May 14, 2010

Make a Wish

Posted in Life's Little Moments tagged , , at 10:13 am by autismmommytherapist

My son will soon turn seven. He will be one-third of the way through his childhood thanks to IDEA, a federal mandate which enables Justin to be educated in the public schools until his twenty-first birthday. It is difficult for me to believe, as we conduct the multiple celebrations which herald any birthday in the McCafferty household, that technically one-third of my parenting him as a child has passed. It feels like just yesterday I carried him, painfully post C-section, up the unforgiving brick stairs to our humble Virginia abode, where I recall I stepped over the threshold and immediately wished he had a manual to accompany him. One third over and done, no returning to rectify past mistakes, only moving onward to further challenges, and successes. It’s been both endless, and the blink of an eye these past seven years, to be his mother.

During his early years I felt my life was conscripted into thirds as well. One third of my existence was devoted to child care, that endless round of meals, laundry, cleaning, and removal of bodily fluids that accompanies the raising of any child, disabled or not. The second third of my time I spent in research, endlessly analyzing yet another website, article or book with helpful hints to alleviate the more dramatic symptoms of the manifestations of my son’s autism, namely his inability to speak, his giftedness at spinning, and his seemingly permanent stomach afflictions. The last third of my time I endeavored to spend conducting therapy with Justin, six hours a day, most days of the week, trying relentlessly to solicit the slightest reproduction of sound, encourage the tiniest attempt at imitation, or entice the briefest moment of happiness. His happiness, not mine.

For months after his diagnosis I banished happiness, at least the pursuit of my own. It somehow seemed wrong to covet it, those halcyon days prior to the knowledge there was indeed, something incontrovertibly, irrevocably, wrong with my miracle baby. It wasn’t that I felt guilty he was autistic. Short of ingesting crack cocaine while I was hosting him, nobody could ever make me feel guilty for passing on a genetic disorder, with or without the possibility of environmental triggers.

No, my need to preclude happiness from my own life stemmed from the fact that my child suffered, day in, day out, with gastroenterological symptoms, frustration at his inability to communicate, and the onslaught of sensory overload that assailed him constantly, every second of his conscious moments. Quite honestly, my moratorium on euphoria wasn’t just that he was my son, I loved him, and he was in pain, either. I suppose I felt his suffering more strongly because he reminded me of myself as a child, with his love of books, sand and surf, and when his parents allowed it, chocolate. He was my best self, with the addition of autism. Underneath the many layers of discontent was a child who yearned for constant affection, and a deep connection to those he trusted. He, like me prior to turning thirty, desired to please those he loved. He wanted to be a good boy. And those qualities we shared, in addition to our own inviolable connection, made what had happened to him so much more painful for me to deal with, to understand, and to accept.

I didn’t think it was fair, back when I still believed in the concept of fair, that I should allow myself to mentally escape for one minute from what he was forever immersed in within his world. But as the months wore on after his diagnosis and we approached his second birthday, my embargo on pleasure began to wear thin. As May barreled nearer and nearer to us, I wondered how his father and I could ever enjoy the event, much less celebrate it with friends and family when I personally was still in mourning. I finally realized I’d better take a day off from grief, or I would go crazy. Jeff’s and my birthdays had passed in a blur, I couldn’t even remember how we had commemorated them, and they had just recently concluded. I reminded myself this was Justin’s day (or rather, his month, as that’s how long birthdays are experienced in our family), and he shouldn’t be gypped because his parents were still reeling.

And so, within the confines of childcare, research, and therapy I permitted myself the possibility of happiness, even if only in preparation for one day. I went a little overboard on party planning (Elmo cake, cupcakes, and party favors galore, and I would have forced Jeff to dress up as the red furry friend if a costume existed for a 6’4” Elmo.)  Slowly, over the course of a few weeks, my life expanded into quarters, with the added promise of diversion from grief and drudgery, repetition and questioning becoming a permanent staple in my repertoire.

