We Do Need To Talk About The Whys...

I'm just going to dive on in here...

When Kelli Stapleton tried to kill her daughter and herself, I was very black and white on the issue (I wrote some posts last September you can peruse, I won't link to them all individually.) Murder is murder, and every fiber of my being screamed at how wrong it all was. I felt no sympathy for Kelli. None. I wanted her in jail. I wanted her punished. I wanted an example to be made so that the public knew autism wasn't a reason for murder. I didn't want to talk about the "why's", because to me that felt like looking for an excuse as to why Kelli did what she did. Or finding a way to excuse what she did.

I was angry that the same people who railed against the murder of Alex Spourdalakis didn't react the same way to Issy's attempted murder. That because Kelli had a blog and was active on social media, somehow she mattered more than her daughter. We saw her side of the story, whereas with Alex we saw his. That the only reason people jumped up to defend Kelli was because people knew more about her than Issy, and if Alex's mother had blogged about her experience, instead of telling us about Alex, she would have fared better in the court of public opinion, too.

In all honesty, none of knows what really went on in the Stapleton home, or how Issy was treated. We never know the inner workings of a stranger's life (which is what we all really are, when we only meet online.) I was in the small minority of people who wasn't moved by the video Kelli put on her blog of Issy's violent meltdown, at least not in the way she wanted. I was upset that a mother would videotape her child at her most vulnerable, and seemingly egg on an attack to show the world. It rubbed me the wrong way from the beginning, and I admittedly hid from my timeline any mention of Kelli, thereafter.

I vehemently believed that parents should never come to the point of murdering their children because they just shouldn't. As though thinking that way is enough. It shouldn't happen, so there's no reason to try and understand any "whys", or figure out better ways to support families. Just don't kill your kid.

A year later, I still don't have any sympathy for Kelli. I have, however, tried to think about what happened by replacing Kelli and Issy with families I know. Women whom I respect and have treasured friendships with, if only online. What if one of them did the unspeakable? Reached the point where, for whatever reason, taking a life felt like the only option. Would I be as black and white? Would I not want to talk about the "whys"? Would I think that trying to make sure families don't reach this point was somehow excusing the act itself?

So, something changed. I realized that while I do not condone or understand what Kelli did, the truth is, families do reach this point. Wishing it didn't happen isn't helpful. Shutting down any conversation about how we can keep parents from reaching the point of no return only places more kids in danger. If I truly care about the other autistic children out there, and don't want to see headlines like this again, there does need to be a conversation about the "whys", and there does need to be a conversation about how to better help families. Having this conversation doesn't make the crime any less of a crime. It protects children like mine from being harmed when parents reach the end of their rope, with nowhere to turn, and services that they believe just won't work.

Something else that made me realize I needed to change my thinking happened when I posed a question/concern to an online autism group, recently. I found many families were struggling in a similar way, yet none had any idea what to do. No doctor or therapist had helped. No one had any answers or suggestions. We really are a community that is sadly lacking in support, and sees an unbelievable amount of money poured into researching how to prevent the diagnosis our children carry, but no money poured into helping the kids and adults already here. Our kids matter, and we as caretakers matter. We all deserve to be happy, healthy, and supported.

Murder is always wrong, on that I remain unchanged, but being unwilling to discuss ways to prevent this from happening again and again is also wrong. I wish I had the magic answer, but I don't. At least now I understand we have to ask questions and look for an answer, because not having this conversation means more kids will suffer like Alex and Issy, and that shouldn't be OK with anyone.

Not Sorry

I've been blogging since K was a baby. At first, I was just a typical mommy blogger. I chronicled our daily trips to Target, playdates, and other inane things. I had no "cause" at the time, and so it served as a way to keep family updated when we lived in another state. After K was diagnosed, it slowly turned into an autism blog. I discovered Twitter, met a lot of other parents, and started blogging about life with an autistic child.

It was rough in the beginning. I wanted any other life but the one I'd been handed. I wanted a cure. I wanted my dreams back. I can't say I'm proud of the blogs I wrote those first few years, but I don't really regret them. They were my truth at the time. My blog connected me to a lot of fabulous people, with whom I developed good friendships even though we never physically met.

