Inspired partially by this story:

This topic has been a bit of a mindworm for me for several weeks, ever since we visited the church of my father-in-law while on vacation. And again this week, while a local church is having vacation Bible school (VBS).

Churches and houses of worship are pretty central to the community life of a lot of people, especially families. It is often considered an extended part of the family where friends are made and met. Churches provide a valuable source of social interaction that can be less pressured than the formal structure of school.

Or is it?

It’s difficult for me to think of a place where a meltdown is less welcome than at church. At school, in stores and parks tantrums are pretty common amongst all children. They also happen at church, but for some reason they inspire a level of shock and horror of Biblical proportions. People can and will complain, gossip and talk about a child’s behavior. When it comes to support, church can definitely be a mixed bag.

Some of the earliest indications of troubles for Thomas were evident in church. When he was in the nursery, it seemed like Jane was always getting called down there to tend to some sort of mishap. We moved to another community when he was 18 months old, and this church’s nursey had a beeper system. Parents would get a vibrating pager and if there was a problem, we would be paged. And it seems like we got paged alot. All. The. Time. In fact I remember the first Sunday we didn’t get paged. We were nervous and convinced that the batteries had gone dead or that the pager was broken! Thomas was prone to meltdowns in the church setting, crying almost the entire time or to a point where he would throw up. The fact that he was prone to reflux didn’t help matters.

Before he was diagnosed, we thought he was just fussier and more temperamental than other kids. I don’t think other parents were so judgmental in the early days as much as they were thankful this wasn’t their child!

Neurotypical kids often meltdown when they separate from parents, especially when the parents don’t attend very regularly. I remember volunteering for a two year-old nursery one Easter Sunday. 9 little girls, all dressed in their best Sunday Easter dresses cried, screamed and tantrumed for a good 30 minutes before we could redirect them into some play activities. And then it repeated when parents started to pick up their kids, and those left behind thought they were being abandoned. Most of these kids had not been in a church since Christmas or Easter the year before!

But Jane and I were regular attenders. We were there pretty each and every Sunday unless someone was sick. We also were involved in other church activities outside of Sunday mornings. But Sunday mornings were a source of constant anxiety.

First, we had to get there. A lot of families can relate to the struggle involved in getting everyone there on time, without some sort of meltdown. And these are regular, neurotypical intact families! Getting Thomas ready involved extra time as he does not do well when he’s rushed. And it seems like we were always rushed.

Then we would drop him off to his Sunday school class, while we went to our adult Sunday school class, which I sometimes taught. But invariably, the beeper would go off, and usually it was Jane who would have to see what the problem was. It got to the point where Jane just quit going to our adult Sunday school class and stayed with Thomas in his class. The anxiety of waiting for the pager to go off was just too much.

After Sunday school, we went to the worship service. At 3, Thomas was too big for the nursery, and attended with us. This posed a big challenge as he often wanted to “talk” and make noise at exactly the wrong time, which was during the pastoral prayer. Keep in mind, this prayer and the sermon were often taped and broadcast over the radio the next week. I remember actually being able to hear him while listening several times! Then there is the business of staying in your place and following the liturgy which involves standing up and sitting down at certain times. Outside of school, church is often the most structured place a child attends, but unlike school, the rules are not so explicit. However, there is a decent level of consistency in the service they he eventually started catching on to.

Midway through the service, before the sermon, the kids up through 3rd grade go to children’s church. So the big task was getting him through the children’s sermon, which segued into the kids leaving to go to children’s church.

Getting through to that point often involved bringing candy and snacks. This was actually pretty successful as long as they didn’t give him too much during Sunday school. As long as he was munching away, he seemed fairly content. Mixing the snacks up also helped slow him down as he would first get the peanuts, then raisins and finally the cheerios. Otherwise, he would finish the snack before the pastoral prayer, and then we were in trouble.

The children’s sermon took place in the front of the alter, where all the kids would gather around the person delivering the short message. Sometimes it was the pastor or assistant pastor but sometimes it was someone else from the congregation. Since we sat in the back in the balcony (an attempt to keep from being too much of a distraction) it took extra time for Thomas to get up front. Either Jane or I would have to go with him him and then try to keep him contained during the short children’s sermon. More than once he got away from us and would walk around the sanctuary, much to the amusement of the congregation but mostly to my own horror. He really never got into the children’s message and pretty much had to be forced to stay in his spot. And then it was time for him to go to children’s church.

Children’s church was not as structured as Sunday school. The kids were often wilder and more unruly and the people who volunteered for this were not always very well prepared. The chaos and noise didn’t sit well with Thomas, so either Jane or I would have to go with him and stay.

The end result was that we (but mostly Jane) were missing a lot of church. The reason to go there is to participate in a corporate worship experience in order to facilitate a more complete experience of Joy with God. But often for us, it was anything but joyful. It was almost hellish. Jane was seriously whithering on the vine, spiritually. It was stressful pretty much from beginning to end.

An associate pastor saw our plight and started a program where other adults or teenagers would go with Thomas to children’s church. This was called “Angel Buddies.” They even brought in Thomas’ preschool teacher to help answer questions and help them understand how to deal with kids with autism. We had about 7 volunteers at the beginning of this program and it did seem to work out pretty well at first. Jane and I could finally attend church together and it was often the only time we were together without any kids all over us.

But the Angel Buddy program’s success was short-lived. The associate pastor left within the year and the next person who took over the schedule was not very diligent. In fact, Jane or I were included in the rotation every month. We were told this was so that the other helpers wouldn’t get worn out with it. But often, the helpers would be out of town or not at church and we would have to do it anyway. While we were grateful for any assistance we got, we hated to impose on other people. The list of volunteers who were faithful and diligent to this ministry got smaller and smaller as people moved on to other ministries and as teenagers went to college.

