Naked Motherhood

May 12, 2011, by Prudence Baird

As if being a mother wasn’t difficult enough; Prudence illustrates what its like to be a mother of an autistic child, navigating familial relations, good intentions and bureaucratic ignorance

The popsicle stick-thin figure in rumpled pajamas who is my 16-year-old son stands in the darkened corridor in a fighter’s stance, small white hands clenched into fists. His face, lit by a shaft of light from the laundry room, is contorted with rage at being roused from his slumber—probably by me shutting the dryer door.

Casey’s eyes dart from the lit laundry room to the clothes in my arms; then to the crack of light under his brother’s bedroom door.

This could go any direction, including ones I cannot imagine, so I float a storyline: “I’m going downstairs with these clean clothes; time to go back to bed.”

“Mom? Who are you talking to?” comes from behind my oldest son’s door.

I dart a warning glance at Casey, whose free-floating anxiety wicks towards the sound of his brother’s voice. He erupts, “Shut-up! I’m trying to sleep!”

“You shut-up. You’re the one who’s yelling,” comes big brother’s voice.

“Honey, you’re half asleep; go back to bed.” A light touch Casey’s shoulder. Mistake. A tiny fist flies—I duck; a torrent of abuse follows.

“Just shut-up!” yells older brother wrenching open his bedroom door. Then, “Mah-ahm, you don’t ever punish him; he thinks he can get away with this.”

Casey tries to scramble past me, “Fucker! I’ll kill you!” I seize a second jab in mid-air, gently guiding the wrist to Casey’s side as I hold him firmly by the elastic of his P.J. pants.

“It’s late,” I soothe, drawing closed my older son’s bedroom door. “Let’s get you a cup of warm milk.”

But there will be no soothing tonight. The door to Casey’s room slams, and for emphasis, opens and slams harder. I count with eyes closed. Finally, his bed creaks.

I pivot, open the bedroom door of my eldest son who is sprawling on his bed wearing drawstring shorts and Borat T-shirt. His laptop is open to what I hope is homework. He glances at me from under brows stitched together with almost two decades of frustration; a look too jaded for his 18 years.

My heart constricts—again. “This is autism,” I whisper. “Please. Punishing isn’t the answer.” No response. Then, “I know what I’m talking about.”

And, finally, I really do.

Autism can be a labyrinth of unspeakable horrors, where one comes face-to-face with the worst possible traits of humanity—indifference, cruelty, greed, discrimination, hopelessness and resignation. Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt. Institutions designed to help don’t. Safety nets fail, their frail ropes of good intentions frayed by bureaucratic apathy and over-extended, un-kept promises. Men often leave, unable to fix or to sustain that which sprung unexpectedly from their own loins. Mothers give all or give nothing; either way they are reviled by those outside the dark bubble which the family calls home but feels like anything but.

Autism makes no sense; there are no navigational tools or comfortable rest stops along the path families must traverse on their way towards the inevitable—when they must blindly entrust their disabled loved ones to the care of others when they themselves are spent, the marrow of their bones turned to dust, and all their loving ministrations poured out onto the dry sand of life’s injustice. In the final analysis, the only real measure of the energy expended is the significant shortening of the mother’s lifespan and the distance the other family members put between themselves and the pain that just won’t go away.

So it was for Kristen LaBrie, 38, a single, unemployed mother of a non-verbal, severely autistic and cognitively delayed son, Jeremy, who suffered from a relapse of non-Hodgkin’s lymphoma when he was seven. The mother and her son, who had survived an earlier bout of cancer therapy, made it together through four of the five phases of the second go-round of chemo before Kristen stopped administering the medicine because she felt it was making Jeremy sicker.

In Kansas City last month, Kristen was paraded through the halls of justice in handcuffs (“let that be a warning to all you bad mommies out there”), after being sentenced eight to ten years for attempted murder of her son Jeremy. The prosecution painted Kristen as an embittered woman who let her son die to get back at the world, and especially Jeremy’s father who left the destitute mother and son to fend for themselves when Jeremy was three.

In court documents, Kristen’s crime was failure to give her son life-saving medicine that an oncologist claims could have given Jeremy as much as a 90 percent chance to survive at least another five years. The thinking is that if Kristen had been a good mommy, she would have followed a complex two-year protocol that included hospital stays, regular visits to a hospital clinic to receive chemotherapy and at-home administration of several cancer medications. Never mind that the medical protocol did not include systematic support for Kristen, her son’s only caregiver for most of his life, and herself suffering from clinical depression.

