Into the Woods Living Deliberately

just notes from jennyalice

Jennifer Byde Myers

Jennifer Byde Myers
Location
SF Bay Area, California, US
Birthday
February 03
Bio
Jennifer Byde Myers is a writer, editor and parent of a child with autism. She has been writing since 2003 at www.jennyalice.com, chronicling her family’s journey from diagnosis to daily living with her son’s special needs. She is a founder and editor of The Thinking Person’s Guide to Autism. Her writing has been featured at Salon.com, Dandelion, Care.com and in several books including My Baby Rides the Short Bus. Jennifer has been interviewed on NPR, most recently on Forum with Michael Krasny, and is a Parenting.com Must-Read Mom. She lives on the San Francisco peninsula with her supportive husband, two wily children and a dog named Gus. Follow her on Twitter at @jennyalice

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MARCH 12, 2012 6:30AM

Tragedy, Sympathy and Empathy

Rate: 10 Flag

My heart is racing, and it makes me unable to breathe. Tears swell up when I try to talk about it. It is a tragic story that has our entire community reeling.

A student from my son's school was killed by his mother. Then she took her own life.

The articles keep indicating that she was overtired, had too much responsibility, and a lack of services keeps coming up. As one writer put it, she was "her child's nurse, his advocate, his playmate, his cook, his personal hygiene assistant, and his communicator. [She] was the mother of an autistic adult child. And she was her son's entire world, meeting his every need from the moment he was born. And she was desperately fearful for his future and exhausted beyond belief."

but she murdered her child, and that's the story. 

If we let this story focus on the hardships of this woman, we are lost. The young man was killed, and it undermines that significance when we read in another article that one could understand what "would drive a parent of an autistic child to commit such a senseless act." Anyone who says they "understand" is reinforcing the idea that my son, and other people like him, are less valuable. It may be unintentional, but that sympathy starts to sound a lot like taking his life is somehow "understandable," because things were hard and the young man required a lot of help. 

Yes, we need better services, but we have always needed better services. Yes, we need support for parents who are life-long caretakers, and better adult programs for that magic age when children become adults overnight. We need infrastructure and life-skills support for adults with autism. There was a program available for this family, but there really are not a lot of options when kids "age-out" of the education system. But these are all separate issues. These are the things we are working for. That's what we advocate for. And as for worry, there is not a single parent I know in this community that is not concerned about their child's future. Exhaustion, frustration, fear...

It is not a list of reasons why taking your child's life is justified.

A pile of pity on this mother is not going to bring about more services. Are you outraged? Then vote people into office that believe the special needs community has a fundamental right to supports. That might get more services. Talk to your neighbors about shared responsibility and humanity and dispel the myth that we are leeches trying to live off the system. Those things might help get services for people like my son and the young man who was killed.

And I do not believe absolution will encourage people to support me, or my son, or adults with autism. In fact it further ostracizes us; it makes us "other." As a mother of a child with autism I walk under a cloud of suspicion now. Will I snap?  I'll have more people looking and feeling sorry for me as if I have an anchor around my neck--and how will that make my son feel? Most people would never stop to think that showing so much sympathy, not for the victim, but for the person who killed him, might make adults with autism, who may rely on a network of caregivers, feel threatened, and more vulnerable, like there is no one they can trust.

When it is even intimated that this killing was done out of mercy, it changes the value of my son's life. It says that his life is less worth living, but let me be clear there is no sliding scale on my son.

Maybe it's empathy that's needed. Empathy takes more time than sympathy, but if you are able to imagine life as my son then it would be impossible to disregard him. Looking at life through his eyes would give you a sense of what his needs are, and of course what services must be provided, but more importantly you would be able to see the relationships he has. You would see the snarky jokes he's in on and how much he loves his family. You would see that he has intent and tries constantly to communicate what he is thinking. You would see him as a person, instead of "person who needs to be taken care of." Maybe it would change things, but most of the time people just use the narrow scope of their own expectations and desires to determine the value of someone elses's life; most people are unable to separate their opinion from the other person's reality.

