PERSONAL ACCOUNTS
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Amy's Account
...Amy publishes amazing accounts of her family “s everyday journey through autism spectrum in a blog you can access at http://brotherskealiher.blogspot.com/
Chasing the Sunrise: One parent’s journey back to joy, By Amy Kealiher
The moments my sons were diagnosed with autism are forever branded into the fabric of my mind. My father sat beside me as the neurologist I had known mere minutes delivered the life-altering news to me with as much compassion as a toll booth operator. “Your son has autism. You need to get him into services as quickly as possible.” Autism? Like Rainman? My son?
I will never forget the sound of those words; he spoke them as if reading the items on a grocery list. Then he left us, blinded by the room’s white sterility, holding my beautiful, perfect son who was now announced to be not so perfect after all. I remember the drive home, the phone call to my husband, to our families. I remember sitting in my sister’s garage later that day, smoking a cigarette and weeping, utterly overwhelmed by agony and fear. She asked what I was going to do. I can’t remember what I said, but I remember thinking, “Whatever it takes.”
Every parent of a child with special needs harbors similar moments in the recesses of their hearts. The moments that changed their lives. The moment their futures jumped tracks, rattling down some dark, foreboding switchback, leaving the brightness of what was to fade behind some lost horizon. When my son was diagnosed, I was in the midst of graduate school hoping to be a professor of ancient philosophy. Instead, I became the stay-at-home mom of two boys on the autism spectrum. I teach, not Plato, but sign language; I read, not Aristotle, but information on how to toilet train the autistic child. Not exactly the intellectual life I had imagined, which begs the question every parent of an autistic child must face: how do we, as parents, survive this force of hand? Where, in a life of home programs, therapists, sleep deprivation, hand flapping, insurance coverage refusals, sock picking and GERD, do we find the space to thrive as human beings? When a child is diagnosed with autism, no one mentions that we parents will have special needs too. There are no warning labels. No pat answers for what to do when you have been awake for days, weeks, months and your motor skills and mental faculties begin to fail. No fool-proof method for coping with the financial responsibilities that seem both ever-mounting and eternal. No one reminds you to brush your teeth, grocery shop, or pay the bills. Current events meld into matching fields of six; life is lived in 28 minute increments to a Baby Einstein® soundtrack. Some days, simply remembering to breathe takes effort. Yet, despite the weariness, the sorrow, the overwhelming nature of it all, we too must live. And, not merely survive, but live lives worth living in and of themselves, not simply for the sake of another. We too must thrive if we are to finish this marathon.
When at that crucial moment we, as parents, choose to fight for our children, we must also choose to fight for ourselves. Everyday we aid our children in their struggle to communicate, to function in a social world that is alien to them by its very definition, to gain recognition as a valuable individual. But, we must also enable ourselves in this battle. Aid ourselves in preserving our own identities, in nourishing our relationships, in protecting our dreams. My husband and I have been living with autism for nearly three years now. Though we still stand on the threshold, much has changed since that first fateful moment; our senses of humor, our abilities to cope with the unending stress of daily life, and our hopes for the future. We are still frightened, exhausted, angry, mournful; such emotions are inert to human life, painful, yet too precious to lose. They teach us, hone us, protect us, just as fiery coils beneath innocent fingers define heat. The secret is not to rid our lives of pain, but to make a place for pleasure, to embrace laughter, cherish health, liberate our hearts, and embellish the lives that we have.
As cliché as it is, laughter can be the greatest of medicines. It is the suspension bridge swinging lightly above the devastation. Over the last three years, I have experienced things I could never have even imagined four years ago, most of which are too unsavory to mention to anyone living outside the world of autism. Things like physical aggression, self-injurious behaviors, feces smearing, months without sleep, 24 hour EEGs. Subjects, none of which appear to incite hours of laughter. Yet, some of the most healing therapy sessions I have had as a parent of an autistic child have taken place around a small, coffee shop table with two or three other moms, laughing at the absurdity of it all. Black comedy. By itself, in its original context, none of it is funny. When you are mopping the floor for the 20th time, or examining the indentation and shade of your newest bite injury, or duct-taping your child into his pajamas, there is no mirth. But, when you are retelling some unspeakable clean-up tale to a friend over steaming lattés and warm scones (feeling, for a moment, like a human being again), and she makes some off-color chocolate reference, the humor leaps boldly onto the table and changes yesterday’s weeping into tears of hilarity. Such are the moments that nourish human sanity and lubricate the spirit.
