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Diagnosis Day

As you know, I’ve submitted several of my blog pieces to The Mighty; when I submitted the last piece, along with the e-mail saying they were publishing the selected work, they sent a challenge. “If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?”  Fortunately, I’ve been blogging for quite a while and could go back and see the thoughts and feelings I was having during that particular period.

For us, diagnosis was not a surprise.  We’d long asked our pediatricians about Autism. Big Brudder was our first babe, but he was not our first experience being around children.  From the earliest moments, it was obvious he was different than other babies we’d been around. We thought a lot of the differences could be attributed to his cleft lip and palate, the fact that his mom and dad are both a bit quirky, and that he was an only child at that point. By the time he was three, I was certain that Big was on the spectrum, but he was already receiving speech and occupational therapy for food aversions and his cleft lip and palate.  We wouldn’t have added any other services, so I was comfortable with forging along with out diagnosis. I had found lots of online information regarding sensory processing disorder and found much help and comfort in learning.

Preschool came and went and he did well.  By kindergarten, I KNEW we had to do something, but he spent 45 days of that year sick and out of school.  In October of 2011, I spoke with the school psychologist for the first time and asked for a formal assessment. In December we received our formal diagnosis. I’ll never forget.  We took the boy out of his martial arts class, explaining to the teacher that we were going to take some time to focus on therapies again, but that we hoped at a later time we’d be back. I got my first apology for this diagnosis. I was no stranger to apologies;  after all, our son was also born with a birth difference. But this one hit me in the gut.

I took to the internet and finally joined Facebook! I expected to find community. Belonging. Moms welcoming me with open arms and warm hearts. On January 5, 2012 this is what I blogged:

“I don’t quite know what I expected when we received the asperger’s diagnosis. Perhaps, community? Understanding? Peace? I don’t know. It’s hard to feel part of a community when there is so much division and anger. One group says you aren’t autistic enough to be here…you don’t know our struggles. No I don’t. But, you don’t know our struggles, either. I mean this on the human level. How many of us know what it is like to walk in another’s shoes? None. Yes, my son is verbal. Yes, my son is gifted. But, you don’t see his ulcers from the anxiety he holds inside. You don’t see him when he has spent hisday struggling to contain stimms. You don’t see him when he is sad because he feels as if he has no friends. As HUMANS, we all want love and understanding. Because I speak of asperger’s it does not mean I do not want care about the autism spectrum at large. I do. I speak of what I know. Just as someone who writes about breast cancer doesn’t seek to diminish leukemia. We are all doing our best to navigate this world and form community. Perhaps, I look in the wring places. Perhaps community is closer than “message boards” websites and blogs. Perhaps, I need to forge a community of my own…”

Do you see that last sentence? “Perhaps, I need to forge a community of my own…”  That’s exactly what I did first by creating a closed Facebook group, which I still have. It is full of the most amazing, supportive, phenomenal women I’ve never known. We laugh at ourselves, whine, complain, cheer for each other and our children.  It is the single best Autism related thing I’ve ever done for myself. The second step, was starting the public Facebook page AutismInOurHouse.  I started by sharing my blog, which forced me to write in a new way, a more in-depth perspective.  By doing this, I’ve gained more insight into my thoughts.  The more I write them, the more I think about them and am able to sort and work through them. My final step into finding this community that has saved my life and my sanity more than once is writing our picture book.  In taking on this project, I’ve gained a larger circle of writer friends.  It began as networking – a way to grow my audience.  My oh my, it is so, so much more. It has just broadened my community.

Back to the original prompt:  If I could go back to diagnosis day, I’d tell myself, “Do exactly what you are feeling the NEED to do. Find your people.”  No matter the diagnosis one receives, no one understands like the people who are walking the same path. Even the same path has different pebbles and stones for each walker, but nothing replaces knowing the person you are talking to, even via private message on Facebook, “gets it.” Nothing. Go. Find your people.

findYourPeople

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What’s typical, anyway?

The WeeOne. Oh my. This child keeps me on my toes. Like a prima ballerina, I tell you. The other day on Facebook, I talked about his behavior leaving me reeling, wondering what in the world had just happened.  Here’s a little back story:

      Big and I had gone to the orthodontist, and Daddy picked up the WeeOne. WeeOne and Daddy arrived home minutes before Big and I.  We walk through the door thinking “Ahhhh.  It sure is good to be home.”  Immediately, WeeOne starts yelling about how Daddy was supposed to call me and tell me to pick up supplies for an extra credit project. (Side bar:  The project was received that day and isn’t due for ONE WEEK).  Admittedly, I lost my cool.  I was stressed from being in traffic in the city, from learning we have a few more months in braces, from life. When I regained my composure, the WeeOne and I discussed his project and came up with some really great ideas. Fast forward.

Yesterday, the WeeOne and I worked on and completed his project and man was this kid appreciative.  He said things like, “Mama, thank you for your help; you really helped me bring my ideas to life.” I told him, “When you’re sweet, there’s nothing sweeter.  When your’e mean, there’s nothing meaner.”  It’s true. I posted this reply to my dad on my Facebook page.  My dad says to me:  Like his mama. If you want to check the authenticity click here.  This is a true fact. For real.