Jurors justified their harsh verdict—guilty of attempted murder, guilty of child endangerment; guilty of assault and battery; guilty, guilty—by citing the devotion of motherhood in lofty tones. Editorial writers and pundits weighed in with headlines such as “Life Unfair, but Mother Dead Wrong”. Anyone with a toe in the vast sea of commerce that world of autism has become proffered themselves to the media as autism experts, hoping to use the tragedy of Kristen and Jeremy to sell their books, programs or gain market share points with a population that increases annually by more than 40,000 souls in the United States alone.

Our son Casey is one of the lucky ones, born into a comparatively stable family that is able to get him the services and enrichment he needs to thrive and grow. Sure, our Thanksgivings feel more like Picasso’s Guernica than Norman Rockwell’s Freedom from Need, but, as I put away the laundry that started the confrontation in the darkened hallway, I wonder how many children with autism will be born as Jeremy was, to unsteady circumstances and single mothers struggling to survive?

Tonight, as the mercury hovers above 50 degrees; outside the open windows the peeper frogs celebrate spring in vernal pools, their high-pitched squeals sing in new beginnings.

Tomorrow, Casey will process his midnight meltdown; he will be full of remorse, doling out hugs and asking forgiveness. He will see the world with new eyes and help those who support him have some measure of satisfaction that they had something to do with his turnaround.

But for other mothers and fathers, there are no reconciliations—only more suffering lies ahead. Who among us would willingly exchange places with them?

Autism by itself is a burden almost impossible to bear. Autism, poverty and a lingering, prolonged cancer treatment that causes both emotional and physical pain make for an exercise in despair so profound that our legal system cannot address this tragedy. Kristen should go free; her life so far has been punishment enough.

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41 Responses to “Naked Motherhood”

  1. Evonne Says:

    Wow! What a powerful and moving post! I send love and prayers to Kristen.
    She is but one of millions of mothers who are judged by a system of middle aged white men bringing down their judgments from a place of unknowing.
    Jail? come on…. I can feel the pain of her decision in my own womb. As women we all need to look out for each other. Start women’s circles, create networks of support and mostly hear each others stories, openly without judgment.
    Prue, thanks once again for opening my heart. I honor your storyteller self!

  2. rosemary Says:

    The most remarkable thing about this exquisite piece of writing is the revelation that you have managed to mine your family’s personal story to discover a treasure trove of compassion for others. There are some things so personal, there just aren’t words to express what you’re experiencing to others. You’ve found the words. I hope this post finds its way to lawmakers condemning Kristen and she is set free.

  3. Conz Says:

    Pru–thank you for your unselfish and heart wrenching writing. I felt pity for Kristin when this story broke, but deep down I also thought something was wrong with her. How could anyone withhold medicine from their cancer stricken son? I see now, because you’ve shed some light here, that the answer to that question is deeper, more painful, and so much more complicated than I could ever wrap my head around.

    We must do better.

  4. bennic Says:

    This is a very nicely balanced exploration of the lonely
    offices of parenthood.

  5. Cathy Says:

    Prudence, you’ve opened eyes and hearts with your brilliant and compassionate prose. This story is at once personal and intimate — your recounting a typical event at home and global reflecting our times, the human condition and the lack of understanding from those who don’t live with the day to day challenges of raising an autistic child, poverty or single parenthood. I’ve read this piece about three times now and each word is strong, sensitive and mind-blowing. Thank you. I hope Kristin’s sentence will be reversed. Cancer and autism suck.

  6. Carine Says:

    So easy for outside observers with no clue to come to conclusions about “proper” parenting. I’ve been following Prudence’s loving ministrations to Casey since his birth; unfortunately my nephew is autistic and I see the heart-wrenching, day-to-day decisions his family must make. My good friend’s husband came down with Alzheimer’s at an early 60. The question of whether to hand loved ones over to the care of institutions when sheer exhaustion and hopelessness sets in is an excruciating decision that can only be made by the family. Bless your heart for writing this magnificent piece, Pru. You bring it all home.

  7. dearpru Says:

    Kind words from longtime and new friends alike. Thank you. I have searched in vain for some kind of “Free Kristen LaBrie” website or movement, but methinks that mothers who are accused of killing their children, whether through neglect or deliberately, don’t have a lot of people who are willing to stand up and champion them.

    And, for those who know Casey as the maverick artist & linguist that he is (he speaks fluent Mandarin), one of the reasons he is so magnificent and able to spread his wings is that knows he is loved, supported and appreciated for the unique human being that he is. You play an important role in his life Carine & Cathy. Thank you for welcoming Casey into your hearts.

