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All posts for the month May, 2014

Clarity – Seeing Autism For The First Time

Published May 23, 2014 by Jen Rosado from MyAlternateUniv

When I was in the second grade, the eye doctor said I needed glasses for far-sightedness. This was quite exciting for a seven year old. My mom helped me pick out pretty frames, and I felt special when my teacher, Mr. Smith, asked me to stand up and show the class my new glasses. Of course, it wasn’t long before the novelty wore off. Lucky for me, my eyes corrected themselves, and I no longer needed them after a few years.

Thinking back on the early days of my son’s diagnosis of autism, I am reminded of the phrase, “Hindsight is always 20/20.” My son is almost five now. There is no question that he has autism. The signs that were there when he was 18 months old were so clear from where I stand now. How could I have missed them?

Part of it was, honestly…I was farsighted. Up close, the world was blurry and confusing. It was so much easier to focus on the far-off future, to dream of the progress he would make once he “outgrew” his developmental delay. Still clinging, was I, to a universe that was no longer my reality.

Another reason I missed the signs? Autism is complicated. Really complicated. In fact, the full name of autism is “autism spectrum disorder”, with the “spectrum” referring to the overarching range of symptoms and the continuum of severity, from mild to severe. So autism isn’t just one thing, it can mean many different things depending on the individual. A common saying in the autism community is: “If you’ve met one person with autism, you’ve met…one person with autism.” My husband and I, our friends and family – we all had images of what autism “looked like” based on people we had met or characters in movies or on TV. To us, our son didn’t “look like” them.

The weird thing was my husband and I not only had a hard time picturing what autistic behavior looked like, we had trouble picturing what typical behavior looked like. Many friends had children who were well beyond their toddler years and others had infants. Unfortunately, those who did have children around the same age as our son lived further away, and infrequent visits made it hard to observe and compare any differences in our son’s development.

But even our pediatrician, who sees toddlers all the time, was unsure that our son showed warning signs of autism. She admitted, however, it would be difficult to determine based on a 15-minute check-up. She also said she’s not an expert in autism.

Wait…so, if my pediatrician isn’t the expert in diagnosing autism, who is?

Remember that thing about autism being “complicated”? We learned pretty early on that finding an “autism expert” is not as straightforward as finding a specialist for other disorders and medical conditions. Let’s just say that years later we have a TEAM of experts for our son.

But let’s not get ahead of ourselves. Our first referral by the pediatrician was for services through “Birth-to-Three”, a state agency that assesses developmental delays in children and provides “early intervention” in the home. Their initial assessment would take place at the end of his 18th month and would determine if he was eligible for Birth-to-Three services. If he qualified, an educator from the early intervention team would work with our son in our home, and that person would refer him to the autism specific team if necessary.

The ball was rolling. We were finally going to get some answers.

Two women, Sandy and Marie, arrived at our house the morning of testing – Sandy would test my boy and Marie would interview me.

In typical fashion, my son was completely uncooperative. Sandy put three blocks on his tray and asked him to stack them. “Do this,” she said, as she demonstrated. My son took one block in his tiny fist and brought it close to his eyes for a better look. When Sandy tried to take it back, he screamed and refused to return it. For the next test, she showed him a small stuffed bear, placed the bear in a cup, and then handed the bear to my son. “Put the bear in the cup,” she said. My son grasped the bear tightly and, with a bear in one hand and a block in the other, fussed to get down from his high chair.

Hmm…Things didn’t appear to be going well. “He likes to hold things,” I explained apologetically, as I tried to wrestle the objects out of his hands.

Sandy continued with her tests while Marie began asking me questions about my son’s medical history and development. Some of the questions were from a checklist called the M-CHAT (Modified Checklist for Autism in Toddlers). I found myself struggling for answers.

“Does you child ever use his index finger to point, to ask for something?” Maybe once or twice. “…to indicate interest in something?” Not that I can remember.

“Can your child play properly with small toys?” Well, he probably COULD, he just doesn’t.

“Have you ever wondered if your child is deaf?” Yes. He never responds to his name. But we know he can hear just fine, because he comes running from the other room when the “Elmo’s World” song comes on the TV.

“If you point to a toy across the room, does your child look at it?” and “Does your child look at things you are looking at?” (I thought about all the times I had tried to draw his attention to something really interesting by pointing or gesturing.) No. No, he definitely doesn’t do either of those things.

Some questions were confusing to me. “Does your child try to attract your attention to his own activity?” What the heck does that mean? “Does your child ever bring objects over to you to show you something?” Do toddlers his age DO that? “Does your child look at your face to check your reaction?” I have no idea.

