Sunday, March 30, 2014

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.

Friday, March 14, 2014

It's Not Easy Being...Pink.

It's lonely when you have a girl on the autism spectrum. The majority of parents you meet have sons that are diagnosed, and girls can present such different issues. I have met so many great parents online, whose daughters seem very similar to K, but they are never local. Facebook and Twitter are great, but sometimes you just want that "come have a coffee with me" connection. Sometimes your kid just wants a play date (and not with the boys she's been surrounded with at therapy since she was 18 mo old.) I long to sit in my kitchen, talking to another mom about the scary thing that is puberty. About school, friendships, the future. About how sometimes our kids just seem like little girls, and other times seem to struggle so mightily because of their neurology. About how to respect them as they grow into women, and make sure they are supported the right way, not the generic "only boys have autism" way.

I've found that parents of girls on the spectrum are exceedingly protective. They tend to coddle their children more than those with boys. For me, I have a 10 yo daughter, and I treat her like I would any 10 yo. Sure, sometimes things are different, but I don't walk into any given situation assuming K can't handle it because of autism. I just assume she can handle it, and have a Plan B if she can't. I don't find that with many other girls, and so as much as I am left alone, so is K. Other parents are unwilling to lengthen the leash they've (figuratively) attached to their child, because all they see are the struggles, and they are so scared of failure, they don't even let their child try.

Now, for years we were OK hanging with the boys. Like I said, K has been surrounded by boys on the spectrum since she began Early Intervention at 18 months old. She never cared much that there were only boys, until recently. A few months ago she decided she wanted play dates exclusively with girls, which is a difficult order to fill when you don't really know any. I'm thankful for my friends, who have daughters K's age, who are able to help fulfill something like K's birthday sleepover request.  But, those other girls are typical, and sometimes get annoyed with K. What I'd love are other girls on the spectrum who aren't going to eventually push her away because she's just too different. Who might share some of K's interests. Or who might be OK going off in different directions during a play date, because they still know they're friends.

Really, it's just nice to be around your own people. Everyone is like that. We gravitate towards others like us, and I want K to be able to gravitate, not have me put her somewhere. I want her relationships to be natural, not only set up my mom.

But, yeah, hard when K's people live thousands of miles away, or their parents shy away from letting them do much of anything.  

The one bright spot in all this is that a new girl has started in K's class at school. A girl her age, with a lot of the same interests. Who is just as excited about having a new friend as K (although I might be more excited than both of them, combined.) They have their first play date on Sunday, and even though they live an hour away, it doesn't matter. It's rare K finds her people, and an hour is nothing. I'd gladly drive that every week, so she could be with her friend. A friend she's made, not one I've found for her.

Her people.

Hopefully, as time goes on, other parents who have daughters on the spectrum will be more willing to let go. Their children won't be alone. Other girls like K can't wait to meet them, and other parents like me always have an open kitchen, a cup of coffee, and time to talk.

Sunday, March 2, 2014

I Don't Want You To Think My Kids Are Awesome

I see a lot of it around the Internet, people fawning over kids with disabilities because they are disabled. Because they don't know what else to say, since clearly a disabled child has nothing much to offer. That because these kids face challenges in life, the only things that can ever be said are over-the-top, candy-coated, and superficial. As though nothing deeper exists beneath the surface. Under that expertly posed, or not, cute kid photo. Descriptions of their hi-jinks the child never meant to be funny, but is used that way, anyhow. It's condescending. It makes these kids into nothing more than a marketing ploy for a blog post. Click-bait.

