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You need to learn more about autism so you don’t judge me!

27 Dec

I remember my oldest when he couldn’t talk.  He finally started to talk when he was about 3 years old, after a lot of intense therapy done be various SLP’s, including a few working through Georgia State’s “Toddler’s Project.”  It’s only been a few years since they stopped tracking him and his progress, but I’m sure he was one of their success stories, combining AAC with various behavioral techniques.

Now we have a hard time keeping him quiet.  Back in the day, his meltdowns would be seriously long and loud crying jags that might even include him hitting himself.  The a couple of years ago, there was a lot of self-negativity as he felt awful about himself.  Some of it was actually amusing as he took responsibility for the sinking of the Titanic and the Cretaceous period extinction event.  During each stage, we always wondered what was next.  He’s almost 14 and has been going through full-blown puberty and teenage angst.  It can be a frightful thing for even the parents of the most typical children.  For those who have children with autism it is even ore perilous as so many things become magnified with adolescence.  The academic and social expectations go through the roof during middle school.

Just lately I have noticed a new trend with his meltdowns, which happen most often when we as parents put demands on him or reprimand him for doing something he should not be doing.  “OH!  You’re just discriminating against me because I have autism!” or “You hate me because I have autism!” or “You need to learn more about autism so you don’t judge me!”  He’s usually saying this while pulling at his own hair.

It’s kind of an astounding evolution in thinking and language.  But I do have to hand it to him: he is learning how to advocate for himself.  Back when he couldn’t talk, I would have never dreamed we would get to this place.  Even though the tantrums are not pleasant and even though when he gets to this point he doesn’t listen to anything anyone says, it is still movement forward.

We’re fortunate that he knew how to read before he could talk.  He always loved books and reading to him was actually something that was soothing and calming to him.  So when he was in 1st grade or so, we got him a book about someone who had a friend named Sam.  It kinda helped that he had someone close in the family named Sam.  We got it so maybe his own classmates might be able to relate to him better and it wasn’t long before he was reading it himself.  We never really tried to hide autism and what it was from him.  I do know parents that do that, in the name of trying to protect the kids from labeling themselves.  But kids do that anyway, even if they don’t know what exactly the label is.  Different.  Weird.  Dork. Nerd. Outcast. Freak. Geek. Retard.   Whatever you want to call it, kids will label themselves and each other.  I know parents who quit going on the annual autism walks because the kids were starting to ask questions about autism and why they were walking.

The latest book his mother got for him is Ellen Sabin’s Autism Acceptance Book.  He’s had that for a few years but now it seems to be sinking in that he is different.  The fact that he is using the label to kind of try to guilt us as parents seems to indicate that he is beginning to differentiate himself.  This is not a bad thing, even though it seems like he lashes out with it at the worst times.  He’s establishing an identity and autism is part of it.  It is part of who he is, and he isn’t trying to dodge this fact of his life.  In fact, he is kind of embracing it.  He can tell you that talking to yourself can be part of autism.  Being sensitive to sound can be part of autism.  He is getting to a point where he can articulate what is going on with him and is becoming more okay with it.  He’s not there yet.  EVERY teenager struggles with doubt and insecurity and finding a place to belong.  He’s trying to discover his own autonomy and identity and is gradually getting a handle on things.  Gradually.

I think the best way to help a child who has the ability to grasp the idea, is to be honest with them in all things.  And to accept them for being the individuals that they are.  We can all dream of there being some sort of cure, but that dream doesn’t help my son today.  It doesn’t help him with his schoolwork, his desire to fit in or to develop his own dreams for the future.  And by the time there is a cure, would he even want it?  He’s incorporating this into who he is and it looks to me like he is staking his claim on his own little piece of the universe.  It just happens to include autism.  I tried to search for “Autism Power” and all I saw were images, slogans and sights dedicated to “recovery”.  Unlike “Deaf Power” which returns all sorts of sites dedicated to the belief that deafness is only a disability because hearing people make it that way.  There’s a few images referring to Autism as a superpower, but I’m not sure I like that message either.

This (among other reasons)  is why I love the good folks on the Thinking Person’s Guide to Autism blog.  Autistics are beginning to take up their own cause for advocacy and are actually offering a lot of hope for people like my son.  The dialog is less on the horrible-ness of the disease and how hopeless it is, toward a more positive message of acceptance and that things ARE doable.  I see this as one of the major civil rights shifts of our day.  And if the numbers (1 in 88 births) are any indication, then we can expect a lot more voices demanding their right to exist.  Expect to see “Autistic and Proud” on a shirt or button near you.

