Friday, April 18, 2014

All the Joy, All the Sorrow (Part 2)

The after-school art teacher’s e-mail hit me like a sucker punch to the gut. Instantly, I could feel my pulse quicken, my breath shorten and my eyes burn. I stopped being able to hear whatever it was the Ren was saying to me in the next seat. I had to remind myself to breathe, to focus, to keep it together. Every time this happens, every time Sky is rejected so completely, I never fail to be amazed by just how close to the surface my emotions are. Raw, is probably the right word for it. I always think I’ve moved on, gotten thicker skin, figured out how to not let these things bug me, but then something happens, and I am right back in that horrible, vulnerable space.

“What?” Ren asked, noticing my sudden inattention to our car conversation.

“Sky’s been kicked out of the after school program,” I said under my breath. In the car, I’m aware of the three pairs of ears listening to everything we say.

This was Sunday afternoon. The new session was scheduled to start the next day after school. I had no idea what was going on, so I had to ask.

“Sky, buddy,” I started, “have you been having trouble in after school art class lately?”

“I don’t think so,” he replied. “Why?”

Listen. I know I could have lied here. To be honest, I tried stretching the truth a bit by saying something about how the class was full, so he wasn’t going to be able to take it because the teacher wasn’t sure she could help him if he got overwhelmed. This was kind of true—the program director mentioned losing a parent helper and larger numbers than usual in her message. But, then I started to think about how we are always talking to him about the importance of understanding his behavior and how it affects others and learning how to self-advocate. And I realized he needed to know. It broke my heart to have to tell him.

“The teacher says you’ve been shouting out and sometimes you throw things. She says you fall out of your chair. Is that true?”

“Well, I guess I am kind of loud since I’m excited. But I don’t throw things. Sometimes I toss them onto the table though."

“Okay, buddy, I see.”


“Well, that’s why they said you couldn’t come back.”

“Oh." Pause. "Wait, so you mean, even if the class wasn’t full, I couldn’t go?”

“Maybe,” I said hesitantly. “Yeah, it kind of seems that way.”

He got stuck on that point and asked me the same question in several different ways just to make sure he got it. When it seemed he had, I said, “All we can do is keep working on those things that are hard for you. I know you’re awesome and that it's going to get easier. It just takes time. And practice. I'm not worried about it, though.”

Then, I shifted the conversation back to the great art show and how proud we were and how proud his art teacher and his homeroom teacher were of him. I reminded him of all the people who gave him a shout out on Facebook and what his grandparents said.

After a long afternoon and evening of willing myself to breathe deep and keep my eyes dry, I finally got the kids to bed. I had three hours of work ahead of me, and I really, really just wanted to let the ignorant woman and her stupid program go. Clearly the program wasn’t a good fit for Sky. Clearly they didn’t see him the way he deserves to be seen. Screw them.

But, the more I thought about it, the more I just knew I couldn’t let it go. This was the first time since he’d been diagnosed that Sky had been asked to leave anything. Worse, the more I mulled over wording of the e-mail, the more I was convinced it was just plain discriminatory. I can’t tell Sky to advocate for himself if I'm not willing to do the same.

So, I wrote this response to the woman:
Thank you for your message. Since I had not heard of any concerns regarding Sky’s behavior recently, you can understand our shock at receiving it. (In fact, our last correspondence was more than a month ago, when you wrote, “We will see how it goes, and I will advise from there.” I responded to your message immediately, asking to be informed as soon as possible if there were problems, but didn’t hear from you again until today, when you wrote to tell me that Sky’s registration was being denied.) 
You should know that your “difficult decision” has deeply hurt my son who loves art and who struggles but works hard to try to fit in with his peers. Sky is upset, a situation made worse by the fact that we are just now learning of your decision (by e-mail, no less) the day before he was set to begin a new session, one in which he was very much looking forward to taking part. 
In your message, you list several “efforts” made by the teacher, but they are far from adequate since we were never able to have enough communication to actually talk about why Sky might be behaving the way I am told he behaved. You mention that she tried to use some of the phrases I suggested and that she made laminated cards (even though those are cards that, at my request, were made by his IEP team, discussed with Sky, and sent with him to the classes in order to try to help him). None of these things will be effective without some understanding of why Sky is doing what he’s doing. This, I know from experience (and is, in fact, supported by much recent research on Autism Spectrum Disorder), which is why I have offered repeatedly to try to work with Sky and the teacher to alleviate some of her concerns. 
Interestingly, when I try to ask Sky about some of the incidents you mention, he is truly befuddled. This is not because he has forgotten or because he is lying about his behavior, it is because much of the “verbal outbursts,” etc. you describe were most likely part of his natural way of engaging with his environment and therefore not entirely noticeable to him. It is unfortunate that his behavior disturbed other children, particularly because much of it could have been remedied if I had been made aware of these “incidents” in a timely manner or been given the opportunity to try to help. I do wonder, though, if a child was upset by another’s physical disability, for example, whether the same blame would have been assigned. Would you fail to try to accommodate his needs if he was in a wheelchair? Or needed someone to sign the directions? 
Your pattern of waiting weeks or more to tell me that there were problems, your slow responses to all of my e-mails regarding concerns about Sky’s behavior, and your unwillingness to work more closely with me to try to make the classes work for Sky are extremely disappointing and, in my opinion, unacceptable. By being unwilling to work with me to help Sky succeed in this environment, you have ensured his failure. While it’s a difficult decision for you, it is devastating one for him (and, I should note, the first time in the four years since we received his diagnosis that he has failed to thrive, with support, in an environment, or worse, been asked to leave it). What makes it so frustrating is that it could have been avoided. 
In the future, I hope that you will make clear to the parents of special needs children wanting to take art classes that they cannot be accommodated in those classes.
This message didn't pull any punches, but I had to write it. I wasn't going to be able to sleep until I did. You know, I write these kinds of letters (calling people out on their idiocy) from time to time, but I almost never send them. This one, though, needed to be sent.

But, I was a little afraid to send it. I'd never been quite this blunt to anyone about how their actions impacted my son before. I'd never so blatantly accused someone of discrimination. It made me nervous. So, to make sure that I wasn't taking the wrong tone and unnecessarily pissing anyone off, I showed the letter to my friend, fellow ASD mom blogger Michelle Awesome. (She asked me to call her that--I agreed, but only because she promised to call me Samurai Mama from now on). Michelle's feedback was short and sweet:

"I think it's f^#*!ing awesome. Press send."

I knew she was right, but I needed that conversation and the support of someone who so thoroughly understood what this was like. (Thanks, Michelle!) Finally, I pressed send, and then (and only then), I could sleep.

To be continued.... 


FMBMC said...

Absolutely you should have sent it. She should have been in touch with you long before she was. She need to know that she doesn't live in a vacuum, and that her actions (or inactions in this case) affect others. And you were absolutely correct to point out that a child with physical disabilities would not have received the same treatment. Good for you!

And seriously, before-kids me and after-kids me are two totally different people. I will not hesitate to step in and say something if someone is hurting or intentionally excluding one of my kids. I used to be afraid of hurting someone else's feelings, but not any more.

Mama D said...

Glad you sent that. She needed calling out. If there is a higher power in her world, it should be sent to that person too.

Mom on the Edge said...

I fight every battle worth fighting, of course, but this time I wasn't sure it was worth the effort (and the added stress). My fear is/was not about hurting peoples' feelings but about incurring negative repercussions for Sky.

euchlid said...

That is a great response. Regardless of her intention or what she thought she was going to achieve, the outcome is the same. You can let him know that a fan from Vancouver, Canada thinks his piece in the art show is fabulous.