A couple weeks ago, an anonymous person found his way to a blog using the search words, "I wish I didn't have Asperger's." Today, the autism community, individually and collectively, is offering a response to this unnamed person.
Dear "I Wish I Didn't Have Asperger's":
I don't know if you are a male or female, minor or adult. I don't know if you sat down to the computer and typed your query in a moment of strength or of weakness. We are, after all, strangers.
I am the mother of two children with autism.
I told our younger son, king of the search engines, about your recent search and asked him what he thought about it. He said simply, "I'd tell him that I wish I had a laser so that I could zap it out of him."
Really?
"Well, what about your older brother?" I asked. Our older son is low verbal and more severely affected with autism. "Would you want autism to be zapped out of him also?"
"Yep," he answered simply. I was sad. I understood, and I was too afraid to ask him if he wanted his own autism zapped away.
Here is my honest answer: if I had that magic laser, I'd zap it out of all of you. I would. In fact, I practically have tried to zap it out of my kids with just about any treatment I could find. That was back in the early days after diagnosis.
I wanted it gone also.
I wanted our kids to sleep. I wanted our older son to talk. I didn't want any more gastric pain or sensory pain or social anxiety. I didn't want locks on doors and windows or family arguments or toileting accidents or crippling fear. I didn't want people to look at our kids strangely any more.
I wanted to be normal.
What is normal, anyway? As I grew more comfortable in my own shoes as a mother to these two special children, I became more certain every day that we created our own definition--and that it wouldn't happen overnight.
As a mother to two children with autism, I am a spectator to their lives, an advocate when called to duty,and a cheerleader always. I stand in awe of their strength.
To them and to you, I want to say, "Thank you".
Thank you for not only living your life loudly, but for screaming it from the rooftops so that a generation of medical science, of educators, of neighbors, family members and of friends can learn.
Thank you for leading by example.
Thank you for making your life seen today so that autistic people tomorrow can be better understood.
As a community, we've not yet hit our stride. We're getting there, and often we're looking to you to blaze the trail.
Thank you. I know that it isn't easy.
In our house, our quest is to scale those hills to progress each day, even the ones that seem insurmountable. For, really, what other choice is there?
On our way, we lose our footing. We stumble. We fall.
We might even wish that we weren't on the journey.
But, then we get back up, and we keep moving forward until one day, we can stand at the zenith of our climb where autism no longer defines us but is merely a part of us.
Thank you and thanks to the countless others in the autism community for not giving up on the climb. This is a joint effort, and we all have our place in it. Part of yours was not too long ago when you created a search about not having Asperger's.
I have empathy for your situation. I have gratitude for your recent efforts, and I have hope for the future.
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This entry was written as part of Autism Positivity Day Flash Blog 2012 and is the FINAL response in the Blogging A to Z April 2012--I promise there are a couple "z" words in there somewhere...
Monday, April 30, 2012
Sunday, April 29, 2012
Can I Flash Blog with the letter "Z"?
Tomorrow, the autism community is hosting a flash blog. And, it just so happens that it is also the final day of a month-long blogging-through-the-alphabet challenge in the April A to Z 2012.
Call me crazy, and count me in!
This flash blog day all started with one blogger's dashboard, a handy tool we bloggers have to keep track of how people find their way to our blogs.
That's right. For example, if you wanted to find me, you could type anything such as "Mom Cave Toilet Queen", or, "Mom Cave Crazy Amy", you'll likely land on this blog. And, guess what? I would know allllll about it, folks. Well, of course, I wouldn't know that it is specifically you, but, giggle, I know the searches that land you here.
A couple weeks ago, a person typed something into a search that landed him/her to a blogger's page: "I wish I didn't have Asperger's".
Some person--a teen? an adult?--was looking for something--support? answers?-- that landed him/her into the world of autism blogs.
That made this blogger and others think: what would we say to this anonymous person given the chance?
Thus, this flash blog day was born. On the final day of Autism Awareness/Acceptance Month, April 30th, bloggers in the autism community have been asked to write a response to "I Wish I Didn't Have Asperger's".
It's the Autism Positivity 1012 Flash Blog Event.
You can read all about it by clicking the badge to the right of this page. Or, heck, I'll even make it easy and give you another link HERE.
So...how positive do you think we are about autism here in the Mom Cave?
And, any thoughts on how I can make my response start with a "Z"? Haha.
Call me crazy, and count me in!
This flash blog day all started with one blogger's dashboard, a handy tool we bloggers have to keep track of how people find their way to our blogs.
That's right. For example, if you wanted to find me, you could type anything such as "Mom Cave Toilet Queen", or, "Mom Cave Crazy Amy", you'll likely land on this blog. And, guess what? I would know allllll about it, folks. Well, of course, I wouldn't know that it is specifically you, but, giggle, I know the searches that land you here.
A couple weeks ago, a person typed something into a search that landed him/her to a blogger's page: "I wish I didn't have Asperger's".
Some person--a teen? an adult?--was looking for something--support? answers?-- that landed him/her into the world of autism blogs.
That made this blogger and others think: what would we say to this anonymous person given the chance?
Thus, this flash blog day was born. On the final day of Autism Awareness/Acceptance Month, April 30th, bloggers in the autism community have been asked to write a response to "I Wish I Didn't Have Asperger's".
It's the Autism Positivity 1012 Flash Blog Event.
You can read all about it by clicking the badge to the right of this page. Or, heck, I'll even make it easy and give you another link HERE.
So...how positive do you think we are about autism here in the Mom Cave?
And, any thoughts on how I can make my response start with a "Z"? Haha.
Saturday, April 28, 2012
"Yes"
I'm such a sucker for happy endings.
I like Hollywood conclusions, the chick flick that finishes with a nice, neat package and a pretty bow resting on top. I want warm, fuzzy and happy.
And I want it now.
A few months ago, I posted about a breakthrough our son had experienced with his new speech therapist using "Yes" and "No" picture symbols. (CLICK HERE to read about it). After that post, I had visions of riding off into the sunset and soon having real conversations with our older son.
I'm still waiting.
These two magic cards...
...while definitely an exciting step forward for our son in his language development, aren't quite so...magical. At least they aren't proving to be magical at home.
I started carrying those cards in the pockets of my pants when our son was home so that they were handy.
"All done!" is what he'd tell me any time I'd pull them out. Translation: I'm at home mom. Home is not school. Put those away.
Fed up one day and refusing to be bossed around by a ten-year-old, I pressed forward, letting him know that I realized he was tired from school but that he was going to answer just five questions.
He answered, but he answered all five questions in the affirmative. Something just seemed fishy to me. On a whim, I decided to test him.
"Is my name Bertha?" I asked. (It's not.)
"Yes," he pointed to that card and also vocalized. That stinker.
"Aw, c'mon! You can give me a better effort than that!" I prodded. "Tell me, is your name Fred?" I asked. (It is not.)
"Yes," he again pointed and vocalized.
Go away, he was saying to me. I don't want to talk to you.
While I did't take this slight personally, I was disappointed. I had wrongfully assumed that once we found an avenue of communication to which our son related, then we would be propelled forward by leaps and bounds.
I envisioned opening the flood gates, asking and answering ten years of questions that I've had about my very own child. I wanted to hear his thoughts.
The truth is, he is still autistic, and part of being autistic means that social interaction really isn't at the top of his list. At that moment, no, I didn't need those cards to show me his thoughts. I could see them. Right then I was almost positive he was thinking that he'd prefer that I throw away those cards and leave him to sit alone in his room so that he can play with his favorite vacuum in peace.
He knew how to use those cards. He was just being non-compliant in an effort to get me to leave.
"Last question," I said to him. "Do you want me to go away?" I asked.
"YES!" he pointed and said emphatically.
Well, I guess the cards worked on that one. Deciding to end on a positive note (I think?), I got up and walked away, leaving him alone with his vacuums and his thoughts for a moment longer.
I like Hollywood conclusions, the chick flick that finishes with a nice, neat package and a pretty bow resting on top. I want warm, fuzzy and happy.
And I want it now.
A few months ago, I posted about a breakthrough our son had experienced with his new speech therapist using "Yes" and "No" picture symbols. (CLICK HERE to read about it). After that post, I had visions of riding off into the sunset and soon having real conversations with our older son.
I'm still waiting.
These two magic cards...
I started carrying those cards in the pockets of my pants when our son was home so that they were handy.
"All done!" is what he'd tell me any time I'd pull them out. Translation: I'm at home mom. Home is not school. Put those away.
Fed up one day and refusing to be bossed around by a ten-year-old, I pressed forward, letting him know that I realized he was tired from school but that he was going to answer just five questions.
He answered, but he answered all five questions in the affirmative. Something just seemed fishy to me. On a whim, I decided to test him.
"Is my name Bertha?" I asked. (It's not.)
"Yes," he pointed to that card and also vocalized. That stinker.
"Aw, c'mon! You can give me a better effort than that!" I prodded. "Tell me, is your name Fred?" I asked. (It is not.)
"Yes," he again pointed and vocalized.
Go away, he was saying to me. I don't want to talk to you.
While I did't take this slight personally, I was disappointed. I had wrongfully assumed that once we found an avenue of communication to which our son related, then we would be propelled forward by leaps and bounds.
I envisioned opening the flood gates, asking and answering ten years of questions that I've had about my very own child. I wanted to hear his thoughts.
The truth is, he is still autistic, and part of being autistic means that social interaction really isn't at the top of his list. At that moment, no, I didn't need those cards to show me his thoughts. I could see them. Right then I was almost positive he was thinking that he'd prefer that I throw away those cards and leave him to sit alone in his room so that he can play with his favorite vacuum in peace.
He knew how to use those cards. He was just being non-compliant in an effort to get me to leave.
"Last question," I said to him. "Do you want me to go away?" I asked.
"YES!" he pointed and said emphatically.
Well, I guess the cards worked on that one. Deciding to end on a positive note (I think?), I got up and walked away, leaving him alone with his vacuums and his thoughts for a moment longer.
Friday, April 27, 2012
He signed his name with an "X"
He signed his name with an "X".
This was my great, great, great grandfather, and I was reading a stack of affadavits years ago, statements submitted to the government to prove that he was injured while in active service during the Civil War. With these papers, he was fighting for his pension.
There were statements about his life before the war, of the years during his service and also about his quality of life once his service was complete. A variety of people had submitted their written voice to his cause, some scribed by legal counsel, others by those who issued the statements themselves. All were signed and dated at the bottom.
On the signature line at the bottom of my great, great, great grandfather's statements sat a solitary "X".
Reading these papers years ago before I became a wife and mother, I poured over the story that told of my forefather--a cobbler, a husband, a parent and a soldier. This person and the life that he led all came down to a simple "X" on the signature line at the bottom of each page.
There were so many things that this person could do, but he could not write. That "X" on the signature line, representative of the name, but not representative of the person.
I thought of that "X" last week when my husband and I were in our kitchen.
"I wonder what he's thinking when he writes like that," my husband said to me, referring to our ten-year-old's signature which I proudly displayed on our refrigerator. Some letters were huge. Some were not. Some letters were capitalized. Some were not.
That signature, simlar to that "X" of our long-ago relative, looked like the work of a preschooler.
"I think it is a means to an end," I answered him. As it is for a lot of kids with autism, the fine motor control it takes to effectively put pen or pencil to paper is a monumental task.
Some look at the letters our son produces and automatically assume that he isn't capable of much thinking. I've even watched people working with our son decrease their level of interaction with him due to the jeuvenile appearance of his writing. They've even broken into alphabet songs while they work.
Please, people. This is not an IQ test. It's only handwriting.
Perhpas my ancestor would have liked to have been able to sign his name. I don't know. I'm pretty sure that our son would prefer to use an "X". Either way, for some people, writing is not indicative of who they are. It's just not their thing.
This entry was written in response to the letter prompt "X" in the blogging A to Z Challenge April 2012.
**********
Visit MorgueFile for your photographic blogging needs--free of charge and free for public use.
Thursday, April 26, 2012
Wet
Standing at our kitchen island, I was tending to something on the stove one day when in walked our older son, oh-so-casually, naked from the waist down.
"Excuse me, kind sir," I said to him, "just where are your pants?"
"Wet," he said as he set about picking out a cup from the cup drawer and filling it with water.
Wet? From what? I was just with him two minutes ago. All was dry in this household. Younger brother had been spewing the weather forecast ad nauseum for the past five days, and there was no rain in sight.
His morning bus was about to arrive to take him to school. I didn't have time for his nudity.
All of a sudden I thought, oh dear, did I hear him in the bathroom? I made my way to the loo, all the while thinking, please, oh, please, oh, please, oh, please...whew! Toilet was all clear.
So, what gives?
I grabbed a pair of clean underpants from the basket of extras I keep in the bathroom--because I'm not stupid--when I saw his used undies and pants lying on the floor under the sink. Bravely, I went in to investigate.
He must have been getting a drink from the bathroom sink. Perhaps he thought he dripped onto his pants? However, truly, those pants were dry. They were. I found nothing there. NOTHING.
Yelling our son's first and last names at the top of my lungs, I ordered him back to the scene of the crime in order to PUT HIS PANTS BACK ON. There was clearly nothing wrong here, and it was time for school.
I waited.
FIRST-AND-LAST-NAME-SON YOU GET YOUR FANNY IN HERE RIGHT NOW AND PUT YOUR PANTS ON. We are NOT animals in this house. Cave people, perhaps. Animals, not a chance.
I waited.
Seething, I clenched his pants in my fist and marched back into the kitchen where he stood motionless, his eyes large with fear.
"Wet," he said softly.
"These are not wet!" I said extremely frustrated. "Now, put them on!"
He didn't move. He was throwing down the gauntlet. In my eyes, this meant battle. I put those pants on him. I put them on him so fast he didn't know what hit him. I did it with sass, I looked him in the eyes to show him who was boss, and I walked away for dramatic effect.
He took off his pants.
Sigh. I grabbed them. I searched. I searched long and hard. But for some droplets of humidity that might have landed within its fibers, there was no wetness anywhere on those pants. Not that I could tell. No way.
