The Importance of Routine

Its 9:30am. Caiden is eating breakfast right now. Scrambled eggs, toast and a banana - his favorite. Winnie the Pooh is on, and he's laughing at all his regular spots. Eeyore bounching down a hill is as hilarious today as it was yesterday, and the day before. The poor donkey's melancholy is something I'm all too familiar with.

Just a half hour ago, I was sobbing in the kitchen over a pan of eggs, and not because I'd realized I had forgotten to add cheese to make it just the way he likes it.

Ten minutes before that, we were at therapy.

Leaving.

Caiden has gone months without a serious meltdown. Even through the holidays and the major schedule changes, he didn't have a single one. Sure, there are plenty of harmless tantrums, but its been a while since he had one of his bad ones. The hour long (plus) ones with blood curdling screams, gagging, hitting... the whole nine yards.

He had one this morning. At therapy. After being there barely five minutes. His regular physical therapist wasn't going to be there today, so we were asked to come in a little early so that the other PT could see him and avoid a scheduling conflict. Sure, no big deal.

But I messed up. I was under the impression that he would still be having speech and OT first, and then see the other PT. They turned it around. PT was scheduled first this morning, and with a different person. Big, BIG mistake. He cannot do PT first.

Caiden, understandably, lost it. For twenty minutes.

And then mommy did too.

We've been dealing with these meltdowns for almost a year. They started shortly after he lost his speech. Almost a year, and I still have no idea how to help my son. All I can do is try to make sure he doesn't hurt himself and remind him to breathe, which of course he doesn't understand.

Its horrible. Heart breaking. Especially when surrounded by people who want to and are trying to help, and even they give up and just watch. I would rather deal with HELLP all over again than have to watch him struggle, unable to calm him.

Its days like these that I hate autism. Mostly I hate it for taking away his voice, for instilling a twisted sort of fear in me I never knew before, but today I hate it for taking away the spontaneity in life. He will never get bored of his routine, he will never long for change, he may never find joy in adventure. I often wonder if we'll be able to take him to a park this summer. Will the change in routine be too much for him? Will he be able to adapt to daycare or preschool when he goes?

He was fine as soon as he was buckled in the car, his routine back in order. And so we sit here doing the usual, him eating breakfast like this morning's meltdown didn't happen, and me writing and wondering, and trying to hold myself together.

"Do you want to take him home? We can try again tomorrow."

Tomorrow we'll be back at therapy. His regular PT will be there, and he'll see her after he sees his OT and speech therapist. It'll be just like any other day. He might get mad, but we'll make it through the whole appointment. He'll go down the stairs on his own, and we'll clap for him. He'll use his signs, and we'll encourage him. He and his therapists will forget about this morning.

I'll try too, but I'll remember it. I'll remember to double check the next time I schedule something. I'll remember when one of our doctors asks how he's been doing. I'll remember when I still won't know how to help him when he has another.

Family History

When I was 15 weeks pregnant, I walked out of my OB's office sobbing. We had just found out that the baby I was carrying, was a boy. I was ashamed to tell anyone about my reaction. He was healthy, so what did I have to be upset about, people would say. 

They didn't know shit.

For me, the news that I was having a son and not a tiara wearing princess, wasn't about gender preference, it was about genetics. And fear.

I grew up with an older half sister, and a younger brother. My sister was a few years older than me, and had a few physical problems, but nothing that made life too difficult. I remember her having to wear a back brace to bed at night for a while, but to me, she was no different than anyone else. I looked up to her, and until my mid-teens, aspired to be just like her. She was normal; popular among her group of friends, smart, and beautiful.

My younger brother, on the other hand, was about as far from normal as a kid could get. He was only 16 months younger than me, so everyone expected us to be great friends. We were anything but.

One of my earliest memories is of my brother's first psychotic break. We had both gone to school that day as usual, but on the bus ride home, he was absent. I thought nothing of it until I got home and found our mom in tears.

She confessed that he had had an episode while at school, and was away to get help because he was sick. My brother was gone for three days. I later learned that he had been placed in a children's psychiatric hospital, beds complete with restraints, after running away from school with a knife, after threatening to kill the principal and her family.

He was barely nine.

For years, I watched my mom struggle to control my brother. His outbursts became full on rages. The "people" in his head apparently grew louder and pushed him to do unspeakable things. Not too long after his first hospitalization, did he attempt to drown me in the neighborhood's public pool. On more than one occasion I watched as he tried to hurt our mom, or attempt to take his own life.

Our house was filled with drawings that didn't make sense; arrows pointing to corners, circles overlapping circles. They stayed taped to the same spots so long, when we finally moved the walls were whiter underneath.

My brother is 20 now, having just celebrated his birthday not too long ago. I haven't seen or spoken to any member of my family now, for almost a year, for unrelated reasons. At my last count, my brother had been committed somewhere around seven times, the last three falling closer together than the rest.

