Sunday, July 26, 2015

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, 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.


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.

Saturday, July 18, 2015

Dear Future Test Pilot,

I mentioned in a recent post that I was not opposed to someday finding love again. It's not among my greatest hopes and dreams. I won't set myself up for that kind of disappointment. Although, if it should stumble into my life, I'm not so arrogant as to turn my nose up at it. But because I have been so hurt, so many times, I think I can safely say, the road for the man who is unfortunate enough to be the one with whom I "test the waters" of romance, will not be an easy one.

I don't have any intention of signing up for any online dating sites. They may work for some folks, but I once had a friend who had quite a few horror stories, and more than one (or twenty) booty call incidences, and I really just have no interest in sifting through. If it's going to happen for me, it will happen the old fashioned way. Or not.

Since I won't be filling out a "dating profile", I thought I would put together a few guidelines so the poor soul won't have to go in completely on the blind:

1) If we are casually dating, (dinner, movies, a drink now and then), your privacy is all yours. The moment you think you might want an exclusive relationship, it's all cards on the table. No secrets. No lies. If you have a secret passcode on your phone, your computer, your tablet, or any other means of hiding shit, in my head, you are a sneaky, lying snake. It doesn't matter how much you're not. It's either full disclosure, or don't let the door hit ya where the Good Lord split ya. I know you shouldn't be punished for the sins of another man, but you will be. This is non-negotiable.

2) I had a life before I met you. If you are jealous of any part of that life, adios. I won't apologize or pretend it never happened. I'm not throwing out my wedding album or the video, because my daughter deserves to know that there was once a time when her parents were very much in love. And I deserve to have that memory as well. It was a beautiful time in my life, which is the reason it was all so painful when it ended so badly. That part is over, but it will always be a part of who I've become. It might be a source of irritation, but I promise you, that broken union is largely responsible for the confident, happy woman I am. However, if you are kind enough to build me a firepit, we can pull that giant wedding photo out from behind the wall unit, and roast marshmallows over it:)

3) I have kids. Don't let this point being number 3 fool you. This is the most important thing about me. You will never come before my children. Because I am a kickass mother, my children will always be respectful of you, and any place you may earn in my life, but I am their mother before I am anything. If that's a problem, Just. Don't. Even.

4) I have a big family. They are needy. They are a little off the wall. (Ok...a lot.) They are loud. (Although, I am probably the loudest.) I have said on numerous occasions, our family soundtrack is from Ringling Brothers. My mom has such an intense resting bitch face, you might flinch when she walks in the room. At least until she sees you treating me well. Should she pick up a different vibe from you, just run.

5) While all 3 of my kids are equally important to me, my oldest and youngest, have and will move away, respectively. My middle child is severely autistic, minimally verbal, and completely dependent. He will always be with me. There will never be an empty nest. There will never be romantic traveling in our golden years. My ex is probably someday going to be enjoying all the freedom that comes with an empty nest. He has most of the benefits of that now. I don't give a shit. My boy will be with me until I take my last breath. He's a good boy, most of the time, and entertains himself. But he's mine. I brought him into this world, and I will guide him through it until my body ceases to carry me.

6) Because my boy can't tell me what happens during the course of his day, I don't have any options for working full time. I don't have anyone I trust to care for him, I won't ask my daughter to give up her childhood to care for him, and I can't afford to pay for child care. If you enjoy a rich lifestyle, I won't be able to contribute to that fund. I love going out and having fun like anyone might. But I've learned to live without it.

7) Flowers are nice. But if you want to impress me, Beringers White Zinfandel. I don't want more expensive wine. I just want what I love.

8) I love Christmas. I love to decorate BIG!!! If you ever move me, wherever I live will depend on whether or not I can light up the front lawn like a landing strip for Santa and his team, If you are on board with helping me string lights around the free world so my house would shame Clark Griswold, we'll be good:)

9) I am a decent cook. Some things I make really well. Some things I will never get right. But I am tired. I appreciate surprise Chinese food.

10) I have internet friends. I love them. Really love them. If this is silly to you, just keep on walking. Their friendship is real. How I feel when I talk to them is real. How we hold each other up is real. Don't disrespect the people in the screen.

11) There may come a time when we choose to be intimate. This may be very tricky. I have pushed out three children, (the largest of whom was 9 pounds 10 ounces). I have reached a point in my life where sneezing has become a hazard. It has been a REALLY long time since any man has ventured down that road, and I'm relatively sure, opening that door would result in a dust storm of epic proportions. So between the faulty bladder and the possibility of Operation Desert Storm, you may need a raincoat, or a dust mask. Or both.

12) I am a part time blogger. If you are good to me, and prefer I keep the details of our (future) relationship out of the public eye, I can respect your wishes. If you are a douche, I will bury you. Not actually...I always remain within the confines of the law. But if you disrespect me, the story of you that I tell, will be truthful, and you will be sorry you were a douche. So don't be a douche.

As for the rest, you will have to figure it all out as we go. In one of those ancient mating rituals of asking questions. To my face.

And yes...all the above guidelines apply to me as well. Do unto others. And shit.

Tuesday, July 14, 2015

We've Been Poisoned By These Fairy Tales

I recently posted a picture on Facebook, of a frog (or toad) that chose to grace the wall outside my front door. I had some laughs with my friends, and we looked up the folklore concerning frogs among different cultures. There were also a lot of "Prince Charming" comments. Considering the fairy tales that most of us grew up watching and listening to, it was certainly a logical turn for the conversation to take.

