Is The Life Of An Autistic Person Worth Saving?

Hi everyone! This is a call to arms! Nikki at Dysfunctional Dose  posted a story about a young man named Paul. 23-year-old Paul does not, and never has, drink or smoke. He loves, and is loved by, his family, which includes his mother, a sister, and two little nephews, among others. He enjoys creative writing, and has written a preteen novel called Isaac The Runner. Paul has a serious heart condition, and if he does not get a heart transplant, his life will be in danger. 


However, Paul was recently denied a placement on the heart transplant list. Why? Because Paul has autism. 


Most people who have children with special needs will not hesitate to say that they are their child's biggest advocate. This is true for Paul's mother. She is ready to do anything she needs to do to get her boy onto that heart transplant list! One thing she's done is create a petition on Change.org. She plans to send it to the heart transplant committee that denied her son, as well as her state officials, the senate, the House of Representatives, and even the US President. 


If you would take a minute to sign the petition, it would mean a ton to Paul and his family! 


Also, you might want to check out Paul's book! I know this blog is read by some teachers, and you might consider incorporating this book into a creative writing unit! Reading it and learning that it was written by someone with autism may raise their confidence and inspire them to try their own hand at writing!


Thanks, everyone! 

Special Education Can Be Painful!

The more comfortable Billy gets at school, the more "good" moments he has. For instance, today he participated at Calendar by putting his name up on the attendance chart, and saying the date with the others. He "wrote" in his journal by pointing to pictures for me to cut out, and then pasting them on a page, he sat with the others for most of speech therapy and answered the questions the therapist asked him, and he sat with us before reading and read some site words that the teacher showed him. (He still wore his backpack all day, and kept on snatching the "HOME" symbol from the schedule, though.)
However, the more comfortable he gets, the more painful his "bad" moments get. 
By painful, I mean painful for me. Billy likes to pinch when he's angry. Apparently he saves this for those he knows and loves. Before, all he would do is slap me, which didn't hurt, and he would stop when I told him, "Quiet hands, please." I miss those days!
This is what happened yesterday when I tried to stop Billy from knocking everything off the top of a file cabinet because he didn't want to do math. 

And this is what happened today when I told him it wasn't time for a computer break yet! 

That boy pinches hard! Its actually like an Indian burn, where he grabs your arm and twists your skin. He's strong, too, for an 8-year-old. He's about chest-height to me, and he's husky.
When my dad saw, he looked alarmed and said, "You should quit that job." When my mom saw, she said, "Did you tell the principal about this?" They can't imagine working somewhere where people pinch you! I tried to explain to them that this is actually pretty common. I haven't worked with children who pinch this hard since back in the days when I worked with preschoolers with Reactive Attachment Disorder... they would also spit in your face and throw chairs at your head... but I've known plenty of other people who work with kids whose arms are always bruised up. 1:1 aides seem to get it the worst! 
Anyway, I'm kinda proud of my bruises. They're like battle scars.
I'm just glad he doesn't bite! (Knock on wood!)

Please Excuse My Friend For Throwing A Phone At Your Head!

Each day with Billy seems to be getting a little better. The cellphone thing is really working, and he will sometimes even hand it to me, when it's time to get back to work, instead of making me wrestle it out of his hands!


Funny story about the phone though. Billy hates going to the playground. He wants nothing to do with it and thinks it's the stupidest idea in the world. Unfortunately, the whole rest of the class feels the opposite way, so we have to endure a playground break each day when it's not too hot. The last two times, Billy spent playground time yelling, "Playground finished! Goodbye, playground!" while I held him back to keep him from running off towards the parking lot. (And no, I can't just let him skip playground and let him spend the time in the classroom, which would make sense, because apparently aides can never be left alone with children.)


So today I told Billy he could bring the cellphone outside with him. I thought it would keep him occupied and help him stay calm.


It didn't seem to make a difference. As soon as we got outside, the first thing Billy did was try to make a run for the parking lot, looking for the buses so he could jump on one and get home!