I never knew my brother's official diagnosis. Our mom never cared to share it with us, and I never thought to ask. I knew he scared me (and still scares me), and that was all that mattered at the time. The more I think about what he was like growing up, the more obvious it is what kind of condition he has.

My mother used to tell me that I'd make a great mom. I'd been the rock for our family, helping to raise my brother when her disabilities got in the way. I'd understood and withstood my brother's assaults, and still stood up for him to the bullies. I could handle him. If I ever had a child like him, I'd be prepared. I would know how to fight for him, how to care for him, how to stay strong.

As with many other things, my mom was wrong. Having a child like my brother was my biggest fear.

My own son, is as different from my brother as they are alike. I lived in fear of the unknown until he was born. His early arrival overshadowed every concern I had once had. He grew and as we left the confusing world of prematurity behind, I let my guard down.

Until his regression.

When Caiden lost his words at 18 months and started getting violent, my first thought was autism. My brother's illnesses were the last things on my mind.

Eight months later, we have few answers and dozens more questions. I find myself wondering if there's more going on in his head than we realize. Could his smaller brain size be affecting the delicate balance of his chemical levels? What if his extreme behaviours aren't from autism, but bi-polar disorder, or worse, something akin to my brother?

Over the last week, we've seen a behavioural regression. When we started therapy, his meltdowns all but disappeared. Now they're back with a vengeance and I find my heart aching for normalcy.

I watched my brother punch himself in the head and put holes in walls for years, and barely batted an eyelash as I attempted to restrain him, oftentimes getting injured in the process. With Caiden its different. Each time he falls into a meltdown, it feels like I'm drowning. There is something so fundamentally wrong about watching your child writhe on the floor, screaming to the point of choking, and being completely unable to so much as touch him.

Sure, I know how to fight for him. I know how to pester doctors into giving me the appointments and the tests I want. I don't always know how to handle a toddler who instills a fear I have never known before.

I fear he will hurt me one day. Even at just two years old, he's strong enough to now.

I fear he will follow the same path my poor brother did, and that his youth will be stained by hospitalizations.

I fear he will never get all the help he needs.

I fear we will never know what makes him so different.

I fear one day he'll regress so far that we'll lose him completely.

I don't always know how to stay strong for him. Sometimes his meltdowns include equal amounts of crying from the both of us.

What I do know, is how to love him. I love him like no mother has ever loved her child before. I have lived a hell other parents don't dare imagine. Each day, he breaks my heart, and each day, it is only he who can put it back together.

Sometimes, on the rougher days, you have to dig a little deeper to find your courage, to grasp your shield and face the lion again. I am not special for facing another day, another battle. I do it simply because I must, and to fail to do so, is to fail the one person who needs me the most.

"God is in the rain."

If you do an internet search for this quote (made popular by the movie V for Vendetta starring Natalie Portman and Hugo Weaving) one of the first things to pop up is that it means "challenge perfects the human soul."

I'm a true Aquarius. When it rains, if I can't make it outside to stand in it, I throw open every window, sit by the sill and watch it pour.

Today it is storming. In more ways than one. If challenge perfects the human soul the way a stone is shaped in a river or a canyon erroded by rain, then my soul should be damn close to perfection.

In honor of Memorial Day, here in the US, my husband had the day off from work. I got to sleep in and take a shower at 11am. My husband was going to nap while Caiden did, but Caiden had other plans. Neither one have napped yet today.

On days that hubby is home, I get Caiden out of his room and take him to sit on our bed to say hi to daddy after his nap. For whatever reason, Caiden didn't want to today and he was thrown into a meltdown.

His most severe one to date.

It lasted about 20 minutes, short as far as meltdowns go, but it was severe. Screaming, thrashing, choking for air, biting, and hitting. The whole shebang. I didn't think it would ever end. It was also the first meltdown of this magnitude that my husband had seen.

He's a great father, he and Caiden love each other to pieces and have an amazing bond. However, he struggles to grasp the difference between terrible twos behavior and autistic behavior, and it frustrates him. For this reason, along with being a stay at home mom, I manage the tantrums, and the meltdowns, and pretty much anything that could induce stress. And I'm happy to do so. I don't always know how to help Caiden, but I have more success than anyone else. He needs me to be there in those moments.

I guess my ability to get through stressors unflustered, is why I started graying just before I hit my 20s, when my grandmother didn't until her 60s.

It stopped raining about a half hour ago and while Caiden is still edgy, I feel calm. If only it could rain on each of his bad days, it would be easier to shake the exhaustion that follows them. There's something calming about watching how the raindrops fall.

We're currently watching his favorite Bubble Guppies dvd. Hell, we might watch the whole thing. Twice, if it means him staying calm. This will be our challenge today. And possibly tomorrow, and each day for the rest of our lives.

Caiden is shaping who we are. He is holding our hearts and he has the power to stomp on them, or hold them tight against his own. He will show us our breaking points, push us past them and force us to build new ones. He will be the rain that threatens to drown us, and the life jacket that saves us.

And when my time comes, if after all this, I don't have a perfect soul, I'm demanding a refund.