The Middle

I don't believe vaccines cause autism, but I also don't consider autism a gift. I fall somewhere in the middle. A place where killing your autistic child is always, without excuse, WRONG, and a place where trying to force all parents to believe that autism is just a difference in neurology is also wrong. I sit in this middle chunk of belief, where hate doesn't exist, because these are our kids, and it just can't, but where the struggles are real. For both parent and child (I know, I know, parents don't matter, except they do.)

Sometimes I find myself skating the thin line between two extremes. Mostly because I have friends on both sides. People I love and admire, even if we don't always agree. Sometimes when I speak up about my own beliefs, I end up feeling guilty, because I truly never want to offend anyone. I hate thinking people are angry with me, to a fault.

However, because I try to avoid taking a side on some things, or immediately try to soothe someone I offend, I lose my own voice in the process. I've realized that as much as I try to appease those around me, this action isn't always reciprocal. If someone doesn't care about losing me as a friend, why should I bend over backwards keeping them happy? Because, honestly, when you're the only one trying to keep the peace, well, jokes on you, right?

Of course, there are things from which I don't back down, even now. Murder. Restraints/Seclusion. Abusive therapies. I just need to learn how not to back down on everything I believe. If I lose friends, I lose friends, but hopefully I'll gain respect, too. And confidence in myself.

Holding My Breath

Have you ever read blog posts, or heard stories, about cute little autistic children who are beloved by their classmates? Who are fully integrated, and have no problems at all because other children just flock to them? How they are teaching the world about diversity, and how every person who meets them just oozes love, respect, and acceptance?

Have you ever unfollowed a Facebook page, or Twitter account, because you couldn't take one.more.second of this shiny happy world you know nothing about?

Yeah, me too.

This week K started in a new social group. Now, I don't love social groups. I think autistic children are who they are, and trying to teach them to be different can be very detrimental. But, this group is all girls, and run by the K's counselor whom I do love.

And did I mention it's all girls?

K has been struggling lately with wanting friends, but unfortunately she's not one of the lucky few who acts as the Pied Piper of typical children. For the most part, other kids think she's weird, or excessively naughty, and just someone they don't want to be around.

So, when a spot opened up in "girl group", we decided to give it a chance. Especially because one of the girls is really into My Little Pony, and K has recently gotten into My Little Pony (some say obsession, I say she just likes ponies.) They even watch My Little Pony videos on YouTube, because I guess there are one or two ponies with disabilities (the girls can relate to the ponies, and hopefully it builds their own self-worth.)

At the end of group, K walked out and handed me a sheet of paper. It was a birthday invitation. My first thought was that we obviously couldn't attend. This was K's first day in the group, and getting an invitation was just a formality. It would be weird if we went, not knowing the girl, or the parents.

Of course, K was excited about the invitation. It's not like she gets them often. Not from people outside our circle of "family friends". And she didn't get at all why I thought we shouldn't go. At all. To her, this girl was a "friend", now. Clearly she should be at her birthday party.

So this morning I stepped out of my comfort zone, and emailed the dad. I told him K would love to come, but since the girls just met I wanted to make sure it was really OK. I'm guessing (hoping) these parents understand how getting a birthday invitation is akin to winning the lottery.

So here I sit, waiting on an email back. Feeling guilty that I even asked if it was OK for K to come, but also desperately wanting her to feel included. K will never be the cute autistic kid everyone flocks to, but maybe she will be someone a few other kids want at their birthday party, and that really is enough.

It Takes a Village, but Actually...

Yesterday was a rough morning for K. I don't know why, exactly. Tiredness, 9yo girl hormones, something else? Maybe all three? She just started out a little off when I woke her up for dance. I gave her the option of staying home, but she wanted to go. Part of me wanted to talk her into staying home, especially because dance is an hour away, but I left the decision to her. I figured she'd have some iPad time on the way there, and maybe things would turn around.

They didn't.

K went into her class, but didn't participate. I figured that was OK. She was sitting, fiddling with her bracelet, and I thought maybe she was working through something. I hoped she'd start feeling better, and it would be business as usual.

But then she started crying, so I decided it was time for a break. We found a quiet corner, and she burst out in tears. Seeing her like this breaks my heart. Especially because I have no clue how to help her, or even why she is sad. K goes through this a lot, and when she gets this upset she starts pulling to the surface every negative feeling she has.

I stood there hugging her, trying to hold back my own tears. I told her we could just go home, but, again, she wanted to stay. Maybe I should have made the decision to leave, but she's going to be 10 in a few months, and I really want her to feel that she has some control over her own life.

We stayed in our quiet corner for a few minutes, and K went back to class. Things were a little better, and she started to participate a bit, but I could tell she was still struggling.

So was I.

I sat in the small stairwell facing the studio, watching my girl, feeling so alone. All the other parents were talking with one another. Laughing. Socializing. Their children were fine. They weren't sitting on pins and needles, hoping to see just one smile from their kid.

