Middle School Graduation

Kai's middle school graduation ceremony was yesterday.

Ahead of the ceremony, I was not overly excited about the occasion. After all, in this country, pretty much every child completes middle school. It's not like a college graduation which is the culmination of years of education, or even a high school graduation which is a significant rite of passage.

And so I was surprised by how emotional I got during the ceremony.

The principal of the school gave a great speech, reminding all of what an achievement this marked for the graduates of this school in particular. He talked about how people who face adversity turn out better for it in life, but that for the kids at this therapeutic school, they have faced greater challenges at a younger age than many do. He quoted Hemmingway from Farewell to Arms: "The world breaks everyone and afterward many are strong at the broken places."

Later in the ceremony, several of the students gave very touching speeches. A boy in Kai's class gave an especially moving speech, talking very openly about all of the trouble he had caused at the school, and how he had to go away to a residential school for a time, and then how he was able to turn around his life in the past year to the point where he was chosen to speak for the 8th graders. His remarks give hope that situations that seem so dire (to his parents, especially, I'm sure) were not hopeless. And that this school played a big part in helping to turn this boy's life around.

Kai had many challenging times in middle school as well, but when we step back we see that he is a very different boy than the one who started at middle school. As he walked down the aisle when the students made their entrance to the ceremony, he seemed calm and poised. And when he walked across the stage after he received his diploma, he raised turned toward the audience to move the tassel on his cap from right to left to indicate that he was a graduate. (Few others did that). And then he raised both arms briefly in triumph.

And so, this ceremony, from start to finish, was a reminder of the journey we have been on with our son, and of the progress he has made, and how he emerged through some rough times to emerge "strong at the broken places."

After the ceremony, we spoke with several staff and they were all effusive in their optimism that Kai is ready to go to his home high school.

Thanks to all of the staff who made such an impact on our son. Here are a couple in particular that we were instrumental with Kai:

Kai's primary teacher in 8th grade... Kai bonded very strongly with Mr. Howard who made a big impact on Kai:

Kai's classroom therapist for his three years at the middle school, Ms. Levin, who persisted through all the tough times:

And of course we were also very glad that Kai's grandparents could be there for this big occasion.

Later, we had a barbecue at home to celebrate with other family members who could not make the graduation ceremony.

And so marked a milestone that was indeed very special.

Onward.

Level 4

He did it!

After coming so close a few months ago, Kai attained Level 4 at school this week.

My son’s public therapeutic school uses a level system. Students transfer to this school when they have behavioral challenges at their neighborhood school. When they first enter the therapeutic school, they are considered Level 1. As they pass progressively tougher standards of good behavior, they attain higher Levels. When they reach Level 5, they may start the process to transition back to their neighborhood school.

When Kai first started at the school in the middle of his kindergarten year, it was hard to imagine that he would make it to Level 2, let alone ever get to Level 4. We went through long periods where he had major incidents seemingly every day. If we had kept all of the shirts he bit and tore to shreds, we would have a dresser full of them.

But in the past year and a half, his incidents occurred less often and were less severe.

And so, in his last week of third grade, he was able to reach this notable milestone.

I still don’t see Kai returning to a mainstream environment anytime soon. He still requires a lot of support at school to help him keep from getting too angry or upset. His therapeutic school can provide that support; I doubt that his neighborhood school would be able to.

But we are very pleased to see the progress he is making.

Good job, Kai! We are very proud.

Fighting His Emotions

My wife regularly joins my son’s weekly psychotherapy session. Yesterday, Kai said he was hungry so he and the therapist went to the clinic’s snack room. When they returned, the therapist told my wife that Kai told her that he wants to have a fight a particular boy in his class.

“R___ is going to make Level 4 tomorrow,” he said as explanation.

My son’s public therapeutic school uses a level system. Students transfer to this school because of behavioral challenges they have had at their neighborhood school. When they first enter the therapeutic school, they are considered Level 1. As they pass progressively tougher standards, they attain higher Levels. When they reach Level 5, they may start the process to transition back to their neighborhood school.

Several of Kai’s former classmates have gone back to their old school. All of those kids arrived at his school after he did and made enough progress to go back, while he is still there.

Kai came close to making Level 4 himself last month before he had a major incident three days shy of the threshold. Now, with R___ due to hit the milestone today, Kai will be the last child in his class who has been at the school for more than a couple years who has not yet reached Level 4.