  8. Cheryl Says:

    Pru…just seeing this and of course I echo what all the above have written. The story about Kristen and her son is simply horrifying. That she is imprisoned because of her choice, which we must know was beyond grueling, is like a trip down the’Brazil’rabbit hole. Having watched too many w/o the added spin of autism, deal with cancer/chemo and knowing, in so many cases (my sister), it was fruitless…i still wonder if WE were guilty of abuse by having her go thru all that shit…the pain, the terror, the proscribed life totally determined by doctor appointments…rather than forgo treatment, have a relatively decent 6 months and say good bye vs 3+ years of torture. Your writing is profound, sensitive and illuminating. That you have navigated this journey with so much grace and unending humor is inspiring. I bow to you, girl.

  9. Tom Says:

    Thank you Pru! Life can be so unfair but it’s intolerable that uncaring people make it worse. Best to you all!

  10. tim Says:

    i am a lucky man.

  11. mellimel Says:

    Shafts of light, popsicle thin, clenched fists how is it going to go? I am always in awe of my friends with children who don’t have additional challenges (other than being little people in human bodies) but to add to that, well it is simply beyond my comprehension and ability.

    You are so eloquent and gracefully forceful I think you should be a lobbyist/advocate for programs and support for parents of autistic children. Or minimally create a clearing house website. In your spare time that is.

  12. Julie Lineberger Says:

    Pru,
    If you find a place to support Kristen, please let me know. Your essay parallels my thoughts and opinion on this issue. I KNOW I would have made the same decision ad Kristen did, even with a child who did not have autism. Quality of life is part of decision making, and the courts/physicians/others really have no business in that decision.
    Thank you for taking the time,
    Julie

  13. Julie Says:

    another WOW! Tissue please–brilliant—raw emotion–I can relate to this entire article—-and Tim–you are a damn lucky man! ;)

  14. breon Says:

    Prudence, it’d unspeakable what’s being done to Kristen–and thank you for eloquently making the case. Your descriptions of your own journey are heartbreakingly beautiful; I’m seeing Casey in the room–but of course a much younger Casey. It’s been too long. You’ve done so much for that wonderful, complicated being. What grace.

  15. Thea Swengel Says:

    Thanks for your powerful and thought provoking article. What a shame we do not have a better system. My heart breaks for Kristen and all families faced with autism!

  16. Sonja Roth Says:

    This is a project I worked on and though which I have had the fortune of friendship with the writer and director. This too is a story of naked motherhood and I just want to share.
    http://flyawaymovie.com/

  17. Sonja Roth Says:

    p.s. I stand beside Kristen. More stories need to be told and support systems need to be created. Thank you for this blog.

  18. dearpru Says:

    Sonja, I love your comments and the fact that you are expanding my world to include Mandy and her family. I will see this film…this autism epidemic must be solved. Somewhere, somebody knows what causes it; of that I am convinced.

  19. Leslie Says:

    I am overwhelmed with tears…..both sadness and gratitude.
    The smallest unhappiness from my daughter cuts my heart so deeply. Your experience must salt that wound over and over again. You have such resilience Pru, such strength….and the amazingly difficult task of having that strength tested, day in and day out. I offer the deepest admiration and respect to you. Thank you for the enlightenment you offer with this brilliant piece.

  20. dearpru Says:

    Thank you, Leslie, and everyone who has commented here. Spread the word–families raising children with disabilities need everyone’s support and compassion. And our government needs to find out the causes of the epidemic of neuro-developmental disruption and address them with strong legislation and consumer protections–even if it means shutting down major corporations.

  21. Betsy Jaffe Says:

    Prudence, What a beautiful, powerful, and amazingly vivid piece of writing. Thank you for sharing. You are a strong and compassionate woman.
    Inspired,
    Betsy

  22. Phil Dzialo Says:

    Sorry, I totally disagree with the post and most respondents. I do care for my totally disabled son (non-verbal, non-ambulatory, non-just about everything else) for the past 13 years. I have no time to bemoan the horror and difficulty of my situation. I fully embrace it because I love him. It gets more difficult because I’m 63, but so what; he’s life is more difficult than my age.
    The woman who withheld chemo to save her son’s life deserves no compassion, no empathy and no understanding. Life, in every event, is worth preserving…there are no exceptions and I am not religious nor do I believe in a god (so my thoughts are not a function of religious fanaticism). She should spend her life in jail….period. Sorry, she got burned out, but it’s not a reason or justification to “burn” your child. I have no empathy for her.

