Being a habilitation therapist is one of the most challenging, most important jobs in autism world. A hab is in the home, day to day, working on all the most significant skills with a child. While a child might only see a speech therapist or occupational therapist once a week, the hab is there with him or her during every aspect daily life, working on speech skills and daily living skills and school readiness skills and social skills and feeding skills and everything else you could possibly imagine. It's the most important job in autism world.
And, like I said, the most challenging. Not everyone can do it, or do it successfully. We've had around twenty different people in and out of our home. There was the girl who always tried to get me to leave the house during her sessions (um, illegal!). There was the girl who didn't know what a belt was and flashed my son with her g-string. There was the guy who thought the military approach was best and would pin Beh's hands to the table until he "complied." There were a couple of talented people who would've been great if they'd showed up to work consistently, and without tell-tale red eyes.
The toughest situations were the ones where wonderful people who I really liked just weren't wonderful habs. One person was with our family for about a year, and while I loved her and knew she'd do anything for my kids, the chemistry just wasn't right with the boys. Another person I thought would be amazing, and I spent $500 I didn't have to get my consultant to train her (thank you student loans), but she just didn't have the gift.
But there have also been a few really gifted people, the rare treasures in the gravel. And we lost all but one of those gifted people because Nick aged out of early intervention or because they were so awesome they decided to go off to medical school or OT school to become even more awesome.
With all the habilitators who have filtered through our lives, I've never seen anything like this one, though.
She's a young college girl who has never been a habilitator before. Beh is her first and only client. Her only real experience is the time she spent in her mom's classroom over the years, seeing first-hand what life was like in a special needs classroom.
But she has the gift.
Rather than being timid or afraid or looking to me to tell her what to do, she just stepped in and played with Beh just like he was any other kid (which I, of course, think he is, but most other people see the autism first). She was calm and unafraid. The first couple of weeks were challenging as Beh was trying to figure out the relationship, but then it just *happened.* The magic.
She figured out what he loved and used it. He liked Goldfish crackers, so she rewarded him with those. He loved his Thomas the Tank Engine books, so she brought them to the table to work on letter writing. He would happily write J for James and E for Edward.
Whereas most other habs had struggled to get him to do things, all she has to do is speak to him. "Let's go write letters," "Let's go to the potty," and Beh jumps up, following after her.
Today, though, I saw the most amazing thing. After school Beh and his hab have a routine. She gives him a snack, then she takes him to the bathroom, then they do some school readiness skills at his little table. Today he finished his snack and took her hand to lead her to the bathroom.
So many habs have thought of potty training Beh as a battle they couldn't win. But here was Beh, going off to the bathroom--unprompted--taking his habilitator by the hand.
It's so simple, really--you take the time to know and love a kid, and he responds. It's so simple, but it's something that is so hard for most people to figure out.
She's going to head off to OT school someday so that she can work one on one with kids like Beh for the rest of her life, but until then, I'm going to hold on to her. Tight. Don't any of you think of stealing a single hour of her time for your kids! ;)
Tuesday, November 30, 2010
Wednesday, November 3, 2010
When your worst fears become reality
I love Nick for exactly who he is. As Shakespeare says, "Love is not love / Which alters when it alteration finds / Or bends with the remover to remove / O no! It is an ever-fixed mark." Autism does not alter my love for him, and I do not wish to remove any of who he is. I accept him for exactly who he is: a beautiful, joyful little boy who doesn't have many words to communicate with me.
My fear, though, is that the lack of words would keep me from knowing if something was wrong. What if he was sick? What if he was in pain?
What if someone hurt him?
Last night around 6:20 the principal of my boys' school called me. She needed to talk to me. She asked if she could come over to my house. She said she'd be here in ten minutes.
For ten minutes I worried and wondered. Did Noah get into trouble at school? Did Nick bite one of the children in his class? I feared she was coming to tell me that one of my kids was being expelled.
Instead she told me that it was an adult who had done wrong.
It wasn't the first time we'd had a conversation like this, about the same teacher. During the early weeks of school, while Nick was still absolutely freaking out about the transition to kindergarten (routines and consistency are so important in autism), Nick had gotten upset about a door. It seems like a simple thing, I know. The class was in the computer lab, and the computer teacher's office door was cracked open a little bit. Nick is horrifically OCD about doors--they NEED to be either all the way open or all the way shut--but he didn't have the words to tell this to the teacher. Instead of nicely sitting at a computer, he screamed and tried, over and over again, to run to the office door and shut it. His teacher tried to get him to work. She sat down in a chair in front of a computer and put Nick on her lap. She wrapped her arms around his torso to keep him still (basically restraining him), and my child is afraid when he is restrained. He bit the teacher.
And instead of gently pushing into the bite to free herself, she hit his face to get free. In doing so, she caused a lot of damage to herself--Nick's teeth tore at the skin and she began to bleed.
