So Kyle is in Summer School / ESY (extended school year)
He goes to school five days a week from 8:30AM to 2PM for
six weeks until mid-August.
Yes, yes. We know how lucky we are. That’s not what this
post is about…
🙂
Anyway…
So the school is in the same building as during the regular
year. He’s in the same classroom, but
with all new teachers and aides.
I’ll be honest. We don’t expect much out of the summer
program. Basically our hope is if it
keeps Kyle from having a big regression when school starts back up in September
we’re happy. My wife calls the summer programÂ
“maintenance”.
But school has been in session for week and a half already
and so yesterday wifey wrote a nice note to the teacher in his communication
book just asking how things are going.
Because at home Kyle has run the gamut the past few weeks.
Happy, mad, related, zombie-ish, aggressive, sleepy, seizurey,
etc.
So she wrote a note to the summer teacher asking what he’s
been like.
“Has he been happy for the most part, sad,
indifferent?” she wrote…
The note back from the teacher perfectly encapsulates my son
and his unique & challenging issues…
The teacher wrote…
“…as for Kyle.Â
He’s not happy or sad, more like indifferent. He does what’s asked of him and will
participate when I ask him to do something. He’s physical sometimes but nothing
that’s extreme and can’t be redirected. I do enjoy working with him and he does
try when he’s asked to do something.Â
Overall he is doing fine….”
So that’s my son in a nutshell and perfectly captures him.
He’s indifferent. But overall is doing fine.
And he’s been that way for YEARS. Just going thru the
motions at school. The biggest challenge always for his teachers over the years is
always finding what motivates him. And using that thing (popcorn, iPad, chips,
etc) as a reward to motivate him to do “work”.
But with Kyle his motivators change from day to day, hour to
hour.Â
One day he can’t get enough of a certain Dr Suess book. Then the next day he
couldn’t care less about it…but only wants this weird baby doll….then the
next day the doll sits on the floor all day, but he can’t get enough of the
“Elmo Visits the Firehouse” special on his iPad.
And even when you find the right motivator on the exact day
in the end they are not all that motivating.
He just doesn’t want to work. He’s indifferent. At home he’s
content to hold his breath & watch tv & play/watch his iPad all day
long.
And I get the impression that he’d be happy to do that all
day at school if they let him.
But they challenge him…as they should. And he goes thru
the motions. He gives them just enough, the bare minimum to get by…
And I know what some of you guys are thinking…Â
You’re his parents.  You should be doing more.  You should be challenging him more at home and pushing the school to get more out of him.
And a few years back, you were probably right.  Maybe we should have been doing more a few years back.  But now with the epilepsy thrown on top of the autism and all the medical challenges that seizures bring we just can’t do it.Â
We have to pick & choose our battles.  It sometimes feels like we’re going from crisis to crisis with Kyle.  Some are small crises (major sleepiness from meds) & others are bigger (seizures, dental surgery, etc), but in my opinion each of these get in the way of any possibility of any real progress at school. Â
And some of you might not even consider some of that stuff as a crisis. Â But to us they are. Â And sometimes it feels like each of these crises take up all the brain power that me & wifey have left. Â And when we have a calm non-crisis couple of weeks we relish it. Â And so the thought of pushing Kyle harder, or pushing the school to push Kyle harder seems crazy to us. Â
Anyway, Kyle hates it when we try to push him, when we try to “work” with him…
… if your kid shows a glimmer of interest in learning it makes it SO much easier to “work” with him on your own.Â
When you get something back from your kid when you use a particular teaching method (ABA, Pecs, etc), even if it’s just a glimmer of something, an iota of something it makes you want to work with him on your own outside of the “school day”.
We haven’t seen that from Kyle in a LONG time. He doesn’t enjoy learning anymore. With mom & dad he gets stressed when you ask him the simplest question like “point to nose”
I guess what I’m saying in that quote above is, that just like Kyle, the wife & I lack a good motivator.
I wouldn’t say that we are indifferent, but just like Kyle it does feel like wifey & I are going thru the motions sometimes.Â
And just like Kyle it does sometimes feels like we are doing the bare minimum to get by…(but in reality it’s to survive…)
But just like Kyle, overall you could say we’re doing fine…
THE END
Wow, I just planned on posting the teacher’s note and being done with it, but all this other stuff came pouring out.  Hope all this gibberish makes sense to y’all!
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I have a daughter on the spectrum who also consistently gives the bare minimum to get by. I get the feeling she thinks we are all ridiculous for even asking - after all she knows everything she needs to know now right?
Okay you know that isn't true, but convincing her is problematic. I think it goes in waves though - sometimes you just do your best to get through the day and then sometimes a new treatment,idea,inspiration strikes and you make some progress again.
Remember you are doing the best you can with what you have. Thanks for another great post.
Very much get this. I hate being asked what's my kiddo's current motivator because it changes by the minute and I've yet to find one other than promising to go to a four star resort he likes that really lights a fire under his ass. Since my husband refuses to let us just constantly go on vacation, we got nothing. But damn I milk that one vacation when I have it to use. LOL
Roo no longer wants to work with us either. Pretty frustrating at times & yes, you are SO LUCKY to have ESY. We only have a few more weeks till school starts back up in IN, not that we're counting down or anything, but it feels like forever. Hope you have an enjoyable, uneventful, rest of the summer! :)
Yanno.... the school of my kids send me links and android app links to stimulate them to learn and work more and have it hidden in educational programs. When I think back on my yourh when school was out...school was out and I got to play and relax and do whatever a child does. Im in no way triggered to have them "work" after school. Just like I would hate to relive a workday after I just had one. Just saying... kyle isnt a robot and neither are the two of you.
Grtz Wendy de Langen
I so get where you're coming from! My son, C 7y asd, is sooo hard to motivate. I'm trying to get him to poop in the toilet right now, and so far there is nothing that will motivate him to do it. Oh he likes new toys, new movies, tv shows, his ipad, but the moment I try to use them to motivate him, he "loses interest" and doesn't want them anymore. Soooo frustrating! As for working with him after school, I look at it this way: he's already in school for 6 h a day, 5 days a week, and he's 7y ols. That's a part time job. Let him come home and veg like we would if we worked 30h a week.
Yea fuck homework!
Finding that motivator is critical for all of us as humans. It's so hard for someone worth mental or physical health issues to find it. Thank you for your honesty, your blog makes me feel more human and less like an outsider in this world
They always say how much you should work with them but really sometimes I think they just need down time to be a kid and relax. We work 40 some hours a week, how would we feel if someone was pestering us to work on our weekends off. While I think we should always try to build on whatever we can sometimes I think our kids just need some "time off" as well.
I agree with Courtney. I'm a teacher (no children with ASD of my own) and I can tell you that there are loads of kids out there the same age as Kyle who are also indifferent to learning - he is just a normal boy in this case! I think the only difference is that it's easier to communicate with other children to negotiate learning with them. Don't stress about what he doesn't know, just remember all the stuff he HAS achieved and be damn proud of how far you've all come.
Let Kyle be Kyle and everyone will be so much happier - and I know I'd prefer a happy household over anything else.
You're his parents. Having three children on the spectrum has taught me that the most important job I have is to give them a safe environment in which they can be happy and NOT have to be challenged after going to a place like school where the purpose is to challenge. You do an excellent job of giving him a safe haven. I don't know why people criticize but you have the right attitude towards that as well... just wanted you to know your blogs keep some of us sane.
Darn was hoping I could see his real name on that note!! lol