 I think the best thing to do when Billy gets upset is just to get super, super calm yourself, and talk in a very quiet, even voice. So there I am, hanging onto Billy, while he is hollering and scratching, slapping and pinching my legs, and I'm gently cooing, "Quiet hands, please." (He can reach my legs in order to slap me, even when I'm holding him, because he's tall for an eight-year-old, and I'm pretty short.) 
There were these other teachers and aides out there with some highschoolers, sitting on the benches and taking a break. They were all watching the entertaining scene happening in front of them.


Finally, Billy seemed to calm down. I was kind of rocking him, and he was muttering something like "Seatbelt, seatbelt, seatbelt..." Then he asked sweetly, "Phone, please?" 


Thank goodness! Now Billy would relax and play with his phone, and I could take a breath! I took the cellphone out of my pocket and handed it to Billy. 


He looked at it for a minute. Then he chucked it at the people sitting on the bench. Luckily, it sailed over their heads, and landed just past the bench, appearing to break into pieces. (It was really just the front, back, and battery that separated.) I told Billy, "If you do that, it will break!  Then you won't have it at school any more!"


One of the teachers on the benches picked up the phone and handed it to me. My next idea was to turn it into a learning experience and let Billy try to put it back together. He actually sat down in the grass and worked on it quietly. He managed to put the battery in, but it was backwards, and he couldn't figure out how to put the cover on. I showed him how.


Then he chucked it again! 


This time he threw it out in an open, grassy area, and I made him come with me to get it. It hadn't broken this time. So Billy threw it again. I didn't mind. We were in the grass now, not around other people, and this was actually a step up from where we'd been ten minutes earlier!


Fifteen hours minutes later, our classroom teacher called the kids to line up. I towed Billy back into the school. As we walked past the high school teachers and aides, I heard one of them say, "I can't believe she let him do that to her phone!"


The rest of the day went fairly well. I literally cannot take my eyes off of Billy for a second, because he'll either be eating something, climbing something, or dashing for the door. So the three hour program seems like forever! He did sit in the group for calendar and reading, did three reading worksheet with me, decorate a fun foam visor, and watch and listen during music therapy. (My new favorite person on earth is the super laid back music therapist, who, when I was trying to haul Billy over to where the rest of the group was sitting, told me, "Pick and choose your battles. Let him sit back there if he wants." She then let him help her open and shut the CD player whenever she switched songs, and at the end told him, "Thanks for being my DJ, Billy!" I <3 you, music therapist!) 


So I think its going better, but I'd be interested in any advice anyone might have to give me! Keep in mind that we don't have a sensory room or motor room at our school, we don't have a Time Out room,  and the teacher and aides think its very important for Billy to be doing what the rest of the group is doing at all times. 


By the way, as for me and Billy... I already love the kid, of course! Even when he's trying to kill me. Its hard to resist him during his calm moments when he sits in my lap and plays with the tags on my lanyard, points to the picture on my ID and mutters, "That's Angel!" He's a good boy. He just doesn't want to be there. And I can't really say I blame him! 

Yay For A Better Day!

I don't know if anyone is actually reading these blog entries, but if you did read my last two posts about Billy, I must have sounded like a horrible person torturing a poor child with autism! (If you didn't read those posts, Billy is the little boy I'm working as a 1:1 aide with for an ESY program, and he had a very tough time adjusting during the first week... he basically just hollered all day long! The other aides were irritated because they thought I should be somehow forcing Billy to sit quietly through all of the activities, even if he wasn't able to participate at all.)
Some of Billy's behaviors remind me a lot of the first little boy I was a 1:1 for, Tommy. He also had autism, although he was much more verbal than Billy, and also extremely smart. (Billy has an intellectual impairment as well as autism.) Like Billy, Tommy had trouble sitting through long group activities, and would start acting out. One of the things the teachers had already done for Tommy, before I started working there, was to make him a little chart with four boxes on them. Each of the first three boxes was equal to five minutes of work or group time. Whenever Tommy sat and did what he was supposed to do for five minutes, he got a star in one of the boxes. After fifteen minutes, he'd get to take a break. (The fourth box had a Pecs symbol for break in it.) Tommy was usually able to sit for fifteen minutes, when he could see that he was getting closer to a break. After a while I started waiting longer and longer to give Tommy each star. Pretty soon he was able to sit through almost an entire group activity before taking a break!
I thought maybe this same system might work for Billy. So, over the weekend, I made this.(There is a phone instead of a break symbol, because Billy loves phones, and he has an iPhone plus an old cell phone of mine to play with during his breaks.)

