Beginning to See

It's funny the things I have begun to notice in our little giant. 

All of the time, multiple times a day, Eli comes up to me, looks me in the eye and says, "Mommy, you 'kay?" Just they way Logan does after I sneeze or stumble.

He does it so often. More often than I can count. I thought that was an argument against autism. 

It warms my heart that Eli will say his prayers - our bedtime prayers. I never thought much of the fact that he rarely says them with Logan and I. I actually can't remember ever hearing him say them with us but sometime in the middle of the day, he will try to make the sign of the cross, and with his little voice and his slightly confused language he will say his prayers. 

I thought that would be an argument against autism.

It isn't.

It's called echolalia and it's a common symptom. 

He doesn't just ask me Mommy, you 'kay? when he sees me sad or tired or because I've sneezed. He asks me all of the time, for no reason at all. Sometimes he is looking me straight in the eye with his big, beautiful grey eyes, and sometimes he is on the other side of the room playing with a train. And he keeps asking until I don't just say "yes" but until I say "I'm okay." 

And two minutes later he may ask me again.

He can say his bedtime prayers but doesn't say them at bedtime. He says them while he is sitting on the couch, or in the car, or in the tub, or playing in the snow.

He will say lines from Thomas movies but won't say "Mommy, I want milk." 

He will say the same word again and again and again, in the exact same tone, until you say the word back to him. 

I never knew that meant anything.

He has become fascinated with the fridge over the last week. He likes to go inside of it. (Don't worry, a fridge lock is on it's way from amazon - yes he is small enough to fit inside of it). Today he pulled out all of the cranberry juice bottles and lined them up on the floor. He just kept counting them, "One, two, three. One, two, three. One, two, three". 

He's never done that before.

He took out the bowl of strawberries and climbed up to his seat with his smaller snack bowl on the table. He moved them all from the big bowl to the little one counting, "One, two, three, four, five, six, seven, eight," and then back to the big bowl, "One, two, three, four, five, six, seven, eight."

Is it that I just didn't notice before? 

I've never seen him do that. 

Yes, yes, I have, I've seen him move things from one to the other. I have. 

I just didn't know. 

Innocence

Eli was extra cuddly today. It could have been because he hasn't slept well the last two nights but I think it is because he senses that something is not right. That something has me saddened and confused and ... I don't even know. When he catches me looking at him sometimes he walks over and just touches my face. He senses ... he can interpret emotions, faces, expressions ... he can respond appropriately. 

He can and he does. 

When the idea of autism first came up, I didn't sit down at my macbook and start googling. I didn't sit down and read all of the worst case scenarios and possibilities. Nothing in that is helpful to me. 

When the diagnosis came, I didn't sit down to google - not even then. I told myself I would wait for the report, so I knew exactly what I needed to look for. Exactly what led to the words. 

I know that "high-functioning" was said at some point. I know that we talked about eventually cognitive tests. I know she said he seems "highly intelligent". I know that in the initial paperwork "aspergers syndrome" was not checked and that "autistic disorder" was. 

I know that she explained that he can be so loving and affectionate to me and playful and cuddly and respond to my emotions and still be on the spectrum. I know that she explained that he can be smart and witty and quick and very much be on the spectrum. 

I know that she explained it all. I know that she showed me, section by section. 

I know the only thing that I have really looked at is the 100-day kit on AutismSpeaks that talks about the diagnosis and the stages of grief. I know that it is normal to question if this is real - if a mistake was made. I know that it is normal to think "no, not my child" but, goodness, he sees that I am sad and puts his hands against my cheeks! He cuddles in my arms and looks at me and holds tight. He asks me, "Mommy, you 'kay?"

But he asks me that all of the time - the same phrase - all of the time. Whether I look sad or not. Same phrase - all of the time. I know she talked about that.

I want to talk to a mother who has a baby that is just like mine. Who in so many ways "doesn't fit" everything that comes to mind when you hear the word. I want to speak to someone who has been here, right here, begging to know which is the answer. 

I want to know if the little things really do add up to this major change. The little voice in the back of my mind is saying they do. The little voice is bringing back the moment in that evaluation when I realized that Eli didn't look at the psychologist until half way into it. That he could act like he absolutely did not hear her when she was talking right into his ear. How he wouldn't pick up the block and pretend it was a phone. How confused he looked when she tried to guide him to. Part of me is remembering today, when he put his little face flat into the snow so that Thomas was just in his face and how he would cover him again and again with the snow,  and then with the towel, and then kleenex, the fruit loops, whatever. Always covering Thomas. He didn't even seem bothered with how cold the ice was against his face. Every time I pulled his little body up, he would lay his face right back down. His cheek was so red. The little voice brings up how he puts so many toys in his mouth now - how he licks things - when he never did that during the stage that he should. The little voice brings up how much I have noticed how he flaps his hands towards his face when he gets excited - something I just didn't see before - I never saw it before that eval. 

But he looks at me and says again and again, "Mommy, you 'kay?" Again and again. He doesn't even know. He has no idea what any of this is - what any of it means. 

