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The End of OT

  • Posted on November 6, 2013 at 10:00 AM

Surprise! OT is ending! Not for everyone, of course, or even for everyone in my household. I recently had Willy’s IEP and we discussed how he no longer needed OT services. Yay?

Well, yeah! For the last year, Willy’s OT services have only been on a consult basis. The idea was to create strategies that Willy could implement independently within his various classrooms to manage his sensory needs, while staying in class as much as possible to meet those needs. This approach has been so successful that the consults are no longer needed. They were kept in place primarily to transition him to his high school experience.

Now that Willy’s been in high school for a couple of months, Willy has made his adjustments. He’s not wholly comfortable in his new environment, as indicated by his rather compulsive need to sharpen pencils to exert a sense of control over that environment, but he is making effective use of his strategies and he is also fully integrated into his classes. He’s able to advocate for his own needs and generally does so effectively.

There’s still progress to be made, but it’s no longer about OT and sensory regulation. The occupational therapist will be available if things change, but for now she’s not needed. That is big, big progress for my young man! So, yay it is!

It’s Here!

  • Posted on November 1, 2013 at 10:00 AM

Have you ever come out of an IEP meeting only to realize you negotiated away your child’s services to get something you thought he needed more? Are you worried it’s going to happen again, because you’re not sure what you did wrong? Are you preparing for you first IEP meeting, but worried about the truly horrific IEP stories you’ve heard?

You don’t need to worry anymore! Dr. Vaughn K. Lauer, a renowned expert in special education, has written a great guide that will teach you how to work with teachers, therapists, and administrators to get the services your child needs—all of them! Using real stories gathered from real people, Dr. Lauer shows readers how IEP meetings can go wrong and teaches readers what they can do to make sure their IEP meetings go right—every time!

When the School Says No, How to Get the Yes!: Securing Special Education Services for Your Child
by Dr. Vaughn K. Lauer

Packed full of stories from parents, advocates, and school staff, this book lays out a structured, collaborative process that IEP teams can follow to determine what a child needs and how to provide services that meet those needs each and every time.

*Please note: One of the contributing stories is mine. I also edited the book. I am biased, but I do not profit from your purchase.

Short Notice

  • Posted on October 28, 2013 at 10:00 AM

I got a call last week. I received the message on Wednesday. It was a request to have Will’s IEP on Thursday. I was too busy to call back, which meant I was way too busy to attend an IEP meeting with a single day’s notice.

Today, I have Alex’s IEP. It was scheduled back when we were having an FBA meeting. Today, I also called to schedule Will’s IEP. It won’t be for tomorrow. I’m not sure when it will be. I had to leave a message.

My co-author, Vaughn K. Lauer, told me that, legally speaking, they’re supposed to give 10 days’ notice. That sounds fair. One day’s notice is not the least bit fair.

There are reasons for urgent meetings, of course. But an IEP meeting shouldn’t be urgently scheduled because the deadline is coming up. It should be a carefully planned process. Everyone should have time to prepare. That means you and me get time to prepare, too. Parents are a vital part of the IEP team.

Don’t let the school push you into an urgent meeting. You have time. Give yourself time to prepare. You’ll need it!

Meeting Results

  • Posted on October 16, 2013 at 8:00 PM

The meeting was a success! There, I saved you some suspense. Now, let’s take a look at what made the meeting a success.

Unlike a typical IEP meeting, we didn’t spend a lot of time going over what we knew. We met, conversed cordially until everyone got there, and then dug right into the new data. The school psychologist was the one to collect the new data. I worked with a different psychologist with Willy, but this was someone new, someone not familiar with Alex and his interactions.

The pinching that she observed was consistent with the normal behaviors we’d seen before. In other words, Alex didn’t attack anyone, which is what he’d done to start this process. So, for the first part of the meeting we concentrated on strategies to address these typical behaviors with the hope of extinguishing them.