A few notes about nutrition, fruit juice and Arsenic

30 Sep

There was some news that broke about arsenic in fruit juices and my wife was all over it, I think because HER mother had heard about it.  So I was enjoined to study and read up on the topic and here are articles and resources I have read about arsenic and Lead in Juice:

This is about traces of lead found in Juice boxes
.  You’ll notice that Minute Maid Apple juice, the preferred substitute for the juice I had been buying is on this list. There is a couple of good follow-up links about this and other heavy-metal scare studies.  Again, the recommendation is to have whole fruits and vegetables.  But more on that in a second…

I did read about the arsenic in juice, specifically the Dr. Oz study as well as other sites associated with the Tampa Bay press-commissioned study.

Next, I read rebuttles from one company as well as the one from the juice industry.

The conclusions are:
– There are no safe levels of lead Or arsenic
– lead and arsenic are found in the soil, the water and the air
– therefore, breathing, drinking and eating will be fatal no matter what…it is found EVERYWHERE.

Having said all of that, the reason for all of this for us, is trying to treat a chronic constipation problem in one member of my family.  So it might be helpful to see what nutritionists and doctors have to say about the topic, from the Dr. DMK collecton:

This one is by a pediatric gastroentologist about what to do.  Lots of info here, but a bit more complex and boring for most kids.
This is a simpler video that our kids might even be able to watch which has some different ideas.
And this is a video by a nutritionist talking about juice v. fresh fruit.  Kids could could and should watch this too.

Dr. MDK is a pediatrician from the New York area who interviews experts in many different fields.  This is actually a great resource for ANY medical question as the videos tend to be very concise and helpful.  And yes, he has done a variety of videos about autism and disabilities.

SO when buying, preparing and eating food, I try to look at all the factors, including taste, allergies and economics.  Everyone has different needs and preferences which makes food preparation a daunting task on even the best of days.  I’m quickly discovering that the freezer is my friend so if someone wants something not on the menu, there ARE healthy alternatives that can be relatively quick and easy.  Quick, easy and tasty rule the day around here, and so I’ve had to come up with ways to sneak in nutrition and fiber.

Having everyone armed with the facts at least minimizes the arguments so we can all make better choices.

Homework: A Harsh Ruler

6 Sep

This is what dominates our house on a nightly basis.  And by dominate, I mean in the most oppressive sense possible.  In the same way Pharaoh dominated the Israelites by forcing them to make bricks without straw, so it is that we seem to be forced to toil under the oppression of a load of homework.  I don’t think teachers and administrators fully understand the weight and stress of homework on a family that makes an attempt at doing the right thing and being involved in the sense that schools like.

Any sort of church or other activities during the week are absolutely out of the question.  My oldest in middle school does not get home until almost 5 in the evening.  Any sort of written assignment will take him hours to complete simply because he labors long and hard at those types of assignments.   Of course he also chooses to dawdle and procrastinate as much as possible, making homework time even longer and making it more painful.  If the school is Pharaoh, we his parents are the overseers charged with wielding the whip to keep him producing.   There is much raging and gnashing of teeth, especially since we are all tired, hungry and irritable at the end of the day.  But experience tells us that letting them eat before homework will delay the completion even longer into the night.

There are several factors which make homework more painful than it needs to be.  Some of these are because of the student (my kids) and some of these are because of the school and others are a combination of the two.  As parents, we try to take care of those things that we can in our own kids by not letting them procrastinate and making sure they do the assignments right.  But sometimes that is not an easy task.

Sometimes we don’t even know there is an assignment due. I know it is hard to imagine, but sometimes when we ask our kids if they have homework or if it finished, they lie.  That’s right.  They tell us they have no homework or they tell us it is finished.   However, the past several years, some teachers have active and updated Moodle sites (called ELearn in our county)  where they list the assignments and may even have copies of some of the material they pass out in class as well as other resources to help parents keep up.  It makes being an involved parent MUCH easier.  I know this is one more thing a teacher has to do, but nowadays, most grades and subjects are following each other, they might be giving the same assignments.  In fact we did use that knowledge once when my youngest didn’t write down his assignment.  While his 4th grade teacher did not have an active site, there was one across town who did, and we happened to know she did from prior experience with our oldest child.  So it was simple for us.  But if a teacher does not have an active site, they really should consider linking to one that is active.

