Find Out What Jen Finds

My journey on the spectrum of life … and the lessons I learn along the way …
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about Communication: sharing the diagnosis with your child

  • August 31, 2012 4:42 pm

I went by the library to pickup a few books I had on hold. One for The Younger: How to Talk to an Autistic Kid, and this one for The Elder: The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents).

I thumbed through it and was really excited about it. The Survival Guide for Kids with Autism Spectrum Disorders Then I had the worry…What if he doesn’t want to read it? I mean, I think this is something that he would want, and I think this is something he would need. But he has never asked me anything about autism. And if I approached him he responded with the annoyed tone of a teenager. My best strategies so far have been to set something up and just do it. Find videos, make him watch it. Find books, make him read them. Find games, make him play them. He does that with no issues. But have a conversation about this? Forget about it. How do you communicate about a communication disorder??

This book seems different than the books I’ve seen in the past. It is a survival guide geared for ages 8-13. It’s more like a textbook with real-life stories for examples, instead of social stories of how to act in certain situations – but it also includes solutions such as these. The first 7 chapters cover “What is ASD?” in a very kid-friendly presentation. A whole chapter is dedicated to Sensory issues. If I was THe Elder, I would think it was really cool, thus the reason I checked it out!

After School Convo:
M: Hey E, I wanna show you the book I got for you at the library today.
E: Hold on! (impatient tone – making me nervous) OK, I’m coming (happy bouncy tone – nervousness gone)
M: (Showing him the cover and just letting him read the title) I got this for us to read together.
E: (no response)
M: (Flipping through the pages so he can see all the pretty colors and pictures)  I think it will help answer a lot of the questions you might have about autism (assuming he had them, of course)
E: (no response)
M: (wondering if this was a bust and glad I got it from the library before purchasing) I thought maybe we could go through one chapter at a time.
E: (he gets up quietly and walks back down the hallway as he responds) Well, I have run out of books to read at night.
(Note to self: pick up more chapter books from the library)
M: (yelling after him down the hall) And if you like it and think you can use it for the rest of your life, we can get your very own copy!
E: Sure.

Yes!! My foot is in the door! Now I just need to get to Chapter 6 “Think About it, Talk About it” which clearly states “Ask Questions.” Because you know if it is a rule in the Survival Guide, then he must follow the rules! I think he will thank me for it…

More later as we begin the journey…

How do you communicate with your child about his/her diagnosis?

about Eye Contact: what I learned from my almost 7-year-old

  • June 12, 2012 2:51 pm

The Younger discovered an innovative way to get The Elder to make eye contact with him today.

Eye Contact

Standing about a foot away from him (and at the top of his lungs I might add), Y was calling his E’s name over and over (and over and over) to get his attention to show him his favorite part of the skit at VBS (Visual Basic Script). When E continued to appear to give the Lego Minifigure more attention than to Y, Y sighed heavily, regrouped, and then persuasively (imagine him dangling a carrot chocolate chip cookie in E’s face) said,

“It has pictures…”

That did it! The Younger had The Elder’s undivided attention after that! Of course, there were no pictures, just a visual component to the communication.

All I know is that I get exhausted saying his name over and over again trying to get his attention (Thank goodness his name is only 2 syllables!). I know he’s listening even if he’s not looking, or even if he’s in a different room or level of the house. I understand that he actually can hear me better if he doesn’t make eye contact. And sometimes he will even respond by saying “I’m listening” before I get to the 10th iteration of his name. An improvement. But who likes sharing something with someone who has his attention split? No matter how skilled he is at processing multiple streams of data with no eye contact, my neurotypical brain has a hard time adjusting to that fact and still needs to see his eyes to feel like I was heard. Whether I’m sharing a heart-warming story or if I’m asking a question or if I’m announcing what day it is. It’s a validation. Some days I forego it. Other days I remind myself that I’m not the only one who needs a little validation – he will encounter many who will appreciate his eye contact. I’m actually impressed at the level of patience The Younger exhibited (a rarity) to come up with such a creative strategy (creativity comes very naturally to him).

carrot

That leads me to some points to ponder about The Elder’s perspective. So just saying you’re trying to “show him something” doesn’t work – maybe too general or vague?? Perhaps “It has pictures” with the corresponding persuasive come-and-get-it intonation (maybe… then again, maybe not. I bet monotone would get his attention faster) generates enough interest and curiosity for him to actually look to see. Any other thoughts? How do you handle lack of eye contact? Better yet, if you struggle with eye contact, what other insights can you offer?

Well, I’m totally stealing The Younger’s strategy. Thank you, Son!

about Drama: a middle school gym memoir

  • March 15, 2012 4:38 am

So I had to face the middle school gym again…

The past was playing in my head reruns of my last encounter and I was suffocating at the thought of stepping foot back there. Could it have really been 2 years ago? On this day, it felt like yesterday.

The Elder had just randomly announced in the car that the “3rd Grade Founder’s Program was not this Tuesday but the next Tuesday after that and I.AM.NOT.PERFORMING.”


