Hello? Life? Can You Hear Me?

Dear Life,

I think it’s time we had a talk. These last few days… not your best work. So, yeah, if you could just not, that’d be great.

Let’s start with Saturday, shall we? An absolutely beautiful day, perfect weather. Good job on that part. My family went to opening day of a small local Renaissance Faire. It wasn’t all slushy and muddy like it was last year and my kid did pretty well there, all in all. But it only took one big slap in the face to muddy my memory of the entire day. Oh, you…you, don’t know what I’m talking about, Life? Let me refresh your memory.

We sat down on the hard wooden bench nearest the tiny stage, where my child had confidently lead us. The performer, Mr. Judge Laww, called the show to order with a booming “All rise!” And all rose. Except for one. You see, my son isn’t a participant in any activity that could be deemed “new” by any stretch of the imagination. He is strictly an observer. And that’s ok! Observing is learning. But it wasn’t acceptable to “the judge.” Despite me waving him on to continue the show and smiling at him while soothing my obviously worried child, he chose to have the audience, the entire audience, chant loudly, “OPPOSITIONAL DISORDER!” while glaring at Javan. A nine year old child. The most distressing part is…they did it. Granted, they didn’t know why Javan refused to stand, but they shouldn’t need to. Our society should be made up of adults who say “No, we won’t single out and publicly ridicule a child for any reason.” Instead, in that moment, it seemed to be made up of people who are hungry to judge. Who will instinctively follow hurtful orders from a man with a loud voice and counterfeit authority. Oh, but I’m sure it was all in the name of fun, so that makes it okay, right?

I’m not sure why Javan was nervous the rest of the show. I mean, anyone else would have been put perfectly at ease after such a pleasant beginning. But as each randomly selected volunteer was called to the stage, we had to quietly ensure Javan that he wouldn’t be chosen. That he wouldn’t have to participate. This, too, proved too much for Judge Laww, as he felt the compulsion to speak directly to my son in the middle of the show to loudly and nastily proclaim, “I KNOW you don’t want to be chosen. You don’t have to keep talking about it the WHOLE show. I’m aware!” But the thing is, he could not have been less aware. Aware of why one child might act different than the rest. About how huge of an achievement it was that Javan was even able to be there and enjoy parts of the day. About how hard his parents were trying to calm him and about how much his words could hurt.

I emailed the address given on the faire’s website, and was thankful and fortunate to receive this heartfelt, supportive response:

“Thank you very much for bringing this matter to our attention.   I will indeed have a discussion with this, and all performers.

I just retired from a school district, I worked as an assistive technologist in the special Ed department, most of my the students I worked with are autistic or hearing impaired, as communication was my speciality.
I also have a nephew who is autistic, so I understand your hurt when supposedly socially well adjusted people make life somewhat more awkward for our loved ones than it already is.
Please allow me to gift your family with free tickets, so you can come and enjoy another day of Faire, to help reinforce to your little guy that experiences can change, even in the same situations and environments.  Let me know how many are in your family so I can have the promo tickets at the front gate for you.
Please, make sure to have the front gate let me know when you arrive, so I can meet you and your beautiful family.”
So we will try again. Next time, though, we will pass Mr. Laww’s performance.
Are you still with me, Life? Feeling apologetic yet? No? Ok. Let’s move on to Sunday.
Remember that sweet little girl Javan met at McDonald’s after his field trip? The one who invited him to church? He was so excited to go. We prepped for it all week. But the morning of, he was all anxiety. We made him go anyway, reminding him that he’d been excited to go all week and that his friend would be expecting him to be there. We walked in, walked down the hall and peeked into the room where they have kids church, where lots of kids were engaged in free play with dodge balls and hula hoops. It was unexpected and way too overstimulating and unpredictable for him. He never even crossed the threshold, just stayed in the hallway protesting. He ended up throwing himself down on the floor, hitting, kicking, biting, yelling. So we left. He never even got a chance to see his new friend. While we were there, the children’s workers were so kind to us. One tried to engage with Javan and offered to show him around. A children’s minister offered to open a quiet room for him to settle down in. But we needed to leave. On our way out, the children’s minister said to us, “Please don’t let this deter you, because it doesn’t deter us. We want to help him.” Today, two days later. I received this email from her:

