October 23, 2011
It seems we’ve come to a place in our society where moms require labels to distinguish what kind of parenting we practice. Several years ago I read an article describing how Jenny McCarthy aptly coined the phrase “warrior moms”, a term dedicated to those of us fiercely advocating and fighting for our children with autism. This past year in Time Magazine the zeitgeist shifted to “tiger moms”, an appellation I grasp intellectually, but continue to reject solely on my belief that childhood should include choices, and at times actually be fun. Then last night, as I briefly skimmed through the daily Autism Speaks blog, I chanced upon a reference to a New York Times opinion piece called “Notes from a Dragon Mom”. Without reading the blurb I rolled my eyes and clicked on the link, ready to be regaled with yet another story of a superhuman mother which would surely leave me feeling vaguely guilty for all the things, despite my efforts, I somehow manage not to accomplish for my progeny.
Ten minutes and half a box of Kleenex later, I sent a silent plea to the universe to forgive me for that eye roll.
The piece, by author Emily Napp, describes in exquisite, precise prose how her eighteen-month-old son Ronan, a beautiful little boy with red hair kissed by fire, will not live to see his third birthday. I won’t give you the details here, because Ms. Napp does so brilliantly, with an elegant grace I cannot and should not attempt to reprise. I promise you however, this article is worth your time, and will perhaps alter your perspective on parenting irrevocably.
I know it did for me.
For years after both of my boys were deemed autistic, I was mostly immersed in the physicality of their diagnoses. My husband and I were completely caught up in dealing with sleepless nights, relentless rounds of diarrhea, eating aversions, and with my eldest, the feint and par of aggression. There wasn’t much time to consider the future, as the two of us at times were literally simply trying to make it through the hour. Quite frankly there was a safety to living in the moment, no matter how terrible it was. Having been a veteran educator myself I’d had access to several autistic students over the years, and had been privileged to know and follow their families over time. I had an extremely clear big picture view of what might transpire for my boys down the road, and the prospects were terrifying. I simply shelved those thoughts for the years immediately following what I like to call their “D Days”, and forced myself to focus on the now.
I believe making that shift saved my sanity.
There were times however, particularly during Justin’s pre-school years, that as our daily struggles lessoned, the weight of that possible future would insidiously slip its way back into my head, at times leaving me semi-paralyzed with fear. I realized ironically that as Justin’s challenging behavior lessoned, I would have to ramp up my own self-discipline, try to conquer my own fears, and stop living in my head. I’ve mentioned before in my blog that one of the most helpful tools I used to do so was Susan Senator’s book Making Peace with Autism. Her writing, despite our child’s moderate autism, afforded me both a blueprint for one day achieving a happy family, as well as a second important mental shift.
I clearly remember one fall morning in Barnes and Noble, snatching up this book from amongst a myriad of tomes that outlined the full recovery of the author’s child, and finding immediate comfort from the words within the cover. The solace came not from discovering a family who made every decision regarding their child’s care with consummate perfection. It came from reading about a family who learned to self-correct their errors, who made enough of the right choices despite their son’s severe autism to forge a path which would ultimately make possible what I consider the perfect endgame- a safe place to live, a social outlet, a job, and a happy life.
This remains my intended endgame for Justin as well.
Life continues to improve in our home, with my eldest making great strides in reading, communicating his needs, and finally being able to summon that peaceful child I knew existed, and worked so diligently to unearth, during all the dark years. Despite my second’s son’s identical diagnosis, Zachary’s life trajectory remains quite different than Justin’s, most likely including the more traditional fare of relationships, college, career, and independent living. Over time I’ve been able to reconcile the fact that Justin won’t have these options, mostly because he’s achieved the most important goal I’ve always had for both of my kids.
Both Justin and Zach love their lives.
As we’ve reached this point together as a family I’ve realized I won’t ever completely be at peace with the paths autism has altered for us, but the truth is I am completely at peace with that realization. There is one fear however that has lingered for me, the one that requires a serious “aha” moment, or one last emotional transition. I have yet to figure out how to deal with those decades I won’t be around to protect my boy, although if it were possible from beyond the grave, I surely would. Part of my problem is projection, or the very real fear of all that can go wrong when I’m gone.