Flashback:
“This is optional but performance is required in the 3rd grade for his final grades.” I remember feeling immediate relief 2 years ago upon hearing this, and then a distant dread that I will eventually have to face this and prep him for it. So what did I do that fateful day in the 1st grade? I made his attendance required but his performance optional. It was a good and responsible plan, so I thought. I had arranged for assigned seats up front where he could see the performance but have a quick and easy escape without mowing down rows of people. We even had special “Reserved For” signs that I thought would distract him to see his name in print make him feel special. Waiting in the hallway that led to the cafeteria just outside the gym was pretty painless because he saw some of his classmates, and I saw some parents for socializing opportunities. Things were going well so far…


I am blissfully unaware at how this task had eluded me for 2 years. Normally I’d drop subtle hints to him along the way to prepare him for expectations. I couldn’t be too dramatic so as not to scare him off, especially since I personally love to perform – from birth I think. (I’m pretty sure I came out of the womb saying, “Ta da!”) But I had completely procrastinated until the last 10 days. Who AM I anymore? Was there a 2nd grade performance that we skipped? I couldn’t remember. Wasn’t there an announcement about this year’s performance? I blocked it out, I guess. I should check my spam box. Maybe it’s not my avoiding pain and humiliation but my avoiding requiring him to put value into something in which he does not value as much as I do – the performing arts. That sounds more noble and all, but truth is I am tired. I am anxious. I am self-conscious. I am desperate to go to a performance to be entertained. I mean, who wants to go to a gym that holds 515 (according to The Elder’s statistics in his head) noisy, hot bodies that I have to navigate through to chase my kid or protect them from flying shoes. No one. We go to shows to be entertained not to be in battle. Two very different kinds of drama here. One I enjoy, the other not so much.


Flashback:
What I personally was not prepared for, thus did not prepare The Elder, was the massive crowd of people that would be there 30 minutes early. We usually try to arrive places before any crowd does for transitional purposes, but I forgot that the number of 1st grade students here was probably equivalent to the total number of students that attended my entire high school at the time I graduated. (Flashbackback: I can recall when I was in the 2nd grade performing in the school play of The Wizard of Oz, we were in the elementary school cafeteria, T-I-N-Y.) I definitely didn’t expect the gym to be full, much less THAT large and full.


“But isn’t this performance for a grade this year?” He’s finally making good grades this year since his behavior has gotten under control (love love love his paraprofessionals) so this actually has an impact for the first time.

“I.WILL.NOT.SING.”

“You don’t have to sing. Think you can just stand there?” Did I seriously forget in 2 short years just how many people can pack into that gym. Of course the entire mass had been sitting away from us, but I was keenly aware of them. And if they affected me, they’d affect him ten times as much. I prepared to give in to his demands…

“Fine. But I’m standing behind the tallest person.”

Shock. That was way more than I expected. WAY more. I immediately petitioned for some help from his teachers on how to keep him calm and boost his confidence. I even suggested the guidance counselor. Supportive responses came back to me with various options, from choosing which tall kid’s back he could stare at to production stagehand jobs he could handle. We finally settled on passing out programs (with me).


Flashback:
I had just taken a program from the door greeter and entered the gym. From behind me, a black-brown shoe was launched into the back of the elderly person diagonally in front of me. I was mortified as I recognized the shoe. Another one landed in an open yellow area on the gym floor as if to caution me, and then I saw him go to pick it up to launch it again. I grabbed him and clumsily pushed through the crowd – former friends, I’m sure – out of the gym and retreated to the far corner of the cafeteria where The Elder pushed me off of him to go cohabitate with the dust bunnies and God-knows-what between the corner and the cabinets. It had happened so fast. I had no idea where my husband (and 4 year old) were. In reserved seats, I assumed. Did he have his ringer on? Did he know what happened? How many people were hit before I witnessed the grandpa’s discomfort? Did I apologize? How many people are judging him? Judging me? Oh my, where are his shoes?


I was a time-bomb ticking with anticipation.

The Elder’s behavior was stable at school, but was erratic at home and church for those 10 days.

I tried not to connect the two, but if the shoe fits…. (pun intended)

The stress culminated into a bloody mess on the day before showtime. I got a call at 8:30am from the school. The Elder was suffering from nosebleeds that they could not stop – a sure sign of stress. I picked him up from school, followed our normal “sick” protocol of no TV, computer, or video games and only Chicken Soup – just to reinforce that early dismissal is not a free ride. He took a nap, which I’m sure he sorely needed with the daylight savings time change, and then he beat the tar out of me in Monopoly. Probably just the respite he needed.


Flashback:
The performance sounded wonderful from the corner of the now-empty cafeteria. The principal walked through and gave us a hearty wave. Bless her. The Elder was walking around and around and around and around the table. Sometimes he stopped when he recognized a song. And then continued his solo performance around the table. It could have been worse…right?


We arrived 50 minutes early this time. In plenty of time for us to get prime parking him to pick out a prime seat (we didn’t have reserved seats this time) and to touch every square inch of the risers. He was running all over the set very comfortably, getting familiar with the various views from the risers, memorizing where cables haphazardly lined the floors so he didn’t fall on his face, picking out all his favorite vendors from the banners on the wall (Menchie’s, for one). I ran into his homeroom teacher and we headed off to our “assignment.”

“It’s time for you to help me with the programs!” I didn’t have to chase him too too much. I emphatically said that I was not going to chase him around this gym any more, and he hid behind some decorations.

It didn’t happen. He didn’t perform behind the tallest person. He didn’t pass out programs. He did at least eventually go get a program for himself from a door greeter. I hope that counts toward his grade.

He didn’t remove his shoes, and most importantly, he didn’t hurt anyone. Well, my legs were sore from being a human “squeeze machine.” (He sat on the floor between my legs and I secured him Temple-Grandin-squeeze-machine style.)

The best part of all? His teacher assured me that his participation wasn’t a big deal, she just wanted the family to enjoy the show. And we did. (The Elder through the lenses of the camera – great calming trick, btw) That very same teacher walked away that night with some sort of “Greatest Teacher on Planet Earth” award. Very well deserved.


So…how shall I prepare for next year?