Tag Archives: Autism/Asperger’s

Autism, Post-School Transitioning and Beekeeping

14 May

As my oldest gets ready to complete his first year of high school, transitioning is a topic that weighs heavily on my mind.  It’s made more acute by the fact that in my business of being a special education teacher, I’m busy writing something called a “Summary of Performance” for all of my graduating seniors.  This is a document that is meant to capture all of what the student did in his/her high school years and then outline what resources might be available for those students when they transition into post-school life.

Here’s a newsflash for other parents of students with autism: there are precious few resources out there and almost all of those that exist are grossly underfunded, many with waiting lists that are measured in years.  Once a student leaves the world of k-12 education they are no longer serviced or protected by the law known as IDEA.  An IEP means nothing once they get out school.  There is the ADA and section 504 of the Rehabilitation Act of 1973.  But these are no guarantees of services, only guarantees of non-discrimination.

So my Summary of Performance will list myself, my lead, the transition coordinator and if I know where they might go to school or college, the contact information for the student support services.  And that’s about it.  Those with more involved or severe disabilities might have access to vocational rehabilitation services, but in Georgia those services are limited.  And underfunded.

I’ve written about the Summary of Performance before, in my IEP series.  That whole series is in need of an update, since I’m working with an entirely different population now, and some things have changed in the last 7 years since I wrote that out.  But Spaz, the object of that post, is a case in point for those with more severe disabilities.  When I saw him and his parent 3 years after he graduated, he was still on a waiting list for supported employment.  And this was actually a parent who had done some pre-planning.  Taz graduated a year later and I saw his mother in the store less than a year ago and he is still on the same waiting list– six years after graduation!!

This is why parents don’t like thinking about post-school transition planning because it is that depressing.  My oldest was only 9 when Spaz graduated, but it was still in the back of my mind.  Far in the back.   But time marches on.

Since that time, he is still mostly interested in trains.  Everything he does intentionally has some focus on acquiring some more model trains.  This is autism at its most classic.

So I’ve been working at finding the boy some sort of marketable skills.  The fact is, he can be a dependable and hard hard worker, albeit rather slow.  He really doesn’t complain at all about mowing my large-ish lawn with the push mower, no matter how hot it is because he knows he’s going to get paid.  And the whole time he’s mowing, he’s thinking about the new train set he’s going to buy when he saves enough money.  And since he’s looking at getting a Lionel train set, that’s a lot of lawn mowing because they aren’t cheap!

And this is the part where my other blog intersects with this one, as I recently got a bee hive.  Actually I bought the hive for him at Christmas and we just got the bees.  Just like the lawn mowing, his interest is making money to buy trains.  But he IS interested, and so there’s an opening there for expanding his interest into something somewhat marketable.

It doesn’t hurt that this is also an interest of mine.

In a more rural environment, a lot of autistic behaviors might have been written off as being odd.  Farm life generally moves at a slower pace, in tune with the more natural rhythm of nature.  The transitions involved in agricultural are more gradual as opposed to a more urbanized life that seems to involve a faster pace filled with more stress as things seem to be more time-sensitive.  Factory life historically meant doing the same thing over and over and over again and the transitions were extremely predictable.  Basically the workplace in earlier times was not nearly as hostile to someone on the autism spectrum as it is today, with a more service-oriented and socially driven economy.  It’s easier dealing with plants, animals and things than it is dealing with people.

Fortunately, the bees don’t require much space at the present time, unlike a herd of cattle.  I used to joke about having to get some cows when my boys got older so they would have some chores to do.  I didn’t realize it while growing up, and in fact resented it, but those farm chores I had growing up did help instill a work ethic that still serves well today.  And that background might be an entry into something meaningful and productive for the next generation.

The Newest Bee Keeper

The Newest Bee Keeper

A Few Words About Bullying

6 Oct

no_bullying_category

It has been over a year since my last post, and I thought I would take a shot at a return to writing by tackling the subject of bullying since October is National Bullying Prevention Month.  At least a quarter of all the students in the school where I work are there because of bullying, including one in my own household.  I remember seeing him as he was writing on the whiteboard when one of his teachers asked the students why they had chosen this school and he wrote “NO BULLIES!”  I was a bit surprised.  While it was a persistent problem at his previous school, I had thought that they had taken care of the situation.  But apparently it was still foremost in his mind.  My oldest is not a perfect student, and there were times when his own behavior could be construed as bullying.  Although he would never actually resort to real violence, he would resort to a threatening tone often enough.

