Communication Skills

Today’s timeline:

10:32 AM – I get an email from The Boy which seems to indicate that A) someone told him drivers’ ed is not available for him – unsure if they told him “never” or “not right now,” and B) someone told him that he can’t hug girls – an ongoing issue that the school has admitted they have no idea how to handle. Two negative interactions with authority figures, and he is upset.

11:18 AM – The Boy’s Business teacher emails me and the special ed teacher to say he had arrived 15 minutes late – an ongoing issue that I don’t believe has even been addressed, other than to mark him absent (?) – and also that The Boy sat down and began to “color.” When asked to put it away, he got angry and left class. (Why they insist on saying “color” and “coloring” as if he’s a toddler, I don’t understand. It’s super dismissive. He is drawing, but I digress.)

11:27 AM – The Boy’s special ed teacher responds, asking if he returned to class because he had brought his “coloring” stuff back to her room and left again.

12:09 PM – I respond asking someone to update me, and if my son is ok.

It is now 12:35, and no one has responded to me.

If he had an aide, like he had in middle school, the aide would have known he needed to decompress upon entering Business class, and explained to the teacher to let it go this time (and indeed, would have made sure he was on time to class). If he had an aide, she might have been able to help him regulate his emotions so he could stay in class. If he had an aide, they would no where my child was. If he had an aide, maybe she could respond to me to let me know my son is safe and sound.

Three weeks ago, something similar happened when he got upset upon boarding a bus for a field trip and noticing the girl he has an interest in was absent. I received emails from him saying he got left behind, that he couldn’t find his special ed teacher, yet no email or notification from the school. When I called, the secretary kept trying to put me through to the special ed teacher’s room, and there was no one there. Finally, I sent my mom over to find out if they even knew where my son was. He had started walking toward the highway, and the new assistant principal (who kept advocating for him to just go home with my mom) didn’t alert anyone that she had him. The principal and the police liaison got in a car to go find him… After my mom arrived, SHE called me to update me, and it wasn’t until much later that the principal called to tell me what had happened.

I shouldn’t have to wonder about my son’s whereabouts and safety. I shouldn’t have to contemplate a $500 monitoring system like AngelSense because school personnel can’t be bothered to let me know what’s going on.

I think The Boy is much better communicating, at this point, than school personnel. When/if they get back to me to let me know my son is safe, I’ll be requesting a meeting, ASAP. This is beyond the pale.

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Not Easier, Just Different

Mom & The BoyThe other day, I pulled out all of the scrapbooks and went through them, remarking at how little The Boy was, and reminiscing. I think some people look through old photos and are wistful for easier times…

I don’t know about other parents with kiddos on the spectrum, but I don’t miss those times. They certainly weren’t easier.

Back then, I had to deal with diapers, until the age of five.  Now I have to deal with the toilet clogging on a regular basis (Thank you, Intestinal Surgery!)

Back then, I had to deal with The Boy wandering and getting lost in department stores.  Now I have to deal with getting him to get some fresh air and come out of his room.

Back then, he was obsessed with Wubbzy and Mat Man.  Now he is obsessed with Sonic the Hedgehog, and the dome lights of cars.

Of course, our history isn’t entirely one of struggle. Luckily, the blessings of that little Boy continue to make him my joy today.  He is still (even at thirteen!) affectionate, at least at home. He still has a wonderful sense of humor, and is a lot of fun to be around. He is still able and willing to participate in the world around him (as soon as he finishes his game).

Nope, I don’t miss those days — OK, maybe I miss the smell of a baby, the giggle of a toddler, and the ability to pick him up and carry him out if he started fussing. But I don’t miss not having a single clue about autism, or a single person to talk to about it. I don’t miss the what-ifs and constant worry that is only lessened with experience and time.

I’m not saying it’s easier now.  It’s just different.  And now, even if I don’t have all the answers, at least I have a clue. 😉

What Do We Do?

I followed Avonte’s story from afar.  I didn’t allow myself to get to close, especially as the search went on.  I know the statistics, that after the first 48 hours, the chances of finding someone who has gone missing are infinitesimal.  And that is probably a statistic attached to neurotypical, verbal people.  When you add nonverbal autism into the mix…  Let’s just say my mind stretched toward dark places.

So I stayed aloof.  Until Thursday.  And then I couldn’t stay away any longer.  I knew it was him.  And I began to cry whenever I let my mind get close to the story.  I pushed it away, waiting for the other foot to drop.  And yesterday it did.

There are no words.

I just can’t imagine.  And I can, and I don’t want to, and it hurts, and I feel such sorrow.  And anger.  And hopelessness.

So the question now is, What Do We Do?  Do we say “That’s so sad,” and go back to our lives and do nothing like when Newtown happened?  Or do we actually do something?  Is this acceptable in our society?  Can we lose more nonverbal kiddos so easily?

What do we do?

Maybe the first thing to do is send our condolences to the Oquendo family:

The Perecman Firm
Attn: The Oquendo Family
250 West 57th Street
4th Floor
New York, NY 10107