Friday, December 11, 2015

(Un)Happy Birthday

Sometimes autism is so weird. Well, most times it's weird but we've learned to deal with it. There are days, though (like today), where I wish I could turn Evan upside down and shake this craziness out of his head.

Today is his birthday. Yeah!! Right?

Not so much.

Birthdays have always been hard for him, and days like Mother's Day or Father's Day. Some holidays too, but not all. Halloween this year was a bust. I don't even think I can put into words how days like today work for Evan, because honestly I don't have it quite figured out yet. When it's someone else's birthday, there could be some jealousy at play but I think that is a fraction of what bothers him; my guess is that the structure of the day is changed and it feels different to him (and not in a good way).

Evan has not been looking forward to his birthday. If you ask him, he'll tell you it's because Lily was loud on her birthday (two weeks ago) and woke him up and that ruined the day for him. He was unable to move past this, and as I planned for his birthday he told me he didn't want to do anything, go anywhere, see anybody, and so on. Finally, by this past Wednesday he was getting excited for his birthday and decided to have sugar cookies instead of cake and that he would like to go out for dinner. Progress!!

Fast forward to this morning: he was the last one awake and so the rest of the family was waiting at the stairs to say happy birthday as he made his way down from his room. He - silently- looked at us with a grumpy face and kept on walking. I laughed, shrugged my shoulders, and said we'll try again in a few minutes.

A few minutes later, he was happier and ready for presents; the rest of our morning routine went off without a hitch. UNTIL we got in the car to go to the bus, and then he got mad and started complaining about how Lily was noisy and ruined his day. He ended his rant with this: "thanks A LOT Lily!!".

Lily got on the bus, laughing and shrugging her shoulders, and I redirected Evan with thoughts of sugar cookies and drove him to school. I have no idea how his school day went, though he doesn't like attention so I'm guessing the birthday wishes drove him nuts, but he got upset again at pickup and was crying in the car because of unwanted attention by someone who wasn't even giving him attention. Again, I redirected with sugar cookies, listing for him all of the different types of sprinkles I used.

Jayme and I read once, in an account of a 13 year old with autism, that when a memory is retrieved in an autistic brain it is re-lived as if it were happening right that moment; the memory doesn't work correctly. We believe that this is what is happening to Evan. Unfortunately, the memory of Lily 's birthday is attached in his brain to his birthday and when he thinks about it, it literally leaves him in a state of despair. The incident this afternoon was similar in that the sight of a person who caused him stress in the past triggered acute anxiety and feelings that have no current basis in reality.

Craziness, I tell you.

We are off to dinner and maybe a trip to the book store. And, because I'm the one who pushed the birthday boy out of me without drugs, I am treating myself to cookies (o.k., I made some for me too), and wine, maybe a new book...ice cream possibly too - I mean, we drive right by so it would be a pity not to stop...

Wednesday, December 9, 2015

Therapy In His Own Words

Evan typed this about therapy last night:


The drawing underneath the words, I think, are supposed to emphasize the "meanie" part.

Funny, yes, but I've had to listen to him wail the last two afternoons about how he hates therapy, why does he have to do it, when is it going to end, and on, and on...

Today, we had to skip our lunch plans because of this. I'm not sure how much hearing Evan cry about how he hates his life bothers my oldest, but it cuts my middle one to the core, and so as I was trying to manage him I was worried about her. And him. And me, because I hate this part.

So no one thinks that Evan is tortured during therapy, trust me when I tell you that is it not that bad. Though there is some work, like shoe tying and hand washing and conversation skills, there is also a lot of playing...nerf gun wars, board games, silly role playing exercises. Unfortunately, play is hard for him, and 2 1/2 hours of talking and following directions is not how he would choose to spend his night.

I LOVE that people tell us all the time how great he is doing. I love it, but I HATE how hard it is sometimes for us to get there. Evan's struggles? They are mostly reserved for me. I am on the front line of the battles as his primary caregiver and his enemy was brought into his life by me. I walk him calmly into the hands of his therapists and console his tears as best as I can, hoping...hoping this is worth it.

Now, as he enters the last half hour of his session, I hear him happily playing football with his therapist. I'll let that fill the hole left in my heart from earlier, and propel me into tomorrow.