  23. dearpru Says:

    Why should you have empathy, Phil? You cannot possibly compare your situation to Kristen’s.

    You had 12 years with your son before he became brain-damaged. That is a long time to build a solid foundation, a wellspring of love, memories and affection upon which you can draw for years to come. And you have. Kudos.

    You also have a loving and supportive wife, another child to depend on, and a strong sense of community. Your communication skills and ability to seek out help and support are superb.

    Kristen had none of what you have. Her son was brain-damaged from birth. She had no memories like yours of ever communicating to her son normally, to hear his innermost thoughts and dreams. She never was able to see him play in the All Stars, as you were with yours. Please, before you claim she “burned” her child, think of how judgmental and cruel you sound, all the while standing on your sanctimonious soapbox crying out, “Well, if I can do it…” Sure you can, Phil. You have every advantage. She had none of what you have to draw on.

    You claim every life is valuable. Well, so is Kristen’s. She doesn’t deserve your harsh words or your prideful stance about your situation, which is completely different. You don’t know what you would do if you were in her shoes. You think you do, but you really don’t. None of us do, but I empathize with her.

    And P.S., not every life is worth saving. Murderers, sociopathic killers, rapists, terrorists, those who send others to war for their own gain—I would condemn these individuals long before I would condemn the mother of a child who was completely disabled and suffering from his second bout of prolonged cancer treatment.

  24. Phil Dzialo Says:

    Sorry, but I respectfully disagree. I live in Massachusetts, the same state as Kristen LaBrie. Massachusetts has a superior system of social supports for parents of disabled children which range from cash stipends, to in home care attendents, to whatever you need. Iknow that for a fact. Massachusetts gave birth to the first special needs education laws upon which the nation’s laws were modeled.
    I live in Massachusetts and followed the Massachusetts LaBrie case: if you read the judge’s sentencing report, the lack of care was “extended, calculated and secretive.” Read the entire sentencing report:
    http://www.boston.com/news/local/breaking_news/MetroPhotos04/11/Judge%20Welch%20sentencing%20memo.pdf:

    Jeremy had no voice, no advocate, no protector of his rights. It is the vulnerable who need defense and a society is defined by its protection of those who have no voice….Kristen had options, Jeremy had none. Ultimately, she could have given her “burden” over to state…Kristen LaBrie is no marytr-mother.

    Please don’t read my blog and make unwarranted assumptions about things like my community support, etc….it’s not true.

  25. dearpru Says:

    I’m not making unwarranted assumptions, Phil. You blog speaks for itself. The fact that you even have the time to write a blog speaks volumes about your inner resources, your support for the care of your child and your ability to access care in the community. If you were completely overwhelmed, your blog would not exist. If your spirit were starving and hope was only a four-letter word; if you are clinically depressed and your partner has abandoned you; if economic circumstances forced you to despair daily…you cannot picture this because Kristen’s life is foreign to you.

    Any clever prosecutor may make a case against “the bad mother.”It’s an age-old stereotype. Making a case against the bad father is much harder. O.J. got his kids back after he murdered his wife–and he’s not the only one.

    This case has overtones of prosecutorial zealousness, trial-by-media, sexism and a host of other long-held cultural beliefs about mothers, motherhood and the sacrifices mothers are supposed to make.

    And, just because a state has these supports available, doesn’t mean that a person has the means to access them. I know…on paper, California has a terrific safety net. In reality, unless you come with a $300 attorney to IEP meetings and to meetings with your state caseworker, you have to battle for paltry, inappropriate and inadequate crumbs. And the sea of bureaucratic paperwork is a nightmare…just the time to decipher what is being asked, gathering the documentation required…it takes hours you don’t have.

    Even the state makes it illegal to simply drop your child over a year old at the local hospital or fire station, as newborns can be dropped with impunity for the parents. Kristen’s former husband was a motorcycle-riding, disinterested party. Where then, was she to turn? If you yourself would not have taken her child, and vowed to be responsible for all of his manifold needs, then who would?

    On paper and after the fact, people come out of the woodwork saying they would have done this-and-that, but this is simply wishful thinking. In reality, people don’t even bother to bring a sick neighbor a meal more than once. And they congratulate themselves for days for this deed.

    I respect that you wish to condemn Kristen and say you would have done differently. However, I disagree. We cannot know what we would have done in her circumstances.

  26. chavisory Says:

    Prudence, I feel for your son Casey. I remember what it’s like to feel like I had no comfort or understanding in the world. And to not be able to get any sleep, and to feel like the last remaining possible way to make myself understood was by slamming doors. It breaks my heart that he’s struggling. I want to tell him to hang on, that things get better. I have an autism spectrum disorder, too.

