Friday, April 24, 2015

What I See Now

 Since my son was officially diagnosed with autism, I have been racked with a sense of guilt.  How did we not see?  How did we not know?  We're his parents. We should have been the first to notice something was different about our boy.  Yet, it took us six years for my husband and I to finally say to each other, "Something's not right."  It took us seven to say to a doctor, "Something's not right."  Gone are the early intervention years for our son.  Gone is that crucial window to address what I see now were obvious speech and auditory processing issues, visual perception problems, fine motor delays, gross motor delays, scripting, echolalia, repetitive behaviors, social and emotional delays, and all the other warning signs that glare at me through home videos of my precious curly-haired toddler with chocolate on his chin babbling about toy trains in a language only we could understand.

There have been so many 'what-ifs' and so many 'buts' banging around in my head the last few weeks I've literally been overcome by that hot, sick feeling of guilt. And each night I've closed my eyes, my own script starts to play.

"I'm your mother.  I should have known.  I should have seen.

I should have seen before you were one and could recite every animal sound we asked of you in addition to a handful of their names, but rarely answered to your own being called.

I should have seen when we read the same bedtime story every night for so many years, your daddy can still recite it today.

I should have known at age two when we could NOT leave the store without buying ANOTHER plastic 'horsey.' When you spent hours organizing them and making me read from horse fact cards your great-aunt bought as a gift.

I should have seen when you begged to watch the same Thomas the Tank Engine DVD for weeks and months on end.

I should have known that a three-year-old speaking in a language comprised of only vowels was odd.

I should have seen and taken notice of you rocking your body as you blew out the candle at your third birthday to cope with the noise while we sang.

I should have known the day you bolted in the grocery store and for five heart-stopping minutes, you were gone.

I should have known at four, when your Thomas fascination was still going strong, that you were scripting the lines from the movies while you talked about yourself in the third person, inserting your name into the movie lines as if you were a character too.

I should have seen when Thomas gave way slightly to dinosaurs and we played "classification" on the living room rug and you became so angry when I forgot which category paralophosaurus fell under that you scattered the neat lines of them and refused to play anymore that day.

I should have known when you were five and knew all the days of the week, months of the year, and taught yourself how to tell time so you could keep track of every minute of his day and know exactly what time your daddy would get off work and be home each night.

I should have looked twice at you constantly standing on your head and folding yourself into a ball, hiding under chairs and tables, long after other kids had outgrown that kind of thing.

I should have seen at age six when we finally found a playgroup, but you spent all of your time sitting with the adults chatting or trailing behind the other kids, content to watch their games instead of asking to join."

These are the thoughts I've gagged and choked on for months. They have kept me up at night, gnawing at my mind and pulling at my heart.  That small voice inside whispers, "You should have known. You should've seen." And I fall apart every time.

My beautiful boy. I wish I had known. I wish I had seen.  But, let me tell you what I was looking at instead.

I was looking at your smile. How it shows your dimples and the way your eyes crinkle like your daddy's.

I was looking at your gentle way with animals, bugs, birds, and even spiders.

I was admiring your intelligence. In awe of all you were learning.

I was watching your logical mind put pieces of the world's puzzle together. I was listening to you explain to your sister how plants grew and where the Sahara was. 

I was watching you admire Claude Monet and decide you wanted to be just like him when you grew to be an old man (pipe, beard, and all).

I broke down in ugly tears when the occupational therapist finally mentioned autism. Because by then, I knew. I knew what I saw.  Even after all the books I'd read, documentaries I'd watched, having gone through an autism evaluation with your little sister, I still cried at the cacophony of emotion exploding in my heart. I felt so overwhelmed and relieved and grateful and GUILTY all at the same time.  I cried because I felt I should have known, should have seen. I cried because I didn't want to change you. I cried because I didn't know how to stop the struggles and pain you were going through every time we walked into a store with fluorescent lighting or someone started a diesel truck nearby.  I cried because as smart as you were, you didn't understand why things were SO hard. I cried because you wanted so badly to whistle and tie your shoes, but no matter how long you practiced, you just couldn't seem to learn and you thought it meant you weren't special. I cried inside when I watched you want to interact with a friend, but turned away instead because it was just too much for you.  And I silently berated myself.  Why did I never see?  