"GET YOUR PANTS ON!" I told him sternly. Clothing was not optional at school.
He didn't move.
With the voice inside my head swearing up a storm, I approached him with those pants; however, this time he was ready. No sooner did I get one leg on than he would take it off. We struggled. Pants on. Pants off. Pants on. Pants off.
Until finally, pants on.
I put those pants on him with authority, and I told him sternly to KEEP THOSE PANTS ON HIS BODY.
That's when I saw it. So unassuming. So small. The resting place of a tiny droplet of water that must have landed upon the thigh of his pants when he was getting water in the bathroom. Sure, it was nearly dry at this point, but you tell a sensory defensive child that something he doesn't like to wear is really "okay".
Go ahead. I dare you.
So many times during my journey of being a conventional mom to unconventional kids, I catch myself, as an observer to their ways, reacting--reacting with thoughts about what I think should be happening based upon how I expect life to go. Instinctively, I am not autistic. Instinctively, my children are.
I'm getting quicker with my response system, with being able to adopt their perspective so that I can help them grow in this world. But, well, sometimes the switch isn't so seamless.
This entry was brought to you by the letter prompt "W" in the Blogging A to Z April 2012.
"Excuse me, kind sir," I said to him, "just where are your pants?"
"Wet," he said as he set about picking out a cup from the cup drawer and filling it with water.
Wet? From what? I was just with him two minutes ago. All was dry in this household. Younger brother had been spewing the weather forecast ad nauseum for the past five days, and there was no rain in sight.
His morning bus was about to arrive to take him to school. I didn't have time for his nudity.
All of a sudden I thought, oh dear, did I hear him in the bathroom? I made my way to the loo, all the while thinking, please, oh, please, oh, please, oh, please...whew! Toilet was all clear.
So, what gives?
I grabbed a pair of clean underpants from the basket of extras I keep in the bathroom--because I'm not stupid--when I saw his used undies and pants lying on the floor under the sink. Bravely, I went in to investigate.
He must have been getting a drink from the bathroom sink. Perhaps he thought he dripped onto his pants? However, truly, those pants were dry. They were. I found nothing there. NOTHING.
Yelling our son's first and last names at the top of my lungs, I ordered him back to the scene of the crime in order to PUT HIS PANTS BACK ON. There was clearly nothing wrong here, and it was time for school.
I waited.
FIRST-AND-LAST-NAME-SON YOU GET YOUR FANNY IN HERE RIGHT NOW AND PUT YOUR PANTS ON. We are NOT animals in this house. Cave people, perhaps. Animals, not a chance.
I waited.
Seething, I clenched his pants in my fist and marched back into the kitchen where he stood motionless, his eyes large with fear.
"Wet," he said softly.
"These are not wet!" I said extremely frustrated. "Now, put them on!"
He didn't move. He was throwing down the gauntlet. In my eyes, this meant battle. I put those pants on him. I put them on him so fast he didn't know what hit him. I did it with sass, I looked him in the eyes to show him who was boss, and I walked away for dramatic effect.
He took off his pants.
Sigh. I grabbed them. I searched. I searched long and hard. But for some droplets of humidity that might have landed within its fibers, there was no wetness anywhere on those pants. Not that I could tell. No way.
"GET YOUR PANTS ON!" I told him sternly. Clothing was not optional at school.
He didn't move.
With the voice inside my head swearing up a storm, I approached him with those pants; however, this time he was ready. No sooner did I get one leg on than he would take it off. We struggled. Pants on. Pants off. Pants on. Pants off.
Until finally, pants on.
I put those pants on him with authority, and I told him sternly to KEEP THOSE PANTS ON HIS BODY.
That's when I saw it. So unassuming. So small. The resting place of a tiny droplet of water that must have landed upon the thigh of his pants when he was getting water in the bathroom. Sure, it was nearly dry at this point, but you tell a sensory defensive child that something he doesn't like to wear is really "okay".
Go ahead. I dare you.
So many times during my journey of being a conventional mom to unconventional kids, I catch myself, as an observer to their ways, reacting--reacting with thoughts about what I think should be happening based upon how I expect life to go. Instinctively, I am not autistic. Instinctively, my children are.
I'm getting quicker with my response system, with being able to adopt their perspective so that I can help them grow in this world. But, well, sometimes the switch isn't so seamless.
This entry was brought to you by the letter prompt "W" in the Blogging A to Z April 2012.
Wednesday, April 25, 2012
GBE2: A Fresh Look
It's "Fresh Look" week at Group Blogging Experience 2 (GBE2) !
With the frenzy of the A to Z Challenge this month, my neglected blogging group has suggested that we bring out an old post, shake off the dust and give it a second look. Whew! I think I can do this!
I pulled up my old posts and quickly learned that I don't enjoy reading them. Cringeworthy. So, I closed my eyes, pointed, and randomly picked this post which ran April 12, 2011. I remember it like it was yesterday. Wait, I think that did happen yesterday...and this morning...
"Morning Chatter"
"Can I tell you what? Frogs are weird. Oh, and, by the way, if I were a planet, I would NOT want to be located near the sun. NO WAY! CR-AAZZZYYY!"
I can tell it is going to be one of those mornings. Our younger son has rightfully earned his nickname of Chatty Charlie. He's even moved a chair into the kitchen so that he can have his one-man conversation beside me as I make waffles and prepare his brother for school.
"You wanna know my favorite 'Looney Tunes' episode? Well, uh, I don't quite remember. But 'Pokemon' is quite nice. I wonder if 'Pokemon' was playing on the Titanic when it was sinking? That would be cooool. Wouldn't that be cool? Yeah, that would be sooo cooool."
I love him, but my left eye is starting to twitch. I find it very difficult to engage in insane conversations when he doesn't even want my input.
"Those people in 'Twister' were crazy, by the way. They went into the barn when the tornado was headed right for the barn. They were crazy. Simply crazy. Everyone knows that you need to find a ditch and lie down. Why go into the barn? They are about as crazy as that guy on 'Storm Chasers' yesterday. Insane. And, can I tell you what? I think our rocks are really old. They are the color of old. Garsh, your skin is about the same color as our rocks! Huh!"
Gee that's nice to know.
"Can I tell you what? Dad is fat. I don't even think a tornado could lift him."
"Well, maybe not an F1, but I think Dad can be moved by other tornadoes." My only contribution to the conversation. You can thank me later, dear.
"What if an F5 sucked all of us into outer space? I hope we wouldn't run into a black hole. And, again, I ABSOLUTELY don't want to be near the sun. And, can I tell you what? If I could live in my Super Mario Brothers game, I would want to live on level five. It rules."
So far, he has not come up for air. There isn't enough coffee in the world to have me prepared for this first thing in the morning. I want to tape his mouth. A cork? ANYTHING! So, I fixed him breakfast, thinking food will quiet him. but the thoughts were apparently too much to keep in his head. He ate roamed, following me as I did my pre-school chores.
"Can I tell you what? Your coffee smells gross. I will never drink coffee. I bet monsters drink coffee or monster trucks. Monster trucks probably use coffee for fuel. You are drinking truck juice! Hahahaha! Gross! I bet the Titanic could have run on coffee."
He gets out a plastic boat and a tuperware container. Water play.
"This was the angle of the Titanic when it sank. When this much water was on its deck, there were still people stuck on board. Can I tell you what? I'll just start from the beginning and teach you the whole thing."
All this before the morning bus.
With the frenzy of the A to Z Challenge this month, my neglected blogging group has suggested that we bring out an old post, shake off the dust and give it a second look. Whew! I think I can do this!
I pulled up my old posts and quickly learned that I don't enjoy reading them. Cringeworthy. So, I closed my eyes, pointed, and randomly picked this post which ran April 12, 2011. I remember it like it was yesterday. Wait, I think that did happen yesterday...and this morning...
"Morning Chatter"
"Can I tell you what? Frogs are weird. Oh, and, by the way, if I were a planet, I would NOT want to be located near the sun. NO WAY! CR-AAZZZYYY!"
I can tell it is going to be one of those mornings. Our younger son has rightfully earned his nickname of Chatty Charlie. He's even moved a chair into the kitchen so that he can have his one-man conversation beside me as I make waffles and prepare his brother for school.
"You wanna know my favorite 'Looney Tunes' episode? Well, uh, I don't quite remember. But 'Pokemon' is quite nice. I wonder if 'Pokemon' was playing on the Titanic when it was sinking? That would be cooool. Wouldn't that be cool? Yeah, that would be sooo cooool."
I love him, but my left eye is starting to twitch. I find it very difficult to engage in insane conversations when he doesn't even want my input.
"Those people in 'Twister' were crazy, by the way. They went into the barn when the tornado was headed right for the barn. They were crazy. Simply crazy. Everyone knows that you need to find a ditch and lie down. Why go into the barn? They are about as crazy as that guy on 'Storm Chasers' yesterday. Insane. And, can I tell you what? I think our rocks are really old. They are the color of old. Garsh, your skin is about the same color as our rocks! Huh!"
Gee that's nice to know.
"Can I tell you what? Dad is fat. I don't even think a tornado could lift him."
"Well, maybe not an F1, but I think Dad can be moved by other tornadoes." My only contribution to the conversation. You can thank me later, dear.
"What if an F5 sucked all of us into outer space? I hope we wouldn't run into a black hole. And, again, I ABSOLUTELY don't want to be near the sun. And, can I tell you what? If I could live in my Super Mario Brothers game, I would want to live on level five. It rules."
So far, he has not come up for air. There isn't enough coffee in the world to have me prepared for this first thing in the morning. I want to tape his mouth. A cork? ANYTHING! So, I fixed him breakfast, thinking food will quiet him. but the thoughts were apparently too much to keep in his head. He ate roamed, following me as I did my pre-school chores.
"Can I tell you what? Your coffee smells gross. I will never drink coffee. I bet monsters drink coffee or monster trucks. Monster trucks probably use coffee for fuel. You are drinking truck juice! Hahahaha! Gross! I bet the Titanic could have run on coffee."
He gets out a plastic boat and a tuperware container. Water play.
"This was the angle of the Titanic when it sank. When this much water was on its deck, there were still people stuck on board. Can I tell you what? I'll just start from the beginning and teach you the whole thing."
All this before the morning bus.
Videos
"Pix," our son often says to me regarding a member of his beloved video collection as he hands me a pile of crumpled film.
He has more videos than I can count. In this digital age, our son is stuck in the land of VHS. They are easy to manipulate. They are easy to stop, forward, stop and rewind. In short, they are a stimmer's dream.
He was six years old when he first decided that he wanted to actually SIT DOWN for any length of time and watch TV. It was during a "vacation" from school, and I was so fried that I was sure this act was a gift straight from God.
He actually sat. And, he actually watched.
What I learned was that he preferred videos that had clips of real kids--kids laughing, talking, playing. And, he would play those parts over and over and over and over again. He laughed with them. Yes, I knew that the behavior wasn't all that typical or perhaps wasn't all that "good", but it showed progress. I let it happen.
That, my friends, is what you would call a slippery slope. Five years later, those VHS tapes have made their way into our son's bedroom.
They are there, mocking the young parent in me that said she would never let her child have a television in his room. They sit there, collecting dust, getting stepped upon and broken.
Resting upon the ledge of his bed.
Waiting on the table beside his bed.
Spilling over onto the floor beside his bed.
He loves them so much that he loves them to death. He'll kiss the various logos imprinted on their cases. He'll gently play with the film, moving it between his fingers. Over time, they start to protest. They wear. The cases crack, and the film breaks.
"Pix," I hear all the time.
Born in a moment of desperation, my husband gave me a crash course on dismembering one of those tapes, splicing the film and reconnecting it. I know the mechanics pretty darned well, and now, I'm a slave to VHS.
After school. Before the morning bus. At 3am.
"Pix," I hear in the dead of night.
Ever-awake, he'll watch his videos to pass the time. It's just that those darned things always break in the middle of the night. Or they get lost. Or they get stuck in his bazillion-year-old machine.
"Pix! Mamamommy," I hear all day long.
I've actually stockpiled his favorite videos. After all, they don't cost much these days. However, when he falls in love with a particular (cracked) casing or a specific (outdated) film, well, then it gets tricky.
Darling husband/SuperGeek is working on a better system--in all of his spare time. I know something is brewing in that head of his, but bringing that plan to fruition isn't high on the list of priorities.
Until the time a better solution arrives, here I sit, half buried under a pile of videos, cutting, splicing, gluing and willing them to work for just a little while longer.
This entry was written in response to the letter prompt "V" in the Blogging A to Z Challenge 2012.
Tuesday, April 24, 2012
Under
I'm trying desperately to write something brilliant.
My husband has essentially kicked me out of my Mom Cave (which is his original Man Cave). Boo Hoo. Okay, don't feel too sorry for me. He's so geek-a-licious that he resurrected a laptop of mine that crashed in 2009. Since that time, my only option was to brave the stank of his lair or to blog on my phone.
Problem is, I kind of got used to his lair. I ignored his boy yuck. I pretended that it was my spaaaaaa. Ahhhhhh.
My Mom Cave. My reprieve during the day. A place where I can sneak away from the Little Cave People when they aren't looking. A place where I can breathe.
Wanna know where the laptop is? In the kitchen. Is this my lair?
IS IT????
Grrrrr.
But, you can blog and see the kids,my husband one would argue. However, the problem with being able to see the kids is that they can also see me.
Here's an example:
This is what is going on right now. Under my chair. This is all happening right now as I'm trying my best to think, to feel and to write.
This. This is what is going on under there. The second I sit, they are drawn to me like a moth to a flame. They are loud. They are energetic. And, they are distracting.
Down there. Under my chair.
Up here, I am trying...to...focus...on writing about life.
Down there, under my chair, they are living it.
This entry was written in response to the letter prompt "U" in the Blogging A to Z Challenge 2012.
My husband has essentially kicked me out of my Mom Cave (which is his original Man Cave). Boo Hoo. Okay, don't feel too sorry for me. He's so geek-a-licious that he resurrected a laptop of mine that crashed in 2009. Since that time, my only option was to brave the stank of his lair or to blog on my phone.
