One of the first rules I learned about special needs parenting was, Don’t compare Benjamin to anyone other than Benjamin. I had to learn this lesson again after Sebastian was diagnosed on the autistic spectrum. For the most part, I’m pretty good at staying positive, and finding small but significant joys in my day to day life.
But every three years, for a brief period of time I break down.
When your child receives special education services the school team comes together, at least once a year, to review your child’s progress and updates the Individualized Education Program. Together you agree on things like what type of class placement is appropriate, related services, educational goals, and any modifications and accommodations your child needs.
Every three years, your child’s team conducts a series of formal evaluations.
This year we had Sebastian’s triennial reevaluation IEP meeting. Ten days before the meeting, Sebastian’s case manager sent me the results of his Psychological, Speech, Occupational, and Educational Evaluations.
I HATE TRIENNIAL EVALUATION REPORTS because formal evaluations compare your child to everyone else and therefore breaks an important rule of special needs parenting.
So here’s how it goes. On the first reading of the reports I am consumed with all of Sebastian’s deficits. The numbers are a blur of depressing percentiles and I can hear the voice of my younger self saying, You failed him. You failed another child. His future is dismal and it’s all your fault…This negative thought stream runs full force and breaks every optimistic brick I’ve consciously laid. I never know how long it will take to slow down to a manageable flow so I can kick that pity party mama aside and reread the evaluations with my special educator hat on.
During the second read, I think about Sebastian’s weaknesses and try to figure out how they will affect his day to day at school. I note Sebastian’s strengths and think about how they can support his challenges. I think about what John and I observe at home and how it compares with what the school team has reported. I talk to the evaluators because they know Sebastian better than any standardized assessment.
I knew exactly what to expect when I received Sebastian’s reports this year. Or so I thought.
On the first read, I was disheartened by the test scores, but then I read Sebastian’s responses when the psychologist asked him to list three wishes. Sebastian wished:
1. Not to be autistic so he could learn better and not feel as though he’s not normal
2. To be popular so everyone would get to know him
3. That there actually is a heaven
The psychologist spoke with Sebastian a bit about these wishes and he assured her that he doesn’t worry about being autistic often, enjoys a strong sense of family support and a general positive outlook. I was grateful she probed Sebastian for clarification, but my heart was still crushed.
I find myself saying this a lot lately – going through the process of accepting Sebastian’s disability was difficult, but watching him go through his own process of acceptance is worse.
I pity partied hard. All the while, I wondered how long it would take to get past this part of the triennial breakdown process and reminded myself that I would.
When I did sit down to reread the reports, I decided to dig out Sebastian’s previous triennial evaluation. Three years ago his percentile scores were equally depressing, but when the school psychologist asked him what his three wishes would be, he answered, “a toy, book, and a movie.”
Standardized tests don’t appreciate the tremendous leap from “a toy, book, and a movie,” to “Not to be autistic, to be popular, and that there actually is a heaven.”
But I do. And I’ll keep working to make sure Sebastian does too.