I should mention that the few teenagers who volunteered were some of the best and most diligent people in the Angel Buddy program. I think Thomas and they both benefited a lot from being together. But it became less and less of a program and was dwindling away.

In the meantime, people were talking and complaining about Thomas’ behavior. He seemed to choose church as a testing ground for defiance. One of the only times he was ever spanked was outside in the church parking lot. And the side effects from that weren’t exactly desirable. Jane and I were not together during church time, and one or both of us were not among other adults. It was a source of stress and conflict with each other and within the church community.

One would think that the safest place in the world for children with disabilities would be in houses of worship, among people dedicated to God, love, mercy, grace, compassion, faith, and forgiveness. But this is not true at all. The worship service itself, with constant demands for compliance and conformity, is hostile for those who are inherently different from everyone else. Anyone who is unable to conform to the structures of the service is not welcome and asked to leave. The larger the church, the more true this will be.

I may editorialize more on my feelings toward church and those with disabilities later, but I want to talk a bit about how churches attempt to deal with this unique and growing population. In this particular church spoken about above, they attempted to recruit helpers in order to help Thomas participate in the same activities as his peers. I think the intent of the program was excellent, and it started out well enough. But without diligence by a committed coordinator, it becomes just another chore to dread like ushering, parking lot duty, being a greeter or assorted other mundane tasks and ministries in the church. Yes, we are the boy’s parents and he is our responsibility which we take seriously. But no one was caring much about our own spiritual growth or struggles. Staying home is a more Holy, peaceful and rejuvenating experience for many families that have children with disabilities. Church is often a hostile, hellish experience where families are segregated or ostracized. I don’t think Jesus would approve.

That’s not to say Thomas got nothing out of it. He did memorize the Lord’s prayer and the Apostle’s Creed. He also picked up on it enough to threaten his Sunday school teachers with crucifixion more than once!

Other churches set up a separate class and program for people with disabilities that is set apart. On one hand this makes it easier to concentrate human volunteers and resources in one area, but it also segregates people with disabilities into a sort of modern-day leper colony.

When we visited my father-in-law’s church, Thomas spent a bit of time during the service just wandering around. I was keen to hold him down or take him out, but Jane tried letting him loose. Talk about anxiety! An usher came up and said something to him, so I retrieved Thomas. The usher said that we could use a back room where we could here the whole service. I decided to try that.

Many churches do have a “cry room” where parents can take crying babies or mothers can actually nurse their babies while being able to see the whole service through one-way glass. This room was actually pretty cool because it had nice comfortable couches and Thomas found some toys to keep him content and occupied. It was like a little living room or a one of those box suites they have in stadiums. The usher even brought him a cookie! I was totally into this until a couple mothers came in and wanted to nurse their babies. So we spent the balance of the service in the large lobby area, just walking around. Last summer, at my parents’ small church he was getting disruptive, so Mom took him out to walk around the block.

Jane and the boys have been going to another church where the structure is a bit different. The kids spend the entire service in their own big area where the have plays, they dance, sing and basically have a big party. The staff have been pretty good with him and have worked so that he feels comfortable there. But he still has his moments. The setting is very, very loud. They probably amp up to over 100 decibels at times, which means he spends a considerable amount of time with his fingers in his ears. The open space, the loud contemporary music and the dancing around are more conducive to Thomas just walking around the room in circles, which he prefers in such settings.

I remember years ago attending a service at a small country church near my parents that they attend sometimes. There wasn’t more than 25 people in the place and people dressed fairly casually. Thomas wasn’t with me, but the was a boy about his age, wandering around the little sanctuary and amongst the people. No one made a big deal about it, as it was a fairly informal setting. Plus, the boy was the pastor’s son so that probably carried some weight. But I never forgot the comfort the boy and other members felt in that place. There a distinctive lack of anxiety or concern there. Basically, it was a bunch of neighbors getting together, and they weren’t too concerned about impressing one another.

It occurs to me that larger congregations and groups are going to have a harder time with people with disabilities. In large groups and institutions, conformity is a big deal. It’s the only way to have any sort of order in these places. But smaller groups may allow for more inclusiveness and flexibility. That’s just my general impression.

This is not an exhaustive treatment of the subject, but I’m just throwing this out there for discussion where maybe others can expand or extend with their own experiences. I’ll be jumping back into school related stuff soon, as us teachers report back this Friday!

D.

]]> http://specialed.wordpress.com/2008/07/23/church-and-kids-with-autism/feed/ special ed http://specialed.wordpress.com/2008/06/30/welcome-advanced-elearn-im-finished-for-summer/ http://specialed.wordpress.com/2008/06/30/welcome-advanced-elearn-im-finished-for-summer/#comments Mon, 30 Jun 2008 18:21:27 +0000 Daniel Dage http://specialed.wordpress.com/2008/06/30/welcome-advanced-elearn-im-finished-for-summer/

I just finished my Advanced Moodle Course (which my county calls Elearn) and did manage to get a decent course laid out that might be useful for the teachers in our county.  You can see most of the content on my TeacherTube or YouTube sites.  If and when I add more content, that will appear on one of those sights. 

I learned a lot by taking this course, since my course is also about teaching adult teachers.  One of the problems with this course about interactive learning is that it is still taught in the traditional 20th century way.  That means you have one teacher in front of 20-30 other people and that one person disseminates the content out to the students.  However, there was a group of teachers that did get together and collaborated on their online course.  However it was tough going for them as they hadn’t actually taken a Moodle course before.  Many Moodle courses still look like they could have been produced years ago, as they involve a ton of reading and then an occasional quiz to measure understanding.  what these courses really and truly need is to incorporate the production of actual content.

