ORIGINALLY WRITTEN & PUBLISHED ON JANUARY 23, 2012
Nothing could be further from the truth. And I don't have any problem with lots of complaining, that's what I created the FB Page and blog for in the first place... :-) But I did realize that it's been awhile since I wrote a blog post all about my son Kyle and what his life, and therefore our lives are like right now. I feel like a give people a better picture of Kyle on my Autism Daddy Facebook Page, but I thought it's about time you heard more about the King himself here on the blog.
And as I've written in a previous blog post we are going thru a relatively good stretch with his majesty right now. So let me paint what a good stretch look like in our world. And also in that recent blog post about "changing" our asd kids I gave some examples of some behaviors and everyone assumed that Kyle did all of these. He does not. He doesn't play with his feces or only sleep 2 hours a night...
So as severe as Kyle is I sometimes realize how lucky we are and how much worse things could be. And I always know (from experience) with Kyle that things could change at ANY time and we could have a "playing with poop" kid or a "he never sleeps" kid. So when we are in a good stretch we try to appreciate it as much as possible.
So without further ado...
Here's a typical school weekday in the life of mom, dad and Kyle right now. Please note that this is subject to change at any time.
around 6:45am -- We hear Kyle stomping around in his room and/or our Autism Service Dog Paula shaking herself off. And one of us runs in immediately to check that he's dry and say "Good morning Kyle. Let's go pee-pee on the potty." And take him right away. Sometimes he pees then, sometimes not. We recently got him re potty trained for the 3rd time back in September so we need to keep this up.
He had some major eating issues and had lost alot of weight so we've kinda given up on trying to get him to formally eat breakfast at the table. He's more of a grazer. So we let him graze throughout the morning. He eats like Cookie Monster. He doesn't have a great pincer grip. So cheerios are flying everywhere and Paula is following him around like a vacuum cleaner. A few more trips to the potty just in case. Mommy & daddy are usually yelling at each other about something during this stretch.
Me: "Where's his lunch box?"
Wife: "Where it always is!"
Me: "Which is where?!"
And Kyle will usually be happily walking around, swinging on his swing, playing in his room, coming back for more tv and snacks, and getting into EVERYTHING. Opening drawers, putting iphones in his mouth, breathing heavy/ holding his breath, jumping on the couch, climbing on the couch, etc. He gets his meds and supplements in the am, He currently gets VERY SMALL doses of klonopin & thorazine (please no judgement! they've helped his behaviors IMMENSELY and he is MUCH happier since being on them starting in August 2011) along with a fish oil pill, multivitamin and a probiotic.
One of us will get his lunch ready...any variety of the following... hot dogs, cheese, nuggets, fries, strawberries, blueberries, popcorn, potato chips, bacon, etc, etc.... (please no judgement we did the gfcf diet for over a year and treated him for yeast with no impovements)
The other will get him washed and dressed. He can do some of the dressing by himself with ALOT of prompting. Sometimes during the getting dressed phase he's too hypnotized by Elmo to focus so we have to turn the tv off to get him to focus. "Pants on" "arms through" "pull socks" etc etc
7:55am-8:00am Daddy finally gets Mom & Kyle off. Mom drives Kyle to school. We could get a school bus but this is our choice which I explained in this blog post.
8:00-9:00am Whew. I've got an hour to myself before I have to leave for work. My normal work day is 9:30am-5:30pm or 10:00am-6:00pm.
8:10am-2:10pm Kyle is in school. It is an 8:1:2 all autism classroom that uses a TEACCH/ABA model. He also has his own 1:1 aide. His service dog does NOT go to school with him. I explained why in a recent blog post.
"Does she go with Kyle to school every day? No… And she kinda can’t. Kyle is non-verbal. Paula accepts commands from us (mom & dad) and we can’t be in school all day. So technically she can’t be with him in school all day. She does go with the wife sometimes to help drop Kyle off and pick him up."
My wife is a stay at home mom (SAHM). I explained why in a recent blog post.
So while Kyle is in school these days she's running errands, shopping, calling dr's, therapists, setting up his after school schedule, cleaning up the house, etc, but she leaves herself some time for going to the gym and going out to lunch with other autism moms.
2:10pm-6:30pm The time from when Kyle gets out of school at 2:10pm til I get home from work at around 6:30pm is when mommy really earns her money. She's one part chauffeur, one part therapist/playmate and one part mommy. Basically Kyle's got some activity to do pretty much every afternoon. Because of his breathing/ breath holding issues his school forced us to see a behavior specialist 2-3x a week for an hour after school which thankfully his Medicaid waiver is paying for.
Then one afternoon a week he goes to aquatic occupational therapy in a pool (which we pay out of pocket for and I fight my insurance company for 70% reimbursement), one day a week he goes to a "special needs movement" class at a local "Y" by us, and 1-2 days afternoons a week an ABA therapist comes to our house for one hour sessions (that we pay for and don't get any reimbursement).
And amazingly between all this activity there is still some time in between so that's when mom & Kyle will sometimes hit a fast food drive thru (especially if she checks and sees that he didn't eat his school lunch), sometimes go to the park/playground in nice weather, and sometimes they just go home and hang out together. This is when there's some of mommy singing and reading books and attempting to entertain the King...
Usually most of these afternoon activities will finish between 5-5:30pm and when I pull up to the house at around 6:30pm I can see mom feeding Kyle. Dinner is the one meal where we try to get him to sit at the table and unfortunately that sometimes means strapping him in. It's gotta be done or the kid won't eat anything. And yes the tv is on during dinner. Either the living room tv is pivoted so the king can see it from his dining room seat...or we put a show on the ipad. The losing weight thing really took a toll on us, so if he's had an especially bad appetite day the wife might even be fork feeding him his chicken or hot dog or whatever.