Problem is, I kind of got used to his lair. I ignored his boy yuck. I pretended that it was my spaaaaaa. Ahhhhhh.
My Mom Cave. My reprieve during the day. A place where I can sneak away from the Little Cave People when they aren't looking. A place where I can breathe.
Wanna know where the laptop is? In the kitchen. Is this my lair?
IS IT????
Grrrrr.
But, you can blog and see the kids,
Here's an example:
This is what is going on right now. Under my chair. This is all happening right now as I'm trying my best to think, to feel and to write.
This. This is what is going on under there. The second I sit, they are drawn to me like a moth to a flame. They are loud. They are energetic. And, they are distracting.
Down there. Under my chair.
Up here, I am trying...to...focus...on writing about life.
Down there, under my chair, they are living it.
This entry was written in response to the letter prompt "U" in the Blogging A to Z Challenge 2012.
Monday, April 23, 2012
"Toot"
I had plans for "T", I truly did. Perhaps they were slower to come to me than some of the other letters in this month's A to Z Challenge, but, alas, sweet relief, the words did start to flow from my fingertips.
And then, just about thirty minutes ago, our older son threw me a curve ball.
He had just arrived home from an outing with his father and brother (thank you, kind husband, for the reprieve), when in the door he bound straight toward me with a purpose.
"Toot," he said, bringing my fingers to his mouth.
I'm the Uh-Oh Person in this house. I'm also the Ouch Person, the I-Can't-Find-It Person, the He-Did-This Person and, of course, the I'm-Hungry Person. But, I think that's all another post, isn't it? Okay. Focusing.
With my fingers shoved into his mouth, a place I'm still not sure is safe, I decided it was logical to check the status of his emerging molar. It likely hurt.
"Uh-oh," I said to him, "does it hurt?"
"Toot ouch," he said as he began to wander aimlessly around the kitchen. I had been working on his cocktail of medication for bedtime. He searched the bag of medications. What was he doing?
"What do you want, buddy?" I asked.
No answer. He opened the drawer where I keep first aid supplies. I didn't think he even noticed that drawer. My husband asked if he wanted a bandage. Whatever.
Then he walked over to the cabinet of out -of-reach medication. You mean he knows about that cabinet also? Really? He beckoned for me to pull out each bin as he inspected boxes of cold medicines. Nope. Whatever he wanted wasn't there.
"Toot. Rice. Ouch," he said looking at me.
Rice....rice...where the heck does rice come into play?
"Hon, did he eat rice in the car?" I asked my husband, trying to make sense of it all.
"I don't know. Maybe he found some old rice on the floor," he answered. And, by the way, my dear husband said that to me so casually. He said that like it was normal, in a eating-from-the-floor-of-a-fraternity-house kind-of-way. But, I'm digressing again, aren't I? Okay. Re-focusing.
And, so, with the disgusting reality that our son had found a hardened piece of old rice on the dirty floor of our dirty van and put it in his mouth, it became clear that said rice was lodged in his tooth. Ugh.
Have you ever tried to get something out from between a sensory sensitive individual's teeth?
I flashed back to the days of having to pin him to the ground in order to get anything--a brush or a soon-to-be bitten finger--into his mouth. I could hear the screaming as he groped and crawled his way into a fetal position in the corner on the floor of the dentist's office, all the while the dentist was calming chanting, "You are okay. You are okay."
But that was not to come to pass today. Our big guy was searching the kitchen for a "toot peck". And, when my husband found one, down he sat, pulling me to his side for help. He needed me some, but he also worked independently. When he did so, I sat back and breathed it in--how casual and effortless he wore his progress! The simple action of using that toothpick was a giant step forward after years of seemingly no steps at all.
Keep the faith, fellow parents. Progress does happen.
"Toot." It's quite clear that no other t-word is going to hold a candle to that one in our house today. Perhaps I'll save the other ideas for some future rainy day here in the Mom Cave.
This entry was in response to the letter prompt "T" in the Blogging A to Z April 2012.
And then, just about thirty minutes ago, our older son threw me a curve ball.
He had just arrived home from an outing with his father and brother (thank you, kind husband, for the reprieve), when in the door he bound straight toward me with a purpose.
"Toot," he said, bringing my fingers to his mouth.
I'm the Uh-Oh Person in this house. I'm also the Ouch Person, the I-Can't-Find-It Person, the He-Did-This Person and, of course, the I'm-Hungry Person. But, I think that's all another post, isn't it? Okay. Focusing.
With my fingers shoved into his mouth, a place I'm still not sure is safe, I decided it was logical to check the status of his emerging molar. It likely hurt.
"Uh-oh," I said to him, "does it hurt?"
"Toot ouch," he said as he began to wander aimlessly around the kitchen. I had been working on his cocktail of medication for bedtime. He searched the bag of medications. What was he doing?
"What do you want, buddy?" I asked.
No answer. He opened the drawer where I keep first aid supplies. I didn't think he even noticed that drawer. My husband asked if he wanted a bandage. Whatever.
Then he walked over to the cabinet of out -of-reach medication. You mean he knows about that cabinet also? Really? He beckoned for me to pull out each bin as he inspected boxes of cold medicines. Nope. Whatever he wanted wasn't there.
"Toot. Rice. Ouch," he said looking at me.
Rice....rice...where the heck does rice come into play?
"Hon, did he eat rice in the car?" I asked my husband, trying to make sense of it all.
"I don't know. Maybe he found some old rice on the floor," he answered. And, by the way, my dear husband said that to me so casually. He said that like it was normal, in a eating-from-the-floor-of-a-fraternity-house kind-of-way. But, I'm digressing again, aren't I? Okay. Re-focusing.
And, so, with the disgusting reality that our son had found a hardened piece of old rice on the dirty floor of our dirty van and put it in his mouth, it became clear that said rice was lodged in his tooth. Ugh.
Have you ever tried to get something out from between a sensory sensitive individual's teeth?
I flashed back to the days of having to pin him to the ground in order to get anything--a brush or a soon-to-be bitten finger--into his mouth. I could hear the screaming as he groped and crawled his way into a fetal position in the corner on the floor of the dentist's office, all the while the dentist was calming chanting, "You are okay. You are okay."
But that was not to come to pass today. Our big guy was searching the kitchen for a "toot peck". And, when my husband found one, down he sat, pulling me to his side for help. He needed me some, but he also worked independently. When he did so, I sat back and breathed it in--how casual and effortless he wore his progress! The simple action of using that toothpick was a giant step forward after years of seemingly no steps at all.
Keep the faith, fellow parents. Progress does happen.
"Toot." It's quite clear that no other t-word is going to hold a candle to that one in our house today. Perhaps I'll save the other ideas for some future rainy day here in the Mom Cave.
This entry was in response to the letter prompt "T" in the Blogging A to Z April 2012.
Saturday, April 21, 2012
Spell
"I'm sending you a book," my friend from Finland texted to me a few years ago. She is our older son's Godmother. "Honestly, you simply have to read it."
Sigh. Oh boy. A book? Really?
This woman is my heart. But, geez, how the heck am I expected to read something while running after these kids with my pants on fire?
The book arrived in no time. Drat. Shouldn't international mail still use boats or something?
I opened the envelope, and my heart actually sank. Ugh. It was about autism. Every day, I live autism. Every day, my kids live autism. In our best moments, we have triumphed over autism. In our proud moments, we are celebrating autism. In our worst moments, we are living through autism. Autism keeps us from sleeping. Day and night I look to the Internet to help me with something about autism.
How can I find any more energy in me to devote to autism? Why would I want to? Putting trust in my friend, I explored the cover, and it beckoned to me. Opening the first few pages, I was hooked.
I saw our older son in this book.
So far, in my journey as this child's mother, I'm sad to say that he has always been the extreme, the inigma, the most complex. He's always been the trickiest, the one that was the hardest to handle. My husband and I had no idea what we were facing. Was this good or bad? Did this mean we had more raw material to work with or less? Was our son in there? We'd never really seen any signs.
I read the book voraciously.
Two mothers, two countries, joined together by their sons and autism. One mother, self taught and living overseas, found a way to communicate with her child. The other was creative in finding outside resources for her son. One of those resources was this mom in another country.
It was a journey of friendship, of bonding together for a cause, of autism and of education. It was a story of hope. In this day where not much is known about autism, there are so many theories floating around about causes and treatments. So many methods of education. So many MONEY SUCKERS. It's very easy to lose hope. I was weary from the daily battles and the large attempts to find our magic bullet.
I was weary but not beaten.
And, so, when I read in this book about how a mom started communicating with her child by writing the alphabet down on a sheet of paper and teaching him to spell words...I was intrigued.
When I learned that the sheet of paper then progressed to a computer keyboard, I was hopeful.
When I read the poetry that this nonverbal child was able to express through the use of his computer, I was overcome with emotion.
Quickly, I pulled out a piece of plain, white paper and scribbled a rough rendering of the alphabet, and I took it to our son.
"Spell your name," I said to him.
He pointed, and..he..spelled...his...name! Then, for good measure, he spelled it backwards.
"Spell 'rice'," I said.
And he did.
"Spell 'mall'," I said.
And he did.
I set down the sheet of paper and looked into the eyes of our child, knowing we had yet to scratch the surface of who he really is.
For more information about the book mentioned in the post, click HERE
***********************
This entry was written in response to the letter prompt "S" in the Blogging A to Z April 2012.
Sigh. Oh boy. A book? Really?
This woman is my heart. But, geez, how the heck am I expected to read something while running after these kids with my pants on fire?
The book arrived in no time. Drat. Shouldn't international mail still use boats or something?
I opened the envelope, and my heart actually sank. Ugh. It was about autism. Every day, I live autism. Every day, my kids live autism. In our best moments, we have triumphed over autism. In our proud moments, we are celebrating autism. In our worst moments, we are living through autism. Autism keeps us from sleeping. Day and night I look to the Internet to help me with something about autism.
How can I find any more energy in me to devote to autism? Why would I want to? Putting trust in my friend, I explored the cover, and it beckoned to me. Opening the first few pages, I was hooked.
I saw our older son in this book.
So far, in my journey as this child's mother, I'm sad to say that he has always been the extreme, the inigma, the most complex. He's always been the trickiest, the one that was the hardest to handle. My husband and I had no idea what we were facing. Was this good or bad? Did this mean we had more raw material to work with or less? Was our son in there? We'd never really seen any signs.
I read the book voraciously.
Two mothers, two countries, joined together by their sons and autism. One mother, self taught and living overseas, found a way to communicate with her child. The other was creative in finding outside resources for her son. One of those resources was this mom in another country.
It was a journey of friendship, of bonding together for a cause, of autism and of education. It was a story of hope. In this day where not much is known about autism, there are so many theories floating around about causes and treatments. So many methods of education. So many MONEY SUCKERS. It's very easy to lose hope. I was weary from the daily battles and the large attempts to find our magic bullet.
I was weary but not beaten.
And, so, when I read in this book about how a mom started communicating with her child by writing the alphabet down on a sheet of paper and teaching him to spell words...I was intrigued.
When I learned that the sheet of paper then progressed to a computer keyboard, I was hopeful.
When I read the poetry that this nonverbal child was able to express through the use of his computer, I was overcome with emotion.
Quickly, I pulled out a piece of plain, white paper and scribbled a rough rendering of the alphabet, and I took it to our son.
"Spell your name," I said to him.
He pointed, and..he..spelled...his...name! Then, for good measure, he spelled it backwards.
"Spell 'rice'," I said.
And he did.
"Spell 'mall'," I said.
And he did.
I set down the sheet of paper and looked into the eyes of our child, knowing we had yet to scratch the surface of who he really is.
For more information about the book mentioned in the post, click HERE
***********************
This entry was written in response to the letter prompt "S" in the Blogging A to Z April 2012.
Friday, April 20, 2012
Rusty
This is our pooch. His quite simply the BEST...DOG...EVER.
We welcomed Rusty into our home a few months after losing both of our dogs within three weeks of one another. One of those dogs was our older son's best friend. (You can read about our son's First Love in this early Mom Cave post HERE.)
"We're getting you a dog," my mother said to me over the telephone. "You need to have a dog."
She was right. We are dog people, and our house had felt so empty after the loss of our last two pets so close together. Not only did our house feel empty, but we felt empty as well.
Chosen by my sister, who breeds and shows dogs, and with the help of my nephews and niece, Rusty was born to be in our home! Our family was telling us that we needed a dog and that this was the dog! They all agreed. He had all the perfect traits for survival in a house like ours.
It was meant to be, and it was exciting.
Our younger son and I hopped into the van one day and drove to West Virginia where my family and Rusty lived. We were going to collect our puppy and bring him to New York to live! It was an adventure we both still remember--the day we met our dog. And, as sad as it was to lose our trusted friends before him, life began anew with this little rusty ball of fluff.
I had high hopes for bringing Rusty into our home. After all, our older son had such a strong connection to one of our last dogs. I wanted desperately to find a pet connection for him again. (Did I mention that you can read about his First Love in an old Mom Cave post HERE?)
He liked Rusty. It was slow at first. Slow and steady. But, one day, he gathered the nerve to pet him. And, then, he said, "Rusty. Bed."
Upstairs we went, where Rusty was placed under the covers of our older son's bed. Why? I don't know. A calm and patient dog, Rusty obliged, but I stayed to be sure that he had air and a friendly hand to pet his back while he dutifully stayed beneath the covers. Heaven forbid I tried to move those covers.
Rusty sat patiently.
"Mama, go!" our son said.
"No," I told him. "Mama is staying for Rusty." Sorry, kid, but I don't want you to love this dog to death! I stayed, my heart warmed by the prospect of growing friendship.
One day, my neighbor dropped off her two dogs on her way out of town. They were busy little Shih-tzus in need of an emergency sitter while their owners vacationed.
Sigh. Sure. I guess.
Seven days turned into ten, and the busy little Shih-tzus barked and clickety-clicked their toenails on the floor. They ran in circles and scratched to go outside. Oh, for any of us, they would have been simply fine. However, they sent our older son over the edge.
