Friday, February 26, 2016

Why I'll never say his autism is harder than yours

One thing that shocked me the most upon becoming a part of the autism community was the great divide and the tension between seemingly warring sides of the spectrum.  You don't have to go any further than the comments section on an autism blog to find the division and anger.  I see the derisiveness in our support groups, in our special ed classes and in our internet discussions. I see support groups separating into functioning levels, as parents with kids on opposite sides of the spectrum can't relate to one another.  Amongst parents with children on the more severe end of the spectrum there is this constant one upping.  This constant bickering over whose worst days are worse; over which child's autism presents the most challenges.  When you put it that way, it sounds crazy, right?  Are people really arguing about this or feeling slighted if their child isn't "severe enough" to be considered on the severe end of the spectrum?

Well, in fact, we are.  Maybe I should give you some context.  How many times have you heard or read:

"At least your child talks."

"Oh, he's mainstreamed some of the day?  So he's just quirky, right?"

"Well, you just don't know what it's like to have a nonverbal kid.  It's a different struggle."

"If you don't deal with aggression on a daily basis, you don't know the autism I know."

 Sound more familiar now?  There is nothing wrong with acknowledging that autism is a broad spectrum and it affects everyone differently.  But when we start belittling others' struggles and day to day challenges, we start hurting our entire community.

I was reading comments on one of my published pieces the other day.  One reader said something like "The person who wrote this clearly has a high-functioning child.  They don't deal with self-harming or aggression or destruction."

Except we do deal with self-harming and aggression.  Every day.  We do have our house torn apart and things broken mid-meltdown.  The first thing I thought: How dare this person presume to know what we go through day to day based on one article, based on one day, one snapshot of our lives.

My second thought: Damn, I think I have said something like that before.  I remember a couple years ago arguing with a self-advocate and saying something to the effect of "Well, if you are sitting there typing your thoughts, you have no idea what severe autism is like.  Your opinions don't apply to ME and what MY KID goes through."

How dare I presume to know what someone else's autism is like or how severely they are affected.  That autistic adult could easily be my son in twenty years, possibly able to type his thoughts with some articulation, but also having gone through years of grueling therapy to get to that point.  They could easily be someone who can type their thoughts but still can't speak or someone who still struggles with so much anxiety they cannot leave their house.

I'm sure at some point we have all been on our side of this divide and we cringe when the other side tells us we don't have a right to feel the way we feel.  When people unfollow my page because they see a video of my son talking and they assumed he was nonverbal like their child, it hurts.  Especially as I go through his re-evaluation results this week and see that my beautiful five year old is still performing like a three year old and got "poor" or "very poor" marks in almost every category.  Don't presume to know another family's struggle.

When my friend tells me her Aspie son has attempted suicide again because he is so very aware of his differences and isolation, my heart breaks.  And it breaks even more knowing that before I knew her, I judged that side of our divide.  I thought "Are they really complaining their gifted Aspie isn't challenged enough in school and is having behavior issues?  I would love to have that problem."

My child may never live on his own, but maybe he will find his version of happy and that will be enough.  Your son may never say the words "I love you," but his smile and his hugs are enough.  My son may never stop having explosive moments, but maybe he will learn to get through them without hurting himself or his family. Your daughter may never have a lot of friends, but maybe she will find great satisfaction in what she does for a living.

There are going to be hard days and although our hard may look different than yours, I will never discount your feelings or experiences because they are different than my own.  We're all in this together and if we spent a little more time building each other up rather than ripping the other down our community could move mountains.  

Tuesday, February 16, 2016

Where this Mom Stands on Politics

As I look out at the 2016 election landscape, I can't help but feel a little sad.  There aren't any candidates in either party for whom I want to vote.  All of the front runners make me scared for our country and the direction it's headed.   When I look at our choices I can't help but ask: where are the normal people?  Where are the candidates that are in the middle and admit not all issues are black and white?  Where are the candidates like me?

I figure most of America is a lot more like me than the candidates currently vying for our votes.  Most of us in America are shaped by our experiences, our upbringings and our current situations.  Our political views are no different, with each passing year and experience molding our perspectives.  And like life our perspectives become complicated and multidimensional with a whole lot of gray.  The truth is most of us can't get on board with one political party's platform, because there are simply too many extreme stances taken on a variety of issues.  Issues that we know are not all black and white.  I have never registered as a Republican or a Democrat, because frankly, I think both parties have more wrong than right.  Unfortunately in a two party system, us independents end up voting for whomever we think will do the least amount of damage, not for candidates we actually like or with whom we agree.