I put it into action today, starting when Billy first got to school. I showed him the card and, pointing to each box, explained, "Work, work, work, phone." Then I sort of ushered him over to the calendar area. Billy almost never sits on the floor like the other kids. Even when you give him a chair, he squats on it like a frog instead of sitting on it! He squatted on the chair for fifteen minutes, though, and participated in Calendar time as best as he could. He was able to tell the teacher that it was Monday and that the month was July, and he helped name some of the pictures on the schedule. Then he happily went to the other side of the room for his phone time! 


The only difficult part was parting with the phone at the end of the break. I would tell him he had one minute left, and after a while tell him he had ten seconds, and count down from ten. I would give him a chance to put the phone away. But usually I ended up wrestling the phone out of his hand and putting it up where he couldn't reach! However, once it was away, he did come and do the work he needed to do. 


In math, he did a whole packet of counting worksheets. (He can't really count, but he said the numbers as I touched the items, and he pointed to the number I asked him to.) During social skills, he was starting to get irritable, and had gone and put on his backpack in hopes of getting to go home! But he sat on my lap and answered some simple questions like his name and age. In reading, he sat on my lap with the group and helped name some pictures and some alphabet letters. And in OT, he colored a picture of the world green and blue and glued it onto another sheet of paper. (The OT, by the way, did not seem like the kind of person who should work with children! She spoke in a monotone, acted as if she were about to fall asleep at any minute, and never once cracked a smile.)


Billy was so happy when the day was over! I told him he did great work and that he should tell his Mommy what a good job he did. 


I feel good. Last week, at the end of each day, I left feeling discouraged and sad, and sort of trapped because I didn't really want to go back but I knew I had to. But today, I left feeling happy, the way I used to feel after a day of student teaching. Like I had really accomplished something. And now I can't wait for tomorrow! 


By the way, I also had to make this picture for Billy. LOL!

Miss Read Gets Her Butt Kicked By An 8-Year-Old!

Hi everyone! Today was the first day of my summer job as a 1:1 aide in an ESY program. Actually, yesterday was really my first day, but the kids weren't even there... it was just a training day... so it doesn't count.

Today certainly counts. 

Okay. So I'm placed in a classroom for 3rd and 4th graders with moderate to severe intellectual impairments. There are about 10 kids in there, including my little guy, Billy. There is one teacher, one classroom aide, and one other aide who is a 1:1 for another child.

The teacher is a high school teacher during the school year. She does work with high schoolers with special needs, but not anywhere as severe as the needs these ESY kids have. She has never worked in an elementary school. She has never worked with children with this level of intellectual impairments. So she came to school armed with plans for activities that would have been awesome, even perfect, for a group of typically developing elementary school children, or children with mild intellectual disabilities, or children with ADHD, learning disabilities, Aspergers, or just about any other children other than the ones in our classroom. But these kids, who only spoke in one or two word sentences, were ill prepared for activities such as that one ice breaker where you have a list of random traits, such as, "likes strawberry ice cream," and you have to go around the room asking everyone questions in order to match a name to each trait. So basically, the teacher had planned each activity to last about forty-five minutes, and each activity really lasted only about fifteen minutes. 

Meanwhile, there was my little Billy. 

Billy is a little guy with autism as well as an intellectual impairment. He needs a lot of structure. I don't mean, structure helps him. I mean, the poor little dude was flipping out all day because he had no idea what was going on! The ESY program is not located at Billy's home school, so he was suddenly in a different classroom with different teachers and different kids, and nobody was doing anything that he expected him to do!

In fact, for the first hour, poor Billy just kept on trying to run for the door. He wanted out! He kept pleading, "All done school! Bye bye, school!"

Finally, I got him to sit in my lap on a chair, where I basically physically restrained him for the entire morning. Billy didn't mind being physically restrained... in fact, when i tried to let him sit regularly on my lap, he took my arms and put them back around him. I think the deep pressure was relaxing to him.  I sat there with him and talked very quietly to him, rocking him from side to side on my lap, and he calmed down. 

(Oh yeah... it turns out he's supposed to have a weighted vest on for the first part of the morning, to help him transition. Except the ESY program does not have the weighted vest. Nobody does. It doesn't exist.) 

