HOPE After Diagnosis

26 Nov

First appeared in HerWord.com on 19 November 2007.

This article is an open letter to parents whose children are newly diagnosed with autism, with special mention of J and S, both moms from different circumstances and vastly different lifestyles, but united by a common interest: their very young sons with autism.

J I know only through an email forwarded to me which was posted in a forum for parents of children with autism. She is a stay-at-home mom of three kids. Her middle child is a four-year-old boy diagnosed with Autism Spectrum Disorder in March of this year. Her son has received sporadic therapy since diagnosis.

S is a recent acquaintance. I met this very accomplished woman through her husband, an old friend I lost touch with many years ago (try 15 years) and just ran into very recently. Her son is also four, diagnosed with PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified) last year, and has been receiving comprehensive early intervention since then.

I thought to write this for them, in the hopes that they might run into this in the wide world of the Internet, and imagine that I speak to them directly — one to one, heart to heart, mother to mother.

Dear J and S,

Like both of you, I too, am a mother with a son with Autism Spectrum Disorder. In my case, the diagnosis came almost 12 years ago, when my son was eighteen months old. However, my son did not simply “fall within the spectrum;” at 18 months, he was at the tail end of the spectrum, with the severest symptoms of classical autism. The pain of the diagnosis has definitely been blunted by time, but every now and then, some twinge of remembrance comes up and I am still left breathlessly bereft of words. The son he could have been is but a wisp of a dream; the son that he is now — strong, vibrant, opinionated — is our reason to be grateful for every single day of our lives.

Many years ago, when the diagnosis rudely interrupted our “perfectly normal” lives, my husband and I were almost always alone in our day-to-day struggles to conquer the dreaded A word. Sure, we had a lot of well-meaning relatives and friends, but most were simply too caught up in their own lives to immerse themselves in ours. Then, too, others shied away from us when the diagnosis became a constant part of our lives. You will soon find out that autism is a test of strength of heart, of courage, of friendship, and of kinship. As you journey the different milestones in your child’s life, you will see many people cheering him on by the wayside, as you will also notice the heartbreaking absence of many. Hold on to him, then; he will need all the love he can get from you.

As a young couple, we also struggled with finances many times; we also grappled with choices that were consequently limited by the amount of money we could spend. We found out that the diagnosis carried a very heavy price. Specialists cost money. School programs cost money. Supplements cost money. Therapies cost money. Nothing, it seemed, was free. It was a vicious circle of real-life economics, but as parents with two small children, we learned to make do or make without many times. Pag maikli ang kumot, matutong bumaluktot (loosely translated to “if the blanket is short, learn to bend”), so goes the old Filipino saying, and we lived this constant balancing act of choices daily for many years.

I understand many parents’ desperation and feeling of helplessness. More so today when nothing is still free, except perhaps the wisdom we, old hands, pass on to you. School programs still cost money. Doctors, specialists, supplements, and therapies, too. And this is precisely why I rail at the injustice of a $1,200-for-the-first-consultation autism doctor, or any other specialist, doctor, teacher, or therapist who charges an arm and a leg (and maybe even a kidney) for help they can render their fellowmen. While I marvel at their intelligence and the keenness of their insights, their deft perceptions and their breakthrough findings, I am totally heartbroken over the many people who could not be reached by their wisdom, power, and influence, but for money. People like you and me. And there are more of us than they can ever imagine.

But all is not lost. Our overwhelming love for our children and faith in their abilities can move many mountains. I just wish I had the wisdom of hindsight then. What I know today would have saved me many a heartache and disappointment. But I share with you all I know, as I learn from the mistakes of my past and move on to the possibilities of the future.

First, accept your son unconditionally. Love him for who he is, not for who you want him to be. Autism is a way of being; it is a way of living, and breathing, and thinking, for our children. What we can do as parents is to help bridge these differences with the rest of the world. We crack the walls around them and help them make inroads into the big world out there. We help them cope, and thrive, and be happy about themselves. If you had a son with a flat nose, you would not bring him to a plastic surgeon and say “He has a flat nose; please remove it and make it better.” It’s a simplistic analogy, but it also applies to our autistic children. We don’t tell the doctors to please make him “normal” (though some of us probably still do); we ask them to help us help our children adjust and cope and manage their abilities and dis-abilities. By accepting them, we accept their differences and celebrate their potentials. As parents, all we can really wish and pray for is our children’s happiness. “Happy” certainly does not have to be limited to our sense of “normal.”

