special needs

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Perspective – Stories Told By Trees in a Giant Forest

Published August 22, 2016 by Jen Rosado from MyAlternateUniv

As the saying goes, sometimes it’s hard to see the forest for the trees – you concentrate so hard on the details that you miss the big picture. By the same token, it’s possible to notice the whole while ignoring it’s individual parts – seeing the forest but neglecting to acknowledge the trees.

Then there are those moments when you see both at the same time. It’s all about perspective.

I remember it clearly. I was maybe 7 or 8 years old, sitting on the floor of my bedroom, deeply engrossed in my activity, carefully cutting pieces of cardboard and taping them together to make horses and farmers to go with the cardboard barn I had made.

I could play like this for hours in my quiet, safe cocoon, fully content to be alone with my creativity.

Carefully I drew a face and clothes on the farmer with a black magic marker then folded his legs so that he could ride his cardboard horse. My world consisted of just this activity at that moment – the farmer, the horse, the barn – a little cardboard world of my own creation.

As I began cutting out the next addition to my farm, my concentration was interrupted by music floating through the wall that separated my bedroom from my brothers’ bedroom, and with the music came a mind-altering realization: While I sat playing on the floor of my room, thinking my thoughts, doing my thing, my brothers were in the next room listening to music, thinking their thoughts, and doing whatever it was they were doing.

It was a weird, out-of-body moment, a new awareness that this was not my world with all the people around me playing a specific role in it – “brother”, “Mom”, “Dad”, “teacher”. Indeed, all those people had their own world, their own thoughts and likes and dislikes. Some had been alive and thinking thoughts and doing things before I was even born!

At that moment, my egocentric understanding of life expanded. This realization didn’t diminish my feelings of self-worth – it instead made me more open to understanding others and seeing different points of view.

I have had several of these “shifts in perspective” throughout my life, moments when I understand something on a cognitive level that on its surface seems completely obvious but for a lack of recognition – like suddenly seeing both the forest and the trees.

I remember being in elementary school, my teacher quietly asking if my parents could afford to pay for the field trip to the circus, the different colored ticket I carried to the cafeteria every day for reduced-cost lunch, the food stamps and government surplus food my family qualified for – all this fed into my perception that I must be poor. By the time I was a young adult I had built a mythology on the idea that I had worked hard to overcome humble beginnings to achieve my goals.

In my mid-twenties, I interned in an urban school in a section of the city known for socioeconomic challenges.

A moment of clarity came as I tutored a third grader who was reading at a first grade level. He was struggling more than usual this particular day, and he finally looked up at me and said, “Miss, my dad is in the hospital. He OD’d last night. The ambulance came and everything. I’m really worried about him.”

That was the moment I stopped congratulating myself for pulling myself up by my bootstraps.

Because I hadn’t.

Comparatively speaking, my upbringing had been idyllic, charmed even, with the opportunity to play, and be a kid, and create farms out of cardboard – without the burden of grown-up stresses.

Admitting this fact did not diminish the pride I had in my accomplishments – it instead made me more aware of disparity and how vastly different life experiences can be.

And here again, my son and his diagnosis of autism have pushed me out of my zone of comfort into this alternate universe and an entire community I previously never knew existed, a community familiar with struggle and need.

Autism does not discriminate. The workshops, seminars, and support groups I’ve attended are a mix of people of all races, ethnicities, religions, and social classes. We share. We listen. We empathize. Our commonality is that we are all parents of children with special needs, however each of us brings our own history, our own unique personalities, talents, and challenges.

Beyond statistics and numbers, beyond stereotypes – Each of us is a story.

A few months after our son was diagnosed with autism, my husband was laid off from his job. It was 2011 and “The Great Recession” was in full swing, so our story was not unique. But then again – our story WAS unique. The emotions, the fears, and the complications that enhanced them were very much our own.

After my husband found another job and the intense stress and uncertainty subsided, I became active in social media again, only to be confronted by a barrage of memes and comments aimed at shaming the poor, the unemployed, and anyone receiving assistance from the government, despite it being a time of great need. I pushed back, not just in defense of myself but in defense of all those nameless, faceless people comprising the statistics and stereotypes.