That's not to say our kids aren't fabulously beautiful creatures, but I would never want either of mine to be viewed as only that. I don't want my kids to be "awesome" when they do the most mundane things. That means expectations are low, and that's not OK. I don't want people patronizing my children by calling them geniuses, or special, or amazing, when they do something any other kid their age does. Being autistic doesn't mean they are incapable of even the simplest things. It doesn't mean they need to be fawned over like babies. Besides it being disingenuous, it teaches them that no matter what they do, they're perfect little people who can do no wrong. That the world revolves around them. That they should expect high praise every time they accomplish even the most trivial task, or have an independent thought. Sure, progress is always great, and celebrating new achievements is not a bad thing, but there is such a thing as going overboard. It's about respect. Presuming they know everything that is said, and goes on, around them.

I want more for my kids. I want them to be seen as whole people. As capable people. As individuals who will accomplish great things in life, surprising no one. Their paths might be a bit different, but they should be treated the same as their peers, with an attitude of "I knew you could do it!", and not,"Omigosh, you actually did it???"

My kids are awesome, because they are pretty cool people. Not because they are autistic and so they have to be, because it's a nice thing to say. Or because the bar is set so low, anything they do is a miracle. That's the opposite of how they should be viewed. I want them to grow up knowing they have to work hard, like anyone else. That they can achieve their goals. I want the accolades they receive to be well deserved because of their abilities, not their disability. Sure, each kid is different, and each child takes their own, unique path, but how we treat them along their journey is important. Treating them like you would anyone else, as much as possible, is the best gift you can give.

Saturday, March 1, 2014

Best Friends

This week a new girl started in K's class.

That's right. A girl. 

Her own age.

Who shares common interests.

In all the programs we toured, we saw one girl K's age, but unfortunately that particular program wasn't a good fit. I would be lying if I said I didn't consider trying it out just so she could have a friend, though.

This new girl visited K's school twice, and I held my breath waiting to hear if she would become a student. When I received an email confirming her acceptance (the school sends up a heads up whenever a new child joins a class), I was elated.

When I had spoken to K about the possibility of this girl being in her class, she told me they would be best friends, and she would buy one of those best friend necklaces she saw at the mall. She was so earnest and matter-of-fact about it. Her innocence in how friendships are formed and kept is something I love about her, but the potential for heartbreak is not lost on me.

Yes, K and this new girl like some of the same things, like unicorns, and My Little Pony. But, this is also a special education school, and all kids come with a certain amount of trauma, or bad experiences, from previous placements. In her mind, K had already decided that they will be BFF's (best friends forever), and I hope she isn't disappointed. What she knows about friendship, in general, she has learned mostly from television shows. They are how she planned her first real sleepover, and they are how she has formed views on friendship. Mix those expectations with the expectation that everything will be immediate, and I worry what might happen. Especially if the new girl has a lot to work through, and isn't up for the instant BFF status K desires.

I am trying to stay positive, though. Even though these are two girls with a myriad of challenges, they absolutely can forge a path to true friendship. At the core, they are 10 year old girls (the new girl might be a year younger), and I always wants to have the same expectations I would for any 10 year old. Why not? Maybe things will look a bit different for them, but I respect my daughter enough to not baby her, or just assume things won't work out. I never want to underestimate anyone based on diagnosis, and I know there's always more than meets the eye. They both deserve to finally be accepted, feel safe, loved, and feel worthy of that BFF necklace.

Below are lyrics to a song I performed with 2 friends in an elementary school talent show :) 


Best friends should be together, 
That’s how it ought to be, 
So let’s pretend I’m part of you, 
And you are part of me. 

If I were a little shoe, 
I could be your heel, 
If I were a little pig, 
I could be your squeal. 

If I were a little peach, 
I could be the fuzz 
If I were a bumble bee, 
I could be your buzz. 

Best friends should be together, 
That’s how it ought to be, 
So let’s pretend I’m part of you, 
And you are part of me. 

If I were an elephant, 
I could be your trunk, 
If I were a chocolate cake, 
I would be a hunk. 

If I were a picture, 
I would be your frame, 
But if I were nothing, 
I’d like you just the same. 

Best friends should be together, 
That’s how it ought to be, 
So let’s pretend I’m part of you, 
And you are part of me.