(originally written & published on January 18, 2013)
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.
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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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!!!
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..
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.
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
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.
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.
i try never to think that far ahead, day by day in this household, only way i can cope!xx
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
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 :)
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!!
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
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. : )
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!