Sometimes they forget their book or other needed material.  Kids can be forgetful, careless and disorganized.  Again, having an active web page that is updates can help.  And nowadays most textbooks have an online version available.  This has also made things easier for us.

Sometimes they did not learn the concept at school and have to be taught at home.  This can be a pet peeve of mine, although I understand there are a lot of reasons why a student does not get it at school, including distractions or their own inattentiveness.  Nevertheless, homework is supposed to be something the student should be able to do independently as a way to get more practice toward mastery.  However, many times the student has not even reached the acquisition stage of a skill or concept.  At this point, we as parent have to step in and take over their education because the school, for whatever reason, has failed to teach them.  I know this sounds like a harsh indictment, it is a simple fact that if my child has work to do and they have no clue how to do it, they have failed to learn it at school.  No matter the reason, the child still has to be taught and this makes the process of homework completion more drawn out.  And more oppressive.

Sometimes there is too much homework.  My middle schooler has 4 core subjects plus two electives, one of which is band.  If you want to be good at band you have to practice and they recommend 30 minutes per day.  So if each core subject follows the same guideline, we can have a total of over 2 hours of homework.  Fortunately it has not been that bad, but the estimated time is not the actual time.  30 minutes easily becomes 2 hours if any one of the above factors is true.  Teachers need to assign based on estimates and then dial it back by at least a third.  I would say cut it in half because a large portion of the students will take twice as long as you think they should.

Sometimes we, as parents, have no clue what they are supposed to be doing or we have to teach/reteach ourselves before teaching our kids.  For me this is less true of science but I can see many parents struggling with any or all of the subjects they have not used in years and years.  Just watch a few game show fails and you see how little many adults retained from their own schooling.

People just like these, everywhere, are making babies who grow up to be school children who will need help on their homework.  And seriously, even those of us with college degrees will struggle with 4th grade math the way it is being taught in schools decades after we were taught the same sort of math.  They are teaching it totally different from anything that I ever studied in an effort to increase math scores.  So if we have to teach ourselves before we teach out children, this will further slow and burden the homework process, as well as add to the considerable fatigue and stress of it.

Don’t forget all of those nifty projects that may not be mentioned until the night before they are due.  I have issues with projects that demand considerable time and resources from the parents.  I think about the single mother working 2 jobs to support her family and then she has to go by the store to pick up extra supplies for some sort of project assigned by the school.  Wealthy kids with wealthy parents have the nicer looking projects because their parents can spend the money and time to make it look really polished.  But even outside of this, the projects usually demand time above and beyond regular homework assignments and can take an entire weekend to complete.  So now in addition to the stresses of the week, it bleeds over into weekends and over breaks.  Our school board does mandate that no homework be assigned over breaks, which gives some relief.

The entire concept of homework needs to be reevaluated as to how it is assigned in both quality and quantity.  There are books and  a site devoted to lessening the homework crunch, largely caused by pressures caused by AYP and NCLB.  There is also research suggesting that homework is of little benefit anyway.

A Final IEP

4 Mar

While the biggest part of this blog is involved with what I do for a living, there is also another part that is invested in me as a parent.  It’s the parent-teacher combo that gives a bit of a more unique flavor to this enterprise.  It’s also what helps my blog fall under the category of “protected speech.”

I have two boys, and it has definitely been a case of diverging paths here in our household.  Today, my youngest (blogname Percy) had an IEP. I’m almost ashamed to say I haven’t been to any IEP’s of his, but I do have my reasons.  One was that I learned from experiences with my oldest that whenever I walk into an IEP it can precipitate a certain amount of wierdness.They can be long and arduous affairs, as everyone is double sure of crossing T’s and dotting I’s.  So I’ve stayed away and allowed his mother to handle these and for the most part they have gone pretty well.  At least up until this point.