Every year since Justin’s diagnosis I’ve come across a heartbreaking story of an adult with autism’s neglect, injury, or untimely death. These stories simply exacerbate my deepest fears, heighten the atmosphere of “what happened now”, in which my family dwelled for so long. The possibility of someone hurting the someday adult who will always remain my baby clouded the future, prevented me from seeing an alternative route. Yet the truth is, Justin may live safely for the forty years he’ll spend on earth without me. He may in fact acquire that job that suits him perfectly, enjoy authentic social opportunities, truly revel in his life. There’s every chance he may be just fine. The reality is, he’s lucky to have a future.
And last night, in devastating detail, Ms. Napp reminded me of that simple truth.
I admit, I feel somewhat guilty gleaning clarity from this piece, seeing how this author must surely dwell, despite the sweetness of living in the now, within the confines of constant, unremitting pain. Her words certainly have not completely eradicated my deepest worries concerning Justin’s existence post-parent, but they’ve given me a different way of contemplating the arc of his life. For that gift, I am eternally grateful.
I am confident I will never have the honor of meeting Ms. Napp to physically thank her for sharing her story. The most I can do is share the piece here. As the author states near the conclusion of the article, the truth for all of us raising the next generation is that “none of it is forever”. I thank Ms. Napp for altering my perspective. And I know, as I hug my boys who have already lived longer than her son probably ever will, I won’t forget this truth any time soon.
July 25, 2011
Why reinvent the wheel? That’s a question I posed to myself too many times to count when I was teaching, and one that’s resurfaced often as I’ve been raising my children. Apparently, a woman named Sharon Esch thought so as well while she was struggling to create a “super-team” to help her son Adam, who had been recently diagnosed with autism. In an effort to streamline the odious process of procuring that occupational therapist who “gets it”, or the psychiatrist actually willing to listen to parental concerns, she went ahead and created a web site to assist parents in creating their own “dream teams” for their autistic progeny. The site, myautismteam, is free, and has been launched in partnership with Autism Speaks. It is available to all autism parents and providers in the United States.
It appears to be the “Craig’s List” of autism, and it is a damn fine idea.
Perhaps it’s just me, but with the vast array of social media available to us now, at times I feel a wee bit overwhelmed by all the “great new ideas” available to us these days. Since there are times I honestly find it difficult to recall my children’s names, I also find it somewhat difficult to remember some of the suggestions that come my way, either ones from well-meaning friends, or ones broadcast to me over the internet. Lately, the only ones I’ve managed to recall for more than thirty seconds have been in the entertainment industry. There is that brilliant soul, Adam Mansbach, who wrote the Go the F*** to Sleep Book (a statement I admit to muttering under my breath frequently over the years, leaving me in greater despair that I didn’t think of turning it into a literary experience), and the equally Eugene Pack and Dayle Reyfel, who came up the idea for Celebrity Autobiography, a play in which celebrities read other celebrities’ diaries.
Truly, some people just suck up all the available genius in the world.
But I have to say as I read today’s Autism Speaks Blog that their featured article will stay in my mind even without writing it down on the sticky notes that seem to proliferate throughout my home, and horrify my husband with their random, and to him, indecipherable themes (“no underpants”, which was a reference to needing to replenish my youngest son’s diaper bag, readily comes to mind). Access to this site enables a parent to discover other parents in close proximity, read their stories, and locate the providers they use and recommend. It also permits parents to do searches on a directory of over 30,000 autism providers across our nation. Among other wonderful features, it even allows moms and dads to make their own personal recommendations of providers and autism-friendly businesses to the directory, so they can spread the wealth of finding that perfect professional who simply fits their child’s needs. The entire premise behind the site is that “it should be easy for parents of children with autism to find the best providers around to help them”.
And really, isn’t it about time that something related to autism was easy?
This site I’ve actually bookmarked (yes, I still remember how to do that even with “summer brain”). I’ve even tested it out a few times, and was happy to see a few of the providers we use actually come up as suggested professionals. I may even get brave and try to recommend a few of my own.
That will probably require at least two sticky notes to remind me to do it.
