To blog or not to blog....

Before I even started this blog I had reservations. Did I really want to put our lives out there in a blog for everyone to see? I thought about my immediate family and about what level of privacy is expected by our household. Will they be "ok" with the things I post about them, or would the mere idea of my random posts cause them to shutter? So....I asked them what they all thought about it. Without hesitation, everyone agreed and I got the "official" go-ahead. I guess I needed their blessings before I started pouring my heart out. I knew deep down in my soul that I wanted to put it out there, but I needed to consider my family first. The reality is that this blog is helping me to get my thoughts and feelings out. Maybe that's selfish. Writing is just so incredibly cathartic. It is for me anyway. Besides, if what I write helps to educate NTs, or helps someone affected by ASDs to feel less alone, then it’s all worth every bit of effort. The reality is that all-in-all, we have nothing to hide. Imperfect or not, our lives are what they are....our lives. A good friend of mine uses the saying, “it is what it is.” That’s so fitting here. This is our normal....normal or not. 

So, my hope is that you all find common-ground here, and that you feel a connection to our experience that empowers you to forge on, even on days that you may not want to. We’ve probably all been there at one time or another. I know my husband and I have. It’s just a matter of making things work for your family despite anyone's "well-meaning" input. There isn’t a handbook for this stuff. Our family has been making it up as we go since 'E’s initial diagnosis when he was almost three years old. As a family, we often deal with the glances and the silent judgement (silent if we’re lucky!) regarding E’s behavior when we’re out-and-about. I honestly don’t know if I’ll ever get used to that. While I realize that a stranger’s opinion doesn’t mean anything in the scheme of things, it’s still hard for me to let it go sometimes. Oftentimes I don’t. It’s my job as his mom to keep him save and sound, no matter what. I have to say that on more than one occasion I’ve resorted to telling someone that he’s Autistic in a not-so-nice tone, and then quickly asked them, “what’s your problem?” That generally shuts them down pretty quick. Maybe next time they’ll think before they’re so quick to pass judgement. That’s the thing with ASD kids, they don’t “look” any different than anyone else. People seem to assume that the child is just out-of-control due to bad parenting or lack of discipline. That’s my take on it anyway.

The reality is that I’m a work-in-progress with all of this stuff. E’s 15 years old now, and I still don’t have it figured out. He’s constantly evolving and changing right before my eyes, requiring me to change-up my responses and behaviors to help him fit into world that I can’t change for him, although I wish that I could. I truly hope that with continued education and advocacy by all of us in the Autism community, the world will accept my son and all he has to offer without criticism or judgement. As E’s mom, I can’t think of a better wish.

Trip to Ikea....

Today we went to Ikea to buy the kids new desk chairs. Their chairs broke a while back. Here’s a picture of 'E' testing one of the chairs.

He’s looking away from the camera. Pretty standard protocol really. I generally have to take an abundance of pictures to try and get one where he’s actually looking at me and not making a funny face. Oftentimes I end-up with a photo of a blur as he races by me. For taking photos of "moving targets" digital cameras great!

So....back to Ikea....after testing numerous chairs, we found one that met E's standards. It was cushy, soft, and had arm rests, which were all on E’s must-have list. The bad news....Ikea didn’t have the chair or the cover he wanted in stock. It didn’t help matters that the chair his brother picked-out was in the store, ready to go. No problem there. E actually took it pretty well. Although he was bummed that they didn’t have his chair, I think that he was so over being in Ikea (we were there for about two hours) that he was just ready to go. My guess is that just being able to leave the store (I was right there with him on that one) eased his disappointment. No meltdowns....no outbursts....no yelling at the salespeople that they “mocked him” or “teased him” by not having his chair "on purpose." We got away clean today. Whew! The bad news for me is that I’ll be out-and-about shopping for a chair for E again tomorrow while he enjoys his home-time. I guess the house cleaning and grocery shopping will have to wait. Oh darn.

Charlie Brown Thanksgiving....

I just wanted to post this photo of 'E' and Brad watching Charlie Brown Thanksgiving at my parent's house the evening of Thanksgiving. I've been reading all of the wonderful #youmightbeanautismparentif comments on Twitter. We literally watched the entire episode of Charlie Brown Thanksgiving at least five or six times. I'm sure if I asked E he would have an exact number. OK, I just asked him....without hesitation he said that we watched it five times total, but there were countless other views of the scene where Snoopy fights the beach chair. E loves that part so much that he acts it out along with the cartoon characters on TV. His performance is worthy of an Oscar nomination. Temple Grandin advocates that as parents we should help our ASD kids develop their natural obsessions/talents into careers. I may be blogging right now about a future movie star....or a video game designer....or a writer. Whatever his chosen career path may be, I’ll never forget the joy I had watching him act-out Charlie Brown Thanksgiving. I feel so truly so blessed to be E’s mom.