Such an innocence. Such a genuine goodness. 

How can any of it be true?

Denial

Three hours past the beginning of the boys' bedtime routine I have my little giant clinging to my legs sleeping on my bed. I gave up two-and-a-half hours into it. I thought we had it. I thought I finally had him good and dreaming when I quietly closed the door and went downstairs to clean the kitchen. 

His piercing scream minutes later let me know I hadn't won the battle. Screaming and shaking he came down the steps and gripped me, trying to climb me while my hands were transferring the left-overs from a warm crockpot to the storage container. Once I had completed that one task with a child wrapped around my legs, together we went upstairs and climbed into bed. He is still off and on again thrashing in his sleep, letting out a scream here or there, not letting me touch him when the nightmares (or whatever they are) come.

I hope he sleeps.

So much of today the voice inside my head was arguing that this isn't right. That that psychologist was wrong about him. When he said, "Good job, Mommy," when I turned on Thomas the Train for the umteenth time I convinced myself that this wasn't reality. Never mind that no one else would know what he said. I know he said it. I know and he's my son, I would know if this was true. A mother would know ... wouldn't she?

When he lined his trains up along the TV stand I justified that he only did that because they just happened to be at the same height  - the stand and him - even if he did have to bend down to get his eyes to the wheels. When he moved them to the wicker chest we use for a coffee table and he knelt down to be at eye-level I told myself he just wanted to kneel. It wasn't because his eyes needed to be at the same level as Thomas the train. It wasn't that at all. When he lined them up on the ground and then laid his cheek flat against the carpet, every part of me tried to ignore that. 

When he turned around in circles until he fell into the column dividing the living room and dining I told myself he is three. Three year olds do that, don't they? Three year olds don't cry and get right back up and spin and spin and spin again ... don't they?

I spent so much of today wondering how I get another opinion, wondering who would tell me that the first person was wrong. The first person who explained it so perfectly. Who broke it down and showed me what I knew I had seen.

But what if I hadn't? Maybe I was wrong.

What if she is wrong? What if we put this label on him - that we can never, never, never take back. What if we "make" him something that he isn't. What if it is just me and how I parent him. What if I am changing my child's world - changing even his adult world - when it really is that I am inadequate. What if I am taking something from him that isn't mine to take.

What if we label him and this person is wrong. What if we are changing his life on an error.

What if by trying to do the very best by my baby I am doing the very worst. 

How do you process? How do you know?

How do you know. 

Our Little Giant

All I wanted to do was get out of the store. I just wanted to leave. But for whatever reason my cashier was the slowest cashier, taking extra care to be sure everything was placed in the bag a certain way, very methodical, very precise. 

Looking back on it now, the behavior seems familiar. 

He wasn't remotely phased that my barely-three-year-old was screaming at the top of his lungs, hitting his brother, thrashing his head back because he had seen a Thomas the Train book and I hadn't given it to him. I honestly don't know if he really noticed but the woman at the other check-out, there was no question she noticed. 

Her eyes pierced me. That look on her face - that look of disgust. She wanted me to know she thought I was the worst mother on the planet in that moment. She didn't look away when my eyes met hers, she just let them dig deeper, shamelessly letting me know how much she thought I was failing. 

In that moment I felt broken, and helpless, and defeated, and angered because why couldn't I stop this? Why couldn't I keep him from acting that way? Why couldn't I calm my own son down?

I was failing.

When Dr T first brought up the need for an evaluation I didn't know how to react. I didn't see it coming. I just ... I hadn't thought about it. I really just hadn't. And even when we went forward, I was convinced that this was just me doing everything wrong as his mom. That I was failing and unable and unsure and not a good mom to my littlest little. I thought we would come out of that evaluation with no diagnosis but a mother who was unable. 

In the moment that doctor put her papers on her lap, when she put her hands together and leaned in towards me, I knew that what she was about to tell me was not what I was certain was going to be said.  I knew in that very moment that my heart was breaking - right then. I knew that our family was changing.

I knew it during the evaluation. I saw things I hadn't noticed before while she was playing with my baby. When she broke it down for me, I knew she was right, I had seen exactly what she had seen and before then I just hadn't.

And for a split second I felt relief. 

For a split second I didn't feel like a horrible mother who couldn't understand her son. For just a moment I didn't feel like I was incapable or unworthy or unable. For just a second I felt like I could breathe again.

It has hurt so much to see the stares, and to have to apologize, and to have to explain why we don't usually bring him to people's houses. It has been so hard to watch a meltdown that makes me feel helpless and inadequate as a mom. 

I have just been so tired.

We have always called Eli "mighty", "strong-willed", "little giant". He is strong and determined. Fearless - sometimes too fearless. 

He brings so much joy. He is happy and fun and funny and loving - except in the times when he isn't. He is always at my side. I am his safety which is the very reason I couldn't see it. I am his comfort. He is mine. 

This begins a new journey. Little by little we will enter into his world and little by little we will bring him into ours. 

Eli is our little giant. Fearless. Able. Determined. How incredible it will be to watch him thrive.