I won't lie. It was nice to commiserate with other parents about my daily struggles. To know I wasn't alone. To have a support system, when I felt like I was falling into the deep, dark pit. I was desperately trying to find my footing in this new, unexpected life, and social media helped.

From the beginning, I befriended other parents who weren't exactly like me. Who tried autism therapies and treatments that I did not. There was a time we were thisclose to going down the chelation road, but I read about a child dying from it, and quickly crossed it off our list. I knew there was a whole world of "stuff" out there, when it came to autism, and unless someone was downright abusing their kid, someone having a different path than us never bothered me.

We never did GFCF, but I had many friends who did. We never saw a DAN doctor, mostly because of the cost, and me wanting a "for sure" cure before going broke. But I knew people who said these types of treatments really helped their kids, and who was I to discount that (and because of B's medical issues, biomedical treatments are something I have thought about recently. Who doesn't want to ease their child's physical symptoms, related to autism or not?)

I knew people who did ABA and Floortime. Those who homeschooled, public schooled, and private schooled. I knew people who saw autism as a gift, and those who saw it as a curse. But I also saw parents as more than that. More than just their autism treatment plan. As people who listened, who cared, who were good friends. Their particular belief system didn't have to match up with mine in order for us to have a relationship.

For me, however, there are some things I just can't abide. There is a line I draw that separates parents trying to do right by their kids, and parents harming their kids. Certain treatments that can only be viewed as abusive, at least in my own mind. I think we all have that invisible line, that point where we shift in our seats and get uncomfortable. When we hear about a treatment where the risks seem to outweigh any benefit. Things tried by desperate parents, who will believe any snake oil salesman that comes along.

I get the desperation. I was there once, myself. But, I can't get behind blindly following someone who claims they can cure your child, without doing any actual research, or stopping to think if death is a side effect you can accept. And, obviously, murder is something for which I will never make an excuse. But I've made that clear on this blog before.

So there's a line, but up until that line I don't really care what you do. As long as you aren't harming your child, based on my personal opinion of harm, we can be friends. Unfortunately, this isn't true for everyone. I learned this lesson recently when I came up on the receiving end of the "blocked" function on Facebook.

Honestly, I am surprised I am not blocked more often. I don't mind giving my opinions on social media, or this blog, and that means there is always someone who might get offended. Someone who doesn't agree with me on a particular issue, and not being able to move past it hits the block button without a second thought.

But, even I don't block people, because if I blocked everyone I don't agree with (due to religious views, political views, or autism views), I would have very few, if any, friends. I always joke about how controversy is never ending on my personal Facebook page, but that's only because I have a diverse group of friends...who like to fight with one another. But what's life without diversity, right?

But, getting back to my point, there are some who unfortunately cannot handle when someone disagrees with them. I think that when you post something on Twitter or Facebook, or write a blog, you need to understand there will be those with different opinions. Being active on the internet means having a thick skin, especially if you are trying to parlay your internet presence into a career (I am not, and there are times my skin is very thin, but then blogging isn't my life/job, so it's not a big deal.)

I guess it just shocks me when someone decides they can only surround themselves with those who believe exactly as they do...about anything. Some of my closest friends differ in their opinions on autism (and many other things), but that's OK, because I see them for who they are...good people who have impacted my life in a positive way. Whose children I cheer for when they succeed. Whose shoulders I cry on when life gets rough. Whose friendships I value, even though we aren't the same person.

Life is too short and too precious. We are never going to agree on everything, no special needs community ever will, but we must be there for one another. Sure, we all have that line in the sand, but I think it's important to examine where that line rests. The last thing we need is another reason to fight.

So, am I sorry I got blocked? No. My true friends accept me for me, and understand we can be friends without being on the exact same page. For them, I am truly grateful.

Selfish

I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

Be Kind To One Another

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Sometimes I think the autism community looks for ways to be divisive. That all of the controversial topics we argue over aren't enough, and more gasoline needs to be added to an already out of control fire. That we need to call out each and every person who thinks differently than we do, or who wants to change something we don't personally care about. That there is only one way, or one blogger, or one organization to listen to, and everyone else has nothing important to say.