Bullying has been around since the first time kids ever got together and decided to ostracize one of their peers.  Kids seem to naturally gravitate toward that Lord-Of-The-Flies behavior and sometimes adults do too.  And anyone who has ever posted a YouTube video or even written a blog has experienced the cyber version of this, thanks to the anonymity afforded by the medium.  However, the internet’s community-building has also  created safer places for kids who might be different so they can bridge the gaps created by physical geography to connect and share unique interests with each other.  There’s never been a better time in history to be a nerd.  The internet was created by nerds for other nerds, and the rest of the population eventually jumped on the bandwagon and made it hip and cool and an environment almost as treacherous as the real playground.

I was bullied pretty relentlessly while I was in school.  I was not “tough”, I wasn’t a jock and I wasn’t cool, although heaven knows I really tried my best at all of those things.  Being socially awkward and not a member of the cool crowd carried (and probably still carries) a pretty heavy price tag in small-town America.  It gets even heavier when you move from one to another, and you have no established family ties in the area and everyone else seems to be related to each other.  And if you didn’t have the money for the coolest clothes, cars and consumer goods, you were were pretty much out of luck.  The town I spent most of my time growing up in, is actually now one of the most diverse communities in the state of Iowa; a state not known for its diversity.  And I imagine the natives that didn’t eventually flee from the area HATE it!  I believe God has a unique sense of humor and this is proof of it.  A place that was pretty intolerant in the 70’s and 80’s now has it’s economy pinned to its diversity.

However, regardless of how I was treated I still have to ask myself a more important question “Was I ever a bully?”

I certainly was not the guy shaking down others for their lunch money or terrorizing smaller kids on the school bus.  But I’m pretty sure I might have done some things that were unkind to people who were lower on the social ladder than I was, as low as that was.  The desire and pressure to fit in, be cool and be popular would eventually get the better of me.  Or rather, it allowed control by the worst of me.  If I thought that it would have advanced my own social position, yeah, I would have thrown a rock or two at Piggy.  I probably said the wrong things to people that hurt them at some point.  So the line between the bully and the victim is not so clearly drawn, and I think we all have some darker part of us capable of inflicting misery on others.  There’s always some degree of intolerance, no matter how tolerant we think we might be.  Sometimes we lash out at intolerance with more intolerance!

It’s rather ironic that October is devoted toward Bullying Prevention.  As we approach November elections we’re going to witness intense bullying in the form of electoral discourse across all forms of media as each party clubs the other with negative advertising designed to cause lots of repeated discomfort for the other side.  I’m just referencing the treatment given to the topic by the American Psychological Association:

Bullying is a form of aggressive behavior in which someone intentionally and repeatedly causes another person injury or discomfort. Bullying can take the form of physical contact, words or more subtle actions.

The bullied individual typically has trouble defending him or herself and does nothing to “cause” the bullying.

Individuals with autism are especially vulnerable to bullying.  The prevalence of bullying is so high against and among individuals on the autistic spectrum that I would almost make an argument that it is as much of a Aspergers marker as repetitive behaviors.  The articles I linked to give a good treatment of the problem within this community and hypothesize as to the reasons for it.   It’s part of the body of evidence that allows me to stake a modest part of ASD  real estate for myself.

I think the most crucial skill we can teach our kids, especially those who are prone to being bullied, is to recognize when they are being baited and to bypass the temptation to become engaged in a battle that can’t be won.  Most arguments regarding religion and politics fall within that category but almost any area of interest or passion can be used to draw a person into a situation where they feel the need to defend themselves from attack.  Most cyber bullies will use those things to troll and trap a victim into a relentless cycle of abuse and it’s important to know when it’s time to just walk out and not respond at all like Zelda did.