    But when you write this: “Autism can be a labyrinth of unspeakable horrors, where one comes face-to-face with the worst possible traits of humanity—indifference, cruelty, greed, discrimination, hopelessness and resignation…” and almost all of the next two paragraphs, I just don’t recognize my life in this, and I think you need to be aware that the life experiences of autistic people are just as broad and diverse as the life experiences of other people. That we often have good lives which are not defined by the hardship we impose on others. Not easy, but good.

    And that language like this does not make things better for autistic people, and not for your son, either.

    It justifies employment discrimination, which in turn makes it really hard for us to find independent, affordable housing. It justifies the view that autistic people aren’t worthy or capable of love and friendship, or of having our own needs honored. It causes us shame and loneliness, and makes a lot of us wary even of seeking help or medical care or a correct diagnosis as adults because so many professionals wrongly believe that this is all autism is.

    And apparently it makes some people think it’s okay to kill your autistic child if you’re having a hard time. As demonstrated in the previous comments here, it makes a lot of people defend the killing of disabled children. It contributes to the dehumanization of autistic and severely disabled people.

    This isn’t about Kristen being a bad mommy. This is about the humanity and worth of your children.

    Of course parents and caregivers of ill and disabled children need more support; I don’t think that’s even in doubt. But I don’t care how hard Kristen had it–it’s not okay to kill your disabled child. It’s not okay to withhold lifesaving treatment for a curable condition because you’re having a hard time. Let’s be clear here–JEREMY was the ultimate victim, not his mother. Jeremy was defenseless. Jeremy had a curable condition, but his mother felt that his life wasn’t worth saving.

    Autism is HARD. If it’s hard for you, imagine what it’s like for us. It doesn’t make life not worth living. It doesn’t make our lives not worth saving. Imagine how one of us feels hearing you defend letting a child die because his condition was such a horrific burden. Because we do hear, and we do feel.

    I think about Jeremy, who could’ve had a good life. And I’ll think about Casey, too.

  27. Rachel Says:

    I know Phil Dzialo, and I know his situation. He and his wife are very isolated. Family support is nonexistent. Friends who have promised help are nowhere to be seen. A supportive community is a dream they have long since given up on. They have not had a day off from caring for their severely disabled son, who needs assistance with all of his activities of daily living, in 13 years. He and his wife are in their sixties and provide round-the-clock care for Adam. They suffered through a horrendous, years-long court battle over their child’s injury and were treated in the most inhumane and horrifying ways when they were already living with nearly unbearable levels of grief, exhaustion, and isolation.

    Kristen LaBrie had extended family; she lived with them for a time. Phil’s extended family provides no support. They don’t invite Adam to family events. They don’t come over to visit with him. They don’t provide any respite for Phil and Sharon. At all. They just promise support that never, ever comes.

    The fact that Phil can write a blog is hardly evidence that he has adequate support. For disabled people and their families, who are so often shunned by family and community, the online world is a lifeline — often the only one available to them. Phil blogs because he is isolated, and he uses the blog to connect with other parents of severely disabled children who are in similar straits; some of them are single parents who are living with extreme amounts of isolation and exhaustion while caring for children with multiple, severe disabilities. These online connections are where their support comes from; the assumption that blogging shows that they already have adequate support is entirely incorrect. People like Phil and his family are invisible to the larger society, and they are even invisible within the disability community. They are completely marginalized.

    To say that Phil’s life is not as hard as Kristen LaBrie’s life because he had 12 years with his son before the child nearly drowned betrays a complete lack of understanding of what parents like Phil deal with. People whose normal children become severely injured have to live every day with the knowledge of what might have been. It’s like losing your child to death, and yet, the child is still there, a constant reminder of what was. Have you ever seen the agony of a child who has been through an anoxic brain injury? Phil and his wife have, and they’ve been living with PTSD every day for 13 years. Their son is now 25 and cannot dress himself, use the toilet, speak, feed himself, scratch an itch, point to something that hurts, or power his own wheelchair. Jeremy Fraser might have grown up to be able to express his thoughts and feelings via text; more and more nonverbal autistic people do. For Adam, that is not even a possibility.

