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The Long Weekend

  • Posted on November 28, 2014 at 10:00 AM

Now that the holiday is out the way, the boys are eager to enjoy their long weekend. There was a time not so very long ago that the disruption such a change represents would be traumatic. I remember times when each boy (though never all at once) would begin any long weekend by getting ready for school, as best as he could, all by himself as a sign of defiance, if you will, against the change in schedule.

Sometimes that simply meant putting on his backpack. Other times it meant getting dressed, including snow pants, boots and a winter coat, all by himself. I would coax, explain, and coax some more. Finally, I’d leave him be until he gave up on school and decided to play. One time Alex went around in coat, shoes, and backpack until well into the afternoon. Every time the front door opened, he’d go see if his bus had finally come. Eventually, though, they always gave up.

Things are very different now. Even though children with autism do not follow the developmental trajectory of their typically developing peers, they do develop—at their own pace, in their own time, and most definitely in their own ways. Now, the boys enjoy the long weekend. They’re perfectly happy to play all day long. So, that’s what they’ll be doing today and for the next two days. Still, they’ll be happy to return to school and their normal routines until the Winter Break comes.

The First Day

  • Posted on September 3, 2014 at 10:00 AM

The boys are at school for their first full day of school today. This is the first full day of the new school year. It’s the start of new things:

  • Learning new things in new classes,
  • Attending class with new students and (for Willy, at least) new teachers,
  • Meeting (or not) new expectations, and
  • Aligning to new routines and new patterns.

Even though some of all this newness is actually the same as last year, it’s still new because there has been such a significant break between the end of last year and the beginning of this year. Furthermore, all three boys have made substantial growth in non-academic areas over the course of the summer, so they’re like new people heading into what may be an old environment.

After the rush of activity to buy new materials, new shoes, and new clothes for the start of this school year, I’m ready for the boys to go to school. I’m ready for the quiet and the relative inactivity. I’m ready to get back to my studies and get back to work. I’m ready to adjust that I may get back into the “normal” pattern of things. Whether it’s normal to human nature or not, the school year makes up the bulk of our yearly time, so it’s the “normal” we experience the most.

As ready as I am for the boys to be back in school, I still feel the loss of the moment and I still feel an overwhelming wave of anxiety for my children. I close my eyes and bring up all the words I have about all my children and fill the darkness of my pictureless minds with all their wonderful attributes. I silently pray, “Let this be a good day. Let the people of their new world see them for the wonderful people they are and appreciate them for all of who they are.” I hold each child in my mind for a moment. Then, I get back to work. I have a full day of work and studying to fit into this brief period away from my children. I have adjustments of my own to make to this new pattern of things. It’s a “first day” for me and for Mark, too.

You’ll Be Happy to Know

  • Posted on August 27, 2014 at 9:29 PM

I didn’t fall off the face of the earth. I just got extremely busy between getting ready to start my school, getting the boys ready to start their school, and working for clients. With any luck, my regularly scheduled programming will return next week, but if that doesn’t happen please know it’s because next week is the first week of school.

Good luck to everyone on all their own endeavors!

School-Year Anxiety

  • Posted on August 8, 2014 at 10:00 AM

After the muddled end of my last school year, I admit I’m anxious about starting up school again. I still haven’t quite gotten a handle on my fibromyalgia. My business is growing, but it’s growing primarily in a way that involves me doing more work to make it grow, as well as the work I need to do to provide for my family. I’m not up to a full day’s worth of work, quantity wise, even though it takes me a full day (or longer) to do it. I’m not sure how I’ll strike a balance between work and school once it starts, since both are priorities. There is so much that is unknown and I feel so unprepared, that there’s definitely an anxiety factor involved.

Willy, on the other hand, seems willfully unaware that school will start in less than a month. He will acknowledge it if I bring the issue up directly. He’ll discuss what concessions he’s willing to make with regards to new clothes, new school supplies, new shoes, and a new backpack. He’s willing to talk, briefly, about how he felt last year went. He won’t talk directly about his hopes and fears about the coming year. It’s difficult to weigh his anxiety levels, because he asserts a blasé attitude that seemingly belies his willfulness on the matter.

