Saturday, December 20, 2008

Good Things

The past months have been good for us. With Sharky's placement at Bagley secure (and I do promise to one day complete the telling of that tale), we've had no need to deal with the school district. Whereas in the past they always insisted on having a district representative present at our IEP meetings, our last one in November was just parents, teachers, principal, and therapists. No one ever even mentioned asking the district to be there.

Dealings with Sharky's classroom staff have always been positive. They have all, in our case, had Sharky's best interest at heart, and all have worked within the limitations of the system to provide everything they can. There often seems to be an unspoken understanding amongst us all that the district is insane, and we are sharing in our toil under their reign. And many of them clearly have been rooting for us in our battles with the district, believing change will only come from the actions of the parents, not from the faculty.

Also, as the child of public school teachers, and as a former special education paraeducator myself, I hold a deep affinity and empathy for those who choose this path. It is hard, hard work, with mounds of expectations placed upon you by multiple parties - expectations which are invariably conflicting with one another, and impossible to meet with the resources provided. When my father advocated for his students, he automatically found himself in direct conflict with the administration. Teachers who cow to the administration run the risk of becoming disconnected from their students, and drawing the ire of the parents.

And it's no secret teachers and paraeducators are not adequately compensated, when considering both the workload and the importance of the positions. Sharky is currently in a Montessori program, which we worked very hard to get him into. In the 1960s, my father was president of the Illinois Montessori Association, and sent my two oldest siblings to a Montessori elementary. Of course, his teacher's salary was not enough to pay the tuition of one child, let alone two. So he took a job as a janitor at the Montessori school, which merited him free tuition for his children. And so a veteran high school English teacher and President of the state Montessori Association spent his evenings cleaning toilets and mopping floors of the Montessori school.

When I worked as a paraeducator from 2002-2004, my hourly wage was $12.07/hour. Not too bad a rate for Olympia, WA, until you consider it was a contract for six hours per day, 189 days per year. That comes to an annual salary of $13,687. despite the fact that the school year only lasts nine months of the year, the salary is prorated over 12 months. This works out to $1140/month. The district makes no contribution towards health care premiums for dependent children, and Sharky was covered on my plan. After that premium, taxes, and union dues, my take home pay was $740/month. That's less than $9000/year.

The idea, I suppose, is that while collecting a paycheck in the summer, you still have time to work another full time job, doubling your pay and storing up cash to last the winter. However, what summer jobs are out there that really pay so much as to make this scenario a reality? I worked the summer of 2003 at an inpatient drug rehab clinic for adolescents. It paid $10/hour. I also worked fill-in shifts for an agency providing home support to adults with disabilities, and made $8.65/hour. When the school year started, I hadn't saved any money, and had to keep all three jobs. I'd get up at 6am, be at the school by 7:30, work until 2:30, drive to the rehab clinic, work there from 3:00 to 11:30. I'd get home at midnight, go to bed, wake up 5 or 6 hours later, then do it again.

On weekends, I'd wake up at 4am, drive 20 minutes to Sharky's mom's apartment, slip into her bed as she slipped out of it without waking Sharky. She'd go to work and I'd stay with Sharky until about noon when she'd get home from work. Then I'd drive home, try to nap for an hour, then go to work at the home care job. This lifestyle lasted a couple of months before my health fell apart, I came down with pneumonia, and quit all three jobs unceremoniously.

How school districts manage to fill these paraeducator positions remains a mystery to me.

But hold on, the title of this post is "good things," correct? Let's reset...

Sharky is thriving in his new school environment. He is in an inclusion program, spending the majority of the day with the general education kindergarten. His academic skills have skyrocketed and are "approaching standard" in most areas.

More importantly, he is gaining in confidence in being social with people of all shapes and sizes. He stops and chats with neighbors, approaches children at the playground and engages them in play. He greets and interacts with people's dogs, an animal he used to become panic-stricken at the sight of. Yesterday we went for a walk to the playground in the snow, and he spent half an hour with a young couple and their dogs, taking turns throwing squeeky toys to them. As we pull out of the school parking lot after school, Sharky often rolls his window down to call out to various friends. They invariably look up at the sound of his call, smile from ear to ear, wave enthusiastically, and say "see you later Sharky!"

At the midpoint of the the school semester, the teachers gave each student a "survey" and asked several questions about how the year was going for them. One of the questions asked what student you would like to get to know better. Apparently, the majority of the students in the class responded to this question with "Sharky."

Sharky had his first school music concert a couple of weeks ago. He took to the stage with considerable aplomb. I could see from watching his lips he was a pretty unsure of the words, but he definitely knew the tune. And not only that, he apparently had either worked out or improvised some intricate hand gestures and movements to the songs. Not a trace of fear at being up on stage under bright lights crept in. He did manage to immediately spot me among the crowd of hundreds, which made for lots of great photos...

We just received Sharky's report card from the first semester, which included a narrative report in addition to the number grades. Some excerpts:

"Sharky is a kind, confident, and cheerful member of the class. He is having a wonderful start to his kindergarten year in the Montessori environment. His kindness and love of learning is appreciated and recognized by both his classmates and teachers...Sharky has many friends and is always able to make his classmates smile. I really enjoy having Sharky in our class."

I suppose this sort of praise is music to any parent's ears, but I also believe it is made all the more rewarding given what Sharky has been through. He is described as confident - the boy who had to be pulled from day care after a month because he was spending the entire three hour sessions standing at the doorway, crying, waiting for one of us to arrive and take him home. He is cheerful - the boy whose emotional outbursts were so severe it brought on a call to the police from a neighbor, as was famously documented in the Seattle PI. He is praised for kindness and love of learning - the boy who, when finding himself unable to follow what was going on during preschool circle time, would take to kicking the children around him for stimulation. He has many friends - a child who, like so many children with Autism, has mostly led a life of isolation, brought on by the lack of daycares, school programs, and social groups that could or would accommodate his behavior.

