Friday, April 17, 2015

An Autism Story

     "If you've met one person with autism, you've met one person with autism." ~ Steven Shore

     Today was a fairly typical morning at our house. The boys were up well before I managed to drag my butt out of bed, but maybe because it was rainy and chilly out, they came upstairs to wake me up with snuggles before launching into their list of demands for the day (a playdate, breakfast, and new sneakers - in that order). They were cuddly and sunny, starting the day off happily, which was a nice change from the past week. We only just got back from a whirlwind trip to NC on Saturday, followed immediately on Sunday by Tom's departure to Boston for three days. Sam also had his first bought of state testing this week too, so we've all been a bit out of sorts and merely hanging by a thread. I wish I could say that we handle that sort of thing in stride around here, but well...not so much...
     To be honest, I've been expecting a big blow up. Between the physically and emotionally exhausting drive to Asheville, coming home on Saturday for a quick reunion with Tom before he left Sunday for Boston on a business trip that lasted most of this week, plus three days of stressful state testing for Sam, the fact that there hadn't been a full on, no-holds-barred meltdown was a minor miracle. But the fissures were starting to form. Like most brothers, Sam and John can't help but pick on each other. This morning, Sam started the downward slide by calling John a loser. John got angry, and stressed, and because he has Tourette's, and his medication hadn't kicked in for the morning, he started self-soothing, making the repetitive noises that seem to give him comfort. Without warning, Sam walked up to him, kicked him, and shouted "Shut up!"
     I intervened and separated them, reminding Sam that his was not at all acceptable behavior. 
     But the name calling continued. When John complained to me about it, Sam told me it was all John's fault. John was the one making the weird noises after all. They were annoying. That's why he kicked him. God! John was so stupid. Why wasn't he in trouble?
     "Mo-om!" John complained again, already exhausted from dealing with his brother for half an hour. I'm thinking to myself I'm right there with you kiddo. We both knew that Sam was not going to stop just because I ask him to.
     But still I tried. I told Sam that name-calling was not ok and he needed to go to his room. Maybe if they were separated for a bit, he would focus his energy on something else. But he hit John in the back on the way to his room. I revoke his kindle privileges for the afternoon after that little stunt. He knows better than this. I won't tolerate him lashing out when he's mad.
     He threw himself to the floor of his room, wrapped in his blankets, outraged, screaming and wailing. "This is all your fault, John!" he screeched at John in the other room. He writhed around on the floor until he was wedged underneath his bed. I  stood in the doorway, unmoved. This scene has played out nearly every morning of my life for 8 years, to one degree or another. Today is a normal day, really. Sam has already calmed down enough to talk to.
     "I am going to ask you a question." I said to Sam, whose muffled cries carried out from under the bed. "If you were John, would you have liked it if he had treated you like you treated him this morning?
     "No," was his muffled response. 
     "That is why you lost the kindle this afternoon. How you behaved was not ok and now I know you know it. It is ok to be mad at yourself right now but you can't blame John for acting like a jerk to him. I am going to close the door now so you can pull yourself together."
     I shut his door and walk back to the kitchen to throw some biscuits in the oven and bacon in the microwave. He continued to cry through that and all of breakfast. By the time John and I have eaten, his room is quiet. I go in and it is as if the last thirty minutes never happened. I ask him to brush his teeth and put his shoes on and he complies. By the time the bus comes, he and John are happily planning their afternoon together.
     This is what my life with an autistic child is like.

 ###

Since April is Autism Awareness Month,  I thought I should say something about it. I'm just not sure what it is I want to say on the subject. I read a lot about autism and nothing really hits the notes I'm going for, so instead, I'll just tell you a little about my own experiences.

1) How I knew something wasn't right.