Being an unaffiliated voter, I identify with both parties on certain issues, which doesn't make me indecisive; it makes me human.

I was brought up in a hard working blue collar family.  We had a nice house, but money was tight.  There were times when hiked income taxes on my parents' hard earned money seemed like a punishment for working hard enough to make just a little extra.  There were other times that were harder, when my dad was laid off from the trade he knew during which we relied on unemployment and Medicaid for healthcare for us kids.  As an adult I stay at home with my kids and my husband makes a good living.  As a military family, we have to live in different areas with different costs of living.  We have to secure housing every time we move, which for many families means owning a house you couldn't sell and renting or owning another house you live in.  There are also a lot of costs that come with moving every 1-2 years, living away from family, and having a special needs child.  For all of these reasons we are grateful for tax breaks when we can get them.  I have seen entitlements abused and overused and get frustrated with those that see government entitlements as way of life.  But due to my upbringing and much of my extended family still living in areas where the economy is hurting, I also understand the need for taxation and the importance of government assistance (which is hopefully never looked at as a long term solution, but help getting through hard times).  

I see the cuts of military dependent healthcare and lack of cost of living and housing increases for military families that have occurred under a Democratic president.  It angers me that our Vets and our military families are often getting a lower standard of care than those on government assistance.  I have also seen the waste and incompetence in military healthcare and bureaucracy in general, so I understand the public's discontent with frivolous spending that could be avoided with better organization and less waste.  But based on my military healthcare experience of three hour hold times to get in for a sick visit, medical malpractice without accountability and understaffed facilities that foster inadequate care, believe me when I say you don't want the government running your healthcare.

I see the Common Core debacle and Republicans fighting to get back to states' rights with regards to education.  I do think decisions regarding our children's education need to be made at the state level by educators and administrators not politicians with little experience as to what works best.  But I have also lived in states in which current federal regulations put in place to stop discrimination against children with disabilities are not being followed.  Neither the state nor federal government are enforcing regulations that should protect these children.  Funding is too frequently shifted away from special ed in states where our children are seen as less than.  Seeing the disparity in education across different states first hand, I understand the need for federal guidelines and federal interference in education.  I actually wish there was more federal interference in this regard, as there are so many children going without the education and intervention to which they are entitled and desperately need.

On social issues I'm personally all over the place.  But, to me, it doesn't really matter because I don't think the government should determine or care what happens in our bedrooms or at our doctor's office.  I will say I find it interesting that the more religious among us seem much more concerned with gay rights and abortion than taking care of those that need it most.  It's great if you are prolife because of your religious views, but I hope you are prolife for the duration of that baby's life.  I hope you care how they will be fed and housed if the mom doesn't have the means to do so.  Wouldn't that be the Christian thing to do?  I guess this is why I find it so surprising that evangelicals are rallying behind a man that spews so much hate and complete lack of consideration for those in our society that need compassion the most.

On the flip side, I think if one believes something is wrong or offensive, they have a right to say so.  I don't think there should be "safe spaces" set up on university campuses.  I don't buy into the idea that we all have to embrace a liberal agenda just to keep from being called bigoted or sexist.  One of the things that makes our country amazing is freedom of speech and I am afraid that the politically correct crusaders are stomping out that freedom.

I guess the most disappointing part of this election to me, is that both sides are inciting fear and taking advantage of the fear of the "other".  I don't see passion.  I don't see great ideas that could bring people together.  I see division and fear mongering.  I have seen multiple posts from friends on both sides of the aisle saying "I don't care who our party's nominee is."  "I don't care if they are guilty."  "I don't care if they are crazy."  "I don't care if they are an asshole." "Anything is better than letting the other guys win."

How sad.  So none of these campaigns or their supporters are telling me to vote for some great person or platform.  You are all telling me you are the best of the worst.  And I (along with the rest of the country, I think) am thinking how pitiful that we think so little of our politicians that we hold them to a lower-than-decent-human standard.


I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...