When he was two, he'd be playing happily, then suddenly pause, stare off into space, and then drop to the ground...screaming. Blood-curdling screams. Nothing seemed to help, and most attempts to help only seemed to inflame the hysteria. Eventually, something such as placing him in a stroller and going for a walk might bring a sudden end to the outburst, even though attempts to do the same thing moments earlier had been met with kicking and increased screaming.

When he was three, he would go to sleep at night, then wake up 2-3 hours later, screaming. The only thing that ever calmed him down was getting in the car and driving. We'd drive around for hours, between the hours of midnight and 4 in the morning. Then we'd go home, and as soon as we got out of the car the screams began again. This time, however, the attack would be slowly placated by a Winnie the Pooh movie, which we'd watch as the sun came up.

To have witnessed these attacks is to know that Sharky has been through a form of hell few of us have, or can even imagine. And out of this fire has emerged a child of such sweet disposition that he charms everyone he encounters almost immediately. And I believe people subconsciously pick up on the wisdom of experience he bears, despite being just six years old.

Some Christmas Recollections, Good and Bad

In 2005, Sharky was three. We went to my mother's apartment for the occasion. She brought my father home from the nursing home to spend the day with us, only to find the elevator to her building was non-functioning due to a power outage caused by a storm. She only lived on the second floor, but given my father's confinement to a wheelchair, that flight of stairs seemed more than daunting. After some discussion, we decided my mother and I would try to assist him in walking the stairs.

We were worried that Sharky might get underfoot. or somehow distract my attention from the task of helping my father up the stairs. Yet when we started up the stairs, Sharky immediately recognized the seriousness of the situation, and perched himself a few steps up the stairwell. He looked directly into my father's face, gestured towards him, and said, "it's OK grandpa, you can do it, you can do it..." And as we started up the stairs, Sharky backed his way up ahead of us, maintaining a solid distance, still gesturing, "just slow down, slow down, easy, easy, you can do it, almost there grandpa, that's it, that's it."

When we reached the top, we placed my father into the plastic chair we'd moved to the stairwell, and scurried back down to fetch his wheelchair. As I was walking down, I turned and looked up the stairs just in time to see Sharky pat grandpa on the shoulder and say, "you did it buddy! Good job! Give me five! Yayyyy!' He then gave grandpa a hug. To this day, recalling this moment will bring tears to grandpa's eyes...every time.

In 2006, Sharky was four and in the throes of deep anxiety over toilet training. He was peeing in the toilet, but refused to poop. And when we stopped allowing him to wear diapers, figuring he'd then have no choice but to use the toilet, he dug in his heels and just didn't poop...ever...for a month.

It all came to a head on Christmas day. Sharky was fussy, angry, and having multiple outbursts. Then in the late afternoon he curled up into a ball and winced with pain in his abdomen. He wouldn't move. Christmas dinner was served, and the rest of the family ate while Sharky and I lay in bed.

When he started crying from the pain, it was obviously time to go to the hospital. I quickly packed our things, called the moms to tell them what was happening, and we left for the ferry from Bainbridge to Seattle. I told the ferry workers I had a sick child I was taking to the hospital, and they cleared things out for us to be the first off the boat. They also fetched an EMT who happened to be on the ferry, but he said there was nothing he could do here, we'd just have to wait until we got to the hospital. I found a seat on the ferry and Sharky laid silently, in the fetal position, in my lap the whole way over. He didn't look upset, or scared. He seemed merely resigned to his fate.

We had a very quiet, traffic-free drive from the ferry terminal to Children's Hospital. Upon examination there, we were informed that he had withheld his stool to such an extent that the rectum was severely dilated. This had caused impaction to the point that even if he wanted to at this point, he wouldn't be able to have a bowel movement without the assistance of an enema.

We parents pinned Sharky to the table while the doctor inserted the tube into his rectum. There was incredible screaming, screaming like I've never heard. Screaming as if i might imagine when an exorcism is taking place. After the enema was done, we waited. Nothing happened. So after an hour, we did it again. An hour after that, still nothing, so repeat the process. Through it all was the screaming.

When still nothing occurred, they sent us home with some home enema kits and instructions on how to do it at home. I took Sharky home with me that night, and we stopped at a Bartell's Drug Store. I still wonder what we must have looked like to the employees and fellow shoppers there that night - 11pm on Christmas night, buying miralax and prune juice for Sharky and a bottle of cheap wine for me, both of us ravaged to our cores, Sharky still wearing his emergency room bracelet.

The next day Stormy and I held him down multiple times while Lillie inserted the tube and poured in the oil. Eventually, after several more rounds, the dam broke.

And now in 2008, we have happy school concerts and glowing report cards for the holidays. But through each of these experiences, the song for me has remained the same: no regrets, no wishes for things to be different than they are, just gratitude to have this child, this person, this soul in our lives.

I am so, so blessed.


Claire Thompson said...

Ted, I've enjoyed reading your blog and I hope you don't mind but I nominated you for a Pop-Tastic Award ( The idea is to highlight great bloggers who aren't on the top of the Technorati list. I hope that by nominating your blog, more educators (the majority of my blog's audience)will have a sense of what it is like for children on the autism spectrum and their families. As an educator, the process of getting a diagnosis and support for my own son, who has Asperger's, has definitely influenced my understanding of students with mental health issues. I also have a heck of a lot more compassion for their parents.

ted said...

I don't mind at all Claire! Thanks very much, that's very exciting. Best to you and your son.

Jen said...

I'm so happy to see you posting again! Your blog is extraordinarily eloquent, and quite inspiring to read.
Happy New Year from a fellow Bagley Bee!