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 Carpe Diem: at least I’m seizing something

  • January 6, 2012 10:05 pm

If you never read any more of this blog post of mine, you MUST, without fail, follow this link and read Glennon’s blog post.

I’m glad I took the kairos time (that will make more sense if you’ve read her post) to read this raw and beautifully written article. I think all parents should read it, but especially the parents of special needs children. Its message, I believe, goes further to affirm us as we face the very different challenges on a daily basis.

I get caught up in the guilt of not “enjoying every moment of their childhood before it’s too late.” I can’t honestly say I loooove parenting. It’s not my gift. It’s the hardest thing I’ve ever had to do. But it is the most rewarding thing I’ve ever done. I do loooove being a parent, or as Glennon says “having parented.” I have an influence on them, not just as their parent, but the one and only role of being their mother. I’m way far from perfect, but at the end of the day, I’m learning to pat myself on the back for getting though another day – for finding the one (it’s usually more than one but I like to set myself up for success) instance of hope, glimmer of beauty, evidence that something I tried to pass on actually did, proof that some therapy I paid for was worth its investment.

It reminds me of my favorite clip from the movie “The Back-up Plan.”


You know, when I really think about it though, I’m actually very lucky because statistically, I feel like I have more opportunities to seize moments of hope and beauty. On those days that I’m up to my eyeballs in tantrums, strewn legos, and broken computer peripherals and I look at the clock and it’s only 8:30 in the morning, I need that moment when I hear the distant, unprompted toilet flush. I don’t know if that makes sense or not. Maybe a story would help illustrate.

Today, we took The Skipper Dog to the vet. It was quite an intense appointment (about a different kind of seizing :( ), so both me and The Hub went and of course had to bring the kids. We left them in the lobby with the directions that they were in charge of only themselves, to make sure they made themselves make good choices. About after 15 minutes of being back with the vet, I heard The Elder screaming in the lobby. I went out there and he was sitting criss cross applesauce on the bench screaming:

E: “Y is touching me!”
M: (to The Younger) “Don’t touch him.”
Y: “But I want to sit here.”
M: (to The Elder) “Choose a different place to sit”
E: “But that place has a scary thing, and that place is too close to the vent, and that place is touching that plant, and that place is near the magazines.”

The Younger couldn’t really top that so (with maternal encouragement) he moved to a chair on the other side of the lobby. I was able to return to the patient room without missing too much of the vet’s testing-results spiel.

Let’s list the obvious triumphs. (triumphs that I must say make me one proud mama!)

  • I was comfortable leaving them both in the lobby (not without my super sonic ears open to eavesdrop on their every word)
  • The appointment was nearly an hour long and I only had to intervene once.
  • There was 15 minutes before the onset of the intervention.
  • The intervention was pretty painless and straightforward.

Now the not-so-obvious triumphs.

  • The Elder was sitting on the bench – and criss cross applesauce to boot. (This would be opposed to wallowing in the floor or running outside in the parking lot)
  • He verbally expressed his case of why he should be allowed to remain where he was seated. (as opposed to physically expressing his case with his fist or teeth or saliva)
  • The Younger complied on first request (not without whining, but without any oppositional defiance)

Finally the triumphs that could easily slip away if I wasn’t intentionally seizing them.

  • The Elder had all of his clothes on, including his shoes.
  • Both kids were wearing their glasses at all times.

Therefore in a single event, I’m able to seize greater than 100% more triumphant moments! Sometimes all I can walk away with is the fact that “Both kids were wearing their glasses at all times,” and sometimes I can’t even claim that moment and must settle for “We found their glasses before we left, flung atop the the silk tree in the lobby, and eventually repaired them, at no additional cost.” Maybe I’m crazy, but that makes me feel lucky!