The internet and social media have turned into a double-edged sword for people who have difficulties relating socially.  The buffer of the keyboard often gives people the space for free expression and voice where they might otherwise not have one, but it also provides the sort of cover that can be harnessed by miscreants who like to ambush people and set them off for kicks.  I’m grateful to be part of a school that offers a relatively safe place for students to learn without the threats of physical assault, incessant teasing and the anxieties of not fitting in becoming a distraction to learning.  There are still distractions and cyber bullying can still happen, but in our virtual setting and environment we are able to keep tight controls within our virtual classrooms.  For the most part, the students are friendly and very supportive of each other as they often find that they share a common history of maltreatment from their traditional settings.  This explains why there was such a flurry of agreement and supportive comments in the chatbox fpr a message on the white board.  NO BULLIES!

Thirteen Years Ago…

20 Feb

Saturday, my oldest turned 13 years old.

The pregnancy was almost absolutely normal, and I remember going through the childbirth classes with several other couples, sharing a lot of anticipation.  Finally, the day came.  I came home and my wife let me know that it was time to take that trip to Tallahassee.  I remember giving her a stopwatch and told her to hit the splits button whenever she felt a contraction.  All the way down, I could hear a “beep” every time she hit the button.  The watch was rather high tech, and would keep track of the closest and furthest contractions as well as the average time between them.  It’s the nerd in me that wanted to know such things!

We were doing pretty well, but it was a pretty long night.  When he was born, I remember cutting the umbilical cord and I also remember a swarm of nurses coming into the room.  I had no idea what was going on.  As it turned out he had a pneumothorax which caused one of his lungs to collapse.  He was rushed to the NICU, and I went with him, leaving his mother who was also in some distress of her own, unbeknown to me.

I remember him wiggling around as they attached the wires and tubes and needles.  He spent 4 days in the NICU, before it healed on its own without any medication, surgery or other interventions beyond oxygen. I was in a total daze.  I had no idea of what was happening at the time.  Or that this was just the beginning of a long journey.

In my wife’s words:

“[He] was born on his due date. As he struggled to take his first breath, his left lung collapsed. Within the following day, his lung had healed without requiring a chest tube. He spent a total of 4 days in the NICU. When he was 2 weeks old, we was back in the hospital with aspiration pneumonia. He was diagnosed with moderate reflux. When he was 4 months old, he started having seizures. At 15 months, he lost the ability to speak the words he had acquired. At 20 months, he was diagnosed with autism. I often asked, “God, why me??”

My wife was always a step ahead of me as far as recognizing when there were problems.  But it was my own background in special education that enabled me to recognize that we were seeing something akin to autism.  The when I asked him, the neurologist admitted that it could be some form of developmental delays and gave him the PDD-NOS diagnosis.  Pervasive Developmental Disorder – Not Otherwise Specified.   Back then, they seemed very reluctant to give an autism diagnosis, especially to someone as young as my son was.

Our story follows a similar trajectory of many other families as we experienced the ups and downs of life with autism.  We had the assistance of many good and competent therapists and teachers.  And there might have been a few less-than-good ones along the way.

He has generally been a happy child, but the teen-aged years are starting out very rough for him.  He has been changing into a young man for the past couple of years with his voice changing and then the attendant mood swings that goes along with this transition.  And typical middle school behaviors of his peers have not helped matters as other kids make fun of him, and he is unable to ignore or handle the name-calling and criticism like he could when he was younger.  There was a time when he often could care less what people thought of what he did or said, but today it is far different.  He is very sensitive about what his peers think or say and of course it is the negative things that get amplified.

In a lot of ways, he reminds me of Daxflame, a teenager who became somewhat notorious on youtube for his meltdowns on camera.  But if you watch (and they ARE hard to watch for those of us close to autism and Aspergers) you can see him struggling to control himself, to be understood and to make friends.

As hard as the videos are to watch, the comments are even more hideous. He exhibited a lot of courage putting himself out there like that.

So as difficult as the first 13 years have been, we’re entering some entirely new territory. In some ways this is much like all parents of teenagers, but with an added complication that makes the conformity demanded by teenagers all but impossible for my son. How does one “fit in” when almost everything they say or do makes them stick out?

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!

D.