Alex, of course, is impossible to gauge. Honestly, I think getting back to the routine of school will be good for him. We have had something of a routine this summer, which has helped; but it’s a routine that spreads across the week, not over a single day, and it’s subject to far more change than the routines of school. This is not to say that he isn’t experiencing anxiety over the start of school. It’s more to say that it’s difficult to judge that anxiety relative to the buzz of anxiety he seems to feel most of the time. There are times when he’s completely free and, by noting those times and repeating the surrounding circumstances, we’ve even been able to increase them. However, the onset of anxiety is never so easily pinned to one cause or another, because he can experience both instantaneous and delayed reactions, depending on his processing during the moment. He seems to be handling the idea of returning to school well, but it’s hard to tell.

Ben is another matter. He seems genuinely unaware of the imminence of school. If I bring it up, his behavior reflects a belief that what I’m saying is not interesting, and therefore not worth attending to. This doesn’t necessarily suggest a blasé attitude similar to Will’s, because Ben’s hyper-focus can be very difficult to break through, even if you attempt to do so with something immediate, tangible, and desired. Ben has very much been “in his own world” this summer. He’ll zone into something desired and prolong it as long as possible. The easiest way to break him out of it (not that we do this on purpose or anything) is to give Alex the opportunity to do something he likes to do that annoys Ben. Ben will stop whatever he’s doing, wherever he’s doing it (as long as they’re both in the same house) and try to make Alex stop. If Ben cares one way or the other about the start of school, then he’s not saying so. I suspect he’ll care once he has to go back to focusing on tasks and timetables that other people set for him.

Of course, Mark is the stay-at-home parent who is not going to school, so the start of school means something different to him. I remember what that was like and, if he’s anything like me, he’s looking forward to the relief. After all, he’s borne the brunt of a difficult summer. He’s definitely ready for a break! And he definitely deserves it!

Time to Shop

  • Posted on August 6, 2014 at 10:00 AM

As those of you with school-age children will know, it’s time to do the before-school shopping, where you get all the school supplies the school says your child will need for the year, as well as a closet-full of new school clothes (if you can afford that sort of thing). In a household with children with autism, this ritual is modified. While the modifications depend entirely on the child, here are a few things that might occur:

  • Your child does NOT want new clothes—no matter how cool they happen to be. Even new socks and/or underwear can ramp up the before-school anxiety.
  • Your child does NOT want a new backpack—even if the old one is falling apart and held together with duct tape.
  • If your child MUST have a new backpack, then it MUST be the same style, size, and color as the backpack that is being replaced.
  • If your child MUST have new clothes, then the outfits should emphasize comfort and should not be stress-inducing or exciting; whether the clothes are “cool” or not may not matter to your child.
  • Your child may require a set of “school” supplies for home, as well as for school, because paper, pens, pencils and crayons are always welcome. Your child might “break into” his or her school supplies if a set of the most desirable items is not purchase for immediate, at-home use. This can also reduce anxiety about going back to school.
  • Your child does NOT want a new pair of shoes—even if his or her shoes are too small or have holes in the toes and in the soles.
  • If your child MUST have new clothes/shoes, then they should be as adaptable as possible, meaning that it is ill advised to get a new summer set and then, later, a new fall set. If possible, get a new set that will be adaptable until the next growth spurt, adding new items as the seasons change.
  • Your child may have absolutely no interest in going shopping with you; the added stress of shopping on top of the near-constant back-to-school stress may be too much for your child to bear. If your child says, “No” in any way, shape or form, honor that choice if at all possible.
  • If your child MUST go shopping with you, please respect your child enough not to drag him or her to multiple stores in pursuit of the best deals—the cost savings is not worth the stress this will cause your child. If possible, avoid peak shopping times.

For many children with autism, going back to school is stressful enough. For many children with autism, going shopping is stressful enough. Combining the two is a disaster waiting to happen. Please honor and respect your child’s needs during this stressful, anxiety-ridden time.

The Right Decision Done Right

  • Posted on February 14, 2014 at 10:00 AM

Ben’s IEP meeting went better than expected, just as I hoped. When I invited the gentlemen from the Richardson School, I informed Ben’s teacher that I was doing so. I knew the school’s reaction would be to have someone with especial authority from the district attend as well, and that’s what I wanted to see. It wasn’t a manipulation, I assure you. I genuinely wanted the gentlemen to attend and I genuinely wanted their input. I knew, however, that the IEP team would need more authority than usual in order to make a truly effective placement decision. So, the extra authority was necessary and welcome, even if other parents might feel the district was stacking the deck against them.

You see, I wasn’t going into the meeting with the intention of “winning” what I wanted from the district. If I learned anything from editing Vaughn’s book, it’s this: What I want isn’t important, what the school district wants to provide isn’t important, the only thing that’s truly important is what the child needs. Getting Ben what he needed was my only goal.

