I am the parent of not one but two neurodivergent children. Like most parents in my shoes, we have joined all the Facebook and SEPAC groups in hopes of finding community and seeking help. In many ways, it’s like being a part of a voiceless, invisible group not seen by our education system.
I’ve been through this hard, heartbreaking process before, but it hurts no less the second time around with a new child. I did my part as a parent and followed the steps set by my public school system. I raised concerns early on — when my daughter was in 1st grade — and was told my child was fine and maybe only needed a little help to adjust. Trusting the teacher, I felt at ease for a brief moment. A year later, when my daughter was in 2nd grade, I noticed there was no improvement; but again, no one was raising any alarms. Doubts, thoughts of bad parenting, and all the things imaginable started creeping in. I finally decided to formally ask for an evaluation by the school.
The process of meeting with school officials to talk about the evaluation was soul crushing. It’s as though we were watching a child drown, but no one was willing to help me save her.
Her evaluation came back borderline below average, and she did not meet the criteria to be on a plan under the individualized education program (IEP). I shed lots of tears because I knew this was wrong.
So I persisted — we moved forward and requested a formal neuropsychological evaluation, paid for by the school via an IEE (independent educational evaluation). Many neuropsych exams are paid for out of pocket, so it may sound ideal to have the school system cover the expense. But let me tell you, this battle was harder than the previous one. Getting someone to accept the state rate of payment for the evaluation is incredibly hard. I called various places just to be turned down. We waited nine months to get an evaluation. Another school year passed, and my child was still not receiving adequate help.
The results of the neuropsych exam showed my mother’s intuition was spot on: My daughter was diagnosed with a nonverbal learning disability, a math disability, and a reading comprehension disability, along with selective mutism. With these diagnoses in hand, I felt armed with the power I’d need to get my daughter the help she so needed and deserved.
Yet, once again, I found myself fighting with my school district and not getting her an adequate IEP. We were not approved for math services because the testing the school had done a year earlier disproved her neuropsych exam. She was offered the bare minimum for reading assistance. And I had to argue to get her summer help via an extended school year. Why did I have to fight to get my kid into summer school?!
The special education program put in place to serve students is failing our kids. The things we parents go through to try to get help for our children is unnecessary and atrocious. Why is our public school system doing this to these families? Is it funding? Is it a lack of resources? Is it low academic expectations? I honestly don’t know, and having gone through this twice it feels that things are getting worse. What can we do to change the system?
It takes a village to raise a child, and I feel that my school village has failed me — twice — in regard to our special education needs. I know I am not alone, but that does not make me feel better. Instead, it amplifies the problem and makes me feel worse! And what do we do for the children who don’t have parents advocating for them? This mama bear will not stop fighting, and I take heart in knowing some others are doing the same. Maybe if enough of us advocate for our children’s needs, change will come.