Autism...And ONLY The Version Of Autism I Know Personally

A long time ago, (three years, really), I opened up a Facebook account, and dug my way out of extreme loneliness. I have written before about how isolating the life of an autism parent can be. In all honesty, parenting ALL kids can leave us isolated if we don't find our own outlets for social interaction, but for parents of children with disabilities, (or DIFFERING abilities, because God forbid someone should be offended), I promise you, the struggle is VASTLY different. This post is not about who "has it hardest". There are just challenges that come with parenting a child with...um...challenges, that you can't fathom unless you experience that challenge. If you think I'm wrong, come on over for a weekend. You can wear my shoes.

I don't mean to tell this part of the story because I need sympathy, pity, donations, a pat on the back...I tell this as a matter of fact. It just is. But I needed to state that matter of fact, to set up what I really want to talk about.

Dignity.

I tell true stories about what goes on in our lives. To be honest, autism is probably a small part of our lives, but it does manage to touch every other aspect, so it becomes bigger than it seems to be. My own child is severely autistic. His level of understanding is probably less than that of a two year old, and he has NO COMPREHENSION of social media or opinions of others. If I see another child pointing at my son and laughing, or making comments, it rips me to my core, but it doesn't affect my son in the slightest manner. What others think or say has no meaning to my boy. He could see a group of kids pointing at him, and he would simply continue smiling in his way because that scene from Rudolph is still playing in his head. He doesn't understand the concept of shame, embarrassment, cruelty, or anything else that has the potential to emotionally hurt him.

When I tell stories of having to clean sheets almost every day because my 14 year old son is a bed wetter, I don't tell those stories because my son is too cognitively impaired to be embarrassed by them. I tell them because there are too many parents out there who are isolated, and they have no one. And when they are going through some of these same struggles, they think they are doing something wrong. They feel like they are failing. They are NOT failing. Like me, they simply haven't found a solution yet. Maybe there IS no solution. There are lots of folks who would disagree, (I'm currently divorcing one of them), but the people who are loudest with their criticism, are often the most silent when you ask for help, or an answer to the problem. (And before we go off on THAT tangent, I have tried limiting his liquid intake and waking him up in the middle of the night. We just end up with a thirsty kid who doesn't always go back to sleep.) Bed wetting is just one example of something that is a little harder for our kids to overcome, but it was the first example that popped in my head of a story that might be embarrassing to the average NT (neurotypical) kid. It means nothing to my child.

I also tell the true stories because there are lots of folks out there who have very misguided views on what life with autism might be like. There are the exhausting "Rain Man" references, (a movie character who wasn't even autistic...), the horror stories that are told in an effort to compel folks to open their wallets and change laws, (even if these stories make you sick, they are a necessary evil, because they make it possible for our kids to get help when they need it, so simmer down), and there are the beautifully painted rainbows and butterflies stories, that only emphasize the most positive and heart swelling moments we experience. And then there are the real life stories.

When I first logged onto Facebook and found other parents who were talking about some of what we were going through, I was elated!! I found people I could talk to who weren't judging me, or telling me I was wrong about everything. There were people who didn't second guess every, single fucking choice I made for my son. These people weren't calling me every time the news was about to report the latest "cause of autism" or the "latest autism treatment" (that we had tried, unsuccessfully four years earlier). These people just "got it". As I continued to interact with some of the public autism related pages, I began to realize that I had something helpful to say. So many of the parents I encountered were just starting out on this autism parenting path, and were struggling with so much of what I had already overcome. I realized I could make a positive difference. I had no idea how big a difference I would be making in my own life, and how many others would find comfort in what I had to say, but I knew I was meant to do this.

When I tell the stories of the hardships and the joys, (because I promise you, there are plenty of both), I am careful to consider the possible ways my son could be impacted by our public story. Believe me, I WISH I could ask his permission before discussing our private moments on such a public forum. But I can't. I am not trading my child's dignity for a chance at helping someone else. I am helping someone else feel less alone, offering solutions wherever I can, and hopefully educating those who have no clear understanding of the reality that some people would prefer to hide. Providing this reality to people who might otherwise have no way of knowing the truth is my way of clearing a path of greater understanding and acceptance for my boy, exactly as he is.

