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Behavior – When “Totally About To Lose Your Sh*t” Becomes a State of Being

Published June 6, 2016 by Jen Rosado from MyAlternateUniv

I’m being completely honest when I say that for all the “how to raise a healthy baby books” I read when I was pregnant, I did not read one single book on child behavior, discipline, and parenting. First of all, my parents kept 6 of us in line when we were growing up, so I figured I’d just follow their example. Secondly, I was an elementary school teacher and had read many books on child psychology and classroom management. As a teacher I was strict and structured, but loving and fair, and once my class understood my expectations we were able to do fun things.

Strict, loving, fair, and fun.

If I could control classrooms full of 9 and 10 year olds and get them to learn stuff and actually enjoy it, then parenting ONE kid? Pffft! How hard could it be?

Yup, when it came to the behavior of my future child, I was bursting with the self-assured confidence of one who knows they have set sail on a ship that is absolutely unsinkable.

From my vantage point on the deck of my absolutely unsinkable ship, I could glance askance at the red-faced, “totally about to lose her shit”, grocery store mom with two screaming kids in tow and vow with certitude that that would never be me.

Now I’ve mentioned in previous posts about how Fate delights in serving up a healthy helping of humble pie in response to statements of unabashed overconfidence. I’ve also warned against passing judgment on those who find themselves stuck on a dinosaur-filled island, lest a T-Rex or a few velociraptors be released in your general direction. I’ve also suggested being pragmatic when planning for a zombie apocalypse, because the grasshopper that sings instead of making preparations is destined to be eaten alive.

These are all topics I’ve explored since arriving in my alternate universe. Keep in mind that at the time of self-assuredness described above, my son had yet to be born. So although I had battled anxiety demons my whole life up to that point, I was (comparatively speaking) still but a singing grasshopper in a dino-free, unsinkable universe.

The reality of just how ill-prepared I was for my son’s behavior became apparent when he was around five years old. For now, let’s abandon the zombies and dinosaurs and stick with just the Titanic metaphor, which actually makes sense since an iceberg is quite analogous to the challenging behaviors that accompany my son’s autism.

The “challenging behaviors” to which I’m referring are aggressive behaviors like scratching, hitting, pinching, and biting that some (not all) autistic individuals engage in. If you’ve heard the statement “just the tip of the iceberg”, you know it means that you are seeing only a small part of a much larger whole. So it is with my son’s behavior – it is the tip of the iceberg, the visible part above the surface. The much larger part, the causes or “antecedents”, are below the surface.

My son is non-verbal, and he sometimes uses these behaviors to show his frustration at not being able to communicate basic needs and feelings. Because of his sensory issues, he might act out aggressively as a means of defense from over-stimulation in an overwhelming environment. He might also lash out to escape or avoid a task that is confusing, difficult, frustrating, or simply something he doesn’t want to do. It could be a combination of all of these things…or none of them. Sometimes with his “icebergs” we can only guess at the causes that lie beneath the surface.

If this was the maiden voyage of an average ship in average seas, I would be hanging out on the poop deck, having a drink with “angry, red-faced grocery store mom”, commiserating about how much our kids are driving us nuts.

But my story has icebergs. My ship of confidence is going down, and we’re sending up flares and distress signals, hoping help will arrive in the form of a behavior therapist or autism expert, someone to lead us to calmer waters.

Let me tell you – to fall from such lofty heights and plunge into the icy waters of reality below has been shocking and painful, the most chilling part being the guilt that accompanies the recognition that I am far from being the perfect parent my son deserves.

I, more than anyone else in my son’s life, should be patient and understanding about his behaviors. But the truth is when he is pinching and punching and biting and scratching me…I’m angry. And those red-faced, “totally about to lose my shit” moments I swore I’d never have? Some days that is my entire state of being.

And therein lies my glacial guilt, that icy realization that I’m not kind enough, not patient enough, not understanding enough…that despite the fact that I love my son more than anything else in this world, I’m still failing miserably as a parent.

I’m inclined to believe that sometimes when Fate sets you adrift in frigid waters, the Universe aligns to throw you a life preserver.   Because in one of my lowest, most guilt-ridden moments, I happened across this quote from Fred Rogers:

“Love isn’t a state of perfect caring. It is an active noun like struggle. To love someone is to strive to accept that person exactly the way he or she is, right here and now.”

