Many years ago, I sat in the small blue room that was once our family room. Far from spacious, the room felt even smaller due to the presence of large plastic toys that were scattered about.
We had two toddlers in the house.
Little Brother was approaching three, and we had yet to discover signs of autism in him. Chatty and agreeable, his head covered with golden curls, he seemed to enjoy the constant buzz of therapy in our home. At that time, Big Brother was not quite five. It had been nearly three years since he had been diagnosed with autism and entered the state's Early Intervention program. Yet, despite our tireless efforts with him all day long, day in and day out, his autism had only blossomed as he had grown.
In our small family room on that bright, sunny afternoon, both of our sons were conducting full-blown tantrums. It was summer "vacation" time, you see. There was not a therapist in sight. I was alone without my support system, and our two children were having nuclear melt-downs all because of the darned television.
That dreaded thing. As a parent, I had such a love/hate relationship with it.
On the most basic level, our older son required so much from us. He moved simply all day long. He slept but three hours a night, a period of time that was broken down into twenty-minute cat naps. By sunrise each day, he was awake and ready to leave the house. He wanted to move. He wanted out. He wanted to go, go, GO!
I did not know that he was in flight mode, scared by sensory overload, afraid of absolutely everything around him. I just knew that he never stopped moving, never stopped crying and never failed to vomit his food onto every outfit that I wore.
You bet I turned to the television for help.
I didn't care if the programming was aimed to build his brain cells or to suck them out, I would have played anything on that television that caught his attention. I would have played it continually, so that I could have sat down on the couch. I probably would have had a good long cry and then slept for as long as I dared. No, I'm not one bit ashamed to admit that I yearned to find eye candy for my son from the Old Boob Tube in those days. I wanted a visual babysitter.
Alas, I did not get it.
We purchased a library of entertainment DVDs in an attempt to foster his interest in television. And, when he began therapy, we even purchased sign language and vocabulary DVDs--anything to help move his development along. Nothing seemed to grab his attention. In fact, we couldn't even get him to stay in the same room with the TV.
Soon, Little Brother developed into his own person, and, well, it seemed that he actually did not mind the television so much. Television made him smile. I found that to be simply adorable. He would laugh at the characters on the TV, dance around the room in delight and interact with the program. To have a child in our household delight in television was a novel experience--both for that child and for his parents.
We wanted to preserve that experience for him; however, that was not so easy. Because, as our younger son chose a favorite program or two to watch, television became a power struggle:
Little Brother turned it on and smiled.
Big Brother walked into the room, detached from us all and turned it off.
Little Brother yelled, turned the TV on and then smiled.
Big brother clicked it quickly off without a word and left the room.
Little Brother cried big, fat tears as I turned the TV on.
Big Brother returned to the room, turned off the TV and walked back out of the room.
"Mister (using all of his names), your brother is allowed to watch TV!!" I scolded our older son. "You do not own everything in this home!"
Yet, as soon as I would turn on the television, he would mechanically walk back in, pushing a favored toy vacuum, never making eye contact, and he would turn off that TV.
"You know," one of his therapists told me when I complained about the situation, "he could be having an auditory sensory aversion to the frequency of that TV set."
What?
That's when it hit me: The dishwasher. The microwave. The baby monitors that we used in the upstairs bedrooms. The hairdryers. The laundry machines and countless other household items. He turned all of them off as well. She was right.
I walked into the family room and turned on our television set. To me, it sounded like any normal TV. There was no offensive static. No ringing. No extraneous hum. Nothing. Whatever he heard from it that was so bothersome was lost on me, and, I then realized just how much about autism, also, was lost on me. In those early days, the learning curve was large, and I felt the responsibility of every last bit of it.
One could never understand, truly, how many sensory offensive sounds there are in this world until one has to try to desensitize her autistic child to them. Every sound was a battle.
This is how I found myself in the small blue family room of our home that sunny day during summer "vacation" when both of the boys were throwing tantrums over the television set. I was told to work on desensitizing our older son to the sounds that offended him around the home. He needed to learn to live and cope with these sounds so that he could better live in our world. And, the first battle, on behalf of Little Brother, was the television, so that Little Brother could enjoy the right to watch a television program in peace.
