April 14, 2011

Eyes Open

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , , , at 10:59 am by autismmommytherapist

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.

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7 Comments »

  1. Mom said,

    Couldn’t agree more–well said!

  2. Cathy Ballou Mealey said,

    I am a Massachusetts resident, so I have been exposed to various details of this case through the media for quite some time. I feel compelled to add that I do not believe this mother had the best of legal representation. This story is nothing but tragic all the way around.

    • It is completely horrifying, I agree. I never saw any references to her legal representation, would be interested in that.

  3. misifusa said,

    Such a sad, sad story. Thank you for sharing it.

  4. Anonymous said,

    I did know Ms. Labrie personaly many years ago. I can only attest to what she was like then. A bully. This is what bullies grow to be like if they are not corrected.


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