If only chickens could be assistant animals....

Yesterday was focused on one thing, the meeting at school to reinstate our son. Now, if you have a kiddo who isn’t in Special Ed, you might be thinking that we met with one or two people. Oh no, there were seven adults plus Martin and I around that table. It was tense just listening to the carefully laid out meeting and account of exactly what happened last week. It is hard to listen to missteps and new information and not feel ambushed by this information.

What was the upshot of the meeting? That we put yet another new plan in place to try to help the boy know what the plan is ahead of time so he doesn’t get surprised at how people react when things go awry. This time the plan is of a specific script that is followed, like a flow chart, for him to know what will be his only two choices each step of the way. Plus, they are talking about having a safe place for him that is a sensory soothing tent (one of the ideas floated) that he can go to escape and cool down. This plan sounds good. It really does, but it was all the talk around it that gave us pause.

I sat there listening feeling heavy about the way we all talk about my son. I was so glad we had gotten a hold of a babysitter and that he was far away from this room. I know he has always heard us and others speak right in front of him as this is the nature of therapy, school, and daily encounters with the world around us. One therapist encourages me not to put too much adult thinking upon him as she points out he had the emotional thinking of a toddler most of time, especially in moments of stress. However, it is his moments of deep insight that tells me so much more is going on in his mind then I can even guess and it drags his intense emotions along with it when he strikes at an idea often.

He talked to me about his worries the night before the meeting. Right before bed he was just lying with his face down in his bean bag chair not saying a word. I always know to check on him when he is super quiet.

ME: Are you listening to the chicks?
(He rolls over and looks at me and then into the chick’s box then flops back down into the bag.)
ME: Their soft peeps are nice, huh? Relaxing.
BOY: Yeah. Yeah…you…you…you know chicks are relaxing. No chicks at school.
ME: Yes, but you can come home and relax with them.
(He rolls away and puts his face back into the bean bag)
ME: Can I ask you something?
BOY: Yes.
ME: Are you worried about school? You seem worried.
BOY: Mama, I am worried.
ME: About school?
BOY: Do chicks go to school?
ME: No, they grow and learn by living and God made them a certain way and they just know it. They know what to do naturally. They have pretty tiny brains. Do you know why you go to school?
BOY: I don’t know.
ME: We’ve talked about it before, but okay, it is for you to learn things you might not learn on your own---to stretch your mind and hopefully make friends. And you train to have a job one day.

BOY: Does…does everyone have to have a job? What happens if you don’t work?
ME: Well, not everyone has a job, but those that don’t have to be taken care of somehow. People have jobs to have money for one thing.
BOY: What is money?
ME: You know what money is. It is the currency that we use to pay for things we need or want, but hopefully mostly needs.
BOY: Does everyone have money?
ME: No, not everyone has money, but we all have to live somehow. We pay for this house with money we earn from our jobs. We pay for the food we eat and what the chicks eat. We pay for electricity to run the computers, radio, and things like these lights. That all takes money which we get from our work that we get paid to do and we went to school to learn what to do for our jobs.
BOY: What…what if…if…if I don’t get a job?
ME: I think you can get one if you want to. I believe you are capable of doing anything you set your mind to doing including going to school and getting a job.
BOY: I don’t know.
ME: I believe you’ll have a job one day when you are ready and I know whatever it is you’ll be good at your job. Very good!
BOY: What is a job?
Then we talked about all the possibilities of career paths and what he is studying at school that possibly relates to meteorologist, video game composer, or historian plus several variants of this. Then he brought it back to the chicks.
BOY: Mama, I can’t have a rooster unless I am on a farm. What would happen, if I were a farmer?
ME: Then I know you’d have a few roosters around.
BOY: What happens 21 days after a rooster is there?
ME: Chicks!
(At this he smiled and I got him to start on his bedtime routine).

As I was putting him to bed, he asked me about the meeting and why he had to have a babysitter. I told him I didn’t want him to feel horrible about us talking about him and him hearing all of that. I told him we would talk about what happened the other day and what to do about him getting through fourth grade. I told him he could come and in the near future he probably would participate in these meetings. He decided he didn’t want to come after all.

In our meeting I was surprised that the principal said that he hadn’t seen behavior like this from a child in the fourteen years he had been at this school. Other “experts” in the room also expressed similar statements saying how our son is redefining what is needed in place for the district. This comment had a harder edge to it then I was used to hearing. It is not something you want to hear about your child.

It sent me down the path of if they talk this way about him in general, what do his peers think? How does this prejudice other teachers or aids that don’t know him well, but encounter him occasionally? At this point they were batting around the idea of not reinstating him until they had an all staff meeting essentially to talk about how to handle him. (Remember, there are only five weeks left in the school year). They were talking one, two, maybe three weeks out---then school would be essentially over.

This really made me queasy and I wanted to shout, “He’s one little boy! He’s not toxic waste that you need to have disposal procedures in place! You sound like you’re ready to throw him away!” But, I didn’t and someone sensible squashed the idea of this all staff meeting. Instead a memo will go out with who to call to help if it looks like there is situation with him and a few words about not engaging him. That still felt….ugh….just ugh….

These conversations made me feel the weight of his worries settle in from the surrounding school walls. It felt closed off not open to life and light that I would expect in this setting. I understood where his thoughts of jail come from now---to be imprisoned by what others believe about you.

It gave me a real “aha” moment about autism in general and what are the indescribable barriers that many who are autistic adults talk about such feelings. Many analyze their young adulthood and look back on what it is to grow up autistic—where everyone talks about you. Many express great anger about it and decry the feelings of “less than”. I see what that must feel like.

My tears never came though, I felt like crying, walking out of that room. My grief felt dry and hot---fueled by anger at everything I felt at what I’d heard. I could hear my son saying, “That’s not right! That’s not fair!” So many times I’ve asked him, “What’s not fair?” And he would just make sounds because he had no words to answer. I had a tiny rain drop of understanding that it all isn’t fair in that the world works in a certain way and the only way he can see to go is not even part of this path, so he thinks. He’s right; I can see how that seems unjust. 

They are going to try to put everything in place that he can get back to school in the next two weeks. The autism district experts are trying hard to get it by middle of next week as they know as time marches on him wanting to return at all also fades with time and it is at a pale sliver right now. At least they are helping us shape how to hold onto any progress he makes over the summer.

 I just hope we can get all this theory to possibly work for my boy's sake. In the meantime, he'll continue having what lessons we can get done together while holding chicks on our laps and listening to those soft quiet peeps we love so much.