I have read numerous essays by parents who lament their disabled childrens’ birthdays, and I understand completely what lies behind the sadness. Those days are supposed to be a celebration of milestones achieved and surpassed, joy and discovery, love recognized and rewarded. Often, at least when autism is a party guest, there is only agita, fear, and the cleaving away of the last vestiges of “normal” that every family hopes for at least one day of the year. Sometimes, despite the best preparation, these holidays are just painful reminders of what should have been, and perhaps what will never be.

I have decided however, that no matter what is transpiring in our everyday lives, whether it’s potty training issues, sleeplessness (Justin’s or mine), or simply the myriad annoyances of having an autistic child, that this one day – the day I, his father, and nine months of highly skilled ob/gyns and fertility doctors, brought him into the world – will be sacred. We will celebrate, and we will celebrate well. I now make time every spring to recall past birthdays, to note his accomplishments, to appreciate his own passage to happy. I remember how he mastered his first sign, “music”, and used it to persuade his parents to replay his favorite Wiggles tune over, and over, and over again at his second birthday fete. I recall how on his third he finally overcame his squeamishness and dove both hands into a corner of his Winnie-the-Pooh cake, gleefully freeing fistfuls of chocolate and butter cream in his triumph. In my mind’s eye I particularly revisit his fifth celebration, for as we came home from our mid-day outing he recognized the streamers and decorations as a portent of what was to come, and I realized he finally understood, at least in part, that this was a day about him.

I welcome his birthday now, as a reminder to enjoy him for who he is, not to dwell in who he could have been, and what my life would have been without autism firmly entrenched into my family’s existence. I strive constantly for more days like this, where my life is not constricted by fractions, where happiness permeates all the disparate denominators of my days.

I also know, on this birthday as in all birthdays past, when those who love him gather to make our collective wish for his well-being and extinguish the flames of seven dripping candles, my boy will reach for my hand as we sing his song to him. And that, to me, is happiness.

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20 Comments »

  1. Courtenay Adams said,

    Kim, so beautiful! I love how you write!

    Happy 7th birthday to Justin, and congratulations to you on another wonderful year as his mommy!

  2. Amy said,

    I can’t believe our sons are going to be 7! Wasn’t it just yesterday that we were huge and teaching together?

    • I know! I still contend that Tommy was the happiest baby/toddler I’ve ever met. Hope he’s still the same… Thanks for reading all of these Amy, I appreciate it!

  3. Lorie said,

    Kim – again you have blown me away with your writing. It is so beautiful and inspiring. You are such an amazing mom and I’m so fortunate to be able to be a participant in both boys’ birthday celebrations.

    I hope you and Jeff had a great anniversary dinner with lots of wine!

  4. Angie said,

    Hi Kim! First, happy birthday to Justin! Although I don’t have any autistic children in our family, we do have ADHD, so I can sympathize with you a little bit there. It’s very hard, but I’m sure what I have to deal with is nothing compared to what you have to deal with.

    Second – a 6’4″ Elmo?! I would have PAID to see that!

    Hugs,
    Angie

  5. Marcia said,

    Hope Justin has a wonderful birthday. (Ethan’s is tomorrow!) Someday I’ll have to show you the pictures of when Brad dressed up as “Redmo” for Ethan’s first birthday. (You’re not allowed to actually rent an “Elmo” costume due to copyright infringement laws….)

    And also have to tell you that this essay is gorgeous! (I read every one of them, you know…)

  6. misifusa said,

    Happy 7th birthday Justin! We got your card yesterday! Hope you get something fun!
    xo

  7. Kerri said,

    As always you find the ray of happiness in every moment. It amazes me how you can have so many things in your life that can be a real pain in the a** but you do not dwell on them. You remember to appreciate those special moments even if they are not as often as you had hoped. There should be more people like you who can look past the aggravation of everyday life and find the beauty in each day of life.

  8. Kathy Milmore said,

    I hope Justin had a happy birthday!

  9. Anita said,

    Yes, I agree, always celebrate what is and do not suffer with the what could have been! Great entry – Happy Birthday to Justin!

  10. Jennifer Haftel said,

    Whenever I feel overwhelmed or get lost in the not fairs of life I will comeback and read your posts. You are an extraordinaryily motivating woman.


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