Maybe, I was blinded by your beautiful soul.  And over the last year as the struggles came harder and faster for you, I found myself finally seeing past the torchlight of your gorgeous, muddy, giggling little boy self.  Finally comprehending that inner-beauty alone couldn't stem the anxiety, control the frustrations, keep you from lashing out, or manage the challenges you were facing.  I watched, feeling helpless, as your behavior regressed and each day became a struggle, your emotions no longer manageable for you.  I knew now you needed help, and it wasn't help I could give by reading you another book or watching a nature video together.  It hurt as I watched you lose interest in friends, in playing.  I watched you out the window as you sat in the hole you so carefully and painstakingly dug, content to run dirt through your hands for hours.  Then I saw.  I saw it all and then I looked over my shoulder and saw a breadcrumb trail of signs that had been there all along.  The stimming, the echolalia, the scripting, the hopping, the flapping, standing on your toes, unable to grasp a pencil, but able to recite sonnets from memory.  And so much later than you deserved, I finally asked for help.

We're on a different path now.  It will, no doubt, be a rocky one. Probably with its fair share of potholes and steep hills.  But I'll walk every step with you, your hand held tightly so you don't fall behind.  If you get tired, we'll rest together.  If you feel like running, we'll run.  Faster and freer than cheetahs on the plain. If it gets too hard and your legs give out, I'll carry you with your curls tucked under my chin. If it gets dark, I'll find a flashlight so we can watch our feet together. We might have to walk in the rain sometimes.  I'll bring an umbrella, and you can carry it. If we get lost and need a map, we'll make one together, complete with compass rose. I'll be your shelter if it gets windy, until you're strong enough to walk alone.  And when that day comes, I'll walk the path beside yours.

Maybe I should've seen you struggle, long before I have.  But I promise from here on out to look through your eyes.  I will feel with your heart, not mine. I will always try to know. I won't.  Not always.  Because even moms can be blind.  But even when I'm blind, I will love you, just as I always have. I will love you so big and so much that there is no measure on earth for it.  I will pour such an infinite amount of it on you, it would be easier to number the stars or count the molecules in the air.

So, my silly crazy boy, at the end of our road, all the things I didn't know and didn't see...and even the things I see now and know.

They will all pale in comparison to how much I love your beautiful soul.

Wednesday, April 15, 2015

What Special Needs Parents Want You to Know

Special needs parenting is not something I ever imagined before it became my story. Little to no thought on my part was given to parents with exceptional and differently abled children. As an education major in college, I always thought exceptional student education was just not my thing. I didn't have what it took. And back then? I was right. I didn't have what it took. However, fast forward eight years and two special needs kids of my own later, I've found what it takes. Or at least I usually find what it takes. You see, there is no "right stuff" to being a parent of any kid, no matter their abilities or challenges. Having children with special needs has mellowed my thoughts of the right or wrong way to do things. What works for some, doesn't for others. And it's okay. All parents will face judgment of their decisions in some form or another. We'll all get a sideways look or a blatant stare when our child is screaming in the grocery store. As parents, we ask that you don't stare, don't comment rudely, don't roll your eyes or suggest a spanking. *And for God's sake, don't ever touch that child (special needs or not) without permission!*

What we need from you is empathy, compassion, an attempt at understanding that life is hard when you're a kid and doesn't get easier when you grow up.  Special needs children are called special needs because they need more. More support, more understanding, more effort put into accepting them along with their challenges or differences. This also means special needs kids have special needs parents. So, what do we want you to know to help you understand what might help make the toughest job on earth a little easier? It just so happens, I have a list right here...

