Wednesday, May 17, 2017

Don't use the R-word



The R-word. Seriously, you have to have a better term, unless you're really just that incapable of coming up with anything witty. Because The R-word is not witty. It's not funny and it's not something you should use.

It's insulting to anyone who has developmental delays. It should be insulting to everyone. It is an outdated term and the R-word is no longer used in medical texts.

I "hear" it more often than I used to. I don't think it is used more often than it used to be, but I'm more aware of, or at least more sensitive to the true meaning.

I notice it when people use it perhaps because it stings.

It is hopefully unintended, but using that word as a joke is a derogatory way to talk about my daughter. You see, my daughter is blessed with an extra chromosome.

However, the R-word has changed meaning over time. Our language is a living thing and that medical term has become a joke and an insult.

It is no longer a medical term. The medical community recognized what the word had become and removed it from their descriptions of developmental delays.

The negative assumptions of her capabilities are what make it "funny." The things she works so hard to accomplish are summed up as a joke. Even today I am advocating to allow her to be involved in activities with typical peers because the world assumes she is not capable of being part of that world. That's the joke you are inferring when you use that word. The ha-ha, the funny. This is the history of segregating persons with developmental delay from the rest of society.

Don't pull my daughter out of the world because you cannot accept differences.

Most of all, don't use the R-word. Come up with something better.


Wednesday, April 5, 2017

The rules change once you cross into the world of special education

I volunteered in the big kid’s classrooms when they were in elementary school. It has happened less so in recent years due to the direction our lives have taken. In the past, I was at the school once a week before the younger two were born. I remember being welcome, allowed to help and given things to do. At times, I felt so out of my element, being around the noise that is a classroom compared to the silence that is an office. However, I always felt welcome and I always felt like my kid’s teachers wanted parents to be involved.

Fast forward a few years. There are now four kids in our family. My youngest in school is in developmental preschool. She is on an IEP. During a recent IEP meeting her teacher suggested that I drop by to visit the class. Since there is also a very young one at home, this has not been an easy task to accomplish.

On a random Wednesday, I had taken time off from work for two appointments. One for myself and one for my preschooler. I decided to take her to school and drop by the classroom for 30 minutes. Having been welcomed in the classroom for my older kids in the past, it never occurred to me that this would be a problem. I was more concerned that I had found a moment to visit.

I went to the school office and signed in as a visitor. No one questioned me, no one asked if I should be there. I do have a valid background check on file with the district at my older daughter’s school, so I assumed that would be fine.
After that, my preschooler and I went to wait outside. First the big buses come and then the little buses. The kids wait on the buses for the para-educators and once everyone is there, the entire class walks back to their room. Anna and I followed the class holding hands. Anna seemed pretty thrilled to have me there. She put her coat near her cubby and given the chance, I think she would have showed me around the room.

I told the teacher that I was taking her up on visiting and she left the room. Then the kids lined up for the bathroom. As we were walked across the hall, the principal came out and cornered me.

“What is your intent in observing the class?”

My intent? My intent was to take the teacher up on her offer to visit the class.

She then proceeded to tell me that I needed to give 24 hours’ notice before visiting. I asked for a copy of that policy and she told me it was in the teacher’s contract. She then said I needed to leave. I was escorted back to the office.

I have never felt so unwelcome at ANY of my kid's elementary schools.

I had always thought that my daughter was loved and cared for at school. I had never questioned that. However, now I wonder if that feeling of safety was wrong. My daughter cannot tell me about her day and I have never before had a reason to feel her delay in expressive communication could be a problem. I left her school classroom wondering if there was something being done to my child that the staff didn't want me to see. This is a HORRIBLE thought for any mother to have regarding her child. I shouldn't question her safety at school due to a lack of transparency by the adults in her life.

It is one month after the event and I have not heard one sound from the teacher. The director of special education called me, the school principal called me, scheduled a meeting and then canceled the meeting. Her teacher even managed to be sick during the IEP meeting a few weeks after this event. 

What was their intent in blocking my access to the classroom? What is their intent in ignoring what happened? This shouldn’t have ever happened, but with each passing day it becomes more of a “something.”