Community?

I was made fun of on one of my favorite autism FaceBook pages last night. By a commenter, and the page owner, an autism mom herself. All for stating I didn’t support a man who made fun of the disabled.

When you normalize a man who belittles and berates anyone who disagrees with him, I guess this behavior is to be expected.

What’s sad is that the autism community has not rallied together in defense of the strides we’ve made in healthcare and education. It seems we are even more divided than before, to the point that I’m not sure a community still exists.

I try to remain hopeful for the future. I try to tell myself that this too shall pass.

The question is, what will remain when it does?

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There’s Hope Here

I spoke with the band director about band camp next week. Originally, he had said he wanted The Boy there, which would mean a 12 hour day and missing the last week of Summer Day Camp. The Boy put the kibosh on that, but agreed to go after day camp. I asked him if he understood that meant a change in his routine – he would have no time at Grammy’s for the week, and would add an additional three hours to an already long day. He assured me twice that he could handle it.

When I spoke with the band director, I told him the schedule The Boy would follow, and he seemed to understand. I asked him about a few logistical details, and if there would be an upperclassman or someone who could help The Boy keep track of what he is supposed to do. He responded with the name of an adult supervisor who had helped The Boy’s friend last year, and would be very helpful to The Boy – he had already made arrangements for this, which impressed me.

Finally, I asked if it would be helpful for me to come in and talk to the kids about autism, and at first he said that the kids already had some experience with The Boy’s friend. I responded that The Boy is a different kid, and that we sometimes expect kids to know how to react when they really have no frame of reference. He really liked the idea, suggesting I come in after the school year has started.

So I have renewed hope for this enterprise. The band director seems much more open than the directors we’ve previously encountered. He has some learning to do, clearly (Rule #1 of autism: If you’ve met one kid with autism, you’ve met one kid with autism), but seems to know there’s room to grow there.

I just texted my friend, mom to The Boy’s friend and his twin brother who will be in their second year of marching band this year, asking if they would save him a spot at dinner, which is just about the time The Boy will arrive to band camp each day. She said The Boy’s friend and his brother have already indicated that they plan to “look after him,” which warms my heart and gives me even more hope. Maybe this will work our after all…

 

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P.S. The ex actually sent me a check to pay for band camp… Will wonders never cease!

Paint Chips

The Man and I have both been trying to get The Boy to do a little more around the house. We finally completed several of the Independence Challenge prompts, getting The Boy to plan a meal that he would make for us (pizza, what else!), go grocery shopping for supplies, follow the directions, prep the ingredients, and cook the meal. But it took a lot of prompting.

While at the new house the other day, The Man was working on getting The Boy to water the newly planted sod. He needed him to stand there and soak the same area for a couple of minutes, and even that was difficult for The Boy to attend to for too long.

It’s a struggle, and I often worry about his future in moments like these. Will he have the patience to follow directions at a job? Will he be able to work independently without someone hovering, saying “No, it needs a few more minutes of soaking”?

https://www.flickr.com/photos/vanhoosear/24787619731/in/photolist-DLp2KZ-5xuioL-4eT3U-4W8ov6-cAxrbA-attWhH-97iCs8-ny7zGA-h4EMTf-aiF3Gc-c5aE2A-aC675a-6oE9kA-6Rg68S-bwT7eM-9E1W1R-8AnZD8-ftHg8g-pzSyRq-aC67kP-46FHiq-6fAwKJ-6Rc33V-uVWLG-97gpEp-4W8oHK-qs84Wn-7YNfA6-dLSzms-aCUMBY-mSAkXk-ecdUN2-c9gPfo-95seiy-4QsLC7-9ijb8D-atJ7Md-dUNmfn-9vu83H-61zeUH-qfXTXe-8cmoop-cyjKzy-7PKT9S-7di6cE-9vG7Jo-qGF3v-8FPySB-6Rc3Jr-8ivZMh

Paint Samples by Todd Van Hoosear

We are in the midst of painting the interiors of the new house, and struggled to find the right color, buying five $4 samples before we found the right one. Many trips to the home improvement store, sometimes with The Boy, but often without. We stopped after I picked him up from Grammy’s one night to get a fresh batch of paint chips for possible colors, after the one we had thought would be perfect was much too yellow. I was trying to be quick because we had groceries in the car and it was hot outside. Suddenly, I looked over at The Boy, and realized he was sorting the paint chips into the right slots and straightening them. No one had asked him to do it. He saw that it was kind of a mess, and he felt compelled to bring into some semblance of order.

It gave me hope. I’ll never have a definite answer to my questions about his future until the future becomes the present. But moments like this allow me to see the possibilities, and that’s enough for now.

