Wednesday, July 22, 2015

She Knows.

We haven't talked about it openly yet, but she knows.

Amelia knows that her brother is a little bit different.

I was very much looking forward to summer break with the kids this year. Being six now, they are more mature and communicative and interested in the world around them. Better able to understand things and follow directions. And I was right; this has been the easiest and most entertaining summer break I've had since having children.

It's also been the hardest, emotionally-speaking.

Anderson's quirks and anxieties have been at the forefront this summer. He has developed new interests and worries and it has been sort of trying for both Amelia and me.  Part of me feels guilty about saying that; another part of me says that I'm just human and that I'm just being honest.

One of Anderson's newest fascinations is with roads, specifically with getting from one place to another. I knew he was sort of navigationally gifted from a very young age; before he could really talk in complete sentences, he knew every time we got off of New Circle road onto Nicholasville Road and he would say "No dentist! No dentist!"  When we would pass Harrodsburg Road, he would say "Bye-bye, doctor!"  He has just always kind of known where he is in relation to other things, which is a great skill. I truly believe he will never get lost.  However, now he is curious about street names, and he enjoys traveling on certain roads more than others.  This means that, if I tell them we are going to the store, he is going to ask me a series of questions about the route that we will take (example: "Hey mom! Are we going to get on New Circle Road? Are we taking Harrodsburg Road? Are we going north or south? Will we go downtown? Are we downtown yet?" and on and on....).  Then, as we are on our way, he will continue to ask questions about roadways. I have to be honest; there are only a certain number of roadway questions I can tolerate before starting to feel impatient.  I admit to saying more than once, "I'm not answering any more questions about that.." and refusing to talk about it anymore, despite the barrage of interrogatives coming from the back seat. However, I didn't realize that Amelia was also getting irritated until one day, she just came out with "ANDERSON! STOP ASKING QUESTIONS!"  I was both amused and a little bit alarmed because I just assumed she wasn't really paying attention. The constant and habitual need for him to ask questions wasn't lost on her and she, like myself, wanted a moment of quiet.

This summer, we have also been taking care of my friend's cats while she travels on her honeymoon.  Part of our routine is going to her condo in the mornings and evenings to feed the cats, take care of the litter box, etc.  Anderson, while overcoming his fear of elevators, is still skittish. He seems to have developed a fear that someone is going to get stuck in the elevator doorway, or that the elevator won't open.  Therefore, he HAS to get to the elevator door first, has to "guide" (aka push) Amelia and I onto the elevator to ensure we don't get trapped, and has to ask a specific series of questions as we ride--"Are the doors going to open? What does Diesel Ducy call it when the elevator does this (moves his hands up and down quickly; the answer is 'leveling')"  These are non-negotiables; he HAS to get to the doors first, "guides" us onto the elevator, and asks these questions EVERY. SINGLE. TIME.  It doesn't fail.

In the last week, Amelia has become irritated with the routine.  She likes to run in the parking garage, and Anderson's need to control the situation means that he often grabs at her because he doesn't want her to get ahead of him, lest she arrive at the elevator doors before him.  She has pouted, pulled away from him, and yelled at him, but those things don't matter to Anderson.  Finally, tired of the battle, I made a new rule that we discuss every day as we park.  Amelia is allowed to run, but must stop at the door to the building.  Anderson allowed this, but is still clearly nervous. She enjoyed this for a few days, but I could tell she recognized that Anderson was still nervous.  Yesterday, as we were arriving for cat duty, without any prompting from me, she looked at Anderson and said, "I won't run today. Let's hold hands."  Then, I swear to God, the girl looked at me and smiled. I complimented her kindness profusely, and Anderson thanked her and said, "Thanks, Amelia.  When you run it makes me feel nervous." That moment? That was one I'll never forget.  Amelia recognized her brother's needs, and by showing him that kindness, he was able to better verbalize WHY he felt anxious.  It was beautiful.

She went on to assume my reassurance duties in the elevator, answering his questions about whether the elevator doors will open ("They always open, Anderson") and the leveling.  And as we walked back to the elevator doors, she automatically reached for his hand.

I know that there is going to come a time when she will ask questions about what is unspoken. She'll want to know why Anderson does the things he does, and I just pray that I have the knowledge and ability to answer her in the best possible way.  But she already knows. She knows, and she gets frustrated just like everyone else, but most importantly?  She is learning kindness, acceptance, and how to be empathetic to others' needs.  And for that, I am grateful.