Well, that’s just it, isn’t it? Love is an active noun. It’s not static, exact, or definable.   It has no limits or boundaries to mark its presence or outline its shape. It grows, moves, evolves, transforms. And in love, as in nature, such processes require struggling and striving and enduring.

Even when your love for someone is as deep and wide as all the world’s oceans, it isn’t like you’re floating in the tropical Caribbean Sea every day, basking in the warm, blissful state of “perfect caring”. Yes, even with a love so deep and wide, you may still end up spending some time treading water in the iceberg-filled Arctic. Those days can be a mental, physical, and emotional struggle.

And so we struggle and we strive, my boy and I.

I wake up every day and strive to better understand and accept my boy’s icebergs. My boy wakes up with smiles and hugs – his way of letting me know he’s striving to accept my mistakes and failures, too.

We are doing the very best we can just as we are, right here and now. It’s not perfect, but it is love.

*     *     *

It’s been a challenging day, and I’m rocking my son to sleep like so many countless nights since the day he was born. He is 6 years old now and 50 pounds, his head resting on my shoulder, his body stretching down past my knees. My arms are wrapped around him, my cheek resting on his head.

His chest rises and falls – his breathing, slow and rhythmic, like waves on a beach.

Coming in.

Going out.

I smell the familiar scent of his hair and feel the comforting weight of his body, his heart beating right next to mine.

The waters are calm. Not an iceberg in sight. We gently rock in the warm glow of his musical projector.

We drift and float,

lulled to sleep in this moment of perfect caring.

 

Image courtesy of Pixabay

Image courtesy of Pixabay

Works Cited:

Rogers, Fred. “The World According to Mister Rogers – Important Things to Remember”. New York: MFJ Books/Family Communications, Inc., 2003.

Identity – Missing the Bells and Whistles

Published April 25, 2016 by Jen Rosado from MyAlternateUniv

My husband and I both drive gray Honda Civics – one is fully loaded and the other is a strip-down model. Because I drive our son to school and therapy, my husband has graciously left me the car with all the amenities, taking the car with only the factory basics for his long commute to work every day.

On occasions when my car needs service, I have driven the strip-down car. And although there is stuff I can live without, I realize how much it really sucks when certain things are missing.

My husband’s car has an AM/FM radio, but no CD player…not even a cassette player. There is no “auto-lock”, so each door must be manually locked, with the driver’s side requiring you to hold up the handle while locking it. It is not equipped with AC, and the windows are the old fashioned, hand-crank variety. To add insult to injury, the hand-crank on the driver’s side sticks and requires two hands to wrestle the window open and closed as it screeches and groans loudly in protest.

The car’s interior has seen better days. The ceiling material has detached itself from the insulating foam and would hang so low as to obscure the view through the rear window if my husband hadn’t clipped it back up in several places. Likewise, the glue holding the upholstery fabric to both back doors lost its adhesive power years ago, and now the fabric hangs loosely, attached only in the upper corner where it is trapped under the plastic casing surrounding the door handles.

When I get the car up to speed on the highway, the engine roars and the steering column shudders. I half expect to look in my rearview mirror and see a trail of debris made up of bits of fuselage that has peeled itself off the exterior of the car. On warm days when the windows are down, material on the doors and ceiling balloon and flutter and snap in the wind, frayed and threadbare in some places like the sails of a ghost ship adrift on the high seas.

But for all it lacks and for all its flaws and oddities, it’s a good little car that gets us from point A to point B. Usually that’s all that matters.

Before my son was born, I remember dreaming of what it would be like to be a stay-at-home mom. Even if we could only afford for me to leave my career for a year or two, I was excited to throw myself into the role full-time. I would be the same person with all the same interests and hobbies and dreams – all those things that made me “ME”… and I would ALSO be a fabulously amazing mother.

It’s all about balance, you see. I had read that somewhere.

But my experience as a parent has not been about balance at all. It’s been about sacrifice.

From the moment my son was born, I’ve shed little bits of me. I’ve watched in my rearview mirror as those parts bounce and clatter and roll away behind me, retreating into the distance, memories of a person I once was. And with each new bump in our autism journey I shed more of me.

In my old universe, I was a teacher, a dancer, a runner, a reader. I traveled and climbed mountains and took photographs with a camera that required actual film. By no means was my life a “luxury car”, and I had no desire for a turbo-charged life in the fast lane. Mine was a practical, comfortable life with enough “bells and whistles” to keep things fun and interesting. Music playing and moon-roof open, I felt free to explore the world and discover my place in it – my interests, my passions, my identity.