This course is being or has been taught by 3 different instructors, and I’m wondering why they didn’t pool their time and resources in developing content for this course.  Each instructor could take a topic or a day (it’s a three day course) and really and truly demonstrate the power of this technology.  For instance, this class had a few other nerds like me, but also had some people who have difficulty managing basic computer functions.  By having recorded content online, it would allow those people who needed to see something multiple times to actually see those instructions multiple times while the faster people could keep progressing or enhancing our own courses/sites.

You can get the gist of what I’m saying by looking at this video.

So I’ll be off and traveling for the next 3 weeks, and we’ll be driving about 3,000 miles!  Fortunately, both of my kids travel really well.  Having an extra mp3 player and laptop/DVD player will make things a little easier.  Stay Cool!

D.

Since school is out, I’ve been having the time of my life, exploring new mediums and modes of expression and teaching. I took over an hour of footage before school let out and am taking some time to edit and post them to TeacherTube. But I’m also connecting within the YouTube community. I’m planning on doing more creative things on YouTube, which means not everything will be as “professional.”

The great thing is watching what other people are doing and how they are doing it. I was talking to an assistant principal awhile back and letting her know some of the things I was doing. “You mean they have educational videos on YouTube?”

Yes, yea they do. In fact, YouTube is a treasure trove of knowledge and information. Yeah, I subscribe to an X-men cartoon channel and Al Yankovic’s “White and Nerdy” video is among my favorites along with the Guacamole Ukulele song. Kind of a theme going on there.

But there is a world of knowledge out there waiting to be discovered. My one subscriber, so far, is Dr. Melvin Koplow aka drmdk. His YouTube channel is here. There’s some good information there, as he got the idea to videotape short interviews with doctors and experts from a variety of fields and disciplines, making medical information available to anyone. The information is fascinating and cutting edge and he is truly on to something. I will warn you that it helps to have a keen interest in the content, as the interviews and videos are a bit on the dry side, but they are also less than 10 minutes long each. And in these videos, especially in the autism section, you can see what the doctors and experts say.

While information and knowledge is power, it’s up to individuals to decide whether or not they want to be ignorant. Hat tip to Liz who found a good article about the costs of unproven and sometimes dangerous treatments for autism. Dr. MDK does cut through much of this with a number of his videos on the subject. In fact, one of the the reasons Dr. MDK started making these videos is linked to Liz’s latest blog entry here. You can see Dr. MDK talking about why he’s making these videos here. He talks about how there are ghostwriters done by people who didn’t even do the work or research. There is something about having a face and a voice attached to the information instead of just a written page.

And that’s part of what I’m doing. I’m putting myself out there, where you can see what I’m doing and who I am with real, actual students. You see who I am. This isn’t just some anonymous blogger anymore. It’s someone more real. Back when I posted my Fleecing article, I initially got a lot of comments from people who agreed with it, but as time wore on, more and more parents started commenting and many of them stated how these controversial therapies had helped or cured their kids.

Where’s the before and after YouTube videos?

I have some that I’m working on, and you can judge for yourself. Before and after videos are one reasonable measure of validity, according to Kazdin’s authoritative work on single-case research designs. But I haven’t seen any. Why isn’t this very simple method used to lend at least a minimum of validity to any of these treatments? Because there is none? That’s not to say that method alone would be sufficient to prove anything as much as support some of the ideas. Yes, YouTube could be a vehicle for helping promote legitimate treatments for autism. You can look and see several videos of kids getting behavioral therapy and track the progress yourself of some of the kids.

There’s good information out there, it’s just a matter of finding it. Or better still, creating it.

D.

In making my course for teachers and paras for students with severe disabilities, I’ve been looking for content related to what we do in the classroom. Today I decided to work on Discrete Trial Teaching (DTT) sometimes also called Discrete Trial Instruction (DTI). Same thing, different name.

I prefer video over text alone, so I went first to TeacherTube, since the school system doesn’t block that site. However, the only video there on the subject is the one I posted. Oh well. YouTube is a better source for videos on anything and a search there was much more fruitful. Here’s one working with a very young child. No matter the age, the same rules always apply. Keep the instruction consistent, reinforce independent responses, and record the responses for data analysis. The YouTube video gives very comprehensive, yet concise instruction on the topic and I’d love to use it.

There is also a series of Lovaas training videos on YouTube which are much more advanced, behaviorally speaking, but the one listed above gives a better overview in a lot less time . Part 1 shows how not to do it in the beginning, which you can see from the comments elicited strong reactions from a few viewers. It’s a bit dated, but you get a good view of a purer form of DTT from the Lovaas people. There are many YouTube videos in a variety of languages worth looking at and these are mostly used for and by parents. Teachers and paras really need to tap into this information, too.

Typing in “ABA” reveals a lot of videos showing it in action, mostly with very young children with autism. DTT is not the same thing as Applied Behavior Analysis (ABA). ABA is more of a global description of a system. It’s sort of like referring to “rain” as “weather.” Yes, rain is weather, but it’s only one aspect of weather and even precipitation. Weather encompasses all manner of meteorological events including wind current, barometric pressure and the jet stream. ABA encompasses a whole lot more topography beyond just DTT, but a lot of people outside the field confuse the two.

I recently put a couple more videos up showing some of what I do with a type of DTT here and here. This is also serving as a sort of tutorial in modeling for para instruction at the same time instructing the student. I probably need to make a more explicit para training video since that is a big issue for most special ed teachers.