    If you feel that your personal experience with autism (which is by no means universal) gives you the knowledge to say that you understand and empathize with Kristen LaBrie, then Phil has the same right to say that his experience of caring for a severely disabled son in the absence of support gives him the knowledge to arrive at a completely different conclusion. You may disagree with his assessment, and I respect your right to do that, but please do not do so with recourse to assumptions about what Phil’s life is like and what he’s been through. He’s a highly ethical person who has been through hell, and he comes by his opinions intelligently and fairly.

  28. dearpru Says:

    chavisory, when I write these words that autism shows you the worst side of humanity, I’m not saying that the autistic child or adult is the worst side of humanity.

    Rather, it is the self-righteous idiots who think that the miniscule amount of support given to families dealing with disability is enough. It is not.

    Most people think that school districts, insurance companies, state agencies, churches, friends and relatives are rising to the occasion. They are not.

    Thanks to the bellicose priorities of our government, paying for wars in oil-soaked countries is more important than giving families support here at home.

    School districts budgets are cut to the bone and so are services. State agencies have made it almost impossible to get respite aid or support of any kind. Insurance companies fight any and every attempt to pay for services. (It took me four letters and 50 pages of documentation from Casey’s doctor to get six speech and language sessions. Six.)
    And then, insurance only paid what was “reasonable,” which turned out to be one-sixth of what the going rate was.)

    It is the Republican governors who cut aid to the disabled while refusing to raise taxes on the super-wealthy that shows the worst side of humanity. It is U.S. Senators who pretend that billionaires who own two, three, four or more houses, private jets, offshore accounts need billions in tax breaks in order to create jobs for us po’ folks. These politicians are the worst side of humanity.

    It is the bureaucrats who sit in IEP meetings and refuse to give the single mother any kind of services that make her life easier; it is the state agencies that put families in need on waiting lists, that downgrade the list of qualifiers that help get needy families the intervention they need…these are the worst side of humanity.

    Nobody (I hope) is defending killing disabled children. Really, that is a ridiculous interpretation of this blog.

    As for Jeremy’s quality of life, I don’t know. He was in his second bout of cancer in his short lifetime. The one thing that all cancer experts agree on is this–cancer will come back, especially in the immuno-compromised body. Jeremy was horribly ill every time his chemo was administered. You write that he could have had a good life. What makes you so sure? Were you there, holding his hand when he vomited? When he refused to open his mouth for medication? Do we know what it was like to feed the child poison in order to kill the cancer? To say that his quality of life was good is a huge jump in reasoning. I think we can only ask the mother as she was the only one there. You certainly weren’t there. I wasn’t there.

    We don’t know Kristen’s motivation other than what she’s told us…and she says that she couldn’t bear to see him suffer. Other than that, it is only the prosecution that says otherwise. And you. And Phil. And the media band-wagon.
    I reserve judgment on the poor woman. Jeremy is dead. His father is dead. His mother is in prison. The rest of us are shaking our heads. I refuse to sit in judgment of her other than to say that everyone suffered. To continue this suffering accomplishes nothing and any message that the judge is hoping to send will fall on deaf ears as parents who are at the end of their ropes are too busy to even think past their immediate crisis.

  29. dearpru Says:

    Rachel, I think that the fact that Phil has you defending him and going into great detail about his circumstances says it all. This kind of intimate knowledge and compassion for Phil and his family IS support.

    Again, you make assumptions about Kristen’s family’s support. Were you there? How do you know that they didn’t resent her (and Jeremy)? We don’t know. I am not globalizing my experience to all families raising disabled kids. Every disability, every situation is different.

    Phil is fortunate in that he did have 12 years with his son before disability struck. In speaking to others who care for suddenly ill family members–ALS, MS, Alzheimer’s–I know this to be true-the memories of the better times sustain the caregiver when all seems hopeless. So, I stand by my statement that Phil is fortunate that he can look back on those days and draw upon them. Anyone who sees a loved one deteriorate will find him/herself looking at old photos, watching videos and remembering the better times. This is human nature. And it helps us through the night.

  30. dearpru Says:

    This blog is a snippet of a midnight encounter in a darkened hallway outside my two sons’ bedrooms. In many ways, it is a snapshot and is not a general commentary on autism. It is a look at the disability from the perspective of the main caregiver (me) and my empathy for the disabled son’s brother, who has suffered in myriad ways due to having a sibling with autism. I know in my heart that as my eldest son grows and ages, he will look back on his childhood more favorably and realize that having his brother in his life gives him a deeper and richer life’s experience. But he is a young man now who has all the focus of a typical young man–in other words, he sees the world through his eyes; how experiences impact him. Empathy, sympathy are earned with age and do not occur naturally in most young people; these qualities mature as we do.

