as she followed JR around the room. She'd tilt her head, sigh, scribble in her notebook, and then finally, she looked to me. What the hell was she thinking?

"Well, I'm just taking note of the things he is and isn't doing, you know, what's right and wrong for a two-year old." The sound of her voice was like a needle working its way through the back of my neck. I cringed. She was the developmental specialist assigned to our case. Since JR was a month early we qualified for special services. Although I didn't think we really needed them, I was eager for any help, any guidance that I could get. I was focused on speech--the extra help would be a bonus. But the look on her face, the haughty tone in her voice. What was she talking about?

JR was born a month early. Totally healthy except for having to endure time under a lighted blanket. He hit every milestone. No delays. I never expected him to be a genius, to play a concerto at 3 , recite the periodic table at 5, enter college at 10. I just wanted him to be where he was supposed to be, whether he got there early, late . . . didn't matter. I just wanted him to get there.

His speech was my biggest concern. While he was a physical dynamo, his verbal skills consisted of short grunts and my personal favorites, high pitched, groans and whines. I got it. He had better things to do than speak. He wanted to run, to jump, to make an attempt to land in the ER before 3.

"What are you thinking when you watch him? I only ask because you have a look of concern on your face." I prompted her to respond. I leaned in closer and searched her expression.

"Autism," she replied. And with that, the oxygen was sucked out of the room.

He doesn't have autism. I'm 99% sure. The doctor was 100% certain, shaking his head as I told him of the events leading to his "diagnosis."

Regardless, we live in a world of labels. What will be his label, I wonder? What word will bind his hands and cause him to second guess his ideas, his dreams, his abilities?


A wise friend once asked me, "What would you do if he did have autism?"

My mind was a swirling vortex of bubbled questionnaires, meetings around tables with "experts" scrawling notes, laborious hours of therapy, and the countless fears that he may never belong.

What would I do?

Love him. Intensely. Unconditionally. No matter what.

JR wraps his legs around my body, his head rests on my shoulder as I lean back into the chair and open the book.


"Moon!" JR shouts.

"Yes, baby. MOON!"

"Goodnight comb and goodnight brush."

"Mush!" he shouts.

I squeeze him tightly in my arms.

"Yes, baby. Goodnight mush."

I hold him in my arms, gently rubbing the arch in his back. His words silence the nagging fears and doubts--in him, in me.

The labels fade into an imperceptible whisper.

"Goodnight noises everywhere."


aggmommy said...

And I love it...of course.

painted maypole said...

this brought tears to my eyes.

love that book. i used to recite it in the half dark of the nursery, turning the pages at the right time but not even needing to look at them, while MQ nodded off in my arms.

Mozi Esme said...

Oh, we do love that book here!

And labels, or stereotyping - I know we all use them to some extent to try to simplify a terribly complex world - it's a human coping mechanism. And by getting a diagnosis or label, it helps us find resources to deal with the issues. But I agree that we've started using labels as crutches, amongst other things. And we lose our individuality - the ability to excel or act outside the label. The trick is figuring out where the line should be drawn - when does labeling hold us back versus help us?

Well-written post, as always...

MommyTime said...

Oh, the labels. I know so many kids who have been stuck because of them, so many parents agonizing over them. It seems that without them, you can't get "help" if you really need it, but no one can agree on what the labels should be or how to apply them. I say go with your heart. Trust your doctor. And don't panic. He will always be your miraculous child, and that needs no label but love.

Pregnantly Plump said...

What a touching post. I understand the speech worries. We had to visit a speech therapist for Little Elvis as well. It was such a scary time.

Jenn @ Juggling Life said...

I hope it is a lot of worry for nothing.

He is such a delight.

Putting the FUN in DysFUNctional said...

Love this SO much.
My stepson has ADHD, and I do not allow him to say "I can't help it". I may be too hard on him in some ways, but I won't let him use it as a crutch.

Anonymous said...

Honey. I am going to call you. We are in the same place. We don't have a diagnose of anything yet, it could be autism or something else, but I know there is something and I am scared, and sad, and certain that I will love my child deeply and with passion and never stop trying to get him what he needs.

L, I love you so fiercely. I am so happy you are in my love, and I want you to know that I am here. I am always here even when it seems that I am distant. I know you are busy. I know I am busy, but I'm calling. We need each other.

I have met your boy. I think he is wonderful. I love him and you with all my heart.

I'm sorry I hijacked here. I am just so overwhelmed with emotion.