"Outside, please!" he'd say urgently any time he stepped to the threshold of the room where they were. "All done! OUTSIDE, PLEASE!" His hands covered his ears and his eyes were closed tightly.
I understood. I'm middle-aged, and I can't stand bugs. Nobody is going to talk me into liking them, either. I wasn't going to even try to tell this kid that he was okay. He clearly wasn't. So, I let the dogs out.
I've been letting the dogs out every since.
It was as though the busy little Shih-tzus had busy little Shih-tzu cooties that they spread all over our beloved dog. And, now he's been ostracised. The sight of him. The smell of him. The sound of him. Everything about our dog was now offensive to our child.
Fear of dogs and other animals is not uncommon for children with autism and is something that can be overcome with a proper desenitization program. I was just disheartened to go from such complete love in dogs with one of our last pets to complete and absolute fear. (Have you read that POST yet? Giggle.)
Where was the common ground?
You mean, where do we find common ground while we're waiting for a desensitization program to float to the top of our list that is a gazillion points long?
The family room. Definitely the family room, which is clear on the far end of the house where our canine can lounge with our younger son, chew on his toys and spot squirrels in the back yard--all while tucked away behind a gate so that our older son can see that the dog is not going to jump out and get him.
This entry was written in response to the letter prompt "R" in the Blogging A to Z Challenge April 2012.
Thursday, April 19, 2012
Quiet
The old man across the street has moved back into his home.
Recently, after his wife died, he decided to sell his house and move into a retirement community. It was a new stage of life. He was ready.
I've often watched this man and his wife during the past ten years. They had to be in their eighties. They didn't leave their home much, but, then again, with all the therapy happening in our house, neither did I.
Over the years, there has been so much chaos around me. So much activity. So many fires to put out. So much noise. And, often as I was running from therapy for one son in one room to therapy for another son in another room, I would catch sight of the old man through our kitchen window.
Bent at the waist and shuffling, he would see the second the mailman arrived. He always knew. Was he watching for the mail? Did he wait? Was that part of his day, waiting for the mail? I would sigh and think about the quiet life of waiting for the mail.
These neighbors had a son around my age. I'm not sure exactly of his diagnosis, but I did know that he was living in a psychiatric care unit in town. In time, this son was no longer able to visit the couple. Was he too large and strong for them? Too volatile? All of the above? I'm not sure.
Two years ago, the old man's wife died. Her health had been failing. He buried her and returned to his house, now empty. And, he continued to live there, shuffling out to the mailbox when the mailman arrived with his daily mail.
We would wave or chat once in a blue moon.
One day a "For Sale" sign appeared in his yard, and he hired a company to help him clear forty years of life out of his house. Within two weeks, he was onto his new stage of life, and the house sat empty while life continued to swirl around me here across the street. I would pass by my kitchen window and miss seeing the old man as the mail arrived each day.
After three months, the "For Sale" sign came down, and our former neighbor returned. He couldn't cover the cost of both a house that didn't sell and the retirement home. So, he returned and was here to stay.
I brought him dinner. I left the kids in the house for too long with someone who wasn't fully prepared, I crossed our street and I rang his doorbell. Stepping into his home, I entered hallways of memories of a long life. About to turn ninety, he was hanging once more the pictures of loved ones who were no longer with him.
No wife. No visiting children. Just a kind old man with time on his hands enough to watch for the mailman.
I stayed for a while--too long, not wanting to think of what our kids were doing to the poor respite worker across the street in our own home. I knew whatever was happening, it was going to be chaotic. And, perhaps chaotic was not so bad.
I had been spending a good bit of time mentally wishing away the present, hoping for the days when life would quiet down for us. Now I was thinking that, perhaps there was such a thing as a life that was too quiet.
An hour later, we ended our visit, and I made my way across the street, hoping the old man could stretch dinner into a couple lunches as well. Leftovers are always a good thing.
So, too, I decided, was living in the moment.
This entry was written in response to the letter prompt "Q" in the Blogging A to Z Challenge 2012.
**************************
Visit MorgueFile for all your photographic blogging needs--free of charge and free for public use.
Recently, after his wife died, he decided to sell his house and move into a retirement community. It was a new stage of life. He was ready.
I've often watched this man and his wife during the past ten years. They had to be in their eighties. They didn't leave their home much, but, then again, with all the therapy happening in our house, neither did I.
Over the years, there has been so much chaos around me. So much activity. So many fires to put out. So much noise. And, often as I was running from therapy for one son in one room to therapy for another son in another room, I would catch sight of the old man through our kitchen window.
Bent at the waist and shuffling, he would see the second the mailman arrived. He always knew. Was he watching for the mail? Did he wait? Was that part of his day, waiting for the mail? I would sigh and think about the quiet life of waiting for the mail.
These neighbors had a son around my age. I'm not sure exactly of his diagnosis, but I did know that he was living in a psychiatric care unit in town. In time, this son was no longer able to visit the couple. Was he too large and strong for them? Too volatile? All of the above? I'm not sure.
Two years ago, the old man's wife died. Her health had been failing. He buried her and returned to his house, now empty. And, he continued to live there, shuffling out to the mailbox when the mailman arrived with his daily mail.
We would wave or chat once in a blue moon.
One day a "For Sale" sign appeared in his yard, and he hired a company to help him clear forty years of life out of his house. Within two weeks, he was onto his new stage of life, and the house sat empty while life continued to swirl around me here across the street. I would pass by my kitchen window and miss seeing the old man as the mail arrived each day.
After three months, the "For Sale" sign came down, and our former neighbor returned. He couldn't cover the cost of both a house that didn't sell and the retirement home. So, he returned and was here to stay.
I brought him dinner. I left the kids in the house for too long with someone who wasn't fully prepared, I crossed our street and I rang his doorbell. Stepping into his home, I entered hallways of memories of a long life. About to turn ninety, he was hanging once more the pictures of loved ones who were no longer with him.
No wife. No visiting children. Just a kind old man with time on his hands enough to watch for the mailman.
I stayed for a while--too long, not wanting to think of what our kids were doing to the poor respite worker across the street in our own home. I knew whatever was happening, it was going to be chaotic. And, perhaps chaotic was not so bad.
I had been spending a good bit of time mentally wishing away the present, hoping for the days when life would quiet down for us. Now I was thinking that, perhaps there was such a thing as a life that was too quiet.
An hour later, we ended our visit, and I made my way across the street, hoping the old man could stretch dinner into a couple lunches as well. Leftovers are always a good thing.
So, too, I decided, was living in the moment.
This entry was written in response to the letter prompt "Q" in the Blogging A to Z Challenge 2012.
**************************
Visit MorgueFile for all your photographic blogging needs--free of charge and free for public use.
Wednesday, April 18, 2012
"Popping"
A couple of years ago, one of the local agencies that is involved with our older son needed an independent psychological evaluation on him. Don't ask. It's just something that, from time to time, all of us living this life need to do. So, I took him.
I had never been to the agency that was chosen for us. The waiting room was small. There were no toys. Nothing in that room indicated that this agency was accustomed to dealing with the special pediatric population.
Our son was as good as he could be, but nothing there held his attention, and, soon, he wanted to leave. The problem was that we couldn't leave. So I spent a good fifteen minutes working up a sweat trying to keep him from bolting out the exits.
"Please don't run for the door," I said to him. "We simply can't leave."
Scolded for his running, he next tried to sit, but his energy would get the best of him. Soon, he'd start to squirm, becoming physically uncomfortable in his skin. Next, he would pace. Back and forth. Back and forth. He'd crack his knuckles. Pull at his fingers.
Then came that thing that I hated. He could pull his scapula out of joint. He's yank it and make this terrible popping sound that would make me cringe every time. He loved that. He loved that it got under my skin.
"Stop popping," I told him.
"Popping!" he'd say with a grin. It was maddening.
After an eternity, I heard his name called by a rather stiff, middle-aged man. I stood to greet him, but he had already turned around and started walking down the hall.
Huh. I guess we were to follow him.
At least we would finally be in a clinical room where he would have toys and space to play while he was tested. I put my arm around our son's shoulder and dutifully followed the ani-social, nameless man down the hall. Yes, the worst was over.
Around the corner we went and into a room that wasn't a child-friendly examining room at all but, rather, a very adult office. It was an office with a desk full of papers(that I envisioned being knocked to the floor any moment). There were two upright chairs and a small loveseat on the far wall. Did this man expect our son to sit there like a little adult?
"I'M GOING TO GIVE YOU A TEST," he began.
Oh my gosh, was this man actually yelling at our son? He's not hard of hearing. And, what was this person's name, anyway? He hadn't even introduced himself.
I was feeling offended.
"CAN YOU DO THIS?" Mr. Nameless asked as he stacked a few colored blocks. Our son looked at the blocks on the desk. Child's play. Yes, he could do it. No, he didn't choose to do it. He turned his back and started pacing.
"He can't do it," the man said.
Yes he can, I thought. And, while not engaging could be part of his autism, I'm also not sure so sure I'd want to engage with you if I were him, either.
"For the record," I chimed in casually, "he can understand everything that we say to him, so..."
The man stared at me. If I were to read his mind-- which I told myself that I shouldn't do --it said that it didn't matter if our son heard, that our words would not compute, anyway.
"LET'S READ THIS SENTENCE," he next yelled to our son. This felt relentless. C'mon, mister, couldn't you work with me, here? I just stared at him in disbelief, shaken back to the moment by the shifting of our son in the seat next to me.
"Popping," he said as he looked up at me with a grin. I couldn't help myself. I snorted.
"What?" Mr. Nameless asked. "What did he say?"
"It's just something that he does," I offered.
"Oh," he said knowingly. "That's a behavior, you know."
"I'm sorry?" I quizzed.
"To say things in a conversation that are completely out of context. It shows social unawareness," he explained.
Oh, poor soul, I thought. I believe it is you who is misreading the context.
For, in that moment, and in his deliciously humorous way, our son was saying that this guy could go jump in a lake.
"Popping! Popping!" our son continued.
I got the giggles. I couldn't help it. And, so did he. Very clearly, we were two nuts sitting across the table from an examiner who had all but written his report. He could save the effort. I had a feeling we weren't going to use that report, anyway.
This entry was written in response to the letter prompt "P" in the Blogging A to Z Challenge 2012.
I had never been to the agency that was chosen for us. The waiting room was small. There were no toys. Nothing in that room indicated that this agency was accustomed to dealing with the special pediatric population.
Our son was as good as he could be, but nothing there held his attention, and, soon, he wanted to leave. The problem was that we couldn't leave. So I spent a good fifteen minutes working up a sweat trying to keep him from bolting out the exits.
"Please don't run for the door," I said to him. "We simply can't leave."
Scolded for his running, he next tried to sit, but his energy would get the best of him. Soon, he'd start to squirm, becoming physically uncomfortable in his skin. Next, he would pace. Back and forth. Back and forth. He'd crack his knuckles. Pull at his fingers.
Then came that thing that I hated. He could pull his scapula out of joint. He's yank it and make this terrible popping sound that would make me cringe every time. He loved that. He loved that it got under my skin.
"Stop popping," I told him.
"Popping!" he'd say with a grin. It was maddening.
After an eternity, I heard his name called by a rather stiff, middle-aged man. I stood to greet him, but he had already turned around and started walking down the hall.
Huh. I guess we were to follow him.
At least we would finally be in a clinical room where he would have toys and space to play while he was tested. I put my arm around our son's shoulder and dutifully followed the ani-social, nameless man down the hall. Yes, the worst was over.
Around the corner we went and into a room that wasn't a child-friendly examining room at all but, rather, a very adult office. It was an office with a desk full of papers(that I envisioned being knocked to the floor any moment). There were two upright chairs and a small loveseat on the far wall. Did this man expect our son to sit there like a little adult?
"I'M GOING TO GIVE YOU A TEST," he began.
Oh my gosh, was this man actually yelling at our son? He's not hard of hearing. And, what was this person's name, anyway? He hadn't even introduced himself.
I was feeling offended.
"CAN YOU DO THIS?" Mr. Nameless asked as he stacked a few colored blocks. Our son looked at the blocks on the desk. Child's play. Yes, he could do it. No, he didn't choose to do it. He turned his back and started pacing.
"He can't do it," the man said.
Yes he can, I thought. And, while not engaging could be part of his autism, I'm also not sure so sure I'd want to engage with you if I were him, either.
"For the record," I chimed in casually, "he can understand everything that we say to him, so..."
The man stared at me. If I were to read his mind-- which I told myself that I shouldn't do --it said that it didn't matter if our son heard, that our words would not compute, anyway.
"LET'S READ THIS SENTENCE," he next yelled to our son. This felt relentless. C'mon, mister, couldn't you work with me, here? I just stared at him in disbelief, shaken back to the moment by the shifting of our son in the seat next to me.
"Popping," he said as he looked up at me with a grin. I couldn't help myself. I snorted.
"What?" Mr. Nameless asked. "What did he say?"
"It's just something that he does," I offered.
"Oh," he said knowingly. "That's a behavior, you know."
"I'm sorry?" I quizzed.
"To say things in a conversation that are completely out of context. It shows social unawareness," he explained.
Oh, poor soul, I thought. I believe it is you who is misreading the context.
For, in that moment, and in his deliciously humorous way, our son was saying that this guy could go jump in a lake.
"Popping! Popping!" our son continued.
I got the giggles. I couldn't help it. And, so did he. Very clearly, we were two nuts sitting across the table from an examiner who had all but written his report. He could save the effort. I had a feeling we weren't going to use that report, anyway.
This entry was written in response to the letter prompt "P" in the Blogging A to Z Challenge 2012.
Tuesday, April 17, 2012
"Ouch"
One day, when our older son was seven, he approached me in the kitchen after school.
"Ouch," he said.
"Where do you ouch?" I asked, knowing full well that he would not be able to respond to my "where" question. He was still working on the five w's (who, what, where, when and why). "Uh-oh!" I said. "You ouch!"
"Ooouuuuch," he continued.