For a boy who has trouble linking all the pieces together in his mind, the result is that he wants to fight R___.

He doesn’t understand that R___’s achievement really has nothing to do with him. That he should not be angry with R___, and should instead be a good sport and congratulate the other boy. That he, too, can make Level 4 if he continues to have the good days that he has had lately. And that he will damage his chances if he chooses to take out his anger by starting a fight.

The psychotherapist who was with my wife and Kai at the time he declared his intention to start a fight explained that Kai gets angry because he doesn’t want to feel sad. She said that it is difficult for him to feel sad emotions, and so he channels it into anger instead.

And so, my wife, especially, is feeling sad for Kai. She wonders how he feels seeing so many of his classmates being lauded for their accomplishments while he finds it so difficult to stay safe even for one day. She wonders if he thinks less of himself for still being at the school while other classmates have moved on.

In the past, Kai never seemed to care too much when he told us about another student achieving a Level change. Whether his feelings about it have changed, or he is just now able to better express his feelings, it is apparent that he really does care, and that it bothers him a great deal.

Last night my wife emailed Kai’s teacher. She gave her a heads up about how Kai is feeling. And she asked her to take extra care of Kai today.

We understand the value of a Level system. We know that Kai has to earn his achievements.

But I think it’s also important to understand how a child may be feeling, and to provide a little extra support at times.

And today might be a time for him to get a little extra TLC.

A Safe Month?

My son attends a public therapeutic school. The kids who go there have social and emotional challenges that result in behavior issues. As the staff works with each student to overcome their challenges, they celebrate achievements along the way.

One such milestone is a Safe Month.

My son has had stretches of good periods, but going an entire month without a major incident has proven extremely difficult. It has been relatively rare for Kai to go even just a week without chewing up his clothes, attempting to bite or hit his teachers, or display other unsafe behaviors.

While we don’t like to compare, we can’t help but notice that virtually all of Kai’s classmates have achieved a Safe Month some time in the past year, and some of them have done it several times.

The Safe Month award is announced on the first Friday of the month. Kai tells us which classmates were honored, and when he does, I always sense the disappointment that he had, once again, fallen short.

We encourage Kai to try again in the new month, but I sometimes got the sense that he felt it was beyond his capabilities.

There have been times when he was really motivated to go for the Safe Month. He might have a good first week or two and we would start to think that this would be the month.

But then something would happen – a disappointment that he couldn’t accept, a change in the routine that he couldn’t handle – and there went the Safe Month.

“It’s too hard!” we heard him say many times. “I can’t do it!”

This month, he has been teetering on the edge of not being safe all month. We have heard him express anger several times at something a teacher did. His daily point sheets have shown that he wasn’t always respectful to staff. But while he’s had several timeouts at school, he had not crossed the line into unsafe behavior.

As we entered the final few days of the month, my wife and I wondered if he could actually do it.

This evening, as I walked from the office to the train station, I made my usual call to my wife to let her know which train I would take. Kai asked to speak to me.

I could barely hear him over the street sounds, but I made out what he said.

“I had a safe month!”

It was great to hear, of course. I don’t have illusions that we will never have anger issues again, or that it will be smooth sailing from here.

But I hope that this will let Kai know that he can stay safe at school for an extended period of time, and that he can achieve things that he perceives to be very difficult if he really sets his mind on it. I hope he gets a sense of accomplishment that sticks with him for a long time.

But enough deep thoughts for now.

Tonight, we celebrate!

End of a Dream Marks a New Beginning

Today marks the one year anniversary of our son attending a therapeutic day school.

A year ago, we were an emotional wreck. Our dreams of having our son mainstreamed at our neighborhood school had ended. And with that, we felt disappointment, failure, hopelessness.

But, as the old proverb says, every end is a new beginning.

In retrospect, the actual end of the dream did not come suddenly. It was more like a slow-motion crash that you see happening, but are powerless to stop.

Throughout the first several months of Kai’s kindergarten year, we received near-daily incident reports from his school about some inappropriate behavior he had engaged in. He wasn’t listening to his teacher or following directions. He was trying to hurt himself or someone else. He was shouting or otherwise acting out.

Beyond the behavior issues, Kai was making almost no academic progress. While all agreed that he was a very bright kid, you couldn’t tell by the work, or lack thereof, that he did in school every day.

The pressure we felt was enormous.