Some Rough Days

The Boy has been having some rough days at school this week.  Lots of talk about people being absent from school, and students who have “left” school and may never come back.  None of it is true, but he has emotional reactions to these “events” and we are left to try to figure out what is at the heart of it. Add that to lots of perseveration on his favorite topics, and anyone can see he’s anxious about something.

His teacher emailed me the other day commenting that he seems to let one small correction bother him, and then add real infractions to ensure he gets “punished” or sent home, or some judgement that seems worthy in his mind.  I let her know that this is a common occurrence at home, as well.  Yesterday, I could tell she was frustrated because her email started with “Another bad morning today…” at 10:07am. Rather than respond, I let it ride. She’s young, and doesn’t seem to have the patience the job requires all the time.  Maybe she just needed to vent. I wanted to remind her of Rule Number 1: Behavior = Communication, but I didn’t.  People don’t like it when you tell them how to do their jobs.

crabby

And sometimes he’s just crabby… Kiddos on the spectrum are allowed to have emotions, too.

I’m not sure what’s going on with The Boy, but he seemed much happier yesterday afternoon than he has been in about a week.  I hope that whatever has triggered this latest round of rough days has resolved itself, but only time will tell.  The Boy and I did talk yesterday evening, and I got the sense that we had turned a corner.

Sometimes we figure it out, and sometimes we let it ride and walk on eggshells for a bit. As our very favorite teacher always used to say, “Tomorrow’s another day.”

Helpless and Dumb

Whenever I was sick as a child, my mom would say, “I hate it when you’re sick,” and I never truly understood the depth of that until I had my own child.  Today, I looked at The Boy and said, “I hate it when you’re upset,” and burst into tears.  “Why are you crying, Mom?” he asked.

I cry because I’m helpless and I know nothing.  I had to come and pick you up at school today because you wouldn’t go to class, and then tried to escape school.  I don’t know why.  No one does, and when we ask you, you start talking about your bus driver from last year, and how he must have retired because he doesn’t come to pick you up anymore. You talk about not going back to school until next week, or returning to that other middle school you went to for a quarter last year until I screamed enough to get you into a better one, the one you go to now.

I cry because I don’t understand your motivations, and I just want to make it better and easier for you.  Can we clarify the bus rules for you?  Let’s make a checklist so you don’t forget your band binder again. How can I make it better?  And I get no answer.

I cry because you are my only son, and I can’t see past this very day for you.  I hope I can get you on the bus tomorrow, but I don’t know if you will go.  I don’t know what will happen then.  I don’t even know if I will be able to return to work later today, if you will be able to calm down, if we will be able to come up with a reasonable plan to get you back to school and going to class.

I cry because there are no answers.  All of us autism parents just throw stuff onto the wall to see if it sticks every damn day.  Some of it sticks, and a whole hell of a lot of it doesn’t and you go back to the drawing board.  If I had a dollar for every time I said or thought “I don’t know what to do…”

All I can do is rely on experience, try, try, try, and hope, hope, hope.  But in the meantime, I hate it when he’s upset. 😦

An Open Letter to the Mom in the Doctor’s Office Today

I overheard your friend (daughter? niece?) reading to you from that questionnaire today, and I took notice because of all of your “no” responses. I immediately remembered those soul-crushing, developmental, yes or no questions, the mix of defensiveness and hopelessness when you begin to understand just how far behind your little one is.

“Does your child point to an item s/he wants? Does your child turn pages of a book independently? Does your child say three words?…”

And on, and on, and on. I heard the tone of your voice change the more she asked. I heard you begin to whisper. I glanced at your face to see if you might cry, but you were holding it together. I guessed the tears may come later when you are alone, maybe before you fall asleep tonight.

And I watched your little one. I watched him smile, and observe the other children playing – he was watching close, but something was keeping him from playing along. He looked at me and made eye contact. I waved and smiled. He smiled bigger and looked to you for reassurance, but you didn’t notice.

I wanted to say, “This tall, gangly boy of mine sitting next to you didn’t do any of that stuff either. We had to use flash cards to teach him words. He didn’t point at anything.  They thought he was cognitively impaired because he played with the toys wrong.  But you know what? He is the best speller in his class and uses words like ‘misheard’ and ‘eclectic’ as an almost-seventh grader!”

I really wanted to say, “These questionnaires are a special kind of torture for us, and you are most definitely one of us. You are not alone.  Don’t discourage too quickly.  Be hopeful, because he needs you to be. I have been in exactly that spot where you are sitting and it is awful, but better days are ahead. Believe in that little boy.”

But I didn’t say anything because I’m not sure I would’ve wanted anyone to do that when I was in your place. Maybe I should have. Instead, I hope you get the support you need through this process, and that you realize quickly that he needs you to just do what you gotta do to get him as close as you can to where he needs to be.

And that there are lots of us rooting you on, even if silently from the chair next to you in the doctor’s office.

My little blond boy, once upon a time...

My little blond boy, once upon a time…