Because the people posting these memes were my friends, they responded apologetically – of course they didn’t mean me. But I understood – they didn’t mean me only because they knew me.

To anyone who didn’t know me I was part of those statistics, recently but also when I was a child.  So, too, was the father suffering from addiction and his son who loved him, the struggling parents in my support groups, and even my son with his special needs – all trees in this giant forest.

It seemed on the surface to be so obvious but for the lack of recognition: To have the complexities of each human life reduced to a number or assigned a stereotype, was to deny each unique history, each individual story.

Understanding this on a more global level does not solve the problems of the world nor deny their existence – but it has given me the perspective to view social issues through compassionate eyes, to dig deeper even when my first reaction is anger or judgment.

I’ll admit, I sometimes find this level of awareness overwhelming. So much suffering and need; so much inequity and injustice. It would be easier to retreat to a place of safety, ignoring the complexities of problems by dismissing them with sweeping statements of condemnation.

In an increasingly cynical age, when compassion is seen as naivety and pithy clichés seem to have lost their pith, it takes a surprising amount of courage to listen to the stories told by trees in a giant forest.

But I will listen, and I will continue to challenge perceptions with those stories in the hope that others might catch a glimpse of the world from another perspective… and maybe even be convinced to stay and share some stories of their own.

 

photo courtesy of Pixabay

photo courtesy of Pixabay

 

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Control – Basic Physics and The Average Bear

Published February 1, 2015 by Jen Rosado from MyAlternateUniv

There are many different bears in this world: Winnie the Pooh is stuffed with fluff yet philosophical and, in my opinion, unfairly labeled as a “bear with very little brain”. And Yogi Bear – thought to be smarter than the average bear based mostly on his ability to steal picnic baskets from park visitors. Of course, there’s Fozzie Bear with an indomitable comic spirit despite constant heckling from the balcony. Also the easygoing, practical bear, Baloo, from The Jungle Book, looking for the bare necessities of life. And don’t forget Smokey the Bear, passionate activist and educator who is always on the look out for danger.

But this is not a blog post about bears – it’s a blog post about physics. More to the point, it’s a blog post about physics and bears and the way fate and the Cosmos conspired to wrest control from my stubborn, desperate, clenching fists, because I sure as hell was not giving it up without a fight.

But first…physics and bears:

Back in my previous universe, I was a fifth grade teacher in an elementary school. Part of our science curriculum was basic physics, including Newton’s first law of motion, also known as “The Law of Inertia”: An object at rest tends to stay at rest, and an object in motion tends to stay in motion, unless acted upon by an outside force.

I wrote this on the white board in the front of the classroom while my students dutifully copied it into their science notebooks.

Any grumblings there may have been when I asked them to copy down their homework at the end of class quickly turned to smiles and even some cheers. Their homework was to bring in a large toy car or remote controlled vehicle and a stuffed bear for the lesson the next day. The toys would be used during science class to conduct an experiment. They would work in pairs or groups, place the stuffed bear atop their vehicle, push the car with a quick motion to start, and end by crashing the car into another car or a wall. Sounds violent, I know, but keep in mind that these are kids, and it’s very likely they had done this many times before in play. The only difference was now I was asking them to make observations about the motion of the bear.

My students laughed and chatted the next day as they pulled cars and bears from their backpacks. They split into groups and found spots in the classroom to drive their stuffed bear around, colliding into walls, radiators, desks, and other cars. The room filled with “Vroom! Vroom!” driving sounds and high-pitched “EEERRRT!” sounds for brakes, followed by loud crashing sounds. (Really, how could you do this activity and NOT add sound effects?) They noticed that when they first started pushing the car, the bear fell backward. When the car came to a sudden halt after slamming into something, the bear flew forward. A bear at rest remained at rest even though the car began moving. A bear in motion continued moving forward at the same speed, even though the car had stopped.

But what about the ‘unless acted upon by an outside force’ part of Newton’s Law?