And yes, Jack's life is challenging a lot of the time. But no one gets to say that he is less valuable because his life is hard, or because his life is not what someone else expected. He needs help with almost every aspect of his life, and will continue to need a lot of help, but he doesn't need pity, or mercy and if you think he does, why don't you ask him? I'm sure he'd rather have you talk with him than about him.

There are no excuses.

and we have so much more work to do.

for more perspectives, please see these posts:


The opinions on this blog are my own, and in no way represent the many groups, foundations and communities with whom my name may be associated.

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Comments

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Thank you for your comments.
I agree with you. Completely. There are no excuses.
Thank you Liane. This is a very tragic story.
When did we stop believing that we could survive hardships? When did it become the norm to believe that it is supposed to be, will be, and if it is not there is an unfairness, easy?

My wife works with at risk children. it is hard work. She refuses to stop doing it, even though the district has cut her pay, and doubled her responsibilities. She knows its hard, but she knows that it will never be as hard on her, as it is on those kids who simply want to live a life as normal as it can be.
"people just use the narrow scope of their own expectations and desires to determine the value of someone elses's life; most people are unable to separate their opinion from the other person's reality."
I would like to know the reality of *that mother*. As you well know, one autistic son is not the same as any other autistic son. I'm surprised you have painted with as broad a brush as you have in describing two very specific circumstances.
I sense fear in your post that any steps in the direction toward the mother are steps away from your son. That fear has a very real foundation in this reactionary society of ours. I can empathize with that, but condeming this mother for her last desperate act is a judgement come too late.
I have to say, I am shocked at the harsh judgement with which you responded to this tragedy. You seem to think primarily of its reflection on your own child, "When it is even intimated that this killing was done out of mercy, it changes the value of my son's life. It says that his life is less worth living,... I think it's safe to assume Ms. Hodgins wasn't thinking about you or your child when she killed her son and, though you don't seem to want to acknowledge it, herself. Rather, in giving up it seems she was stating her own belief that there are fates worse than death.

I don't have an autistic child though I am closely involved in caring for a sister with an autistic-like (not formally on the spectrum) disorder and transitioning her care and supervision away from our very elderly, over-involved mother who is often destructive to her. She gets good services, though our newly Republican legislature is doing their best to bring them down to the level of California and other states. Even so, it still can be hard. I can barely imagine the difficulty of giving full-time care to someone disabled on the level of the young man in question here but, more than that, I can't imagine not sympathizing with her. Perhaps your son is as disabled as hers and you understand more of what she had to deal with but we don't know from your links what level of support (or opposition) she got from her husband or other family, what personal resources she had to call on, or any other details that might inform our judgement. Without that, I can only sympathize with what seems like a desperate plight.

I wish you great success in restoring state support for care of the disabled. I admire your efforts in that area.
Thank you for commenting Jewellya
I am very sad that this woman took her life-any time someone takes their own life I can only imagine that many difficult moments have led them there. I'm actually not out to condemn her here, though I have...my comments are really directed at the people reacting to the story, to those who so easily sympathize with a parent who killed their child. Whatever the good intent is to reframe what has happened, it makes the conversation turn from the victim. And when someone can somehow understand how a person could get to the point of killing their special needs child, then in one broad stroke they are justifying that special needs person's death.

"people just use the narrow scope of their own expectations and desires to determine the value of someone elses's life; most people are unable to separate their opinion from the other person's reality."
I would like to know the reality of *that mother*. As you well know, one autistic son is not the same as any other autistic son. I'm surprised you have painted with as broad a brush as you have in describing two very specific circumstances.
I sense fear in your post that any steps in the direction toward the mother are steps away from your son. That fear has a very real foundation in this reactionary society of ours. I can empathize with that, but condeming this mother for her last desperate act is a judgement come too late.
Nerd Cred-
Perhaps my "harsh judgement" stems from having a child who is perhaps very similar to the young man who was killed. My son has profound disabilities, and he has been though a lot, which in turn means I've been through a lot. I live in the same region and my son attends the school where the young man spent most of his education.
I am most concerned with the ease that comments fly about that even a desperate situation could justify someone else's death. I do think she may have been only thinking of herself, and when the media shares the story it focuses again on how hard her life was, not on her son.
--
I know some background of the family, but what is not publicly known is not my story to share.

