In 2010 I received a weird phone call from my autistic daughter’s aide at the public high school she was attending. I was at work and unable to pick up the phone but the message mentioned something about “cursing and shoving…”  but the message was unclear. I wanted an answer to what was happening but unfortunately the school day was in full swing.  I had tried to reach teachers over the phone in the past and it is, as it probably should be, almost impossible to reach a teacher during school hours. I was concerned so I did what I thought was logical. I went to the school.

I signed in the office and asked if I could peek in on my daughter as she was not able to relay information to me (she has severe speech delays and cognitive issues) and was given a hall pass and escorted to her classroom. She was in a cooking class with typical peers, I know it was disruptive for me to come into the class but honestly, my kid was pretty disruptive even on a good day. I have never liked the way that schools are mandated to use inclusion in classrooms.  It always seems like my very disabled daughter was put with kids who were in classes that they really needed, vocational ed type classes like cooking that would possibly change their lives.  The classes weren’t remedial enough for my daughter and teachers had to spend so much time with her that they rarely got to pay attention to kids who may have really wanted to learn to cook.  But that is another rant for another day and this is a story about why I was pulled from this class.

Within 3 minutes of me getting to this class, a student showed up to escort me back to the office “like now”. I went back to the Vice Principal’s office where I was waited about 10 minutes for one of the four vice Principal’s to show up and inform me that I was not allowed to visit my daughter.

Clearly this woman misunderstood. Once I explained that my non verbal daughter, a kid who had hit other children in school, who had just started having seizures and was new to the medication used to treat them, naturally this woman would understand why I would need to check on her even without a phone call. Certainly when you get a call about “cursing and shoving” you would become alarmed in any regard and need to check in, right?  Whoa Nelly was I wrong.

I was informed that I did not have the proper pass for a parent. Got it, got to keep careful track of who is in school, made sense. Could I get one? No. Why? Because. Then I was told that I needed to have a different colored pass. Ok, they have a system and I just didn’t get the right color.  How can I get one? You can’t.

Was I being incepted? or Punk’d? I looked at this woman for a bit, feeling my neck get hot. I’m a very easy tell…I turn 17 shades of bright red when I am mad. Somehow, I didn’t yell but I did ask to take my daughter home.

“ok so you’re signing her out? For what reason?”

Did she not hear me? I repeated my concern that there had been an altercation and I wanted to check that she was ok.  She can not TALK to me so I would also like to touch base with her aide, in a quiet place so the aid could collect herself and I would be able to understand her and we should discuss this away from others because, FERPA, and….what the hell can’t you understand?!

Now I’m not saying that parents are easy, or that we are justified in all of our moves  but work with us for crisssake!  They call Special Ed kids exceptional for a reason, they require EXCEPTIONS.  No one likes to be “observed” at work but when you work in a public school you gotta put up with a little public.

The fallout for this involved an emergency IEP meeting (if you’re keeping track that’s about five hours I had to take off in the middle of a workday now for one incident) where someone from Administration came in and told me that he was very familiar with my daughter and her needs. I asked him how I was supposed to know what happens with her on a daily basis. He told me that I needed to ask her. Then I was put in the position that I’ve been in for so many years up to that point….win the battle or try to win the war? My head was pounding and my kid was sitting, once again, at a table surrounded by adults who had so much agency over her when she had done nothing wrong.

I took a few more hours off to research the other high schools and I moved my daughter to another school within the district, with a better system of communication.  I would occasionally pop in for lunch. No problems. As a working mom, it was the only time I could come in.  As a SPED mom, I had to take lots of time off to come to MFE’s IEP’s Assessments of all varieties and such. But these were meetings. My kid wasn’t getting invited to football games, or dances, or asked to audition for the school play. She never received phone calls from classmates, I never met their parents. That’s pretty typical for parents of kids like mine.

My daughter had tons of exposure to typical’ish kids at lunch. It was only went I went to lunch that I found out that all of the typical kids would throw extra milks only the table  for the special ed kids, or their extra fruit cups. It was so sweet I sat in the car and cried a few time after visiting her. None of the teachers told me this but none of them probably knew. Lunch was the ONE rare opportunity for her aide to get a minute to herself something all school aides desperately need.

There has been a lot of talk about kids in school since a school in Darien, Connecticut banned parents for lunch. But no one mentions the SPED kids, these stories never do. So many more parents are involved with schools not by choice but because their kid has a special educational plan and the school needs them to participate in meetings. I think lots of SPED parents would volunteer at schools were they not forced into a unnatural position as advocate for their kids which very often ends up with strained relationships between parents, administrators and teachers.

And honestly, these issues don’t change when SPED kids matriculate into adulthood, the players just change.  Although the meetings that are formed to plan my daughter’s life are less frequent, more like twice a year than the 5 times a year I was attending something when she was in school, I am still in that odd advocate/professional role. Thankfully, I’m her legal guardian. A move for which was like killing a fly with a hammer…I could have probably just filed for POA and gotten her all of the protection needed. But I don’t ever, ever, ever want to be kicked out of her life again.