Friday, January 18, 2013

Not Much Teaching Going On At Home... and we are all happier...





(originally written & published on January 18, 2013)





I was just thinking about how little teaching / instruction goes on in our house.  I've written many times before about the king, and how he hasn't made any significant cognitive / educational progress in years.  I always say that he has the expressive & receptive language of an 18 month old.  And he's been stuck there for YEARS.

Now he's made some behavioral progress... and I've recounted some simple things that I consider progress that you can read HERE.

But speech, or knowing his letters or numbers, or refining his point, or picking up PECS or sign language... very little progress over the years.  The school tries their best... and I think they're doing a pretty darn good job... but not much progress... So when they say he had a "good day at school" what that means is behaviorally he was happy/pleasant, he ate all his lunch, and maybe he sat for all of the circle time.

And I've written before that when Kyle perceives that you are asking him to work ("point to eyes"  "where's the letter d"), he gets stressed out and breathes heavy, and will try to get out of the situation...especially when it's mom or dad asking him.  

And with all the medical stuff (seizures, weight loss, holding breath) & behavioral stuff (aggression, hyperactivity) we've been dealing with over the past year we've really stopped trying to get more out of him.  

And I think we are happier and he is happier.  

What we do instead is fill his out of school time with as much fun structured activity as possible.  And with all that activity it truly feels like there's not much more time in his day for "instruction" from mom & dad.

He gets out of school at 2:10pm.  On Tues after school wifey takes him to an OT swim lesson.  On Thur after school he has a special needs sports class. 

On Mon & Wed, thanks to his Medicaid waiver he sometimes has a sort of "play therapy" in the afternoons with one of his aides from the school.  On Fri, maybe wifey will take Kyle food shopping.

With all the driving back & forth from all of these get they usually get home at around 5pm.  Then he maybe has 30-60 minutes to unwind, watch some tv, before it's 6pm and dinner time.  I get home around 6:30pm-ish and they are usually just finishing up dinner.  And lately by 8pm he's ready to go upstairs to bed.  So that leaves 6:30pm-8pm as the time that I could be trying to "work" with him.

But I will readily admit that I'm tired from working all day.  And he's tired from a full day at school.  And so 6:30-8pm is more tv watching for the king.

The weekends, we have lots of outside activities that I write about often.  Music therapy & swim on Saturday.  And gymnastics & swim on Sunday.  And we get home from those around 2pm.  And yes, from 2pm on we have plenty of time to try to have structured play time with our kid.  But we don't.  We do laundry, have lunch, watch tv, etc.  Sometimes we will have family over... but not much structure or learning going on.

My wife has always been fine with this routine...but I would very often feel shitty about Kyle's lack of progress and would feel guilty about not doing more to "teach" him.

But when I would try to work with him it was SO FREAKING HARD... and would make me angry & depressed & more guily.

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"

And that still is true.  So we've kinda given up.  And we are all much happier for it.

Now that's not to say that we don't push him.  We got him potty trained.  We still try to push him to dress himself.  And to use a fork properly.  This stuff is a struggle too.  But this is stuff we will push him more on.

I guess you could say we push him on "life skills" at home but we are thru pushing him on academic / educational stuff.  If he doesn't know "point to the letter A" by now maybe he never will.  And if he knows it, but his point is off, then we will try to work on his point (another life skill?).

But if he knew the letter A but his point was off wouldn't that frustrate the shit out of him?  If he could read or type but couldn't because of some fine motor issue, wouldn't he melt down because of it?  But he doesn't.  So I don't think he is a Carly Fleischmann.  He is not frustrated with what he can't do.  He is just happy being who he is.  And enjoying his toddler shows & toys.

When Kyle is in a good place behaviorally things can feel kinda normal in our house.  Not like raising a typical 9 year old...but maybe like raising a typical 2 year old.

So for now we are going to continue doing what we are doing and not feeling guilty about it.  Letting the school do their thing as best they can, sending him to lots of activities after school, and on the weekends, and home time with mom & dad is down time...a time to chill & flap & watch tv & jump on his ball...and mom & dad will be there to feed him, tickle him, love him up, wipe his butt (another life skill we need to work on), and prevent him from climbing on the staircase above the sofa...

This post is all over the place.  But I guess I'm gonna end it here.

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26 comments:

  1. aww autism daddy...but you ARE teaching him! youre teaching him to be a happy part of your family and that its o.k to be who he is!!!

