Diagnosis: Autism

Autism Hope necklace from Etsy

1 in 70 boys are diagnosed with Autism. As of yesterday, Jaden is one of them.

To say that I was expecting it was true and not at all true. I thought that he was Autistic yet thought that I could be wrong, and that he was too difficult to diagnose, the lines too vague, and that as two times before we would walk out with no diagnosis and more questions than answers.

Diagnosis: Autism That’s what was written on the paper. The whole session is already fuzzy in my head, being recorded in my severely sleep-deprived state. To say that I expected that he had Autism did not make the words less of a blow. My stomach hurt like I’d physically been punched. I made it downstairs with Matt and Jaden, made it to the parking garage. Matt put Jaden in his carseat while I stood there slowly turning to stone, and cried. Matt came around and held me. “He’s still our little boy, he’s still our Jaden. He’s still our little ball of sunshine.” On the way home he told me he had expected it, but “Expecting it didn’t make it easier to hear.” The feelings are complex. Relief and grief. Relief because I suspected, or had come to know. Obviously something was wrong, something that didn’t fit or was more than the diagnosises that we’d been given. Grief because no matter what, it’s a terrible thing to have a diagnosis for. Because, as we told each other on the way home, suspecting wasn’t knowing and until then we had doubts. “In doubt there was hope,” Matt said. Exactly. Hope that we were wrong, that it was something else, something elusive that would be grown out of. But Autism. A lifelong diagnosis of struggle and confusion. Last night I finally slept. I don’t know how many days or weeks have passed since the last time I slept more than 4 hours in a night. No, not a night, that’s the problem. I could feel myself degrading yet the sleepiness eluded me. Just me wired up and unable to sleep until 7, 8, 9 in the morning. I felt practically useless at the assessment yesterday, my words staggering and me speaking what I knew were unclear, half sentences. But last night I slept.

beautiful apologies

Yesterday as I was looking for Jaden’s old videos on my computer, I came across a cute funny video of a baby that Matt had emailed to me years ago. I showed Jaden and he became a little obsessed with it, and today begged me to play it for him over and over. I left it on repeat because I had things to do upstairs.

Later, I was online typing when I realized my sentence was jumbled together. I looked down to see my spacebar missing. Yes, missing. This isn’t the first time Jaden had pried the keys from my laptop; it looks like the mouth of an old man with broken teeth. I had, however, thought that he’d matured enough not to do it again.

As I launched into the impossibly difficult task of re-applying key to board, I scolded him a little harshly in my frustration. I went on a bit more than I would have typically because I wanted him to understand me, and what he did wrong. It’s so hard to know if he’s “getting” anything I’m saying sometimes.  It so often seems like he doesn’t, that Matt and I still slip and talk about him or in front of him like he can’t understand us, as you would with a baby. Or a child with dismal language comprehension.

Jaden sat in his Daddy’s lap, silently watching me struggle with the space key for about a minute. Then he spoke up in a sweet, clear voice.

“I’m really sorry, Mommy,” he said meekly. “I didn’t mean to break the computer.”

I stopped cold, the anger melting from me. When I repeat or write some of the things that Jaden has said, it’s often like a translation of a foreign language. I know that’s exactly what he said or meant to say, but that’s not always how it comes out of his mouth. This time it was the sweet angelic voice of two full, complete and clear sentences.

Not knowing how to respond in my shock, I landed on about the 5^th thing I actually thought.

“Well, I don’t know how did such a great job of breaking it if you didn’t mean to.”

“I’m really sorry, Mommy,” he repeated contritely. “I didn’t mean to break the computer. I like the computer.”

My mind was still reeling so I did the only decent Mom thing I could do. “I forgive you, baby,’ I said, adding, “But I still can’t leave you alone with the computer again.” Then I hugged him.

Matt sat stoic but later (out of earshot) said “That was a beautiful apology.” I completely agree.

I don’t know what it’s like when other 2-weeks-from-being-a-4-yr-old’s speak. For me three sentences like that are a gift from Heaven that I would gladly trade a broken keyboard for. Not only the sweet clarity but the knowledge that he understood me.

Life with Jaden is like sliding doors in a revolving room. A room which I’m outside of, and he’s inside. Sometimes the door opens and I can see inside his beautiful mind. Then it shuts. I can’t say for sure, hopefully he will be able to answer one day, but I think that’s what it’s like for him also. Sometimes he understands us clearly, but too often it’s like being underwater. Or listening to life inside a closed room. It’s only my hypothesis, but it seems that way. So often he struggles to understand, repeating and questioning to clarify something we tell him, while his brows knit in confusion and frustration.

One thing I know; he is far more intelligent than his scores say. I would tear down those walls with my bloody fingernails if I could.

Red Cars

I thought Jaden said something about “…a pen and cars,” as he passed through the living room excitedly on his way upstairs. Typical busy-mom style I muttered “Uh huh. That’s nice honey.” Maybe he’s going to get some of his cars to play with. I wasn’t sure what a pen had to do with it, but he’s 3.

I glanced up as he rushed back downstairs and on towards the dining room, still beaming “Ah penned a cars, Mommy!”


“You wha--- ? Ohhhh nooo. Stop, wait!”

In a red-paint-covered hand he held a baby wipe. He smiled at me from a red-paint-streaked face. With his free hand he rubbed red paint into red-paint-matted hair, then tried to wipe it on red-paint-splotched pajamas.

“Wh-what happened?” I stuttered.

“I paint the cars, Mommy!” He rushed ahead to the dining room. I put down what I was working on and followed in dread. He was already busy with the wipe, smearing around a big puddle of red paint on the red-paint-puddled table until it threatened to spill onto the floor.