I’ve spent some time mourning the loss of these pieces of my identity as if they were, indeed, lying by the side of the road somewhere, decomposing and forgotten like so much carelessly discarded litter. I’ll admit, I’ve felt sad and angry and resentful, even bitter about the loss of those pieces. I miss the “bells and whistles”.   I miss my freedom.

Sacrifice is often painted as noble and honorable, a necessary step on the path toward deeper meaning and personal growth. But sacrifice worthy of honor should be a gift given willingly with a full heart, not grudgingly with exaggerated sighs and muttered curses…right?

And so I’ve worried – Am I a selfish, horrible person?

I realize now that I am not a selfish, horrible person, because if I gave up or lost something and didn’t miss it, it wasn’t all that important to me in the first place. Missing it is what makes it a sacrifice. That struggle is where deeper meaning and growth is found, not in some blissful acceptance of things lost.

And when life circumstances force you to sacrifice things that are important to you, when you are stripped down to the factory basic model of yourself, it can make you reconsider the very idea of identity.

It’s true that I am no longer a professional teacher, and I have little time for pleasure reading. It’s true that my dreams of traveling and exploring the world may no longer be possible in my present circumstance. And it’s true that although I’m the same make and model, same year, I’m not in such great shape anymore. My best dancing and running days may be behind me, as some of my parts have taken to creaking and groaning, and now I wheeze and cough when I reach speeds at which I once cruised with ease.

But who I am at the core remains the same when I define myself not with nouns like teacher, dancer, and explorer, but with adjectives like passionate, curious, idealistic, and creative. These traits are the engine that moves me forward, the engine that has ALWAYS moved me forward.

No matter the condition of my exterior. No matter how tattered and threadbare my interior may become from the storms that whip through me. No matter the bits and pieces and parts that fall away. No matter my flaws and oddities, my engine still somehow gets me from Point A to Point B. It gives me the power to reimagine, redefine, reinvent myself.

There are many ways to be a teacher.

There are many ways to be an explorer.

There are many ways to dance.

I need to spend less time looking in the rearview mirror lamenting what is lost and focus instead on the road ahead. My engine is driving me in a different direction now, on a road less traveled – one with twists and bends and mountains to navigate and few road signs to guide the way. The uncertainty is both terrifying and exhilarating.

So now with my music playing and moon-roof open, with a full tank and my engine strong, it’s time to explore my new world and discover my place in it, and maybe, just maybe, “find myself”.

My unexpected detour might make all the difference.

Photo courtesy of Pixabay.

Photo courtesy of Pixabay.

Anger – Why I May Be Destined For An Oscar, Not Sainthood

Published December 5, 2014 by Jen Rosado from MyAlternateUniv

“You are so good with him.” The secretary smiled, her chin resting in her hand as she watched me interact with my autistic son. I have often received compliments like this. Compliments about how patient I am, how I’m such a loving mom, how God chose me to be my son’s mom for a reason.

I responded the way I always do, with a wry smile. “Oh, thank you. But you should see me at 3AM.”

Of course I say this jokingly, but it really is no joke.

Although I am flattered by the compliment, I am no saintly Mother Theresa. That is, unless Mother Theresa had a potty mouth and anger management issues.

The truth is given the right circumstance – like searching for a missing sock or matching Tupperware lid, getting stuck behind a person who is driving too slow, trying to figure out the new operating system on the ipad, etc. – I can construct a string of profanity with more creativity and passion than my late-teens/early-twenties, heavy metal headbangin’, fish net tights with Doc Martin boots wearing self could ever dream. Because as angst-filled as I once was, it’s nothing compared to having control of your life completely hijacked by a preschooler, especially one with special needs.

According to my pre-parenting plans, my child was destined to be a “magic baby” who slept through the night the first week home from the hospital (as long as I put him into his bassinet before he fell asleep and let him “cry it out” so he could learn to “self-soothe”). Then my fantastic parenting would mold him into a “magic toddler” who would eat the food I put in front of him (or go hungry because I wasn’t cooking him his own meal). I was also quite sure that my child would be calm, polite, and well behaved – his preschool teacher’s dream (because I would set boundaries and be firm and consistent in my discipline approach at all times).

My careful, confident planning was based on many assumptions about my future child. I had not considered the possibility that my child would have a neurodevelopmental disorder that would affect his ability to calm his body for sleep. Or that he might have a Sensory Processing Disorder that would give him overwhelming anxiety and make it difficult for him to eat a variety of foods beyond the few he felt safe eating. And my plans didn’t take into account how difficult it is to teach proper behavior to a child with no receptive or expressive language. Indeed, I had never considered the fact there may be a very good reason why a child is not “calm, polite, and well behaved”.

