Decision Day

Ethan's first day of preschool, 2010

Most of the advice out there was "don't do it."

But here we were, sitting around the table in the school's conference room, ready to sign off. Ethan, at age 8, was about to be officially discharged from special education and signed on to a 504 plan. What does that mean, exactly? Both are designed so that a student with a disability has access to a free and appropriate public education comparable to the education available to their non-disabled peers. A child with a 504 plan does not need specialized instruction but some accommodations due to his or her disability.

This sounds like a great goal, but many argue that letting go of special education, of having an Individual Education Plan (IEP), can be doing your child a disservice. An IEP is a legal document, whereas a 504 is harder to legally enforce. The process for making accommodations is a little murkier, without measurable goals, and if your child ends up really struggling and has a need to go back to special ed., it can be a struggle to prove he qualifies for services.

We knew all of this. I've read books, talked to friends in the know, poked around on the internet, and even spoken several times with people from a local Parent Advocacy Center. Nearly everyone said: Tread carefully. Argue to keep him in special ed. Require the school to perform evaluations, or even better, argue for them to pay for an outside evaluation. Don't jump into this.

It's a very strange thing, to argue that your child has a significant enough disability that they should be allowed in special education. It's a weird feeling, when the school is telling you your child is performing like a rock star, and of course you want to hear he is performing like a rock star, but you know most of all you have to look out for your child's needs, and if that means admitting he has a disability that requires specialized instruction, then forget my needs and hopes and dreams -- it's about him, first and foremost.

This is how it went over a year ago, when this issue first came up. The school staff started murmuring about switching Ethan to a 504 plan, and Mama Bear reared up. At the time he was early in first grade. I felt rushed. I felt as if the school wanted to jump the gun for numerous reasons. And while at that time they backed down and continued him in special ed., something the principal said in a meeting leaped out at me. I had been talking about how I knew Ethan was doing very well, but that I was more concerned about how things would go later on, as the work became more challenging and more was demanded of him. She answered that they couldn't keep him in special ed. based soley on what might happen down the road at some unforeseen date.

Some parents might have been really annoyed by this. Someone might say to me, "Your child has a diagnosis of classic autism. By the nature of that diagnosis it's natural to assume he might run into some significant challenges in particularly middle and high-school, when so much will be asked of him." And that would be true.

But what jumped into my mind, when the principal made that statement, is that with Ethan, I have always been planning for worst-case scenarios. Ever since we walked into his first IEP meeting, and I thought he would be starting preschool in a regular classroom with some supports, and instead was blind-sided to learn they wanted to start him in a self-contained classroom, that he wasn't ready to be with typical peers, I swung way the other way. I took every service they offered him (speech, OT, and PT, initially) and asked for more. Before Ethan started kindergarten I argued the he needed a para or at least to share a para. I asked for the social skills group.

And each time, as the years went by, that they suggested a service be discontinued, I pushed back, and I fretted. "The school will do that," everyone warned me. "They will try to offer as little as possible, or push these kids out of a service when they still need it." So I tried not to accept anything at face value, to snatch at the carrot the moment they offered it.

First, he graduated from physical therapy. Today I'd consider Ethan very athletic, despite low muscle tone. He's better at the monkey bars than many kids his age. He loves sports and no longer "trips over everything," as his teachers first observed when he entered preschool.

He shared a paraprofessional when starting kindergarten, but rarely relied on her. Having a classroom para was indeed beneficial, but he didn't need someone sitting next to him, interpreting directions, as I thought he would.

When he was discharged from occupational therapy in first grade, I wondered. To this day, his handwriting is not the greatest. However, when I sit Ethan down and ask him to focus and write, he can write well. Much better than I ever thought he would. I've learned that usually, he's just rushing in school to get on to the "fun" thing. It's not that he doesn't know how to write neatly. And there's not much OT can do to change that. As for the other aspects of OT, such as help with sensory issues, he's never needed them in school. At home he requests "squeezes" a lot to help him focus. But he has not needed to have sensory breaks or anything of that nature.

After years of speech therapy, his speech is at the level of an average second grader. Even his pragmatic speech. While he may be a little less expressive, particularly with non-verbal communication, he can pick up on others' cues, and effectively communicate with his teachers and peers. He has friends. He no longer plays alone on the playground at recess.

Academically he is ahead in most areas. He does extra work in math and reading with a small group of students to be a little more "challenged." He doesn't just memorize facts, but actually understands what he's reading. He's even a good little writer who has come up with some creative stories.

His social skills? Yes, understandably, that's the one area where he still needs some extra help. I'd call it fine-tuning. He WANTS to communicate, hang out with, pay attention to others these days. It's just that sometimes he's a little louder...a little more pushy about the "rules"...a little less able to "infer" things and keep a conversation going. He does need a social skills group, everyone at school agrees.

But needing a social skills group does not mean needing to be in special education. That was the point they've been making for a year, that they were continuing to make as we sat around the table the day before April vacation.

I COULD have argued. I could have demanded another comprehensive evaluation. I could have put my foot down. I could have done more research. I wouldn't have been wrong to do any of those things.

But, after talking with Dan, and sitting there and listening and looking through the reports and updates, I knew.

This time, it was time to believe in Ethan the way everyone else has always believed in him. To not expect the worst but to let him surprise us. To not argue for services he doesn't really need right now, and to not having him using up limited resources when there are kids truly struggling who desperately need them. When you have a brother who has severe autism, you know what need is.

Our job will always be to be vigilant. If time goes by and Ethan ends up struggling, you better believe we will do everything in our power to argue him back into special ed.

But that is for another time. Not today. Today, Ethan has been discharged from special education. And as we tidied up our papers and concluded the meeting, I decided not to worry about tomorrow at that moment. This moment was for celebrating. And for thanking, at least in my head, all of the people who have helped him learn and grow and get to where we are right now.