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Typical text back & forth between me & wife…
915am
“How was the ride to school?”
“You don’t want to know… but once he got there he seemed happy…”
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307pm
“How was his day at school?”
“They said ok til the last hour, but they survived it”
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545pm
“Leaving work now, should be home 630ish”
“Good, cuz I’m going to sleep as soon as you get home. Rough afternoon…
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So that’s currently a typical day in our lives with Mr. Kyle these days.
The key words are rough, survive, and happy.
My big question of the day is how can Kyle make any progress if he’s not happy. As I’ve stated in previous FB Notes, Kyle hasn’t made any real progress is years. And people (including you guys 🙂 are always saying you should do social stories or you should do PECS or you should try this or that.
But I feel before we can try anything we need to get a somewhat happy cooperative kid who kinda wants to learn…or at least wants to sit still for more than 9 seconds… or at least a kid who has some real reinforcers that he will work for.
When Kyle thinks you are asking something of him, making him work. Even something he knows like “point to eyes”, he gets this pained look on his face and he starts breathing heavy and he will try to get out of the situation.
So much of our lives the past few years are let’s get past these stomach issues and then when he’s in a good place for awhile we’ll start _____ . Fill in the blank (potty training, dressing skills, etc). Let’s get past these tantrums and get back to a happy kid and then we’ll start _____.
And the school kinda does the same thing. “Kyle had a great day” doesn’t mean he mastered 3 things in ABA or pointed to his name in circle time. It means he was happy all day, didn’t tantrum, and ate all his lunch.
It’s kinda been going along like this for the past 2-3 years in school and at home. He does do a little better in school, but the skills he learns in school rarely if ever make it to our house.
So the question is… should you ever get to a place where you give up on “teaching” and just work your hardest to have a happy kid? I don’t mean forever… but how do you expect to see any progress during the crazy times? And what happens when the crazy times take over?
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This note is all over the place. I’m gonna end it here. I might have more to say. If I do, I’ll add it in later and/or add it to the comments…
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We're regularly putting off stuff too, waiting for our son to not be sick (if he goes more than a week without catching a cold, developing a sinus infection, stomach virus, serious bout of constipation – that's a lot). Or waiting for when our schedule is more consistent. Or until he passes some mysterious point of comprehension. He's doing really well at most things, so far as what he does in therapy – it's the at home, day to day stuff that's a challenge – and we spend nearly all of our time at home with him trying really hard to make sure he's content. Yes, we're teaching him a lot of the time – thank goodness he likes a lot of "educational" type toys, etc. – but really, it's about him being happy. Because he won't do anything without a fight if he's not happy. One of our therapists said something to the effect of, when he's in a good mood, he'll jump through hoops for you. When he's in a bad mood – you're going to have to get creative, or give up. He also senses when he's being asked to really work – he takes it pretty well from his therapists, if he's in a decent mood. But I have to be really careful when I ask him questions, like "where is the X" in a book, or "what's this?" while pointing t something, trying to get a response. His therapists have learned that he has a need to correct if you say something that's wrong – so if you point to something green & say it's purple – he'll correct you – thereby, getting him to practice saying purple, which is a word he has trouble with. Or if he won't complete a task, the therapist will do it for him – completely wrong. His OCD kicks in & he'll correct it & finish the dang thing. Sometimes his having a contrary gene is a good thing.
But I ramble. I just meant to say, I relate to a lot of this. But I can't ever not ramble.
Hi. Sorry to bother you again. I saw some pictures in your FB. You see, our son is limited in his intake of sweet junk foods like chocolate, ice cream, pirouline, cookies, etc. We have observed that he gets hyper whenever he has too much of sweet junks.
Lisalt
Hi, Autism Daddy. It was a struggle at first during his Kindergarten years to learn but we saw that there is something there where we can expounded. You see, we believe in "The mind is a terrible thing to waste." Hence, we teach him. Our boy is still not as verbal as NT kids of his age or his younger brother and sister but he has something up there. He can think because we do not want his mind go to waste. I saw your other post about Son-Rise but in our case, we do constant teaching. If you will see in other videos below, he has also receptive language problems but he tries his best to understand. Sometimes, he can not control his happiness whenever he wins in his games as well as when he loses. It is so much to bear for him to lose. Still, he goes to youtube.com and tries to understand how to win the game and executes it again in order to win. You can find him here: http://www.youtube.com/lisalt or type, axell autism. Hope it will help you.
Lisalt
I have a son who is nine, non verbal with autism. I am a ABA therapist and speech therapist by degree but my "mommie" is what comes out in several of my programs for my kids. My son hit a wall with tradtional ABA at about 7 years of age. We switched to verbal behavior until this year. Several therapist told me we would hit a wall with ABA so we stopped. We did not stop all academics goals but did them when we could find a natural fun way to incorporate them into his day(lots of them are done in the bath tub, lol). This approach has given us back our Happy boy. Sometimes I think we get caught up in what we need to do for them but i have to remember he is a child first. I know what you and your wife are going through, you know your son best and trust your "feeling" through this process. Just know you are not alone in this journey!
You know Kyle best, and you do the best for him. What do I ultimately want for my two boys (one neurotypical and extremely intelligent, the other moderately autistic and well behind his peers academically)? The same thing–I want them to be happy. I have worked with severely autistic children and adults, and I know you have a challenging life day after day…but your love for the king is clear. Keep the faith, and know you are doing the best by him.
Autism Daddy… I first just want to send you a virtual hug to you and your wife…Today your blog is all over the place which is not necessarily a bad thing…We all have so much on our plate day in and day out.. I think extreme focus on one or the other is not going to help… I have found that Balance… and flexibility are big keys with my daughter Aly….and know this you and your wife know your son better then anyone so at times we as their voices and being their parents have to take it one minute at a time…Personally my daughter did not talk till 6 maybe 7….she did not say she loved me on her own till 11… I know that good days or bad I was constantly trying to reach her…I think you and your wife need to give yourselves more credit…and celebrate those victories… Don't sweat the small stuff it is all small stuff…You have this amazing boy that teaches you each day how to see the world differently and that is an amazing gift!!! So hang in there
I understand and once again, and right there with you on this…
Kate Wells