There was the pressure we felt from others. My wife, who took Kai to school every day, suffered the disapproving glare of the other parents. Whether real or imagined, she felt that they were looking at her and thinking, “here is the terrible mother and her bad kid.” I was certain that not all of the other mothers felt that way, but was disheartened when I found out that some did indeed complain to the principal that our son was in their kids’ class.

We also had a lot of self-imposed pressure. We thought that if our son didn’t do well in school now, he would never be self-sufficient in life. It was as if his entire future rested on whether he could succeed as a kindergartener. With each passing day, as incidents continued to occur, the dream was being crushed, and the pressure kept building.

Finally, about halfway through the school year, the school “suggested” that we find alternative placement. It was the end of the dream. But, over time, we would discover that the pressure was gone as well.

Our immediate concern, though, was to address the “what now?” question. We were discouraged to find out how few viable school alternatives there were. While we found a number of schools that specialized in kids with autism, all seemed to be more appropriate for kids that had more severe disabilities than Kai. For higher-functioning kids, there were few choices.

We ended up visiting five schools, a mix of both private and public. One school’s approach was at odds with that of our son’s therapeutic providers. Another had the right philosophy, but did not have kids that were developmentally similar to our son. Another was too far away, we decided.

We ended up going with a public school that did not specialize in kids with autism; rather, it is a school for kids with behavior issues. When we were first asked to consider this school, we had trepidations about sending our son there. A school for kids with behavior issues? Our son isn’t a bad kid like those kids. Won’t he learn bad behavior from all of them? Wouldn’t he be better off at a place where the kids are well-behaved so they can model the appropriate behavior for him? I do realize that we felt a similar sort of prejudice about these kids as the parents at our neighborhood school had about our son.

Nevertheless, we addressed our concerns with the program coordinator of the school. He first asked us how it was working out for our son in our neighborhood school where kids are modeling good behavior for Kai. We had to acknowledge that it was not working out so well. He then explained that kids like our son cannot learn proper behaviors simply by watching their peers. They need more help. They need to be taught how to cope, and how to make better choices. This therapeutic school has the staff and supports in place to do this, he said. He went on to explain that any poor choices that the kids may sometimes make are not examples to be followed, but, rather, are used as learning opportunities for all the kids.

And so, Kai started going there last February.

It turned out to be just the place for him. The other kids, we soon found out, weren’t any more “bad” than our son. Some have ADHD, some are bipolar. Some have autism. But, like our son, they are bright kids who have struggled with maintaining appropriate behaviors.

The staff at this school are well trained, expert at dealing with kids with special needs, especially those with the issues our son has. He does excellent academic work there. He gets speech therapy. He sees a social worker twice a week. He gets help on developing social skills. And, most importantly, he is learning how to control his impulses and to make better choices.

As we turn the calendar, I want to point out something else that is notable. While today is Kai’s first anniversary at school, yesterday marked the completion of his first whole month of school without a major incident.

What a difference a year makes.

New readers may want to read my earlier three-part series:
Part 1: The dream of mainstreaming fulfilled, then broken
Part 2: Transitioning to a therapeutic school
Part 3: Comparing the mainstream school to the therapeutic school

Mainstream vs. Special School – Part 3

Here are the top ten differences between our son’s therapeutic school and his old neighborhood school:

1. The staff at the therapeutic school are specifically trained to work with kids like Kai. The staff at his neighborhood school mostly are not.
2. The environment at his old school was not conducive for a child with many sensory issues. His new school environment is designed for kids like him.
3. At his neighborhood school, Kai was assigned one untrained aide, and his teacher had too many students to be able to provide a lot of one-one-one attention. At his current school, there are three well-trained aides besides the teacher for a class that is half the size.
4. The near-daily incident reports at his old school made us feel guilty about our son’s behavior. His incidents at the therapeutic school are reported to make us aware.
5. At the regular school, he did not have much success learning in a regular classroom environment. At the therapeutic school, he gets a lot of individual attention which helps him excel.
6. At his old school, he was instructed along with the other kids in class, most of who were behind him academically. At his current school, he advances at his own pace and is now doing 4th grade reading and math.
7. At his old school, his behavior would sometimes preclude him from participating in special activities. At his new school, special activities like working in the Snack Shop are set up specifically to provide him with learning opportunities.
8. At his neighborhood school, he stuck out for all the wrong reasons. At his current school, he was described by his teacher as being the leader in his class.
9. When he attended his old school, Mom and Dad were constantly stressed out. Now, our stress levels are lower.
10. At his old school, he felt like a failure for his inability to behave like other kids. At his new school, he often comes home smiling and cannot wait for us to open his backpack to check out his scoresheet to see how well he did that day.

