The Box

As I thumb through the sea of high school graduation photos in my newsfeed I see all of the shiny, happy faces proudly holding their diplomas, and I can’t help but be reminded of the box we had to check a couple of weeks ago. In the middle of a season of celebration we’ve been grappling with a choice that most parents aren’t faced with at this point.

If you know and love a special needs family you’ve probably heard them groan about IEP meetings. And there’s reason for that. Though the intention of these little get togethers with the school system are to touch base as a team to develop goals, evaluate progress and make decisions, they often end up being an opportunity for intimidation and a power struggle further punctuating the special needs life with an emotional pummeling.

We had ours last month. Mark is finishing pre-k and so this meeting was intended to determine where he will go to kindergarten, but we knew that ultimately we would have to decide whether or not he will pursue a high school diploma. He just turned five and we are tasked with deciphering if he will be capable of earning one. In our county, in our state, this is the decision and this is when it happens.

I didn’t realize what I was choosing until it finally clicked during the winter when I made the seemingly unusual request to visit schools in the county to see the kindergarten programming options available.

According to IDEA, the LRE, Least Restrictive Environment, Mark’s home school, where he is districted to go, must first be considered. We visited. We talked with the principal and after several factors, determined that this was not the best fit.

We visited a school that had an autism program that would allow children the opportunity to pursue a high school diploma but with extra supports. Hearing that this existed I had determined that this would be our plan all along, but once again we ruled this out once we visited. As Ike and I peered into the classrooms we could see that children in this program were sent into regular classrooms with minimal support, and we realized that Mark would not be capable of doing that or being assessed like the other children. This felt like a giant leap.

So the next program we considered was a Life Skills class. This is where children with special needs are in a self-contained classroom with a special educator and typically two to three paraprofessionals tasked with helping the children attend to the tasks in the classroom and work individually. It’s a very supportive environment that, in addition to an academic curriculum, allows children the opportunity to work toward non academic goals like self care, at their own pace without being required to take state administered assessments. This program would lead students down the path to a certificate of attendance, not a diploma. We toured two schools that had these programs and felt that this would most likely be the place that would best support Mark.

The administration and staff reassured us multiple times that every year the choice to pursue a certificate or diploma would be revisited making the decision seem less final. This eased my mind and allowed me to feel comfortable with our mental choice of Life Skills, and then it hit me.

If a child starts out in a Life Skills program not following regular kindergarten curriculum, the challenge to switch over to the pursuit of a high school diploma in the future becomes an uphill battle. Once that departure happens the odds of an already developmentally delayed student kicking it into high gear and making up lost ground seem quite slim. This was confirmed when we visited one of the Life Skills classrooms and I posed a question to the staff about how often they’ve seen a switch from certificate to diploma and the answer was not many, if any at all.

The potential lack of diploma is an element that comes into play with my job, making the decision that much more layered, which gave me even more reason to pause.

My job as a college disability advisor has allowed me the chance to meet with students with varying diagnoses, including autism.

I’ve spoken with the parents of my students with autism and they have shared their paths with me. They chose to mainstream their children because these specialized programs didn’t exist. They pushed their children in with regular kids and though it was challenging their children met the requirements with the appropriate classroom support. They made a ton of progress, and the body of research supports this choice. Children with special needs, given the opportunity to be exposed and learn alongside their peers without special needs are more successful compared to those in self contained classrooms.

At work in April we showed the film “Deej”, the story of a nonverbal student with autism who not only graduated from high school with his diploma but went on to earn his college degree. Watching this documentary that showed a boy with no expressive language, with vocal stims, ticks and obvious motor challenges opened my eyes to the enormous potential of students with autism. Deej learned to communicate with assistive technology that provided him the ability to express through selecting letters. He showed teachers that he could learn, he could read and that he was an incredibly intelligent, articulate person.

Upon seeing the film, I was inspired. I purchased it for Ike watch. I purchased it for a fellow autism Mom to watch. And then I emailed the film producer asking additional questions. How did his parents know he could read? How did they find the right assistive technology to help him unlock his expressive abilities? When? How long? All the questions. The producer emailed me back promptly and copied Deej, explaining that he would be the best person to respond to my barrage of questions. So Deej and I have emailing back and forth. Like my other students with autism, he was mainstreamed, and with special support, he accessed the curriculum and demonstrated that he was not only capable of achieving a diploma but accepted into his first choice college.

Between my nonverbal email pen pal, parents of my students, teachers and service providers, and the IEP team amassed to help influence this big decision, we felt really torn.

If someone would have asked us six months ago if we thought Mark was capable of the rigor of general education, I would have said no, but within the last six months Mark has surprised us. He’s blurting out sentences, identifying numbers, performing tasks and following basic directions, but there’s still so much he can’t do, and so far he still has to go.

Ike wisely pointed out, we have to choose what’s best for him right now, with the information we are given and not focus so much on where he may or may not be in 13 years.

So here we are. The box has been checked. He’s off to Kindergarten in the fall, Life Skills, certificate track. As I type out these thoughts on my phone, I’m watching him make sure all of the doors are open in the LEGO structures that Jillian has built. He’s still obsessed with doors, ensuring that they are all left wide open. Ironically, that’s the very thing I’m trying to do; leave the door open for potential, possibility, and the chance to be one of those happy faces holding a diploma. And perhaps he’ll surprise us, like he often does.