In other words, we followed the data we had and came up with solutions using that data to:

  1. Determine the additional data we needed.
  2. Use what we currently knew to re-address our strategies.

After listening to the input from a variety of the specialists present at the meeting, a new approach became clear in my mind:

  • We know that Alex engages in pinching at times of apparent disorder.
  • We know that Alex tends to target certain individuals and we speculate that this targeting is due to the specific, predictable responses he receives.
  • We also know that Alex needs copious amounts of positive sensory stimulation to stay regulated and that Alex responds negatively to normal classroom sensory stimulation (different sensory stimuli in each case).
  • We know that Alex now receives positive sensory stimulation in response to pinching and we speculate that this has reinforced the pinching behavior.

From this, we concluded that Alex craves more predictability than he is currently being provided with and that we could provide this predictability by increasing the structure in his school day. We also recognized that Alex’s attention span doesn’t last a full hour, so the structure we add needs to be a shorter cycle than the typical way the school segments time. We also wanted to provide Alex with more consistency, sufficient positive sensory stimulation, modeling of appropriate behaviors, and opportunities to improve his communication skills.

A two-fold approach resulted from these conclusions:

  1. We would create a repeating cycle of predictable events that Alex can rely on. The cycle will be flexible, both progressively and functionally. This means that the same cycle will be used throughout the day, regardless of what the academic or therapeutic expectations are. It also means that the cycle will expand and contract according to Alex’s needs. For example, he’ll have shorter periods of sensory stimulation and longer periods of academic work as needed.
  2. Staff schedules will be managed to provide Alex with consistent adult support, so that the same people will be made available to Alex from day to day.

These two approaches answered the question, “How are we going to provide what Alex needs while we shape the behaviors we want to see.”

These conclusions updated the behavioral intervention plan that we had been using to better meet Alex’s current needs. There was a celebratory atmosphere for a moment. We were confident and enthusiastic about our new solutions. But it seemed premature to me. We still needed a third component to break the current pattern, and we needed it to be something that could address the more extreme situations, should they reoccur, like the one that made this meeting so urgent.

The vice principal had been silent throughout the meeting. He was there as an authority of the school’s and he hadn’t contributed yet. It was at this moment, when we had determined two of the three components I felt were necessary, that he spoke up to remind everyone why we were here. His voice was like a dash of cold water on the team.

I wish I could quote him, because he spoke very well. He approved of our strategies, but reminded us that Alex lived in a larger environment that included people who would not be as understanding or appreciative of Alex’s unique needs. After the severity of the last incident and previous relatively minor incidents where Alex sought out strangers to pinch, his concern was that there could be potential blow-back and that the school had to demonstrate a level of responsiveness to this aggressive behavior that had not yet been addressed.

In short, he was the authority person reminding us of the big picture. At the same time, he asserted himself as a member of the team, as well, by reinforcing that he, personally, was sympathetic and appreciative of Alex. He also said something that suggested he is also the parent of a child with autism. The cumulative result was that, while he was supportive of the work we’d just done, he has a responsibility to ensure the safety and welfare of those Alex might hurt.

I respected his approach. He handled the situation well and successfully got us on a track that made it possible to address the serious concern that brought us to this meeting, even though we didn’t have any new data to use. Everyone seemed somewhat at a loss on how to go from here. Alex doesn’t really respond to traditional disciplinary action. Nobody really wanted the consequence to be Alex being sent home, both because it’s ineffective as a consequence (more of a reward than a punishment) and because it deprives Alex of school time for something he really doesn’t (to our knowledge) understand.

It was a difficult situation. It took me a while to express what I was thinking. As parents, we’d tried so many different discipline techniques and nothing had worked. Well, almost nothing. The one thing that had worked wasn’t something we really used on a regular basis. I tried it awhile back. It wasn’t planned. It was simply necessary. Occasionally, I would use it again when the situation warranted. Attacking someone for no apparent reason we could recognize seemed to warrant it.