I listened to all of the perspectives. I talked to the district about trainings for dealing with aggressive behaviors. I provided options that work when Nick is upset. I thought that maybe, just maybe, the teacher didn't think clearly in the panic of the moment of being bit and that having trainings and options for dealing with Nick's tendency to bite when he is scared would make the difference.
Ten days ago Nick's class was in the library. Nick was sitting in a chair, as were all of the other children, and I'm completely thrilled that he was sitting along side his peers--this is major progress in our Autismland. Apparently Nick was swinging his feet, which all kids do, autism or no. The teacher grabbed Nick's feet to hold them still, grabbed them so hard that she threw my child to the floor. For swinging his feet in a chair.
He could have gotten a concussion when his head hit the floor. He could have broken his tailbone when his bottom hit the floor. And he wouldn't have been able to tell me any of it.
The teacher's responsibility when any child gets hurt is to report it immediately. Immediately. The teacher didn't. Eventually someone else who was in the library that day made their way to the principal and shared what they saw.
The district is promising "disciplinary action." But that doesn't help. My stomach still feels sick. How many other times did this teacher hurt my son in the ten weeks he was her student? How many other children have been hurt by her?
How many traumas have been unspoken?
The district is making new protocols and policies, and adminstration is making frequent visits to the special ed room. But none of it makes me feel any better.
My child was hurt, and I wasn't there to protect him. My child was hurt, and he didn't have the words to tell me about it.
There's nothing worse than that.
My fear, though, is that the lack of words would keep me from knowing if something was wrong. What if he was sick? What if he was in pain?
What if someone hurt him?
Last night around 6:20 the principal of my boys' school called me. She needed to talk to me. She asked if she could come over to my house. She said she'd be here in ten minutes.
For ten minutes I worried and wondered. Did Noah get into trouble at school? Did Nick bite one of the children in his class? I feared she was coming to tell me that one of my kids was being expelled.
Instead she told me that it was an adult who had done wrong.
It wasn't the first time we'd had a conversation like this, about the same teacher. During the early weeks of school, while Nick was still absolutely freaking out about the transition to kindergarten (routines and consistency are so important in autism), Nick had gotten upset about a door. It seems like a simple thing, I know. The class was in the computer lab, and the computer teacher's office door was cracked open a little bit. Nick is horrifically OCD about doors--they NEED to be either all the way open or all the way shut--but he didn't have the words to tell this to the teacher. Instead of nicely sitting at a computer, he screamed and tried, over and over again, to run to the office door and shut it. His teacher tried to get him to work. She sat down in a chair in front of a computer and put Nick on her lap. She wrapped her arms around his torso to keep him still (basically restraining him), and my child is afraid when he is restrained. He bit the teacher.
And instead of gently pushing into the bite to free herself, she hit his face to get free. In doing so, she caused a lot of damage to herself--Nick's teeth tore at the skin and she began to bleed.
I listened to all of the perspectives. I talked to the district about trainings for dealing with aggressive behaviors. I provided options that work when Nick is upset. I thought that maybe, just maybe, the teacher didn't think clearly in the panic of the moment of being bit and that having trainings and options for dealing with Nick's tendency to bite when he is scared would make the difference.
Ten days ago Nick's class was in the library. Nick was sitting in a chair, as were all of the other children, and I'm completely thrilled that he was sitting along side his peers--this is major progress in our Autismland. Apparently Nick was swinging his feet, which all kids do, autism or no. The teacher grabbed Nick's feet to hold them still, grabbed them so hard that she threw my child to the floor. For swinging his feet in a chair.
He could have gotten a concussion when his head hit the floor. He could have broken his tailbone when his bottom hit the floor. And he wouldn't have been able to tell me any of it.
The teacher's responsibility when any child gets hurt is to report it immediately. Immediately. The teacher didn't. Eventually someone else who was in the library that day made their way to the principal and shared what they saw.
The district is promising "disciplinary action." But that doesn't help. My stomach still feels sick. How many other times did this teacher hurt my son in the ten weeks he was her student? How many other children have been hurt by her?
How many traumas have been unspoken?
The district is making new protocols and policies, and adminstration is making frequent visits to the special ed room. But none of it makes me feel any better.
My child was hurt, and I wasn't there to protect him. My child was hurt, and he didn't have the words to tell me about it.
There's nothing worse than that.
Monday, November 1, 2010
Airplane Love
It's funny how the little things can change the world for a kid, especially a kid with autism.
Nick has kept to the same obsessions for most of his life. Letters. Numbers. Street signs. Trains. Cranes. He'd build and create the most elaborate of structures, but they were always based on the same small cluster of obsessions. He'd write words on the walls with wiki sticks, write lines of numbers up to 100 with chalk, build trains and cranes and street signs with Legos and waffle blocks and Brio sets.
And then, last month, something new came into his world.
