Friday, October 24, 2014

The Yellow Belt Story

     Evan earned his yellow belt tonight after many months of working with the most amazing karate instructor, Mr. Van, who is truly gifted at what he does. Evan enjoys his private sessions, though will no longer go to group classes; I think this is because it is so much more difficult for him to understand what is being asked of him when he is not getting that one on one instruction. Anyway, he finally made it to his first belt test, which he reported to me was "super easy" but he "needed to get a drink".
     Jayme and I decided beforehand that if he passed his belt test, that we would let him choose dinner and/or a treat to celebrate. Evan chose to go to Blue Fin, our favorite Japanese restaurant. Now, we go to this restaurant a lot (too much, actually), and 80% of the time we follow it up by stopping for ice cream on the way home. So, after dinner I asked Evan what he wanted to do next to celebrate, sure that his answer would be "get ice cream", since that is our routine. I was a little taken aback when he didn't answer me right away, and I could tell he was thinking. Here is how our conversation unfolded.

Evan: Get cough drops.
Me: What?! You want to get cough drops?
Evan: Yes.
Me: Cough drops? You want to get cough drops to celebrate?
Evan: Yes.

Evan begins to fake sneeze...

Evan: Boy, I sure am sneezey. I really need cough drops.
Me: Cough drops are for coughing, not sneezing.
Evan: Maybe I need sneeze drops.
Me: Do you want to go to the store with Daddy to get cough drops?
Evan: Yes.

     We split up so that I can stop to get ice cream, and Jayme takes Evan to the drug store, where he fake coughs through whole store until he gets a cough drop. While sucking on a cough drop, Evan begins to tell Jayme about the nurse at school who gave a boy in his class a cough drop. Ah...the pieces fall into place. Sort of. How did this thought take over his brain after dinner and essentially hijack it? Really, this is a very weird way to celebrate. But, o.k., we are used to weird, so we just rolled with it.
     There is an ice cream sitting in the freezer should Evan decide to eat it. I don't expect it to get eaten tonight, though, as Evan just had his second fake cough attack and is now sucking on a cough drop. I'm laughing as I'm writing this because it's so crazy it's funny, and I've said it before: I can't make this stuff up.

Wednesday, October 15, 2014

There Is a Storm Brewing...

     Call it my superpower, but I can frequently spot a tantrum brewing a mile away; yesterday was one of my best calls yet. I picked Evan up from school and he seemed happy. We made it to the car, which he entered without trouble, and I handed him his smoothie. He was still happy and talkative, but then sat on the arm rest of his seat, not in his booster, and asked if we could wait in the parking lot so he could drink his smoothie. I answered yes, but I knew in that moment that I was headed for trouble. I immediately started time calculations to see how long we could sit in the parking lot before I had to get the girls off the bus. 25 minutes later and Evan was still happily sitting in the now empty school parking lot, but we had to is where the trouble began.
     I actually have 3 videos from my 10 minute car ride home, during which he was raging. I've actually decided not to attach them. They all show him screaming like crazy and hitting the seat in front of him and the window with a stick; what they don't show is him dangerously thrashing in his seat, him sticking a plastic knife into his side (I hope this was an attempt to break the knife and not hurt himself, but I was watching him and I honestly couldn't tell), and him throwing the knife at me while I was driving. We are lucky in the sense that Evan mostly only tantrums in the privacy of his own house or car, and though I think seeing one would be quite eye opening for anyone who hasn't experienced this kind of rage, I think it best that we let these episodes remain private. My Mom was witness to one and it left her shaken and in tears.
     Evan's rage continued for 10 more minutes once we returned home. (I did, by the way, have to call my neighbor to get the girls from the bus - thank you dear neighbor!!) I finally put him on the floor for some pressure after he knocked over a drum set, threw the matching chair, and was on the prowl for more things to destroy. He perked up when his behavior therapist arrived at the house, but was difficult for his entire session and remained on edge for the rest of the night, retreating into the couch cushions when I told him to stop licking me. Typically, we try to draw him out during the times when he shuts down (like when he buried himself in the couch), but I knew that bedtime was still several hours away and I needed a mental break (big glass of wine...and, oh...dinner too). I did eventually go to him, where he spent the next 45 minutes attached to me on the couch.
     An afternoon like this leaves me mentally drained and exhausted and barely functional. Added to my sense of being overwhelmed was a lengthy discussion with his cognitive therapist earlier in the day regarding the deficiencies of public education for guys like Evan (don't worry, this for sure will be a blog post in the very near future). These are days that you can't wash away so easily...they stick with you...they consume your thoughts when you run (thank goodness for running though, as it is good processing time for me). When Evan is having a great day, these are the days that are always in the back of my mind, for I know that with the high highs come the low lows.
     It's almost funny - when you look at the picture below, or if you had passed him in my car, I don't think anyone but me (and maybe Jayme) could have predicted the rapid deterioration in our afternoon. There are some people who deal with tantrums like this day after day after day after day...and I don't know how they do it. I think these situations are the ones that connect the special needs parent - you truly cannot understand the difficulties of these situations unless you live them day in and day out.
     Because, of course, I can't leave this without a positive spin, I am again incredibly grateful that I am writing this from the experience of the MIDDLE of the spectrum, that he can scream at me "YOU IDIOT" because that means he is using his words, and that this is NOT our everyday life. And thankfully, because one should only drink so much wine and eat so much ice cream, today was a much better day :)

