Seated at the center of a half-circle desk, I try to adjust my posture to fit. This is impossible — I am sitting in a chair made to accommodate a 5-year-old. I am 5-foot-8, and my knees form a peak higher than the edge of the table. I don’t feel like myself at all. I have a head cold and I forgot to take medicine before leaving home.
The boy’s school smells of old cafeteria food, and I am overwhelmed with childhood memories of not knowing which lunch table to pick. I wonder silently if awkwardness is genetic? I decide that it must be and I know he gets it from me.
In attendance at the meeting are the boy’s teacher, an occupational therapist, the school’s psychologist, the school’s counselor and a few administrative people that wander in. Two people admit to seeing e-mails about the boy and the meeting, but they are turned away at the door. They don’t need to be there.
I am shocked by the loose communication practices and wonder about my privacy. I try not to let that bother me. I am too busy feeling outnumbered, and my confidence is shrinking. We start with introductions and I don’t shake hands but warn that I’m not feeling well. I secretly hope they will take it easy on me — I can’t explain why, but I feel like they are their own team.
We are here to finalize a 504 Plan. This is spurred by the boy’s teacher asking him to cease ticking/stimming in class. He is having trouble toileting, transitioning, following social rules, abiding by school policies concerning personal space and walking in line. If only I had sent him to school with one his special T-shirts on…you can read more about what this means for children with disabilities here.
Basically, any child with a disability is protected by law so they can receive accommodations to help them thrive in the least restrictive environment possible. For the boy, this means he will be with a typical classroom with extras in place.
I try to maintain eye contact while I explain the recommendations from the boy’s occupational therapist, but my person of focus is sending secret messages to other parties at the table with her darting eyes. I get it, they have already formed an opinion. They have probably done this a few hundred times.
We speak briefly about each accommodation, and each one is met by the same response from their OT. “I can’t recommend anything specific to the student because I haven’t met or worked with him yet.” I wonder why she is even at the meeting, but it is a blessing in disguise because they take the suggestions from our OT. We “win” by default.
When we start working on the accommodations that affect how the school staff is allowed to address/discipline the boy, I am basically shut down. What I want is language on the 504 Plan that is clear, stating that he is not to be asked to stop ticking/stimming. I want it to state that the boy can not understand metaphors, analogies or simple plays on words — instructions have to be concrete and clear. Here is the example I offered them in an attempt to make sense of this:
Last week the boy called home. He was so upset that he just stated repetitively that he needed to call home. I was pleasantly surprised that he was advocating for himself — a call home when upset is huge! I hear his voice and it is just noise, no words. I ask to talk to the school nurse because I can hear her trying to coach from the background so he hands the phone off.
She tells me that Owen pushed another student during recess and when he realized what he had done, he was inconsolable. He wants to come home and he keeps saying that “His mom told him if he isn’t feeling good — he can go always go home!” That is one example of the boy using an absolute. He can’t see the difference between illness and not feeling happy, both are bad and both mean he gets to go home. Oops on my part, I know better!
That evening, after the boy has spent hours alone in his room working over what happened at recess, he finally agrees to role play with me. He acts out what happened and I try to follow along. He shares that he was running with another person trying to play tag. I’m thinking (Ugh, tag — he sucks at tag. Seriously, he doesn’t get how this works. No wonder this went wrong!)
Anyway, he is attempting to play tag and he runs up to someone who refuses to run away from him. So he gets frustrated with the person who he says,“Obviously doesn’t know how to play tag!” and he pushes them in an attempt to get them to run. The other child cries and the boy realizes he has made a terrible choice.
It had never occurred to the boy that just because he was playing tag — other people might be doing or thinking something different. When I explain that he needs to make sure someone is actually on board with the group and a player who has agreed to the game, I can see the light bulb turn on. Ohhhhh!
This isn’t what brought on the meltdown though. Nope, when things really got lost in translation is when the boy was approached by the recess teacher. She told the boy to go stand on the wall because he was going to have to “Pay For What He Did!”
So what? To everyone else we know that means that actions have consequences. It’s not a super nice way to say it. But to the boy this was totally and completely overwhelming, confusing, and fear inducing. He lost it. He couldn’t find words to express that he had no idea what this means. Later he says, “But mom I don’t have a job! I don’t have any money! Do I have to pay money? Will I go to jail if I don’t pay for what I’ve done? What am I going to do?”
I am told that this is just something he will have to work through and that the team doesn’t think that accommodation is necessary. I beg to differ. The school psychologist is patronizing and bored. I can tell by her body language that there are a million other things going on in her mind. She shuffles her papers over and over again. I don’t know yet, but those papers are for me. Whenever I try to speak about the boy, I am interrupted or rushed. I hate this and want to leave, but breathe deeply and try.
I try to picture what it would look like if the boy coached me, like I coach him and I let out a giggle.
The best thing for the boy, that is why we are meeting. How can we offer accommodations to help him succeed? What is the plan? Well, the plan looks like this:
He will have a visual chart on his desk. Teacher will provide ample notice of changes to schedule and provide a daily list.
The boy will have a sensory seat (wiggle seat/carpet square) for assemblies and circle time.
The boy will be allowed to take sensory breaks as needed throughout the day. This break can take place in the hallway outside of the classroom, in the nurse’s office or the counselor’s office.
There will be a sensory box provided for the boy for him to use freely when he is over/under stimulated.
Recess will never be withheld as a disciplinary measure. Physical activity provides necessary sensory input.
The boy will have access to an assigned adult for toileting accommodations. These include assisting in self-care and comfort. He will also have access to a stool to assist with comfort on the toilet.
Access to a weighted lap pad when necessary.
The boy will have noise cancelling headphones for assemblies and any other time he needs to reduce input.
An assigned peace keeper will assist the boy during recess. If the boy is overwhelmed or requires disciplinary action his peace keeper will stay with him. After such action the boy will be allowed to swing for the remainder of recess but free play will not be an option.
So that’s that. The 504 plan is finished and signed. Except we aren’t done. I am handed a stack of about twenty papers. I need to fill these out and bring them in as soon as possible.The school psychologist closes the meeting by introducing a new plan. The boy is going to be evaluated again.
This time for an IEP, that is, an Individualized Education Plan. Now this is hard to hear but it is very good news for the boy. Because while the 504 plan is good for now, it isn’t good enough. She tells me that we are only here to discuss and complete the 504 plan, we can’t discuss the IEP at the same time. We needed to schedule that in a meeting.
So really this meeting was just the meeting before getting together to meet about another meeting.
This system is so, for lack of a better word — stupid! I know that I am new, I am not a professional, I’m just a mom advocating for her “student” but for goodness sake! Who is running this show? Why haven’t we streamlined this process? Why are we wasting valuable time over multiple meetings to get things in place for these kids?
Again my mind is drowning in the bittersweet of the circumstance. I want to celebrate the new accommodations, and yet I cant get past wanting to fix this arduous process for those trailing behind us. I am going to follow up with the school next week to make sure they are following through.
Read more from me at Momma Has Monsters.