Sunday, May 6, 2012

A most intimate wakeup call


I think I'm ready to talk about this.

A relative texted me the other day mentioning that she was concerned that my 18 month old son Dylan might have a form of Autism or Aspergers.

My heart stopped.

I can't even tell you how I felt when I read her words because I was in total shock and we were on our way to Dylan's biweekly playgroup at the library. The moms chatted with one another throughout toddler time, joking and laughing about things moms laugh about as I sat silently in a daze watching my son. Suddenly I saw him in a different light--a light that might involve a mental impairment--and I hated, hated everything about how I was reacting. Instead of seeing the positives in Dylan, watching him touch his nose and his toes during finger play, watching him play peek-a-boo with the librarian during Shoo Fly Don't Bother Me, seeing him chase after bubbles with the other kids, my mind was focusing on the slightest differences. Well that 19 month old isn't wanting to get up and move around like Dylan is, that two year old is really into the puppets and Dylan just brushed them off just then.


The word hit me like a ton of bricks.

My first instinct after the shock wore off was terror. I was terrified. I couldn't make the two minute drive home from the library without pulling into a gas station parking lot and calling Sean.

When I told him that our relative had mentioned she was concerned, he lost it on me. How dare you call me at work with something so serious like that! How Dare you call me on the phone with this shit? Do you seriously think that there's something wrong? Really? Relax! Up until then I was in such shock that I felt numb to it all. When Sean yelled at me like that--I. Lost. My. Shit. I bawled. I couldn't breathe. Sean never yells. He never loses his cool. He is the perfect man, husband, human. Sean is my rock when I am crumbling. And he reacted in a way that was so foreign to me that I hit the end button. Dylan was in the backseat, I needed to get myself together fast, auto pilot took over. I breathed. I drove home.

Dylan recognized that something really wrong was going on with me and that I was crying so as we pulled into the driveway he started to babble at me and lift his arms up in our what was that sign. Still in auto pilot I calmly said, "I know buddy. I'm sorry. Mama is having a bad day. Are you hungry?" He replied yup! and so I brought him in the house, let the dogs out, and made him macaroni and cheese. Sean called as we were sitting in the kitchen and apologized for the way he had acted. He told me to calm down and we would talk about it later that night. He echoed don't worry.

So I watched Dylan. I texted my best friend who has spent a million hours with Dylan and asked her what she thought. I started shaking and didn't stop for hours.

I wanted to be mad at my relative and I went back and forth with being absolutely infuriated and then thankful that she was being open and honest about her observations. I had a similar experience with an autistic cousin of mine and held my tongue when the signs that he was nonfunctioning became clear to me. I figured that his mother, my aunt, knew that obviously her son wasn't responding to any stimulation and showing such clear signs of autism that it was not my place to talk to her about the subject. But here I was being absolutely blindsided, being told that someone else--who really does love my child and cares for him--is seeing something that I had never seen before.

Dylan isn't talking much. As of two days ago he said a half dozen words religiously, and mumbled and babbled the rest of the time. If you ask him to find something, where is the ____?, he will point to it no problem. If you ask him to say the word he will look away. He also likes noises and textures, loves music and water. He hates large crowds and often wanders off to do his own thing at parties. These are some symptoms of autism. These are also the actions of normal 18 month old boys. Every child develops differently. Dylan was running circles around us at a year old and is above average in his motor skills. He is behind in his verbal.

We took an evaluation at his 18 month old doctor appointment called the M-chat and Dylan did not show any autistic traits. I brought up his lack of speech to the doctor and he replied that he is not worried about it and that he should start putting words together soon.

I watched Dylan some more.

Here's the thing about having someone tell you they think something might be wrong with your child--and I say wrong, but let me make it clear that I think that children with special needs are some of the most incredible and inspiring children in this world and there is nothing wrong about them--you take it personally. Even if that was not the person's intent. This accusation wasn't meant to be hurtful, it was made out of love and concern for Dylan's well-being, but it felt like just that: an accusation. A punch to the stomach.

Those of you who know me well know that I am a worrier. Big time. I have crippling panic attacks; I think that I have throat cancer every time my throat hurts. When Dylan has a cold I sit up half the night listening to him breathe. I've thought about whether or not Dylan was hearing impaired, or blind, or autistic, or epileptic from the moment he was born. I can't even tell you how many times I Google things like "baby ear tugging" to see if someone else's kid had an ear infection and did the same. And yet, through all of the worry, something about being Dylan's mother has always been so natural for me. I still do my constant research and obsessive monitoring of his milestones and in a way force him to be ahead of the curve as much as possible, but there is something about Dylan that relaxes me.