Unfortunately, laughter alone, however freeing, cannot repair the physical damage inflicted by a life of unrelenting stress - there is a reason sleep deprivation is a world-wide method of torture. The demands placed on the parents of autistic children are nearly unbearable. We are parents, educators, program organizers, therapists, behavioralists, medical experts, insurance company lobbyists, and nurse-maids. We feel we are expected to fit a week’s worth of work into the waking hours of one day, and sometimes we are. The icing on this indigestible cake is a cloying mixture of endless sleepless nights, constant financial pressures, depression, marital fractures, anger and guilt. In view of such a course, the word “exercise” sounds like some unfathomable expression of ancient Greek. Yet, without exercise, fatigue grabs hold, bodies weaken and angers build. For many, for me, this is a difficult and seemingly impossible lesson to learn. Only recently, after floundering in weeks of the darkest despair, did I begin to listen to my body, to force my personal needs into my family’s day, and to demand one daily hour of solitude. I take this hour every day, regardless of the previous night’s sleep or the coming day’s pressures. I do not exercise to be thin, beautiful, or to impress colleagues; I exercise to be strong. Simply put, I run to release my rage. The benefits have been countless. My disposition is more temperate, my endurance greater. I recover from a difficult night much more quickly, my mind is sharper, I can play with my son without difficulty, and I am still standing at the end of the day.
As a care giver, demanding time for ourselves is often our most difficult challenge. Within the first ten minutes the kids are screaming, spouses are frustrated, and we are panicked and riddled with guilt. But, if we persevere, if we close our ears and our eyes and give ourselves this small, important pleasure, the craziness will pass. Our families can survive 60 minutes without us. Despite appearances, the sky will not fall. Soon this demand becomes as routine as our child’s favorite food, our bodies begin to lighten, our hearts to soar. Run, walk, jump, swim, dance, play: embrace everything that cheers the soul.
Laughter and health are invaluable in and of themselves, but they are also the first steps in liberating the heart. Depression, despair, sorrow, angst – these are the daily emotions of parents of special needs children. Some days are better than others, but as we struggle to help our children learn, as we watch our other children go without so that their brother or sister’s needs can be fulfilled, as we see a gulf growing between ourselves and the rest of the world, these dark emotions slip in and quietly take control. Recognizing our own desires, protecting our dreams, pursuing non-autistic interests becomes impossible. We begin to forget the opportunities that beckon just beyond our doors.
Learning to laugh and strengthening our bodies carves out an opening through which the light can return. It gets us out of the house; it quiets the noise around us so our internal dialogue can both speak and be heard. It pulls us back into the world and reminds us that we too are invaluable simply because we are. Our happiness is crucial, not only to our own lives, but to the lives of those we love. And, whether it is a career, a hobby, a life-long dream, or simply a night at the movies that nourishes the heart, we must wrap our arms around it and hold on for dear life.
The rediscovery of joy requires that we, the searching souls, sweep all of these things together as pieces of colored glass in a kaleidoscope. To recover our joy we must we gaze upon the truth of our lives through this glass. Our children will always be autistic; our lives will always be different, on the best of days I would say special. We have the opportunity to see the world through a new strange and intricate perspective. When we struggle to rise to the challenges before us, we don the hero’s robe, and so do our children.
When I look at my sons, I try to truly see them. They are children: unique, growing individuals. They experience the world in first person. When I look at them, I remember what it was like for me to be four. I uncover the childhood themes that transcend autism: love, inclusion, laughter, safety, confidence, pride, acknowledgement. I rekindle my childhood desires for these things and the pain I felt in their absence. Of all this, I fashion a mental transparency and gently place it over my children. And that is what I try to see and try to give them, every day.
I work to recognize my limits and thankfully embrace the help that is offered. I do not judge my life against inappropriate paradigms, like that of my sister, my parents or my grandparents. I allow myself to rage, to cry, to gnash my teeth; and then I scrounge through the rubbish for some crumb of laughter. I wistfully look back on that lost horizon and discover how to renew my dreams within the boundaries of this complicated, autistic life.