     He cried. All the time. He didn't sleep through the night until he was 18 months old. He was only interested in trains, and couldn't function without a train set. It was beyond an obsession for him. It was a security. In kindergarten, I donated a train set to the classroom because he was so anxious about whether there would be a train at school. He worried about it all summer. Asked me about it every day. Wanted me to call the teacher and ask. Every.Single.Day. He perseverated. Trying the same thing over and over and over again. Saying the same things over and over and over again. Worrying about the same things over and over and over again. He would throw horrible tantrums that lasted hours, even when he was in his room, in his crib alone with no audience. He'd fall asleep. Wake up and tantrum more. He couldn't self soothe. He couldn't be distracted. Story time at the library was perplexing. He wasn't interested in the other kids, or even listening to the story. He refused to participate, and instead ran around the room like a feral animal. I couldn't take him to run errands. He would literally go from calm and placid at home, to climbing the walls, shopping carts, shelves, etc and screaming as soon as we got in the store. Around the time he turned 2, I googled autism symptoms, because he had many of them. But he was talking and made eye contact and had passable social skills for a 2 year old. That didn't fit at all. So I gave up on that line of thinking and figured he was just "difficult".
      Preschool went well. He was very bright a lot of the time, but didn't make connections I expected him to. His use of language was quirky. His auditory processing was slow. He couldn't follow multi-step directions well. I expected Kindergarten to go really well for him, and was shocked when it didn't. His teacher sent him repeatedly for hearing tests. He wasn't following directions well. We took him for a hearing evaluation at the hospital. It was fine. I began to start to worry for real when he couldn't figure out simple sequencing activities--putting three pictures in logical order. He just wasn't understanding something. I told the teacher my concerns. That wasn't a red flag for her. But it was the first one for me.
     By first grade, our pediatrician and first grade teachers were talking possible ADHD. He was so distractable. Very hyperactive in public. His grades were inconsistent. His PE grade was horrible and he got in trouble all the time for not following directions. His reading wasn't coming along. He couldn't find his place on the page. His misread words and didn't realize that what he'd read made no sense. He couldn't tell you what he'd just read either. His language use was still atypical--and the whole "it's just developmental" excuse wasn't cutting it anymore. He was making grammar errors (using all pronouns interchangeably, for example) that John never made anymore. The English scholar/former teacher in me KNEW without a shadow of a doubt that something atypical was going on in his brain. I got pissed at his first grade teachers, who despite a constant stream of emails back and forth, stubbornly insisted that all his language issues that I was quite convinced were real and worrisome, were all figments of my neurotic helicopter mom imagination (if you know me, you'll know I am the furthest thing from neurotic and helicopter-y when it comes to my kids). I don't get well and truly pissed often, but they got a combined dose of You've Fucked With The Wrong Mama Bear--Don't Keep Sending Home Emails Complaining About His Behavior And Then Dismiss My Own Concerns As Silly with a side of Don't You Discount My Master's Degree In English, Bitches, and I went around them and demanded the full gamut of testing from the school district. The tests came back "normal" except for some problems following directions.  Again I heard my favorite excuse. It's developmental. 
     But then his teachers brought up ADHD again. They were sure that was the problem. I kid you not, the speech pathologist told me to just get him his diagnosis, and medicate him over the summer, and he'd be good to go once second grade rolled around. I was so infuriated I almost throttled her on the spot. 
     Yes, he was inattentive. But this wasn't just an attention issue, and ADHD doesn't affect language development. Sam was struggling with language acquisition and development, and that innate understanding of syntax and grammar that everyone speaking their mother tongue just knows. This was listening to language and understanding the words being spoken to you. Hearing "How are you?" and not replying "Sam" because how and who sounded the same. I was his mother. I had exposed him to language. And not just Dr. Seuss, but e. e. cummings and Roald Dahl and Shakespeare. His vocabulary was rich and well developed. And yet he and she were indistinguishable to him? And he was 7 years old? How did this not alarm her when I had alarms and sirens and blinding flashing lights going on in my head?
     So I made an appointment for an ADHD evaluation with a new pediatrician. My old GP had gotten on my very last nerve spouting about ADHD for a year already because Sam came unglued in his sterile office when he was kept waiting with nothing to occupy his boyish energy. I wanted an unbiased opinion from a pediatrician who wasn't already ready to cram him full of Ritalin. I was a little pissed off at the world by this point. My wrath wasn't pretty. I wrote the doctor an 8 page medical history, complete with every single quirky, unusual, or atypical behavior I had observed up to and including in utero. I printed off every single email I had gotten from his teachers, highlighting their observations along with mine. I pulled out his old pre-school evaluations and highlighted all the quirky behaviors they had observed. I got all this together and mailed it to him before our appointment. If he still thought Sam had ADHD after reading it, well then, I was clearly an idiot and shouldn't listen to my gut anymore.
     This doctor agreed with me though. What we'd been dealing with (really what Sam had been dealing with) turned out to be Asperger's or mild Autism (depending on the year of his diagnosis and what the powers that be were currently calling it). And then we had a name for it.

