Spectrum Warriors: Life Through The Autism Spectrum

The Child Behind the Mask

We have been in the full swing of school for the last 2 months and I am beyond frustrated with the entire thing. I am frustrated that most of the things we have asked for are not being done and that they are not truly seeing him.

The Monkey has this ability to blend with his peers until he is put on the spot. He will like the same colour as you, he will like the same show as you, if you don’t like something he wont like it, if you have something that hurts he has something that hurts, if you think something is funny then he will act as if it is funny. Meanwhile at home he will ask,”do I like that mommy?”, “Is that funny daddy?”, “what should I do?” His inability to make a decision for himself is often times frustrating and when we tell him to go find something to do or tell him we can not make the decision for him on what he should like he gets frustrated.

In school he comes off as this fairly easy going little boy who follows his peers, who follows the rules, who doesn’t argue with the teacher(for fear of getting into trouble). He has his little ticks of chewing inside his mouth and twisting at his shirt that you really need to be looking closely to notice. The anxiety is always there lingering in the background. Afraid to be perceived as different he refuses to take breaks and just coasts along like life is peachy.

I know my child and I know how argumentative he is, how obsessed he is with routines, how scared he gets over trying new things. You can’t tell me that for the 5 hours that he is at school that these things just disappear? That his anxiety that he had all morning waiting for school to start and the constant questioning just ends the instant he gets to school? His lack of behaviors, his agreeableness, these are  his coping mechanisms and this will come back to bite us all in the ass when demands are actually placed on him in higher grades.

He needs you to see him. To pay attention to the fact that when he answers a question it is more then likely an answer he overheard someone else say earlier at some point and not how he actually feels. On more then one occasion now he has come home with wet pants as he has peed in them and I have to wonder how the hell did no one noticed that he had an accident? As a parent we put our trust in the school system that you will take care of our children, teach them and see them. For you to do this properly then you need to actually be paying attention.

Last night I emailed the school, regarding the assembly I could not prepare him for I had asked them to please put his noise reduction headphones on him, I had asked them to pay close attention to his queues that he is anxious, and to please be proactive. I then reminded them of how many times I have had to ask them to give me time to prepare him for these events. This was his first assembly and it was not just with students from his school but a Remembrance day assembly with other parents in attendance and with members of a Legion. This was a big thing and is something that needs advanced preparations. To Top it off Friday was Halloween, we had snow on the weekend, Monday turned into a snow day and all of those things just add up, up, up and up until they explode into a lovely mess.

Did the school email me back? No. Did the school put his headphones on? No. Did the Monkey sit near his EA? According to him no. How can you see his queues if your not sitting beside him watching for them? You can’t and what did this lead to? It led to a 6 year old who was to anxious to get up mid assembly to go to the bathroom that he ended up having an accident and did not tell anyone and no one noticed all day. Had you been sitting beside him you might have noticed he had to go per and you could have removed him from the assembly.

The school sees the Mask and not the boy behind the mask. He is not disruptive so he isn’t a bother and gets swept under the rug. Rebecca is having the exact same issues with MJ. Their high functioning abilities take over and no one sees the act they are putting on to get through the day. She too is being swept aside for being so compliant, pleasant and agreeable, but when will the school ask themselves when too much is enough? How many children do you know are compliant and agreeable all day?

We, the parents, are telling (screaming at the top of our lungs is more like it) you what we need make life easier at home after school but also to allow them to possibly go to school without the Mask on. To allow them to feel comfortable being themselves. The prep we do for our kids helps them function and eases the anxiety they have so that they don’t need to constantly worry about everything! Is that honestly to much to ask?

Once I calmed down I did call the principle at the school. I explained what had happened today and made sure she is aware that just saying there will be a Remembrance day assembly is not enough information for me to help him in any way. At least one week before an event like that I need to know what he will miss in his usual routine for the assembly, what will the assembly be about, will there be music or singing, will there be parents there, who else may be there, will there be anything that causes a smell (sounds odd but I have to ask), and what will happen after. Just saying there will be an assembly tells him nothing because he has no idea what that is. He can not form this picture in his head or remember what it was like last time because he has never been to one.

The Principle listened, she noted down all my concerns, how frustrated I am, how he isn’t getting the help he actually needs from his EA’s, how we need more advanced prep, how he needs to be forced out of his comfort zone a bit away from his peers to learn to think independently of others ( to think his own thoughts), how they need to be more aware of his queues and that they need to SEE him. He needs emotional support and that is something they are not giving him.

She said she would speak to the resource teacher and his classroom teacher and call me tomorrow. I can’t wait to see what she says and I hope that something will actually change. If it doesn’t then I will go to the school board and beyond because I wont tolerate being ignored.

Have a good night from one frustrated momma,

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Sabrina

 

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