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    1. Hi...this post made me very sad...I also have a 9 year old autistic son whose age eguivalent is 6.5. He is verbal but still have many challenges. I started working with him aggressively using material I purchased online totalling $500 geered towards autistic kids only. He made so much progress, still far from where he needs to be. Don't wait for the school to teach your son.they set the standard so low for kyle. What drove me to take matters into my own hands was when the teacher told me he is not ready to learn how to spell at 8yrs old during his iep. Currently, he can spell over 50 words. Please do not give up teaching academic s to him..

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  2. Sometimes the best thing you can do for your child is just love them for who they are right here, right now. If you know his level for language is 18 months, consider everything he CAN do that is above the level of a typical 18 month old as positives. Kyle needs your support in the form of love more than he needs academic training. He may never know his alphabet, but he will ALWAYS know you love him. Sometimes that is all you really need. Keep up the great work with Kyle and than you so much for sharing your life with so many of us. We may all have kids on different levels of the spectrum, but we also deal with a lot of the same issues anyway. You are a real inspiration to so many of us.

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  3. when my two are home... actually... when all 3 of my kids are home (2ASD, 1NT)... I let them be them... no homework, no work, just relax and be themselves... watch tv, ipad, bounce on ball, whatever... i love to say... "this is not a dog and pony show... my kids are not dogs nor ponies." what i mean by that is, they are humans, they need down time, relaxing time, let their brain, and body do nothing time... why the heck should i stuff every min of their day with something... they learn just as much from just being... not everything has to be a forced lesson... they watch, they learn, they grow... i have been called weird by the way i raise my kids, but the proof is in the pudding... lol... or in my kids... they prove to me everyday that i have made the right choice for them... life needs to be enjoyed and lived... not always scheduled /over scheduled or over planned

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  4. I'm so glad you wrote this, because I'be been going through some Daddy guilt about this same thing. Nice to know we are not alone.

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  5. My only problem with this is what will he do when he is 25? 55? 80? Will he still lounge about watching tv and playing with the Ipad of the time? Will he want to do anything? What will happen to him when I die? Who will take care of him? Will they let him just lounge around all day watching tv? If he does that will he get food? Will he get his chicken nuggets or ice cream once in a while? Will they make him work? If I've never made him work will he then be a behavior problem because he doesn't want to? I know that their are schools out their that do their best but is their best good enough? With my son I have found the answer to be no and he is in a great program. But if the typical kids finish on page 203 and his class finishes on page 72 then he is still responsible for the material on those 131 pages because the next school year they both start on page 1 of the next grade's book. If he didn't master something they just skip it and moved to the next level. How much is he missing because of that? (Yes he has an IEP and that has to be mastered but I'm talking about other classwork.) I know it's easier now but will it be easier then? ~ Just the mish mash going through my head.

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    1. i try never to think that far ahead, day by day in this household, only way i can cope!xx

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    2. I actually agree with this but think different families are at different capacities just as much as each autie is different themselves. there's a coping spectrum as much as there's an autism spectrum. I dont think our system (everything from schools to roads and physical layout of communities to banking and food self-sufficiency) is set up in a way that we are going to be effective at setting our kids up the way we should. the infrastructure is wrong so no matter how much Autism Daddy and we want to do this, we cant because of how our resources to cope are structured. this is a serious problem for the future. I think autism will force a re-evaluation of this, but there will already be reprocussions for the human race. Anyways, back to stopping head bonking now... lol

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  6. Im the same way, spend more time correcting bad behavoir, dont throw things ur denting the walls! Dont rock on the the toilet, you'll break it again! Reminds me we need another toilet seat. Anyway this stresses him out and he gets mad, and mean, and more stemming. Homework is the same! I cant make it fun or interesting. He will however do homework for his older brother, like he is proud, look what I can do. I think because we as parents are the good guy, the bad guy, the one that does everything, they dont want to do school stuff with us. Out of couriosity you should ask one of the respite people if he does anything different with them. Josh likes to read with my dad, not all the time but more than anyone else. He reads at a 3rdtime grade level and I cry almost every time. Hes in 9th but for him this is awesome. He will tryhowever to writethe his nameMoms very neatlypretty for histhe one teacher, she isis very pretty. Also, I know he likes to push my buttons too, so I choose my battles ! Thanks again for sharing with us, it gives me more to ideas of things to do with Josh :)

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  7. I always say, find the success and fan or encourage that. Find things that he loves and is interested in and move him forward there...if he loves water and dirt, encourage that; he may one day help grow a garden. If he loves food, encourage him to help prepare it, and there are lots of things you can learn that way. We need to find meaningful things to inspire our kids to want to learn. And as you said, we need to love them for who they are and help them feel happy with who they are!!