Being nice is hard. It just is. It's not in our nature to lift people up, or think before we speak. At least, it doesn't seem to be. If we are honest with ourselves, I think we'll agree how it easy it is to say something negative, than it is to be supportive. Easier to criticize, than find something kind to say. Sometimes we feel such a great pull to share our opinions, we don't stop and think if we'll be hurting someone in the process.

That is, if we even care.

The truth is, there isn't an "all knowing" person within the autism community. There is no one organization we need to follow like sheep. There are lots of different people, with lots of different opinions and ideas, and most of them deserve the same amount of respect as the next (I say most because there are certain things I am not OK with, and will never get behind. Things that hurt our kids, physically, or emotionally.)

The other day I wrote about the importance of reaching out to those you see in your daily lives, who might be struggling. Who might just need a friend. Who are so caught up in loss and fear and desperation, they can't see a way out. Or who are just having a tough day, and need to know one other person understands. If we aren't careful with our words, with what we put out on social media or our blogs, there is no hope we'll ever be a true community of support. There's little hope we'll even be seen as decent human beings, and not just an angry mob looking to pick a fight.

I urge you to just think for yourself, fight for what you believe in, and don't let anyone knock you down. There is no one cause greater than the next. No one person with all the answers. Don't be broken by those who call your fight wrong, or petty, or stupid. Don't let anyone trivialize your life, or the lives of your children.

Be strong.

Be supportive.

Be a friend.

Be kind.


We'll fight, not out of spite
For someone must stand up for what's right
'Cause where there's a man who has no voice
There ours shall go singing
My hands are small I know
But they're not yours, they are my own
But they're not yours, they are my own
I am never broken

In the end only kindness matters
In the end only kindness matters
                                          -Jewel (Hands)

Are We Allowed?

I struggle with our family belonging, within the Autism community. I look at K, and wonder how she can possibly have the same diagnosis as those profoundly affected? How can I look to those who struggle so desparately, and say we are on the same team?

I recently took K to an Autism friendly production of Annie. It was my favorite musical (and movie) as a child. I was so excited to share it with my girl, in a place where she could be herself, without judgement. If she bounced in her seat, needed a beak, couldn't keep quiet, it would be OK. A place where I didn't have to feel guilty, or like all eyes were on us.

Except, I did feel guilty. A large majority of the people there were those who live with severe Autism. I looked at my girl and felt like a fraud. I felt ridiculous for even purchasing tickets, and maybe taking seats from those who needed them more.

To be honest, there are times I struggle with even telling people K is on the spectrum. We have testing that proves it, from school and outside clinics. She faces very real obstacles on a daily basis, and there definite struggles in our lives. She isn't even able to be mainstreamed at this point. But, still, she speaks, she interacts. She is high-functioning by the standards set by most, and there are those who have spoken out against our place within the community.  Who have told me as much. That is when the guilt sets in.

This guilt. This feeling that we don't belong, it makes me wary of sharing too much. There are a select few with whom I am completely honest, but for the most part my days are filled trying to find silver linings.  Because, we are lucky. At least, that's what I'm told. That our struggles, no matter how I percieve them, will never compare to those of others. That my fears, worries, anxieties, they all pale in comparison. Because, there is always a comparison.

I didn't choose where my daughter fell on the spectrum. There was nothing magical that took her from being a non-verbal toddler, to the higher-functiong child she is today. It's just how things worked out. Does it make us any less part of this community?

That is the million dollar question.

Are we not allowed to share the difficult times because there will always be someone else who has it worse?

I want to say that yes, of course we are allowed. But, I don't know if I believe that myself.

And that can make life a very lonely place. Especially for my girl, because there are those who refuse her entrance on either side. Not typical enough, yet not Autistic enough.

I would love for there to be acceptance within the Autism community. For it not to be a series of one-ups, or who has it better (or worse). To be able to take K to an Autism friendly play, without feeling like we don't belong. That we are offensive in our presence, because there are those who struggle more.

And that maybe it's OK to not always look for that silver lining, because sometimes things just suck, and it's OK to feel that, even though, yes, there are those who will alwas have it worse.

We should all be allowed to live honestly, without judgement. Getting to that place is the challenge, at least for me. All I want is for my child to belong somewhere. She deserves that.