    This blog is not an indictment of my son with autism or of autism itself. It is a passionate discourse on the pain that so many mothers are afraid to voice. I am not afraid to voice it and to question the kind of support one such mother, Kristen LaBrie had–or more importantly didn’t have–that drove her to be silent and make such decisions as she did. Maybe if she felt she voiced her helplessness and pain she would be judged harshly. In the end, she was judged more harshly than she knew possible.

  31. chavisory Says:

    Prudence, I appreciate your response and your frustration with the system, schools, insurance and government, which I fully agree can complicate problems as much or more than they help. But that’s not the impression your phrasing gave in the article, which very much sounded directed at what autistic children do to their families.

    When you write things like “She had no memories like yours of ever communicating to her son normally, to hear his innermost thoughts and dreams. She never was able to see him play in the All Stars, as you were with yours,” well, my parents didn’t have any of those things either. They had other things…I was a quirky, smart, difficult child. We had a lot; I’m very lucky in many ways–I’ve never been profoundly, permanently disabled like Phil’s son is. But no, my parents never got normal communication with me or any of my innermost thoughts and dreams, and yet I like to think that they’d still have saved my life if I had childhood cancer. I say this knowing something, admittedly not first-hand, of what cancer treatment does–my mother is a pediatric nurse who works with young leukemia patients daily. An old friend

    I don’t say that Jeremy’s life wasn’t painful and hard–obviously it was. But he could’ve grown up. Except that his mother withheld treatment for a curable condition because she was overwhelmed. No, I know nothing of what life would’ve held in store for him. No one knows that about anyone, even about a child born un-afflicted with anything into a stable, loving, affluent family. And now he doesn’t get to find out.

    I utterly agree that parents of severely disabled children need and deserve more support. But the supposed reasons given here to condone what Kristen did still blow my mind.

  32. dearpru Says:

    chavisory, clearly your mind is made up about this situation. Far be it that I should introduce to the discussion that all-American concept of “reasonable doubt,” which is, by the way, not the same as condoning the withholding of chemo.
    p

  33. Phil Dzialo Says:

    Ms. Baird,

    Well, back again…I want this to be simple so my issues that I present can’t be deflected. Facts and Assumptions!

    FACTS:
    +”In Kansas City,Kristen LaBrie was…”. Actually the fact is that it was Lawrence, Massachusetts.
    +”Suffered from a relapse of non-Hodgkin’s lymphoma”. Actually, he was in remission and after 5 months of being denied his chemo at home, the disease morphed into a virulent leukemia, treatable (minimally) by a bone marrow transplant.”
    +”The medical protocol did not provide the support….” Actually, Judge Welch, in his sentencing support specifically noted: “…the hospital, her family, and the Commonwealth provided emotional,social worker,nursing, and financial assistance…”
    +My opinion (restating my belief) is that society needs to protect it’s most vulnerable and that parents do not have a right to attempt to murder their children. It’s simply a fact that this is MY opinion, as it is a fact that you’re opinion is that she should be freed. As Judge Welch said, in his opening statement while quoting GK Chesterton, “the young demand justice; the rest of us beg for mercy.”

    ASSUMPTIONS:
    +Ms. Baird assumes that because my son became disabled at 12 and that he cannot speak or move a muscle for the past 13 years, somehow invalidates my opinions on this case. I would be entitled to an opinion only if I had the experience of a disabled kid from birth. No parent of a disabled kid I know would make that assumption, except here. My friend, trauma is trauma whether it’s at birth or 12 years old. It is a sheer assumption that I look back the first tweleve years…it’s a total fog.
    +Ms. Baird assumes that because I blog, semi-literately (my interjection), I have a support system unlike LaBrie. I blog to maintain my sanity of 24/7 care for 13 years for a non-verbal, spastic quad son. LaBrie (and its documented,) drank to the point of no being able to take care of her kid. We all have our particular coping strategies. Mine does not invalidate my opinion.
    +Ms. Baird assumes I have a great and vast support system because Rachel wrote a comment explaining the situation in which I find myself. Well, I have never, ever met Rachel and she knows me only through my blog…the same place you got your information and made assumptions about me.
    +Following your logic, you, Ms. Baird, also blog…does that invalidate your opinion that LaBrie should be free? I think not.

    It is important that judgments about matters be based on fact, and that assumptions about people’s ability to have sincere opinions be avoided. Thank you for listening.

  34. dearpru Says:

    Go and live in peace, Phil. I don’t want to argue with you anymore. Your hands are full and you need what energy you have to care for your family, as I do for mine.