As the interview continued, a wave of frustration hit me. “I have to pay better attention to his behaviors! I’ll have to look for these things from now on!” I thought.

I know now, this is not a test you needed to study for. If I had seen these behaviors, I would have known. Still, in the weeks that followed, my husband and I watched for pointing and waving, shared interest and eye contact – all those things that Marie had asked me about our son’s behavior.

By chance, we were visiting some friends a few hours away in Boston. Their daughter was 15-months old and also had a speech delay. Yet despite the speech delay and the fact that she was several months younger than our boy, she performed all those behaviors we had been looking for in our son…all within the first ten minutes of our arrival! She was so excited to see us, making eye contact and smiling. She ran to the other room and returned with a backpack, which she handed to me and indicated (without words) that she wanted me to open it. Inside was one of her favorite toys. Pointing to it, her face lit up and she checked my reaction to see if I felt the same way about the toy. Still beaming, she handed it to my husband and watched his face, too. Of course, we both gushed and made a huge deal. Squealing with delight, she ran to find more toys to share.

Eyes wide and mouth agape, I glanced at my husband. He had the same exact look on his face. We smiled. THAT is what we had been searching for.

Finally. Like putting on my glasses and seeing things clearly for the first time, I observed the vivid contrast between my little boy and another child his age. The differences in their behavior were so profound, so undeniable. And the fact that this child also had a speech delay put sharper focus on the behaviors.

It was clear our son had more than a speech delay.

As I mentioned in a previous post, my mother-in-law was actually the first person to make the connection between our son’s development and autism. She had given us several websites months before, but we had avoided looking at them for fear of getting “all upset over nothing.” When we got home from Boston, my husband and I decided it was time to check out the information about autism on these sites. Now that the glasses were on, we were determined to find all the clues we could.

I put my son down in the living room and turned on “Elmo’s World”. He started twirling with excitement. “No spinning, Silly Goose!” I said, placing my hands on his shoulders. Laughing, he began his usual laps, running back and forth from the couch to his little chair, occasionally throwing himself into the cushions.

I sat down with my husband at the computer. He clicked on a video about the early warning signs of autism. We watched and let the truth sink in.

Our son had autism.

I looked up from the screen to see my son spinning in circles, his head tilted toward the ceiling, staring at the ceiling fan out of the corner of his eye, smiling. “No spinning,” I tried to say, but I choked on my words. Overwhelmed, I crossed the room and scooped up my little boy, holding him tightly as the tears came. My husband hugged both of us. For several moments we stayed like this until, protesting loudly, my son wriggled and tried to get away from his crazy parents. This made me laugh and broke the mood.

After all, his world hadn’t changed. Only ours had.

Although the truth can be painful, it can also be incredibly freeing. My vision at that moment was in no way 20/20. Things were still very blurry and confusing. But my focus on the present was clear now. The itinerary I had written for my previous universe no longer applied here, and I needed to come up with a new plan for the journey.

There was a lot of work to do.

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Parents – An Appreciation of “Starving Artists” and Their Masterpieces

Published May 11, 2014 by Jen Rosado from MyAlternateUniv

Imagine, if you will, an artist painting a masterpiece, adding a line here, a dab of color there – the outlines and textures and depth of a portrait emerging over many years. Now imagine, after about fifteen years of tireless, painstaking work, the artist sits back to admire the masterpiece only to be disturbed by the fact that the eyes of their subject appear to be rolling skyward, the upper lip is curled ever-so-slightly in a look of disdain, and the middle finger of one hand appears to be extended. The artist leans forward, squinting in dismay, and cries, “I do believe my greatest work of art is flipping me off! I didn’t paint it that way! Where, oh where, did I go wrong?”

My son is not yet a teenager, but I already dread the age when the little boy that I tickle and snuggle and smooch will grow up and suddenly not want to be seen in the same room with me and will rebel against the life we’ve created. There will likely be some doors slammed. Maybe a loud announcement that I’m “totally ruining his life.”

It’s the typical teenage refrain, “It’s not fair! You guys just don’t get it!” Really, it should be the other way around, with the parents saying, “No, YOU just don’t get it!”

In honor of Mother’s Day and Father’s Day, I just wanted to say to my mom and dad…

I get it now.

When I was a kid, I didn’t think of my mom and dad as real people with real identities other than “Mom” and “Dad”. They were the big people who knew everything and loved and took care of me. Then I become a teenager and realized they weren’t really that big, and they didn’t really know everything. They made mistakes. They were human. In the wisdom and enlightenment of my teens, I decided that I would do everything differently.