My own "Prince Charming" tale led me to believe, WAY BEFORE the marriage was over, that Don Henley was SO VERY RIGHT, and we HAVE been poisoned by these fairy tales. We grew up being told by our parents, and our grandparents, and Walt Disney, that if we wish hard enough, and behave in JUST the right way, some day, our prince will come. Considering how many unions actually end badly, I think it's safe to say that a lot of us make mistakes. The "Prince" turns out to be not quite as "princely" as we had hoped, and many of the "princesses" don't hold up their end of the bargain either. But I will tell you my theory on exactly why these tragic endings occur. No matter how many relationships go the distance, those fortunate, "happily ever after" success stories don't happen because somebody was "Prince Charming". Want to know how I know?


There is NO SUCH THING as Prince Fucking Charming.

I wish I could describe to you how badly I want to shout that from the mountain tops!

There are LOTS of people who find love, and those couples will grow old together, and hold hands, and welcome children, and grandchildren. The very lucky ones will be around to share in the joy of great grandchildren. But there are lots of people who are NOT so lucky. I'm not even sure that "lucky" is the term I want to apply here, because some folks NEVER find a partner with whom they will share a life. Does that mean they have FAILED at life?

I follow a lot of Facebook pages that post uplifting and inspirational photos and quotes. I enjoy feeling uplifted by their positivity as opposed to only seeing the negative posts of all the "offended" Facebookers. I do my best to scroll past the petty and constantly complaining posts that will sometimes dominate my newsfeed. But lately, I find myself feeling perplexed by some of the posts that tend to have a "fairy tale" feel. There are suggestions that I "just haven't found him yet". Or "the love of your life is out there somewhere".

But what if he's not?

What if THIS is all there is?

What if I had my chance, and I blew it?

Ten years ago, the very idea that I might spend the rest of my life alone would have devastated me. I might've needed medication for the anxiety I would've felt at the idea of NOT growing old with "the love of my life". So much has changed since then, and I have to tell you, if nobody else ever comes along, THAT'S FUCKING FINE BY ME!!

I wish my parents would stop looking at me with sympathy. I wish my brothers would stop wracking their brains, trying to think of which of their single friends they want to fix me up with. I wish people would stop suggesting which online dating sites I should explore. Who wants to deal with that shit?!!

For the first time in my life, I am in charge of EVERY...SINGLE...THING I want to do. Finances (or lack, thereof) may dictate most of what I CAN'T do, but nobody else gets to tell me where I should go, what I should be doing, or what time I have to go home. I am seriously DRUNK with power over my own life right now.

I may be living on the balls of my ass at the moment, and as some people have suggested, it sure would be nice to meet someone who I could spend some time with, maybe go out once in a while to see a movie or go out for dinner, and who maybe wouldn't mind sharing the bills. But I have absolutely NO INTENTION of setting myself up on a mission to seek out some mystical "Prince Charming", so I can feel lost, lonely, and like I have somehow failed when it doesn't happen. Frankly, I think we fail ourselves when we put the responsibility of our future happiness in the hands of an IDEA of who we're supposed to end up with, as suggested by a cartoon. That's not fair. It's not fair to put that much pressure on a future partner, and it's surely not fair to set such an impossibly high bar for ourselves.

The reality is, I would love to be a part of a couple. It's been such a long time since I have FELT like a partner, the road has sometimes been really lonely. But walking this quiet road, with only my own thoughts and hopes to keep me company, I have learned something invaluable.

I LOVE myself.

It has taken me all of these 50+ years to realize that no one in my life could make me happy, because ONLY I can make that happen. When I finally stopped trying to be the person SOMEONE ELSE needed me to be, and learned to feel comfortable in exactly who I am, I finally learned what it was to be TRULY HAPPY.

If someday I should meet someone who doesn't mind dealing with all the crazy and dark places in my head that come from being hurt and betrayed, (and THAT will be the topic of my next post...), I'm certainly not closing my heart to the possibility of finding love again. But knowing with all my heart that there is no mythical being out there who will come and "save" me, and that the success of any future relationship will depend completely on an equal investment of dedication from TWO partners, gives me a better chance at succeeding in a future bond. But more importantly than that, I am perfectly content with my own company, and will never feel like I am somehow "less than", or "incomplete" because I am not half of a couple. I am COMPLETE, all by myself. Do you have any idea how freeing that realization is?

Now that I have reached a place on my life's journey where I am perfectly happy with who I am, and will never again feel like being single is the worst thing that could ever have happened to me, my only mission is to make sure my children know their own worth, and that THEY never feel like they are doing something "wrong" because their lives don't measure up to an archaic idea of "happily ever after". I have had a longtime ban on anything "Cinderella" in this house. It really doesn't matter though, because that same fantasy is endorsed in so many other components of life. Television, movies, music...all full of suggestions that "true love" is the answer to all of life's problems. I would say that was all wrong, except it isn't, because when we realize that true love of SELF is the key to finding happiness in this life, THAT'S when true love wins. Only then can we be successful in sharing ourselves on the way to "happily ever after" with another person. Or not. If I manage to successfully drill that into my kids, at the very least by setting an example of it, then I will someday die