Alex likes cars, especially when they are moving. When he was younger, he would walk out into the street to take a closer look if we didn’t catch him first. One time, I got to him just short of the street, took him back to the porch, and sat him down on our steps. With “hard hands,” I put his arms down and made him sit, watching the cars from the safety of the porch. It wasn’t so much a form of restraint as it was firm, authoritative physical contact. When he tried to get up, I said, “No. Stop. Danger.” Short, simple words that I knew he could understand. My face was stern. My voice was firm. It was the closest thing to discipline that ever worked with Alex. And I described it to them in as much detail as I could.

Together, we discussed ways to implement this technique in the classroom. What it would look like (like a time-out within the environment), what Alex’s response would be (yes, he would get angry), and what the result would be (Alex would calm down and would recognize that he had been stopped). We spent time discussing how it would work and recognized that it could be implemented right away.

We had the third and final component. That, along with increased data collection, will prepare us to meet again at the end of this month for his IEP. We’ll see how these strategies are working and we will fine-tune them with the new data we’re collecting. We’re optimistic.

Happy Birthday to Me

  • Posted on October 14, 2013 at 10:00 AM

Tomorrow is my birthday. I’m over thirty and under forty, so I’m at an age where I feel anything that doesn’t end in a 0 doesn’t matter. The point isn’t that I’m getting older or just how old I might be. The point is that I get to kick off my birthday with a rather special surprise.

At 8:00 AM I’m going to meet Alex’s team to talk about his heightened aggressive behavior. Sounds fun, doesn’t it?

You see, Alex was sent home on Wednesday and we were asked to keep him home on Thursday. This was a surprise and at first I was quite put out. When I labeled it a suspension, nobody contradicted me, whether that’s what they were intending or not. We’ve been getting notes about an increase in pinching. We’ve been seeing that at home, too. Alex being sent home was related to that.

When I got there to pick up Alex last Wednesday, I discovered that there was a lot more than pinching going on here. For one, he was aggressive enough to really hurt one of the paraprofessionals, leaving instant bruises with more bruises surfacing later. That’s why he was being sent home. Apparently, Alex was also targeting people, too, though we don’t know why.

So, on Friday, when he went back to school, they had an independent observer come in to watch him throughout the day, so we could see if we could figure out what’s going on. Our best guess was “attention seeking” behavior, which would be a kind of breakthrough for Alex, though obviously with a negative spin, i.e. aggression. We’re hoping the observer will see whatever the school people aren’t seeing.

So, Tuesday morning, on my birthday, I get to go in early in the morning and talk about all of this and hopefully come up with a new behavioral intervention plan. I’ll let you know how it all goes in Wednesday’s post.

Pressure to Homeschool

  • Posted on October 4, 2013 at 10:00 AM

Every time something new happens with Ben and his school, somebody brings up homeschooling. Now, don’t get me wrong, I have nothing against other parents choosing to homeschool, nor do I have anything against the choice to homeschool being available.

I do, however, have a problem with others pressuring me and my husband to homeschool our children, Ben in particular. Homeschooling isn’t the solution. Not for us. Ben requires special education services, and we don’t have the training for that. Obviously, we teach him things. But we are not qualified to be his sole or his primary source of scholastic education. Nor are we interested in becoming qualified to be his sole or his primary source of scholastic education.

The school is responsible for educating Ben. The solution to our problem is for the school to meet its obligation. That very well may require others forcing them to meet this obligation. If so, I’m happy to do it and I know how to get help to make that happen.

Pressuring someone to homeschool their child is not appropriate. Homeschooling isn’t for everyone. Homeschooling is definitely not the right fit for my husband. While I may be closer, I’m also the breadwinner of my family. I can’t go to school, go to work, and spend a full day educating my child. Nor should I have to. We have schools for a reason. If there’s a problem, there are also ways to handle the problem that do not include pulling the child from school.