We sat there during summer "vacation", and we started slowly. For two minutes the TV would be on. Then, for two minutes the TV would be off. Two minutes on. Two minutes off. When this routine became predictable and comfortable to both, I would slowly increase the intervals.
My hope was that, soon, Little Brother would be watching his program.
On Monday, they cried at two minutes.
On Tuesday, they cried at two minutes.
On Wednesday, they cried at two minutes.
On Thursday, they were still crying at two minutes.
And here we were on Friday, and they were still crying at two-minute intervals. No progress.
They were having full-blown tantrums every time the timer sounded and I changed the status of the television. There was no therapist in sight to help me, and I was ready to lie down on the floor and tantrum along with them.
One child wanted the TV. One child could not tolerate the TV no matter where in the house he stood. I wondered how a family with autism ever functioned in the world with out going completely insane? We seemingly could not even learn even the most basic of things.
Today, I look back on those times with greater understanding. The first is that I was dealing with not one but two children with autism. Processing, aversions and transition difficulty ran abound on levels that I did not even understand at the time; however, beyond that, I am now able to appreciate the journey at this stage on our path.
And it took so long!
Who knew that some people with autism have to learn to appreciate a television set? So long ago, I surely did not! Our older son did. Just as we had to teach him to tolerate tooth brushing and haircuts and how we are still teaching him to keep his clothes on if they get wet.
The journey is long, and too many times along the way I have wanted to lie down along the path with my tantruming kids and forget about it all. The early days are the hardest for this reason. For my family, nearly twelve years into life with autism, time has been on our side. Now, every once in a while, I am able to look back and appreciate how far we have come.
************
This entry was written in response to the writing prompt, "Television", issued by the Group Blogging Experience 2 (GBE2).
We had two toddlers in the house.
Little Brother was approaching three, and we had yet to discover signs of autism in him. Chatty and agreeable, his head covered with golden curls, he seemed to enjoy the constant buzz of therapy in our home. At that time, Big Brother was not quite five. It had been nearly three years since he had been diagnosed with autism and entered the state's Early Intervention program. Yet, despite our tireless efforts with him all day long, day in and day out, his autism had only blossomed as he had grown.
In our small family room on that bright, sunny afternoon, both of our sons were conducting full-blown tantrums. It was summer "vacation" time, you see. There was not a therapist in sight. I was alone without my support system, and our two children were having nuclear melt-downs all because of the darned television.
That dreaded thing. As a parent, I had such a love/hate relationship with it.
On the most basic level, our older son required so much from us. He moved simply all day long. He slept but three hours a night, a period of time that was broken down into twenty-minute cat naps. By sunrise each day, he was awake and ready to leave the house. He wanted to move. He wanted out. He wanted to go, go, GO!
I did not know that he was in flight mode, scared by sensory overload, afraid of absolutely everything around him. I just knew that he never stopped moving, never stopped crying and never failed to vomit his food onto every outfit that I wore.
You bet I turned to the television for help.
I didn't care if the programming was aimed to build his brain cells or to suck them out, I would have played anything on that television that caught his attention. I would have played it continually, so that I could have sat down on the couch. I probably would have had a good long cry and then slept for as long as I dared. No, I'm not one bit ashamed to admit that I yearned to find eye candy for my son from the Old Boob Tube in those days. I wanted a visual babysitter.
Alas, I did not get it.
We purchased a library of entertainment DVDs in an attempt to foster his interest in television. And, when he began therapy, we even purchased sign language and vocabulary DVDs--anything to help move his development along. Nothing seemed to grab his attention. In fact, we couldn't even get him to stay in the same room with the TV.
Soon, Little Brother developed into his own person, and, well, it seemed that he actually did not mind the television so much. Television made him smile. I found that to be simply adorable. He would laugh at the characters on the TV, dance around the room in delight and interact with the program. To have a child in our household delight in television was a novel experience--both for that child and for his parents.
We wanted to preserve that experience for him; however, that was not so easy. Because, as our younger son chose a favorite program or two to watch, television became a power struggle:
Little Brother turned it on and smiled.
Big Brother walked into the room, detached from us all and turned it off.
Little Brother yelled, turned the TV on and then smiled.
Big brother clicked it quickly off without a word and left the room.
Little Brother cried big, fat tears as I turned the TV on.
Big Brother returned to the room, turned off the TV and walked back out of the room.
