Tuesday, July 15, 2014

A Note Home From Kyle's Teacher Got Me Thinking...





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 program  "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.  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.  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. 

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... 

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. 

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.  

And some of you might not even consider some of that stuff as a crisis.  But to us they are.  And sometimes it feels like each of these crises take up all the brain power that me & wifey have left.  And when we have a calm non-crisis couple of weeks we relish it.  And so the thought of pushing Kyle harder, or pushing the school to push Kyle harder seems crazy to us.  

Anyway, Kyle hates it when we try to push him, when we try to "work" with him...

I wrote this in a previous blog post...

... if your kid shows a glimmer of interest in learning it makes it SO much easier to "work" with him on your own. 
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. 

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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23 comments:

  1. 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.

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  2. 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

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  3. 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! :)

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  4. 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

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  5. 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.

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  6. Yea fuck homework!

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  7. 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

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  8. 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.

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    Replies
    1. 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.

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  9. 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.

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  10. Darn was hoping I could see his real name on that note!! lol

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  11. Our son is in speech/ot/behavioural therapy and another special learning program on top of his regular school day. By the end of the day he is exhausted and doesn't really want to do anymore work. No motivator will help at that point. So we don't push it. I do at times feel guilty for not spending more time on "homework" but I want him to enjoy his life as well and not just work all the time. So if he would rather watch roller coasters and airplanes on youtube for those few hours after school I am fine with it.

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  12. My daughter is "high functioning" and is the same way. She glides through school doing the bare minimum. I believe she's been passed through a few things rather than passed a few things, but I can't prove it. "We modify the grades based on what she does" I've been told.

    I think they come to use indifference as a filter, and it's so easy and comfortable, why shouldn't they.

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  13. My son goes all year to school. This is a new class for him he has a small class with only 4 kids and a lot of teachers. They do push him to do his work and its funny he will do his classwork there but will do nothing at home. He has his things he likes and they change every minute it seems like. One day he will just watch Elmo all day long and then the next day he hates him. He has been getting great reports . He has 2 teachers that work one on one with him and has group time with the rest of the kids.
    Katie

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  14. This says so much for me. While my son is mild to moderate ASD, his epilepsy is severe. You've summed up our life very easily. Add in that I'm treating for cancer, my desires to push my son to the point of frustration and meltdow goes further down the drain. Thank you for this.

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  15. Yep, this is our situation (dilemma?). My child was in programs until they weren't serving him and then I had to homeschool him. I did this past the required age adhering as best I could to the requirements. Now, I think both of us are ready for informal and relaxed. My child is also profoundly autistic, non-verbal and epileptic. He has achieved an equilibrium and I don't feel compelled to disturb it by constantly challenging him at this age. I am very acquainted with his cognitive strengths and limitations by this point. If you read Pearl Buck's (older) book, "The Child Who Never Grew," she reaches this realization also.
    Daily life itself is such a challenge for our severely affected kids. They need some peace and leeway just as other kids and adults (like us!) do.

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  16. Dear AD, I have read most of your blog and I must say I trully admire you and you have all my symphaties for beeing realistic, pragmatic and for your overall common sense. Therefore I hope that my opinion will not sound cynical because it is not meant to. And of course it is just my opinion. And that one I have right now. So please do not take it as an advice but rather loud thinking of one of your readers.

    Anyway... why do we raise our children, why do we push them to be reach their potential? To help them become indipendent selfsufficient persons that can wrestle the life on their own and possibly raise their own children once I guess. Unfortunatelly Kyle will almost certainly never be person like this. No matter how hard you try, hom much you sacrifice and how creative you will be at coming up with right motivators.
    If he likes to learn than of course, go for it. But if he doesn't? You wrote it in another of your article. What is the actual point in spending tremendous amount of efford to get him from mental age 2 to mental age 3? He will be fully dependable on you or another good people either way. And it will be not because you didn't try hard enough, but because the God or coincidence or bad luck or whethever you call it made it this way.
    I don't say give up on him. But I really feel that in serious cases like Kyle, to enjoy them and keep them happy is much more important than develop them. At least this task has any sense and a chance for accomplishment.

    I have also positive message to you. You say thay Kyle is usually one of the most challenged even in the company of special needs kids. But worst doesn't always mean worst. At least he will probably never realized what was taken from him and how much different he is. Oblivion it may be, but he will be probably quite happy beeing. Definitely happier than you. Which, in a sense, might be quite heartening for you.

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  17. I hear ya sorry but I hated everytime they asked what my kids motivators were...I said leave the poor kid alone...hes got to know that whenever he likes something you use it against him... this is what attracted me eventially to RDI From an exerpt- Why we don’t use rewards,
    We are trying to form integrated neural networks through emotional memories
    When we make memories, we learn from what we have done, and we derive meaning and payoff from the experiences
    If we use external rewards, we don’t get a sense of competence, we don’t challenge ourselves, and don’t form the neural connections needed to process a meaningful tasks in the future.
    The focus becomes the reward, and not the sense of competence.
    One parent says it really well” other treatments can teach you to brush your teeth, RDI teaches you what to do when you run out of toothpaste.”

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  18. I think it is these kinds of choices - what battles to flight, when to push and when not to - that are the most isolating and loneliest for Autism parents. Only we know the full scope of experiences and details that lead to our decisions, and it is all too hard, too complex to try to explain it to someone else. This is when acceptance and support can be most needed.

    Thank you for voicing this so well.

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  19. First I have to say I love the blog Thank You. My son has Autism, but is verbal. He is also very honest. He hates school, the crowds,voices lights,etc...We have tried everything the last few years. After 2 years of picking him up daily we are know homeschooling. If we push him to go the meltdowns are so bad hospital bad. We decided to choose our battles school or mental health. We chose mental health. Our son does not do crowds so summer is tough when school is out, as we live in San Diego. We go to Montana or Wyoming for alist 3 to 4 weeks during summer months. Once again A Big Thank You for the blog and being so honest.

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  20. We all fall into the trap of judging our children using our standards rather than theirs. We assume they are not happy because they do not show emotions or commitment the same way we do.

    We assume they will not be successful in life because they will not hold down the jobs that we associate with "success". But these are our definitions of happiness and success, not theirs.

    I met a lawyer the other day who was successful using our traditional definitions. He spent his days writing the equivalent of legal disclaimers. He openly admitted that he started volunteering for charity because his 9-to-5 job contributed nothing to society.

    His volunteer work, on the other hand, made the whole world seem a little nicer for about 10 kids per semester.

    The legal work is making him rich, but also unhappy. The charity work pays nothing, but adds to the whole community. Which of these activities should we look up to? Which should we teach our children are worthwhile?

    In my son's school, there are dozens of children who seem indifferent to academics. There will be plenty enough people who judge them by their ability to hold down a job. We don't need to repeat that same (wrong) message.

    Being "better parents" does not always mean forcing our children to fit into someone else's mold. Sometimes it is doing "maintenance" just to prevent meltdowns. Sometimes it is being silly just for a laugh.

    You don't judge other people, so why let them judge you?

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  21. Reading this post is our life too... with our non-verbal ASD,7 yr old daughter. I think our daughter just doesn't understand why we want her to learn some of these things and she gets so frustrated. We pick our battles too.

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  22. Schools should get rid of homework! Period

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