Eventually I was able to somewhat move him in the general direction of his desk, where I continued to sit and hold him. Any activity the class did, Billy screamed, "No!" Any activity I tried to do with him alone, he screamed, "No!" He refused everything, including snack, and including the Dr. Seuss book his mom had sent in his backpack!

And the worst thing was, although we had a visual schedule, the schedule became useless after the class blew through all of the planned activities within the first hour and a half. We couldn't even take them outside to the playground, because the temperature was 101 and they would have all collapsed. The teacher was great at spontaneously coming up with more activities for the class to do. Which Billy refused, of course. And since the schedule no longer existed, I had no way of even showing him how much time was left. I couldn't tell him, "We'll do math, and then story, and then home." He can't tell time, so telling him, "We'll leave at 11:30 meant nothing to him. All I could say was, "Soon!" So the poor little boy pleaded all day, "Go home?" and all I could say was, "After school, we go home."

Towards the end of the day, Billy did manage to do a few things. I took him for about ten walks. He was very good as we walked. He was calm, and held my hand, and decided which way we should go. (He said, "LEFT!" no matter which direction he wanted to go in.) He didn't try to run away, even when he spotted doors. And whenever we got back to our classroom, Billy walked right back in. 

He also liked writing on a small whiteboard. He would write the letter B for Billy, over and over. 

And he did accept a Nilla Wafer from the teacher, who was passing them out in desperation because she had really run out of activities. He must have been hungry by then. After he ate it, he asked sweetly, "Cookie again?"

Transitions and down time are obviously going to be very difficult for Billy. I asked the teacher for an individual picture schedule for him, although it won't help on days when the teacher is just making up activities as she goes along! I also asked the teacher to put a stop sign on the door. Not that Billy will necessarily obey traffic signs... but it might help! 

Meanwhile, I am exhausted.

It's going to be a fun month! 

Teachers Do Amazing Things!

Hi everyone! I know we've been hearing a lot lately about teachers doing rotten things, especially to children with special needs. There have been several stories of parents who, after becoming suspicious that their kids weren't alright, actually "bugged" their kids with hidden cameras or microphones, and recorded teachers doing nasty things. A teacher in Alabama was recorded saying things to a child with cerebral palsy things such as, ""Keep your mouth closed and don't drool on my paper. I do not want to touch your drool. Do you understand that? Obviously, you don't." A New Jersey special education teacher was recorded calling a student a "tard," swearing at students,  and more. Another special ed teacher made fun of a student's weight, swore at her, and made her run on a treadmill for hours. A special ed teacher in Georgia physically and sexually abused students who had severe physical and cognitive abilities by doing things like groping them, purposely bending their fingers too far back in order to cause pain, and slamming students down into their chairs. A high school special education student in Georgia actually died after a teacher put a homemade neck brace on him to force him to keep his head straight, although this position restricted his breathing. The same teacher had also passed gas in the student's face and spilled him out of his wheelchair. There was the teacher who stuffed a child into a duffel bag as a punishment, and another teacher who sealed a student into a cardboard box. The stores go on and on! Stories on the Internet would lead anyone to believe that all teachers are eager to abuse the children who are the most vulnerable and the least able to report it. 
So, when I read a blog entry by a mother of a child with autism, I thought I'd "report" it here. 


Lexi, who blogs at Mostly True Stuff, is the mother of four children. One of her little boys has autism. Casey is about 8, and is a really awesome little dude. And he and I have something in common... we both love butterflies! Any way, today Lexi blogged about a very cool routine Casey's teacher has created for him. Three mornings a week, the teacher plays music, and Casey dances in the front of the class while his classmates cheer for him! 
(Obvious note: This would only work if the student in question is into it. I know most of the people who read this blog don't need that reminder... but since we were just talking about teachers who do stupid things, I thought I'd mention it in case anyone like that ever reads my blog. Its not a punishment. Casey loves it, his friends cheer for him, and it is a very positive part of his school life.) 


There is actually a video showing Casey doing the "Casey Dance." I didn't want to post it here, because I thought it would be cool for you guys to go over and check out the video here on Lexi's blog. That way, maybe you can drop a comment and tell Casey what a great dancer he is!