I started to investigate. Pointing to his stomach, the usual culprit. "Ouch?" I asked.
"All done," he said. No. Not his stomach.
I kept looking.
His face was fine. Feet, knees and legs were fine. I took his right arm in my hands and pulled back the sleeve. My heart sank. On his forearm in bright red was the imprint of his teeth. Further up his arm were bruises. There was a bruise on his shoulder.
I felt sick to my stomach.
Our son had not up until then been an aggressive child. At that point, any type of "behaviors" that school was trying to address were aimed more toward walking and attending--sitting for any length of time and being able to walk in the hall without breaking out into a sprint to a different direction.
How did he get the bite mark?
For him to bite himself, there was an issue. For there to be bruises on his arm, there was an issue. I ran to his communication log, his collection of daily notes which ran back and forth between home and school. No mention of what might have brought about these injuries.
"Oh, buddy!" I said to him. "I see! I see your ouch! But, I'm sorry I don't know what caused it. Mama will find out. I'm so sorry!" I felt helpless. Our son was trying to tell me about something that happened in his day, yet he didn't have the language. I can only imagine how awful that might have felt.
"Ouch," he said.
I pressed for communication over the next day and learned that he was no longer responding to the methods used by the teacher. In an effort to avoid work, he was throwing himself onto the floor, kicking at walls and at aides in his path. His size was an advantage, and they were growing weary of him.
It was his second year in that classroom. The first had been outstanding. The trick was to keep the momentum (or something close to it) as he grew and changed.
These "behaviors", I was told, must be shaped. They were not acceptable. I was unsure. If these were "behaviors", why did I not see them anywhere else? I viewed his actions to be communication. After all, he couldn't voice his opinion. Couldn't the program be changed to better suit his needs? No, I was told. They had changed all they could. He was the problem.
How is any child a problem?
"Ouch," he said to me again one day not long after the first incident. I looked at his leg. It was bruised. I grabbed my camera and began to document all of the marks.
I wanted to cry, but I didn't want him to see. I wanted to scream, but I didn't want to scare him. I was held hostage by the circumstances.
Nothing of usual course happens very quickly within the school district. Our son is nonverbal. His teacher was a good teacher. And, yet, he was coming home with bruises. This was not normal. New to school "behaviors", we had to work through the proper channels.
"Ouch," he said to me another day. More bruises on his wrist. What was going on?
I checked the communication log, and my world changed. That was the day I learned that, in his school less than one minute from our home, our seven-year-old had been pinned to the ground in a hold by five adults for more than 45 minutes.
Why didn't they just call me?
In the gym and unable to process the noise, he had thrown himself to the ground in rebellion. They were unsure how to move him. There were children on the other half of the room, and the adults feared that our son could be a safety risk. In our state, if there is a question of safety, unless otherwise specified in the child's paperwork, he can be placed into a hold.
That day was a loss of innocence for our son and his parents both.
"Ouch!" he had said to me and this time brought my own finger to point to the marks on his wrist.
Hell hath no fury like the mother of a nonverbal child who comes home hurt from school. No one. I no longer entirely trusted a soul with the care of our child.
For the record, please know that my husband and I respect educators. Indeed, we need educators because we cannot further our children in life on our own. At the same time, we also recognize that sometimes, for whatever reason, the method of teaching stops working, or the chemistry is no longer good--or maybe in some cases the chemistry never was good.
Courage is listening to the child.
"Ouch" was the simple yet heart-wrenching word from our son that forever changed the game in what documents travel with him as he moves through the educational system in our area.
To all of my fellow special needs parents, I encourage you to educate yourselves on your local guidelines regarding the use of restraint and seclusion with the ones you love.
This entry was written in response to the letter prompt "O" in the Blogging A to Z April 2012.
"Ouch," he said.
"Where do you ouch?" I asked, knowing full well that he would not be able to respond to my "where" question. He was still working on the five w's (who, what, where, when and why). "Uh-oh!" I said. "You ouch!"
"Ooouuuuch," he continued.
I started to investigate. Pointing to his stomach, the usual culprit. "Ouch?" I asked.
"All done," he said. No. Not his stomach.
I kept looking.
His face was fine. Feet, knees and legs were fine. I took his right arm in my hands and pulled back the sleeve. My heart sank. On his forearm in bright red was the imprint of his teeth. Further up his arm were bruises. There was a bruise on his shoulder.
I felt sick to my stomach.
Our son had not up until then been an aggressive child. At that point, any type of "behaviors" that school was trying to address were aimed more toward walking and attending--sitting for any length of time and being able to walk in the hall without breaking out into a sprint to a different direction.
How did he get the bite mark?
For him to bite himself, there was an issue. For there to be bruises on his arm, there was an issue. I ran to his communication log, his collection of daily notes which ran back and forth between home and school. No mention of what might have brought about these injuries.
"Oh, buddy!" I said to him. "I see! I see your ouch! But, I'm sorry I don't know what caused it. Mama will find out. I'm so sorry!" I felt helpless. Our son was trying to tell me about something that happened in his day, yet he didn't have the language. I can only imagine how awful that might have felt.
"Ouch," he said.
I pressed for communication over the next day and learned that he was no longer responding to the methods used by the teacher. In an effort to avoid work, he was throwing himself onto the floor, kicking at walls and at aides in his path. His size was an advantage, and they were growing weary of him.
It was his second year in that classroom. The first had been outstanding. The trick was to keep the momentum (or something close to it) as he grew and changed.
These "behaviors", I was told, must be shaped. They were not acceptable. I was unsure. If these were "behaviors", why did I not see them anywhere else? I viewed his actions to be communication. After all, he couldn't voice his opinion. Couldn't the program be changed to better suit his needs? No, I was told. They had changed all they could. He was the problem.
How is any child a problem?
"Ouch," he said to me again one day not long after the first incident. I looked at his leg. It was bruised. I grabbed my camera and began to document all of the marks.
I wanted to cry, but I didn't want him to see. I wanted to scream, but I didn't want to scare him. I was held hostage by the circumstances.
Nothing of usual course happens very quickly within the school district. Our son is nonverbal. His teacher was a good teacher. And, yet, he was coming home with bruises. This was not normal. New to school "behaviors", we had to work through the proper channels.
"Ouch," he said to me another day. More bruises on his wrist. What was going on?
I checked the communication log, and my world changed. That was the day I learned that, in his school less than one minute from our home, our seven-year-old had been pinned to the ground in a hold by five adults for more than 45 minutes.
Why didn't they just call me?
In the gym and unable to process the noise, he had thrown himself to the ground in rebellion. They were unsure how to move him. There were children on the other half of the room, and the adults feared that our son could be a safety risk. In our state, if there is a question of safety, unless otherwise specified in the child's paperwork, he can be placed into a hold.
That day was a loss of innocence for our son and his parents both.
"Ouch!" he had said to me and this time brought my own finger to point to the marks on his wrist.
Hell hath no fury like the mother of a nonverbal child who comes home hurt from school. No one. I no longer entirely trusted a soul with the care of our child.
For the record, please know that my husband and I respect educators. Indeed, we need educators because we cannot further our children in life on our own. At the same time, we also recognize that sometimes, for whatever reason, the method of teaching stops working, or the chemistry is no longer good--or maybe in some cases the chemistry never was good.
Courage is listening to the child.
"Ouch" was the simple yet heart-wrenching word from our son that forever changed the game in what documents travel with him as he moves through the educational system in our area.
To all of my fellow special needs parents, I encourage you to educate yourselves on your local guidelines regarding the use of restraint and seclusion with the ones you love.
This entry was written in response to the letter prompt "O" in the Blogging A to Z April 2012.
Monday, April 16, 2012
Neurology
Tell me, as a parent, if you had to choose for your child to have a physical disability or a developmental disability, which would you choose?
Neither, I know. But, what if?
Our younger son's left arm was paralyzed at birth.
He had suffered an injury in the birthing process that I learned about less than a minute before they laid him on my chest. The nerves in his neck and arm had been severely stretched and some severed. I held him close, protecting his limp arm, and he looked right at me.
At home, his older brother, not yet two years old, had yet to look directly at me. Already diagnosed with a couple disorders questioning his neurological development, big brother was physically able.
Physically or developmentally impaired neurology. Which would you choose?
I didn't have to choose. Now a mother to two sons, I was immediately faced with how fragile neurology could be. These were the cards our family was dealt, and there would be more to come.
There I was in the hospital with my beautiful newborn, fully understanding that he was paralyzed. Yet, when I looked down at him--listless arm and all--why was I calm?
Why did the thought of a life with the developmental disabilities facing our older son scare the pants off of me? And yet, when looking at this new life with only one working arm, although I was worried, I was also still?
To this day, that has worked on me.
I don't care about our younger son any less. It's just that, well, to an extent, as his nerves healed oh-so-slowly, his muscles and bones could be mushed, coerced, and, ultimately, surgically corrected. It took energy. It took education. It took manpower, money and advocacy. But it was possible. Our whole family believed it and fought for a life free of physical disability for that child.
But, autism. Autism was then and still is chronic. And, while it, too, can be bent and shaped, unlike our younger son with his corrective surgery, we couldn't just extract our older son's autism.
Just in case you are wondering, yes, yes I really did want to extract it. I did. I wanted him to talk. I wanted him to live life without crippling anxiety. I wanted him to be able to see the world as beautiful and not offensive.
There are some traits about our older son that were born of autism and are a thing of beauty. However, in his young life, it had brought about a great deal of pain. I feared that pain. I feared for his future. And, years later, when we received a second diagnosis for our younger son, I feared for us all.
Sometimes, I still do.
Remember that list of Things I Didn't Expect I Would Be Doing As A Parent? (or something to that effect) Sure you do! You read ALL my posts, right? Let's add to the list: Obsessing about our sons' neurology. I don't know if this one is necessarily a good thing or a bad thing.
It just is.
You can read more about brachial plexus injuries HERE or more about our younger son and his journey in this early Mom Cave post HERE.
****************
This entry was written in response to the letter prompt "N" in Blogging A to Z April 2012.
Neither, I know. But, what if?
Our younger son's left arm was paralyzed at birth.
He had suffered an injury in the birthing process that I learned about less than a minute before they laid him on my chest. The nerves in his neck and arm had been severely stretched and some severed. I held him close, protecting his limp arm, and he looked right at me.
At home, his older brother, not yet two years old, had yet to look directly at me. Already diagnosed with a couple disorders questioning his neurological development, big brother was physically able.
Physically or developmentally impaired neurology. Which would you choose?
I didn't have to choose. Now a mother to two sons, I was immediately faced with how fragile neurology could be. These were the cards our family was dealt, and there would be more to come.
There I was in the hospital with my beautiful newborn, fully understanding that he was paralyzed. Yet, when I looked down at him--listless arm and all--why was I calm?
Why did the thought of a life with the developmental disabilities facing our older son scare the pants off of me? And yet, when looking at this new life with only one working arm, although I was worried, I was also still?
To this day, that has worked on me.
I don't care about our younger son any less. It's just that, well, to an extent, as his nerves healed oh-so-slowly, his muscles and bones could be mushed, coerced, and, ultimately, surgically corrected. It took energy. It took education. It took manpower, money and advocacy. But it was possible. Our whole family believed it and fought for a life free of physical disability for that child.
But, autism. Autism was then and still is chronic. And, while it, too, can be bent and shaped, unlike our younger son with his corrective surgery, we couldn't just extract our older son's autism.
Just in case you are wondering, yes, yes I really did want to extract it. I did. I wanted him to talk. I wanted him to live life without crippling anxiety. I wanted him to be able to see the world as beautiful and not offensive.
There are some traits about our older son that were born of autism and are a thing of beauty. However, in his young life, it had brought about a great deal of pain. I feared that pain. I feared for his future. And, years later, when we received a second diagnosis for our younger son, I feared for us all.
Sometimes, I still do.
Remember that list of Things I Didn't Expect I Would Be Doing As A Parent? (or something to that effect) Sure you do! You read ALL my posts, right? Let's add to the list: Obsessing about our sons' neurology. I don't know if this one is necessarily a good thing or a bad thing.
It just is.
You can read more about brachial plexus injuries HERE or more about our younger son and his journey in this early Mom Cave post HERE.
****************
This entry was written in response to the letter prompt "N" in Blogging A to Z April 2012.
Saturday, April 14, 2012
Music
One of our older son's first Christmas gifts was given to him the year he wasn't quite six months old. It was a Fisher Price light and sound piano that he had seen another child open at a playgroup Christmas party a few weeks earlier.
When he saw the other child open that piano, he threw his entire body in every direction possible to get to that piano.
At a time when very little seemed to make him happy, I was determined to get that piano for him for his first Christmas. Only, that piano must have been in high demand. It was sold out everywhere we looked.
My husband and I became obsessed with finding that piano. Ok, well, perhaps I was more obsessed, but that quality in me payed off, because we did eventually find that piano in the small town in West Virginia where I grew up and where we had brought our son to celebrate the holiday. He loved that piano.
He played with it every day. He would bang away at the keys, drink in the lights and delight in the sounds. It made him happy--or at least, it made him less unhappy than he spent most of the other time back in those days. I was happy he had something.
The following holiday season, my husband and I were driving with our son in the car. A year older, he still loved that piano, and he carried it with him most of the places he went. He sat there in the back seat of our van, the tiny piano on his lap, pecking away at the piano's six colorful keys.
My husband and I were strung out and exhausted, and the van offered a safe reprieve for us. Our child was safe, and we could zone. In fact, I was zoning that particular day when I first heard it, a little clumsy at first and then more sure as our son practiced.
At eighteen months old, that child was pecking out the first eight notes to Beethoven's Fifth Symphony.
"Dum, dum, dum, duuum!" I heard. "Dum, dum, dum, DUUUUUMMMM!"
Shocked, I sat up in my seat and looked at my husband only to see the same look of shock coming back to me from his face. He had heard it also. Why, our child was a genius! Oh, sure, lots of people say that; but in our case it was absolutely true! ;)
In the years to come, we would learn of our son's exceptional ability to learn and produce music, a quality not unusual for many children with autism. As he grew, his babbles came in the form of song, such as Bach's Toccata and Fugue in D minor.
