Friday, May 29, 2015

Potty Training (again), Day Four

SUCCESS!!

Well, sort of...

Evan came right home from school and pooped on the potty!! Jayme did a great job talking with him last night and reassuring him that I would be here to help him if needed, so that going on the potty wouldn't seem so hard. And, VOILA -  it worked!

Until he heard that he had to keep going on the potty or we would take away his electronics again.
"And turn off my robot?!", Evan asked. (The robot potty, of course, that he still thinks we are building.)
"Yes", I answered.

So, he has been hysterically crying ever since and yelling that he can't live here anymore and that I need to "change the plan!!!". Ironically, he won't tolerate the TV being on right now, because he has self-imposed the continuation of the ban even though he had success and earned his electronics back.

Take some of that back- now he is asleep, in his post-tantrum shut-down mode.

Sigh...

This is how messed up things can get with autism. From this great success came great grief. And now our night is - yet again - ruined. Tonight, we are supposed to all go to watch my oldest in the school play, but I can tell you right now that either myself or Jayme will be forced to skip it to stay home with Evan. Jayme has missed all of Lily's band concerts and Shayna's dance recital this year; in all honestly, he probably doesn't mind that much, but he didn't get to see the culmination of all their hard work, and more importantly, the girls needs and activities ALWAYS take a back seat to Evan's needs. Nope, it isn't fair, but these are the hard choices we have to make.

I'll be off for the weekend with family commitments, so Jayme will get to see how this potty thing plays out over the next two days. I'm going to take those days off from thinking about poop, and will update our progress next week.

Sigh...

 

Thursday, May 28, 2015

Potty Training (again), Day Three

No luck, as Evan likes to say.

However, I am enjoying not having the TV on constantly, so there is that. Evan is still looking for a new family, by the way, but he was less angry today and did not have a tantrum, which is also good news for me.

There is also the added benefit of his creativity blossoming as he continually tries to negotiate with us on the terms of this potty training, and as he tries to think of ways around it.

Here is the phone conversation I had with him on my way home from a meeting tonight:

Evan: Mom, do you know how to build a robot toilet? It's a robot that follows you around, and at night it turns into a regular toilet, but in the day it will follow you and you can pee and poop in it. You just need a robot chip from Home Depot, robot parts, a wire, another wire, and a blow torch. I think it would be easier for me.

Me: WOW. That is an amazing idea. But, no - I do not know how to build a robot toilet.

Evan: Oh. But it's easy, you just need to get the parts.

Jayme told me that this conversation had started between he and Evan approx 1 1/2 hours earlier. And it's pretty amazing, isn't it? It actually shows his capacity for higher level thinking and problem solving.

Only...
He really thinks we can build it. As in, this is not pretend for him. So, that's a problem.

On to Day Four...

Wednesday, May 27, 2015

Potty Training (again), Day Two

I'll just sum it up by saying that Evan is looking for a new family that will allow electronic use. He would prefer 2 Moms, and I would applaud his acceptance of diversity except that he is embarrassingly vocal about his preference for "peach" colored skin and un-accented English - this once led to a not so comfortable deli line conversation with a middle aged man who enthusiastically agreed with him.

Anyway...
If you know of two woman looking for a 6 1/2 year old that is NOT potty trained and WILL allow electronic use, I've got your kid. All he wants to take with him is one book, shirts, and pants :)

Tuesday, May 26, 2015

Potty Training (again), Day One

I never thought I'd be here, at this place where I'm still trying to potty train my 6 1/2 year old. If you've been reading my blog then you know that Evan does not poop in the potty; we've come close once to getting him there, a few months ago,  but he totally regressed and it's as if the 11 times he has pooped in the potty don't even exist. To be clear, Evan doesn't have "accidents" - if I were only so lucky - he poops in his pants without even trying to make it to the bathroom and frankly, he doesn't give a damn.

I can't tell you how many hundreds of dollars I've spent on underwear or how many hundreds of other times I've washed poop out of underwear. I've scrubbed poop out of our carpet and I've thrown away socks and pants because...well, really? Do I have to explain why?

So, here we are on day one of our latest attempt to train him. To be honest, their is little training going on...it's more like a mental adjustment.  Essentially,  we started after school today with depriving him of anything fun. No electronics, no games, no rough housing with Daddy - until he poops on the potty. He can earn everything back if he is successful, but the next time he poops in his pants it all gets taken away again. Not nice, is it? Desperate times call for desperate measures as they say, and THIS SHIT HAS GOT TO STOP!

I must say that the first part of our afternoon was pretty easy. After his tantrum, that is, which started as soon as we got in the car after school, escalated as soon as we got home, and found him sobbing in his bed until he fell asleep. Who knew this was the trick to get him to fall asleep in his bed?!

