Tuesday, January 20, 2015

The Big "A"

About two weeks ago, my son, Lucas was diagnosed with autism. Of course, I knew he was behind, I'd been tracking his milestones since he was born. He was "late" to grasp objects as an infant, late to sit up, late to crawl.  I quit my job when he was 18 months old partially because he wasn't walking yet and I felt that if I was home with him during the day then my presence as a "good" mother would get him back on track. "He's just cautious," his doctor told me.

Last spring, right after he'd turned 3, he still didn't seem to have the hang of walking, he'd fall a lot, he'd get tired after going short distances, he didn't seem to have any muscle coordination. I'd take him to play groups with other kids his age and he just wasn't "keeping up." I looked up three-year-old milestones on the internet and he hadn't reached any of them. He couldn't run, or hop or pedal or trike or do anything that the CDC said that he should be doing at his age. "All kids develop differently," I told myself, "I'm not exactly graceful."

I became convinced that something was wrong with his legs. Maybe one of his legs was longer than the other? Maybe I'd broken his foot when he was an infant in a particularly terrible diaper changing incident in which he'd gotten his foot stuck in the railing of the diaper changing table. Maybe he had cerebral palsy due to a brain injury at his birth. Or, even worse, I pondered the idea of him having a heart condition. Oh my god, what was wrong with my baby?

I took him to our family practice at the time, a nurse practitioner, and asked her to check out his legs. She said "everything looks fine, but are you concerned about his speech?" My response was pretty much no, my kid spoke just fine, he was only three and his vocabulary was outstanding. I'd been marveling over his verbal abilities since he was about 9 months old. I was not concerned about his speech, let's talk about his legs. Why does he walk so funny? Her response was to send me to have him evaluated at Child Find, an early intervention program that works through the public schools. I thought this was a lazy decision, that she was passing the buck, and I made the decision to never, ever take my family to a nurse practitioner ever again. She wasn't a REAL doctor, she didn't know what she was talking about. I set out to find a pediatrician who would actually listen to me.

Either way, since she sent in the referral Child Find called me a few days later and I set up an appointment, because, well maybe they could see what I was talking about. The Child Find evaluation confirmed what I was seeing in the motor skills department, for whatever reason, my three year old  had the motor skills of an 18 month old. He was the required "two standard deviations" behind that qualified him for the special needs pre-k program. I wasn't too surprised there. I'd already committed the CDC's milestone checklist to memory. I knew what he could and couldn't do. The thing about Child Find is that it's a comprehensive evaluation, and they found another problem. My son had a language delay. Specifically, he was markedly behind in his "language comprehension" skills, much farther behind than even his motor skills. This was in stark contrast to his "language expression" skills, which were off the charts. It was odd, they told me, that the two skill sets didn't match, that he seemingly understood less than he spoke, but with therapy they hoped by the time he'd reached kindergarten that he'd catch up with other kids his age. Honestly, I didn't see it. I mean, yeah, the kid seemed like he was constantly, actively ignoring me, but I figured it was because I was just a lame mother and kids do that to lame mothers. And whatever, free pre-school.

Then my husband was laid off from his job, and we suddenly found ourselves without health insurance so I halted my quest for medical answers. The pre-k program turned out to be amazing, and I thought, "ok, well there you go, just a little behind, nothing to worry about, now we're on the right track."

Then, his pre-k teacher called me, saying that she was seeing a regression in his ability to follow directions, he seemed tired all the time and kept falling, he was having difficulty applying new skills he learned in one activity to another, and also, how was potty training going? I was so embarrassed. I had a three and a half year old that wasn't potty trained yet. I'd been trying and failing to get him on the potty for at least a year and it just wasn't happening. What exactly was the point in being a stay at home mom if I couldn't even get my kid potty trained? Clearly, I wasn't cut out for this, clearly, I wasn't trying hard enough. Still, the falling thing bothered me, because it always had, so I tracked down our newly minted insurance cards from my husband's new job and found the kids a new pediatrician, a REAL doctor. One who went to medical school, and I told myself that we wouldn't leave that office until she gave me a referral to a neurologist because at that seemed as good a starting point as any.

When I started to explain my concerns to the doctor, she interrupted me about 2 sentences in. "Have you ever had him evaluated for autism?" she asked. NO. NO. NO. Not another medical professional who was going to blow me off. NO. I could not believe that she was changing the subject. She wasn't listening to me.  I needed a referral to a neurologist. I needed answers. Why do doctors seem so intent on diagnosing everyone with autism? But, because I'm me, I just stared at her and let giant hot tears of frustration roll down my face. "I'll give you a referral to a neurologist," she finally relented, "but I first want him evaluated for autism. I think he's probably at the high functioning end of the spectrum, but you need to have him evaluated." Fine. I left the office fully intending to skip the autism evaluation all together and just take him to the neurologist, I had my referal. That's all I needed.

What exactly did this doctor think she was seeing? I was truly convinced that she was "taking the easy way out" not referencing her presumably encyclopedic medical knowledge and figuring out the real problem with my son. I'd worked with people with autism before. That's not my kid. The neurologist will know. But the neurologist was also booked solid for the next six months.  So I relented. "Ok, I'll schedule the autism evaluation. But she's wrong, she doesn't know my kid. Autism is NOT my kid."

I started obsessively taking online autism quizzes. I think I took the MChat and AQ quizzes at least 50 times each, the result was always the same, "your child exhibits the signs of autism and you should have him evaluated." OMG HOW STUPID ARE INTERNET QUIZZES, WHY AM I WASTING MY TIME?!

