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In Their Own Words – The Big Dance

October 27, 2011 18 comments
It was a random phone conversation of no significance. She mentioned the big dance at a local boy’s school: the first big dance of the year.

I didn’t know about the dance. I listened to who was going, names of kids I knew and some, some only vaguely. “It’s a pretty big deal, it kicks off the social for the whole school year. You remember how it was about the first dance.”I smile to myself. Yes, I remember.

A couple of names were presented as not going. I suggest they are only freshman. Maybe they are just not emotionally ready. “No,” she responds. “They really should go. They meet other kids. Those social connections are important.”

Though Sam is the same age as most of the kids named, he isn’t going. He has never gone. But I don’t say those words out loud. The obvious reason is that he doesn’t go to the school and boys outside the school are not invited.

But that isn’t the only reason of course. Quite unexpectedly I feel a brief waive of nausea. I want to stop listening but I don’t. I realize I have stopped breathing for a moment.

It’s just a dance, I remind myself. Just a dance with teenage kids.

But neatly tucked away are my youthful memories of The First Dance. All the excitement; the emotional roller coaster ride of adolescence - the delight, the terror, crushes and heartbreak; the tentative steps into a more adult world of emotion. That right of passage that most of us experience.

I want Sam to experience that. But he likely can’t. He likely won’t. Why does this particular milestone catch me by surprise? I don’t want to care. But I do.

I keep the conversation moving and ask a mindless question. This time convincing myself, it’s just a dance. Just a dance.

As I hang up the phone and walk to the kitchen, Sam is playing music. We dance with abandon as we often do. And though it isn’t the same; or even close, I hear his laughter as we twirl. I find myself smiling and realize, it will do.

“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 – Tea for Two

September 8, 2010 12 comments

This “In Their Own Words,” is written by Alysia Butler of Hopedale, Mass.

I’m sitting on the floor of our toy room watching my son.

He’s at our Fisher Price toy kitchen, pretending to turn on the water and wash his hands.

He fills up a cup from the pretend blender and hands it to me, pushing it towards my mouth so I’ll pretend to drink from it.

I take a sip, say “that was delicious!”, and hand it back to him.

With a smile, he pretends to wash the cup in the toy sink and puts it away.

He picks up the toy phone from its pretend cradle on top of the kitchen, and babbles into it (sounds vaguely like “Hello? Small cheese pizza with a side of garlic bread? Bye!)

I smile. He turns to me and laughs. He grabs a plate from inside the toy refrigerator, takes a spoon, and hands it to me. “Eat!”, he says.

I know enough to recognize what this all is now. This is pretend play.

But it’s not from my four year old.

It’s my 22 month old.

And it’s making me very sad.

My four year old never did this at 22 months. He didn’t do it at two years old, or even at three years old. Just now, after a year of special services through his school, are we seeing this type of pretend play.

I’m trying hard to stay in the moment – to sit and laugh and eat my pretend food like a good mother should. I should be celebrating the fact that my youngest is meeting all his milestones. He’s finally starting to talk in a way that doesn’t sound like he’s underwater. In almost every way, he’s right where he’s supposed to be.

But all I can do is think how different that has been for my 4 year old.

My 22 month old plays better, eats better, holds a spoon and fork and crayon better and sleeps better than my 4 year old. For goodness sake, they are only three pounds apart, even though two and a half years separate them. And it worries me. For both of them. What will happen when they are both older and the distance between their skills becomes more noticeable – more obvious – to the outside world and to each other?

I’m snapped out of my sadness by a sudden hug from my 22 month old. A real hug. A “thank you for playing with me Mom” hug. I hug back and ask for more pretend juice.

My four year old spots us playing and comes running into the room. “Can I have a tea party, too?”

I make room for him in front of the tiny pretend kitchen and he gets himself a cup. He asks his baby brother to pour him some juice from the pretend blender and they both pretend to have a drink. They giggle and I have to laugh too.

They are pretend playing together. And I realize that I have to stop comparing my kids. All three boys will do their own things in their own time. One may be reading chapter books at age six, one may be able to name every single Hot Wheels car in our house, and one may be able to sing along with Lady Gaga. It doesn’t matter how long it took my four year old to get to this tea party. Every milestone and every step, he’ll be a bit behind where he’s supposed to be. But he’s here now. That’s what my focus needs to be.

In my house, there can’t be any supposed to be anymore. Just where we are now.

Back to my tea party. Because my pretend tea is getting cold.

“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 – Matthew’s Talking Dream

September 1, 2010 19 comments

This “In Their Own Words” is by Debbie Simon Pacholder. She and her husband, Tom, have three children. Their six-year-old son, Matthew, has autism and is non-verbal.