Percy qualified under the SDD label: significantly developmentally delayed, which is the same label his older brother qualified under.  When his older brother, Thomas, turned 7 they did an evaluation and he qualified under the Autism label.  But no had started on Percy’s evaluation which is sort of unusual considering that they aren’t supposed to be any SDD 7 year-old kids as they are all supposed to be evaluated and go therough a new eligibity by then.  But Percy did not follow a typical SDD trajectory.  He did have a lot of shyness and social deficits when he started pre-K but by the time he was in kindergarten, it was obvious that these delays were very minor.  The boy loved school, loved learning and had zero behavior problems.  Academically, he took off and he has managed to make several friend at school as well as around our neighborhood.  This year he was consultative, which means essentially no real services and he has done nothing but excel.  He’s reading a grade or two ahead, if anything.  So, Jane and I were wondering just why he was in special education at all.  It was obvious to me, that the boy didn’t qualify unless it might be for gifted.  We might have held off from doing anything until a psychological except there is some sort of policy at his school that kids with IEPs need to be in a co-teaching class.  Jane and I didn’t really want this as he did so well this year without it.  Somehow, last year’s case manager managed to keep him out of that setting but this year’s case manager seemed determined to make sure he was in such a class for next year.  I had a good mind to simpy ask for a re-evalution and put her through the rigors of going through the re-eval process but in the end we didcided it was time to pull the plug.  So we requested he be withdrawn from services and as of today, he is IEP free.  I think much of his earlier developmental lags might have just been from picking stuff up from his brother, but who knows?  In anycase, he is exceptionally in his own way.  He’s definitely the kid you want in YOUR class and the kid you hope your kids want to hang around.

And then there is Thomas who recently turned 10.  While he is generally a good kid, he would drive you absolutely nuts if you were his teacher.  Academically, he can be pretty sharp at least until things get too abstract.  But socially and behaviorally he can be a handful.  And he has inherited a total disdain for homework, which now drives his mother (and me) nuts.  The boy can dig his heels in for hours…or at least until I get home.  At that point there is no more nonesense because I haven’t the patience for it.  I can get him to do it but it bugs me that so much of our interaction involves having to do this junk that I hated as a kid.  Now most of my interactions with him are negative because I’m having to correct, reprimand and generally get snarly on him.  He might pick up on the fact that I’m not into it, but I’m not sure how he thinks not doing it until I get home will make things any better for him.  Life is infinitely easier for him when he gets it done right away.

I’ll have to devote more blogspace to him and his drama later, but suffice it to say that he can generate enough of it for two people!  But at least there will be one less yearly IEP to worry about.

Church and kids with Autism

23 Jul

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!


Supporting Thomas

18 Aug

The last couple of posts have been a bit on the depressing side, and that is where I’ve been with this mess. However, I’ve managed to process things and become a bit more proactive. Actually, I’m more inclined to wait things out, but his teacher, his para and Jane are all beside themselves to figure out what to do. And it is my area of interest, afterall.

So I dialed into the county IEP data base and looked at his IEP from last year. We did not develop a behavior intervention plan, because he appeared to be doing well enough last year. However, last year was not easy the whole time and it dawned on me that we should still do a BIP for a couple more years beyond whatever his improvement, just to be safe. While there was no BIP last year, the one from the previous year was still available. I printed this out and looked it over. The targets of getting out of his seat and being off task were there and defined and then there was a very large list of interventions listed from a positive support model to antecedent and response prompting to consequences. I should know, because I’m the one that wrote it. I wrote it because there are so few other behaviorists in the county, and none that I know of at his school.

This is not to say there are not competent teachers at this school, because there are some very good ones. In fact most of them are excellent. But none are behaviorally oriented and since a BIP is by definition a behaviorally oriented document, it stands to reason that a behaviorist would be better off writing it. But I will say something else about about competence, which I covered in Parking it in Special Ed. In that post, I was a bit unfair to a fellow blogger, but my son’s present case manager is a case in point. She has done Title I reading but otherwise hasn’t taught special education in her entire life. Last year she had a special needs student in her class and demonstrated nothing short of incompetence with her. So I am not counting on this person for any constructive help. The only reason she wanted this job, is because she wanted a consultative-type job where she didn’t have her own class. It was a good deal for the administration, because they figured she’ll do less damage here. Plus, this teacher is on her last year before retirement. Get the picture?

So I wrote a brief note, attaching the BIP and asked for more information as far as the types of behavior, whether or not we needed more targets and interventions they have tried as well as some from the list they might want to try. I also asked if there were any interventions for which they needed more training or support. It was a very brief 7 point sheet, but Jane made me soften it up a bit and make it less formal. She’s a bit better with the emotional/social stuff than I am and since these are all women with limited behavioral background (and less background with me) they needed more indirect handling than I’m prone to. I come off as being abrupt sometimes because I don’t see a lot of value in small talk. I’m like a guided missile when I’m striving for a solution to a problem and hate being bothered by various niceties that society seems to need and demand. Could we just get to the POINT?!?

