Jennifer Byde Myers
to help families are not available to the degree they are needed, often
leaving parents of children with intense needs feeling abandoned,
depressed, suicidal and, in some cases, homicidal.
I just sincerely wish these conversations could be separate. They must remain separate.
know how it happens, how the conversations seem like they should go
together. As parents of kids with intense needs, medical, mental or
physical, we are each slogging through life, with easy days and hard
days and harder days, until something really bad happens, then we are
triggered to say to the world, “See, look how hard this is. Why doesn’t
anyone care?” But the problem is that caregivers say this at the very
same same time that someone was trying to kill their child. The
minute you tie those ideas together the conversation changes into, “See,
look how hard this is. We told you. Have empathy. The poor mom was
really struggling. You can’t blame her.”
But you can.
You must blame her. We must unitedly and unequivocally say that we can
blame her because she tried to murder her child, and those other
caretakers, they actually killed their children. We can’t “cut her
slack” because she was having a hard time. We can’t even cut her slack
because she had been injured by her child, badly. We cannot say, “We
understand why she did it. You know her life was so hard because of her
daughter, because she didn’t have enough help, because she was burned
out, because…” Because what? So what do you mean exactly? So it’s
understandable when there are days or weeks, when life is hard…
Like when my son didn’t rest…for years?
didn’t sleep, he screamed. He bit himself
until he bled. He bit us and we bled. He lashed out. He threw himself to
the ground. He
broke my nose. He gave black eyes to me and one to his grandmother. We
went to doctor after doctor, and therapy after therapy to no avail. We
had no medical insurance for him because he had pre-existing conditions.
We paid the bills with credit cards. Our life fell apart a little bit, a
lot of the time, for several years. There are parts, emotional parts,
that are still raw. It was very hard. I was very sad, and hope was hard
to find on most days. So because it was hard, because almost every hard
thing led back to my precious boy who was beside himself writhing in
some kind of anguish that no one could identify, unable to speak to us
and tell us what was wrong, so it would have been okay to kill him? Of course not.
I know some of you know her, that mother, and maybe I’d feel
differently if I did, but I don’t. I can tell you this, if my best
friend tried to kill her son, you can bet your ass I’d want her in jail.
I would feel horrible. I would be certain that I had failed her as a
friend. I would mourn the loss of my friendship, but those things are
about me, and it would not change the fact that we cannot even intimate
that there are excuses as to why we can kill our kids. I would want her
in jail, held accountable without question. We can add in all of the complexities of our weak
family support systems, and lack of services, and all of those complexities may
be real and truly horrific, but they do not, ever, explain away the
fact that this woman tried to kill her child.
We can’t cross that line if we want everyone to value our kids and give
them an equal place in society, because in every other way that’s what
we ask people to do. We want our children to have a place in a
proper educational setting, and we want them to be able to go to the
movie theater and grow to have meaningful work, and a safe place to
live, and all sorts of basic rights. Then when it comes to the most
important right, the right to live, that’s where you cross the line?
I thought we had all decided that we don’t want our children to be
marginalized and put to death because they do not contribute enough to society.
Don’t we want our children to be treated as deserving to be called
wholly-human? A human who has every right not to be murdered because of
their neurological makeup? When
we tie the two conversations together it glares at me, and I am not autistic, so I
cannot imagine what it would feel like to be autistic and read that
a parent could, “see how that could happen.”
I don’t think most parents think that’s what they are saying when
they offer empathy, but even said eloquently, this is all I hear…my autistic
child is not as valuable.
but there can be no excuses.
We Do Not Cross the Line.
A version of this essay was previously published at jennyalice.com.