August 25, 2010


Posted in My Take on Autism tagged , , , at 6:31 am by autismmommytherapist

Some people employ their green thumbs in their gardens, immersed in a hobby for which I have apparently zero aptitude if one counts the corpses of half-neglected plants strewn around my home. Some people Facebook (when did that become a verb?), because evidently it has become imperative in our society to share every thought we have the second we have it (and yes, I’m on it). Some play golf, an activity I used to excel at as long as there was a windmill involved, and the opportunity for a free game and the potential for ice cream at the conclusion of the course. Over the years I’ve finally given up on all of these endeavors, in part due to time constraints, and in part because I have collectively sucked at all of them.

So now, in order to appease my “hobby need”, I scrapbook. I know, it’s such a sexy pastime. My husband is a fortunate man.

I’ve received some abuse for the scrapbooking over the years, mostly from people who’ve indicated I should at least have had my AARP card prior to starting down the road of laying down permanent memories. I’ve taken the ribbing with grace, and continued to annoy the hell out of my husband three or four times a year when I desecrate the dining room table with my papers, photos, sticky pads, and stamp dies (admit it, you’re impressed with my knowledge of the lingo). If I had to give myself a grade I’d say I’ve earned a B- overall (I tend to replicate the same layout repeatedly, as much due to laziness as a lack of creativity), but an A for effort. I enjoy this activity once I get into it, although every evening there is a bit of an internal struggle for me to forego the seductive appeal of my flatscreen and multiple opportunities to watch old Law and Order episodes.

Despite the allure of television I will continue to make permanent memories, in part because when I look at my photo albums now I often find myself peeling back the translucent covering in an attempt to remember why I felt it imperative I snap this moment in the first place. The nice thing about scrapbooking is you’re supposed to accompany your photo with a caption indicating why it was worth immortalizing at all, a verbal snapshot that in itself helps jog the medulla oblongata. My memory was on shaky ground with the first child, and sadly was permanently incapacitated after the birth of the second. This hobby affords me the opportunity to at least pretend I remembered what transpired on my oldest child’s third birthday, and that chance alone makes scrapbooking a worthwhile endeavor.

And then, of course, there’s its legacy for Justin.

There are many days when I won’t say I’m at peace with both of my children having autism, but I will say I have fully accepted the situation. We’ve achieved a certain tenuous calm, my sons and me, one in which I’d have to say while there are plenty of annoying situations that arise on a daily basis, the vast majority of the time we are happy. It is a hard-won position we hold, and one in which I am extremely proud. We’ve come through fire together, and somewhere along the way I’ve learned to integrate our daily struggles into the fabric of a family, acquired the necessary skills to shake off my forebodings for the future and attempt to live in the moment. At the very least, I try.

Most of the time I succeed, except when it comes to contemplating Justin’s lifetime care.

In Joan Dideon’s lyrical memoir “The Year of Magical Thinking” she writes about the death of her mother-in-law, some of whose last words to her children included “I can’t die- who will take care of you?”  Her offspring were in their sixties when these  words were uttered, fully capable individuals, parents of grown children themselves. Even on her deathbed, caught between the concrete world of the living and the ethereal world of the dead, she must have known they’d ultimately thrive without her presence, yet couldn’t quite conceive that this was possible without her.

I empathize.

It is so painful to me to envision my son, who will most certainly need constant supervision until the day his gracious heart stops beating, as an entity in this world alone, perhaps even for as long as I have already graced this earth. It is potentially the one concept I cannot reconcile with my need for acceptance, my desire to incorporate all aspects of his disability into the framework of our family’s life so that we can move on, enjoy one another as much as possible. On certain days I’ve envisioned a sort of autistic “Chavurah” as his fate. It is a lovely concept in the Jewish religion where a cohort, a family of sorts, is created, one in which they celebrate life’s triumphs together, and support one another through life’s inevitable sorrows. In my particular construct myself and other women of my generation comfort and check on the generation of children born before ours, the now motherless, the disenfranchised, the ones whose families are no longer there to protect them. In my fantasy world this turns into a “pay-it-forward” type of situation, in which the generation of mothers after me will later care for my own son in his group home when I am no longer able to play that role.

I can dream.

Ultimately I am a reality-based girl, and I am aware that creating a collective of women who will look after my son following my death is simply a wee bit unrealistic. Besides, bossy as I am, even I cannot wield that much influence beyond the grave.

So, I scrapbook.

I permit myself to imagine his imminent lodgings at times, mostly in an attempt to familiarize myself with the future so that it won’t seem quite so foreign when it ultimately arrives. In my imagination his room is strewn with photos, upright on mantles, bureaus, and desk. Smiling portraits adorn the walls, some of the celebrations long since concluded, some of simple, random moments which often end up being of equal importance. On his bookshelf, in a place of prominence, the diaries I have kept of his development and achievements will reside, nestled firmly next to the baby book in which I have yet to pen his first word. In my mind’s eye, he will be surrounded by proof of affection, a permanent record of commitment, of pride, of love.

The scrapbooks, however, will be what I hope will seal the deal. He enjoys perusing their contents now, and I often wonder how much he recalls of the recorded festivities on their colorful backgrounds, accompanied by stickers and buttons designed to enhance the page’s theme. I hope they will be a comfort to him down the road, but what I hope for most is that they will be viewed by individuals other than my son, that his caretakers will take the time to mark the passage of the middle-aged man before them, to acknowledge that he was once a teen-ager, a child, an infant. That he had, to some extent, a normal childhood. That he was adored by his family. That he was loved. That he is, indeed, a whole person.

And so, I scrapbook.