So, yeah, Thomas comes by his social ills honestly!LOL!

I’m thinking that once the teachers and para look at the BIP list, they may get some ideas and be able to take things from there. At the same time, I’m still going to look for a specific list of target behaviors so that we can take a stab at some data collection. Again, I may have to train his para since she has been at this only since last year, but it seems like she might actually be more competent than her (soon-to-retire) supervisor. And training paras is one of my other areas of interest! I just need to find the time to do it.

Phantom Menace

16 Aug

One of the things I promised when I started this blog was that it would be gritty, and contain the real life drama of being a teacher in a severe and profound classroom (in more ways than one) as well as being a parent. I’ve been very light on the parent bit. Too light.

So time for some gritty heaviness.

Yesterday, I introduced you to the idea of PANDAS and some of Thomas’ difficulties. For once, Jane is actually just as skeptical as me about this business. None of these conditions (PANDAS, autism, PDD-NOS, ADHD) have any sort of test a body can give. Every one is identified by some sort of shopping list of symptoms and behavioral characteristics. We are infinitely frustrated by this. It’s not like spina bifida or Down syndrome, where there is this definite physical marker or genetic thing. Autism and everything about it is like some sort of phantom whose outline you can just barely make out in the mist. You know its there. Or do you? We don’t know where it comes from, where it is or where it will be in the future. Something is there…or is it? What is it? Is it just bad behavior? Is my son just being a stubborn and obstinate shit that needs to be disciplined into submission?

His teacher called yesterday. Thomas is in regular 1st grade with support from a para. His teacher is actually pretty competent if not extremely empathetic. Her son, who is in 3rd grade, is identical in a lot of ways to Thomas, with the autism/PDD-NOS diagnosis. Her husband teacher MoID kids down the hall from me, so I there is a bit more of a connection than simply casual. Thomas is exhibiting a lot of wildness, immaturity, and generally disruptive behavior. Like at home, he requires constant, diligent supervision at all times. He’ll wander out of the room, get in the faces of other kids, hug the littlest ones around the neck, yell loudly, exhibit defiance…pretty much a uniform constellation of behavior problems.

Jane was the one who talked to the teacher, so she laid it all on me when I got home. And then she asked, “What should we do? Any suggestions?” I’m a behaviorist. This is supposed to be my thing. My area of expertise. However, before I can think like a behaviorist, I have to process as a father. And that is an energy and time consuming thing. We’re constantly having to adjust to new behaviors and new demands. I think any parent has to do this to some extent. There’s always some new thing on the horizon, some new developmental/emotional/behavioral issue. But it usually isn’t quite so bizarre and different. Like now Thomas want to smash and smush things. glue sticks, toothpaste, chapstick, crayons, bar soap…all smashed and crumbled. His impulsive behaviors are becoming more compulsive and not doing them can lead to tantrums and meltdowns.

It is a lot to take in and deal with.

One of the difficulties I’m having is wrapping my mind around the concept of compulsions. I get what a compulsive behavior is, but how to handle it as a behaviorist becomes tricky. From a cognitive perspective, compulsions are driven by a false or irrational belief that something bad may happen if a person does not engage in a certain behavior or set of behaviors. But this is unsatisfactory from a behavioral perspective. I can’t just assume anything regarding motivation. I’m going to have to noodle this out some more in order to determine function although it is looking a lot like automatic reinforcement. Thomas has a lot of marbles but he is very concrete in his thinking, so a cognitive approach will be challenging.

An instance of this is when his teacher was talking to another student. “I know you can do this! All you need to do is push yourself harder, and you can do a lot better!”

Thomas overheard this, and promptly went up behind the poor boy and gave him a hard push.

He was just trying to help!

At least I’m not contending with a lot of head banging and self-injurious behaviors. At least we have had an opportunity to mainstream, which I’m not sure is going to be able to be maintained. Right now he is fully included, with OT and speech therapy. We’re trying to hold on to as much of a regular environment as possible for him, but as he gets older and bigger (he already weighs over 70 pounds!) it will be more difficult especially if we see more aggression.


PANDAS: Muddying the Waters of Autism

15 Aug

I don’t cover a lot of things as a parent because, because it is harder for me to spot drama there. That’s not to say we don’t have episodes, because we do. All the time.