We are who we are; we have what we have; we love who we love. Our past choices cannot be revoked or revisited; our future is ever-changing. There can be sadness in this, but so too can there be joy. Regardless of how lost we feel, we alone control the landscape of our lives. We choose to live in the shadows of desolation or upon the peaks of hope. And, no matter where we find ourselves at any given moment, we can always pack up and move.
We choose what we will do with the hands we have been dealt. Let us choose our children; let us choose ourselves.
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Dawn's account:
Upon learning that my child had Autism, I felt total disbelief and a devastating lost. The dreams of my son becoming a typical child and adult seemed so distant at that point. I had heard of Autism, but I didn't know the details of the disorder and never thought that any child of mine would fall into the spectrum.
I started to search the Internet for answers to questions such as "How does a child get Autism?", "Who is more likely to have Autism", and finally, "Is there a cure for Autism?". After days of searching for answers I realized that no one had a definite answer to any of my inquiries.
I decided that the best thing to do for my child was to search for programs that would address the issues that he had. I located a few and chose one.
My hope for my son has not diminished and I no longer feel at a lost. After many conversations with doctors, parents, teachers and therapists, I realized that my son's current condition does not predict his future. There are a lot of sincere and genuine teachers out there
who really want my son to get better and I feel that my family is not in this fight alone.
DAWN
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Mark's account
The Diagnosis: Now What?
by Mark
Usually, a diagnosis from a doctor leads to answers and treatments. If your child has poor vision, you get glasses. If your child has a hearing problem, maybe tubes will correct the problem. Stomach trouble? Often a change in diet will alleviate the problem.
But for many families, hearing the diagnosis of autism means more questions and fewer answers. Doctors seem to shy away from prescribing specific forms of treatment or therapy – that’s up to the parents to figure out.
My wife and I started a series of medical tests when our daughter’s speech was noticeably delayed at 15 months. She spoke no words, responded to very few words, and her babbling was minimal. The first thing the doctors wanted to check was her hearing, which was fine. We then saw a noted child development psychiatrist, who told us that she couldn’t put her finger on it, but said vaguely, “I don’t think she gets it.” Next, a neurologist examined our daughter’s brain with an MRI and EEG. Everything seemed okay. A geneticist asked us about our family history and said our daughter looked fine physically. An extensive series of genetic tests turned up no answers. All of the doctors agreed something was causing our daughter’s delays, but none of them wanted to speculate about what it was.
It wasn’t until we went to the Kennedy Krieger Institute in Baltimore – an appointment that had taken several months to schedule – that a doctor reviewed all of our daughter’s medical tests, observed her, and said, “If you look at the autism diagnostic manual, she would be somewhere on the spectrum. I can’t tell you whether it’s severe or not, and I can’t tell you what will happen next. But you’ve got a lot to learn and you need to do everything you can for her in the next year.” He then gave us some general information, a list of phone numbers, some general tips, and sent us our way.
I’m not criticizing that doctor or any of the other doctors we saw, but what a heavy burden to put on non-health professionals. It was somewhat overwhelming to realize that we had to decide how to treat our daughter’s condition during her most important developmental years.
To make a long story short, we read everything we could, talked to everyone we could, and immersed ourselves in our new “job” – prescribing the best possible therapy for our little girl. We have been fortunate to find schools, in-home programs, camps, county services, support groups, and other resources that have helped our daughter make important steps. We often think about people who live in parts of the country (and the world) where these services are not available – and the many people who need these services but can’t afford them, or don’t know how to find them.
The Autism Speaks website talks about four steps parents often experience – shock, sadness or grief, anger, and acceptance. In the past eight months, my wife and I have felt all of those things, but acceptance seems to be winning. What keeps me going is something a mother of a severely disabled child told my wife: “After a while, you stop expecting your child to ‘catch up’ with the other kids and instead celebrate each new thing she does and learns.”
And you know what? Thanks to caring family, friends, teachers, and therapists – and an adorable, curious, loving daughter – we have a lot to celebrate.
