The Connection Between Cereal, Special Education and the COVID-19 Pandemic

At a district committee meeting recently, I told a small group that I wished there was more transparency and discussions district-wide regarding how the special education department was planning for, and serving, students during this COVID-19 era. Another member gasped and said, “Oh I am so surprised you are saying that because I feel like the district is working very hard to ensure special education students are not losing anything.”

I acknowledged that statement and said, “Yes, I think that is true as well. However, this is not something that is shared at macro level within the community which puts parents of children with disabilities at a disadvantage. And more importantly, because of the legality of special education, these behind-the-scenes discussions often revolve around how to ensure legal compliance, not how to ensure the best education possible is being provided for each student.”

The start of this school year was really tough for us, but honestly every school year is when you are the parent of a child with a disability. Initially, we chose remote learning for our daughter. This meant that the minutes of special education services she received were altered … I signed off on that. We changed our minds and decided to do a hybrid model at the last minute (her minutes changed again) and once again we signed off on that.

Did I have much information to base these decisions off of? No. Are these special education minutes the same as she would be receiving if she were attending a full school day? No. Did my husband and I legally agree to the changes in her education? Yes. Did we really have other choices? Not sure. Does this mean everything is hunky-dory … Yes, no, maybe so …who knows?!

Have I now heard of how other schools, families, therapists are responding to COVID-19 and wish we had created a better plan? Kind of …

Things like this happen all the time in special education. I feel tormented by the weight of the decisions that I must make because of the lack of information and transparency which holds us all back from creating plans that truly are best for our daughter.

I was running the other day thinking about this whole dynamic in my head and this is what came to mind —Maybe I was hungry =)

Let’s say … I love cereal.

I told the gatekeepers of cereal how much I love it and how much I want it for my daughter. Those gatekeepers cheerfully told me “Yes, yes, you can have cereal! Look through this little window here, see… cereal!” I see with my own eyes and reply, “Great!”

I say again, cereal is so important to us and this is a top priority. They agree and we all leave optimistic of this wondrous forthcoming cereal.

Cereal day comes. After some experience with this cereal I realize this is not the cereal I had imagined.

After asking the gatekeepers of the cereal about this they reply with, “Of course this is cereal!” I explain that I wanted a full bowl of cereal … with milk … and a spoon just like everyone else around me has.

They say, “Well, the spoon wasn’t negotiated and it probably wouldn’t even be useful anyway, and although you may have imagined your cereal with milk … we never said milk. We also did not specify the container the cereal would be delivered in, and we have always used a strainer so milk couldn’t possibly be given in that.

We said you would get cereal, so why are you complaining when you agreed to cereal!?”

Parents of children with disabilities are gaslighted every. single. day. I do not say this in an “us versus them” way. I say this because sometimes I personally do not even know of what to ask for or where to set the bar until I hear of another school doing it, or a friend who tells me they got what they deserved because they asked for something I was too afraid to ask for.

So often, parents of children with disabilities don’t even know what to ask for and are offered choices which require them to trade or give up something.

For the benefit of our children and our society we need more transparency in the field of special education as it pertains to parents. It is really difficult to explain to those who have not experienced it. But, it is not OK when the education of children with disabilities is glazed over or presented as an “other” category within a district!

When this happens, voices are silenced.

When our children are treated as an exception, we then as parents are poised to believe that we should be grateful for anything we are offered. When our children’s programs are not explicitly stated as an important component of the district plans to the entire community, it is far easier for the community to view the children who participate in these programs as “other” rather than an integral component to our school and community.

Please listen to those who are experiencing this. Schools should also give voice to those who are experiencing these services to strengthen them and their community as a whole.

Besides … one of the first signs that Hadley learned was cereal. The ASL sign for cereal is wiggling your index finger underneath your bottom lip as if you are wiping dripping milk off of your chin.

Everyone deserves milk with their cereal <3