They opened the meeting by telling me their objectives: determining whether Ben continued to qualify for special education services (he does); reviewing past progress (which we did); and setting his goals for the next year (which we also did). They then asked me what my concerns were, since it was obvious that I had at least one. I told them that my main concern was regarding Ben’s academic progress compared to state standards and his placement.

I was then given the opportunity to address these concerns and basically build a platform that would be addressed throughout the meeting. I explained that, as I saw it, Ben had reached the point where he was especially open to learning. My fear, then, was that if this window of opportunity wasn’t taken advantage of, he’d grow frustrated and the window would close. I knew that was a real possibility, because that’s what seems to have happened with Alex; which is not to say there will never be another window, but that it is an opportunity too precious to miss. My goal was to make sure Ben was placed in an environment where this window would be taken advantage of, where he’d learn and be challenged.

We talked about the progress Ben has made so far this year. As it turned out, he was making a lot more progress with social skills and language than had previously been reported to me. He was no longer spending his entire day in an isolated environment. He would have visitors and he would go around visiting, using practical language skills throughout the day. He had also made significant academic progress and his goals were either attained or emerging. As I put it, Ben tends to get stuck on a frequency. If the adults around him can tune into his frequency, they can access what he’s really capable of and help him develop that. His new teacher can!

It was great to hear. As the meeting progressed and the accomplishments piled up, I knew that we wouldn’t be changing Ben’s placement. I wasn’t disappointed the way a few seemed to expect. The point was not to get Ben “where I wanted him to be,” but to make sure Ben got to be where he needed to be. With the new teacher, he was right where he needed to be!

We talked about past goals, we talked about new goals, we talked about formal testing and accommodations and upcoming changes to state testing instruments. We talked about Ben’s services and what he needed to achieve his goals. There was a lot of excitement in the room, because Ben was doing quite well, and there was no hostility.

Then, we started talking about placement. I made it clear (directing my comments to the senior district representative) that this discussion shouldn’t be about what the district had available (she nodded) or about what I wanted (she nodded again), but that the decision was supposed to be based on what’s best for Ben (she nodded and smiled). I described briefly how the decision to transfer Ben from Kennedy to Wilson was made, how the decision was presented to me as “It’s either Kennedy or Wilson and Kennedy doesn’t work, so it’s Wilson.”

At this point, someone from Wilson broke in and asserted how much Wilson had done for Ben, basically defending the school. The hostility was suddenly palpable, and it was obvious to the right people that the hostility wasn’t coming from me. So, when I had a chance to speak again, I reiterated my point that this wasn’t about Wilson, but about making sure Ben was placed where he needed to be to take advantage of the open window. I made it clear that I wasn’t “against” Wilson and that I definitely recognized the teacher’s skill and connection with Ben. My point was that, for Ben’s best interests, we needed to have an open, honest discussion about where Ben needed to be, knowing there were real options (like the Richardson School), instead of anyone telling me there was only one choice.

That’s exactly the kind of discussion we had. And, in the end, considering the dramatic progress Ben is making, we decided—as a team—that Ben would stay at Wilson. The people from the Richardson school even said, “You’ve got a great team here and while, a year ago, yeah, Richardson might have been the right place for him, but he’s already making the kind of progress we like to see in our students.” I agreed. The point, however, was this time around it was a team decision made with real options, which is what it’s supposed to be.

I can handle the hostility. I’m especially glad I’m not the only one who saw it—I was looking at the senior district person when the person in question started her “defense” and her face was sufficiently expressive considering I was looking for her reaction. Hopefully things will improve in that quarter now, too!

Waves of Cold

  • Posted on January 27, 2014 at 10:00 PM

The first time it came, they called it a “polar vortex” and canceled school for two days due to extreme cold. The second time it came, a meteorologist on the news feeds explained what a polar vortex was, why the second one wasn’t one, and why some of the dire reactions to “polar vortex” were wrong. School wasn’t closed, but it was still pretty cold. This time nobody seems to be talking about polar vortexes, but the extreme cold is here and school is again canceled for two days (at least).

These waves of cold are disruptive. The outdoors is dangerously cold, so along with school we’ve canceled any other appointments we have. Instead, we hunker down in our home, where it’s warm and safe. The boys go about their business as if it’s a continuation of the weekend and take the disruption in stride.