Thank you for your care for your sister, and your mother, and thank you for your comment.
DH Austin-
I have thought about that a lot--there is no "fair." And I am thankful that I was not brought up to think that way. I do think we should strive for equity, and that means some people are going to need to give more, and some will need more.
Thank your wife for me.
As a person who works with children with Autism Spectrum Disorders, I know that supporting them is a specific kind of challenge. Sometimes they hit you, or scream for hours. Sometimes they don't appear to notice that you are in the room.

And other times they reach for your hand, look at you, and make a precious connection. Sometimes they surprise you with a small but important leap forward socially, and you feel like you could burst with joy.

These children and adults with ASDs are just as important as people without disabilities, and they make a difference in the lives of others every day. Parents of folks with ASDs don't have an easy time of it, but they love their children. And their children deserve to be loved, even if others perceive them as a burden.

That woman who killed herself and her son committed murder. She probably didn't see it that way, but she took the life of an innocent person who could not defend himself. That is a terrible tragedy for the child whose life was cut short. And it is a terrible tragedy that she reached a point where she believed this heinous act was necessary. If we as a society could do a better job of supporting caregivers of adults and children with disabilities, we could absolutely minimize the desperation that surely accompanied this woman's horrible decision to end two lives.

Our children are precious at every age, regardless of disability. They deserve to live in this world and be loved. We have a collective obligation to make this possible.
As the dad of a (now) 27 year old son with autism, I can only say that I cannot understand this woman. I cannot pass judgment on her actions other than to say what a tragedy is was. The expectation and the reality can often be crippling.

I do understand the work, the heartache, the need for advocacy and activism for such people as our son and others like him. For 15 years we struggled with school districts (using IDEA), local, county and state agencies, insensitive teachers, administrators, poorly trained aides, and all the rest to get our boy what he needed. We testified in committee; we formed advocacy groups; we became familiar with the laws.

In the end I think we did a pretty good job of it. Kevin is doing fine and lives in his own little place with full-time supervision, but he does have his own life and privacy.

In large measure it cost us our marriage, but we're all three of us doing better than ever.
A very tragic story, but I still sympathize with the mother who felt she had no recourse but to kill her son. She must have been suffering a great deal. She also deserves compassion.
Jennifer, as some background, I was caretaker for my mom who has Alzheimer's and had no help in this regard from my only sibling, until I had to put her into a nursing home. I know this is slightly off topic, but I do understand the stresses of taking care of someone with special needs.
i was once a caseworker in the south bronx who worked with the families of autistic children. every case is different. so is every family that has an autistic child. so is every caseworker, home attendant, and placement facility.

i've actually saw some of the worst cases in middle-class families rather than the poor because they won't accept help and think there is something "wrong" if they allow themselves to accept help i.e. they would rather kill their child and take their own life.

It's a lot about attitude and believing attitudes can change both individually and collectively.

thank you for your work.
It's a tragedy all the way around. I work in a 5-A High school which has all sorts of special-needs students, some of whom are autistic. One young man acts out violently, but solutions have been worked out for him. I have in the past questioned the wisdom of having profoundly disabled students "mainstreamed" - until I witnessed the "general ed" students who interact with them through a school club, Circle of Friends. Somehow, interaction with the Special Ed students brings something wonderful out of our General Ed students, something real and beautiful and not faked. A humanity, for lack of a better word. I can't put a price on it, and I think all the students, Special and General, gain something of immense value to take with them the rest of their lives. I'm so sorry this woman and her son did not have the chance to be part of something like Circle of Friends, and High school. Yes, they "age out" at some point but while they're with us, they are learning coping skills along with reading, writing and arithmetic. Programs do need to catch up to them, yes, but availing oneself (and one's special needs child) of all that is legally available can go a long way to creating a functional life.
It is a tragic story, and I'm so sorry, for both of them.
It's frustrating when there are no support groups available to families with special needs children whose lives, unlike other children, are constantly placed under a microscope.
My child has autism and I understand how the mother felt and how overwhelming it can feel, but I don't agree with what she did.
Wow. What a tragic story! Thanks for bringing this to light.