It was not unusual for us to pass away our time at a local Target while singing Mozart's Sonata in C major. Music had infused every area of our lives. (Thank you to the "Baby Einstein" video series for laying a foundation for the classics with our son.)
This child lived his life through a filter of music.
It was in music therapy during the those years that he voiced words with any sort of purpose or regularity. Yet, I was told that language within music was processed on a different side of the brain than speaking language. If this child sings, I was told, don't automatically expect him to talk.
Perhaps that has proven to be true; however, what music and music therapy did provide for him was a reason to connect, something to draw him out of his world, something to share.
And, while music may not have produced spoken language with our son, it did lead to an effective mode of communication; for, when he was looking for a particular toy, he would sing music particular to that toy. And, when he was looking for a certain VHS, he'd sing a distinguishing song from that video.
By the way, he also conveniently learned to sing songs in order to tune out people around him, school work and the world in general. It's an avenue of escape and solace. He did that to me just the other day.
"Don't you think that a little Mozart is going to scare me away, young man!" I informed him in frustration. "I know that you can hear me, so I'm going to just keep on talking!"
I "har-umphed" indignantly but then thought about the ridiculousness of what I had just said. Truly, this child has opened my world to a wealth of gifts that I don't know if the typical life of my dreams would have ever provided.
Our house is busy. Our kids are happy, and our halls are ever-filled with the sound of beautiful music.
**************************
Want to know a thing or two about links and visit a really great blog in the process? Check out The Word Nerd. She's so word-a-licious that you'll be glad that you did!
***************************
This entry was written in response to the letter prompt "M" in the Blogging A to Z April 2012.
When he saw the other child open that piano, he threw his entire body in every direction possible to get to that piano.
At a time when very little seemed to make him happy, I was determined to get that piano for him for his first Christmas. Only, that piano must have been in high demand. It was sold out everywhere we looked.
My husband and I became obsessed with finding that piano. Ok, well, perhaps I was more obsessed, but that quality in me payed off, because we did eventually find that piano in the small town in West Virginia where I grew up and where we had brought our son to celebrate the holiday. He loved that piano.
He played with it every day. He would bang away at the keys, drink in the lights and delight in the sounds. It made him happy--or at least, it made him less unhappy than he spent most of the other time back in those days. I was happy he had something.
The following holiday season, my husband and I were driving with our son in the car. A year older, he still loved that piano, and he carried it with him most of the places he went. He sat there in the back seat of our van, the tiny piano on his lap, pecking away at the piano's six colorful keys.
My husband and I were strung out and exhausted, and the van offered a safe reprieve for us. Our child was safe, and we could zone. In fact, I was zoning that particular day when I first heard it, a little clumsy at first and then more sure as our son practiced.
At eighteen months old, that child was pecking out the first eight notes to Beethoven's Fifth Symphony.
"Dum, dum, dum, duuum!" I heard. "Dum, dum, dum, DUUUUUMMMM!"
Shocked, I sat up in my seat and looked at my husband only to see the same look of shock coming back to me from his face. He had heard it also. Why, our child was a genius! Oh, sure, lots of people say that; but in our case it was absolutely true! ;)
In the years to come, we would learn of our son's exceptional ability to learn and produce music, a quality not unusual for many children with autism. As he grew, his babbles came in the form of song, such as Bach's Toccata and Fugue in D minor.
It was not unusual for us to pass away our time at a local Target while singing Mozart's Sonata in C major. Music had infused every area of our lives. (Thank you to the "Baby Einstein" video series for laying a foundation for the classics with our son.)
This child lived his life through a filter of music.
It was in music therapy during the those years that he voiced words with any sort of purpose or regularity. Yet, I was told that language within music was processed on a different side of the brain than speaking language. If this child sings, I was told, don't automatically expect him to talk.
Perhaps that has proven to be true; however, what music and music therapy did provide for him was a reason to connect, something to draw him out of his world, something to share.
And, while music may not have produced spoken language with our son, it did lead to an effective mode of communication; for, when he was looking for a particular toy, he would sing music particular to that toy. And, when he was looking for a certain VHS, he'd sing a distinguishing song from that video.
By the way, he also conveniently learned to sing songs in order to tune out people around him, school work and the world in general. It's an avenue of escape and solace. He did that to me just the other day.
"Don't you think that a little Mozart is going to scare me away, young man!" I informed him in frustration. "I know that you can hear me, so I'm going to just keep on talking!"
I "har-umphed" indignantly but then thought about the ridiculousness of what I had just said. Truly, this child has opened my world to a wealth of gifts that I don't know if the typical life of my dreams would have ever provided.
Our house is busy. Our kids are happy, and our halls are ever-filled with the sound of beautiful music.
**************************
Want to know a thing or two about links and visit a really great blog in the process? Check out The Word Nerd. She's so word-a-licious that you'll be glad that you did!
***************************
This entry was written in response to the letter prompt "M" in the Blogging A to Z April 2012.
Friday, April 13, 2012
Losing my Cookies
In this very moment, I am about to lose my cookies from the top deck of the fastest carousel in town. I know. It's a carousel. How bad can it be, right?
Trust me, this one is too fast.
Kids love it. Any person beyond 35 will have some issues with it. It needs to come with some sort of warning.
It's Spring "Break" here in New York, and I'm sweating it out with the kids, kids who are lacking in sensory integration therapy. Sleep disturbances, pacing, crashing into furniture, irritability, moodiness, instability, mouthing objects, toilet regression...ahhh, good times.
Enter, our good friend The Carousel.
Our older son adores the light and sound sensations that come along with the carousels in our local area (four in our vicinity and one more an hour away). However, one important tool those carousels provide for him and for us is sensory input.
The circular motion of a carousel offers vestibular input, helping a child with sensory integration issues to calm and organize himself, to feel where his body is in space. Yes, all that really can come from a carousel.
That's why we do it. We take him daily. And, during breaks, we take him to as many as we can.
'Round and 'round and 'round it turns.
You know, you can feel the spinning more intensely from the top deck.
'Round and 'round and 'round it turns.
I will not move my eyes from the keyboard on my phone.
'Round and 'round and 'round it turns.
Focus. If I look away, I will surely lose my breakfast. I think to the handful of carouses in the area and the fact that it is still morning. I'm toast.
Round and round and round it turns.
Now on the bottom deck, I take it back. The spinning feels just as bad here. My goose has been cooked on this evil kiddie ride.
'Round and 'round and 'round it turns.
Phone closed. Chin to chest. Eyes focused downward. We have at least three more rides to go on this one.
'Round and 'round and 'round it turns.
Next time, I'm taking some dramamine.
This entry was made in response to the letter prompt "L" in the Blogging A to Z Challenge April 2012
********************************
Visit Morgue File for your photo blogging needs--free of charge and free for public use.
Trust me, this one is too fast.
Kids love it. Any person beyond 35 will have some issues with it. It needs to come with some sort of warning.
It's Spring "Break" here in New York, and I'm sweating it out with the kids, kids who are lacking in sensory integration therapy. Sleep disturbances, pacing, crashing into furniture, irritability, moodiness, instability, mouthing objects, toilet regression...ahhh, good times.
Enter, our good friend The Carousel.
Our older son adores the light and sound sensations that come along with the carousels in our local area (four in our vicinity and one more an hour away). However, one important tool those carousels provide for him and for us is sensory input.
The circular motion of a carousel offers vestibular input, helping a child with sensory integration issues to calm and organize himself, to feel where his body is in space. Yes, all that really can come from a carousel.
That's why we do it. We take him daily. And, during breaks, we take him to as many as we can.
'Round and 'round and 'round it turns.
You know, you can feel the spinning more intensely from the top deck.
'Round and 'round and 'round it turns.
I will not move my eyes from the keyboard on my phone.
'Round and 'round and 'round it turns.
Focus. If I look away, I will surely lose my breakfast. I think to the handful of carouses in the area and the fact that it is still morning. I'm toast.
Round and round and round it turns.
Now on the bottom deck, I take it back. The spinning feels just as bad here. My goose has been cooked on this evil kiddie ride.
'Round and 'round and 'round it turns.
Phone closed. Chin to chest. Eyes focused downward. We have at least three more rides to go on this one.
'Round and 'round and 'round it turns.
Next time, I'm taking some dramamine.
This entry was made in response to the letter prompt "L" in the Blogging A to Z Challenge April 2012
********************************
Visit Morgue File for your photo blogging needs--free of charge and free for public use.
Wednesday, April 11, 2012
"Kip"
Four hours.
That's how long our older son was awake in the middle of the night last night. I wish I could say that this was unusual behavior; but, the truth is that his sleep patterns range from "not bad" to "just plain rotten" without any sort of sense. How lucky for all of us! We're in the middle of a rotten spell!
Lately, he's been on a kick, remembering a song that I have sung to him since his infancy. I can't take credit for that song. Heck, I can't even find it in an on-line search anymore so that I can properly reference it.
It's a song about a security blanket, worn with love, and its owner's loyalty to it. Both of our kids have security blankets, as did my husband and I. There's nothing like the bond of a child and his blankie.
"Fluffy," our son called out to me around midnight last night.
That was his signal to me that he wanted me to sing the song. For the record, the word "fluffy" is not to be found within this song's lyrics. Rather, "fluffy" was his closest approximation to the word that started the first verse.
Out of bed I crawled. I sang to him. I kissed him gently as I tucked him in, and I said, "I love you. Now, go to sleep."
Fifteen minutes passed.
"Fluffy," he called out to me.
With a sigh, I returned to his room and again sang the familiar song. Kiss and tuck in.
"I love you," I said, and I went back to my own bed.
Thirty minutes later, I heard, "Fluffy!" from our son.
Argh!
Quick song. Kiss. Tuck. Out the door. This stinks.
Ten minutes passed.
"Fluffy," he called to me.
"SING IT YOURSELF!" I yelled to him. I was over it.
And, he did--in his own words that only his family would understand and with perfect pitch, he sang the song. My heart melted. I climbed from my bed and walked to his room. When I reached the doorway, there he was, sitting up in his bed with a giant grin on his face.
"Kip!' he said to me.
I smiled. "You want a kiss?" I asked.
"Kip!" he responded.
It was half past an obnoxious hour in the middle of the night, but for a moment, I didn't care. I walked to our son's bed knowing that there was no place that I would rather be.
This entry was written in response to the letter prompt "K" in the Blogging A to Z Challenge 2012.
"J" Post 1: Just Post It!
I wrote my "J" post in the Blogging A to Z Challenge as we were approaching Easter. Anyone who knows me knows that holidays are my hurdle. They are the one thing that I've not been able to "blend" into life, to make lemonade out of lemons, to spend the day basking in the warm fuzzy glow of (albeit adapted)celebration. For what ever reasons, that hasn't happened yet for our family.
As for my feelings about that, well, I'm a work in progress.
"I need an idea for 'J'," I said to my husband as we were chasing after the kids one evening. The weekend was approaching, and we were trying to figure out what stores would be closed on Easter Sunday. Closed malls = anxiety ridden older son. We needed to plan.
"Joining," my husband said with a snort.
I think we both have work to do in that area.
The truth of the matter is, autism can be isolating. When it comes to holidays, our older son has a very, very difficult time. His needs simply can't at this time blend into celebrations that mean nothing to him. It's a matter of health and well-being.
For that reason, we often find ourselves not participating. My family is in another state, so I've given up celebrating with them. My husband might drop by his parents' home once the kids are in bed.
It is less than ideal. We look forward to growth, but we are also confident that we have made the right decision for our special family.
We are ok! LOL. But, you may not know it by reading the post below. It isn't all that happy. What it is...is real. So, I've decided to Just Post It!
Thanks. In case you question it, we're fine--particularly now that the holiday is over!
As for my feelings about that, well, I'm a work in progress.
"I need an idea for 'J'," I said to my husband as we were chasing after the kids one evening. The weekend was approaching, and we were trying to figure out what stores would be closed on Easter Sunday. Closed malls = anxiety ridden older son. We needed to plan.
"Joining," my husband said with a snort.
I think we both have work to do in that area.
The truth of the matter is, autism can be isolating. When it comes to holidays, our older son has a very, very difficult time. His needs simply can't at this time blend into celebrations that mean nothing to him. It's a matter of health and well-being.
For that reason, we often find ourselves not participating. My family is in another state, so I've given up celebrating with them. My husband might drop by his parents' home once the kids are in bed.
It is less than ideal. We look forward to growth, but we are also confident that we have made the right decision for our special family.
We are ok! LOL. But, you may not know it by reading the post below. It isn't all that happy. What it is...is real. So, I've decided to Just Post It!
Thanks. In case you question it, we're fine--particularly now that the holiday is over!
"J" post 2: Joining
Holidays.
People.
Lots of people.
Talking, touching people.
I'm sorry, we won't be joining you.
Noises.
Relentless, loud noises.
Screaming from all directions.
I'm sorry, we won't be joining you.
Smells.
Strong smells.
Smells that offend.
I'm sorry, we won't be joining you.
Food.
Food that hurts the system.
On every surface in nearly every room.
I'm sorry, we won't be joining you.
Forcing.
Crying.
Melting.
Sweating.
I'm sorry, we won't be joining you.
Redefining celebration.
Peaceful.
Albeit lonely.
Choosing health over holiday.
This is life with autism.
This entry was written in response to the letter prompt "J" in the Blogging A to Z Challenge April 2012.
***************************
Visit Morgue File for your blogging photo needs--free of charge and free for public use.
People.
Lots of people.
Talking, touching people.
I'm sorry, we won't be joining you.
Noises.
Relentless, loud noises.
Screaming from all directions.
I'm sorry, we won't be joining you.
Smells.
Strong smells.
Smells that offend.
I'm sorry, we won't be joining you.
Food.
Food that hurts the system.
On every surface in nearly every room.
I'm sorry, we won't be joining you.
Forcing.
Crying.
Melting.
Sweating.