Thankful.....

I’m thankful for so much. First, I’m thankful for my wonderful husband Brad, who grounds me in every way possible. Without him I don’t know if I could make it. He’s truly the nicest, most kind, patient, and loving person I’ve ever met. I can’t explain it, but we just work. I feel so lucky to have found my soul mate. We’ve been married for 25 years now, and it just keeps getting better and better. Brad’s the Ying to my Yang, and for him, I’m forever grateful.

I’m thankful for my wonderful children. I’m so fortunate to be their mom. They both amaze me on a daily basis. I find joy in watching them grow into these amazing human beings. I’m thankful when I see 'D' laughing with his friends. He’s growing into this wonderful man right before my eyes. I’m thankful when I get to watch 'E' line up his plush dolls in front of the television or next to him in his bed. I’m feel like I’m the luckiest mom in the world to have them in my life. I wouldn’t change a single, solitary, thing.

I’m thankful for my family....on both sides. They support us with unconditional love and we appreciate that more than they’ll ever know. I’m so grateful to have grown-up in a loving household. I’m fortunate that the news of E’s diagnosis wasn’t met with resistance. There was no denial that I can remember. Only support. I’m truly grateful for our parents never-ending generosity.When we needed help, they were always there....for that I am grateful. I hope that Brad and I can be as giving to our boys throughout their lives, as our parents have been to us.

I'm thankful for my friends....especially my friends that "get" it. The friends that understand are usually the ones that have a direct relationship with Autism, meaning they have an Autistic child themselves, or they know someone that does. My friends know that it's not that we don't want to do things with them on a spur of the moment (or not), it's that we can't. E needs a certain amount of "home time." Our family is generally unable to "go, go, go" like a lot of people we know. For the friends that understand that, I'm truly thankful for your support and understanding.

I’m thankful for my career. Things weren’t always easy for us. For some unknown reason I had this innate desire to graduate from college. Sure, I fluttered around with it after high school, but I had no clear vision of what I wanted to do the next day, let alone what I wanted to do with the rest of my life. I got married young and eventually went back to school in my thirty's. Even though we have student loan debt to repay, I would never have the job I have without the loans we needed to make it through. For my education and my job, I am truly grateful.

These are some of the things I’m thankful for. 

I hope everyone is having a wonderful Thanksgiving holiday.

This Autism Thing....

'E' is 15 years old now. Where the hell were blogs when he was little? I had so much to say, and even more importantly, so much to ask. E was almost three years old when we heard the diagnosis....Autism. It hits you like a ton of bricks. We were never in denial that something was wrong. We knew there had to be something that was causing the crying, the fits of inconsolable rage, the apparent unhappiness of any situation we seemed to be in, even when it was an activity or place that we thought the kids would love....well, one of them anyway.

But hearing that your son is “Autistic” isn’t something that anyone can even try to understand unless you’ve been there to feel it for yourself. I will never forget the day....the room....the people in the room. Although I don’t remember their faces, I remember that moment. We think your son has Autism. Tears came. Tears of fear of the literal unknown. Brad and I left the appointment with our son....and a stack of papers....some to fill-out and lots to read. We knew nothing about this Autism-thing other than the movie Rainman like so many other parents of ASD kids. I don’t remember what we spoke about on our way home, but I remember thinking, what will happen to our precious son? And crying....me, not E. Not that I can remember anyway. Will he ever speak? Will he ever love us? Will he live a life of loneliness? There was so little information available back then compared to now. However, I don't think we're where we need to be regarding information and resources. I feel very strongly about that.

Before I finish writing tonight, I feel like I need to announce that we have two children. There was always that guilt thing hanging over my head like an anvil. In a way the anvil is still there....suspended above me ready to fall down onto me at any given time. It’s those random things you just think about, you know? How will we pay enough attention to our older son? What if he rebels for attention? How do we balance everything so that our older son doesn’t feel slighted. These are some of the thoughts that used to keep me up at night, especially when we were in the midst of numerous therapy visits each week, all the while dragging a NT child in and out of E's appointments. It’s like a balancing act and everyone and everything has to give a little to maintain the right balance so things don’t come crashing down.

Somehow or another it worked itself out. It’s still working out for us for the most part....we’re a work in progress. Trial and error. There’s no manual for this stuff. It is what it is and there’s no changing it or erasing it....there’s no going back. This is our normal. This is Our Autism Life....