A very, very good reason.

A reason beyond my control that required patient understanding, not strict discipline.

Now I’ll admit, patience has never been my strong suit. Sometimes I surprise myself at how patient I really can be as a parent. But while my love for my son is boundless, there is only a finite amount of patience in my being, an amount that diminishes exponentially based on one variable: Number of Hours of Unbroken Sleep.

Let me tell you a little something about sleep (or lack-thereof). It’s not for nothing that sleep deprivation is considered a form of torture. Sleep deprivation is not only the foremost cause of my lack of patience but also the biggest contributing factor to my possible future Oscar bid in the “Drama” category. Aside from the swearing, foot stomping, and door-slamming, one of my signature Oscar submissions would be my “exasperation moment” where I shake my fist skyward, cursing fate for her cruelty, shouting, “WHY?! Why can’t one goddam thing be EASY?!”

And it really seems that way at times. Whether it’s sleeping issues, feeding issues, asthma, allergies, anxiety, or the inability to communicate, it’s always SOMETHING. Or, as my husband says, “It’s always MANY things.”

In my writing, I try to deflect negativity with humor and hopefulness. But I worry that this may be a little disingenuous, like I’m being dishonest by the sin of omission. Because my anger, in all its ugliness, is very real – it’s the darker side of my experience as a parent.

It’s hard for me to look at this unpleasant aspect of my character. I’m aware of it. I want to change it. I see the way anger makes me selfish, less compassionate, less understanding. Like when I shout, “For the love of God, STOP COUGHING!” to my son in the next room as he wakes me up for the third time that night, for the fourth night in a row with incessant asthmatic coughing. “I gave you both inhalers and your allergy medicine! There’s nothing more I can give you!!”

That’s a pretty stupid thing to say. He has asthma and would very much like to stop coughing. It’s desperation, exhaustion, and selfishness that cause my brain to abandon logic at 3AM – I just want uninterrupted sleep, I want peace and quiet, I want things to be EASY for a little while. At 3AM, I really do feel I have nothing left to give. I’m all tapped out.

And it’s not just the foggy hours before sunrise that push me to the edge. Day to day, I find the pull of gravity to be so much stronger in this universe. Everything weighs heavier on me here. It’s overwhelming and crushing at times. But in this universe, humor provides “lightness”. So does hopefulness. And of course there are always lessons to be learned.

Years of broken sleep left my husband and I feeling like we had been pulled past some Event Horizon of Sleeplessness and were now spiraling into a Black Hole of Madness. So we decided to focus on the root of the problem – our boy’s sleep disorder. We bought a special air cleaner, humidifier, vacuum, and vent filters to help with his asthma and allergies. We got him a weighted blanket and foam mattress pad to help with his sensory issues. A projecting music player gave him something to turn on and watch when he awoke in the middle of the night. And when all else failed, his doctor prescribed medicine that treated his anxiety, impulsivity, and sleep disorder.

You know what? All of these things did not make his sleep issues go away entirely, but they did make the problem more manageable and improved the quality of sleep (and life) for everyone involved.

But what about my anger and guilt? Well, I wish I could say I found some fantastic technique that helped me conquer my frustration and impatience and brought peace and serenity to my life, but that’s not the case. Honestly, the more I’ve read blogs and articles about parenting and the more I’ve talked and commiserated with friends, the more I realized that I’m not alone in my guilt about not being a perfect parent. Special needs or not, parenting in not an easy job for anyone.

So if pretty much every average, typical parent struggles with impatience and frustration, why did I think that my son having special needs would preclude me from having those same feelings?

I realized I had internalized the belief that my son, with all of his special needs and challenges, had been “given to” my husband and me based on some superhuman abilities that made us more equipped for the challenge than the average parent. It was this idea that was shaping my unrealistic parenting expectations.

The reality is I do not possess any superpowers or abilities beyond the average parent. I was not built better, stronger, or faster, like some “6 Million Dollar Bionic Mom”, nor do I possess “Uncanny”, “Amazing”, or “Extraordinary” mutant parenting superpowers like some comic book hero.

I’m just an ordinary mom doing the very best I can to raise an extraordinary child – an uncanny, amazing, and exhausting little boy, who we may find in the future does indeed possess some superpowers of his own.

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