Blame, Excuses, and The Big Picture

The death of 14-year old Alex Spourdalakis - an autistic young man - at the hands of his mother and a caregiver has definitely struck some chords. Understandably, people are angry. How can they not be? A child was killed at the hands of their parent. Regardless of Alex's autism, it's severity, and however "hopeless" the situation may have seemed for his mother, this young man did not need to die. His death was not the answer. 

I've heard this covered from one of a few angles, depending on the source:

"Alex's mom was a victim of a system that failed her and drove her to where she felt she had no other choice." I'm mostly hearing this from the mainstream media, but that's to be expected. They're going to take an angle that gets them page hits. 

"No one is talking about Alex. What about him?" Some bloggers have taken this slant. While I agree, I think it gets more complicated than this. We'll explore that further. 

"Killing your child makes you nothing more than a monster. Alex's mom didn't do it for X, Y, and Z reasons, she did it because she's evil." Again, I think this needs to be explored, as does the difference between reasons and excuses. It's not always as simple as good vs. evil. 

The one thing I think we can all agree on - besides for the mainstream media - is that pity for Alex's mother ended when she chose to end her son's life. Really the method doesn't matter much to me - ending a life is ending a life - though she did so in a very heinous way. The fact is that her situation might could have been worthy of some compassion had she not killed her child. When she decided to do that, she made a decision - to decide who is worthy of life and who is not and what constitutes a life worth living - that was simply not her choice to make. 

This is where I differ from the way others look at that situation. While I don't agree with them, Alex's mother had her reasons for what she did. She must have. Very few people kill with no motive - no reason - whatsoever. Granted, sociopaths and the like can act in that manner, but I'm not sure that speculating on Alex's mom's mental health status beyond that of a stressed out special needs parent will do any good. We can never truly know, but I suspect she wasn't sociopathic or having a psychotic break. I don't think she was insane. I believe that based upon her reasons - wrong as they were - she felt that her actions were justified. She was wrong.

So while I believe she had a reason for what she did (I don't believe Alex's mother was simply evil), a reason does not make an excuse. She can't use her flawed reasoning to justify harming another. 

The problem I have is this...I cannot simply sit back and say that some people are just evil. To do so implies that there are a certain number of people who do this and, therefore, a certain number of lives that will be lost while we stand back and say that some people are just bad eggs. That, to me, is unacceptable. That makes each of us just as culpable in the death of the next innocent child for our inaction. 

However, if we are going to act in an effort to protect disabled children and adults from falling victim to the desperation of their parents and caregivers - as exceedingly rare as that is - we have to examine the reasons for why these parents like Alex's mother act in the way they do. 

Brainstorm with me here for a moment. What are some reasons we hear used in reference to these sorts of crimes?

Parents (from now on, I'll use that term for both parents and other caregivers) get overwhelmed. 

Parents can't handle the stress. 

Parents can't accept their child's diagnosis. 

Parents feel hopeless. 

Parents need more support. 

It's that last point that I think we need to focus on. For the people who say "What about Alex?", I'd say that this focus is for him. Alex did not ask to fall victim to his mother's abuse. No child - disabled or NT - does. No abuse victim does. The fault - the problem - lies with the abuser; however, if we have any hope of stopping such abuse and killings from happening in the future, we have to focus on the problem. The parent. 

That doesn't mean that we need to lock all parents up to protect their children from their brutal potential. As I have said - and I'm sure you feel the same way - we get overwhelmed. We all have days when we're at the end of our ropes, when we feel we just can't handle this. Yet, I've never considered harming even one hair on my precious boy's head. What makes my path diverge from that of Alex's mother? Why am I able to hold it together where she cannot?

It's probably many things. We're different people with different personalities and different thresholds for going over the edge. "The Edge" probably also means something different to all of us. My edge might be consuming a whole bottle of wine after putting Jack to bed or - most recently - a whole pint of ice cream. Someone else might have a different edge. Alex's mother's edge clearly involved killing her child. 