I like DTT because it is straightforward, and something that paras can learn and do pretty easily. It can yield some good data and works well with short-term IEP objectives. It is something that is not expensive to set up, and it is accessible to anyone who wants to learn how to do it.

Catherine Maurice’s Behavior Intervention for Young Children remains one of the best and most accessible resources on the subject even though she makes the common mistake of confusing ABA with DTT. Many of these interventions can be used with older students with severe autism and you’ll recognize what we do in the videos compared to what is done with the youngsters. It’s only been within the last 10 years that DTT really took off in the autism community, so students in high school were probably never exposed to this behavioral technology at a younger age.

D.

We are on the downhill slide of the year. One more day. And I still don’t know what I’m going to be doing next year! My evaluator hasn’t darkened my door in over a month (and that wasn’t for an evaluation but a discipline problem) but I did make evaluating me easier than gravity. I gave her a CD of some video I shot doing some teaching and included my data sheet/lesson plan with it. I knew we were going to be crushed at the end and thought she could use that in a pinch. So we’ll see.

What I do know, is that 1/4 of our faculty is departing this year, and one third of those will be from the special education department. It is going to be hideously hard to fill those vacancies, with mine being the absolute hardest to fill. Let’s face it; people are not beating my door down trying to get in. They might try to keep me in this room for another year, which would be stressful but I would do it with the understanding that this would be my last year at this high school. I won’t be screwed over twice. This state of limbo makes it hard to prepare for summer inservice classes as they are offering several co-teaching classes but they want the co-teachers to take the class together. That’s a bit difficult when a large number of those who will be doing the co-teaching are not even hired yet!

So why the big turn-over? For one thing, our principal is leaving. The new principal will be principal #4 for me. Administrators come and go. If you don’t like the one you got, wait a few years and you’ll get a new one. If you like the one you have, enjoy it because the wind will shift directions pretty soon. Fightin’ Joe was an assistant for a few years before taking the head job, and while he was an AP we saw quite a bit of him in my room and with my kids. He even played the role of Santa Clause during a Christmas party we had one year. I know – totally not age appropriate! Once he became the head guy, we rarely ever saw him. And really, that is absolutely fine with me. I know he had bigger fish to fry with AYP (which we made most years he was principal) and while I appreciate any time an administrator spends with us, no news is mostly good news. Administrators traditionally have to spend most of their time putting out fires and the fact that we’ve had relatively few has been a relief to us all.

Another reason we might be seeing higher turnover might have something to do with this Washington Post article. My previous article touched on that theme a bit, and I agree with Steven Rothman that somehow parents are micromanaging their schools to death. My take on it is that parents want to hold the schools responsible for raising their children, and when teachers and schools fail to raise the children (as they most certainly will) parents get upset. They are less concerned about the education their children receive as much as they are about making excuses for their child’s behavior or lack of progress. We live in an age where people can take charge of their own education and learning and yet precious few are actually doing that. They want others to hold their hands and babysit and nag them.

The answer to this is not going to come from us as educators. It has to come from us as parents. I am totally in favor of parents banding together, sharing resources, ideas or even complaining about us as teachers. But too often, these groups become gripe festivals that incite parents to go after the schools in order to demand more and more while offering very little. The autism groups are probably the most notorious offenders of all. I can tell when I have a parent that is being coached by a real life or online group. The adversarial relationship is there from the start, and parents are braced for battle. It’s one thing if the school or teacher has earned it by failing to educate as they are supposed to. But parents will too often wait until the IEP to air every complaint, and instead of an hour-long meeting, we end up there all day. Working things out ahead of time, instead of springing all the demands at once can salvage a lot of good will. Teachers should do this as well, sharing information on a regular basis. As educators, we can minimize a lot of the micromanagement by practicing a certain degree of transparency in what we are doing.

But in the end, it is up to parents to establish the prevailing culture of their neighborhoods and communities. I’m sure many of you know of children in your neighborhood running wild, making a nuisance of themselves, staying out entirely too late on school nights and basically not behaving in a responsible manner. And the parents let them. But I know that the neighbors can have more influence in the form of peer pressure. Peer pressure doesn’t end with high school. In the case of kids with disabilities, you might know of parents who seem to cultivate dependence by doing everything for the child except chew his food for him. Most kids can put on their own coats, use the toilet and eat with a spoon before they go to kindergarten. And yet there’s a group of parents who expect the schools to train the special needs kids to do these things. How do other kids learn this stuff without schools and teachers? This is why the school and parents need to be part of a cooperative partnership.

I’m sure I’ve spouted on long enough on this theme. Later this summer, my family and I will be going on a real vacation and seeing and learning about different areas of the country. It’s going to be better than whatever the school system can offer, but I don’t feel the need to force the public system to provide those kinds of educational experiences and opportunities. We’re doing it as parents, and that’s as it should be.

D.

I have new videos posted on TeacherTube! On one, I began a rant on the onerous IEP process that parents never see, which is all the work that goes into preparing these things. It turned out to be more of a rant on goals and objectives, though. I’m also playing around with Movie Maker effects to make it slightly more interesting.

From the autism walk, you can see CJ singing the National Anthem! I don’t know him that well, but I’ve always looked at CJ as being pretty severe as I’ve never heard him say anything! But seeing is believing, and there he is singing just as well as ever, and pretty much stayed on-key the whole time with no music to help him. Is it true the national anthem is one of the hardest songs to sing? CJ made it look pretty easy!  Plus there is a presentation by Kimberly Rockers where she talked about genetic links to autism.  Yeah, that’s my oldest running around and standing in front!