Anyway, here is the site again (myautismteam), and I hope you find it helpful. Frankly, I don’t think the efficacy of this site is limited to those of us with offspring on the autism spectrum either, which makes it a boon for all of us with differently-abled children, or even some whose children are just struggling, and need a little help.
It’s usefulness will be widespread, and I believe it will truly assist our community, one in which time, and resources, are particularly precious.
April 14, 2011
I recently subscribed to the official Autism Speaks Blog, which along with the Schafer Autism Report is where I usually turn to for any recent developments in the world of autism. I’m happy to say that the tide seems to be turning in the past year, with more and more positive articles being showcased by both publications, but I read one last week in the AS blog that stopped me cold. According to the article, a mother in Massachusetts apparently withheld cancer treatments from her severely autistic son, and he died. Now a jury of her peers has to ascertain her motivation for the purposes of sentencing severity, has to discern what was truly in her heart as she enacted this deprivation.
I agree with Margery Eagan, who wrote about the trial in her column in the BostonHerald.com. I’d hate to be in their place too.
Clearly, her son had the right to continued medication for the leukemia that reared its ugly head after a remission from his non-Hodgkins lymphoma, leukemia being a cancer with an 85-90% recovery rate, that according to the boy’s doctor was being successfully treated. His mother was not a medical professional after all, was legally charged with his care. This boy had a right to his life, however long or short it was meant to be. He was, literally, at his mother’s mercy.
I’ve never met Kristen LaBrie. I have no idea whether what she declared on the stand is true, that she was simply so afraid at how sick he was after taking the medications, terrified that if he fell further ill from the treatments she had to pry open his mouth to give him, that he would die. I will never know if the prosecutor’s spin is more apt, portraying a woman riddled by resentment at the small role her ex-husband played in raising their son, a boy reportedly consumed by allergies and severe autism years before cancer completed the ailment trifecta. I will never be certain, as with some cases that come before a court of law, if infused within the truth, in this circumstance, are varying shades of gray.
After I had read a few related articles to this story I tried to envision what the last few years had been like for this woman, regardless of her true motivations. The articles stated she was broke, and for the most part the sole care-giver in this child’s life. I tried to imagine my existence as hers, and I just couldn’t fathom it. I removed my educated, loving husband from the picture. I evaporated the security of salary, the knowledge we can provide for our sons’ needs on a daily basis. I destroyed the sanctity of sleep, because one of the side effects of the chemotherapy medications was her son’s insomnia, which of course, meant hers as well. I stripped away all pretense of any pleasure, and replaced it with the agony of watching her son suffer on every level possible, both physically, and with certitude, emotionally, for years. I literally cannot envision how one endures that much pain.
But her son couldn’t speak for himself. She was his mother. No matter what, she had a moral imperative to treat him.
There is one other absolute truth here that arises from this story of which I am certain, particularly during Autism Awareness Month. I am so grateful for the increase in articles regarding the housing situation for adults on the spectrum, and the coverage of the ever-growing number of states jumping on the insurance bandwagon to offer families some financial relief. I am thrilled that more and more school districts’ programs are being lauded in the press for their efforts, and that increased attention is being paid by pediatricians nationally to earlier diagnosis and treatment. Reading about documentaries highlighting the triumphs and challenges of two articulate adults on the spectrum makes me happy, as does an international campaign to “light it up blue”. To me, it all signifies progress, is a continued celebration of collective triumphs.
But I also believe it’s crucial to be aware of what’s happening to those around us, those individuals comprising our daily world who are struggling with the all-pervasive ramifications of this disorder, one that can often overtake our lives. It is crucial we are aware of how that neighbor is faring, how that nice mom in the special education PTA who looks so stressed is doing, why that father of the child in our son’s class looks so sad at the spring fling. We need to keep our ears, eyes and hearts open to what I consider our extended family, and offer a hand whenever possible. Mitigating the hardship of one family’s existence is just as important as lighting a talk show stage blue, writing a book that conveys comfort to thousands, or creating legislature that eases that backbreaking load families often carry for decades. And yes, we continue to require autism awareness on a worldwide scope.
But in order to prevent the recurrence of a tragedy like the death of Jeremy Fraser, I believe we require it just as much at home too.