Wednesday, July 1, 2015

Something To Say

Long time, no blog. Yeah, yeah. I know. I'm working on it.

I'll gladly give a little update on everything going on around here, but it has to wait. I have something to say here, and oddly enough, it's about...well...having something to say.

Specifically, it's about autism. And the indisputable fact that it IS truly a spectrum disorder.  Think about what that means for a minute--think about the color wheel. Another "spectrum", if you will.  How many distinct colors are there? Practically an infinite number there, many similar, but with slightly different tints, nuances.  Autism is the same--and more specifically, people on the spectrum are the same.  Just like ALL humans in fact, no two spectrum individuals are the same.  That means that we walk around on this earth, surrounded by people with autism, and sometimes we can spot them clearly because they "fit" the stereotype, and sometimes we can't because the characteristics that put them on the spectrum aren't as noticeable. And yet...just because these people don't stand out--because you can't see anything that you characterize as "autistic behavior" as you pass them on the street--doesn't make them any less autistic or less present on the spectrum.

Anderson is one of those people who doesn't always present as being a kid on the spectrum.  If you were to pass us on the street, chances are you might see a typical mother/child interaction.  He might ask what seems like a typical question, I may answer. He doesn't flap his hands; he makes eye contact. He doesn't run, or vocalize. He doesn't often melt down and he generally follows directions without too many requests. He can appear to be neurotypical.

What you may not see if you pass us on the street is what characterizes the vast majority of our interactions. Repetitive speech. Echolalia. Anderson asking the same questions over, and over, and over. Anderson asking questions that he wants you to answer in a very specific way, and Anderson asking you that same question over and over UNTIL you respond the way he needs. Anderson talking using all of the words that he has heard and knows but not having a clue about their definitions and context, meaning that what he says can be complete and utter jibberish. No, the words aren't "jargon", meaning not made-up words, but if you listen to his sentences, they aren't right! There's often no subject/verb agreement.

Does the fact that he can walk down the street, engage in appropriate conversation, and follow directions for the amount of time it takes to pass you, the average passerby, make him any less autistic? NO. Does that mean that our lives are easier than those of people with "classical autism"? Probably in some ways, yes. I do believe that.  But does that mean that our lives are a piece of cake? Absolutely not. To those people who believe that it is, I invite you to live with us for 24 hours. Check out the accommodations that we make to function. Try interpreting what he's really asking of you when the words come out all wrong. And God forbid he get upset about something. Figuring out what upset him will be, let's just say, a challenge.

I'm not complaining here. I absolutely love him--just as he is--with all of my heart. Many of the things that make him autistic are the things that I love most about him. His quirks are endearing and part of what makes him Anderson.  Yes, it can be difficult, almost impossible on the worst days, and we DO have bad days. But I wouldn't trade it for anything in the world. Anderson's autism has made me a more understanding parent and a better educator. I'm not complaining.

What I AM doing is begging you to please...PLEASE stop saying that you question whether he's on the spectrum. Please stop telling me things like "all boys have a hard time communicating", or "he's just a little quirky", or "well if that makes him autistic then my kid is on the spectrum, too". Just stop. Go and read the DSM-V.  Being diagnosed as autistic isn't easy and they don't throw the label around willy-nilly, despite what some people may believe. The disorder is a spectrum but the criteria are distinct. Trust me on this. Just because Anderson has words--and trust me when I say he has a lot of them and he isn't afraid to use them--doesn't mean he's any less autistic.

It is hurtful to me, as his mother, to hear you tell me that you doubt his diagnosis. It makes me feel that you think I have unfairly had a label placed on him, a label that you obviously feel is negative (which is a separate issue for another time).  It makes me feel that you're minimizing his challenges, that you believe I'm over-exaggerating the struggles that we have both at home and with him at school. It makes me feel like you believe that the entire context of my family's life is wrong.

I know I joke a lot about Anderson. He's a seriously funny kid with an amazing sense of humor.  Our family tends to deal with stressful situations with humor--you either laugh or cry, and we most often choose laughter as our way to deal with unpleasantries.  But just because we laugh doesn't mean that it isn't hard, or that we don't have strong emotions about all that he has to go through, both now and in the future.

Please. Before you tell me that "he doesn't look like he's autistic", or that your "kid must be autistic, too, if Anderson is", please stop and think. If you have questions about what makes Anderson a spectrum kid, by all means, ask! I'm happy to share! But please, don't say it. Just don't.