Jesse has two new women in his life these days. Ms. Brandy, his speech therapist and the other is Ms. Mary, his occupational therapist. These two ladies are the ones who are going to help teach my son how to talk, to play with other kids, and a number of other things he's not able to do yet, but should. I'm not too sure how I feel about that. Isn't that a mother's job?
I watch him as he walks through the therapy gym with big cushions, rubber play mats, a ball pit, a big swing and lots of fun things that even I'd be happy to play on. And he just kind of wanders, content with holding onto the block he brought in from the waiting room, not really looking at anything or anyone. Peering through the tinted glass, I look at his face to see if he's having fun or if he's anxious about being in a room that isn't his own, hoping he doesn't get so overwhelmed that he has a meltdown. Even though I look at that beautiful face every single day, I still can't exactly decipher how he's feeling. Listening to Brandy talk to him in her kind voice encouraging him to sit on the swing with her and watching as Mary scoops him up and brings him into the ball pit with her happy voice, I have no doubts that he is in good hands. These two women sure know how to make that boy feel like a king. That makes me smile.
But I still really worry for his future. It's just seems so much more...well, up in the air. What if he is never able to talk? Will school be twice as hard for him? How about when he's finally grown? Will he be able to live on his own? Will he be able to provide for himself? Will he find someone who understands him and loves him because of, not in spite of, his differences? Besides his mom and dad, of course. How different will it be once he's evaluated and diagnosed? Will the diagnosis be what I already think it is or will it blindside us?
My sister asked me recently if I've been doing anything besides studying the 'what ifs'. Excellent question. I wasn't before he started therapy. But it got me thinking about what Jesse really needs. It's true that 'what if' questions are a good place to start, but, no doubt, a bad place to stay. So, besides therapy, what does our beautiful Jesse need? He still needs his mommy to love on him even when he doesn't want it, because that is what mommies do. He still needs his daddy to get him all riled up just before bedtime with chasing and tickles...because that what daddies do. Beyond that, we've got to remember that he's our fun and goofy little boy that loves to be tickled, loves Bob the Tomato and Larry the Cucumber, REALLY loves King Julian from the Madagascar movies, loves dancing to any and all music...even the music plays on the weather channel during the "Local on the 8's", and he gets really calm while standing out in the rain because he likes the feel of the raindrops falling on his head and arms.
Taking a deep breath, I look again through the tinted window. The boy-king himself is now running across the playmats with the blocks still in hand and scream-laughing, looking back to see if Ms. Brandy or Ms. Mary is going to catch him. Stifling a laugh, I sit back down in the chair in the hallway. That's when I remember what I read in Nancy Wiseman's book, Could It Be Autism?. No matter what diagnosis a child may receive through evaluation, they are not a label. I like that. No matter what the doctors tell us about Jesse, he will always be our son. He's a person, an individual with likes and dislikes. He's fun, frustrating, loving at times and distant at other times. But he's the same as he's always been and no label can ever make him change. How cool is that?
Friday, July 23, 2010
Tuesday, July 6, 2010
Dance Like Nobody's Watching
Today, my adorable Jesse discovered the excellent acoustics of our bank's lobby by using the FULL capacity of his very, healthy lungs.
It was supposed to be a quick and easy little trip to the bank to make a deposit for Jesse's daddy. Easy being the key word. As I was attempting to fill out a deposit slip with one hand and hold Jesse with the other, he suddenly decided he no longer wanted to be held. Ordinarily, he prefers for me to hold him when we're in places he's not familiar with. Not today, folks. Instead he wriggled and squiggled until he was practically falling out of my grip. To make it even better, he accompanied his movements with the not so sweet music of whining which led to squealing, which led to crying, and finally landed with all out screams...much to my embarrassment.
By this point, we're already getting a few stares from the other patrons and I can feel my cheeks getting hot. The receptionist, whom we were standing near asked me kindly, over Jesse's wails, what he wanted. Oh, how I wish I could tell her. I knew I was only guessing at what Jesse wanted when I told her he only wanted down. But since he can't tell me anything, I seriously didn't have a clue and that just sucked.
Now, I'm not the kind of mom that has EVER let her kids run free in restaurants, libraries, grocery stores, bank lobbies, etc. I'm usually the one that is resisting the urge to reprimand the children who are allowed to run wildly about. It's just so rude and inconsiderate for others and the kids don't learn to behave.
However, after answering the receptionist, she smiled sweetly at Jesse and told me, "Just let him down to run. It'll be okay, hon." There was a fear that passed over my face I'm sure. So I looked around at the crowded lobby of irritated people who were all looking back at Jesse and me. I looked down at Jesse's tear-stained face and I just had to let go of my pride and let him run.
