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The Weight of 'Minutes' When Your Child Has a Disability

Minutes become painfully aware to parents of children with disabilities.

For us, it started at birth.

Living minute by minute when our presumably perfect baby couldn’t eat. In those days we were living minute by minute … expecting, hoping, fearing … something would give, something would change, at any minute.

We made it through those minutes only to be met with counting down minutes while our sweet little girl endured another test or procedure.

There is some sort of cosmic shift in your perspective of time after you turn down the “other” hallway while your child is wheeled down the opposite one toward an operating room. Minutes feel like hours when you watch your child’s ID on the screen waiting for an update. Minutes become unbearable when you have to hold your scared child down for yet another set of labs not knowing yourself what will be on the other side of those tests.

Then came the minutes of therapy our insurance would cover, or more importantly, minutes they would not cover. The difference between walking or not, and talking or not, suddenly became dependent on these minutes. During this time, our days were desperately built around these momentous minutes.

Now, our lives are focused on “IEP minutes.” IEPs designate how many minutes of special education services a child will receive at school. When our daughter first began public education we viewed these minutes as the ultimate “answer” to her challenges. Our daughter has complex needs and she receives several services. So in our minds, Minutes = Gold. The more she had the better off she would be!

As I am sure anyone can imagine … with schools taking measures to protect their students and staff from the enduring COVID-19 pandemic, students who receive special education services have been affected. Special education “minutes” have been adjusted to align with the total minutes our daughter is in school. This was a scary adjustment. After all, Minutes = Gold, right?

This year our daughter has been physically going to school half of the time she typically would. A few weeks ago I virtually attended a parent-teacher conference and this meeting, coupled with discussions with her therapists, has led me to a much needed “aha moment.”

Our daughter is in a general education classroom for about 15 minutes a day at the very beginning of her day. Going into the conference I didn’t really expect this teacher to have much to say to me or to have really made a connection with H.

The teacher for this class warmly told me how much she enjoys having H in her class. This is something that I am sure every parent expects a teacher to say. She didn’t stop there though … she told me some characteristics of H that were so uniquely her that I couldn’t help but burst out in a huge smile because I knew exactly what she was talking about. Then she said something that I am sure seemed so trivial … but I cannot stop thinking about it.

I asked how H transitions out of the room when she has to leave and the rest of the class stays and carries on with her day. I worried about this because transitions aren’t always easy for her, and they are especially hard when she has to leave a space or activity she enjoys. I can’t even remember the initial response but it was something typical. Then she said ,“You know, in my classroom I am big on pushing in your chair when you get up. Sometimes H forgets, and I will remind her that she needs to come back and push it in.” The teacher smiled and said she always comes back, she will sometimes sigh like a teenager and say, “OKKK,” but she walks back and pushes it in before she leaves.”

In our experience so far, general education classrooms have been a little bit of a perplexity for us. She has been in them, but at the very same time, not in them. We have fought for a seat, but then also found that very same seat to be a source of anguish. Her “special” needs seemed to be creating this bubble around her that made her untouchable in a way that barred her from truly being seen as another student in the class. This conversation, though, left me feeling like this was changing.

Her special education teacher has been in contact with me since the beginning of the year. Even though she only sees H for a fraction of the school day, she has taken time to figure out exactly where she is at and made specific and meaningful plans to help her grow. During the meeting we talked about her progress and plans for growth. It was evident that H was being seen and valued.

Fast forward a couple of weeks and I got an email from one of her therapists who stated she saw an immense growth in her maturity this semester. My husband and I both noticed the same exact thing. In addition, we have noticed some stellar growth in other areas as well.

Her minutes have nearly been cut in half, yet we are seeing some amazing progress!

Turns out … these minutes that we have been setting up on a pedestal were not the ultimate prize.

So here we are. Done with focusing on minutes and now zeroing in on the quality of the minutes.

Minutes will not determine this outcome.

It is the intentional planning and willful mindset that will make the difference.

When you held my child to an attainable expectation, like pushing in her chair, you helped her mature and grow. This may seem like the smallest of actions, yet the mindset behind this is the one of the biggest factors in creating inclusive environments that help everyone in that room grow.

When you spend even one minute of sincere, meaningful, and honest interaction with my child you are reinforcing to her, and those watching, that she matters. Simply “being” in a classroom even for hours at a time does not necessarily convey that same sentiment.

When you let age-based academic standards take a back seat and put my child’s needs front and center, you are validating her at a very basic human level and giving her the best chance at success.

When you recognize that time spent just going through the motions and service-time designated on a document does not amount to progress, you are truly affording my child an education.

This year, if nothing else, has given us a new and welcomed perspective on “minutes.”

Image Credits: Brie Oest-Rader

Photo submitted by contributor.