Archive for May, 2010

Women Who Have Walked My Son into the World

May 12, 2010

So I have to give credit where credit is due. I don’t have this healthy, brilliant outlook on autism and life in general based on the heaven-sent inspiration that pours through the windows of our suburban split-level every morning. Rather, it is the result of the support, insight, and experience of trained professionals. C. J.’s many therapists and teachers have all made what might have been a seemingly destructive diagnosis not as intimidating as it first appeared.

Looking back about one and a half years, I recall initially feeling shell shocked when EI evaluators suggested that we pump our son up on a combination of speech, occupational, and developmental therapies. I couldn’t imagine—or admit—that he needed that much assistance. As a result, accepting the wisdom of the exceptional therapists who came to our house starting in November 2008 was at first a hard pill for me to swallow.

I couldn’t believe that they knew C. J. as well as I did. Nor was it easy to watch him resist their efforts, sometimes kicking and screaming when they asked him to do something as simple as putting blocks in a container. What was even more difficult, however, was grappling with the realization that these intelligent and compassionate women sensed that C. J. required more aid than I was then willing to acknowledge he needed. Over time, however, their skill and experience helped me see the proverbial light that shines on those children who are diagnosed as being on the spectrum. They never gave up on my son, and so I learned that I shouldn’t either. With their guidance, I began to understand that C. J. had not been handed a death sentence.

They started opening doors for him that now continue to swing wider with each passing day. When he started working with EI therapists, he couldn’t even put pennies in a bank without pitching a fit that would have frightened most Catholic priests trained in the rite of exorcism. A little less than a year later, he was laughing and smiling as he matched shapes and named colors.

These ladies saw me at my absolute worst—waddling around my house in an advanced state of pregnancy, constantly looking browbeaten and occasionally spurting tears or snapping at my daughter to keep quiet during therapy sessions. I experienced some of the rawest emotions I have ever been forced to cope with in the ten months they visited my home. Their patience with everyone in our family and their sincere desire to help us comprehend and come to terms with his autism diagnosis were among the main factors that prevented us from falling apart.

Thankfully, the same can be said for the staff at the special-education preschool that C. J. currently attends. As September 2009 approached, I dreaded an end to in-home therapy and the onset of my baby boy being shipped off to school. Prior to his first day at Madison Early Childhood Center, I was wracked with a sense of losing control. I would no longer be there to hold C. J.’s hand or dry his tears. And, unlike when my daughter started preschool, I shuddered at the notion of my three-year-old throwing uncontrollable tantrums in public and being surrounded by people who might not be able to immediately second-guess his needs and wants.

Within a few weeks, however, I gradually began to accept that the goal was not to have others adjust to C. J., but to help him adapt to the world around him. One day, my husband and I will no longer be here. I have very few ways of guaranteeing that, when that moment arrives, my son will be sheltered in a comfortable little box where only men and women who can read his mind will feed, clothe, and support him. Nor is that what I truly want for my middle child.

It is my ambition that, regardless of whether he every fully overcomes his speech impairments or sensory issues, C. J. will learn how to effectively communicate and cope. And that is precisely what the teachers, therapists, and aides at Madison are showing him how to do. More to the point, he loves being in a classroom with other children, riding the bus five days a week, and demonstrating the many ways he is growing and changing for the better.

I recently gave a bit of added thought to a line I heard on the NBC show Parenthood, which features a couple trying to deal with their middle-schooler’s autism diagnosis. A developmental expert on the program instructs the mom and dad in question to work toward “walking their son into the world.” For families tackling news of an autism spectrum disorder, it is far too easy to hide their child or back peddle him into a false safety net of denial, ignorance, fear, and defeat. From my humble perspective and personal experience, it is C. J.’s therapists and teachers who have most tightly held his hand as he ventures into the world of wonderful possibilities that inevitably await him.

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In Good Times and In Bad

May 5, 2010

Even after I gave birth to my first child, my husband and I continued to discuss a variety of topics besides her at the dinner table each night. Granted, Maria still monopolized a good portion of our conversation, as most children do for any proud parents. But we still chatted about the Middle East, local weather, and the Academy Awards.

After having a child with autism, however, things changed. On good days, commentary typically revolves around C. J.’s latest accomplishments at school or a positive report from his teachers, therapists, or doctors. Dialogue between us at the dinner table is usually exchanged in a rapid-fired, “spit out as much as you can while you can” manner.

Apart from the fact that we are helping a one-year-old learn how to use table utensils, we also have a three-year-old who can’t stay put in front of his plate for more than three-minute stretches. One of us needs to forever be making sure that C. J. isn’t streaking through the living room with Ragu on his hands or picking noodles out of his older sister’s bowl. Now add to that the challenge of a five-year-old who is trying to throw in her two cents about what’s happened in her world during the course of the day but who is regularly instructed to “hold that thought” or to “hang on a second.” What you get at the tail end of this equation is a screaming baby who has stabbed himself with a fork, furniture with spaghetti handprints, and an impatient little girl who feels largely ignored.

Just as significantly, though, the combination of said factors results in a husband and wife who could very easily drift apart amidst chaos, constant parental concern, and fatigue that no amount of coffee can combat. By the time all three children are in bed every night, each of us struggles to stay awake, let alone play catch-up with bills, work, and one another. Yes, we do periodically hire a sitter and go on dates. But chit-chat inevitably returns to a certain little boy . . . or his siblings and how he impacts and relates to them.

            So, what do we do to make our relationship work in light of the challenges that routinely spring up around us? For starters, we admit that we don’t have all the answers and that the age-old adage of taking things a day at a time indeed has some merit. And, in keeping with that philosophy, we try not to have weighty, all-consuming bedside chats about where C. J. will be in twenty years or even two. We make a point of not going to bed angry at one another, regardless of whether we resume hostilities the following morning in between gulps of coffee.

Perhaps most importantly, my husband and I laugh at those parenting moments that one can either face with a crying jag or a chuckle. I can’t lie and say that we giggle about everything related to C. J.’s struggles. But we do try to find as many opportunities as possible to adore who he is, rather than resent his autism and our sometimes imperfect way of handling it.

Oh, and we also spend at least one weekend a year away from all three of our children. We purposely head somewhere that can only be reached via plane because anything within driving distance presents too much of a temptation to cut our alone time short and head home early. Nevertheless, it’s not all candles and roses.

Like most parents of special-needs kids, we tend to be a tad on the tired side and so spend at least part of our mini-getaway snoring. But we talk to each other, too. We sit an extra fifteen minutes luxuriating in a restaurant booth after dinner because there are no possibilities of a potential meltdown. We laugh at memories of our many good moments as a family, and we cry at the more difficult situations that we’ve either tackled or are still struggling with.

Best of all, we take a second to remember who we are as a couple. We reaffirm that we are more than parents of a special-needs child. We are two people who fell in love and who are willing to use that love to raise C. J. and his siblings to be strong, independent, and compassionate human beings.