It Took My Breath Away

I've been going over it again and again. Reliving it. Feeling it. Letting the experience sink it, and trying to absorb just how big the moment was. Hoping, with every fiber of my being, it happens again.

I see the relationships other mothers have with their daughters, and I'd be lying if I said I didn't feel a twinge of jealousy at times. I love K, sometimes more than I think I can bear, but connecting with her in the deep way I see other girls connect with their mothers is just something I never thought would happen for us. I was "OK" with it. Maybe we don't have intimate conversations about life, and friends, and whatever else your average 10 year old concerns herself with, but we do have something really special, and for that I am grateful.

Then last night happened.

I had gone out with a friend, and when I got home I sat on the floor of our den to talk to my husband. On the floor because I have a raging case of "my shoulder hurts really bad", and he was doing his best to massage out the pain. It was almost 10 pm, and I thought both the kids were in bed, but after a few minutes K came downstairs...

She sat down in front of me, legs crisscrossed like mine. She placed her hands on my legs, looked me in the eye, and asked if I wanted to hear about something she had done on the computer.

Let me just stop for a second so that can sink it.

And for me to have a moment to close my eyes and relive it again. And catch my breath.

Usually, K dances or hops into whatever room I'm in, and launches straight into whatever she has come to share. Then, as quickly as she came, she's gone. Being still when she speaks is not something she does. Sitting with me, having a conversation, it's not something that happens. She's constantly moving, and jumping, and while I treasure the moments she chooses to share with me, sometimes I do fall victim to that twinge.

But last night...last night she really engaged with me. She anchored herself, hands on my legs, and connected. I asked a few questions. She answered. Sitting there, looking at me, going back and forth. I don't underestimate how much work those few minutes were for her. She stumbled over words, stopped to collect her thoughts, but stayed with me. The intimacy I felt in that moment with my daughter...I really can't put into words how it made me feel, or how it continues to make me feel today.

When she was finished, she stood up, but didn't run off like she usually does. She stood there, looking at me. She gave me a hug, and asked if she could sleep in my bed. Of course I obliged. I never wanted the moment to end.

It's hard to throw me. I live thinking I know what to expect from my kids, because there is a consistency in how they are, and I've made myself comfortable with it. I thought I had high expectations, but in reality there is so much I have crossed of the list. Things that don't even come to mind as possible. Things I'm not even aware could happen.

But now that I know better, and I'm excited to see what's next. There is something that will come next, another moment that takes my breath away. Now I know to wait for those, that they are possible, and that, well, there are no words for how that makes me feel.

We Don't Need to Live the Same Life to Feel Connected

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I think I've always been incredibly honest on my blog, about our life with autism. I don't have children who are considered "severe". If you met K and B, you might not see them as having any issues right off the bat. They don't flap. They have language (Ben has too much language...ha.) They don't toe walk, or look "stereotypically" autistic.

You'd probably notice B, first. Mostly because he rarely makes eye contact, and goes on and on and on and...well, you get it. He doesn't want to have back and forth conversations, but would prefer if you just listened to him talk about his interests all day. He can't be still. He is more stimmy than K, but it can just look like he moves a lot. People don't realize stimming doesn't begin and end with flapping. I even know some profoundly autistic individuals who don't flap.

It might take a bit for you to really notice that anything is going on with K. She's very quiet, and doesn't say much. She has very restricted interests, but won't go on and on like her brother. She speaks when she has something to say, and is plenty verbal, but isn't going to have a random conversation with you. Her speech can slow down significantly the more she talks, and it is something that frustrates her a lot. Sometimes she'll be excited, and share something with you, but she's definitely not the same as your typical 9 1/2 year old girl.

K is also my jumper. When she's excited, or anxious, she jumps. She's been known to make fists, over and over, for no particular reason. Sometimes she rubs her stomach, up and down, as a way to calm herself. Again, nothing you would point at and immediately say, AUTISM, unless you spent more time with her, and saw all the pieces come together.

K is also the child who "spaces out", more. Who sometimes doesn't seem quite with it. It can look like she's just not paying attention, daydreaming, or being rude. It's not any of those things. It's just her brand of autism.