As his kicking feet touched the floor, I prepared myself for his onslaught of the magazines piled up on the table in the lobby. Instead, there was moment of hushed silence and then everyone smiled as they watched as this adorable, light-brown headed, blue-eyed little boy danced about on the floor right next to me, not going anywhere.
That's when I heard it. There was music quietly playing over the bank's speakers. I'd never noticed it before. But my Jesse did. He'd heard it and all he wanted to do was just dance to it. I watched him happily dancing, oblivious to anyone around him and it struck me that it was my pride and embarrassment that was the problem. How often do we keep ourselves tied up and stuck in a box because we're afraid we might get looked at strangely or someone might say something about it?
Even though Jesse does have to learn the rules of society, I hope he never loses his ability to express himself without hesitation and to keep on dancing as though nobody's watching.
It was supposed to be a quick and easy little trip to the bank to make a deposit for Jesse's daddy. Easy being the key word. As I was attempting to fill out a deposit slip with one hand and hold Jesse with the other, he suddenly decided he no longer wanted to be held. Ordinarily, he prefers for me to hold him when we're in places he's not familiar with. Not today, folks. Instead he wriggled and squiggled until he was practically falling out of my grip. To make it even better, he accompanied his movements with the not so sweet music of whining which led to squealing, which led to crying, and finally landed with all out screams...much to my embarrassment.
By this point, we're already getting a few stares from the other patrons and I can feel my cheeks getting hot. The receptionist, whom we were standing near asked me kindly, over Jesse's wails, what he wanted. Oh, how I wish I could tell her. I knew I was only guessing at what Jesse wanted when I told her he only wanted down. But since he can't tell me anything, I seriously didn't have a clue and that just sucked.
Now, I'm not the kind of mom that has EVER let her kids run free in restaurants, libraries, grocery stores, bank lobbies, etc. I'm usually the one that is resisting the urge to reprimand the children who are allowed to run wildly about. It's just so rude and inconsiderate for others and the kids don't learn to behave.
However, after answering the receptionist, she smiled sweetly at Jesse and told me, "Just let him down to run. It'll be okay, hon." There was a fear that passed over my face I'm sure. So I looked around at the crowded lobby of irritated people who were all looking back at Jesse and me. I looked down at Jesse's tear-stained face and I just had to let go of my pride and let him run.
As his kicking feet touched the floor, I prepared myself for his onslaught of the magazines piled up on the table in the lobby. Instead, there was moment of hushed silence and then everyone smiled as they watched as this adorable, light-brown headed, blue-eyed little boy danced about on the floor right next to me, not going anywhere.
That's when I heard it. There was music quietly playing over the bank's speakers. I'd never noticed it before. But my Jesse did. He'd heard it and all he wanted to do was just dance to it. I watched him happily dancing, oblivious to anyone around him and it struck me that it was my pride and embarrassment that was the problem. How often do we keep ourselves tied up and stuck in a box because we're afraid we might get looked at strangely or someone might say something about it?
Even though Jesse does have to learn the rules of society, I hope he never loses his ability to express himself without hesitation and to keep on dancing as though nobody's watching.
Saturday, June 26, 2010
How It All Began
To have a better understanding of what this is about, it would take the talents of a writer. Someone who is a Merlin with words. You know, creative. Someone who makes sense and can follow an outline or at least make a point once in a while. That person is not me. My apologies. However, this isn't just about me. It's about my youngest child, Jesse and how his father, Jon and I are learning what makes that boy tick.
The first of Jesse's adventures began a whole year, six months and eight days ago. Actually nine days ago to be more exact. On December 15, 2008, sometime around five or six o'clock I started to feel the labor pains. Knowing I wouldn't be able to have spicy foods for quite a while due to breastfeeding, I insisted on going to eat at Uncle Chan's. That was my favorite Chinese buffet in Texas City where we lived at the time. Oh man, it was the best! Fried, fattening, staying warm under those awesome heat lamps. Mmm. So, in between contractions I ate the last crappy Chinese buffet food I would get for the next year.
Afterwards we went home, watched a little television, timed contractions and retired to bed around 11:00 pm. Jon slept like the dead and I dozed in between the ever increasingly painful and longer contractions. By 4:00 am I called the doctor and was given the go ahead to get the hospital.
I woke Jon up sweetly saying "Honey. It's time."
His response was a sleepy, "It's only 4:30 am. Can't you just wait another hour? I'm really tired."
Seriously?
After restraining myself from throwing something heavy with sharp edges at his head, I calmly answered him with, "Excuse me for letting the birth of our son interfere with your sleep schedule, but you better get your ass up. We've got to go (pant, pant, pant) NOW!"