And then I put something up showing how I use discrete trial with one of my students with severe autism. I have a lot more footage with her, as she had one of her best days ever with me and we broke some new ground right there on video.

But I want to do more than just post updates, as I have some actual thoughts to blog about. And this time it is about parent advocacy. I ended up on the other side of it recently, and it was more traumatic and harrowing than I would ever have anticipated. Part of the reason was that it was very much unanticipated.

If you want to raise the blood pressure of the teacher, waiting until the IEP to spring all sorts of concerns and complaints is one way to do it. But you’re going to pay a price for that tactic, which is some resentment from someone who could be advocating with you. Is it worth it? Sometimes it is, and sometimes it isn’t.

When going through the IEP Process, I advocate the teacher and parent working together hand-in-hand and step-by-step, collaborating on providing the best services for the student. “Best” in a public school is a relative thing. The first, greatest and best teacher for your child is YOU. Not the teacher, the SLP the OT or PT. It is YOU, the parent. No one else has the time that you do with your child. No one else cares as much. No one else has the motivation that you have. No one else has the knowledge you do. No one else has the intimate relationship and attachment that you do. And more often than not, many of these other people you rely on to provide services have their own children to care for and feed. During school time, you want these other people to be effective in helping your child to meet their potential. Meeting potential in the school system nowadays means accessing the regular education curriculum. Math, English, social studies and science are what we’re supposed to be teaching. Communication, mobility and other skills must fit into that general education context. Folding laundry and washing dishes are not part of the general education curriculum. Those days are disappearing. Write your congressperson if you feel differently. I have.

One area of contention I had to endure was Extended School Year or ESY. In my view, given what I said above about the parent being teacher #1, ESY makes less sense when you consider that the person that is going to be delivering services is not necessarily the child’s teacher/therapist. It is also probably not going to be in the same location and it is not going to be following the same schedule as the regular school year. Different setting + different teacher + different schedule + different bus + autism = …..progress?!??!

Think again. A child would do much better to have services done in the home or staying with family for the summer. As it is, it is a recipe for behavior problems all the way around and NOT a recipe for progress. Some people are wild about providing social skills instruction during the summer. I can say from reading the research that the efficacy of even the best social skills programs is suspect, at best. But I see more and more parents advocating for it. So let’s plug in a novel peer group into the equation I just outlined above. You have a sudden, severe series of transitions that will be repeated at the end of the summer when they go back to school. Are you really doing your kids any good? I don’t know. You decide.

When I see this sort of “advocacy” it begins to look more and more like the parent simply wants the school to raise their child for them. It is also the failure to see the reality that school services might be able to make progress but school services are not a cure!

As parents, we didn’t ask to have children with disabilities. We’re sending the best children that we have. I just want to make sure that my children have the same access that other students have to an education. However, I do not rely on the schools to teach my children everything. His mother has really done most of the real grunt work when it comes to his education. And she has done a stellar job of it. I’m realistic enough to understand the limitations of public schools in that they do not have the resources to do everything demanded of them. I believe that parents need to step up and take the responsibility for educating their children. The school system is there, but it is not the main education agent nor should it be. We, as parents, need to step up. And if you are a parent of a child with disabilities, you’re going to have to be twice as diligent. Does that mean being more diligent in getting your child services? No. It means learning how to do the things service providers do, and do them yourself. The best therapy my son ever got was after we were able to watch what the therapist did. We have video of his OT, SLP and PT therapists working with him, and we were able to replicate what PT, OT and speech were doing at the private therapy clinic. The light bulb came on in my mind when I saw my son participate a Georgia State study with Mary Ann Romski, and I saw exactly what the SLPs were doing. In fact, much of her research revolves around training parents how to implement interventions.

I’m a big believer that if parents are given the knowledge and tools, they can be the ones who are making the real and significant contributions to a child’s development. Fighting with the school system simply saps your own resources and energy that you could devote to more meaningful activities.

The experience of being rolled over was an exercise in humility. I’m not as good as I thought I was. I am not a special ed. wizard. I’m one person, trying to do the best I can within my own limitations and I have a lot of those. I’m not able to cure anyone, and I’m sorry if I gave the impression that I could. I’ve come to realize that the best I can do is to extend the hard work parents have already put into raising their kids, not the other way around. Nowadays, people often talk of parents needing to support their schools and teachers, which I think is backwards. The parents are the primary educational agents in the lives of their children, and the school plays a supportive and augmentative role. I’ve been around enough to see what happens when family support at home breaks down. Performance at school also slips and behaviors worsen and little learning takes place. So teachers and parents need to be supportive of each other.

So when you are advocating, just what exactly is your expected outcome? If it’s a cure, you’re going to be frustrated pretty much all the time. If it’s for everything you want, you’re going to be frustrated all the time because even when you think you’ve gotten it all, there’s going to be a missing piece. Perhaps you get the para support but the para is untrained and lazy. Or perhaps you get an untrained teacher. Training these folks takes time. Are they going to spend school time getting the training? That’s less time with your child. Is it over the summer? Oh wait…you want them to do ESY! You’re going to have to break in and break countless teachers, paras, therapists and administrators as you fight and battle your way through your child’s school years. Because I have seen more than one teacher move on to another setting rather than continue battling a contentious parent, especially with the prospect of having to be locked in battle for years in the self-contained setting. Let’s face it, I am not up to the task of fighting with the parent of a 16 year-old until that child is 22. Quite frankly, some of you are bent on being angry and frustrated and seem to be conditioned to making everyone else scared, angry and frustrated.