I am home on a Saturday, in the kitchen, with all three kids buzzing about.  Allison and Shannon, our two-year-old twins, are teasing each other with their favorite bunnies.  Tom, my husband, watches them and laughs.  Matthew, our six-year-old, is at the refrigerator.  He touches the water dispenser with his finger, then suddenly turns to face me.  “Mom, can I please have a glass of water,” he asks, slowly and distinctly, carefully looking me in the eye.

Instinctively, I head toward the cabinet to get a cup.  Then, it hits me.  My son has spoken – and not just “no”or “yeahhh.”  My son has uttered a full sentence!  MY SON HAS UTTERED A FULL SENTENCE!

“YAY, Matthew!” I shout, flooded with happiness and relief.  He smiles sheepishly and accepts my hug. “Did you hear Matthew; DID YOU HEAR HIM?” I shriek.  “He just asked me for a glass of water!”  His voice is so full and beautiful. I think, this is what winning the lottery must feel like.

Tom is too surprised to form words, but the girls circle around Matthew and touch him, like he’s a rock star.  “Yay, Boy!” Allison sings.  “Matthew, talking!  Matthew, talking!” Shannon says, and flings her arms around him.  He smiles only slightly, but his deep blue eyes are alight with excitement.

Fast forward to the next day.  I’m at school, with all three kids.  I’m afraid.  Afraid Matthew will stop talking, that the day before was just an anomaly.  Yet, he’s speaking.  Words.  Phrases.  Sentences.  He’s had a breakthrough; he’s come out of it. I hold my breath.

“I strongly recommend you send all three kids here next year,” the director tells me, while they play nearby. She nods her head toward the twins.  “They’re doing incredibly well – and I see how much they have been able to help their brother.” She glances at Matthew, who’s playing with a toy truck, appropriately.

I’m about to answer, but something stops me.  A sound.  Click!  The safety gate to Matthew’s  room.  He’s up, and it’s 6:00 a.m.  Rudely, I’m jolted back to reality:  I’d been dreaming all along.

Not that I should have been surprised.  I’ve had this dream before, the Matthew’s Talking Dream. In the last one, we’re in a room with only a TV, and he tells me he wants to watch Frasier. Totally random. But this one is different; it mimics reality.

Matthew has put words together in real life three times. First, when he was two, at the Noah’s Ark pool – a water Disneyland for toddlers.  We’re at a birthday party. Matthew’s playing in the water, which churns like a hot tub, when it suddenly becomes still.  We whisk him out and head toward the pizza and birthday cake.  “Go back!” he shouts quickly.  We’re stunned.

Next,  Matthew’s four, and swimming.   His instructor, Gina, shows him how to dive in the water for the toy fish she leaves at the bottom of the pool.  She’s talking, and Matthew shifts his feet from one side to the other, impatiently.  “I got it!” he exclaims. Did I hear right?  I look at Gina for confirmation. “He said it,” she laughs.  Matthew looks in my direction, then focuses on the water, like it’s no big deal.

The next week, more instructions from Gina.  “I’ll do it!” Matthew says.  “I can’t believe it,” I shake my head.  “Clearly, he can talk.”  “Yep,” Gina smiles.  “He can.”

I look at Matthew.  “I’m on to you, buddy,” I tell him.  “Your secret is out.”  He pretends not to hear.

That was two years ago.  No phrases or sentences since.  Not even in the pool. I try not to be upset, but I just don’t get it. Hours and hours of swimming, ABA, OT, hippotherapy, oral motor therapy, reflex integration therapy, and still no more speech.  He’s way, way overdue, and I’ve told him as much.

Last week, we’re playing on his bed. He’s laughing and hugging me, like a typical six-year-old.  I remember what one of his therapists told us.  He knows how to do so, so many things.  He’s just choosing not to.

“Matthew, I know you can do it,” I whisper.  “You can talk to us.  I want you to talk to us. You know Allison and Shannon won’t let you stay quiet for much longer.  You’re going to have to make the decision to talk.  I hope it’s soon.”  He stares into my eyes, surprised. I stare back. He laughs – a deep giggle from his belly – then covers my mouth with both of his hands.  I move them away and hold them in mine. “Think about what I said,” I tell him.  “Goodnight … I love you.”

The next morning, he’s the first to wake up, and runs into our bedroom.  “Good morning sunshine,” I say, melodiously.  He looks at me and comes to my side of the bed.  “Mommm!”

It’s not a sentence, but it’s a start.

“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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Understanding Regression in Autism through Direct Assessment from Infancy

In Their Own Words – The Fear

February 11, 2010 Leave a comment
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