“Hi Krista,

I wanted to contact you to just touch base with the experience from last Sunday. I know it doesn’t seem like it was successful, but I see it a different way. Having you and your family come through the doors of this church was a very big step. It also let me see, though briefly, the extent to which Javan will react when uncomfortable. I am working on a solution that will allow you and your husband to attend church and Javan to get used to being in this building. I am prepared to take this as slow as we need to and as long as we need to so you guys, Javan included, can get fed spiritually.
Let me know if you’re interested and we will do this together.”
I was brought to tears. That she was even thinking of us, total strangers, and that she was not only willing but actively seeking to meet Javan’s challenges alongside us just feels like the kind of overwhelming love we really need. We will be trying this church again soon, sans Javan, and seeing if we might have a future there.
Life? Are you listening? Ok, I hear you. I’m pointing out all of the challenges you’ve been rapidly firing our way, and you’re pointing out all the amazing people you’re following up those challenges with. I guess you’ve got a point. I’m profoundly greatful for those people. But I’d prefer not to need their awesomeness in the first place, ok?
Ok, let’s talk about this school week so far. My boobs hurt. No, that’s not random and I don’t really care anymore if it’s TMI. They hurt because they’re punched and grabbed viciously every morning when I try to herd my unwilling child out the door to meet the bus. I think Javan sees them as a girl’s version of testes…he’s hitting me where it hurts, because by sending him to school I’m hitting him where it hurts. I get it. Make it stop now. I’m tired of hearing his screams as he is physically carried to and shoved into the bus. And the behavior reports that are coming home are just no good at all . Take a look.
20160405_123759
Text reads:
4-4: practice writing name, very disruptive, threw his chair at Mr. Robert, made a reading book, better afternoon. Behavior is marked “Good.”
4-5: would not participate with work this morning during N2Y  (News to You) or capital letters. One-on-one teacher work, vowels. Behavior marked “Needs improvement” with a note to look on back.
20160405_123805.jpg

Enter a caption

Text reads:
4-5: Javan would not throw his trash away at lunch so I took it and he slapped me and left a handprint on my back. He proceeded to try and bite me and when we came back to class he was disruptive and tried several times to knock his desk over. Trying to rip and tear teacher’s clothes and saying he would mess our face up. Grabbed my lanyard and arm and wouldn’t let go and took all three (adults) to pry his hands off my lanyard and arm (wrist). Javan is no longer allowed to bring his backpack because he is using it to try and hit us with it.Folder and lunch box only.”
Remember last week when I felt like we were winning? I feel…not like that. Mrs. Aide and another aide from his class talked with me in person when they dropped him off, explaining that he may be suspended for one to up to thirty days. Gulp. I panicked inside. I thought, “This is it. The beginning of the end. He’s going to end up living in a state hospital after all.” Ok, ok, my reactions can be on the dramatic side. I got an email from his teachers a few hours later telling me that he would not be suspended. The teacher, special education coordinator, behavioral specialist, and perhaps others worked together this afternoon to try and come up with and plan to get Javan back on track behaviorally at school. I just keep hearing the psychiatrist’s predictions in my head that Javan would probably do well at school for a  little while until he starts getting comfortable there and then these same behaviors I see at home will show up at school too and they won’t be able to handle him. I’m so scared. What if it doesn’t get better? What if it gets worse? What if they really can’t handle him? The only options I can see would be to try homeschooling him again or to institutionalize him. The former option feels dangerous; the latter, like giving up on him.
What are you going to say, Life? Don’t you think I’ve had enough for now? Maybe you could just lay off a bit. Yes, yes, thank you for not getting my kid suspended, but still. No, you’re not forgiven. You can do better than this, I just know it.
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