"Mister (using all of his names), your brother is allowed to watch TV!!" I scolded our older son. "You do not own everything in this home!"
Yet, as soon as I would turn on the television, he would mechanically walk back in, pushing a favored toy vacuum, never making eye contact, and he would turn off that TV.
"You know," one of his therapists told me when I complained about the situation, "he could be having an auditory sensory aversion to the frequency of that TV set."
What?
That's when it hit me: The dishwasher. The microwave. The baby monitors that we used in the upstairs bedrooms. The hairdryers. The laundry machines and countless other household items. He turned all of them off as well. She was right.
I walked into the family room and turned on our television set. To me, it sounded like any normal TV. There was no offensive static. No ringing. No extraneous hum. Nothing. Whatever he heard from it that was so bothersome was lost on me, and, I then realized just how much about autism, also, was lost on me. In those early days, the learning curve was large, and I felt the responsibility of every last bit of it.
One could never understand, truly, how many sensory offensive sounds there are in this world until one has to try to desensitize her autistic child to them. Every sound was a battle.
This is how I found myself in the small blue family room of our home that sunny day during summer "vacation" when both of the boys were throwing tantrums over the television set. I was told to work on desensitizing our older son to the sounds that offended him around the home. He needed to learn to live and cope with these sounds so that he could better live in our world. And, the first battle, on behalf of Little Brother, was the television, so that Little Brother could enjoy the right to watch a television program in peace.
We sat there during summer "vacation", and we started slowly. For two minutes the TV would be on. Then, for two minutes the TV would be off. Two minutes on. Two minutes off. When this routine became predictable and comfortable to both, I would slowly increase the intervals.
My hope was that, soon, Little Brother would be watching his program.
On Monday, they cried at two minutes.
On Tuesday, they cried at two minutes.
On Wednesday, they cried at two minutes.
On Thursday, they were still crying at two minutes.
And here we were on Friday, and they were still crying at two-minute intervals. No progress.
They were having full-blown tantrums every time the timer sounded and I changed the status of the television. There was no therapist in sight to help me, and I was ready to lie down on the floor and tantrum along with them.
One child wanted the TV. One child could not tolerate the TV no matter where in the house he stood. I wondered how a family with autism ever functioned in the world with out going completely insane? We seemingly could not even learn even the most basic of things.
Today, I look back on those times with greater understanding. The first is that I was dealing with not one but two children with autism. Processing, aversions and transition difficulty ran abound on levels that I did not even understand at the time; however, beyond that, I am now able to appreciate the journey at this stage on our path.
And it took so long!
Who knew that some people with autism have to learn to appreciate a television set? So long ago, I surely did not! Our older son did. Just as we had to teach him to tolerate tooth brushing and haircuts and how we are still teaching him to keep his clothes on if they get wet.
The journey is long, and too many times along the way I have wanted to lie down along the path with my tantruming kids and forget about it all. The early days are the hardest for this reason. For my family, nearly twelve years into life with autism, time has been on our side. Now, every once in a while, I am able to look back and appreciate how far we have come.
************
This entry was written in response to the writing prompt, "Television", issued by the Group Blogging Experience 2 (GBE2).
Fascinating article. If it were me, I think I'd be throwing the biggest tantrum. How much does the TV stay on twelve years later?
ReplyDeletehttp://joycelansky.blogspot.com/2013/04/atoz-x-for-expelling-gas.html
I always suspected that my Nathan was on the spectrum but he wasn't officially diagnosed until he was fifteen. This reminded me of when Bear and Nathan were little. Bear thought he ran the world--everything needed to be just the way he preferred it. Nathan just wanted to be left alone in peace and quiet. Bear's constant meltdowns and boisterous attitude put Nathan on edge. It's gotten better as they've aged but getting along is still a huge struggle for both of them.
ReplyDeleteTV is so difficult. Some kids like volume, some don't. In your case some on and some off. Hmmmm I'd go with the off and let the one who wants it on go to another room? But that's because I prefer it off unless one of my fave shows is on!
ReplyDeleteI've never been one to want the noise or the "company" of TV, but I come from a family of TV must be on people, even if no one has any idea what is on. UGH
Having them fight must be more annoying - possibly more annoying than TV noise!
They really have grown in so many ways in just this past year! I'm constantly amazed! At them and their parents!.