I'm sorry, we won't be joining you.
Redefining celebration.
Peaceful.
Albeit lonely.
Choosing health over holiday.
This is life with autism.
This entry was written in response to the letter prompt "J" in the Blogging A to Z Challenge April 2012.
***************************
Visit Morgue File for your blogging photo needs--free of charge and free for public use.
Tuesday, April 10, 2012
Imitate
"Have a great Spring Break!" wished our older son's afternoon bus driver this Thursday when they brought him home from school. You could have knocked me over with a feather.
Spring Break??!!! NOW??! But, what about tomorrow? There's still another day in the week!
Ugh. The Friday before Easter Sunday is Good Friday. No school. Yes, yes I guess I knew that, but my gracious, I did not want to think that one through. The week following Easter with the kids home is not something I want to consider, even though it is here. It is upon me as I type.
I was standing in shock from that news, trying to find my breath but still look cool and collected (I don't know why I bother) as the bus aides waved to our son. That's when it happened.
He waved back to them. It was awkward and unsure, but it was definitely a wave, and while I might have seen him try it once or twice before, this was the first time I took note. He was actually imitating them.
Natural imitation has been a long time coming in this house. Our walls and halls echo from the days of Early Intervention when therapists tackled this issue.
"Do this!" I heard often in their cheerful, sing-song manner.
Our son usually sat at a small table that my parents purchased for him from The Pottery Barn. It was toddler sized and perfect for all sorts of fun toddler-like activities--except in our home, it was our ABA table.
Applied Behavioral Analysis (ABA) is one type of intervention used for some children on the autistic spectrum to teach basic skill. ABA taught our son to answer to his name.
Sitting at this "happy" little table during his ABA sessions, he would be given a toy to play with briefly. Then, that toy would be taken from him, kept in sight as incentive, while the therapist issued the desired command. Once the child performed the command, the toy was returned.
Tough love, I would tell myself. You must be strong for his future.
Due to the severity of our son's autism, he needed this. Yet, I would not be honest if I said, as his mother, I was perfectly fine with it.
"Do this!" I would hear, as I busied myself nearby, always out of range but keeping our son in my peripheral vision. Ugh. Sometimes I would cry. I cried a lot in those early days.
In time, as he progressed, the verbal prompt of "Do this" was removed, and the therapists would take away the reinforcer, do something and then wait for him to repeat. That was a tough one, and a skill he was still trying to master and then generalize to every day life when he aged out of Early Intervention and moved into school.
Waving was not a skill our son had learned to generalize from the ABA setting into every day life. Social greetings and gestures were a stumbling block. And, with the lack of home support once Early Intervention left, well, we had bigger fish to fry than teaching our son to wave.
I'm not sure how the wave happened this past Thursday (or the other couple times before). I simply breathed in the moment, smiled deeply and walked him from the bus on into the house. Upon entering, I could hear the echos of yesterday as they celebrated the seeds planted so long ago.
"Do this!"
This entry was written in response to the letter prompt "I" in the Blogging A to Z Challenge April 2012.
Spring Break??!!! NOW??! But, what about tomorrow? There's still another day in the week!
Ugh. The Friday before Easter Sunday is Good Friday. No school. Yes, yes I guess I knew that, but my gracious, I did not want to think that one through. The week following Easter with the kids home is not something I want to consider, even though it is here. It is upon me as I type.
I was standing in shock from that news, trying to find my breath but still look cool and collected (I don't know why I bother) as the bus aides waved to our son. That's when it happened.
He waved back to them. It was awkward and unsure, but it was definitely a wave, and while I might have seen him try it once or twice before, this was the first time I took note. He was actually imitating them.
Natural imitation has been a long time coming in this house. Our walls and halls echo from the days of Early Intervention when therapists tackled this issue.
"Do this!" I heard often in their cheerful, sing-song manner.
Our son usually sat at a small table that my parents purchased for him from The Pottery Barn. It was toddler sized and perfect for all sorts of fun toddler-like activities--except in our home, it was our ABA table.
Applied Behavioral Analysis (ABA) is one type of intervention used for some children on the autistic spectrum to teach basic skill. ABA taught our son to answer to his name.
Sitting at this "happy" little table during his ABA sessions, he would be given a toy to play with briefly. Then, that toy would be taken from him, kept in sight as incentive, while the therapist issued the desired command. Once the child performed the command, the toy was returned.
Tough love, I would tell myself. You must be strong for his future.
Due to the severity of our son's autism, he needed this. Yet, I would not be honest if I said, as his mother, I was perfectly fine with it.
"Do this!" I would hear, as I busied myself nearby, always out of range but keeping our son in my peripheral vision. Ugh. Sometimes I would cry. I cried a lot in those early days.
In time, as he progressed, the verbal prompt of "Do this" was removed, and the therapists would take away the reinforcer, do something and then wait for him to repeat. That was a tough one, and a skill he was still trying to master and then generalize to every day life when he aged out of Early Intervention and moved into school.
Waving was not a skill our son had learned to generalize from the ABA setting into every day life. Social greetings and gestures were a stumbling block. And, with the lack of home support once Early Intervention left, well, we had bigger fish to fry than teaching our son to wave.
I'm not sure how the wave happened this past Thursday (or the other couple times before). I simply breathed in the moment, smiled deeply and walked him from the bus on into the house. Upon entering, I could hear the echos of yesterday as they celebrated the seeds planted so long ago.
"Do this!"
This entry was written in response to the letter prompt "I" in the Blogging A to Z Challenge April 2012.
Monday, April 9, 2012
Harness
Our older son refuses to plant his rear end on the seat of his bus.
"Do you have a problem on the bus?" His speech therapist asked him one day during their regular session. She is often our best person to figuring out what he is thinking. She would ask him a series of "yes" or "no" questions, holding up picture symbols for him to point to for his answer. As with their conversation regarding the bus, I find out what he is thinking by reading a transcript provided for me in his notebook at the end of the day.
"No," he answered by pointing to a picture symbol she held in her hand.
"Do other people have a problem with you and the bus?" She then asked him.
"Yes," he answered.
Why that little so-and-so!!
"Do you really think it is other people who have the problem?" She asked.
"Yes," he answered by pointing to a card.
"Is sitting that way all that important to you?" She asked.
"No," he said.
Gasp!
"Does it bother you that people are upset with you?" She pressed.
"No," he replied.
"Do you plan to change what you are doing?" She probed further.
"No," he answered.
I couldn't believe what I was reading. On one hand, the level of communication our son had with this woman was so delicious, and so NORMAL that I wanted to cry! Yet, his defiance was so maddening at the same time. I didn't know whether to scold him or hug him.
Either way, it was clear, he was getting his jollies by trying to lie on his belly on the seat of the bus. Seemingly, he enjoyed our stress level, and he didn't give a hoot about any token system put in place to curb the behavior.
It was HIS behavior, and he was owning it.
Silently, I was celebrating his spirit. Quietly, I was applauding his pre-teen expression. Typical behavior is a rarity around here.
However, I was careful to not share my delight with him.
"YOU GET ON THAT BUS AND SIT DOWN ON YOUR BUM, YOUNG MAN!" I strongly urged him every morning.
After much coaxing, he'd be in place. I'd back off the bus, hold my breath and say a quick prayer. Then, I'd turn around and head to the house, ready to make the first of several phone calls to fight for what rights my son does have to act like a jerk.
Some rights he doesn't have. And, here is where I am struggling.
The lines are blurry, and administrators don't want to draw them where parents want them to be drawn. Often, the battles are a question of who is willing to step up to the plate first or offer a concession in order to meet the needs of all involved.
Money. Ugh. My son always costs people money. They don't like that.
But, money, safety and dignity are all things with which we struggle in these battles. This morning, I feel as though I lost that battle as I watched our son being placed into a harness before the "happy" little school bus backed out of the driveway and drove away on its "happy" little route.
I didn't feel so happy.
I cried. I felt as though I'd sold our son's dignity for the opponent's unwillingness to properly staff that bus. Doing so would cost more money. So, why not restrain him, right? Putting him in a harness so that he can't move around freely eliminates the problem, right?
I felt as though I had failed our son.
And while, yes, children must learn consequences of their behavior, particularly blatant defiant behavior such as our son's disorderly conduct, our level of consequences--those in the special needs world--don't include those used in mainstream society.
Instead of grounding him or taking away his cell phone, we're talking about things such as restraint.
My heart is broken.
I can appreciate the use of restraints with different children under different circumstances. I stand in judgment of no parent other than myself for allowing my own child to ride away today.
I'm sorry, buddy. I promise I won't do that to you again.
This entry was written in response to the letter prompt "H" in the A to Z Challenge April 2012.
"Do you have a problem on the bus?" His speech therapist asked him one day during their regular session. She is often our best person to figuring out what he is thinking. She would ask him a series of "yes" or "no" questions, holding up picture symbols for him to point to for his answer. As with their conversation regarding the bus, I find out what he is thinking by reading a transcript provided for me in his notebook at the end of the day.
"No," he answered by pointing to a picture symbol she held in her hand.
"Do other people have a problem with you and the bus?" She then asked him.
"Yes," he answered.
Why that little so-and-so!!
"Do you really think it is other people who have the problem?" She asked.
"Yes," he answered by pointing to a card.
"Is sitting that way all that important to you?" She asked.
"No," he said.
Gasp!
"Does it bother you that people are upset with you?" She pressed.
"No," he replied.
"Do you plan to change what you are doing?" She probed further.
"No," he answered.
I couldn't believe what I was reading. On one hand, the level of communication our son had with this woman was so delicious, and so NORMAL that I wanted to cry! Yet, his defiance was so maddening at the same time. I didn't know whether to scold him or hug him.
Either way, it was clear, he was getting his jollies by trying to lie on his belly on the seat of the bus. Seemingly, he enjoyed our stress level, and he didn't give a hoot about any token system put in place to curb the behavior.
It was HIS behavior, and he was owning it.
Silently, I was celebrating his spirit. Quietly, I was applauding his pre-teen expression. Typical behavior is a rarity around here.
However, I was careful to not share my delight with him.
"YOU GET ON THAT BUS AND SIT DOWN ON YOUR BUM, YOUNG MAN!" I strongly urged him every morning.
After much coaxing, he'd be in place. I'd back off the bus, hold my breath and say a quick prayer. Then, I'd turn around and head to the house, ready to make the first of several phone calls to fight for what rights my son does have to act like a jerk.
Some rights he doesn't have. And, here is where I am struggling.
The lines are blurry, and administrators don't want to draw them where parents want them to be drawn. Often, the battles are a question of who is willing to step up to the plate first or offer a concession in order to meet the needs of all involved.
Money. Ugh. My son always costs people money. They don't like that.
But, money, safety and dignity are all things with which we struggle in these battles. This morning, I feel as though I lost that battle as I watched our son being placed into a harness before the "happy" little school bus backed out of the driveway and drove away on its "happy" little route.
I didn't feel so happy.
I cried. I felt as though I'd sold our son's dignity for the opponent's unwillingness to properly staff that bus. Doing so would cost more money. So, why not restrain him, right? Putting him in a harness so that he can't move around freely eliminates the problem, right?
I felt as though I had failed our son.
And while, yes, children must learn consequences of their behavior, particularly blatant defiant behavior such as our son's disorderly conduct, our level of consequences--those in the special needs world--don't include those used in mainstream society.
Instead of grounding him or taking away his cell phone, we're talking about things such as restraint.
My heart is broken.
I can appreciate the use of restraints with different children under different circumstances. I stand in judgment of no parent other than myself for allowing my own child to ride away today.
I'm sorry, buddy. I promise I won't do that to you again.
This entry was written in response to the letter prompt "H" in the A to Z Challenge April 2012.
Saturday, April 7, 2012
Green
"He has a 'thing' for the color green," my sister said to me on the eve of our older son's first birthday. A special educator with a keen eye, she had never been one to miss much.
"No he doesn't," I said defensively.
What was she trying to say, anyway? Was that a loaded statement? Was she saying that he had a thing for green and just liked it? Or, did she mean that he had a thing for it--in a developmentally disabled sort-of-way?
I was cautious of everyone in the pre-diagnosis days. Looks lingered a little too long. Words were spoken in hushed tones when people thought I couldn't hear. I tried to kill the conversation with my sister about the color green and just concentrate on our son's birthday. However, the topic did not go away.
"Your son has perseverations," I was told a year later by the man who, at the time, was trying to diagnose our son with autism. My eyes were stinging with tears, and my defenses were once again mounting.
"What are perseverations?" I asked.
"Extreme interests," he answered. "Liking something more intensely than others would." And then, that's when he said it. "For example, as in the way he enjoys the color green."
I hated that man.
"But, he's only two," I suggested. "Perhaps he just enjoyes the color." C'mon, people! Can't a kid just like something without it being wrong?
The psychologist shrugged, unconvinced, and let it drop.
Years later, I've come to grips with the meaning and presence of perseverations in our life. Anyone who had tried to tell me that our son had them was, indeed, correct. After all, we eventually took down our dining room to accomodate one.
Yep. That's our vacuum room, and we love it.
What about the color green? Oh, he still loves it!! And, frankly, I love that he loves it. After all, don't most of us have a favorite color? (Mine is pink!) I'll also admit to feeding into his love of green--green clothes, pjs and sheets. It's happy. And, whether its his perseveration or mine or none at all, I'm not sure.
When it comes to a favorite color and autism, I can't help but wonder, when does a simple interest stop and a "behavior" begin?
This entry was brought to you by an envelope that was sacrificed during our son's swim lesson so that The Mom Cave could represent the letter prompt "G" in Blogging A to Z April 2012.
"No he doesn't," I said defensively.
What was she trying to say, anyway? Was that a loaded statement? Was she saying that he had a thing for green and just liked it? Or, did she mean that he had a thing for it--in a developmentally disabled sort-of-way?
I was cautious of everyone in the pre-diagnosis days. Looks lingered a little too long. Words were spoken in hushed tones when people thought I couldn't hear. I tried to kill the conversation with my sister about the color green and just concentrate on our son's birthday. However, the topic did not go away.