Second, never say never. My husband and I, on occasion, have discussed the idea of a pragmatic End Date for my son’s many therapies. Over the last eleven and a half years, we’ve tried almost everything we could to help our son and, despite best intentions, we have not been very successful in mainstreaming him into “normal” life. Moreover, living with autism is a tiring quest. Perhaps I can speak of the hardships with more authority than others; to this day, my son still has issues with aggression and anger management. Yet, much more than just my son’s problems, I think that the “battle fatigue” comes from apathy and indifference. Worn down by the many walls I have to shatter each day trying to build bridges of communication, worn down by the schools who reject us and the people who ignore our son, worn down from the constant struggle of our daily lives, I am sometimes honestly tempted to give up and give in.

“Enough already,” my mind screams. “Never again!”

And then, just then, I see the glint of recognition in my son’s eyes. “Mama, please don’t let me down,” his eyes implore. His lopsided grin tugs at my heart.

“Never say never,” I then counter. Emboldened with fresh resolve, I postpone the End Date to another year, some far-off date in the future, which, given the way I turn putty in my son’s beautiful eyes, will probably never come.

You are your child’s only advocate. Never say never, not for him.

Third, always presume intelligence. I learned this one the really hard way, and I’ve only just found out how much we all really take for granted in this world. We all measure learning and intelligence the way we are taught in traditional schools. To learn, one had to sit still and listen. To understand, one had to ponder silently and ruminate on the ideas set before us. Any other diversion from this narrow path does not fall into our society’s accepted measures of intelligence.

My son has a label: low-functioning. He is nonverbal. He has a lot of self-stimulatory behavior or stims, in autism jargon. Some of them are vocal — grunting, whining, driving sounds (as also the uncanny sound of a car backing up), or loud shouts of pure joy. Some are physical —he paces, twirls, flaps, ritually touches corners and knocks his feet on walls. He is toilet-trained, but every now and then, still has “intentional accidents.” He can pee on demand (a truly amazing feat considering it’s very hard to squeeze urine from an almost empty bladder, try it and see) and sometimes, he likes to play and splash on a pool of his own urine. His pointing and imitation skills are minimal, at best. Some days, he hardly looks at us at all.

And so the label has stuck for many years, from one school to another, from one program to another, from one teacher to another. Our current programs have moved from the ambitious start of an academic program to what his teachers all thought as a more realistic, rational approach. We focus on self-help, on independence, on activities of daily living, and nothing more.

And then one day, just very recently, a kind parent, another angel in our lives, showed me another door where I saw that my son could understand more than what we had presumed he was capable of before. (More on this, another day.) There was real intelligence hidden behind the label! This episode totally changed my mindset about abilities and dis-abilities. I’ve only just discovered how to plumb the depths of his intellectual abilities, and it is a breathtaking ride every single day. It’s amazing how he continues to defy prognosis and labels!

Fourth, work to get what he needs. Money always speaks volumes, true, but money will only get one so far. No one can walk the journey for you, except you. To help your child with autism, parents must work — hand in hand with teachers, doctors, and everyone else involved in their lives.

I speak of this with some specific ideas in mind: ABA and the GFCF diet. Applied Behavior Analysis is an indispensable tool for shaping social behavior and learning. While its presence in the country is a welcome development, it remains an expensive and exhaustive proposition for the ordinary parent. The hours are long; most early intervention specialists would recommend at least 40 hours a week of intensive ABA. The fees are also steep; forty hours used to translate to roughly PhP50,000, with adjustments for escalating costs and inflation.