As soon as i walk in the door, after all the kisses and hellos and the taking the dog out for a quick walk, the kid is grabbing my hand and motioning that he wants to be unstrapped from his seat. He NEVER asks the wife this. He's playing me. And I usually want to give in.
Me: "Babe, he wants to get up. Maybe he's eaten enough."
Wife: "He's eaten literally nothing all day!"
So I excuse myself and let mommy finish the torture that is dinner and go upstairs to change into my pajamas. We are a PJ household. The earlier we can get in our PJ's each day the better...and this goes for all three of us.
6:30pm-8:00pm -- I come back downstairs and take over hanging with Mr. Kyle and lucky for me that is when he is at his most stimmiest! :-) He's still been very happy lately...but very stimmy for Mr. Kyle means playing with his saliva, placing it on things, going into the bathroom sink
In a strange way this is his way of winding down...kinda like the storm before the calm.
All this while the tv is on with Sesame/Dora/Jacks Big Music Show playing in the background like the soundtrack to our lives. While he's stomping around like this some nights mommy will walk up with another forkful or two of dinner and try to get a few more calories in him. And he usually opens his mouth and accepts.
A few times a week the wife will cook an amazing meal and we will attempt to eat now, while Kyle is still awake, but it usually means one of us has to play goalie, pulling him off the sink, out of the tub, off the desk, etc, etc. So sometimes we eat seperately. Her now and me after the king goes to bed.
Lately around 7pm I've been giving him his second and final dose of klonopin along with 300mcg (micrograms) of melatonin. Then around 7:45pm each night I will take him upstairs to his bedroom and attempt to begin the bedtime routine. It's been pretty good lately. We put on the Sesame classic "Sleepytime Songs and Stories" and sometimes he's out by the end of it which is around 8:15pm. If he's not out by the end of it and he shows no sign of slowing down I'll break out the big guns. I'll give him two 3mg (milligrams) melatonin pills and usually with this he'll be out by 8:45-9pm. Now the 15-20 minutes before he actually falls asleep can be absolute torture sometimes... lots of flopping around like a fish out of water... lots of getting up and running to the window, sometimes some window head banging, lots of heavy breathing, lots of jumping up to turn on the light, or to run to the bathroom for more hot water out of the sink. Some nights I literally have to yell "ENOUGH!" and it actually works, it stops him dead in his tracks and he settles down.
But regardless of how he falls asleep, he's usually asleep by 9pm by the latest. And then I watch him breathe normally for the first time all day...
Then from 9pm on the wife and I are on our own! Woo-hoo! Usually that means eating dinner on the couch if we couldn't or didn't eat before I brought him upstairs and watching a show or two on the tv. On most nights I'll be laughing at a sitcom at 9:30pm and look over and see the wife passed out on the couch.
I'll watch a little more tv... maybe help with some dishes or laundry... Mess around on Facebook or the Blog with you all... And before I know it, it's 11:45pm and I'm dragging the wife off the couch to bed for the night.
If we are lucky the king will sleep til 6:45am... and he does maybe 80% of the time... the other 20% of the time he's up as a pup at 3am...and the whole routine starts over again...
So that's our typical weekday these days. And compared to the summer of 2011 which I recently began calling "The Summer Of Rage" where he had multiple violent meltdowns per day, we've been going thru a really good stretch.
As you can see there's not alot of down time so when there is we really aren't "working with him" on skills or anything. We are just living and letting him enjoy his downtime. It's been so long since he's made any major significant progress that we are lately just happy that he's happy. That's most important to us. And to be honest, we are both exhausted in the evenings anyway so there's not much time to work on formal things.
But all in all Kyle's been a very good boy behaviorally and in his own weird way has made progress. He's been very happy and loving and likes to hug and kiss and climb all over me sometimes. And even the bad things he does can be looked at (by us) with a positive spin...like he notices more things now. He is in to EVERYTHING. He was obssessed with the Christmas tree, always playing with it and putting the ornaments and lights (!) in his mouth... but at least he noticed it. There was a couple of years where he didn't notice things as big as that. He's always opening up drawers and grabbing things out of them (and of course putting them in his mouth) but at least he's noticing things which is a positive!
As usual, this blog post is all over the place and much longer and more rambling than I ever expected. Basically I just wanted to write a post to say that even though I complain on my blog & FB Page about autism alot and my son some, I just wanted to give you a different window into our world, our weekday world to show you that yes, it's hectic and yes Kyle is non-verbal and severely autistic but when we are going through the good stretches and tag teaming as parents it really is somewhat manageable and happy in our household.
But when the bad stretches come with Mr. Kyle... and they will...they always do...storm clouds are coming, I can feel them.... when the bad stretches come all bets are off and our household and lifestyle can be totally different and traumatic. It's not good, but it's true, when you only have one kid you live and die by his moods. When he's in a good place, we all kinda are...and when he's going thru a bad patch of weather, it's hard for mom & dad to stay sunny, if you know what I mean...
Now the weekends... well not that's a whole nother story with a whole nother routine that I'll cover in a whole nother blog post... :-)
So for now I'm gonna end it here...
The End... Over and out!!
I'll leave you with one more pic of the king, bouncing on a ball while the ball is bouncing on a trampoline... now that's talent...
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