It’s true – my path HAS been different from the path my parents chose. My parents married young and had six children over the span of twelve years. Me? I went to college straight out of high school, found a job, and moved out on my own. I eventually went back to school for my Master’s and changed careers before meeting my husband in my thirties.

Now I have a child, much later in life than my parents did, and it has given me a level of understanding of my mother and father that I may never have reached had I not become a parent myself. I understand the love, of course, but more importantly I understand the sacrifice.

Growing up, we were a working class family. My mother gave up her career as a nurse to stay home with us while our father worked at the local factory making jet engines. There was enough money to pay the bills and put food on the table but not much left over for anything else. No trips to Disneyland, or a cabin in the mountains, or a beach house. Our clothes were often hand-me-downs, mismatched in comical ways, judging by family photos (or maybe that WAS the style at the time?). Food was carefully rationed to make it go farther – no second helpings until you had a slice of bread and butter, cereal and milk were measured before pouring into the breakfast bowl, and sandwiches were always ONE slice of cheese and ONE slice of lunchmeat. (I still deconstruct deli sandwiches. Seriously, you can build five sandwiches with the amount of stuff they put in one sandwich.)

Despite the size of our family, we lived in a small house that had once been an old barn. The creepy cement basement was home to salamanders and snakes, and bats sometimes took up residence in the attic. We didn’t have the latest electronics (which isn’t saying much when you’re talking about the late 70’s, early 80’s). The giant television encased in a wooden frame looked expensive, but the tube had blown in it years before and it actually served as a stand for a second TV. This other TV was smaller, with rabbit-ear antennas adorned with tin-foil bow ties for better reception. A wooden spoon was always kept handy for those times when the picture would turn a greenish tint and start to roll – sometimes all it needed was a good whack on the side with the spoon for the picture to pop back on the screen. While watching the “green TV”, we squished onto a couch that had boards underneath the cushions to help with its sagging infrastructure. A garishly bright, multi-colored afghan covered juice stains and places where the stuffing was showing through the couch cushions.

As a teenager, I felt embarrassed that we didn’t have nicer looking things and felt I had been cheated of the cool things some of my friends had experienced. I would look back on my childhood and see all the sacrifices I had made. Woe is me! No Disneyland! How terrible that I didn’t have lots of fancy outfits, or gourmet meals, or live in a big, beautiful farmhouse with luxurious furniture. Think of all the awesome TV shows I had missed because of that stupid green-tinted TV and lack of cable. Man, it was SO NOT FAIR!

But now? Now I see all the sacrifices my PARENTS made.

In choosing to raise us the way they did, they gave up all those things too. No trips to far-off places for them. They wore the same outfits year after year, no matter the changes in fashion. Their idea of “eating out” was occasionally ordering pizza or Chinese food. And I’m pretty sure that a renovated barn was not their idea of a dream home either.

They didn’t focus on all of those things. What they did focus on was raising us – keeping a roof over our heads, clothes on our bodies, and food in our mouths. They dedicated their time to painting each of their little masterpieces by teaching us kindness and compassion, shaping our behavior with rules and structure, and instilling in us a sense of right and wrong. Inadvertently, they also gave us the ability to see what’s really important in life and to recognize the difference between “wanting” and “needing”.

Ironically, after pledging in my teenage years to do everything different from my parents, I now look to my childhood and my parents for guidance in raising my son. My teenage self would be surprised at the way I now almost idealize some of those childhood memories. It didn’t matter what we were eating; we ate dinner together every night. That creepy basement made a perfect “haunted house” and a fantastic hideout for “cops and robbers” games with my siblings. And our clothes? The TV? The couch? They’re all just things, material items that served their purposes. We may have WANTED nicer things, but we really didn’t NEED them.

By circumstance, my husband and I find ourselves living paycheck to paycheck on a single income. We both still have flip phones. We cancelled cable, and we do not have a plasma or flat-screen TV (much to my husband’s dismay). Our couch (no joke!) has a board supporting the cushions and throw-blankets covering the stains and holes. My husband deserves a medal for driving a car with no AC and old-fashioned hand-crank windows. No vacations, gourmet meals, or trendy clothes. But, really – the things we have perform their functions…and they are very much appreciated. After all, there are so many people in the world with so much less.

So now I hope my parents can look upon their “work of art” and see that the hands are respectfully folded, the mouth has relaxed into a bittersweet smile, and the eyes have softened with age, wisdom, and love. Our focus, just like my parent’s focus so many years ago, is on raising our child to be a happy, healthy person, who tries to do what’s “right”, gives his best effort in all he does, and treats others with kindness. You know…the important stuff.

I don’t need to look any further than my own parents for inspiration.
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