Once You Get to Know Him

Posted on March 27, 2014 by simpleijustdo

Throughout his life, The Boy has attracted a great number of fans. He has lots of people who love him deeply, including Fantastic Babysitter, his former ASD teacher(s), and lots of caregivers and therapists who have made up his support team. Of course, The Man, The Boy’s grandparents and I adore him, too. He makes us laugh, and surprises us everyday with his intelligence, sense of humor, and amazing abilities. And when mentioned by name to teachers and administrators in schools of many hundreds, only his first name is necessary. Everyone knows The Boy.

But usually, it doesn’t start out that way.

Usually, it takes a while for people to get to know The Boy, as I’m sure is the case with most kids and people on the spectrum. The very challenges that define the disorder make it difficult for neuro-typical people to get to know him. They tend to gloss over his human-ness and focus on what he can’t or won’t do for them. And as they get increasingly frustrated with him, he picks up on it and begins to distrust that person, which increases the likelihood that he will not or won’t be able to do what they need or want him to do.

This is the downward slope upon which we were sliding with his band director. But as sometimes happens, a realization was made that this kid (The Boy) is freaking awesome, and a second realization comes close behind – “If I was wrong about that, what else was I wrong about?” As soon as a doubter sees the error of his or her ways, they not only like him, but they become a fan, and a crusader to get him whatever he needs to succeed.

Now that the band director has seen and heard what The Boy can do (including make the entire class – including the band director himself! – laugh with a joke), he has been extremely helpful and communicative. He emailed after a recent playing test, saying how “proud” he was, probably because, as his program teacher said in her email that day, “his was the best tuba test of the day!”

I will take what I can get – no lie, this is a huge victory for The Boy. And I absolutely love how loved my boy is. But it sure would be nice for people to treat him well, and give him the benefit of the doubt before getting to know how awesome he is. He shouldn’t have to prove it before people will accommodate him.

Managing My Own Anger

Posted on February 4, 2014 by simpleijustdo

Yesterday was a doozy of a Monday. I felt like Alexander in the Terrible, Horrible, No Good, Very Bad Day (a favorite when I was growing up). There was an ant in The Boy’s juice, the cable box went wonky again, a co-worker lied to our boss and threw me under the bus for a mistake that was very clearly hers and hers alone.

And mid-afternoon I get an email from The Boy’s principal saying perhaps he could start on trumpet this week because he doesn’t meet the “criteria” to play the tuba. Yeah, that just happened.

There were no “criteria” to play the tuba even mentioned at our last meeting. That band director is discriminating against my child.

Luckily, I didn’t get the email until about 3 or so, because truthfully, I couldn’t concentrate on work after that. I was extremely preoccupied, and downright pissed off. Heart beating rapidly, I left work right at 5, and drove to pick up The Boy, planning my evening around the big, long response I was going to write.

The Boy was in a great mood, and I faked a good mood for him, as well. I shared the happenings with my parents and strategized about next steps with them.

When we got home, I began to type all of the phrases that had been rolling around in my head for three hours, constructing my three-page response. And I began to shake uncontrollably. Not with rage, but with anxiety. I also made several trips to the bathroom, which I have had to do when stressed since my mid-thirties. When The Man came home an hour later, we talked, and strategized some more, and I continued to write. I spoke with The Boy’s autism teacher on the phone to gain some insight, and then I continued to write. The Man knows that getting all of my thoughts down just right in my response was the key to my calm. Until it was a finished draft ready to send, it would be on my mind.

And of course, I couldn’t sleep last night. I knew it would happen, but there’s nothing I can do about it, so I just roll with it, going over things yet again in my head for several hours.

My draft is now complete, and it is a killer letter. I have a plan in place, no matter the response. He will play the tuba, and will not be switching to anything else. I’m still angry and anxious, but I’m managing it, thanks to my outlets: writing and planning. The key is knowing yourself enough to know how you are going to respond to anger, both physically and mentally, and to have something accessible which calms you… A bit like our kiddos, huh?

I’m Tired

Posted on November 11, 2013 by simpleijustdo

I’m tired of responding to emails about The Boy refusing to do his work, or clearing up miscommunications about tests and modified due dates. I’m tired of having meetings that go on and on about how he has basic characteristics of autism. Yup… We knew that already. I’m tired of people who apparently don’t have a dictionary or basic internet access, and still don’t understand what a modification is, or what autism even is in the first place. I’m tired of teachers trying to penalize him for “refusing” to do his work. I’m tired of receiving an email that sends me into a frustrated tailspin for the rest of the day. I’m tired of teaching my son about Egypt and minerals because for some reason they just don’t know how to teach him this stuff at school. I’m tired of politely telling them how poor their assessments are, for any child.

It’s overwhelming, and it has become my full-time job. And it can’t be. Pretty soon, I will not be available at their beck and call, and I will not have hours to prepare lessons for my own son. Because I need to work for real, and earn real money ASAP.

I know he is one of the 70 kids you see in a day (and don’t try to tell me you have more, because you don’t. There are only 70 sixth graders in the school). I know you feel like you don’t have the time to spend on this one child. But if there’s one thing you should have learned over the span of your careers is that the amount of time you spend on each child will never be equal. Some kids need more of your attention, and the equitable thing to do is to provide it, instead of throwing your hands up in the air and saying, “I just don’t know what to do!”

The internet is an amazing thing. You can find YouTube videos on just about anything. Hell, I don’t even teach PE, but I was able to find a resource on how to provide accommodations to students with special needs on the President’s Physical Fitness Test by simply typing all of that into my google search bar. It took me less than 10 seconds.

I just spent an hour searching “autism work refusal” and got some really helpful information from a bunch of sites. It’s not all helpful, but the search provided ideas for how to engage students on the spectrum who will not do classwork (and who won’t even show up for school), rather than punish them, and “hold them accountable”.

My kid loves school. My kid thrived in his old school. My kid has adjusted so incredibly well to the structure of middle school. They have so much in their favor, and they still can’t make it happen.

I can’t make his teachers want to help him, and I can’t help him all on my own. This is my conundrum, and this is why I’m tired.