Did my son often not respond to his name? Yeah, but again, I'm lame and uninteresting. Does my son have violent tantrums? Yeah, but I have a pretty bad temper too, he's just learning from me. Does your son have sensitivities to light/noise/textures? Yeah, but honestly, does anybody really like tags in their clothing or the sun shining on them in the car or the sound that the vacuum cleaner makes?

Yeah, but. Yeah, but, Yeah, but. That's how I was answering all those questions. Yeah, but.  I had a million excuses and zero answers.

And it's not like I never considered autism. I'd actually been fearing it for quite some time, when my baby who couldn't even crawl yet had the remarkable ability to stack blocks one on top of another until the stack was taller than he was. When I tried to put all the balls from his various toys into one bin and he went and sorted them into correct piles. He'd spend hours making his "machines" or meticulously lining up his toy cars. His favorite toys were two bungee cables he'd taken from my dad's garage. "Ok," I'd tell myself, "he's a little different but incredibly smart. Isn't that the best way for a human to be anyway?"

Then I started down a YouTube spiral of despair. Since my husband works out of town during the week I'd stay up all night watching YouTube videos of kids with autism (there are so, so many) and I'd end up crying myself to sleep because I'd spent the entire evening watching video after video of children behaving just like my kid. He talked like they did, he walked like they did, his tantrums were just like their meltdowns. But not exactly. Not exactly. Not exactly. That means it can't be autism, because he wasn't EXACTLY like all those other kids.

God. No. It's just the internet. The internet can convince you of anything. No. My son does not have autism. No. Go to bed.

Then I'd start my game of looking at old pictures of him on my phone, telling myself that if I could verify that he was making eye contact in 90% of the pictures then he didn't have autism. When that wasn't working, I'd say "Ok, 80%." 70%, 60%, 50%... and so on ... but really who makes eye contact with the camera anyway? He's a kid, not Kim Kardashian. Then I'd start the whole process over again looking for odd body postures or his fingers near his eyes all while conveniently ignoring the plethora of "tantrum" pictures I'd texted to my husband on particularly bad days when I couldn't figure out why my son was screaming his head off. "Put the damn phone down and engage with your kid already," I'd tell myself, "The reason he seems distant is because his mother is distant." "I need to stop being so cold." "I need to work on my patience." "I need to set a better example."

I started fishing for answers from my friends and family. "You guys don't think he has autism, do you?" And they'd always oblige, "Oh, no, of course not."  Did these people have PhDs in psychology? No. But they'd all probably seen Rainman so and I allowed their opinions to placate me. I also found myself hanging around with two of my oldest friends: carbs and wine. I'd ask my husband if he could tell if I'd gained 15 pounds in my butt. "Oh, no, of course not." (my jeans, however, were not so forgiving.)

The thing is, he's such a good kid. He's kind and loving, he likes to be snuggled tightly and held close. He laughs and plays. He has an imagination, albeit how odd it is. His smile. His dimples. That didn't fit with my idea of autism. He's my son. My joy. My light. My baby. How could he be anything else?

Still, by the time the actual evaluation rolled around, I pretty much knew exactly what the result was going to be. After the 6 hour evaluation process, in which I'd watched my son "fail" test after test,  the Dr. said he'd like to see my husband and me the next week to discuss the results. I knew what was coming. But then again, I thought maybe I was wrong. That I'd missed something. It was like one of those terrible dreams that you have where you forget to go to class for an entire semester but you still show up on finals day hoping to perform some kind of miracle.

So when the doctor told us that my son had high-functioning autism I wasn't surprised. I stoically absorbed the information as if I were being told the groundhog was predicting eight more weeks of winter. I didn't cry, or question the diagnosis. I asked a few necessary questions about the next steps in the process, took a tour of the autism treatment center and went on my way. Ok. That's the answer. My son has autism. It doesn't change anything.

The thing is, sometimes you can see a train coming at you from miles away, but no matter how much you brace for the impact, it still rips you to pieces.

The next day I was struck with the most unimaginable grief. The dam of denial that I'd been sitting under for years had finally burst and I was flooded with reality. My baby. My baby. My baby. The world is not what I thought it was.

My answer left me with infinite questions.

I still don't know what all of this means. I'm still a mess. I don't know what the future holds, but really, does any mother? I know that I'm not going to let it define him as a person, that I will do whatever it takes for him to grow into the amazing adult I know he will be. That no matter what, he's always going to be my Luko. That giving a name to this thing that was previously undefined does nothing but open up doors to the help he needs. I'm not labeling him "autistic," I'm avoiding labels like "bratty" or "lazy" or "stupid." I know that 20 years ago he probably wouldn't have been diagnosed with anything, but I also know that there are  20-year-olds out there whose futures would've been infinitely brighter had they received the help and understanding that my son will obtain through this process.

While I do believe I've sliced through my denial and carved out acceptance, the wound is still fresh. It still hurts. So we're just going to take it day by day, because really, we didn't just suddenly find ourselves on the spectrum, we've been here for quite a while.

NOTE: I have the utmost respect for the medical professionals who've helped us through this journey and I am ashamed of being so cross with them, I was just lashing out at them because I was scared and confused. 


Anonymous said...

Brilliantly written. Sometimes, the worst and best of a diagnosis, is the diagnosis. The good news, Luko has a loving family, a loving mother, and a fabulous support system.

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