Testing, Testing, 1,2,3 - Is this thing on?

As things got worse at school in 3rd grade, I eagerly agreed to have my son tested. I was desperate for answers, hoping they would lead to solutions. Working in the field, I was not worried about labels, bias, and discrimination. Labels are the path to treatment – a necessary part of receiving system support. This was not as easy for my husband. He worried like many parents do, that a label would define our son and follow him for life. Being the one who answered the school emails and calls and went to every meeting, I didn’t care what it would take to correct the course for our son. He was hurting and so was I and we needed relief. The word “label” may have a negative connotation, but it was also the path to services.

Many people know that the educational testing process is scaffolded by a series of deadlines that must be met according to federal law. In theory this structure exists to help ensure testing is completed in a timely manner so that plans can be put in place and students are not allowed to fall further behind. That is not how the process unfolded for us.

We agreed to a battery of tests (academic, social emotional, ADHD and Autism rating scales, Emotion Dysregulation measures, etc.), completed every form right away, and waited for the follow up meeting with the school’s MET (Multidisciplinary Educational Team) to learn the results. On a Friday afternoon, in advance of the follow up meeting the next Tuesday, I received the report. I was floored to learn that the team felt our son is autistic and has an emotional disorder. I jumped into action. I contacted our pediatrician, got an outside referral, and scheduled additional testing to confirm the potential diagnosis and get a support plan in place. Never mind the very expensive out of pocket cost I was quoted, I spent the weekend reeling again with guilt, worry, and shame. I stayed in crying and learning all I could about what might lie ahead for us. Apart from my old pal fear, I felt very much alone again.

When I went to the MET meeting the following week, I was handed a new report. The lead member explained, not apologetically, that the speech and language therapist had just completed her testing the day before. The team began to debate the possibility of autism in front of me, asking each other if that could be right given his communication skills and scores from the speech and language therapist recorded one day prior. They were debating DSM criteria in front of me. As if that weren’t shocking enough, I was stunned that they would send an incomplete, inaccurate report - that sent my family reeling - with such seeming indifference. Again, without apology, followed a diatribe of excuses about turnover and staff illness that had made the testing process challenging for the school for THE SCHOOL!

Prior to that meeting, I reviewed the 38-page report to make notes and prepare my questions. I noted that they had forgotten to screen for ADHD, and I saw no sign of a report that asked my son directly how he was feeling. Doesn’t he have a voice in this? When I brought this up, I got more excuses about challenges faced by the school during the time allocated by federal guidelines for the testing process. They said they had missed the ADHD testing and asked me to come in for another meeting once it was completed – but before the federal timeline expired. Don’t worry, they assured me, none of this affected the validity of his scores. I also found our last name spelled wrong throughout, my son’s name spelled wrong numerous times, and documentation of scores presented in a way that pitted his teacher and me against each other. I used to work there. Can’t you spell our name correctly? Ugh. This did not inspire confidence in the testing.

The morning of the next meeting arrived without us receiving an updated report.  At the school, I was greeted by the MET lead, and asked if I had read the report. I checked my email to find it had been sent 20 minutes prior to the meeting – when I was in my car. When I replied to that effect, the lead casually said, “Yah, I just got it a little while ago myself.” First of all, what?!? How could you not have reviewed the report prior to our meeting? Secondly, how could I (or any parent) review a 38-page report and prepare for an important meeting about their child’s support plan with no advance notice? The federal guidelines were not doing us any favors at this point.

During the meeting, they said my son most certainly has ADHD with symptomologies of autism and emotional dysregulation that did not qualify as clinical. They also recommended an Occupational Therapist assessment for handwriting. They shared what supports they could offer and asked if I wanted to move forward with a 504 Plan or an I.E.P. explaining that a 504 Plan did not include individualized instruction which he didn’t seem to need based on his intellectual ratings and academic performance. Meanwhile he wasn’t making it through a full day of school without intervention i.e. being removed from the classroom. I thought having a “team” of experts would come with more guidance on how to proceed. It didn’t.

The report I received that day still had our last name misspelled, my son’s name misspelled, no mention of an assessment reflecting his own feelings or thoughts and appeared to indicate that he qualified as autistic. I felt defeated and unsure about how to move forward with the information they had provided.

I replied with an honest, heartfelt email about our experience to the school’s administration (previous colleagues) and requesting a corrected report again from the MET lead. The only reply I received was from the MET lead. The final report was unchanged except for correcting our names, which I had gone through and highlighted for them and attached to my last email.

That’s not how it’s supposed to go. I wrote that email on behalf of all families, not just my own. I hope it will make a difference.

More to come soon on our journey. Stay tuned!