What else do I have that she didn't? Maybe I had more support. I have family close-by. I have all of you readers. I have my real-life special needs support group full of mamas I can turn to because they know my journey. It's familiar to them. I also have a somewhat healthier way of coping with stress. I release it by being open about it (which gets problematic, I'll explain in a moment). I eat ice cream rather than harm someone else. I'm fairly tenacious, so I don't give up easily. 

In other words, I have support, I have fairly healthy strategies (if you don't ask my doctor) for coping with the stress, and I have breaks when I need them. 

Here's the thing, though...I'm lucky. I'm lucky because these supports are just kind of there for us and I didn't have to ask. Not everyone is so fortunate, as I am well aware. That's where we come in. 

In order to protect individuals like Alex - in the true spirit of thinking of Alex - we need to address these issues in the parents to try - and my God we must try - to prevent another innocent life lost. I'd like to see changes in our mental health care system in which family counseling becomes standard care in the event of a "life event" like the birth/death of a family member, marriage/divorce, loss of a job, and the diagnosis either of a disability or of a serious illness in a family member. All of these events cause great stress to families, and counseling can give them the coping mechanisms - as well as an outlet - to keep parents from going over the edge. Counseling can also help talk parents through the grieving process that occurs upon a loved one's diagnosis, helping them come to a place of greater acceptance and understanding. Such a place helps parents stay away from hopelessness. 

We also need to expand respite as a part of the standard care for any person with a disability. While I am lucky to have family nearby, many of you are not. However, I'd argue that a small fraction have any type of respite care covered for your child. Instead, this leaves parents caring for an individual with no downtime. That's just unacceptable. No one can function like that forever. Especially for our kids who often need trained nursing care and assistance - not the teenager down the street who took a babysitting course - respite care might be the only option a parent has for taking a break. We have to expand its availability. 

Also, we have to stop demonizing autism parents. One very disheartening thing I read often in blogs is that parents are to blame for the way the public perceives autism because we complain about our kids. That parents should not voice those less-than-rosy aspects of raising an autistic child because of how people will view our children as a result. Well, I don't think that anyone has ever looked at me differently as an adult because my parents said that I pitched temper tantrums and was a pain to potty train. In fact, all parents complain about raising their kids, but for some reason we look down upon special needs parents for doing so. I'm not sure why, because in the end we're all parents!

If we continue to silence parents when they dare speak their feelings about raising a child that presents some challenges, those feelings will get internalized. Those parents will feel silenced and will stop seeking help. We have to make it okay for autism parents to vent frustrations. It is better that they write about the struggles they have rather than take them out on their children. After all, frustration and complaint does not equal not loving your child. 

And what about the way in which we demonize the choices that some autism parents make? Well, my thought on this is that any choice is better than causing your child physical harm. Abandoning your child to someone who can care for them is better than causing your child physical harm. Hurting your child is the one choice you are simply not allowed to make. So, while we might look at the parent who abandons their child to the state and feel superior, as though we'd never do such a thing, perhaps we should reserve judgment. If the alternative was the one that Alex's mother chose, I think that the parent giving their child to the state made the better call. As a community, we have to let that choice be okay without condemning parents. If we condemn, fewer parents will make those tough choices and will resort to the more desperate ones. 

I so hope that I do not ever have to write about one more situation involving an autistic child killed by his or her parents. I do not forgive, condone, or excuse Alex's mother for her actions, but we must be more mindful of what pieces are missing in these families that are needed to produce a safe environment for disabled children and adults to thrive within. As a community and for the good of autistic individuals, we have to address these issues. We have to, or else there will continue to be Alexs who fall victim to the brutality of their parents. 

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As an end note, if you ever have thoughts of harming your child in any way, seek help. Put your child in a safe space and call anyone - family, friend, neighbor, doctor, therapist, or the police. Telling someone that you need them immediately because you cannot handle your child at the moment is a far better solution than harming them. It takes a far braver person to admit needing help. Please do so if you ever get to this point. Please.