Miracles in the Flaws

Overcoming Adversity Blog Nosh Magazine{Originally Published on Lizzie’s Home}

When I was nineteen years old, I found myself taking a front-row seat in an honest-to-God, wish-I-could-bottle-that-feeling miracle.

j-in-phototherapy-unit.jpgAfter a twenty-eight hour labour, an ugly, red, scrawny mess of arms and legs was twisted from my body, four weeks before his due date. The conehead my son sported from his prolonged journey down the birth canal was very pronounced and truly awesome to behold. His Apgar scores were low. He was whisked away for some oxygen.

At that point, I didn’t care where he went, as long as he was being cared for appropriately and I could cover up the bits of my person that in any other circumstance would never be displayed. It is amazing how the most prudish of women can become the most liberal when in the throes of childbirth. There were bits of me that were irreversibly altered by the birthing process but in the end those particular battle scars would fade, and new ones would take their place.

On the second day after his birth, J turned an alarming shade of buttercup yellow which had the doctors scrambling for the big scary humidicrib with fancy lights and cords. You know, the type with holes in the side where distraught parents are permitted to insert only their hands to stroke babies they should, by rights, be cradling in their arms.

My little six-pound-nothing imp modelled a hastily cut blindfold of black vinyl almost every moment of the first week of his life. We were allowed to remove him from the phototherapy unit for feedings and changes only. The rest of the time he was to lay naked and sunbathing, save for his Zorro mask, under special lights designed to speed up the expulsion of the bilirubin from his blood. There’s a reason why babies are meant to be covered up. Meconium poops are legendary, and more so for babies undergoing phototherapy. We didn’t even have the luxury of a nappy to contain it. Every time J wet or soiled, his entire bedding arrangement had to be changed and sometimes, there needed to be a thorough disinfecting of his crib. But this was a good sign – the more explosive the soilings, the less yellow he appeared and the faster he got better.

My then-fiancé and I finally took this tiny creature home one week after the birth. To say we were unprepared for life as parents was strikingly apparent about four hours into our first night at home. J did not sleep. Breastfeeding was difficult. We had borne this child smack dab into the middle of a heat wave in a South Australian town noted for its perpetual red hue and blisteringly hot summers. Sleep deprived, emotionally exhausted and just plain stupid, I managed to convince myself that bottle feeding was the far better option and so J was slurping down artificial sustenance even before his official due date rolled around.

The next two years were surprisingly ordinary. We conceived another son, ran away to Bali to get married, saw Kuta in all its muddy wet season glory – not what wedding dreams are made of! – and consequently came home unmarried. Our second son was born in due time and the wedding eventually occurred on home soil, much to the delight of the parents. Later that same year we had a daughter, rounding out the scorecard to three children in three years.

I was barely 22 years old.

Autism snuck into our lives quietly, set up shop without us realising it, and eventually manifested itself in physical symptoms in our son, whom we had diagnosed by a child assessment team at age 3½.

Those first few years were excruciating. We agonised over every small decision concerning our J’s welfare. Every single behaviour, word spoken, instruction performed, everything. At diagnosis, J was developmentally on par with fourteen month old children. Essentially, his two year old brother had overtaken him months beforehand.

But we got through it.

When the Department of Education psychologically assessed him during his kindergarten year at age four, his report was prefaced by the following ‘encouraging’ information:

Half of all students will score in the Average range. Thirty percent of children will either fall in the Low Average or High Average range. Eight percent will score in the Well Below Average or Extremely Low range.  We also calculate a child’s percentile rank – if your child scores in the 24th percentile, it means that if we tested 100 children of the same age 24 would test lower than your child.

Our son had an overall score on the first percentile.

When he started primary school several months later and a government grant had to be secured in order to buy the hydraulic ‘doctor’s bed’ needed to create a changing area in a female staff toilet, I swung wildly between despair and indifference. In public, I was a hardened special needs advocate, but in private, I sobbed at the thought of my five year old son still needing nappies in the playground. He would be six years old before we were finally rid of that particular curse.

But we got through it.