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  8. i think when my Thomas gets home from school the last thing he needs is more pressure trying to cope with educational learning, we teach him lots of life skills but give him space after school to be who he is and let him relax with his favourite activities which is usually playing on his ipad, which in its self is educational in my view. You and your wife are fantastic parents in my view from reading your blogs so dont beat yourself up about it, happy parents happy child, happy household!!!xx

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  9. You're doing it right. :) Not that you need me to tell you that. lol

    You are loving your son with all your heart and doing the best you can for him while at the same time, meeting him on his level and being willing to accept him where he's at. : )

    You shouldn't feel guilty or bad about any of that. : )

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  10. I say if it works and you all are happy then go with it! My son is on the far other end of the spectrum but still needs OT and PT and he gets OT PT at school, and I take him for OT once a week and in the summer both. I also work with preschool kids who are both typical and special needs I have had the view from the start that every kid needs a chance to be that a kid and have some down time! And I think if you all are happy even better!

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  11. You know Kyle better than anyone else and obviously you are a responsible, caring parent. If this is what he is capable of right now given his cognitive skills and the programs, etc., out in the world...then I trust that just focusing on FUNCTIONAL skills (potty, eating, going out into the world and tolerating things and sometimes enjoying them) is enough right now. You can change your mind some where down the road if you want and if it feels right.

    Sometimes, as a speech therapist, I am frustrated when I work with a child who I know could do SO much more if only the other people in his life would follow through. Other times I am frustrated because parents think if the child has hours of my time each week the child will make miraculous progress. There needs to be a balance, and that place of balance is different for each child. It's not easy to be a parent with a special needs kid (I have them, too, although not autistic). So I understand both sides of the coin as well as that little ledge on the side of the coin. That seems to be where Kyle is right now. `Zennifer

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  12. Live for the now and just enjoy him...as he grows he will find that "thing" that connects with him and opens doors but until then teach him the skills he needs to know and not what we'd like him to know. I think until you are dealing with severity like this you can't understand. I know my daughter will not be "normal" enough to get a job, will not need to know her aphlabet or the history of England but she will need to communicate hunger, thirst and toilet needs so we'll start there..anything else is a bonus! Www.autismandlove.com

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  13. There is a HUGE difference between a family who gives their child a full rich life filled with amazing experiences and a family who says that there is no need because it won't make a difference. Sounds like you are doing everything that Kyle needs for a full life!

    When James was little and doing 40 hours a week of ABA, we refused to do more at home. He was allowed to be James and experience things in his way. Now, looking back, I see that we did the right thing for him because he isn't an ABA robot but a kid with many sides!

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  14. Im going through this right now- my son has ABA every day after school. He attends an intensive school for autistic kids. Its been two years and he does make progress..but two years of someone in your house every single day.... he really is starting to be less than thrilled when ABA time starts :)

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  15. I so agree our little bloke comes home from school and it is more than obvious how much it takes out of him that 6 hour day. We concentrate on getting him out the backyard he spends abit of time in front of the tv winding down and has a jump on his trampoline. We were at the supermarket the other day and he grabbed some beans (seeds) and asked if we could grow them. So we did. Now when he comes home from school he waters his beans makes sure there are no grubs or snails and waits patiently for them to grow. I have said to hubby many times i would rather teach him these life skills of how to grow a vegetable and feed yourself rather than some confusing mathematical equations that he may never have to use.

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  16. Before he passed away, my husband found that the best way to get our Autistic son to learn was to simply relax and find something that worked for HIM. A structured lesson plan may never work for him, but we felt blessed because we discovered things like the best way to get him to use his voice... was to stop asking him to talk and to start playing games that encouraged him to make noise. Stamping his feet, clapping his hands, popping balloons... Whatever made him not want to talk had its origins in his feelings about his making noise. Once he realised it was fun to make noise, he relaxed in other areas - like starting to talk.

    While there are a ton of experts out there - no-one knows Kyle like you do. IMO I see concentrating on things he enjoys and improving his behavioural issues is far more important... and if having some fun helps him to relax in other areas so you see improvement there, that's an added bonus to appreciate. My autistic son started using his voice properly just before New Years, and I still get a silly little smile at the opportunity to tell him to "Please be quiet" at bed time :)

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  17. Thanks for this post! My son has a genetic condition, and is very delayed (he is almost 6, but operates at about a 6-10 MONTH old level in most areas). No matter how much we try, he just doesn't get it....he doesn't grasp basic cause/effect, he doesn't seem to understand language. He doesn't seem to want anything, and he is very, very happy. He's been in multiple therapies and lots of home work ever since he was 3 months old and it really doesn't seem to help. I've been really struggling lately about how to figure out if I'm accepting who he is or if I'm giving up on him by not pushing more. It's a very fine line.