As a parent I have had skirmishes with teachers on a few occasions, usually when the teacher wants to put the child in an overly restrictive environment when they have no data to substantiate such a placement. Basically, if the school starts making noises about putting my child in a self-contained setting, they need to show me something more than just an opinion. Sometimes a parent wants to try a less restrictive setting, and I admit I get nervous about that with my students whose functioning is measured in months. There’s the whole fear that they’ll be victimized by some of the street-wise kids. But you want to try, go ahead and try. Perhaps it will work. I’ve seen good things happen when severe kids are around those less severe. But transitions can be rough.

I’m interested in hearing/reading stories from parents whose advocacy has helped turn a situation around. Perhaps you managed to turn a bad teacher into a good one? Or maybe you’ve battled for years and finally got everything you wanted and it turned out the way you wanted. I have heard of parents who battled until they eventually got a teacher they wanted. I’ve been on both sides of that one, as a parent getting good teachers and as THE teacher some parents wanted.

But I am not all that, as either a parent or teacher. No super teacher/parent here. I can write about it better than I can actually do it! In fact, this is not as much me choosing this life as it is the life that has chosen me!

D.

]]> http://specialed.wordpress.com/2008/05/20/a-word-or-two-about-parent-advocacy/feed/ special ed http://specialed.wordpress.com/2008/05/17/catching-up/ http://specialed.wordpress.com/2008/05/17/catching-up/#comments Sat, 17 May 2008 20:57:58 +0000 Daniel Dage http://specialed.wordpress.com/?p=270

I’m trying to catch up on a lot of things this weekend.  One of them is rest, as I am currently on the downhill slide of a death march, which involves finishing up all the junk teachers have to do to finish a school year.  We have a ton of last minute IEPs, mostly by teachers who procrastinated too long and are so far behind.  Next week is a 6 day work week for high school teachers as we have graduation on Saturday that we all have to work at.

I’m in the process of getting over a cold, which is largely caused by stress.  I’ve been getting home wellinto the evening every night because of the massive amount of paperwork.  I had one parent in particular who really went after me and I may blog more about that later as it demonstrated how to get what you want while you alienate a teacher who wqs otherwise sympathetic to the cause.  Basically participate in a full-scale ambush.  I’m glad when kids have parents that are good advocates and generally am happy to work with them.  But when an adversarial relationship is insisted upon which does no good except guarantee that I won’t get to see my own kids, then we might have some difficulties.

I’m also working on video, audio and pictures for Covington’s 4th annual Autism Walk!  I got some really good footage, not to mention a nice t-shirt!

Good stuff ahead!

D.

My IEP series has yet to include this as this is my very first crack at this abomination. And as a teacher, it is truly an abomination, compared to the good ‘ole days when all you had to do at the very last meeting was look at goal mastery, write some minutes, pat the child on the head and say “C-YA!” In those days, dismissing a child from school and special education was as easy as gravity.

Not so, anymore. From a 1 page breezy narrative, it is now a 5 page millstone.  You can look at it/download it here.  Ours looks slightly different, but it is just as painful.

The reauthorization of 2004 requires this document in order to facilitate the child’s post-secondary transition and provide some sort of seamlessness with vocational rehab agencies. I have no idea if this is true or not for most students, but I don’t see the usefulness for any of my students. Let’s go through this thing together, shall we? I’m filling this out for the student I have identified in past entries as Spaz who is leaving after over 20 years in the system. I’ve had him for 7 of those years, so for about a third of his life. This should be easy, given our history, right?

Checking off assessments used…

This looks easy enough…check, check, check…

And provide copies of the assessment reports.

Crap. The boy has a folder that takes up an entire file drawer. A lot of the medical stuff is buried very deeply. This is going to be painful, made even moreso by the fact that the copier is clear across the school. Perhaps the Central Eligibility Report will suffice for all of this. Yeah, let them look up all the stuff!

Students desired postsecondary goals. This should take into consideration education, employment and community access.

Spaz is pretty darn sick of school and seems tired of everything else for that matter. He’s tired of going into the community, which he used to love more than anything else. But we need to put something down so I can say that he will pursue a placement in a day-hab/sheltered workshop setting. Also, because of the severity of his disability, paid employment is not a goal.

That last statement is a tough one, but it’s the truth. Even as a greeter at Wal-Mart, his spitting on people is not exactly going to earn him a big paycheck. He bites any materials he works with, and his hands are all in his mouth. At least he’s not biting people, and that’s progress.

Spaz will live with his family as long as possible but group home, respite and other living alternatives will be pursued. And I think those alternatives will be pursued diligently as his mother has endured a lot of hardship over the years with Spaz. I daresay, more hardship than most because Spaz has some extensive needs and some extreme behaviors which will try and test the patience of the best of people at their best. She’s had to endure being with him, who has only needed 10 hours of sleep per week, and his waking hours seem to be spent bent on destruction. He breaks things, chews on things, picks at things and generally raises havoc. Curtains, window blinds, windows, walls, electrical outlets, appliances, fixtures…nothing is immune once he fixes upon it without constant supervision. And try keeping your temper on less than 2 hours of sleep every single night.

Moving on…

Academic area: Reading

Well, if I had to pick his brightest spot, this might be it. Spaz can read a few sight words (Walk, don’t walk, go, in, out) but he’s not reading extensively beyond the pre-k level. His functioning according to an adaptive behavior questionnaire is less than a 2 year-old level. He might read at a 3 or 4 year-old level. They want accommodations and assistive technology, but there’s not a lot to offer as far as his reading.

Math

He can almost count to 15, and does so failry clearly with his own voice. Otherwise he uses an AAC device with supervision. Again, he is functioning at a 3-4 year-old level, tops.