The din subsided into problem-solving discussions when I gave them their final task: Use materials found in the classroom to design a support or safety system to protect their bear from the effects of inertia.

Thinking back now to that classroom and those students really is like stepping back into a whole different universe…one in which I was a bear completely in control of her car.

Sitting on the roof? No way! I was behind the wheel of my vehicle, swerving to avoid chair legs, bookcases, radiators, and the other insane stuffed bears that were riding on top of their cars. I could see that wall coming from a mile away and have enough time to not only avoid colliding with it, but also plan out an alternate path to avoid it, a “Plan B”, if you will.

Yes, I felt fully in control of my life back then and not because I had great confidence and bravado. It was actually the opposite. I had a desperate need for control in order to ease my constant anxiety. I felt safe in my world as long as I was the one who was driving.

Somehow I was plucked from the driver’s seat and placed on the roof the moment my child entered this world. My car unexpectedly veered off the planned course onto an alternate path to my Universe “Plan B”, and I am currently a stuffed bear hanging on for dear life to the top of a speeding vehicle that is fully in control of a highly energetic, complex little boy with autism.

There are times on this crazy ride when I feel I’m coming apart at the seams, my stuffing beginning to show. And I’ll admit that my own personality is partly to blame.

Since my son was born I have felt compelled to respond to his every need. I choose the word “compelled” quite purposefully here, because indeed I felt instinctively driven to respond to my son’s cries. It was more than just a sense of maternal responsibility – I actually felt physical symptoms of anxiety when my infant son was crying. Even when others around me offered to help, I just couldn’t give up that control. It was not that I didn’t trust others to comfort him. As strange as this may seem to someone who has not had anxiety, to NOT respond felt almost unbearable.

But this was no ordinary baby. He was a discontented, colicky, “high maintenance” baby, and his needs only became more complicated as he grew older.

What’s more, I felt weird about letting people clean my house and help with chores when they offered. It was my family’s mess, after all. Besides, my Type A personality was convinced they wouldn’t clean it the way I would clean it anyway – stuff would get put away in the wrong places, towels would be folded differently, and I’d probably just end up all out-of-sorts instead of relaxed.

So what does all this have to do with bears and physics and a grand conspiracy of fate and the Cosmos?

Well, if you happened to be the kind of person who feels compelled to do everything yourself and you were to, let’s say, have a child who lacks the ability to communicate and requires help for everything from eating and dressing, to regulating emotions, to occupying what seems like every waking moment, all in addition to your normal tasks like cooking, cleaning, and shopping, it may take hitting a wall before you realize…you can’t do it all.

That wall for me was the Epstein-Barr virus, the cause of mononucleosis (just one of the many delightful illnesses carried home by our little host monkey from his preschool). This illness made me dizzy, short of breath, and more exhausted than I have ever felt in my whole life. I kid you not – I was at times so tired I had difficulty responding to someone talking to me, like it took too much energy to get my thoughts to combine with the air in my lungs and the vibration of my vocal chords to actually speak words. Nope…Sorry…Too tired.

I had to let go of some of my control. I had to accept the help of others. I needed to recognize my limitations and say no to those things I couldn’t handle…just focus on the bare necessities.

The experience made me realize the importance of a support system – the “safety belt” that will keep me from flying into the next wall that appears in my path. It’s a support system for me AND my husband (who is also a bear atop his own speeding, swerving car.) That support came first and foremost from our parents, who babysat, cooked meals, picked up groceries, chopped wood, and mowed the lawn. Next were siblings and family members who repaired our cars, hosted holiday gatherings, and provided emotional support.

But having a child with complex special needs requires our support system to extend beyond family. As our parents have gotten older and our son’s issues have become more complicated, we’ve looked into community resources for respite, requested grants to pay for therapy in the home to teach our son self-help and communication skills, and attended workshops and meetings to connect with other parents, always on the lookout for materials and information to construct a more secure support system.

So now I guess you could say I’m a practical, passionate, philosophical bear learning to rely a little more on my safety belt while the inertia of life speeds me forward. Maybe with time (and a good sense of humor) I can learn to relax…just a little bit…and enjoy the ride.

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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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