Tuesday, January 27, 2015

Going to Extremes

Autism, for us, is often a disorder of extremes. With Evan things are black or white, hot or cold, all or nothing...you get the point. Yesterday was a perfect example.

Here is the conversation I had with Evan on the way home from school:
Evan: So, I see your Grandfather died.
     Here we go again with the death subject...
Me: Yes, that is right, my Grandfather died.
Evan: That's o.k. because he can live in your heart.
     Wait, what?
Evan: Just like Martin Luther King; he lives in people's heart.
Me: Your right, Buddy - my Grandfather does live in my heart.
Evan: Is he in your heart right now?  Martin Luther King lives in my heart right now.

This subject matter was clearly scripted for him at school, but the fact that he can generalize the feeling of those that have passed on living in your heart, to my Grandfather and how he can live in my heart, is really amazing; it is a window into the caring soul that we know is within him.

Fast forward a few hours. Evan was trying to get a cup from a cupboard and hurt himself which made him incredibly angry. He's had this reaction a few times, in which he'll get hurt and instead of just crying and trying to fix the pain, he'll get very, irrationally, angry. In this state, you cannot talk to or comfort him, and he'll scream at you if you try.

Black or white, hot or cold, all or nothing, loving or hating.

It really is the good moments that carry you through the bad. If I didn't feel love in return from Evan (because he doesn't say the words), I'm not quite sure I would be cut out to parent him. Honestly, it's in the bad moments that I often feel the most connected to him. See, I was able to finally scoop him up during his meltdown last night and hug him to me; usually when I do this he'll seek out my skin by either putting his face into my neck or putting his face cheek to cheek with me - it's like he needs my body to calm himself down... my skin, my warmth, my pressure...and we'll stay like that sometimes for a long, long time. Last night was one of those times and he finally fell asleep in my arms.

Black or white, hot or cold, all or nothing, loving or hating, war or peace.

Friday, January 23, 2015

Double Standards

I live a life of double standards. I think my girls will need therapy one day to address this issue. I know it happens, and I realize it is not fair, but we do treat Evan differently and hold him to different standards - currently, it is the only way we know how to survive.

Most of our double standards have to do with food...Evan likes to have "dessert first" and this morning he had chocolate pudding before a bowl of cereal. Can the girls do this? No. I've also shared several times his fondness for marshmallows for breakfast, so you can see the theme here.

There are other examples too, though:
  • The girls shower every other day. Does Evan? No.
  • Evan will often end up on the floor under the table if we are eating at restaurant; is it encouraged? Absolutely - he can lick the floor too, if he wants. Can the girls? No, that is disgusting!
  • Evan has no bed time. Yes, the girls do have a bed time.
  • Evan uses words like hate, stupid, and ugly, that the girls are not allowed to use. 
  • Good grades? Important for the girls, but so far down the list of things that I care about for Evan in school that it doesn't even register.
I'm sure there are many more, but you get the point.

So, where am I going with this? Well, Evan has been, for the most part, buying school lunch since the second week of school in September. The first time he bought, I suggested the salad, but every other time since then he had been only buying the bagel. Ask his friends - they'll tell you that "he only buys the bagel". Now, back to the double standard, I'm not sure I allowed Lily to buy lunch in Kindergarten; I can't remember when she started to buy, but I know that I never allowed her to buy more than 2 times per week. Everyone knows that the cafeteria food is disgusting and bad for you, which is why I joined our Wellness Committee 5 or 6 years ago, so I could start to influence some change. Of course, the wheels of progress are slow, and though some things are better (the salads look delicious!), some things are not. But, the rules don't apply to Evan in the same way that they apply to the girls, so I am fine with a bagel every day for lunch because at least he is eating.

Today, however, when I read his communication sheet after we got home from school, I saw that his lunch time food said PIZZA. Evan, I said, did you buy pizza today? Yes, he said. I asked him how it was, and he said it was stuffed-crust and delicious. If this was the girls, my response would have been, "that is disgusting". But, since it was Evan, my response was, "I AM SO PROUD OF YOU FOR TRYING THE PIZZA!!".