Now, there are some folks, who disagree. There are people who are high functioning autistic individuals who are offended when some parents tell the true story. I absolutely respect the right of these folks to object. I believe that if a child is able to understand the impact of their story being told, they should be included in the process of deciding what parts of the story are made public. At least, that's how I feel about my own contributions to the conversation. If I am telling about something relating to my older son, I discuss it with him. Even though my daughter is not on Facebook, and doesn't read anything I have to say, she is aware that I sometimes talk about how much she drives me crazy, and she thinks it's pretty funny. I chose from the very beginning to tell my story anonymously, because I DIDN'T want people in our personal circles to have the opportunity to think they knew us better than they actually did. I didn't want them to feel they had a deeper perspective from which to judge us, (and they WOULD). And I felt the need to protect everyone in the story, including my most vocal critic, who has thankfully exited the building:) Telling the truth and sharing a difficult story with people who can relate is a therapeutic and cathartic outlet. It is also life changing, and in some cases, life saving, to find someone with whom we can relate. It is never my intention to purposefully or thoughtlessly paint anyone in a negative light.

I understand how some of these folks who are offended can find fault with those of us who share our truth. I understand that by talking about the difficulties that some of us live with every day, the general public can be misunderstanding, and lump every autistic person under a single, umbrella category. To me, this is only another reason we HAVE TO speak up and tell the truth. There IS no umbrella category. When we say "If you've met one person with autism, you've met ONE person with autism", it is the truest and most accurate way to describe how very different and completely INDIVIDUAL each person with autism really is. By telling my story, it is NOT my intention to imply that EVERY person with autism experiences the same challenges as my child. It is simply my intention to find one other person who will read it and say, "Me too". I need that. They need that. Every person who ever struggles with ANY challenge needs to know there is someone out there who can say, "Me too". It is inherently human to NOT want to feel alone.

My own child will be dependent for the rest of his life. I don't say this as a complaint. It is simply a fact. He is a dependent, but he is NEVER a burden. Not to me. Not to his brother or his sister. It is my joy and my privilege to be his mother and to care for him until I take my last breath. I have had these conversations with my oldest and my youngest. They both understand and insist that their brother will always be loved and cared for, no matter what should ever happen to me. I ask them both, "But what if you marry someone who doesn't really want to be responsible for your autistic brother?" The answer I get from them both, "Why would I EVER marry someone who didn't completely accept that I am responsible for my brother?" I included this conversation here because it needs to be completely understood, no matter how difficult our days might sometimes be, my autistic child is loved, wanted and cherished every single day of his life. Every. Day.

Sometimes life with autism is hard. Sometimes it's really hard. But here's a newsflash: parenting EVERY child is hard. The hardships of autism aren't "worse"...they are different. The hardship of a challenge is relative to the capacity a parent has for facing that challenge. So my own level of strength might deem our challenges rather small in comparison to those of the more easily flustered parent of an average, NT child.

But I'm never trying to make a comparison. That's kind of the whole point.

The people who take offense to how I share my story are certainly free to express their opinion. I pray every day for the miracle that would allow my son to tell me he is upset by the sharing of our story. If that day should ever come, I'll be happy to explain to him how badly his mom needed to find these people who understood. I'll gladly tell him how many other parents were helped by the sharing of our experience. I'll be proud to tell him how many people were educated by the stories I told. And if he should choose to hate me for making these choices on his behalf, I will accept the consequences of my actions.

I know for a fact that sharing my story has helped people. I know it has helped ME. I am certain it has helped to shine a light that will illuminate a path for my son and others. If people choose to be offended by that, I'm sorry, but that's a choice they will have to live with. I don't disrespect your right to feel the way you do, so please don't crap all over mine.

For now, I'm just going to keep doing what I do, and pray the folks who need to hear my story will somehow find their way to it. The folks who are offended by what I share are free to NOT READ IT. And to anyone who finds their ANONYMOUS part in the story to be unpleasant, in the immortal words of Anne Lamott, "If people wanted you to write warmly about them, they should have behaved better".

Now I'm just going to light the campfire and we can all sing Kumbaya. Or you can leave my campsite. Eeny meeny.