Thomas and Percy are typical siblings in many ways. They do fuss, argue, fight and tease each other as 7 and 4 year-olds might be prone to do. Percy might be described as the more “typical” of the two, because he is relatively trouble-free and compliant. I think he’ll be dropped from special education within a year or so.

Thomas is a different sort altogether. He requires constant diligence. I’m talking ALL. THE. TIME. He needs to be watched almost every single moment of his waking hours. And that is not small thing when he gets up at 5:30 most mornings. He mostly gets into things. He has always had a thing for getting into the refrigerator. He likes to look over the pantry when it isn’t locked. But by far, his biggest thing is water. Water, water everywhere! He’ll spend gobs of time in the bathroom playing in the sink, washing his wooden trains. Wood and water don’t go so well together. In any case, he’ll also get into the soap, toothpaste, shampoo or whatever he gets his hands on and makes a huge, gigantic mess. Stuff is everywhere!

The other day during Sunday school, he snuck out and into the bathroom, getting the front of his shirt all wet. In church, i was about ready to take him outside, which I have had to do the last couple of Sundays. In fact, it has been intense with Thomas all summer long.

He has tested positive for strep throat several times this summer. Jane has begun correlating his more difficult behaviors with possible infection and she has been right several times. The maddening thing about this, is that he has no other apparent symptoms! Jane started taking him in to the doctor last year when his behavior was getting too bad and the strep screen was positive almost every time. He would undergo a 10 day course of antibiotics and be okay for a bit, but a few weeks later it was all back again. It was absolutely crazy, because he didn’t complain of a sore throat, he had no fever and only occasionally had swollen adenoids. I was beginning to suspect that maybe the screening was all fouled up. They did some cultures, and these showed up normal.

I also admit to wondering if Jane and the pediatrician were both going loony. I have never heard of asymptomatic strep whose only marker was increased behavior difficulty. This is not the sort of antecedent most behaviorists look for when doing a proper analysis. But there appeared to be some correlation, nonetheless. Jane took Thomas to an ENT to discuss the possibility of having Thomas’ tonsils removed. The ENT did not recommend this and is the one who gave Jane the name to pin on this anomaly: PANDAS. I had never heard of it, either. Apparently there is something to it and the NIMH is looking into this apparent OCD/autism/strep connection. I’m still skeptical, but not as much as if I hadn’t witnessed this sort of thing with my own eyes. Thomas has been diagnosed and treated for strep at least 3 times in the last 9 weeks. Percy had it once, Jane had it once and I probably had it once back in June. Back when I did my bus physical in July, I had them do a screen on me and it turned out negative. The ENT seems to think Thomas is some sort of carrier but isn’t certain exactly what to make of it. Thomas tested all normal yesterday, so at least we have a NORMAL result on something!

As if autism didn’t have enough baggage attached, with digestive disorders, neurological disorders, immunity disorders, allergies…there seems to be some sort of other mystery illness to tack on to the list. Like all the others it seems to defy explanation and reason. Like the other things, it is difficult to see and identify. Like the other things, there are correlations and links that are not clear. Like the other things, there is no simple treatment or preventative.  I’ve just learned about the existence of PANDAS and am already sick of it!

This is probably another reason why I blog infrequently about stuff with the boys. It’s harder to be a half-way objective observer/commenter/participant when it’s your own child. There are feelings attached to everything I do, but with the boys it is sometimes too near to be able to focus. I know other parent bloggers who do it a lot better than I do so I prefer to let them tell that side of the story while I focus on the little universe of those with severe and profound disabilities and those of us caring for them. Being their teacher is sometimes difficult, but being their parent would be infinitely more challenging. So being a teacher allows me some semblance of detachment from the parent life, although neither teacher-life nor parent-life are ever far from me.

8-17-2010 update: Here’s a video of a doctor talking about PANDAS:

Getting Ready

27 Jul

Well, this is it.

Ready or not, tomorrow they are coming. The school year officially begins for students in Magnolia County as the buses begin rolling, the bell rings and teachers begin teaching. In many ways, that first day is one of the longest of the year second only to the last day. This is why starting on a Friday is a good idea that I like. It gives everyone a full weekend to plan and plot what they are going to do on the next day.