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  18. Ok from a personal view. I am higher up on the spectrum. I strggled every day for 19 years in school. Till this day I am in my 40's I still cant tell time, mutiply, or spell very goood.I cant change money. I do have great PTSD from some of the things that happened in school. I would spend hours and hours doing homework, and studying for a test to just fail it. I wish I would have had the opertunity to do some of the things that I loved to do, instead of spending until 10pm sometimes 11pm with my head stuck in a book. I wish I could have foucsed on the cretive side of me, and presuded things that I enjoy. I have survived, but struggled on the social aspects, and stay home most of my time now. I am saying think about what the child needs to do to survive and adapt, not to be the smartest person in family. Focus on your childs positive gifts, not thier failures.

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  19. If he likes to watch TV, then let a DVD do the trick. I recommend Leapfrog Letter Factory or the The Preschool Prep series. I also used "Your Baby Can Read." Mind you, my autistic son is high functioning, but he learned all of this quickly and in an entertaining way. I could point to an apple and say "red apple" till I was blue in the face and he wouldn't never get it. But he is addicted to the TV and his Kindle Fire, so if I want him to learn anything it has to be through his electronics.

    Good luck! I just found your blog and I find your sense of humor and outlook entertaining and refreshing! Take care!

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  20. I'm right there with you on this. I think part of it is just acceptance and realism. I see people all the time with kids and I can promise you that they have never read a parenting book or barely worked with their child to potty train or eat with a fork or put on clothes and those kids have just done it whether it be from desire on their part or peer pressure from a sibling.

    And, in the end whether or not my autistic child ever assimilates into the community he will be way better served if he can dress himself or use a fork or shit in the toilet than if he can "point to the A". And, I too am used to judgments of others often uninvited. I won't give the laundry list but it usually stems from two different directions. The first is that somehow my wife and I did something during pregnancy or after that caused the child to have autism and the second is that if we only did this then our children (I have two autistic children) would miraculously be made whole. Those folks can blow it out there ass until they have cared for my kids for a week uninterrupted for a week and had to deal with the lack of communication; scraping crap off of a five year old and sometimes off his bed or the furniture; or had a nights sleep interrupted because the child can't soothe themselves back to sleep; or had some stranger passively dismiss your parenting when your autistic child does something non age appropriate.

    I had my youngest son evaluated late last year and I was told he has the mind of a 9 month old. And, I think did YOUR nine month old behave as well as my son does? Probably not. And would YOU be brave enough to take your child out in public knowing full well that at some point you are going to be judged? I am fortunate. I have a very pacifist personality and I always seek to build consensus but I also look menacing so invariably I don't get the same looks or commentary that my wife gets although I'd love to. Not because I want to be in someone's face but maybe I can open a dialog with that person so they can stop acting like a jackass to other people.

    I realize my tone is a bit heated but while my wife and I were out this weekend we were separated briefly and she was confronted by someone over my five year old when he did something as innocuous as reach out and touch another child's balloon. And, this after my wife apologized profusely and attempted to explain why he can't control his impulses.

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  21. Everyone learns differently. I felt like by homeschooling using a cyber school curriculum, I would be able to pound enough knowledge into Charlie (www.reachingcharlie.blogspot.com) that I would be able to make him "un-autistic". Here is what I found: I was stressed out, Charlie was learning and then regressing, forgetting what he had learned. He could repeat it for a week or so and then it was gone.

    Not ever child learns the same way. Some of the best things that Charlie is learning now has little to do with abc's and 123's. It has to do with how to get through the evening without an hour or more of screaming and how to take medicine without fighting us for an hour to get him to open up and take it.

    Are you happier? If so, then keep on with it. Happiness means you get an A+.

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  22. Honestly as everyone has said, you know him best and know what he can and can't do. My son as Aspergers so we have always had speech but behavior and socialization are struggles. You have to let your kid be a kid at home. He is learning more then you will realize, and maybe one day he will have a break through, but now what he needs is to have that time to be a kid, and decompress at home because I am sure he works hard at school.

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  23. Marissa McRobertsMay 4, 2014 at 2:40 PM

    I understand this. My son goes to a very structured autistic support preschool from 8 am to 1:30 pm. There's very little down time there. For months We had his TSS at our home Monday thru Friday after school. My son got to the point where we spent the WHOLE 2 hours trying to coax him out from under the table to do any type of work. He dreaded her walking in the door. He loved her and loved playing with her but the structured work was just too much in one day. So I made the decision to end wraparound services and we've all been better for it. He's made so much more progress now than he ever did having all those hours of ABA. He still goes to his preschool, has speech therapy, occupational therapy, developmental therapy, and horseback riding but our home is a place to relax again. I know I made the best decision for my son and it sounds like you did too!

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