Now, all of this is not to say that all kids with special needs are better off in special schools. I am only reporting the experiences that we had. It would be wrong to generalize for everyone else.

Ideally, we would like it if our son could get the same type of supports while also benefiting from being in a mainstream classroom. So that raises the question of how kids with autism can be successful in mainstream environments. I think the keys to success are providing the supports they need, which includes having adequate numbers of well-trained staff, making adjustments to the classroom and school environment, and changes to routines and procedures. With the realities of the public school system these days, how likely is all of that to happen? Our neighborhood school is a good school, with good teachers and staff, and they do a good job of educating most kids. It just wasn’t the place for Kai, at least for now.

We are fortunate that we found an alternative that is helping him learn, both academically and behaviorally.

If you have not already done so, you may want to check out Part 1 and Part 2.

Mainstream vs. Special School – Part 2

Change of any kind is hard for six year olds with autism.  Changing schools in the middle of his kindergarten year was going to be a huge adjustment for our son, we figured.  If his last day at his old school was any indication, it was going to be a long transition. (If you have not yet read Part 1, click here.)

Our son started attending a public, therapeutic day school in February.  We tried to prepare him for the transition from our neighborhood school.  With the help of the social worker at his old school and other therapists who worked with Kai, we created a social story about changing schools.  We also drove to his new school before his first day, and he got to spend a bit of time seeing his classroom and meeting his teacher and other staff.

When he started at his new school, he had a bit of difficulty during his first week, but, somewhat surprisingly to us, already did much better his second week.  He took to his new teacher right away.  Since he was one of only two kids in the class at the very beginning, that allowed his teacher to work individually with Kai quite a bit.  She was patient and enthusiastic.  She saw great promise in our son, and wanted to bring those to fruition.  For a child with so much anxiety, finding a trusted source of support in an unfamiliar place was very comforting.

About a month after he started at his new school, we had our first parent-teacher conference.  Besides his teacher, we met the classroom teaching assistants and the social worker assigned to Kai.  We were very pleasantly surprised to learn that the staff there was actually able to get Kai to do some schoolwork.  We found out that he was reading at a second grade level and doing third grade math. 

We also noticed that Kai seemed happier.  I’ve got to believe that he was aware that he wasn’t being successful at his old school, whereas now he was fitting in and knowing that he was doing pretty well.  His teacher told us that even though he was the youngest, Kai was the leader of his class, which had grown by then to five kids. 

At the Open House we went to last week, we saw that his growth has continued.  He is now in first grade and is doing 4^th grade work.  He has a new teacher for first grade, and she and the assistants in that class seem just as committed and capable as his previous teachers.

I don’t want to paint an overly rosy picture and imply that his behaviors have magically improved and there are no longer any issues.  That is not true.  There certainly have been many incidents at his new school, too.  But, the difference is, the staff there are trained and prepared to deal with those behaviors.  They use it as an occasion to teach the child.  And, I believe that he is learning.

There is a saying to be careful what you wish for because you just might get it.  We wished for our son to be mainstreamed, and while the wish came true, things did not end up the way we hoped.  On the other hand, sometimes good things come along when you least expect it.  Our son ended up in a much different place than where we dreamed, and he is better off for it. 

Tomorrow: Summing up the differences between a mainstream and therapeutic school environment.

Mainstream vs. Special School – Part 1

It was Open House at our son’s school last Thursday.  Kai was so excited to show us his classroom.  It was great to meet with his teachers and staff, and to see what he has been working on.  Kai is going to a therapeutic day school, has been since February.  The teachers there all seem enthusiastic, energetic, and very capable.  The Open House made me think of how much has changed in terms of school in the past year. 

A year ago, Kai had just finished his first month of kindergarten at our neighborhood school.  He was in a mainstream classroom, which, at one time, was a dream for us.  But, the reality was already starting to show that the dream was not going to turn out the way we hoped.

From my personal observation, I think that most parents of children on the autism spectrum want their kids to be mainstreamed in regular classrooms at their neighborhood schools alongside neurotypical peers.  We certainly did.