Written Expression

Spaz has been working on writing his name for several years and can almost write “Spaz” legibly, but he does bite the pencil, pen and/or paper that he is writing on/with. Which means that writing is not very functional at all for him as he will destroy/eat whatever he is writing on/with. This includes a computer mouse or keyboard.

Learning Skills (Class participation, Note taking, Keyboarding, Organization, Test taking, Study skills)

He participated in class using his AAC device, answering orally or by pointing to people and pictures.

In every one of these areas, they want to no the accommodations, the date and an accommodations rationale. The rationale is the same every time for Spaz: He has a severe intellectual disability and his skills are negligible to nonexistent! That’s the assessment report’s words, not mine. But they have the virtue of being true. And depressing.

Social Skills and Behavior

This area is even more depressing, as he has a laundry list of all sorts of behaviors that have came, went, and returned again over the years. Why on earth am I required to fill this out? How can a parent read this, if it is a truly honest account, and NOT be reduced to tears?

Comunication

Independent Living

Environmental Access

Self Determination/Self Advocacy Skills

Career/Vocational

Medical/Family Concerns

On and on and on and on this thing goes! And that is only page 3. The accommodation for my student is basically the same: 1:1 adult assistance pretty much every time, and the rationale is that Spaz has a severe intellectual disability, and is functioning at less than a 2 year-old level. What else do you want me to say?

And then I get to summarize all of this to recommend postsecondary outcomes, which for him will require 1:1 supervision and support at all times. As a teacher, this is totally demoralizing. Yeah, I know he’s got a severe disability, but the outcome of 7 years of instruction should have come to more than this. No wonder most teachers quit before they see the results of all their work. It’s too depressing to contemplate.

The next section is even more depressing as if that were possible. It’s the student perspective. I’m somehow supposed to interview Spaz and ask him:

How does your disability affect your schoolwork and school activities? (Think about grades, relationships, assignments, tests, communication, extra-curricular activities.):

In the past, what supports have been tried by teachers to assist you in being successful in school?:

Which of these accommodations and supports worked best for you? Why did they work?:

D. What strengths should others know about you as you begin college or work?:

E.What has been most difficult for you in school?

As if Spaz is going to answer any of these!

What a load of rubbish.

And then we’re supposed to provide a list of contact information for service providers that parents may contact. And I know for a fact that our county has precious few, if any of these numbers. In fact, they had training material for filling out the forms and they used people at the board office as examples for each of those contacts for High School Team, Health and Family Services, Employment Agency, Community Agency, Institute of Higher Education as well as other agencies. I’ll be writing them to see if I can use their info! As it is, I know of no such database in the county, much less the county office of such agencies.  It’s as if they all have some sort of stealth technology to keep people from being informed.  I am NOT looking forward to going through this mess as a parent.  I also appreciate the parents who are doing it right now and blazing the trail for the rest of us.

This thing is painful to the max, emotionally as well as in the sheer scope of all the stuff they want. It’s the caseworker who has to fill all this horse manure out and it really stinks.

Thank you for listening, even if it was not as helpful as other entries about IEPs.  Maybe I’ll come up with a better informed follow-up or perhaps some of you can help me out

D.

Re: Unraveling the Mystery of Autism

I wish I had time to read a book like this, as I know a lot of other parents are reading it. However, I did manage to find the most top-rated review of the book by someone who DID read it, and her response is much better than anything I could have written.

Would that it Were so Simple, October 6, 2000
By Liane Gentry Skye, “www.lianegentryskye.com” (Florida, USA) -

Karen Seroussi has woven a remarkable, well-written story of her son’s recovery from Autism through tedious dietary interventions. Her offering of recipes gives the parents considering the diet for their children a place from where to start. As the mother of two Autistic children myself, I felt compelled to read it, even though a grueling 18 month trial of the diet in our home offered few, if any, results, other than depriving my sons of what foods they were willing to eat.
Seroussi is a gifted writer, and tells her story from her mother’s heart. But facets of her story disturbed me deeply. After reading this book, I felt my choice to live as a mother who has come to accept her children’s Autism and lead them towards a good life in spite of grim prognoses was viewed by the author as something to feel ashamed of. While this may not have been Seroussi’s intent, the insistence that something is wrong with parents who don’t try her techniques, or tried the diet and had it fail are somehow lacking was very bothersome to my heart.

Granted, dietary interventions have helped many Autistic children. However, this his book implicates that any parent who does not attempt the diet which benefitted Ms. Seroussi’s son is failing his/her child. Children who respond to diet are most specifically those showing a serum IGE response to specific allergens and gliadin antibodies. I’d strongly recommend any parent who considers putting a child through such a restrictive regime will get the bloodwork done first. This diet is not easy to implement and it is not easy to encourage an older child to follow it when away from home.

This book tells a rare, triumphant story. It is well documented, and worth a read. But please, don’t see diet as a cure-all if the techniques outlined simply don’t work for your child. The sad truth is, if diet were the cure, there would be no Autism.

I felt the need to blog on this because I had a parent of one of my students who wanted to try this diet bring the book up. I gave her what you read above plus a link to my blog so she can see whatever comments this particular article generates. And it will probably generate a few.

The Gluten Free Casein Free (GFCF) diet is controversial for a lot of reasons, most of which are covered above by Ms. Skye above. I do have a study that was done on dietary intervention for autistic behaviors and it did seem to indicate that the diet might be helpful:

Knivsberg, Reichelt, Hoien and Nodland (2003) Effect of a dietary intervention on autistic behavior. Focus on Autism and Other Developmental Disabilities, 18, 247-256

Abstract:
Autistic syndromes are characterized by impaired social, communicative, and imaginative skills. Urinary peptide abnormalities, in part due to gluten and casein, have been detected in some individuals With autism. These abnormalities reflect processes With opioid effect, Which may explain the behavioral abnormalities seen in autism. The aim of this single-blind, controlled study Was to evaluate the effect of a gluten-free and casein-free diet for children With autism and urinary peptide abnormalities. Observations and tests Were carried out With the 20 participanting children before they Were randomly assigned to either the diet or the control group. The experimental period Was 1 year, after Which observations and tests Were repeated. Significant reduction of autistic behavior Was registered for participants in the diet group, but not for those in the control group.