This is relatively new. When I was a child, I always celebrate snow days as an unexpected reprieve from school. It wasn’t that I disliked school—at least, most of the time I didn’t. I liked learning well enough and could, usually, tolerate the socialization problems I had at school well enough. But snow days were unexpected holidays. They were like sick days, except without the being sick part, which made them all the more precious. Whether I was bundled up to play outside (which wouldn’t happen in this kind of weather) or cuddled in a chair with a good book, I enjoyed the extra free time.

For years, my children had a very different response to snow days. Whether school was going well or not, they wanted to be there because that’s where they were “supposed” to be. If school was canceled without foreshadowing, well that was unacceptable. Especially, as happened occasionally, if I got them ready for school before I learned that the buses wouldn’t be coming—that was excruciating for everyone involved, namely the boys and I.

Now, they just adapt. They deal with it. They don’t long for snow days the way most kids do, but they tolerate them well enough. I’ll take that!

The Richardson School

  • Posted on January 22, 2014 at 10:00 AM

On Monday, I took a tour of the new school for students with special needs that opened in my local area this year. I was greeted by the man who runs the school and taken into a meeting with the supervisor who works with this school and its sister school. We had an intense talk about Alex and Ben, what I was looking for, and how this school might meet their needs. Then, we took a look around.

The school was significantly smaller and quieter than I expected. There are only eight students and they only lease enough space to meet their current needs. They are housed in a full size school, but only use a portion of it. They will lease additional space as they need it, as their student population grows. The quietness was even more unexpected. Some of the students weren’t in school, because some districts honor Martin Luther King Jr. Day with a day off from school while others don’t, but even so the school was exceptionally quiet. While peeking in the classrooms, I saw that the kids were on task. They were attending, focused on their work.

As I toured the school, one of the most promising things I saw was the art room. If my boys attend this school, they will have art class twice a week, and could use additional art time as break time. The art teacher is actually an art therapist as well. Considering my boys’ inclination for art and their lack of opportunities to develop those interests in their current environment, this was an especially welcome sign.

Another plus was the emphasis on actual education. This school is committed to the Common Core State Standards, which is something all schools are supposed to target, but seems lacking in their current environments. So, it’s possible that Alex and Ben would be able to catch up to where they’re supposed to be if they attended this school. That would become clearer after the school staff assessed the boys. Though, one thing I really liked was their flexibility. They said that if they assessed a child and found, after a month at the school, that the child had a lot more potential than they thought, they could adjust easily to meet the child’s needs.

I was looking at this school to see if it might be a better environment for my children. After visiting this school, I think it may be just what they need. I have IEPs coming up for both of them. Wanting doesn’t make it happen, though, so we’ll just have to see how this plays out.

Embracing the Challenge

  • Posted on January 20, 2014 at 10:00 AM

A new school in my area is dedicated to providing children with special needs with a positive environment, as well as the educational and support services they need. It seems odd that I’m actually considering this, because, years ago, I was committed to ensuring all of my children had the benefits of an inclusive educational environment. Unfortunately, in this school district, that goal was unattainable.

Alex and Ben have both been placed in segregated school environments since they entered elementary school, where they have minimal interactions with regular education peers. They have primarily attended school in what is called a “CD” or cognitively disabled classroom—a classroom positioned “off to the side” of the regular classrooms that is designed specifically for children with more severe special needs. More recently, Ben has been pulled out of even this environment and placed in an even more isolated classroom due to his behaviors.

According to the principle of “least restrictive environment,” the ideal situation for both boys is an environment that provides them with the educational and support services they need in an environment that places the “least restrictions” on them. Now that a new environment is available, I’m beginning to suspect that the least restrictive environment will be a school committed to their needs, instead of a room segregated from their peers.

Today I will visit this new school and see the environment for myself. If I like what I see, I’m going to take a serious look at what is being provided for my children versus what could be provided for them. If the new environment is indeed a better environment for their education, then that will become a new goal. The idea isn’t, however, to have them “placed” somewhere specific, but to have their needs met in a way in a better, more successful way. Of course, I’m already meeting with resistance to the idea, but I’m up to the challenge!

Testing Questions

  • Posted on November 11, 2013 at 10:00 AM

We don’t have a deadline, but we have a plan. Vaughn and I are writing a book about tests used in special education. If you read it, when it’s done, it will help you understand the various tests used to qualify a child for services and to help determine goals and objectives for those services. And, perhaps most importantly, which is which.

Is there a particular test you would like to learn more about?  Is there something about testing that you don't understand?  Provide feedback now and we'll do our utmost best to meet your needs!