We hide things from you. (And we're good at it.)
I once spent an entire grocery shopping trip crying silently. It had been a hard week and a harder day. I was mentally and emotionally drained. I had given every ounce of patience and used every strategy in my book to control the behaviors, the meltdowns, the anxiety. And still, I felt it hadn't been enough. My husband must have heard it in my voice because he left work early and met me at the store. He kissed me on the head and took the kids without saying a word. He knew. And as I watched their backs as they headed to the Pokemon card aisle, the tears came. And they flowed for the next two hours as I numbly remembered to get the right brand of cereal and the right flavor toothpaste. No one's heard that story before. And many people wouldn't believe it. We're good at hiding. Because sometimes burying the feelings is all we can do. So next time you see someone inexplicably sniffling over the bologna, if you can't give her a smile, at least stop staring. You don't know what struggle she's got buried under the giant bag of Cocoa Puffs.

We work harder. (At everything.)
I don't mean this one to sound rude or abrasive. I don't mean it to downplay the challenges of others, because I don't know them. All I know are the parents of special kids who work tirelessly and ceaselessly to advocate for their children. They work a regular job and come home only to be on duty of a different kind. They're waking up early, going to bed late, forgetting to eat, forgetting to shower, yet still getting to therapy on time, spending money they don't have to get their kids into the school that fits their needs best. They spent all day serving someone else's needs, haven't done anything for themselves in months, and they know it has to be this way. Even if they don't like it. They have to work harder to make it to play dates, to take a trip to the store, to deal with something that didn't go down as planned. We have to work harder to make our marriages and partnerships strong. Because our kids need more of us and we sometimes forget to save some for each other. We work harder to have friends and remember it's okay to let the little things go. Respect us, please. If our kids don't "look" special needs or "seem that bad", it's because we've worked hard as a family to get where we are. The hardest thing to hear is someone who doesn't see our daily hard work invalidate it before we can explain.

We love when you learn about us. (And teach your kids.)
My son has Asperger's Syndrome. Both my kids have sensory processing disorder. My husband has a cousin who has asked us what life is like for them and how we deal with it as parents. I love her questions. She truly wants to understand their differences. I can't begin to explain how much it would improve my children's (and my own) life if everyone weren't afraid to politely ask, "Sensory seeking behavior? What's that like?" We crave your understanding. We don't want or need pity. We don't need you to do things for us. (Unless you're sending coffee or wine, then by all means -bring it on!) We simply want you to see things from our perspective. And a good start is learning our story. What do our kids' diagnoses mean? How does it shape them and make them who they are. Only through educating yourself can you try to see from their perspective. One thing I absolutely love about sitting in the occupational therapy waiting room is watching my kids intact with kids who are different from themselves. They don't see diagnoses or labels. They see kids. Kids like them, but a little different. And they already, at four and seven, have learned that the differences don't matter. We're all just people and every person is different. As my son said recently, "There's only three types of people. Babies, kids, and adults." The world would be such a beautiful place if everyone else could think the same.

We are happy. (Even if it looks different from your happy.)
We live life to the fullest of our abilities. It may not look like your life or your abilities, but we live it. We are happy. We celebrate moments other parents will forget. I stood in a dollar store and cried tears of joy the first time my daughter said a three word sentence. My heart leapt with excitement when my son asked to leave a function at our local community center because he was able to verbalize his sensory overload! It took seven years for him to recognize that feeling. I was ecstatic and bubbling over as his dad took him to the car to watch Jeff Corwin videos on his tablet instead. We are happy with three hours at a local amusement park, even if we only ride one ride, because it means they knew their limits and were able to transition without a meltdown. We're happy staying home in our pajamas because it means a day without stress and no need to spend the next day in detox and recovery mode. We might be happy that we married such strong, loving people who will never let us down. We might be happy to have friends who get us, family who love us, and children with such dazzling smiles. Our happy is different, but so is our parenting. We're okay with that and you should be too.

The bottom line is, parenting is the toughest job there is, no matter what challenges you or your kids face daily. Respect the journey of others because most likely it won't look like yours. A journey that's different from your own is still valid, still worthy, and still needs to be appreciated. None of us have the right stuff, but we're working on it.