My family could not afford the complete forty-hour package by our ABA provider, so we improvised, as most parents are wont to do. I taught myself ABA. I learned from my son’s teachers, and their passed-on knowledge was invaluable. I bought books and journals on the subject; what I could not afford, I borrowed from friends and the growing library of Autism Society Philippines. I surfed the Internet for so many good resources. I attended seminars and trainings; these, I would save up for year-round, a little here, a little there, so I could schedule some leeway in the budget.

And then I proceeded to build a “playroom” (at first nothing more than a clean corner of our living room) and a resource of things I would need to teach my son basic skills. They weren’t always expensive toys, although because of my son’s aggression, we always opted for the more expensive wooden types when we could afford them. Some toys I picked up at Divisoria, others in cushier establishments. Often, we improvised again and again, like the day he had just ripped apart his 10th plastic drum. We gave him an overturned kettle and a metal spoon and he started banging away happily.

And this holds true for the Gluten-free/Casein-free diet, the cornerstone of the biomedical intervention many parents advocate for their children. One does not necessarily need expensive items and imported goods to implement the diet. Sometimes, all one needs is a keen eye (for reading labels), patience (to go through the grocery aisles in search of acceptable food choices or even the wet market, say, to have sticky rice ground fresh), and a lot of creativity. Crispy kangkong dredged in rice flour makes a great snack. Or even the ampao we all love as little children is a great starting point. Start simple, start small, and then work from there.

I think the driving force behind this suggestion is that, as parents, we must educate ourselves and use what we have to teach our sons ourselves, if need be. The impetus is greater for those of us whose kids need extra help. While I certainly don’t advocate doing away with professional help, parents are in the best position to step up to the challenge and start their child’s education. You can’t keep handing your child over to someone else. At the end of the day, that child is yours, to keep, to hold, to have.

Fifth, don’t be a victim. We all want recovery. Many want a cure. But these are two very different ideas about autism, and this has led many parents astray. They search for every possible “cure” and end up wasting time and money. They want the cure so much that they sometimes fail to see that the placebo worked just as well. They want “normal” so much that they can almost taste it. And they get disappointed, dejected, and depressed when there is no cure in sight.

Listen to those who’ve “been there and done that;” many times, their experience can be a divining rod to determine the paths we wish to choose for ourselves. At the same time, learn to take their advice with a measure of skepticism. After all, what worked for one child may not work for another. This is the most difficult part of autism; there is no one-size-fits-all treatment as also there is no single cause for it.

Be wary of choices presenting themselves as cure-alls. Sift through the information. Weigh your options well. Read and study and research before making a decision. A parent’s best weapon is always education.

And lastly, listen. Listen to your child. Verbal or nonverbal, he or she is the best mirror of your parenting. He may not be able to tell you always, but if you listen well, he will “communicate” with you. He will reach out, perhaps not in the way you dream he will, but he will. Open your heart and listen.

Autism is not an easy road to take, I remind you now at the beginning of your lifelong journey. Be brave. Be strong. There are difficult times ahead. But fear not, for it is also a most rewarding and most meaningful voyage into previously uncharted territories.

You are the Magellan and the Columbus of your child’s New World.

You have a blank slate to help write the map of your child’s destiny.

Use this power well.

 

The recently concluded Autism Society Philippines National Conference (November 10-11, 2007) had the theme of Hope After Diagnosis. The question most parents face when given the devastating diagnosis of autism is “What do we do next?” The ASP NC attempted to present choices to parents facing a most difficult crossroad in their lives. Be it educational, biomedical, behavioral or medical, the message is clear: Autism is not a tragedy; ignorance is.

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2 Responses to “HOPE After Diagnosis”

  1. leira November 27, 2007 at 2:38 am #

    This letter speaks so much wisdom from a mom who has been there and done that. I have learned so much from this article and you are right about so many things. Your 2 friends are lucky to be reading this because this letter will help spare themeselves of the pain and the heartache that most of us have gone through..

  2. jackie June 24, 2008 at 1:49 am #

    THis explains so much of what i have gone through, this article should be read by the parents who are still in denial of their childs condition and desperate to find cure that as we all know the is no cure for autism, improvement… the right word to use. And to add to this my daughter school is named HOPE ( Heart of Peace) it is located at Cavite, Philippines

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