Unknown said...

*whispers* Thank you for writing this. Thank you.You just wrote a reflection of a life I have lived through, moments I could recite literally every word you said. I have that child that you have. I am that same little girl you are. You are my mirror, and I appreciate that you were able to find the words that I could never express. said...

I know exactly what you're feeling. I hated the labels. They didn't help. They just gave him a crutch as you said. i understand the desire that the specialists have to help every child, but sometimes they see fire where there is only a little heat. Sometimes they cause more concern than even a "diagnosis" would warrant.

When kids used to be late talkers (30 or 40 years ago) people simply said "they're late talkers."

My niece and nephew are late talkers. Didn't really speak until almost 2 years old and even then, barely a few words. My niece is almost 4 and WON'T SHUT UP now.

Kamis Khlopchyk said...

That is one of my favourite books but like you, I didn't get it until Jack was 6 months old or so....

I am so very sorry that she uttered that word to you. It's something that needn't be said until they are sure....all kids are unique and develop in their own way. Sometimes I think that all these "experts" are more of a hinderance than a help.

Kat said...

I get this too. More than you know.

I took me a long time to realize that my label didn't have anything to deal with me. It was just a word. It did not define me.

Lori said...

That gave me goosebumps!
Love ya!

Lisa @ Boondock Ramblings said...

For the longest tine I worried about Jonathan's speech. I thought he might have autism. It was scary. Then he started talking and he hasn't stopped. Oh my!

Karen said...

"Love him. Intensely. Unconditionally. No matter what."

That is the only answer there is. I love you for it.

Momisodes said...

I always love what you write and how you write it. Especially this post.

Labels are something we are sort of struggling with as well with our daughter. It tears me up inside thinking about it.

Thank you for sharing this.

Mommy X said...

What a wonderful post! And my heart goes out to you. We've dealt with a few challenges ourselves and I feel for you.

So, let me just tell you something that may help you to feel better as I am not a fan of the labels either. My husband barely spoke when he was a little boy. In fact, he didn't really start to talk a lot until well into his third year. This was before people knew what the heck autism was. They said he was slow. He's now a totally normal, wonderful and intelligent man. He is a lawyer and a father and an incredible person. He's also a little on the quiet side but nothing debilitating. I hope that encourages you some. I know that if I were in your shoes with with "autism" label, I would react exactly the same way you are...and you have my total support. Miss you, by the way. Much love to you. XO

Mama Jamz said...

Yes, yes, unconditionally, no matter what. We love them.

But what got me was the book. Just now, with my fourth child, have we begun reading it, and he LOVES it. LOVES it so much it makes him laugh with glee. We have literally worn out the board book and I will have to buy another. I have wondered why he loves it so much, too (he's now 10 months old) and I guess it's just a magical combination of words and pictures and colors. I love it now because he loves it so much.

And the labels, a double-edged sword. But I hear you. It's hard.

The mad woman behind the blog said...

Thank you for your honesty. (Still working on "getting" that book.)
We wonder too if/when our daughter will speak. Many ear infections over the course of her young life may have impacted her hearing until now. We're anxious to hear her thoughts. (And a little nervous too.)
A good friend's son also had some labels...developmentally delayed, in some ways but not autistic. Doesn't help that state provided services REQUIRE labels to get help.
Good luck and good thoughts your way.

Kristen said...

Oh Laura I am so sorry. I am so glad that he does not have autism. And you are right, people are so quit to label. Remember teaching and at the beginning of the semester getting the list of kids who had been Labeled? I do.

I'm with you! Here's to ripping off the label! :)

hugs friend

tiarastantrums said...

I will say it again - he's simply a genius stuck in his little body!! Do all the therapy - 100% to the fullest and you will get the BEST results EVER!!

Unknown said...

I can't believe I missed this post. Now I'm going to go back and re-read your most recent post.

I hope you find the answers you are looking for and I hope I'm not being redundant and you won't want to punch me in the face through the computer, but have you read Jenny McCarthy's book "Louder Than Words"? I read it recently, I'd bought it when Mack was still without speech and although Mack is now 3 1/2 and now has words, but maintains the head banging... I read the book and it touched me so deeply.

I truly hope you find the answers you seek.

Lisa said...

i haven't been here in a long time, so I'm reading back, but want to say you are one hell of an amazing mom. the insight you can see in your son, others, etc. is amazing. and the way you write it is gut wrenching & beautiful all at the same time.

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