Friday, April 10, 2015

Just Another Day

Yesterday was something for my son that I've heard referred to as "diagnosis day." That phrase always incited a small bll of fear and anxiety in me. It sounded cold and forbidding. Like life as you know it will never be the same after "diagnosis day." For months I've been in a strange place of simultaneous dread and eagerness for an answer. A name to give this entity that has the power to control, mystify, and delight. So yesterday, I sat across from an experienced psychiatrist and at the end of a couple of hours; there it was. The thing that causes my son to have so much anxiety about leaving the house, that causes noises and florescent lights in the grocery store to make him "car sick," the reason he can read with the skill of a child five years older than himself but can't remember how to spell his favorite color, the reason he hops on his toes and flaps his hands when he gets excited, the reason he was stoic when I was in tears because a childhood friend of mine passed away, but was beside himself when I casually mentioned he needed new bed sheets. It's the reason for the disparities in his skill set, his avoidance and ineptitude of social interactions with his peers, his rigidity in not being able to perform a task unless it's on his calendar. It's also why he's so interesting, so verbose, so gifted and intelligent. It means he hasn't had a haircut in over a year because he can't handle the feeling of clippers vibrating or loose hair touching him and he's irrationally terrified the scissors will cut him. He's a scientist, logical and honest to a fault. It blows his mind that not everyone thinks like him and other's mistakes frustrate him to no end. He's currently obsessed with Tolkien, Pokémon, and Abe Lincoln and will discourse about them for hours. He's eccentric and quirky and absolutely beautiful.

 My son has Autism Spectrum Disorder. My son's version of this spectrum disorder is called Asperger's Syndrome. And while it makes him the beautiful, inquisitive, and unique kid that he is, it's not all rainbows and good times. With his Asperger's comes crippling anxiety, obsessive thoughts, compulsive behaviors, vocal and motor tics, possible seizure activity, learning difficulties despite being highly, highly intelligent. It comes with visual perceptual difficulties, auditory processing issues, fine motor skills delay, and a staggering amount of clumsiness. He endures sideways looks and stares from people who don't understand how a kid can look perfectly normal one minute and meltdown from sensory overload the next, effectively reverting to behavior that looks more like a three year old than a gifted first grader. He has vocal tics that he can't control at times. Many people don't seem to understand that he doesn't WANT to clear his throat every forty five seconds; he simply can't stop. He wants to play with the other kids on the playground, but he doesn't know how and it causes him so much stress to think about it, he ends up sitting under the picnic table with a book instead. You will always know where you stand with him because he will give you honest answers, even if you don't like what you hear.

As the psychiatrist gave the diagnosis we knew we'd hear, he said something that resonated with me and my husband. He said, "We use labels for kids like your son to give them answers for their behavior, not excuses for it." My son's diagnosis is an answer. He'll still have to make his bed tomorrow and he will still get grounded from screen time if he hits his sister or speaks rudely to me. He doesn't have an excuse; he has an answer for who he is and how his mind works. I could've hugged the psychiatrist, but my son has taught me to respect the physical boundaries of others, so I said thank you instead.

We left the office and took the kids to the park. I called my mom and told her. She was glad her grandson had an answer that would help him. I messaged my best friend, who happens to be a fellow spectrum mom. I told her the relief I felt. She said simply, "I get it." And I know she does. I asked my son what he thought about the whole thing. He said, "The doctor told me he had lots of other patients with the same things as me, isn't that cool?" I texted my son's occupational therapist (who gently encouraged or search for answers). She texted back, "Welcome to the A-train!"  We are lucky and grateful to be surrounded with support and people who appreciate my son and our lives for what they are:  spectrummy.

My dad said it best, "Today is like any other day for me. I love your children."
 He summed it up well. Our son has an autism spectrum disorder, what some call Asperger's Syndrome. We love him.

And that's it. Diagnosis day. Just another day, but with answers.