When it comes to play, K is my stereotypical autistic kid. She just doesn't do it. Never has. It used to bother me, but it doesn't anymore. If lining up all her stuffed animals makes her happy, so be it. If having collections of toys, instead of actually playing with them, floats her boat, great! She'll be 10 in a few months, and has recently become interested in My Little Pony. I'll get her a few, and be happy she's not into typical "tween" things, because My Little Pony is much better than Justin Beiber (or insert any awful boy band/tween show/fad, here.) Although, since Netflix has a plethora of said tween shows, you are likely to hear K script a line here and there, or notice an attitude eerily similar to one of the characters. You'd probably just think she was being a typical girl her age, but she's isn't.

For the most part, my kids aren't scripters, though. K used to be, but not so much now. Sure, B will make me play out an episode of Spongebob with him, or ask me "What time is it" from Bubble Guppies 100 times a day, but I don't see that as scripting. They have language, they use it, and sometimes kids just like to repeat their favorite shows. Heck, I know typical adults who do that!

B is less stereotypical when it comes to play. He loves to play. He was coming up with really involved play scenarios at 2. Of course, you can only play what he comes up with, and don't even bother trying to insert your own ideas. During his neuropsych testing, he actually put his hands up and told the tester to not come play with him, because she would just mess things up. He has an amazing imagination, and sometimes what he wants to do isn't on par with what his peers want to do. He prefers older kids, because of this. It's cool having a kid who actually plays, though. I'll take it! 

Both kids are easily frustrated. Both have meltdowns that can look alot like they are just bratty, spoiled, kids. Those who are only familiar with the severe forms of autism, wouldn't guess there was something deeper going on. Over the years I've learned to not let looks and comments get to me. Doesn't mean it's not still hard dragging a screaming kid out of Target, but I won't be the mother yelling at people because they give us looks. People like that aren't worth my time.

They both have sensory issues, although B is much more severe. He has a lot of tactile issues, and still has trouble being independent with things like tooth brushing and toileting, because of these issues. Do not dare put something sticky on his hands, because he will take you out trying to get to a sink. We went through a period of handwashing that left his hands bloody and dry, but thankfully that has eased up a bit. I used to be the only parent at preschool pick up not handed an art project, because B refused to even touch a paintbrush, lest a dot of paint get on him, and don't even get started on glue.

K almost "under feels" things, so clothing and stickiness, or how tight/loose something is, doesn't affect her like it does B. She is more a seeker in that way, where she could roll around in sand for hours, or cover herself with shaving cream and feel great. She cannot stand crowds or loud noise, though, and will let everyone around her know when things aren't OK! She has more anxiety than B, and is less able to wait, too. It's a mixed bag.

Sometimes it's hard having kids who aren't the stereotypes people look for (although, I think Ben screams Aspergers pretty loudly these days.) Sometimes I feel like I don't belong in the "club", or others don't think I belong. Sometimes I can't relate to the struggles other parents have, as I'm sure they can't always relate to mine. I'll admit when I don't understand, though. I don't try to make it seem like I get all aspects of autism. I don't.

You won't find me exaggerating how affected my kids are, just so I can relate. I mention this because there are people who take great liberties with what autism looks like in their families. Probably because if they told the truth, they'd lose their main audience. I know people like this. It bothers me a lot, but I am not the autism police. I'm not here to rat people out, or question intentions. I just wanted to be clear that I am not one of them. What you see is what you get.

Why did I write this blog? Because I want you, my reader(s) to really understand our life on the spectrum. I want you to know that I get if there are times you shake your fist at me, and say I just don't get it. I am sure sometimes I don't. There are things I am an expert in, but I wouldn't call myself an expert in autism. Just our particular brand(s).

But, I am here to listen. I'm here to laugh and cry and celebrate and curse the gods with you. I might not live your life, but I can be be the shoulder you need when things aren't going so well. We're all humans, we all have compassion. At least we all should.

I recently updated my about page, and added my email address. I loathe the (somewhat) anonymous nature of this blog, and I miss the days when people emailed me, and connected on a more personal level. Especially in this day and age, when not having someone to listen can kick off a trip to a really dark place.

We might come from very different worlds, but it doesn't mean we can't be each other's rocks. That really is what community, or "a village" should be about. I don't blog for followers or popularity (good thing, eh!), I blog to make connections. I want to start doing that more. It's what I miss about my old style of "wide-open" blogging, the most.