While I was napping…

  • Posted on October 2, 2013 at 10:00 AM

During my last post, I talked about my sleeping challenges. On Thursday, it became a problem, but only because a much bigger problem occurred while I was napping. You see, I stayed up until the wee hours of Thursday morning, slept for a while, got up, got the boys off to school, and then went back to bed to catch a quick nap before I started in on my work for the day.

While I was napping, Ben’s teacher and/or aide tried to take him to the bathroom. I don’t know what he was doing before they left or how they transitioned him, but it didn’t work. He threw a fit on the stairs. He ran into another room. He ran outside. He ran back into another room. He ended taking off all his clothes and his diaper. They couldn’t get him back into his clothes. Eventually, he urinated on the floor. He definitely walked through his urine. Someone claimed he rolled around in it, too.

I’m not sure when the calls started: when they couldn’t get him dressed or after he’d urinated on the floor. But they called the house once. They called my work number once. They might have called the cell, but it was turned to silent and I don’t have voicemail set up. Mark and I were both sleeping and we continued to sleep through these calls. Then, they called my mother at work.

By then, Ben had urinated on the floor. He still wasn’t dressed. She specifically told them to leave him as he was. By the time she got there, Ben was dressed and happy to be escorted out to meet her.

Drawing Rules

  • Posted on September 20, 2013 at 10:00 AM

Will is thrilled to have a class dedicated to drawing. His drawing class has bumped PE as his favorite class of the day. Unfortunately, he’s not really enjoying either math class or his English or physical science classes. (Yes, he has two math classes this year—all year long!)

The real surprise is that he’s not enjoying his computer class either. He has Communications Technology. Last Friday, we got a call to inform us that Will was refusing to log on in class. My first thought was, “How is that he gets away with refusing to log on in class?” I mean, I couldn’t imagine even trying something like that, let alone having gotten away with it in school.

His advisor was recommending he swap out of this elective class in favor of study hall or study skills. I looked at Will and told him that he could do that, but if he did he would never be a video game programmer. I said this under the false assumption that this was a prerequisite of the programming class, because, when I filled out the schedule requirements, there was a prerequisite class to programming. I assumed this was it.

After I said that, though, Mark told me that the advisor told him that Will would still be able to take his programming class next semester. Later, after Will told me he’d decided to stick with this class, I told him what his father had said. “No, Mom, you’re right. I should do this. I’ll do my work.”

We’ll see how that goes. But Mark assured him that if we ever get another call saying Will refused to get on the computer at school, then he wouldn’t be getting on the computer at home either. Will got the message.

More Pinching and More Words and a Lot More Bananas

  • Posted on September 18, 2013 at 10:00 AM

While Alex is the happiest of the three boys to be back in school, his transition has not been without difficulties. His pinching has increased as—at least, it seems so to me—a coping mechanism to deal with the transition. He’s pinching more at home than he was over the summer and he’s pinching at school enough for it to be noted as an increase from the end of last year.

On the other hand, we’re also getting more sporadic words (pronounced better and applicable to the situation). For example, during Alex’s Ready-Set-Go conference, we started in his advisor’s classroom, even though Alex would have very little to do with his advisor. His teacher showed up—the same from last year—and he tolerated us lingering in the new room for a little while. Then, he took his teacher’s hand, gently pulled her toward the door, and said, very clearly, “Now.” So, we went to the room he knew.

We’ve been hearing sporadic words and snippets from videos or songs in other venues, too. But we’ve seen this before. This time I’m hoping the words will last and the pinching won’t.

In other developments, we were visiting with my grandfather over the weekend over at my mom’s house. As expected, Alex ate spaghetti without sauce or meatballs. Unexpectedly, Alex also ate two bananas. Alex has eaten bananas in the past, but it’s been a long time since he ate them for us. Moreover, has passed over the angel food cake, which used to be a favorite. I got more bananas for my mom Sunday night, so my grandpa could have his banana in the morning. I also got six bananas for our house. I had one. Alex ate the rest Monday morning. So, I’m going to have to get some more!