This morning, I ask the WeeOne where are  your new glasses?  Remember, we just picked up the hipster glasses Monday? To see his adorable face click here. He says, “I must have left them at school.”  In I walk with the kids. Down the second grade hallway, to his classroom. I tell his teacher the situation, walk to the boys’ desk and am thrown back to second grade. This is MY desk. The papers. Oh-Em-Gee. The papers. Crumpled. Lots not his. Broken crayons. Pencils the size of his pinky finger. Food. What?!? They aren’t allowed to eat in the classrooms?? Stuff crammed in.  We take it ALL out. Children bring me a trash can at some point. We lay the papers out as smoothly as possible in piles that seem like some sort of organization. There were names in there that I’ve never even heard of. Papers from when his first teacher was there at the beginning of the year. But NO GLASSES! “What elective did you have yesterday.” I say.  Best Bud says, “PE, but he didn’t wear them in there.” OK. I tell WeeOne, “no worries. I’ll check the car one more time.”

Guess where the glasses were? In. The. Car. Yup.  I go back into the school. Get my badge. Walk them down.  Best bud says, “Where were they?”  I tell him, and his reply is:  That sounds about like WeeOne.

So, this is why I call him Neurotypical-ish. But, what’s typical, anyway?

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Did you know

That Pilates may kill you? Remember how I blogged about new year cliches? Well, in an effort to “become a healthier me” (read that in a sarcastic tone while rolling your eyes) I took a Pilates class on Tuesday with a friend of mine. Said friend is tiny. Like twelve year old tiny. She exercises her butt off, literally. She invited. I accepted.

About four years ago, I did Pilates at home every other day. I loved it. I was still fat (a girl’s gotta have queso) but I was firm and fit. So, I decided to give it the old New Years shot. We met at our local hospitals wellness center; it’s an affordable no long term contract option. When I arrived, I found old people everywhere. When I say old, I mean old. Really old. Like are you sure it’s safe for you to be on that eliptical I’m worried about your heart and your hip old. Turns out these old folks are badasses. They were wearing “street clothes” and not even sweating. I pay my fee, join my friend, lay out my yoga mat thinking, “this won’t be so bad.”

Wrong. So, so wrong.

I start strong. I’m cheering myself on thinking man, you’re not doing too bad. During one of the roll ups, I glanced in the giant mirror. The dreaded mirror they always have in one of those places. I was beet red, and drenched in sweat. That was mistake one. Mistake two was looking to my left. There was a seventy five year old woman in her street clothes doing these roll ups, not grunting, not sweating and doing it as if there was some invisible string just pulling her up.

Somewhere in there I saw some stars and may have lost consciousness. This is the first way Pilates is hazardous to
your health. You have to do these things AND breathe AT THE SAME TIME. What?!? I kept forgetting to breathe. But I finished and I didn’t die. Yay me. The second way it’s seriously hazardous to your health is that when you’re finished you’re all wobbly. It was sooo hard to drive home. It’s like when you’ve been jumping on a trampoline and you get back on solid ground. But I did it! I made it home. I felt proud and empowered. Today, I woke up sore-ish but nothing spectacular. As the day wore on the girdle God gave me (I’m sorry I have no idea what that group of muscles is called) those muscles that go around your stomach and back began to tighten. I decided to take a hot bath and soak for a bit. This is the final way Pilates is exceptionally dangerous to your health. I dipped my head under the water in an effort to stretch my back, the hot water creeping up slowly. I decided it was time to sit up. Y’all, for a few moments I thought I might drown. I thought, “THIS is how my husband will find me, and I will be remembered as the woman who Pilates killed.” But it didn’t y’all! I managed to sit up. Soak a bit longer. Mull around the idea of returning or not.

I’m 85% sure I’m going to give Pilates another chance to kill me tomorrow.

 

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New Year’s Cliches

A new year always brings the cliches of “reflection” and “moving forward.” I’m prey to those old cliches as much as the next fella’. Twenty-fourteen was overall a positive year.  As the hubs said, “Years that are evenly divisible by five have GOT to be good ones.”  I agree.

New Year’s Eve morning found me so in love with my oldest child. I couldn’t stop looking at him, marveling at his brown eyes and beautiful lashes, finding the smattering of freckles on his nose the most gorgeous sight. I found myself looking at his lip repair scar, reminiscing on the time ten years ago I was dreading handing him over to a surgeon for the first time.  I remember distinctly having friends with babies tell me how in love with their children they were.  I thought they were crazy. Now I know. I get it. I’ve been thinking on BigBrudder and his strides and gains over his ten short years.  I never call him an angel, because ten minutes with him and you’ll know he’s no angel.  I never call him perfect; that’s a tall order to live up to. But he IS pretty awesome. And amazing. And beautiful. As is his younger brother.

You know what, though? Their mama and daddy are pretty okay too. We’re good enough. You know that meme “Worlds Okayest Mom” ?  That suits me.  And I’m pretty okay with that. I’m a pretty good friend;  actually I’ll fight to the death for my friends so that’s a plus on my side.  Most days, well three of seven, I’m a pretty good wife. I let the small things bog me down, I’m a wreck at keeping our house tidy, I can’t be bothered with ironing, but I laugh at all his stupid jokes because they truly make me laugh. All in all, we’re pretty lucky.

This year, I have big plans.  Plans that may never see the actual light of day, but it feels good, really, really good, to work on something that isn’t driven by autism. It might have been born through the friendships I’ve made because of autism, but it’s not DRIVEN by it.  Stay tuned my friends, if I can let go of the worry of not doing it right, it’s gonna be awesome. Or not. But, it’s gonna be good enough.

xoxoxo

K