Monday, October 13, 2014

Back Again

     We spent the weekend at our family farm, and guess where Evan ended up? Yep, just hanging out with Grandma Grace and Grandpa Bill (with many less questions this trip, thankfully). There is no real "autism" story here, though I've known no other children in our family as happy to hang out on a gravestone than Evan - o.k., I've actually never seen any other children in our family do this. He and I sat here for a good 30 minutes, him communing with his great-grandparents, me enjoying the weather and beautiful views. I had the thought, though, that when I am dead and buried, may my great-grandchildren relax as peacefully with me...

Tuesday, October 7, 2014

Conversation of the Day

     A little backdrop for you...Nana Deb is coming over (Jayme's Mom) and I tell Evan this after school. Also, Evan is obsessed with Star Wars and knows that Darth Vader got burned and "joined the force" (died). Yesterday, Evan told his behavior therapist he was going to burn her when she joined the force - this, I'm sure, was a compliment. She nicely told him that it was up to the person who dies if they are burned or buried, and did not call social services (which I appreciate).

     Back to today:

Evan: Nana Deb is old.
Evan: Is your Dad old?
Me: Yes.
Evan: Is your Dad died?
Me: No, my Dad is Grandpa Tom and we are going to visit him on Saturday. (Remember my earlier post about this topic?!)
Evan: I'm going to burn Nana Deb.
Me: Well, you'll have to ask her if she wants to be burned or buried.

     One hour later...

Evan: Nana Deb, what was your Mom and Dad?
Nana Deb: We called them Nana and Eli.
Evan: Did they get burned?
Nana Deb: No, they were buried.
Evan: Do you want to be burned or buried?
Nana Deb: Turns to look at me with the funniest expression on her face; I had not prepped her for this conversation :). I want to be buried.
Evan: Doh!!

Take home message: if Evan says he is going to burn you, then he must think you are pretty awesome, just like Darth Vader. No, not your typical little kid conversation, but - oh - this world is pretty hard to figure out in his brain. And shoot, this was an entertaining conversation :)

Sunday, October 5, 2014

There Is A Boy In There Somewhere

     Oh, it's been quite a quirky autism weekend. It started with a failed birthday party attempt on Saturday that Evan recovered from quickly but left me deflated for the rest of the day. Turns out that Pump It Up is not a comfortable place for Evan; I had predicted that, but thought we would last more than 10 minutes, and it was as long as 10 minutes because I pushed him a bit to try it out - he was crying and banging his head into me within about 1 minute of entering the building. Hats off to the staff member who, upon seeing Evan struggling, asked me if I would like the music turned down; not one place or person has ever asked me that before. Many thanks too, to the Mommy friends who asked if there was anything they could do to help - I appreciate that a million times more than pretending that a meltdown was not actually happening in front of them.
     Today has found Evan easily angered. The picture below is of him secluding himself after one episode. As I write this, he is in the same spot yelling "idiot" because he is mad that I didn't let him stand unassisted on a theraball in the kitchen. I know - I'm the worst kind of mother.
     We had a great example on a nonsensical conversation today too. Evan was asking if we could go to the zoo, and I responded that it was too late in the afternoon. This is what followed:
Evan: After what?
Me: Afternoon.
Evan: After what?
Me: Afternoon.
Evan: You missed a spot, you cut off the top, and you said afternoon!
Me: ????????
Perhaps this could be some crazy line in a Dr. Seuss book, but it wasn't said in a sing-song, rhyming kind of way. I just let this one pass in the knowledge that whatever he was thinking about or trying to process in his brain was unreachable to me at the moment.
     This past week was not without it's successes though, one of which was Evan's third ever poop on the potty (the first one in 3 months)!! For anyone that is keeping track, Evan is 5 years and 10 months old, and - this should be easily understood by everyone - those days that I'm changing 3-4 pair of underwear (like today) leave me weary. And poor. Underwear gets expensive.
     Complacency does not have room in a conversation about autism. Struggles are daily, some worse than others, and I'm obsessively watching and analyzing Evan's behavior. He has recently started tongue clicking...I think I'm the only one that has noticed, but I have to pay attention to it in case it is an emerging autism behavior. His obsessive sniffing continues too, and now he gets mad at Lily in the mornings because he doesn't like the way she smells (I have to chuckle at this one).
     Anyway, I've written long enough and have to leave my little blogging escape. It is time, after all, to get the kids showered and get myself and Evan out of last nights pajamas and into clean ones :)