“Oh my God. Stop baby, stop! Mommy will clean that up.” He held up the wipe now red-paint-dripping.

“Look, Mommy! Look!” He said proudly, pointing to two car candles (leftover from last year’s birthday party), now covered thickly in red paint. They were almost indiscernible red bumps on the now red table.

“Oh. My. Goodness. And you painted the kitchen timer too.”

“I painted it, I painted the timer red!”

It was late, I was tired, and that was one big red mess to clean up. To make things worse, he had not used his own special child washable paints. Oh no. He had found Mommy’s paint. The kind that stains.

Yet as I looked at his beaming red face, all I could feel was pride. My little artistic boy! Baby Da Vinci. A year ago I couldn’t get him to touch paint, and now he’s literally throwing his whole self into it. Maybe it doesn’t bode well for my record as a disciplinarian, but I wasn’t about to scold him for something he was so darn happy about. (And for the record he had asked me to paint about 20 minutes prior and I told him no, it was too late, we’d paint tomorrow.) And maybe I’m wrong for it – in which case, um, I don’t care – but I also didn’t want to mar what could be a defining moment for him and turn it into a negative.

After I had dunked and scrubbed him vigorously and spent 15 minutes scrubbing and combing dried red paint flecks out of his hair with a comb, I did bring it up and told him it was wrong because Mommy had said "not tonight." But I’m not sure that either one of us cared at that moment. He had painted the cars red. He was happy.

Grief

Mid September last year was the turning point in my life. That’s when we learned what we had grown to suspect; all was not as it should be. That’s when we learned that my son is special needs. Through the course of a year we’ve been on excruciating waiting lists and had various assessments. Some gave answers and some just brought more questions. September was the beginning, and each assessment just brought on a new level as I was told it was worse than my optimism kept making it.

Jaden is my only child, I’ve had nothing to compare him to except himself. Sure there were some things in the books, or the occasional play dates, or the advanced cousin who you shouldn’t compare your own child to. Everyone develops at their own pace, boys develop language slower, every personality is different. These things I told myself, these things I read, these things our pediatrician assured us of.

A few months before he turned 3, those things stopped bringing me comfort. At play dates he wouldn’t play with the other children and obsessed over one toy or one idea until he completely melted down. Almost everyone else his age was potty trained, but I was a bad mommy because for some reason I couldn’t find the trick that made it work for him.

I remember one particular day playing in the backyard of a friend’s house with about 10 other families. As usual Jaden obsessed over the ride-on car, following the kids around the yard when it was their turn, jumping on the hood and crying. That day as I chatted with another parent who’s child was a year younger than Jaden (and who had just successfully potty trained), said child sat down with us and talked to me. Looked me in the face and spoke in calm and clear sentences that I understood. Whole sentences.

That day I went from code yellow to code orange. Something was wrong. In spite of everyone’s assurances, something was wrong. I wanted Jaden to talk to me like that. I wanted to understand what he was saying when he spoke, and not have the heartbreaking task of trying to decipher complete babble. I wanted to know what was going on behind those insightful looking eyes.

Then someone posted a developmental checklist on our group’s site. Maybe they did it randomly… maybe they were thinking of me. I’ve seen the milestones. But I read it again that day. And I showed my husband. We went from code orange to code red. Something was WRONG.

What exactly that something was it would take a year to understand. In the meantime grief was strung out and added to in small parts like adding beads to a necklace. Since we were so lacking in answers it was a hard thing to confront and get through all at once. Just little bits and weeping jags in the Target parking lot when I was alone.

I know my situation is worse than some and better than others. But all parents of special needs children share this commonality. There is always grief.

I want to clarify mine because often when I read what others have written, it doesn’t work for me. They don’t speak for me. But there it is over and over, until I heard it from a friend’s mouth who was not a SN mom, who was only saying it because she’d heard it somewhere else and thought she was comforting me.

“I’m sure you’re grieving over the loss of your hopes and dreams, and how you thought your life was going to be.”

No. Not exactly. It makes me cringe every time I hear it. Because, to me, it adds an extra layer on what it is that I am grieving for.

When Jaden was born something amazing happened to me. Previously I was a pretty egocentric person (as many are). I cared deeply about others, but my life was mainly about me. It was my story. The moment he was born the world shifted. It was his story now, I was his supporting cast, and that was ok. In fact it was great.

This isn’t about me. Theoretically, as parents we can all walk away at any time. We won’t, but we can. Jaden can’t do that. This is his life, this is who he is, and this is his struggles. I grieve for him. For how much harder he has and may always have to work at what others find easy. For the fact that there are a lot of heartless people in the world, and one day some of them might say things to him that dims the beautiful innocent light in his eyes. That even now when we go out people see a child who misbehaves, not a child who’s overwhelmed and can’t help it.

I grieve because I don’t know what his future is going to be, and I want him to have a good one. From the beginning my hopes were for him to find what it was he loved in life, and to be able to pursue it. Whatever that may be. Only through time and hard work now will we know if that’s possible. In that, one could argue that I grieve for the loss of my dreams. And I believe, or want to believe, that that’s what many parents mean when they say it. But to the outside world those words take on new meanings of pity and burdens.

My son is not a burden to me. For anyone to think that I grieve for the child I planned to have is missing the point of who he is. He is much more than I could have envisioned in my pre-child word. More beautiful, more quirky, more loving, more full of personality. I look at myself and my husband and I’m in awe that Jaden is much more than the sum of us. My husband aptly called him a ball of sunshine wrapped in a little boy. I tell my husband that we didn’t do anything so good in life that made us deserve him. He agrees.

Jaden looks at me with big blue eyes full of trust. He really believes that “Mommy can fix anything.” (He must considering some of the things he brings me to fix.) I can’t fix this for him. That’s why I grieve.