I never worried when it came down to knowing how to mother my child. I always knew in my heart how to be his mother. Four days ago, I found myself looking at my child as if he was a stranger to me. As if I hadn't spent every moment of his life with him. If something was abnormal with his development, how could I not know?

So I grieved. I spent about three days bawling my eyes out. Not because I thought that anything was wrong with Dylan, but because I started to realize that maybe his lack of speech was because of something that I was or wasn't doing. Since we had always just been two peas in a pod, I didn't make him talk to me. I didn't need him to say anything. He has never had to cry for anything because I always knew want he wanted before he became upset that his needs weren't being met. We had our own language.

I stayed up all night for three days, sleeping for about three hours and doing research on all things developmental until Dylan called for me in the morning. I called relatives and sobbed uncontrollably to them, even though I was trying my hardest to act like I had my shit together. I was the very definition of emotional wreck.

But after obsessing about the idea that Dylan might have autism or aspergers or something of the like, I've realized that he is absolutely fine. And trust me, there were moments when I was absolutely convinced that something wasn't right. So we did a million tests with him. We sat behind him and called his name, we played peek-a-boo, we hid from him and waited for him to find us, we watched for eye contact, we noted silly things like how long he fixated on our ceiling fan and whether or not he still likes it when it is shut off. I counted his words, I watched his motor skills, I rolled balls to him and he rolled them back. He passed every single test we gave him with flying colors and yet I still wasn't convinced. I talked about it with my two sisters who are nurses, I emailed my doctor to ask his advice, I wrote to friends who are speech therapists and teachers and moms. I needed to hear everything they had to say. I compared him to all of his little friends who are his age. I scrutinized until I had nothing left in me.

And while I scrutinized, I lost sight of my child. He was no longer that little boy who spoke a trillion words in our own little language, that little shy introvert who loves to be with people one-on-one but hates loud crowds, who loves trucks and water and music. He had morphed into a part of my research. I took three dozen videos of him this week and watched them over and over. I youtubed autistic and non autistic children and compared the signs. Well, Dylan does love trucks like this autistic child, but he doesn't have oral aversion like this one. He loves to dance like this little girl but he never flaps his arms when he's not dancing around like a sillyhead. This week I worked hard to guarantee myself that I was doing what was right for my child and in the process I was losing my child.

So let me tell you where we are in all of this.


We do NOT think that anything is wrong with Dylan. We DO think that we need to focus on his language skills. We need to set higher expectations for him and not just let him get away with talking in Mama-speech.

This weekend Sean and I changed everything about the way we handle language. Instead of asking Dylan "Where is it?" we ask "What is it?" He resisted all day yesterday and refused to talk--mainly because he has been weakened with a terrible cold and fever and has been struggling to stay alert no less work on his speech. We made him say more and please before we gave him anything. He threw tantrums but quickly learned that he wasn't getting his way until he spoke. So he said "ees" for please and "mah" for more. Progress, indeed.


Today, though, a lightbulb turned on in Dylan. He learned more words today than he learned in the last month. He repeated everything we said in his own little language, but he was trying for the first time. He talked and talked and talked and talked. He answered "yes" to questions as always, but he also answered "blue" when asked what color something was, he answered "ook" when asked if he wanted a cookie or some fruit loops for his snack.

If I had any doubt in my mind that he might have some underlying development issues, all of my worries were dispelled today. I wish you could have been with him today as he picked up a centipede in the yard and said "bug?" as he accidentally pulled the poor creature in half. I was so proud of his word that I exclaimed, "Yes! Bug!" and then tried to pretend that I wasn't bothered when its guts started oozing out. A total boy. A dead centipede.

I am thankful for all of you who helped me through this week, and although I might give this relative a noogie for making us struggle through Hell I am also thankful that she brought Dylan's lack of language skills to our attention and was honest enough to risk our relationship for the sake of my child. There isn't a parenting manual out there and you were all there to help when I needed it most. As a dear friend put it so nicely: it takes a village.

And today, for the first time, Dylan called me Mama.