Tuesday, May 31, 2016

Cup Shield

Evan has a new best friend; sometimes he calls it his brother. It's a cup from the movie theater with a picture of Captain America on it and it's name is Cup Shield. He made it a bed  on the floor of his room, used my foam roller as its pillow, and tucked it in. Yesterday he went to his room to spend "quality time" with it and then set it up with a story.

Unfortunately, Cup Shield read for too long and felt sick, so Evan tucked it in early for bed and turned his fan to blow on both himself and the cup.


And, weird...right?

Evan has always attached himself to inanimate items not normally chosen as objects of affection. The attachment is usually short lived, but it is nice to see this caring side of him since we witness it so rarely.

Things like this always make me a little bit nervous, though, because he's got a big gray area regarding real versus pretend. There are many a time when we think he is pretending, but he isn't, and while I can tell you with 100% certainty that he understands that Cup Shield is, in fact, a cup, I can't guarantee that he fully understands that the cup didn't actually read a book. Sounds crazy, right? As an example, here is something that happened last Friday...
...Evan needed blood work done, and while waiting for  his blood draw, he started asking if he could take his blood so he could clone himself. I thought he was playing, but he became increasingly insistent on needing his blood. I explained that it is against the rules to take a vial of blood that was needed for testing, and - by the way - you can't really clone yourself. "I know how!", he exclaimed, and went on to explain how he would do it. (The idea for cloning comes from his Lego Jurassic Park video game, and for a while he wanted to hunt for mosquitoes that had dinosaur DNA so that he could grow his own dinosaur.) Eventually, Evan was distracted by his tests, but as soon as we entered the hallway after his blood draw, he crumpled into me and began crying for his blood. I had to pick him up and carry him to the car, where he went on to have a 10 minute tantrum, all the while screaming and crying for his blood so he could clone himself and get a brother. Seriously.

In case you are wondering, the way I deal with these situations is by rolling my eyes with great exaggeration when my back is to him, and if Jayme and I are together, you will often find us laughing or shaking our heads in a 'WTF' moment. Really, it's the only way to get through these moments with some sanity still intact. After I've had my moment of rebellion, I validate his feelings; in this case what I said was, "Buddy, I am sorry that you couldn't take your blood to clone yourself and I understand that you are mad". What else is there to say? In these moments, you simply cannot explain to him that he is being irrational and that the cloning technology he wants to use doesn't exist; it exists in his mind, and he does not yet possess the skills to discriminate the nuances of imagined reality versus reality itself. You know how little kids cover their eyes and think that you can't see them? It's called Theory of Mind...the ability to understand that others thoughts and actions (and reality) exist independently of your thoughts and actions. For most, theory of mind is gained independently during early childhood development; for kids with autism, those skills have to be explicitly taught.

So, back to Cup Shield...is this Evan's substitute because he couldn't clone himself? Perhaps. For now we'll just roll with it and shake our head in wonder when he shows that damn cup more caring then he has for anyone in our house. I'm past taking it personally and you know,  the cup has Captain America on it, so it IS pretty cool. For now we are happy in the knowledge that he has the ability to care so lovingly for something and look forward to the day when he can do that with actual people. Or, maybe he will be the scientist that can successfully clone humans from a blood sample and surround himself with, well...himself.

Wednesday, May 18, 2016

Allergy Season

It's allergy season.
Allergies are no joke in our house...poor Evan is MISERABLE. Soon to be made worse because we've decided to have him formally tested so now he can't take any medicine (since you have to be off antihistamines for the accuracy of the skin test). Last year was Evan's first bad allergy season, which ultimately led to a bacterial infection in his eyes, so this year I had all the medicine lined up and ready to go, only none of it is helping.
I've cancelled all his therapy this week because he can't seem to handle anything beyond school, and even that is more of a battle than usual. I'm trying to tell him that his life can't stop because he has allergies, but when I really stop and think about how this must feel for him considering his Sensory Processing Disorder, it just makes me want to wrap him in a cocoon.
Pollen, pollen, go away....I want my regular kid back.

Thursday, May 12, 2016

Blueberry Meat

"Can I have some blueberry meat?"
                                                    - Evan, at 'way too early' this morning.


I knew exactly what he wanted: blueberry shredded wheat.

I am consistently amazed, and enlightened, and saddened by Evan's use of language. Daily, Jayme and I are modeling to him the correct pronunciation or uses of words and phrases...sometimes these stick and sometimes they don't. I cannot imagine what it must be like to go through life constantly misunderstood.

Earlier this week Evan randomly started telling me about a time (I don't know when) there was a problem in the Special Ed room with another student and he overheard the teachers talking about what to do. He said, "I tried to tell them but they said 'zip it, lock it, put it in your pocket' and I took their device so I could help them.". I asked several questions to try to figure out what this meant and at first I thought maybe he took the iPad so he could be busy while the teachers addressed the other child, but his concern just wasn't sitting right with me so I kept probing to get more information.

Finally, I had an 'AHA' moment. Now, let me write what Evan told me again, this time changing one word.

"I tried to tell them but they said 'zip it, lock it, put it in your pocket' and I took their advise so I could help them."

Makes much more sense, right? Sort of explains why he looked at me like I was crazy when I was asking about what games he was playing on the iPad. I think he was sharing this with me because he was frustrated that the teachers wouldn't let him talk, and he took their advise and stayed quiet, but he really wanted to speak to help them.

Here is another thing recently shared by Evan...sometimes he doesn't eat a lot in the morning, and when this happens he always asks me if he ate enough. (How the hell should I know?!) This stems from the fear that he isn't hungry because he is getting sick, which is the exception and not the norm. Well, one day after school he told me, "I told Mrs. XXX (his aide) that sometimes people don't eat a lot, but she didn't understand me, so I said sometimes people don't eat a lot, sometimes people don't eat a lot but she still didn't understand me". The repetition is intentional here; his aide didn't understand him so he repeated it the same way thinking it would help, but, of course, it didn't. I know, because I'm his mother, that he wasn't looking for confirmation from her that, in fact, some people don't eat a lot. Instead, he wanted to know if he was O.K. even though he didn't eat a lot. My heart just breaks when he tells me things like this because I know that he was worried for his health but no one understood that.

This one is a little funnier: one of his therapist's name is Ashley. One morning, he said, "there are two Ashley's and I'm so confused!". Silly me, I thought the confusion was because he has two therapists with A names, plus a babysitter with an A name, so I started to explain who everyone was. "No!", he yelled, "ASHLEY". AHA! "Buddy", I said, " you mean Ashley and ACTUALLY". This word confusion was all about his pronunciation, but boy...explaining what 'actually' means as a social convention is actually hard.

I could go on, and I'm sure I will in the future, but you get my point. I feel like I want to send Evan into the world with an Evan to English translation dictionary, and then attach myself as a translator. This will be his biggest limiting factor to independent socialization, and so for anyone who has wondered if I would ever "fix" his autism if I could - YES - his difficulty with language I would "fix" in a heartbeat...instead we'll mold it slowly with years and years of therapy. There is no spring season with this extracurricular activity, there is only year round (4 years now) of session after session after session. This kid work so hard. And, so herein lies one of my personal mantras: relentless forward progress. The fact that he can sometimes tell me that he doesn't understand, or is being misunderstood, was unfathomable a few years ago. Talk on, Buddy, talk on...