Also at the age of five, a speech assessment saw J score between just the first and the fifth percentile for communication – and that was after two years of extensive speech therapy.

But we got through it.

We waded through all the NEP meetings and the special ed classroom tours and the birthday parties comprised solely of children who by no fault of their own, have problems being social. We dealt with the misunderstandings of the condition, the stares, the meltdowns, the accusations, the generalisations. We learned not to take to heart the sixth party or event in a row that we hadn’t been invited to. We dabbled in dietary intervention but forewent medications or strict behaviour programs. We cried and cried until no more tears came.

And then something miraculous happened.

One day, many years into our journey, it suddenly occurred to me that autism was not the first thought that popped into my head when I woke up each morning. I no longer introduced my son to strangers and then, when he was out of earshot, hastily added the “he’s autistic” explanation because I felt as though I should apologize for his indifferent gaze or funny hand flapping. I no longer saw the autism before I saw him.

People are a bit hesitant to talk about miracles these days. We only have to look around us to find all evidence in the world that miracles don’t exist. Children die from cancer. Others are abused. Still others are stricken by horrible disfigurements and left in orphanages to suffer out the rest of their days. Yes, life is unfair.

Most of us prefer logic over faith. If we can’t prove it, they don’t want to know about it. It is no miracle that my son was born. Millions came before him and millions are yet to be created. People endure far, far worse illnesses, conditions, or situations than we have ever had to cope with. There are no miracles in my son’s frustrated howls or in his catch-it-when-you-can affections. People often ask me how, after all the struggles we’ve been through and are yet to face with J, how I can still consider this flawed child, his wonderful yet slightly altered existence, miraculous.

But the miracle doesn’t reside in him.

It’s that I am proud to have been the vessel that bore him.

And the miracle is in that pride.

* This is the first in a series I’m calling The Mama Bear Files.  Originally written January 2008.

Editors Pick from Michele of Sparks and Butterflies.  I first found Lizzie when I was researching Special Needs blogs for a gig I had, and I was hooked.  Lizzie writes about her everyday life with her family in Australia and gems like this entry a spattered throughout.  Her wit is not to be missed.  Check out her blog, the original post, subscribe to her feed, and follow her on Twitter!

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One Comment to “Miracles in the Flaws”

  1. Barb says:

    Oh … how refreshing … luv your “we got thru it” — as a grandma of a pretty blue-eyed, reddish blond hair sweetie just over age 4 who does not TALK ** and likely is at minimum mildly on the Autism Spectrum, I came across this Blog from a Google Alert — imagine 20 years ago, one would go “Huh?” blog — google not in the vernacular … eh ? I am copying this for my daughter who has Alissa 4 and Andrew 2 — not as close as your 3 children but 23 mos. apart and keep her hoppin’ — they also live in an over 200 yr old house [near Gettysburg : famous related to our sad Civil War ...] and don’t have a kitchen sink or bath faucet – have a nice white clawfoot tub but get water for it from bath sink !! ugh … think my daughter is being pretty good to put up with this nearing 3 years !
    Her daughter goes to a State-Fed. funded program 4 a.m.s per week and God Be Praised !
    ** her dad emailed me that she just said “no” & “baby” & he’s pretty sure she said “ball” at home.
    usually not going WHOOPIE for these as first words when a child is 4, right ?! she’s never been Mute, lots of babble since early age. but her 2 yrs., 4 mos. brother actually says no Words but “uh oh!” ….. and neither parent a Late-Talker …. guess Einstein did not talk til about age 4 or ? I’ve seen mention that today he may have been diagnosed on Aut.Spec. ? ?
    I so admire your wit and attitude < when it’s said that “Attitude is Everything” in Life, I agree …. if you think you can or you think you can’t – you are right !! Henry Ford ?
    I will be back to read more – think U hooked me. Keep our Darlin’ in your prayers & I will keep you and yours in my thoughts & prayers …. even tho’ people can be far apart physically, when we ‘resonate’ with another’s situation … ! !! helps us feel Not Alone, Gramdma Barb