It’s the best study I’ve ever seen on the subject, but it still has flaws that you can read for yourself if you want to get the full article.

My wife and I did try the diet when our son was younger. It was not the best of efforts and it was resisted strongly by Thomas (I’ll keep his blog name the same to avoid more confusion than there already is!). His favorite food of all time is pizza which is pretty much nothing except gluten and casein. His favorite thing to do of all time is to eat out at the neighborhood pizza buffet. So right off the bat, we were off to a poor start. Let’s add a couple of other things into the mix:

• - He has a younger brother who likes pizza, hot dogs, cheese burgers and other more typical “kid food.”
• - He has a mother who basically likes the same sort of diet.
• - We were a single-earner family, and that would be me on a teacher’s salary.
• - We had a lot of other things going on just like everyone else

The cook in the family is me, and I resisted the diet for a long time because of the bother and the expense, but my wife, Jane (We’ll keep her blog name too) convinced me to try it, especially after I read the above study. So I did more research on the subject and did some thinking.

Wheat is not native to North America, so the people living here before the arrival of Europeans had to live on something else. That thing was maize (corn) and a variety of vegetables and potatoes which *are* native to the Americas. So it seemed like a more simple task for us to adapt to a more native diet as opposed to trying to find adaptations of a European one. I was thinking outside the box, but apparently ranged too far for the rest of the family. I did by the corn and soy-based noodles and flours and assorted other GFCF foods.

The entire family, including Jane, rebelled and none of them really went for it. They were sneaking donuts, cheese, pizzas and every type of forbidden thing every chance they got. The thing about doing this sort of diet is that “in for a penny, in for a pound.” You are either all in or all out. Having ANY gluten at all basically kills the whole process. This is not about scaling back or reducing intake it is about going cold turkey! So the entire family really has to be on board for it to work, and it was a forgone conclusion that by the end of our experiment the only one who stayed gluten free was me. That’s because I liked the things I made with corn tortillas and I don’t mind eating the same thing almost everyday. For everyone else, it was not a happy arrangement. The corn and soy noodles are probably still in our pantry as is some extra GFCF pancake mix.

Will a parent see improvement? Some will and some won’t, but this is not a light undertaking. A body has to be willing to go all the way with it, which our family was not collectively willing to do. And you know what? It’s all right. We are not poisoning our children by letting them eat the food they enjoy. We balance our meals with fruits and vegetables every meal. I grow a lot of my own fruits and vegetables in our own garden. Our family is okay and I might venture to say we are doing well because we are a more balanced family that has gotten away from letting autism rule over our lives. It’s something we live with and deal with but we’re not going to let it dominate us and get us all down. Parents who don’t want to try every single intervention under the sun shouldn’t feel guilty for not doing it anymore than I should be made to feel guilty about not getting LASIK surgery for my eyes. I have bad eyes and I wear glasses. My choice. If Thomas decides he wants to go on the diet later in life, that’s his choice. What about those autistic persons who can not make their own choices? Then caregivers do have to make those choices and make it on the best information available.

But let’s knock off the evangelical guilt-mongering by the various proponents of various cures. If you have a cure, conduct a study and publish it and open yourself up to some serious scrutiny.

D.

Amidst the death march known as IEP season and the end of the school year, I took time out to to attend a workshop on eLearn, otherwise known as Moodle.  I like using the term Moodle better than eLearn, but that’s just me.  Newton County has its own ideas.

I had a chance to see what others were doing from around the county on their eLearn sites.  We had elementary and middle school teachers represented with one other teacher representing another high school.   Most of the time was spent actually working on our Moodles, with basically everyone getting theirs better ready for a fall roll out.  Some of us have not been very active on our sites for a very long time.  In fact, according to our illustrious instructor, Beth, that would be most teachers.  I would be one of them, up until a couple of months or so ago when I decided to take on this new project where eLearn would play a prominent role.  Even then, it was a bit of time before I tackled putting together modules since I have to generate all of the content by myself.

Other teachers can use Google, PBS, United Streaming and various other sites to put their content together.  Mine is mostly self-generated although I am starting to see things appear on TeacherTube that might be useful that I can use.  If any readers are generating content and posting, let me know!  My stuff is available and out there for the taking/viewing/using and I have more stuff I’m getting ready to put up.

Back to eLearn/Moodle, I did manage to pick up most of the things I wanted out of the class so that I can [roceed to develop the site.  One think I quickly learned is that my site was looking visually impoverished as everyone else had all sorts of nifty graphics and animations on their sites.  I thought I was doing well on original content and even some interactivity, but still have a long way to go.

I plan on taking the advanced course this summer, so perhaps I’ll be blogging that, but no promises, especially since I have a backlog of posts that need to be rolled out.  But it was nice to be around another techno-nerd in the school system, as we seem to be relatively few and far between.  It would be neat to get self-identified propeller heads together for a one day convocation/conference/confab before school starts, sort of like a mini SXSW for teachers and teaching.  It could be done in conjunction with new teacher orientation.  Nothing too heavy, but just getting tips, tricks and contacts before school starts.

Who knows?  Maybe I could become a sort of Scoble for education.

D.