He woke up 2 hours later, no less mad and hungry to boot. The rest of his evening has found him at times crying, raging, and almost happy if he forgets for a minute or two why he is angry. He is currently in our room saying repeatedly, "I can't stop thinking about electronics!". He won't get pajamas on and has left a path of destruction throughout the living room in the form of thrown toys, a tipped over chair, and ripped magazines. I can't be bothered to pick any of that up tonight.

And, no - he hasn't pooped and hasn't even tried.

Truly, I hate that I even have to put this struggle out there. I hope, though, by doing so I can reach at least one person who might say, I'm not alone, and enlighten others to one of the many unseen hardships of autism. While Evan's classmates were busy doing homework, sports, playing outside in the gorgeous weather, he (and I) have been inside dealing with all of the above. Stay tuned for more potty training (again) updates...

Thursday, May 21, 2015

As Seen On TV

Like many people with autism, Evan has intense fixations on things. He is unusual in that his fixations change frequently, can last hours or days,  and can be real or imaginary. His current fixation is the Chop Wizard, thanks to television infomercials. The Chop Wizard? I can't make this stuff up...

Evan will see things he wants on TV, but he won't usually latch on to things with as much intensity as he has given the Chop Wizard. We can't (and don't) indulge him with whatever he wants, and I waited several days before ordering the Chop Wizard thinking that this fixation would pass, but it only became more intense and - don't judge me - I ordered it. Once it arrived, Evan set up his "kitchen" with the Chop Wizard and hand sanitizer and got right to work making fruit salad for our vacation at the end of June. No, he doesn't care that it will be rotten by then. He even washes the Chop Wizard himself in the bathroom sink after he uses it.

I know, getting him the Chop Wizard was wrong on so many levels...he's spoiled, it's wasteful (because he doesn't eat anything he chops), and, hello, it's DANGEROUS. There are very sharp blades in this thing. My parenting standards have fallen SOOOOOO far.

This is the perfect example of a battle we choose not to fight. Why? Because we fight so many, and we feel bad, and many days it is so hard for him to be happy (like today, and yesterday, and the day before that), and it's a Chop Wizard - who wouldn't want one? - that I'll donate when he is done with it.

Evan's fixations started very young, and would become most obvious when he would sleep in his crib at night; each night would be something different and not at all kid friendly - as in a wrench, for example. One night (I'm not proud of this), I let him take a small bag of trash into his crib. O.k., you're all cringing...it was tissues in a tied off plastic grocery shopping bag and he wouldn't let go and it was much more appealing for me to let him fall asleep with it then to deal with the tantrum that taking it away would create. Jayme freaked out, of course, so I waited outside Evan's door until he fell asleep and then I took it away. The flashlight fixation soon followed, and so we purchased batteries in bulk from BJs. The little toy guys were the most annoying fixation because we wasted hours looking for them when they were misplaced and I can never get that time back. Anyway, it appears that we are now onto kitchen gadgets. Too bad I stink at cooking.

It's an I'VE GOT TO LAUGH OR I'D CRY kind of world here, made a little more complete with the Chop Wizard. Chop away, Little Man, but please PLEASE watch your fingers...I feel like explaining this to an ER doctor would be a little stressful.

Saturday, May 16, 2015

We Were Supposed To Be At A Birthday Party

 We were supposed to be at Evan's good friend's birthday party. Instead, Autism hijacked his brain about 30 minutes before we were to leave. How it happened is trivial and irrational at best, but once it grabbed on, it created a crying/raging mess and wouldn't let go. How it ended was in my arms asleep (his hands had been playing with my earring). I will add this party to the List of Lost Experiences, and keep my fingers crossed that the Autism monster stays a slumber when Evan wakes up.

Thursday, May 14, 2015

Zzzzz....

I know, this is a horrible picture of Evan, and one day he'll hate me for posting it; however,  we've got big sleep changes coming up in our house, so his weird sleep today was good timing for my blog.

Many, many kids with autism have sleep issues, and Evan is no different. We are luckier than most in that once he is asleep for the night he usually stays asleep. I've been up a few times with him between midnight and 2 am, but mid-night wakings have been, mercifully, few and far between. Our biggest issue is that Evan sleeps on the floor our our room...a habit we are one day away from breaking, but more about that later.

Evan has never slept more than 8-9 hours at night (for reference, a child his age should be getting 10-11 hours a night) - EVER. Up until he was 5 1/2, he compensated for this with big afternoon naps. Full time preschool and summer school before Kindergarten helped wean him off those big naps, but we would typically see a long weekend afternoon slumber for up to 4 hours about once per week, that has been gradually fading. Now often what we'll see is a couple of hour snooze following a tantrum or meltdown at least once every 2-3 weeks; occasionally this type of slumber will continue right through bed time, maybe with a groggy hour awake for food around 9 pm, and he'll sleep right through to the morning. We know when this happens that his body is catching up.

