Monday, September 1, 2014

Because Ignorance Isn't Bliss...

I always wince when I hear someone start of a phrase or comment with the words "no offense" or in today's case "I hope this doesn't come off as condescending or rude..."  The thing is, when you start out that way, there's a pretty high probability that you already know that what you're saying is probably pretty rude, but you're giving that disclaimer as though you really believe that it will somehow make an entirely rude statement socially acceptable.

Sometimes I feel like I need to let the people who use these disclaimers in on a little secret, although I doubt it will actually change one iota of the advice they feel the need to unleash on the world around them:  Saying those words, doesn't change what you're actually saying.  It doesn't make it any less rude or condescending.  It just lets the person you're talking with know that you know that what you're saying is rude, but that you've decided to drop your filter and say it despite that little voice in your head that's telling you that maybe, just maybe, you shouldn't.

But what do I know?  I'm a stickler for manners and I'm also hugely hormonal as we roll through the third trimester and being in quite a bit of pain pretty much all the time these days, lowers my filter quite a bit and makes me far more likely to turn into a mama bear when someone says something along the lines of "well I may not be talking about your kids specifically when I say they're not smart and un-athletic and unpopular but I think that generally when parents say that they're kids have a diagnosis that's what's really going on."  

And then it takes all of my self control not to use the word ignorant 50 times in the next paragraph because it's really the only word that comes to mind and Third-Trimester-Me has a really, really difficult time not responding to the aforementioned rude comments in kind.

Then I stop and take a deep breath and try to remind myself of why I do write about some of the struggles that our family has faced.  In the beginning it was because I was scared out of my mind.  I knew nothing about autism when Mae got her diagnosis and suddenly I was seeing the words "severe" in the papers I was receiving and seeing that she was developmentally not reaching any of her 18 month milestones at 3 years old and I was panicked.  I only knew stereotypes and that our lives were drastically about to change, that suddenly we had a social worker and we were arranging for there to be therapists in our house six days a week and it felt as if the world was turned upside down and shaken a few times and nothing would ever be the same again.

Later I would realize that things were different, but a wonderful kind of different because we were receiving the tools to help our daughter and she was receiving the tools that she needed to communicate with us in far more ways than had previously been available to her and while we've certainly had highs and lows, I find myself amazed each and every week at how much she's accomplished in the last ten months since the doctor first told me "I am a hundred percent certain she is on the autism spectrum."

So in the beginning I wrote because I was afraid and writing is how I deal with hugely unavoidable emotions.  It's how I process things.

But then I began to get notes and emails thanking me for sharing our story and telling me that Mae had always reminded people of their own child and that they'd gone in to see their own doctor after reading about her diagnosis and sure enough their child was on the spectrum and was now receiving services.  And my eyes fill up with happy tears just writing that because I know what a difference outside help can make when you are trying to figure out what on earth is going on.

I also write because I like to think that in a little way it helps dispel the darkness that is associated so often with autism and because I don't want the voices that my daughter hears when she grows up to entirely consist of people talking about stamping out what is at very basic level, the way that her brain processes information.  I write because while we've certainly had our share of challenges those challenges have made the high points shine all the more brightly and have made the triumphs far sweeter than they would have been without those lows.

That's also why I began writing about Sadie's two diagnoses.  A lot is said about ADHD, but I feel like Sensory Processing Order, with it's non-inclusion as a diagnosis at the moment in the DSM-5, gets short shrift, and I've watched as parents who receive that diagnosis for their child struggle to get help (and the part of the comment that said that there are resources for everything shows how little you actually know about this world because people struggle to get help for years and just... don't...).

That's part of why I've shared a tiny bit about Sadie's body's difficulty processing vestibular information. To dispel the ignorance that surrounds these acronyms.  Because this little girl I see growing into a more and more amazing person every day is smart (way above grade level in math with a vocabulary that will knock the socks off most adults and a tendency to sprout off scientific facts at random times as they pop into her head), she's social (she's the one that goes over to the kid no one is talking to and gets them to play), and she's helpful (for the past week she's been cleaning the entire downstairs of our house by herself, without being asked, because she's seen how hard it is for me to do things these days and she's just a super helpful little kid).  And none of those things mean that she doesn't need a little bit of help since the way her brain and body process sensory information isn't quite right.

With Mae I've witnessed first hand how it can be dangerous and how it isn't just a kid being "a little different."  I've seen her hit by a larger child swinging high on a swing and thrown about ten feet to land in the dirt on the playground.  I ran to her, my heart in my throat, as she got up and started to laugh.  It was the first sign that really got me worried.  If I'd known then what I know now I probably would have taken her straight to the ER.

I'm sure that more kids are diagnosed with all sorts of things these days.  I'm also sure that there are more diagnoses of all sorts of diseases across the board because we have better technology to identify them than we did a hundred or fifty or even twenty years ago.  And who knows, maybe someday we'll find out that there are other reasons that these numbers have increased and we'll realize that maybe it isn't a great idea to tinker with our food sources and genetically modify just about everything we put on the shelves in our grocery stores (but that is a subject for it's very own post, and this one is already on the far-too-long side).