 “Least restrictive environment” is the battle cry often heard.  It is our son’s right to be in a mainstream classroom, our thinking went.  How will he ever learn to function in the real world if he is isolated from neurotypical peers and not allowed to attend a regular school?  How will he learn to communicate and socialize with other children if he attends a “special” school full of kids like him who have trouble in that regard themselves?

I now realize that mainstreaming is not a panacea, and that it is not the best choice in all cases.  Before we get to the reasons behind this change in thought, let’s backtrack a bit.

For the first year or two after Kai was diagnosed with autism, my wife and I never dreamed that he would ever be able to attend regular classes at our neighborhood school.  After all, Kai did not speak or respond to anyone, and he had many behavioral issues.

But, as time went on and he improved in so many ways, we started to think more and more about the possibility that perhaps our son could be mainstreamed.  Our behavioral therapists worked hard to prepare Kai for school.  They drilled him in academics so he would not be behind the other kids.  They practiced school routines like calendar time and lining up and raising your hand and taking turns. 

Our lead therapist recommended that Kai attend a regular preschool as preparation for attending a mainstream kindergarten class.  She found us a wonderful school that was very accepting and supportive of our son.  With Mary accompanying him as his aide, Kai adjusted well to preschool and was able to function fairly well.  As time went on, he was even able to attend a few days a week without Mary, who faded her support so that Kai would be more independent. 

With his success in preschool, we began to hope that Kai might have a chance to be mainstreamed.  We had the support and encouragement of all of his team of therapists, psychologists, and social workers.  We braced ourselves for a fight with our local school officials who we thought would try to place Kai into a special school.  When they agreed without a fight to allow Kai to attend our neighborhood school in a mainstream kindergarten class, it was a joyous day and quite a milestone in his road to recovery. 

The joy of our son being allowed to go to a regular school, however, did not last long.  On what seemed to be a daily basis, we got calls from the school about some incident that he had.  He would hit himself or kick another student or try to bite a teacher.  Often, this was precipitated by having to wait for something.  Sometimes he protested having to do something.

The school attempted to make accommodations for him.  An aide was assigned to him.  He would enter and leave the building separately from his classmates to avoid the chaos in the hallway.  He could ask for breaks and take timeouts in a different, quieter classroom.  The school social worker worked tirelessly to develop social stories, brainstorm ideas on how to address issues, and work with him personally to try to teach him acceptable behavior.

There were some successes.  His teacher said that Kai was well-liked by his classmates, and he liked them as well.  He had some good days.  But, all too often, his days were considered good when he had only a minor incident instead of a major one.  His success or lack thereof was defined by his behavior, and not at all by academics.  In terms of schoolwork, this kid, who everyone agreed was very bright, produced almost no actual work. 

As the weeks went on, our stack of incident reports that the school sent home was growing into our own little War and Peace, minus the Peace part.  It was taking a toll at home.  Stress levels were high.  We felt frustration with the school – they don’t know what they are doing!  We felt frustration with our son – why did you hit/scream/bite/say mean words?!  We felt frustration with each other.

Along with our own stress, we could tell that Kai was feeling anxious as well. While he could not fully express his feelings, I think he felt like a failure for not being able to stay in his classroom as he was taken to the class next door after each incident.  He felt singled out for his behavior, one time asking Mom, “How come the other kids don’t go there when they do something bad?”       

Over time, we got the notion that the school administrators and staff were stressing out as well.  They seemed frustrated about being simply unable to effectively deal with Kai.  It was apparent that most of them had little experience in dealing with kids like him, and that the school was not able to teach him, let alone get him to behave properly.  The aide assigned to Kai even quietly admitted to us one day that she was not trained to work with kids like him.

A little past the halfway mark of the school year, the school suggested to us that things were not working out and that Kai should attend a different school.  A part of us wanted to fight this – try harder!  But, we were worn down by the constant stress.  Perhaps we should try something different.

Along with officials from his school, we visited several schools that were candidates for placement.  After the visits, we agreed on the choice – a public therapeutic day school in a nearby suburb that specializes in kids like our son.  It would be a totally different environment for him.   

Kai didn't have much of reaction when we first told him that he was changing schools. I wondered if he really understood what that meant. But, by his last day at his old school, it had sunk in. Despite all the difficulties he had there, it was still his school, and his friends, and he was going to miss them all.  As he was leaving there for the last time, it was heart-wrenching to see him so unhappy as he shouted, "I'm so sad!" as he ran out the door crying.

Tomorrow: Attending a therapeutic day school