Maps and a Big Toe

  • Posted on September 16, 2013 at 10:00 AM

The first day of school was a full day for Willy, but his little brothers only had to attend a Ready-Set-Go conference. When I took Ben to his conference, he was really excited to be out with Mama all by himself—until we arrived at his school. His enthusiasm plummeted and he plodded his way to the door.

After picking up on the body language, I tried to get him to communicate his feelings, asking him, “Is school good or bad?” All he would say for me was “school” in a ho-hum sort of voice.

He explored his new-but-familiar classroom—the same classroom he started the last year in—and silently sat at his desk drawing with a highlighter. His new-but-familiar teacher talked to me about what she already knew about Ben, with the speech and occupational therapists adding in their own comments. The new teacher showed off the things she’d set up for him, including a basic map of the world with each continent in a bright primary color, because “I know Ben loves maps.”

Meanwhile, Ben ignored their greetings and their attempts to engage him. Finally, I crouched down next to his desk and said, “Ben, what’s that?” He looked up, saw where my finger was pointing, and clearly and accurately said, “North America.” Then, he looked back down at his drawing.

“What’s that?” He looked up. “Europe.” Again, he said this clearly and accurately. I could feel the excited hum behind me. The teacher and therapists were watching. “What’s that?” “Asia.” “What’s that?” “Africa.” “What’s that?” “Australia.” “What’s that?” “Pacific Ocean.” “What’s that?” “Atlantic Ocean.” “What’s that?” “Indian Ocean.”

The people behind me were bubbling with excitement.

Ben took my finger, as if to say, “Mom, you missed one,” and placed it on one of the bright continents. “What’s that,” I asked. “South America.” I pulled back, but Ben wasn’t done. He took my finger again and he said, “What’s that?” “Antarctica,” I said, very slowly and clearly. Then, he copied me, “Ant-ark-tick-ah.” Then, since there was one left, I put my finger on the last label on the map, “Artic Ocean.” “Ark-tick Ocean.”

This time I stepped back and the teacher took my place, opening up one of the books she’d picked out for Ben that had much more detailed maps in it. My point was made.

The next week went pretty well. Then, one morning last week, I noticed Ben’s toe nails were rather long. I figured it could wait, since the bus could come any moment. But when he was in his shoes, he was limping a little. So, since the bus hadn’t come, I took off his sock and shoe and cut the nails on that foot. His foot and toes all looked fine, aside from the long nails. I put the sock and shoe on again.

Then, since the bus still hadn’t come, I took off the other sock and shoe and cut those nails. Again, his feet looked fine. I put the sock and shoe back on and noticed that he still favored one of his feet. Walking out to the bus, the limp seemed more pronounced. I figured his foot must feel funny now that the nails were cut. That wasn’t unusual for my boys.

When I got home, though, Mark told me to look at Ben’s foot. The toe nail on Ben’s big toe on his right foot was deeply bruised and the knuckle was swollen. It looked like it was broken. His limp was much more pronounced, too. But how? How could he have hurt his toe so thoroughly when I was right there watching him the whole time and nothing the least bit untoward had happened?

Maybe he stubbed it, I thought and left it go at that for the night. After all, aside from the limp, there were no signs of pain. He didn’t cry. He didn’t rub it. He didn’t seem to care too much at all. But in the morning it seemed worse, not better. I sent him to school and he limped throughout the day.

Well, I thought, maybe it is broken. But, aside from the limp, he didn’t seem bothered by it. So, I scheduled an appointment for the following morning. Ben got a half day off of school and three x-rays to determine that while it very well could have been broken, there was no break and it was just a bad strain. On with his socks, on with his shoes, and back to school.

Now, it seems to be healing quite well and there’s barely a limp at all. I’m not sure whether to feel vindicated that I waited to take him to the doctor or vindicated that I took time off from Ben’s class time to take him to the doctor or both. But I sure do know Ben likes maps!