Coming into one's own.

Flashback two years. We are hopeful, but wary. Our son sits quietly with us in an interview we've set up with a new school. We've spoken with the admissions counselor and now it's Nathan's turn to speak...

Nathan was diagnosed with autism spectrum disorder at the age of three. Our effort to ensure his education within our local school system was a six year battle that culminated into one awful moment for our son.
Just a few weeks prior to the aforementioned interview, Nathan was so overcome with stress and anxiety that he became literally paralyzed while walking between classes at school and actually got "stuck" in a hallway. He couldn't move from the spot where he was standing. I was telephoned by the school and promptly asked to "please come get him." Just typing the words attached to this bitter memory brings tears to my eyes.
When I found him, he said simply, "I need to go to computer lab, but I'm too nervous." He was softly tapping his head against the wall.
"Let's go home now," I said.
"I can't go home. I need to go to computer lab."
"It's alright, we can go home now."
"My head's bothering me," he said. I took his hand and held it as we walked out of the school. I don't think I said even a single word to anyone as we left. Seeing Nathan in that state--- I can hardly explain. I was terrified that in an instant, we'd somehow lost him or at the very least, lost a significant part of him; that he might not be able to come back from the place he was in. There was nothing left to say or do, but to leave... And never go back.


The admissions counselor is courteous and very direct, "Nathan, what's the thing you liked least about your old school?"
Response: "I'm just tired of wrong answers."


My dear sweet boy, I could never have put it as eloquently.

You were two years old and you weren't yet talking. After a battery of tests and evaluations, seeing one specialist and then another and another, navigating an unnerving and bewildering course through Children's Hospital, we were finally told that the collective answer to the question was this: mental retardation. Even ten years ago, the term sounded more like an antiquated label than an actual medical diagnosis.
Regardless, it was the first wrong answer.

The summer before first grade, we were very encouraged. Almost two years earlier, two champions came to your rescue. They were your autism behavior consultants, Dr. Kathy and Dr. Liz. We owe so much of your success to their expertise and devotion. Not only did they design home programs for you to learn the nuances of social interaction, they designed school programs and pro-actively trained your educators to implement accommodations that would help you to be successful in the classroom. The services your school provided were meager and the supplemental training we provided for school faculty was an expensive and difficult thing for us to coordinate, but we were hopeful that you would benefit. We became less and less encouraged though as we witnessed educator after educator happily accept the training and ABA credentials we facilitated and paid for, add them to their resumes and then promptly leave or transfer to another school without you ever having benefited.
Another wrong answer.

We weren't alone in our struggles. We knew several other families who'd suffered similar or worse experiences. We were advised to sue the school district in order to get the accommodations you were entitled to by law. Your school made a joke of our good faith efforts, but we chose not to become litigious. Mainly because a due process law suit would only serve to take up valuable time and resources, neither of which we could afford to forfeit. Still we were unable to avoid coming to the sad realization that the accommodations we had worked so hard to put in place for you at school were not being implemented. We knew because we would receive frequent phone calls from the school asking us to come and pick you up because you were upset. All the while, you told us, "I just want to be like other kids. I don't want to leave class." I decided to volunteer as much as I could at your school, to help everyone understand that your needs were not complicated. I helped the school with many things in many volunteer positions, but sadly, nobody would help you. On one occasion, the principal of your school flat out refused to require your teacher to implement a very simple classroom accommodation for you, a visual calendar of events for the day (something that would actually benefit all the kids in the class.) Her response to me, (in practiced patronizing tone reserved for overbearing parents in denial) "Kathy, you really cannot expect us to grant every request every parent makes, that would be impossible. Sorry, the answer is no."

We limited your class time and you continued to work very hard, 3 and 4 days a week in your behavior therapy and tutoring at home. You wanted so badly to do a good job in therapy so you could prepare yourself to do a good job at school, too.

Even though verbal instruction was almost impossible for you to process, you were always exceedingly quick to learn given visual or written reference. Unfortunately at school, you were shuffled back and forth between several "specialist" classrooms for the few hours you were there, but you were still required to complete the work assigned in your regular classroom even though you weren't present to receive instruction--- all of which caused you a great deal of stress.

You needed only a few small, simple things
to prevent confusion, frustration or misunderstanding.
Small strategies consistently placed:

A simple, written schedule to indicate a date change or time change.
No need to be upset that the school assembly's been cancelled.
Here's the new date, here on your schedule for you to see.
Because your greatest strengths are your visual ones.
You taught yourself how to decode numbers and symbols at the age of two
but right now,
you cannot process the auditory information you're receiving:
Your teacher's telling you that the assembly has been cancelled.
You cry and scream.
There was no warning for you.
No written schedule to show a date change, time change, an assembly re-scheduled.

Small strategies consistently placed.
Your teacher's aide is asked to escort you out of the classroom.
I'm asked to pick you up from school.
But you don't want to leave. You tell me you're sorry for breaking the rules.
My heart breaks for you.
It's not your fault.
It will be okay...

But the next day when you return,
you are disoriented
because you realize you've missed the instruction to the science project and now
you don't know what to do.

Again...
no one bothered
to give you any of the written instruction we'd worked so hard
to facilitate for you.
You take the science quiz and give

all the wrong answers.
You cry and scream and

Again...
I come to pick you up from school.
And one school year turns into the next, and the next.
Then one awful day,

I found you "stuck"
in a school hallway, unable to move.
I wanted to cry and scream. There were no words to speak.

I'm so sorry, my dear sweet boy.

All the wrong answers.


Flash forward to this morning, 10:45AM: back from taking my sixth grader to school. How restorative these past two years have been at his current school. He attends 3 days a week. He studies 10 different subjects that range from theatre arts, to Spanish,
to botany. All subjects of his own choosing. He receives most of his instruction one-on-one, with all the visual support he needs. His classmates include a range of students with varying degrees of challenge and ability. There is a nine year old boy who like our son, enjoys Lego. Unlike our son, he'll be attending college in three years. Among some of the others, a sixteen year old professional jazz musician, an equestrian and downhill skier training for the Olympics, and a sweet little girl with Aspergers syndrome who thinks my son is cute.
My son is respected for his abilities and his weaknesses are no longer sought to be remediated. Instead, his natural abilities and interests in art and science are focused upon and cultivated.
Finally, the right answer.
Nathan has grown into a happy, optimistic young man. He's no longer a child defined by a disorder, 'the autistic boy.' He's a boy with autism--- who endears his family and makes them laugh often with his particular insights and sense of humor. There are still days when he begrudges and laments his disorder. "I'm sick of having autism," he'll say. As his parents, we understand that there are many challenges he's yet to face. But the difficult part is over. Because he now knows his own self-worth, and he didn't before. And we are so blessed to see him come to it.