    This entire discussion has gotten out of hand and ridiculous. So much so that you are addressing me as Ms. Baird. Really, Phil. We are both parents raising children who are disabled.

    Go now and enjoy your life, your family and your son,
    PB

  35. Phil Dzialo Says:

    Thanks of the dismissal…Pru

  36. Sally Rubin Says:

    Wow! What a read. And thank you thank you for pointing out the cottage industry that autism has become. I recently sent in a remark to the new Autism Science Magazine that I didn’t think it sent the right message to have a sultry shoulder-bearing image of Jenny McCarthy on the cover of the premier issue, if they wanted to be taken seriously. (How about a mother-son shot? …something that spoke to motherhood.) The response: “It was the only picture she sent us. We put some copy over the shoulder.” All I have to say is gag me with a spoon.

  37. dearpru Says:

    So true, Sally! The whole Gen Rescue convention I went to in L.A. a few years ago seemed to be a bit like a sales-slash-empowerment meeting for budding vendors to the ASD world. I went home laden with all kinds of swag…and have been hounded by sales pitches ever since. Suddenly, everyone whose life has been touched by ASD is an “expert,” when, in reality, it’s a bit more complicated than that.

  38. False Blame : Embracing Chaos Says:

    [...] This post is in response to Rachel’s recent post at Journeys With Autism about taking care when expressing our experiences of disability. Her post was, in turn, a response to another blogger. [...]

  39. dearpru Says:

    While I’m happy to see that this post is still garnering comments, I’m wondering if any of the critics jumping on the bandwagon even understand that this blog is about Kristen LaBrie, her tremendous isolation and hopelessness that led her to decide as she did.

    It’s also about how an incident in the wee hours of the night resonated with her experience. This empathy and glimpse into my life–and the lives of so many families struggling with raising DD kids– seems to have opened the floodgates of indignation from all manner of individuals who believe they see themselves or “their kind” here.

    Anyone who wants to throw stones needs to take a chill pill, preferably sooner than later, and stop thinking this blog is about them. People are not so different from each other and those who go through life feeling they carry some kind of stigma because they are outside the mainstream need to realize that this is what makes them special, what moves our civilization forward (or backward) and that their abilities and gifts can make a tremendous difference in their own lives and the lives of others.

    But the fact that remains is this: raising a DD child has an impact on a family that can be measured in not very flattering terms–it costs far more to raise a child with disabilities, mothers don’t live as long who raise children with disabilities, government spending is more for these families and, yes, there are significant repercussions in both the parenting partnership relationships, with siblings and other family members. These are facts. These are stubborn, measurable things that cannot go away.

    What is more difficult to quantify is the insight, the gifts, the sensitivity, the compassion, the patience and the overall beneficial impact on families and society as a whole that comes from raising a DD child or a child who is different. I have discussed these intangibles at length and conveyed the poignancy and positivity of this experience in other writings, none of which has been mentioned by any critics here. And my main critic, she-who-shall-not-be-named, says point blank that she won’t “allow” my other writings to be shared or considered–presumably because they would undermine her need to see this issue as black-and-white and herself as the crusader against all enemies of the ASD realm.

    All voices must be heard. Those impacted by ASD have the right to speak their minds and hearts without fearing that the Barney Fifes of political correctness will descend on them and make them pariahs in their own communities and in the communities in which they work and serve. This is not about civil rights; this is about telling the very human stories that are the warp and woof of mankind’s history on this planet.

  40. Phil Dzialo Says:

    Pru
    If it is true that “all voices must be heard”; why did you blithely dismiss me to take go and take care of my son? Why did you dismiss my opinions on the LaBrie case and contrast my situation with hers in an attempt to invalidate my opinions? Why have you not addressed any of the factual errors in your blog about Labrie that I put forth? Just wonderin’

  41. dearpru Says:

    Hi again, Phil,
    You have a great deal to say and a great deal of time, apparently, to split hairs. Every moment I engage in this exercise by reading your (mostly hostile) words or trying to (uselessly) find common ground, is a moment away from my family, my work and my passions. I am trying to do you a favor here…if you want to keep parsing this matter until the cows come home, be my guest and devote all your free time to rehashing Kristen LaBrie’s case. I’m done.
    Enjoy,
    P
    PS But on another note, I did read your blog with a great deal of interest and compassion. I went through something similar with my own child…what should have been a routine situation went south due to the irresponsibility and unprofessionalism of those I trusted the most. And the rest, as they say, is history. So, you & I have more in common than not, but you probably would disagree, just to keep things consistent.

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