Mornings for us, by the way, start anytime from 4:30-6:30. He has slept until 7 am maybe 3 times. His current body clock is set to 5:30-5:45. No, he does not sleep in on the weekends :)

Currently, Evan is really struggling with allergies and/or a cold, plus bacterial conjunctivitis. His eyes have really been bothering him, and late this afternoon as his therapy was winding down, he had a flare up of his eye symptoms that ended with him barely being able to see...his eyes red, swollen, and watering. And then, he laid on the floor and fell asleep. Just like that.

He slept through being moved to the car, a trip to and from music lessons, 45 minutes in the car waiting during the music lesson, and being moved from the car onto the couch (thank you CrossFit for the soreness in my legs while hauling him up and down the stairs; I can't wait for the day when he feels light!). 3 hours later, he is still asleep. He'll probably wake up enough to pee and get changed in his pajamas, maybe have some food, then be up tomorrow around 4:30. Lucky me.

Then....
Tomorrow night at 9 pm, 3 BCBAs (board certified behavioral analysts) show up on our doorstep to help us establish the Evan Sleep In Your Own Room plan. They will stay until he falls asleep in his room whether that be 10 pm or 3 am. Lucky me.

Stay tuned to see what happens with our new sleep intervention, but the take away message for this long post is this: there are SO many layers to autism, so many things that affect these kids that you can't see. Autism Mamas and Papas are TIRED, on top of everything else, and typically this exhaustion comes without the knowledge that there is an end in sight...like when your babies are little and you know that they'll sleep eventually...only our eventually never came.

My mantra for this came from my sister, who once told me something she had heard: you can sleep when you're dead, which might seem a little dark but it seriously is what I tell myself. In the meantime, there is coffee. Strong roast. With lots of sugar. Don't judge me :)

Sunday, May 10, 2015

Happy Mother's Day


My heart is full because Evan made me a Mother's Day card yesterday all on his own without prompting. O.k., today he wouldn't give it to me right away and he never said "Happy Mother's Day", but I have a piece of paper with the word MOM on it and 6 hearts and that is good enough for me.

My heart is full because I spent a long time on the couch this morning with Evan just needing my skin. Times like this when he just inhales my scent is a good reminder of how primal and strong a connection is between a Mother and her child.

My heart is full because my husband and two girls think I am the best wife and mother they know. Their first hand experience of living with another wife/mother is, thankfully, non-existent, but I am grateful nonetheless.

My heart is full because 3 of my special needs Mommy friends went out of their way to wish me a Happy Mother's Day; we all agree...our lives are better because we have each other.

There are many other reasons that my heart is full today, from spending the morning running in the woods with two of my favorite running buddies, to seeing a dear friend in the obnoxiously long ice cream line (and treating myself to a rare mid-day ice cream), to noticing that it is 4:00 and I haven't had to change a poop yet today. I remain grateful for our health and happiness and graciously look forward to the evening ahead of unwanted showers and complaints about not being able to sleep because it's too hot.

Happy Mother's Day to all and to my friends who are daughters without mothers and mothers without daughters, I wish you peaceful memories of good times and laughter.

Friday, May 1, 2015

My Necessary New Fitness Goal

I'm trying out CrossFit on Monday. I was encouraged by my husband and friends, and I thought what the heck...May will be my month to do a couple things out of my comfort zone (no, not sharing the second thing just yet). I've already been working on my answer when I get asked (inevitably) by the CrossFit coaches what my fitness goals are, which is easy for me because I simply want to get stronger to help my running. However, after carrying a raging Evan up and down the stairs, I came up with my next goal: to be able to carry a raging Evan for as long as I can...do you think that is a goal they've heard before?

Evan is currently about 50 pounds (as best as I can remember), and tall. It suddenly struck me that unless I get a lot stronger, my days of carrying him will soon be over. I'm pretty good at it, and I dare say that my tolerance for carrying him is better than my husbands - he just molds into my body; I like to think I'm holding on to my left over baby belly so that it acts as a shelf to help hold him. Carrying him gets a little trickier when he is raging, as he will become dead weight while I'm lifting him and will fight being held for a short bit, usually long enough for me to build up a little sweat.

What happens if I don't carry Evan? Good question. Well, we are held hostage to wherever he has chosen to tantrum until he is done. This is o.k. if you have nothing else to do in life, but today I needed to get my middle child to dance, so waiting out the tantrum was not possible (typically, if I anticipate a potential problem I'll get her a ride, but I get SO tired of asking for so many favors and sometimes I want to schlep my kids just like a normal Mom). We also have the problem of Evan's endurance being poor, so he often requires carrying when we are doing any long term activities. He was recently unable to walk the whole way in my sister's neighborhood, which made me start thinking about our upcoming summer hiking adventures, and now I've got to try to find a backpack suitable for carrying a 50 lb kid. Never thought I'd have to go there, but again, what the heck...it's hopefully going to give me great leg muscle definition.

And, to be clear, I actually WANT to carry Evan. He calms down best in my arms, and I'm just not ready to give that up. If I can help his body regulate itself, or get him to the top of a mountain to see a view, then I'm going to do it.

So, bring it on CrossFit...I've got a new goal.