2) Does the diagnosis matter?

Yes. For school purposes, it has been HUGE. Sam does fine in a regular classroom (in fact he passes for neuro-typical and his teachers constantly question his diagnosis, much to my extreme frustration), and despite the fact that he has no IEP or 504 in place, they do accommodate him now in the sense that they are more patient with him, are willing to repeat directions, and go over steps more slowly with him so that they are sure he knows what he's being asked to do. This simple adjustment has been huge for him at school. The school social worker also keeps an eye out for him, and periodically invites him to a friendship group to help him continue to develop good social skills. All of this matters, and I can legally ask for it now because of his diagnosis. His diagnosis is also good to know about in the sense that sometimes he does things that aren't typical, and knowing he isn't intentionally being a brat gives people the patience and understanding necessary when dealing with him.

And no. Sam is Sam. Every child deserves respect and patience. Just because his brain is wired atypically doesn't make him special. He may be neurologically different, but he's got to learn to live in the world just like the rest of us do. If certain things aren't innate to him, he doesn't get a free pass. He has to work harder at it. Just like I do and you do. What's innate to me (writing) is nothing like what's innate to Tom (Calculus). We're all working on something--learning about our limitations and figuring out how to manage them. Do I wake up every day and think about autism? No. I think about Sam. I think about how to help him navigate his world. I have friends with children on the autism spectrum, and every one of us has a different story, different challenges, different joys, different kids. I'm not speaking for them. I'm just speaking for me.

3) This is a motherhood blog. How has autism changed you as a mom?

I had high hopes pre-children of being a really fun mom. I wanted to bake, and craft, and travel with my kids. Their childhood would be a glorious, messy, ramshackle time full of adventures. I would be the antithesis of the helicopter mom, and let my children be, to follow their own paths and interests, and I would delight in whatever lovely people they turned into.

At my core, I'm a really relaxed, easygoing, unflappable, deeply sensitive, shy, passive, day-dreamy person. I don't get stressed easily, and I'm not high maintenance or particular about pretty much anything.

But this doesn't work when you have to resolve a never-ending tantrum, perseveration, freak out in public, or the physical damage an ill-timed outburst might cause to body or property. I have had to mentally toughen up. I can't get emotionally invested in a tantrum. I just have to help him through it. I can't worry about my embarrassment in public. I have to stop the negative behavior. I can't let things go, and make excuses or ignore socially unacceptable behavior. I have to nip it in the bud, aggressively. Longwinded emotional conversations about feelings don't cut it. I bark short, easy orders. No huggy bear lovey crap when the boys misbehave. I am a drill sergeant. It stops now or there are consequences. There is only one warning. I am to be taken seriously. I am strict when I have to be. Unemotional. Inflexible. Unswayable. I am firm. I am hard-nosed, stubborn, and unrelenting. I have to be. Rules are important. Black and white is important. Absolute truths are important.

Do I like this side of myself? No. Is this the mom I wanted to be? Most certainly not. Do I have a choice in the matter? I don't think so.

Whatever I have to do, I will do if it helps my boys live more harmoniously in the world. Sam has a much better understanding of what my expectations of him are now, and I know better what he can and can't handle. We make the adjustments we can. Despite the challenges, we do bake and craft and travel. It's sometimes like pulling teeth. I often have to force them to enter my world, and do the free-form things they're so uncomfortable with, but it's important to me that the boys have varied experiences and be open to trying new things--even when it's hard for them. I want them see a more enjoyable side of me too. It's just hard to find that balance sometimes.

4. Is there anything else I'd want you to know about me and my life with autism?

I'm emotionally exhausted a lot of the time. My life doesn't come naturally to me at all so I feel like I'm swimming against the current most days. But motherhood isn't easy for anybody. I'm not much different than anyone else. 

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