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J.A's account
We came to learn of our son autism in stages. In some ways, I think it was easier to process, as the information came to us gradually, and so when the formal diagnosis finally came, it was disappointing, but it was not a terrible shock. Mostly I felt a mixture of sorrow and fear for my son, for the difficult path that lay ahead of him, of us. My heart ached for the beautiful boy whom I adored beyond all reason.
In retrospect it is easy for me to see that signs of Eddie’s autism were evident early on. In fact, if I’d had my second child first, I would have intuited our son’s autism much sooner. Eddie was just over 2 years old when we got our diagnosis and we had been on waiting lists for several months. While we had begun working with Infants and Toddlers when he was around 19 months old (shortly after my second son was born), my husband and I thought it best to reserve judgment until we had a formal diagnosis. Once we did, we began our efforts to get Eddie the services he needed. For weeks, it seemed as if there were no answers, I felt as though I were on a treadmill. I kept reading about all these services and programs, ABA-Verbal Behavior, Floortime, etc. but I had no idea where or how to go about getting these services. The more calls I made, the more questions I had, no one seemed to be able to give me any concrete answers. I was both dismayed and confused by the overwhelming amount of information and the lack of any coordinated process whereby I could discern what services were available and appropriate for my son. Moreover, the bureaucracy that surrounded the IFSP process and county services was mind-boggling. In the end, we decided to hire an educational advocate who could help us navigate the system and help us get a program in place for our son.
Emotions run the gamut, but most days I’m too busy and too tired to allow myself the indulgence of tears. Don’t get me wrong; I’ve had my share of really tough days, of exhaustion to the point of incoherence. When thoughts of lying down in inappropriate places, like on the floor of an aisle at Giant, or beneath my desk at the office. And “yes, I have actually slept on the floor of my office cubicle, (and a few other unmentionable places), if you must know!”
It is at such moments when I seriously begin to wonder how much longer I can go on like this and I begin to feel truly afraid because I can’t imagine going on and I can’t imagine not going on. Somehow though, I just do. I get through each day and do the best I can and try to remind myself, that as hard as it is for me, it is that much harder for Eddie and that if he has to get up, get dressed and face the world each day, then, by golly, so must I. Even if we both wind up banging our heads against the wall, so be it—hey—it’s a mother son bonding experience!
There is never enough time to do everything, but I’m learning how to make more of the time I do have. On good days I remember to breathe more often. On great days I tickle both boys into a state of ecstatic delirium and marvel at the divine perfection of those little whirling dervishes in my living room.
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Andrea's account
On good days, I feel having a son with Autism makes me a better person. I smile indulgently when I see another child melting down in a public place. I seek out the cashiers and baggers with developmental delay at the store, even though it takes twice as long to check out. On those good days, I feel having a special needs child has shaped my priorities. I don’t stress out over spilled milk or even marker on the walls. I am able to cheer the smallest victories like putting on socks and shoes for the first time, and every successful trip to the potty. I have learned that Jason is valuable just because he is mine. It is ok if he doesn’t grow up and attend an Ivy League college, or even any college. I truly mean it when I say all I want for him is to be happy and healthy. Those are the good days.
On bad days, I have feelings I am not proud of. I envy my friends and their typically developing children. I covet their ability to go to the store without worrying about whether there will be an elevator there. I am jealous of how they don’t need to travel with a bag full of special toys to use as rewards when their child finally stops tantruming after 30 minutes. Some days I mourn what I feel I have lost. I grieve for the grandchildren I may never have, the graduations and wedding I may never attend. I am sad that my son can’t go to birthday parties, that he will never play Little League Baseball.
Fortunately, the good days far outnumber the bad ones. For every time I put Jason in the car seat more roughly than is necessary after dragging him across a parking lot; there are 2 times when we snuggle on the sofa watching videos. For every time he bites me; there are 3 times when he looks me right in the eye and smiles a huge smile after doing something he thought he wasn’t able to do. I see slow progress, 2 word sentences are becoming 3 word sentences. At the age of 5, Jason is finally starting to get interested in other children. Now, in addition to attending a special education preschool he also goes to a regular preschool with a shadow. He is potty trained! Sure there are bad days, but they are getting less frequent. I know with the help of Veronique, and the other members of Jason’s therapeutic team, he will continue to progress. I am confident that he will reach his full potential, whatever that means. And I know that I will continue to be proud of him every day.
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