I am so proud of him; his ability to choose pizza shows that he can be flexible within a rigid routine. We are talking about almost 5 months of bagel buying here, folks. The best part is that he told me, "I've been thinking about ordering something different", and - seriously - that just makes my heart swell with pride.

When I think about how I had imagined parenthood, pride over ordering gross stuffed-crust pizza would not have been up there on the list. Well, doesn't life surprise you in the most unsuspecting ways...

Monday, January 19, 2015

New Sleeping Arrangement

Evan has moved out...into his own house he built in the living room. It is equipped with toys, a book, a chair, and a T.V. (his Kindle). And yes, he was so excited to sleep there that he is already asleep (at 7 pm, which is good as he has some sleep to catch up on). I will cover him with an extra blanket, but he isn't sleeping in our room, so he can stay there as long as he wants - I'll even deliver food.

He has had a great past week, and I'm happy to report that I'm officially counting into the double digits the number of times he has pooped on the potty!! He's been super funny these days too, though mostly it's unintentional...literal thinking can be quite humorous. Here is an example from today:
As a backdrop, Evan came home Friday with some good information about MLK (well, o.k., I didn't realize that Kindergarteners were taught that he was shot and died, but what do I know). So, this morning...
Evan: Is it a school day?
Me: No, today is not a school day because we celebrate MLK day today.
Evan: (He gets all excited) When is the celebration?
Me: We celebrate him all day long.
Evan: (He looks all around the room at the ceiling and the walls) It doesn't look like a celebration!

Well, he had a good point, but darn - it was so funny! As for tonight? I'm wishing him sweet dreams in his new digs :)

Thursday, January 8, 2015

The Good, The Bad, and The Ugly

The bad first: Evan had a really, really bad belly ache when I picked him up from school yesterday.

The good: this led to a poop on the potty at school before we could drive home, and another poop on the potty at home.

The ugly: well, do you see the books on the floor in the picture? They were thrown there, one by one, by Evan.

So, I thought another post about pooping on the potty would be SO exciting, since he is now 6 and his last poop on the potty was in September. I can still count on one had the number of times he has pooped in the potty, and it has been almost one year exactly since we put him in underwear full time...that is a lot of poopy underwear.

We have a new private BCBA (behavior therapist) coming into our home, and when we talked about potty training, he was quick to point out that Evan needs to be highly motivated to want to do it, and we don't have any good motivators for him at this point. A day or so after this conversation, Evan asked for an art easel...hello, motivating factor...so his therapist suggested that we offer him a piece of the easel when he would sit to try to poop on the potty, and the whole thing when he actually pooped. That is just what we did, and Evan had been collecting random pieces of his easel for about two days, until he pooped on the potty yesterday.

Well, first I was worried about his belly ache, so I cancelled his afternoon therapy (and by default, Lily's percussion lesson, since the timing of that lesson is scheduled around Evan - welcome to the world of juggling our lives around Evan's autism). Second, I wanted to immediately reward him for pooping on the potty, so I started building. (Evan's belly was fine in a bit, by the way, I just think he really, really had to poop; maybe I was too generous on his last dose of Miralax?)

Once completed, Evan asked for his easel to go up to his room (yes, the room that he doesn't actually sleep in), and up it went. Unfortunately, down went the good joy of pooping and earning the easel, as we quickly ran into the issue of not having enough paint, of using real markers on the dry erase board, of the paper not ripping nicely, etc. This lead to a meltdown, during which Evan kept screaming at me, "why do you have to be so mean to me!!", whilst slamming his books into the wall outside his room.

Yesterday's meltdown was the third afternoon in a row of difficult behavior. Needless to say, by the time Jayme made it home, I was mentally exhausted, and any good feelings I initially had about his pooping had long since been replaced with anxiety about how I was going to keep him pooping in the potty, and how many more days in a row will we go with crazy behavior. Yep, we had it all yesterday...the good, the bad, and the ugly...