"Your son has perseverations," I was told a year later by the man who, at the time, was trying to diagnose our son with autism. My eyes were stinging with tears, and my defenses were once again mounting.
"What are perseverations?" I asked.
"Extreme interests," he answered. "Liking something more intensely than others would." And then, that's when he said it. "For example, as in the way he enjoys the color green."
I hated that man.
"But, he's only two," I suggested. "Perhaps he just enjoyes the color." C'mon, people! Can't a kid just like something without it being wrong?
The psychologist shrugged, unconvinced, and let it drop.
Years later, I've come to grips with the meaning and presence of perseverations in our life. Anyone who had tried to tell me that our son had them was, indeed, correct. After all, we eventually took down our dining room to accomodate one.
What about the color green? Oh, he still loves it!! And, frankly, I love that he loves it. After all, don't most of us have a favorite color? (Mine is pink!) I'll also admit to feeding into his love of green--green clothes, pjs and sheets. It's happy. And, whether its his perseveration or mine or none at all, I'm not sure.
When it comes to a favorite color and autism, I can't help but wonder, when does a simple interest stop and a "behavior" begin?
This entry was brought to you by an envelope that was sacrificed during our son's swim lesson so that The Mom Cave could represent the letter prompt "G" in Blogging A to Z April 2012.
Friday, April 6, 2012
Should he Facebook?
My younger son wants a Facebook page.
I have it. Now he wants it.
I suppose I knew this day would arrive, but I truly expected his age to be in the double digits before it happened. Just for the record, I want to be clear: HE IS ONLY EIGHT!
He's a gamer, this child, and I'm blaming the whole notion of joining Facebook on his iPad, where he saw an evil little notice one day while playing Angry Birds.
"Mom! You have to mark this date on your calendar!" He said to me one day. "Angry Birds is coming to FACEBOOK!"
Good Golly, if I heard about Angry Birds on Facebook once after that declaration then I heard it a bazillion times. Angry birds on Facebook. Angry Birds on Facebook. Facebook. Facebook. You can just log into your Facebook, mom. Then you can get Angry Birds. Don't forget! Angry Birds. On your Facebook account, mom. Angry Birds.
BE QUIET!
Don't worry, that was just my inner voice. It yells at this kid a lot, particularly when he grabs onto an idea and is absolutely relentless in expressing it.
I don't care about Angry Birds. Sorry, friends. I do enjoy the game. It's just hard to kill pigs when you are doing grunt work with kids. By contrast, our son really, really cares about the game. Seriously. He's a geek about many games and can tell you far more than you would think imaginable about them, but Angry Birds?
Oh, Angry Birds is special. And, I guess the Facebook version of Angry Birds have some unique featers? Ooohhh, even more enticing for him!!
One day, I did the unthinkable. I logged into my Facebook account, I found that darned game, and I let him play. He was creating an avatar as I left the room, and I couldn't shake the feeling of dread. Letting my child into my Facebook account? At eight?
What's next, sex, drugs and rock & roll?
Before anyone even says anything, c'mon, My account's got nuthin' to hide. I'm a mom. This is all I do. All day. Every day. No secret lives are going on with this gal. But, I don't know, some people out there in computer world I'm not so sure about.
What I am sure about is how a child with high functioning autism can latch onto an idea and absolutely drag his mother into the ground discussing it. Letting him onto Facebook would feed the wild beast--at least until it develops a taste for something else.
Oh, dear, like Farmville.
Have I mentioned that he doesn't know anything about any of the other games on Facebook? Hm, letting him have his own unsearch-able, un-friendable account: Best Idea Ever or Run Away While I Still Can?
I think I already have my answer. What's yours?
This entry was written in response to the letter prompt "F" in the A to Z Challenge April 2012.
I suppose I knew this day would arrive, but I truly expected his age to be in the double digits before it happened. Just for the record, I want to be clear: HE IS ONLY EIGHT!
He's a gamer, this child, and I'm blaming the whole notion of joining Facebook on his iPad, where he saw an evil little notice one day while playing Angry Birds.
"Mom! You have to mark this date on your calendar!" He said to me one day. "Angry Birds is coming to FACEBOOK!"
Good Golly, if I heard about Angry Birds on Facebook once after that declaration then I heard it a bazillion times. Angry birds on Facebook. Angry Birds on Facebook. Facebook. Facebook. You can just log into your Facebook, mom. Then you can get Angry Birds. Don't forget! Angry Birds. On your Facebook account, mom. Angry Birds.
BE QUIET!
Don't worry, that was just my inner voice. It yells at this kid a lot, particularly when he grabs onto an idea and is absolutely relentless in expressing it.
I don't care about Angry Birds. Sorry, friends. I do enjoy the game. It's just hard to kill pigs when you are doing grunt work with kids. By contrast, our son really, really cares about the game. Seriously. He's a geek about many games and can tell you far more than you would think imaginable about them, but Angry Birds?
Oh, Angry Birds is special. And, I guess the Facebook version of Angry Birds have some unique featers? Ooohhh, even more enticing for him!!
One day, I did the unthinkable. I logged into my Facebook account, I found that darned game, and I let him play. He was creating an avatar as I left the room, and I couldn't shake the feeling of dread. Letting my child into my Facebook account? At eight?
What's next, sex, drugs and rock & roll?
Before anyone even says anything, c'mon, My account's got nuthin' to hide. I'm a mom. This is all I do. All day. Every day. No secret lives are going on with this gal. But, I don't know, some people out there in computer world I'm not so sure about.
What I am sure about is how a child with high functioning autism can latch onto an idea and absolutely drag his mother into the ground discussing it. Letting him onto Facebook would feed the wild beast--at least until it develops a taste for something else.
Oh, dear, like Farmville.
Have I mentioned that he doesn't know anything about any of the other games on Facebook? Hm, letting him have his own unsearch-able, un-friendable account: Best Idea Ever or Run Away While I Still Can?
I think I already have my answer. What's yours?
This entry was written in response to the letter prompt "F" in the A to Z Challenge April 2012.
Thursday, April 5, 2012
Enuresis, anyone?
Let's talk bladder control, shall we?
Here in The Mom Cave, we get down and dirty with our discussions. And, yes, that's right. I'm really going to write an entry about bladder control, a.k.a. enuresis (which is the term I hear allllll the time). It simply must be done--for my sanity as well as for the sanity of special needs parents walking the path behind me.
In fact, I think this post can spawn a slew of other posts under the heading:
Things I Did Not Consider I'd Be Doing When I Became a Parent (or something to that effect).
Number 1: Buying diapers for my ten-year-old.
It's not his fault. I do not blame him in the slightest. Many children with autism struggle with toilet training. Due to sensory processing delays, feeling the urge to use the bathroom may not come easily and could use the help of an occupational therapist. I was very proud and happy when our older son became day trained at the age of six.
We're still battling night training.
Flowers. In my next life, I want to smell of nothing but flowers. Because in my current life, I seem to bathe in urine and then bleach. Urine. Then Bleach--with a little extra fabric softener thrown in for those sheets and pjs that become soaked nightly.
Whoah, daddy, the amount of money we've spent in pajamas...
Our basement has mounds of laundry--the soiled sheets, the mattress pad, the chuckie to keep the mattress from being soaked. And, parents, please, I hope you have that mattress in a cover.
We've gone through a set or two of sheets and pjs a night.
We diapered. We double diapered. We double diapered with a liner. We went larger. We went smaller. We used rubber pants until he outgrew them. We used this brand and that brand then the brand that every person swore was the brand to get for special needs.
Nothing worked.
Yes. We tried the pee-pee pill. We tried a couple. They didn't work on his fragile digestive system. Drat.
Oh, and just for kicks, school breaks inroduce to our household a cousin to night enuresis, a daytime enuresis that happens along with the regression of skills due to the disruption in his therapy. It usually comes to stay for the week, or perhaps it lingers for an extra day or two once the routine of school has returned.
What's that saying about house guests and fish? They stink after three days? Enuresis never smells good.
Yet, along with the smell and the disgust that comes along with cleaning up after this issue is the realization that it can't be fun being the person who is suffering from it.
I wonder if it bothers our son to wear a diaper nightly? For, while he can't speak, he can certainly SEE. He knows that nobody else in the house wears diapers. Does that bother him?
I know it looks like he doesn't have emotions, but he does. He just can't express them.
What a terrible way to have to live.
I'm pretty sure that I can be reduced to cleaning urine and feces all day, and it wouldn't even come close to the feeling of being forced to live a life without dignity.
I think--no, I know it is such a thought that powers many parents like me on a daily basis.
Thinking of my fellow SpEd parents during Spring Break time! (Ours is next week) Good luck!
This entry was written in response to the letter prompt "E" in the Blogging A to Z Challenge April 2012.
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Visit Morgue File for all of your blogging photo needs--free of charge and free for public use.
Here in The Mom Cave, we get down and dirty with our discussions. And, yes, that's right. I'm really going to write an entry about bladder control, a.k.a. enuresis (which is the term I hear allllll the time). It simply must be done--for my sanity as well as for the sanity of special needs parents walking the path behind me.
In fact, I think this post can spawn a slew of other posts under the heading:
Things I Did Not Consider I'd Be Doing When I Became a Parent (or something to that effect).
Number 1: Buying diapers for my ten-year-old.
It's not his fault. I do not blame him in the slightest. Many children with autism struggle with toilet training. Due to sensory processing delays, feeling the urge to use the bathroom may not come easily and could use the help of an occupational therapist. I was very proud and happy when our older son became day trained at the age of six.
We're still battling night training.
Flowers. In my next life, I want to smell of nothing but flowers. Because in my current life, I seem to bathe in urine and then bleach. Urine. Then Bleach--with a little extra fabric softener thrown in for those sheets and pjs that become soaked nightly.
Whoah, daddy, the amount of money we've spent in pajamas...
Our basement has mounds of laundry--the soiled sheets, the mattress pad, the chuckie to keep the mattress from being soaked. And, parents, please, I hope you have that mattress in a cover.
We've gone through a set or two of sheets and pjs a night.
We diapered. We double diapered. We double diapered with a liner. We went larger. We went smaller. We used rubber pants until he outgrew them. We used this brand and that brand then the brand that every person swore was the brand to get for special needs.
Nothing worked.
Yes. We tried the pee-pee pill. We tried a couple. They didn't work on his fragile digestive system. Drat.
Oh, and just for kicks, school breaks inroduce to our household a cousin to night enuresis, a daytime enuresis that happens along with the regression of skills due to the disruption in his therapy. It usually comes to stay for the week, or perhaps it lingers for an extra day or two once the routine of school has returned.
What's that saying about house guests and fish? They stink after three days? Enuresis never smells good.
Yet, along with the smell and the disgust that comes along with cleaning up after this issue is the realization that it can't be fun being the person who is suffering from it.
I wonder if it bothers our son to wear a diaper nightly? For, while he can't speak, he can certainly SEE. He knows that nobody else in the house wears diapers. Does that bother him?
I know it looks like he doesn't have emotions, but he does. He just can't express them.
What a terrible way to have to live.
I'm pretty sure that I can be reduced to cleaning urine and feces all day, and it wouldn't even come close to the feeling of being forced to live a life without dignity.
I think--no, I know it is such a thought that powers many parents like me on a daily basis.
Thinking of my fellow SpEd parents during Spring Break time! (Ours is next week) Good luck!
This entry was written in response to the letter prompt "E" in the Blogging A to Z Challenge April 2012.
************************
Visit Morgue File for all of your blogging photo needs--free of charge and free for public use.
Wednesday, April 4, 2012
Divorce
Truthfully, if you ask, I can't remember how long I've been married. But, give me time. I can figure it out. Mama's just a little fried.
My husband is a really, really good sport about that and so much more. I poke fun at our crazy life and what it has done to our marriage, but that doesn't mean I don't every now and then consider the what ifs.
What if we couldn't agree on how to care for the many needs of these children?
What if one day we look at each other and don't recognize who we married?
What if we've grown in different directions?
What if we divorced?
Once a young bride full of hope for our future, I still remember looking at my groom as we said our vows. For better or for worse.
All those years ago, could we ever have imagined that one day we would be two ships sailing past each other in a sea of doctors, bills, hospitals, therapists, adaptive equipment, IEPs and CSEs?
I know that I didn't.
We sleep all over the house.
We eat at all hours--or not at all.
Looking hot takes a back seat to putting out fires.
We are buried. But, then, in the middle of some nuclear meltdown from one of our children, one spouse will cut the other a look, a look that says, "Are you kidding me? Is this really happening? How the heck did we get here?"
That's when I think, no, not today. Divorce is not going to happen to us today.
April is Autism Awareness month. Thanks in advance to all of you who take the time this month to think about those whose lives it touches and how we can make this world more autism-friendly.
*********************************
This entry was written in response to the letter prompt "D" in the Blogging A to Z Challenge April 2021.
My husband is a really, really good sport about that and so much more. I poke fun at our crazy life and what it has done to our marriage, but that doesn't mean I don't every now and then consider the what ifs.
What if we couldn't agree on how to care for the many needs of these children?
What if one day we look at each other and don't recognize who we married?
What if we've grown in different directions?
What if we divorced?
Once a young bride full of hope for our future, I still remember looking at my groom as we said our vows. For better or for worse.
All those years ago, could we ever have imagined that one day we would be two ships sailing past each other in a sea of doctors, bills, hospitals, therapists, adaptive equipment, IEPs and CSEs?
I know that I didn't.
We sleep all over the house.
We eat at all hours--or not at all.
Looking hot takes a back seat to putting out fires.
We are buried. But, then, in the middle of some nuclear meltdown from one of our children, one spouse will cut the other a look, a look that says, "Are you kidding me? Is this really happening? How the heck did we get here?"
That's when I think, no, not today. Divorce is not going to happen to us today.
April is Autism Awareness month. Thanks in advance to all of you who take the time this month to think about those whose lives it touches and how we can make this world more autism-friendly.
*********************************
This entry was written in response to the letter prompt "D" in the Blogging A to Z Challenge April 2021.
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