However I won't be convinced that the fact that diagnoses are more frequent means that they aren't real or that the children who receive them shouldn't be helped.  In fact I wish that more help were available. I wish that waiting lists weren't a year long and that kids didn't linger on them as years when they could be receiving help ticked by.  I wish that schools and counties had the resources that they needed so that therapists weren't overloaded and left with huge wait lists of kids that needed help.

I don't know.  I've met plenty of parents and most struggle with the idea that there is anything wrong at all with their child.  It's not easy to take that first step, to make that first call, to go to that first appointment.  It's harder still to receive a diagnosis, even when you were expecting it, even when receiving it turns out to be the very best thing that could have happened because now you're in a position to learn and advocate and help your child.

I've yet to see a diagnosis used as an excuse for one of my children.  I see it as a tool.  I see it a starting point to seek knowledge and to learn, so that I can help them to be the person they were created to be.

These are cases where ignorance isn't bliss and knowledge is power.  When you speak, ignorantly on this subject, you just make it more difficult for parents who are struggling to understand the children God has blessed them with, to get help. You shame them into thinking that they should be able to do more, should be able to beat their child into submission if they just spank them hard enough or lock them in there rooms for long enough.  It's an ugly, ugly lie and it can damage lives if parents buy into it.

Try not to perpetuate that lie by giving your opinion without doing your homework.  Sometimes when we don't know anything about a subject, it's best to just remain silent, rather than sharing our thoughts with the world, and doing damage to those who may be in the first steps of seeking help.

3 comments:

  1. Many people speak our of ignorance, Cam, just because they like to hear themselves talk. In my caregiver's support group meetings, I've heard people confess how they criticized others for taking their uncontrolled Alzheimer's parents in public --- and now their parents are affected, and they understand --- and regret their earlier words.

    They say ignorance is bliss. No, it's just ignorance. Don't let it bother you. Remember, we're supposed to love them anyway.

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  2. I have been interested in your posts ever since I happened onto your blog (from somewhere else) right after Mae's diagnosis. I think the person linked to you because she also was dealing with her child's issues.
    Ever since I first heard about autism back in the 1970's I have wondered what it is all about; what is at the root of it, and what can be done for these kids to give them the best possible outcome. That curiosity keeps me coming back to your blog with an interest in learning more about autism as it really is lived, and learning how parents can cope with having an autistic child.
    I'm sure anyone familiar with autism knows that in the 50' and 60's autistic kid's moms were accused of being "refrigerator moms," meaning doctors assume the child was not developing because of emotional coldness on the part of the mother. No amount of protesting by the mother took away that judgment. I can't imagine what those women went through, knowing their child was struggling and not developing, and being accused as the cause. Did their husbands, mothers and mothers-in-law believe the doctor? Was she then suspected of being abusive, and untrustworthy? I bet she was. What suffering.
    In a way, that same sort of thing happens nowadays when people think a child's problems are the result of bad parenting. Although I understand what Anonymous was saying, that there is a lot of bad parenting out there, and sometimes the parents, in order to justify the bad behavior of their child, would rather have a diagnosis than admit they just don't discipline their kid. But it's so evident by your posts that is not you.
    Although you share a great deal about your life as a mom, I have often sensed there is so, so much you don't share because you want to protect yourself, your children and your family and I don't blame you. These public forums invite all kinds of opinions that can be unsympathetic and actually unkind and hurtful. It's kind of like living in a small town where everybody knows your business and feels free to comment on it.
    Autism is a real condition that exists outside of whatever someone does or doesn't do for a child. Diagnosis and therapy are attempts at early intervention to try to make the most out of a tough situation. Encouraging a parent to love their child as they are, and see the wonder and beauty of that child, helps develop that child and helps love to grow among family members. That is all a very good thing
    Cammie, you have said in the past you are not seeking to "cure" Mae, or make her neurotypical, and although I don't know if I would think that if I were the parent of a child with this affliction, I can understand your position, that you love her as she is, accept her as she is, and work with her as she is to make her the best possible Mae she can be in her little unique self. That takes a courage to accept what we cannot change, change what we can, and a wisdom to know the difference, to paraphrase a famous saying.
    You have many supporters who check into your blog daily, and who are rooting for you. You are growing in your own faith and life, and share yourself, your triumphs and sorrows, pretty regularly and I would say, heroically, without self pity or angry self righteous rants, and in this day of Narcissistic Self Disclosure, that in itself is remarkable. Inevitably, people will, either out of ignorance or malice or even just awkwardness in expressing themselves, say hurtful things.
    But you know that happens in real life, not just on the internet. So you have your work cut out for you, having to develop a very thick skin where your kids are concerned, and being ready always to inform, educate, and express a positive, hopeful attitude amidst the challenges of the life God has given you. Quite a tall order.
    Know that you and your family are always in my prayers, and I ask God to assist you in this vocation of wife and mother, and maybe, autism activist.
    God Bless. ~ Bonnie

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  3. I am sure you are very aware of the latest research on autism, but I thought this article was so interesting.
    http://www.biznews.com/health-briefs/2014/08/autism-study-on-brain-pruning-mechanism-may-point-to-new-treatment/
    God Bless. ~ Bonnie

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I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!