It wasn't a planned gift at all, more of a "here's some kid stuff I have lying around--do you think your kids would want it" sort of thing. But the haphazard re-gifting reshaped Nick's reality.
It was an inexpensive glider, the kind where the wings slide into a slit on the body. I gave it to Noah, thinking he'd enjoy using a rubber band to launch it . . . but Nick was drawn to it. Intensely drawn to it.
All of the sudden there was a burst of language tied to the airplane. He'd ask to go outside because that was where the plane was, and once outside he'd say "airpwane, airpwane" until I retrieved it. He couldn't figure out how to make the plane fly, so he'd bring it to me to throw. "Ready, steady, fly!" he'd say when he wanted to see it soar. Soon he added "high in the sky."
The airplane got dirty and lost its nose; it got covered in red when Nick had a nosebleed yet didn't want to relinquish his toy. Eventually the airplane died, never made to withstand the love of a five-year-old boy.
But Nick wasn't deterred. Yesterday he took his Brio blocks outside . . . and built his own airplane. Throughout the day he added detail after detail, making the plane come alive.
This morning, after Noah went off to school, Nick asked to go outside. It was one of those amazing November mornings that you get only in Arizona--the air was alive with the warmth of spring, ignoring everything the calendar had to say. Nick and I played in the sun, taking turns flying the plane. I'd run around, flying the plane throughout the yard, up and down, dip and turn, while Nick chased after me, laughing. "Airpwane fly, high in the sky!" he'd say as the plane pirouetted in the air.
Soon it was time to come inside and prepare for kindergarten. Nick brought his airplane inside with him, and when it was time to take a bath, the airplane joined him. When it was time to eat a snack, the airplane was on the table next to his plate. When it was time to go to the bus stop, the airplane came along, too.
It's probably the only Brio block airplane to ever follow a boy through an afternoon of kindergarten.
Others of us might have been deterred when our original airplane died. Having invested so much love into it, we might have lost ourselves in tears or tantrums (for there are adult versions of those). Nick inspires me: he found a new love, loved it with all his heart . . . and when he lost what he loved so much, he made his own airplane, one much more beautiful than anything anyone could have ever purchased, one so much more amazing than anyone could have imagined.
The beauty of loss--there is so much to gain from it.
Nick has kept to the same obsessions for most of his life. Letters. Numbers. Street signs. Trains. Cranes. He'd build and create the most elaborate of structures, but they were always based on the same small cluster of obsessions. He'd write words on the walls with wiki sticks, write lines of numbers up to 100 with chalk, build trains and cranes and street signs with Legos and waffle blocks and Brio sets.
And then, last month, something new came into his world.
It wasn't a planned gift at all, more of a "here's some kid stuff I have lying around--do you think your kids would want it" sort of thing. But the haphazard re-gifting reshaped Nick's reality.
It was an inexpensive glider, the kind where the wings slide into a slit on the body. I gave it to Noah, thinking he'd enjoy using a rubber band to launch it . . . but Nick was drawn to it. Intensely drawn to it.
All of the sudden there was a burst of language tied to the airplane. He'd ask to go outside because that was where the plane was, and once outside he'd say "airpwane, airpwane" until I retrieved it. He couldn't figure out how to make the plane fly, so he'd bring it to me to throw. "Ready, steady, fly!" he'd say when he wanted to see it soar. Soon he added "high in the sky."
The airplane got dirty and lost its nose; it got covered in red when Nick had a nosebleed yet didn't want to relinquish his toy. Eventually the airplane died, never made to withstand the love of a five-year-old boy.
But Nick wasn't deterred. Yesterday he took his Brio blocks outside . . . and built his own airplane. Throughout the day he added detail after detail, making the plane come alive.
This morning, after Noah went off to school, Nick asked to go outside. It was one of those amazing November mornings that you get only in Arizona--the air was alive with the warmth of spring, ignoring everything the calendar had to say. Nick and I played in the sun, taking turns flying the plane. I'd run around, flying the plane throughout the yard, up and down, dip and turn, while Nick chased after me, laughing. "Airpwane fly, high in the sky!" he'd say as the plane pirouetted in the air.
Soon it was time to come inside and prepare for kindergarten. Nick brought his airplane inside with him, and when it was time to take a bath, the airplane joined him. When it was time to eat a snack, the airplane was on the table next to his plate. When it was time to go to the bus stop, the airplane came along, too.
It's probably the only Brio block airplane to ever follow a boy through an afternoon of kindergarten.
Others of us might have been deterred when our original airplane died. Having invested so much love into it, we might have lost ourselves in tears or tantrums (for there are adult versions of those). Nick inspires me: he found a new love, loved it with all his heart . . . and when he lost what he loved so much, he made his own airplane, one much more beautiful than anything anyone could have ever purchased, one so much more amazing than anyone could have imagined.
The beauty of loss--there is so much to gain from it.
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