I have been visited by 3 parents during preplanning. Taz’s mother works here, so I expected to see her. She has been in a good mood so I’m guessing that she likes the new lunchroom manager. She will probably NOT like the fact that my door will not be open at 7:30 every morning this year, but we’ll deal with that later.

Spaz showed up yesterday with his mother and proceeded to exhibit every bit of his old aggressive behaviors of hitting, kicking, grabbing, pinching and scratching. Just when I thought we could retire that old data sheet, we will be starting from scratch…or scratches as it is back to the arm pads. Hopefully we can structure and teach that stuff out of him. He has spent the entire summer wearing his mother out. Today he was scheduled for graduation pictures which should be a hoot with his present state of mind.

We are getting one new student (that I know of) from the middle school. While he did not appear, his mother did. Until I pick out a name, he’s going to be the New Student. I’d just like something short, easy to remember and vaguely associated with him before getting a name. He sounds like a sweet boy, but it will take some time to get to know him.

Yet to appear is Jim, who was on Mr. Pyle’s caseload and moved here late last year. He might have moved away over the summer as some of our kids do move quite a bit. And finally, there is the student I’ll call Larry, who was also on Mr. Pyle’s caseload last year. I’ll give more info on them as the year goes on.

Princess has spent a lot of time in our room and is terribly unhappy about leaving us. She just walked through here on her way home and registered her anxiety. I’m not thrilled about losing her, either, but I’ve been trying to encourage her to do her best with this new teacher and with the new students. I’ve gotten fairly used to the idea of change, so I’m not quite so affected as she is. It’s a tough concept, change. You either get it and go with it, or you get resentful and bitter. Speaking of which…

Mr. Pyle is struggling to adjust to his new world of students with mild disabilities. He has no idea who will show up at his door tomorrow and he has no idea what to do with them. Frankly, I understand his discomfort and feel for him. But none of us have gotten IEP folders for our new students, yet which makes teaching the new kids a challenge.

In Georgia, the legislature passed a bill and Gov. Sonny Perdue signed a bill giving each teacher a $100 gift card to spend on educational supplies. Today, we got our cards which are actually a sort of preloaded Visa card. The card will only be good Aug. 3-6, when Georgia has it’s tax-free holiday for purchasing school supplies. If a teacher doesn’t use his/her card, it gets deactivated and becomes useless. Shoot…that’s next week, already! It can not be used for clothing, alcohol or other non school supply items. I have no idea how they’ll tell but they are numbered and we did have to sign for them so they could do some auditing if they had to. I already know I’ll be buying ink for the new printer the county bought for us AFTER I had ordered ink for the old printer. And that will pretty much blow the whole thing.

On the home front…

Thomas is SO excited about going to school. The boy has been waking up at around 6:30 all summer long but this week has has gotten up at 6:00 a.m. He actually is sort of getting the concept of time and is getting pretty into his routine of eating and going to bed at certain times by reading the clock. He is probably more into time than most other 7 year-olds and certainly more than most 1st graders. The boy has been trying to reset various clocks in an attempt to move his lunch and dinner times up or moving his bedtime back!!

Percy is going to pre-K at a different school than his brother. He sort of gets this, but it hasn’t fully sank in. He has been going to a summer session of a church pre-K this month, but going all day, everyday is going to be a new thing for him and will definitely wear him out.

While I have a certain amount of anxiety my wife, Jane, is probably the most anxious of all of us even though she is the only one NOT starting school tomorrow! Just has major anxiety about 4 year-old Percy riding the big bus and will probably take him to school, herself. I’m actually encouraging her to let him ride the bus. First, he really is looking forward to riding it. Second, driving there is going to be a totally nutty experience for any one on the road that morning. Seriously, Jane is only one of about 10,000 other (mothers) parents with the same anxiety she has. Kids pick up on that and they end up having that same anxiety all day at school.

It’s because of all the other Janes on the road that I will have to leave my house in the dark in order to get to school before the roads become too congested. We do have an elementary school next to the high school, so that traffic tangles with the high school kids and teachers and parents and buses and…well, you get the idea.

Actually, you don’t, because in addition to all of that, our county board of commissioners totally screwed up. We have two major roads going by the elementary/high schools which allow fairly good traffic flow on a good day. Guess where construction is going on this week to resurface BOTH of those roads?? I’ll be calling my board member tomorrow and letting him have it. They have done NOTHING all summer around here and wait until the week that school opens to cut BOTH roads down to one lane?