"Oh shit, Baby! I'm sorry! I'm up. Let me just grab a Dr. Pepper and we're gone! Um, I love you."
By 11:18 am on December 16, 2008, Jesse entered the world bright-eyed and crying only a little. God, he was so beautiful. In the moment the nurse laid him on my chest I was so overcome with happiness and nostalgia of when my first two were born. Jesse looked a little like both of them. I looked over at Jon and he was just covered in both pride for his tiny son and the panic of becoming a dad.
Two days later we made it home and things rocked on the way they normally do when a newborn is in the house. Sleepless nights, dirty diapers, LOTS of laundry. All was well and Jesse was progressing along just as he should be.
At this point you may be asking why I'm writing about Jesse and his beginnings. It's not just the usual mother writing about her offspring, as sweet and touching as those stories tend to be. Rather, I'm using this as a journal about the everyday happenings with this silly little monkey that God has blessed us with. In scientific doctor-speak Jesse is non-verbal and we are on a waiting list for him to be tested to see if he is on the autism spectrum. In my terms, it means he's never said a single word, only noises (cute and not so cute), he's never responded to his name, and doesn't make any gestures for the things that he wants, among other things. Bad days are filled with tears, screams and sobs. The really bad days are when both Jesse and I do the screaming and sobbing while we play the guessing game. But the best days? Those are the days that his beautiful smile covers his face. When he runs to us laughing and trying to climb into my lap so I can tickle him or play the little piggies on his toes. Or when he dances to music. Those days just plain rock.
But to wrap up the first and incredibly long start, this is not some woe is we kind of story. It's not a tragic life that we lead. It's just so incredibly different from what I imagined it should be for my child. But isn't that how it ends up for every mother with each of her children?
More soon. It's bathtime for the adventurer.
The first of Jesse's adventures began a whole year, six months and eight days ago. Actually nine days ago to be more exact. On December 15, 2008, sometime around five or six o'clock I started to feel the labor pains. Knowing I wouldn't be able to have spicy foods for quite a while due to breastfeeding, I insisted on going to eat at Uncle Chan's. That was my favorite Chinese buffet in Texas City where we lived at the time. Oh man, it was the best! Fried, fattening, staying warm under those awesome heat lamps. Mmm. So, in between contractions I ate the last crappy Chinese buffet food I would get for the next year.
Afterwards we went home, watched a little television, timed contractions and retired to bed around 11:00 pm. Jon slept like the dead and I dozed in between the ever increasingly painful and longer contractions. By 4:00 am I called the doctor and was given the go ahead to get the hospital.
I woke Jon up sweetly saying "Honey. It's time."
His response was a sleepy, "It's only 4:30 am. Can't you just wait another hour? I'm really tired."
Seriously?
After restraining myself from throwing something heavy with sharp edges at his head, I calmly answered him with, "Excuse me for letting the birth of our son interfere with your sleep schedule, but you better get your ass up. We've got to go (pant, pant, pant) NOW!"
"Oh shit, Baby! I'm sorry! I'm up. Let me just grab a Dr. Pepper and we're gone! Um, I love you."
By 11:18 am on December 16, 2008, Jesse entered the world bright-eyed and crying only a little. God, he was so beautiful. In the moment the nurse laid him on my chest I was so overcome with happiness and nostalgia of when my first two were born. Jesse looked a little like both of them. I looked over at Jon and he was just covered in both pride for his tiny son and the panic of becoming a dad.
Two days later we made it home and things rocked on the way they normally do when a newborn is in the house. Sleepless nights, dirty diapers, LOTS of laundry. All was well and Jesse was progressing along just as he should be.
At this point you may be asking why I'm writing about Jesse and his beginnings. It's not just the usual mother writing about her offspring, as sweet and touching as those stories tend to be. Rather, I'm using this as a journal about the everyday happenings with this silly little monkey that God has blessed us with. In scientific doctor-speak Jesse is non-verbal and we are on a waiting list for him to be tested to see if he is on the autism spectrum. In my terms, it means he's never said a single word, only noises (cute and not so cute), he's never responded to his name, and doesn't make any gestures for the things that he wants, among other things. Bad days are filled with tears, screams and sobs. The really bad days are when both Jesse and I do the screaming and sobbing while we play the guessing game. But the best days? Those are the days that his beautiful smile covers his face. When he runs to us laughing and trying to climb into my lap so I can tickle him or play the little piggies on his toes. Or when he dances to music. Those days just plain rock.
But to wrap up the first and incredibly long start, this is not some woe is we kind of story. It's not a tragic life that we lead. It's just so incredibly different from what I imagined it should be for my child. But isn't that how it ends up for every mother with each of her children?
More soon. It's bathtime for the adventurer.
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