Otherwise, I’m looking forward to getting on with the show. For those of you still on vacation, reading me may help you appreciate and enjoy the rest of your summer even more! Here’s hoping that my day is too boring to provide material to post and I can talk about NCLB or IDEA or some other boring but meaningful education topic.


Spanking (Autism)

12 Jul

Spanking (Autism)

[slight name change because of the fetish traffic…not that I don’t appreciate it or anything!]

I’m treading lightly on this one, and trying to be sensitive about it. I’M sensitive about it and hope readers might at least try to be likewise. This is not easy reading. It certainly wasn’t the easiest thing to write.

A few weeks ago, Percy and Jane were out, and Thomas and I were at home. We were fiddling around out in the garden and then came inside. He demanded pizza and I told him it wasn’t time to eat yet. He then goes to the microwave and punches the numbers to make it 5:00. I informed him that wasn’t going to cut it. He screamed and I told him screaming was finished and put him in the brown chair. Then he did something he had never done before; he hit me. He just hauled off and whapped me in the leg!

Up until this point, neither Jane nor I had ever spanked the boys. We both grew up getting a belt (me) a spoon (her) or a switch (me again) but have been using a time out chair (the brown chair), like Supernanny uses. And for the most part it has worked. The next step is to put them in their room for time out. Problem is, starting last month Thomas took to throwing all of his books off the bookshelf and trashing his room.

Thomas hit me when I told him to sit on the chair and yelled “NO!” He and Percy have gotten a lot more defiant this summer.

All this is to say that Thomas’ defiance to me ended at that moment when I gave him two hard swats to his bare bottom. Then I put him in his room and warned him not to clear his book shelves.

Actually, his defiance didn’t end until the next moment, when I walked in and his books were all over the floor which garnered him two more hard swats. I then told him he was going to get more if he didn’t have it cleaned up when I came back. This was a couple weeks ago, and I have since not had the compliance and defiance issues Jane continues to have.

I’m not a big fan of beating kids. The behaviorist in me understands that punishment only suppresses behavior, and does not teach new and better behaviors. But the old style behaviorists knew something the more modern version has forgotten: Punishment works. In fact, the famous Lovaas Young Autism Project (YAP) used punishers extensively in their famous study where so many students “recovered” from their autism. That’s not to say I want a researcher or anyone else spanking or striking or shocking my children. But my parents, Jane’s parents and now me understands that it can be an efficient tool if juxtaposed with good teaching and good guidance.

Jane wanted to accuse me of teaching the boys how to hit, which I said was utter nonsense. They learned how to hit at school from their peers! Actually, I think hitting is more of an instinctual thing, anyway. I was not hitting to counter hitting, I was using it to counter defiance.

Hmmm. That spanking was not my intended focus, here. But now I see where I’m going to be accused of beating on my autistic child or something. The last word on that is this: I believe that part or teaching and parenting kids (NT or AS or otherwise) means turning them into productive human beings. Kids today (and many of their parents) often act like selfish animals. I’m not playing that, and my kids have a very concrete understanding of my authority. I care enough not to condone poor behavior. I’ll do it again if I have to. It’s not capricious and I take absolutely no bloody pleasure in it at all. Ever. But it works. I still get hugs and kisses. But if I tell them to sit on the brown chair, they do it and I do not get this “NO!” nonsense. Jane still does get an awful lot of grief, especially from Thomas. Sometimes she’ll just look at me, and I’ll give him the same instruction she just did (i.e. pick up your shoes) and he’ll do it right away.

Spanking is a controversial topic among parents and I feel somewhat like a traitor to behaviorists who have spent decades developing nonaversive and effective techniques. Not everyone can or should do it. I think it is a decision and a practice for parents to decide for themselves and their own situations. Any practice can evolve into abuse, and it is important to guard against that, but swatting a child on the bottom should not be confused with using knuckles across their face. In our household, I think we do have a good balance between Jane, who is ambivalent about the practice and me, who is cautiously okay with it. Thomas gets the connection between the behavior and the consequence, which is the most important thing. It’s not just about compliance (although that is a big deal) it is about learning some control. The consequences for impulsiveness can be dire, and I’m trying to work on that aspect of his behavior in a way where his life isn’t on the line. At this point, I know he thinks a bit more when he’s trying to decide whether or not to listen to what I’m telling him. I’ll take that.


Comments to this post are closed due to some posters who wish to abuse others and other such foolishness.