I sat there wondering if I made the right decision, letting K go back class. I sat there wondering what was really going on, and how I could help. I sat there wondering why my child has to deal with such anxiety she can't allow herself to have fun. Because that's what fuels days like this...constant, debilitating, anxiety.

I sat on the stairs, resisting the urge to cry, while life went on around me. I was at a dance class for autistic children, yet I felt no different from when K had tried typical dance classes. Like there was no one else there who understood. No one I could talk to. No other parents holding their breath. It was just a given their kids would have fun, be happy, be OK.

One thing that got me through was watching another little girl try to get K to participate time and again. She would take K's hand, or go over and talk to K while trying to pull her gently towards the group. The good thing about a class for autistic children is that there is no judgement on the part of the kids. No one was looking at K like there was something wrong with her. It was really hard to hold back tears, watching another student try so hard to include my child.

My daughter does have a village. It's a village of her peers. Children like her who don't judge, and who truly want her around. For that, I am grateful. So very grateful.

But as much as we talk about parents needing support, can we truly say that village exists? We are adults, and it's no one's responsibility to come take our hand. We all have our own little group of friends, but do we ever consider those on the outside? Those who could use some extra support? Or are we incapable of reaching out? Really forming the support system every blog, status update, and tweet, tells us is essential?

Could we take a lesson from those children who see someone having a rough time, and instinctively reach out? I think we all know the answer to that question.

The thing is, sitting on some stairs alone isn't going to send me down the rabbit hole. But, I am sure there are parents who are thisclose to the edge, and who is there to help them?

A village isn't really a village if it acts more like a clique. If we truly want to help parents in crisis, we have to be aware when someone is struggling right beside us. When K was struggling yesterday, someone saw that, and surrounded her with love. Didn't give up. Just kept taking her hand. And you know what? She made K smile. She made her feel just a little bit better, which to me is nothing short of a miracle.

It's always a gift when our children show us the way.

I'm not writing this because I am angry at the other parents from dance. That's not my point at all. Sitting there alone was hard, but for me it's not a big deal. I also know I've probably missed opportunities to be there for others. I am writing this because it brought to the surface the fact that we as a community always talk about reaching out when we see someone in pain, but how often does it really happen?

One day there might be a parent sitting on those stairs, so close to that rabbit hole, who really needs support. Who needs an invitation for a night out. Who needs someone to just sit and listen. The question is, are you ready to offer that support, even to someone you don't know? When you talk about a village, are your words empty? Meant just for those you already call friends?

Thankfully, K's class ended on a high note when she received a light up wand to take home (sometimes it's the little things), and seeing my child happy was all it took to make me feel better. I learned a lot, though, watching the interaction between my daughter and her classmate. I realized I don't want to just talk the talk. That I need to keep my eyes open for those who are struggling, and that words on a page are just words until you put them into action.

Light up wands make everything better. 

Gratitude

These past two weeks have been hard. It might get harder. But what's made everything a little bit better are the friends who have been there for me. Friendship isn't measured by material things, but by kind words, advice, and patience. These things have overflowed from people I know in real life, and in my little cyber-village. I cannot find words to express how grateful I am to have people who truly care. Who have spent their own, valuable time helping me through. Who leave comments, and send messages, and let me know we're not alone in this. Who offer to hang out and just talk. Who've put aside their own worries to make sure we're OK.

Sometimes, I get stuck in the "why me" of it all. What did I do so wrong that it sometimes seems we live Murphy's Law? But, really, I must have done something right to have such a great support system. Such positive, loving people in my life.

So, thank you. You've taught me about true friendship these past couple of weeks. I am forever grateful.

Bittersweet

My Facebook status from Thursday night:

We were at the town carnival tonight, and K saw a girl from her mainstream, 3rd grade class (where she started out the year). They hung out, talked, and went on all the rides together. And my heart broke a little, bc I wish she could be successful in the mainstream. I wish she could be in her old class, with kids who truly did love her. 

So close, yet so far...

Thursday night we took the kids to the town carnival. They had been setting it up for a week, and B especially couldn't wait to go (as in it was all he could talk about at home and school). It was wristband night, meaning for $15 the kids could ride as many rides, as many times as they wanted, which saved us a ton of money (I loathe carnival tickets).

We weren't there very long when a girl from K's original 3rd grade class saw her, and came running over. She was so excited to see K. This was the little girl who would always be holding K's hand, or trying to involve her. You know, that "mother hen" you always hear about. She would annoy K at times, but I was glad there was someone pushing her "in" to the group.

I felt a little nostalgic for the good ol' days (that really weren't so "good"), but it wasn't bad. I was glad K got to say hi to an old friend.

A while later, while on the swings, K met up with another girl from that same class. The little girl sat next to K, and the whole time the swings were swirling around, they talked. I don't know about what. I think some of it was about where K went to school now. I saw a lot of gesturing and smiling. It made my heart happy that there were kids who truly missed my girl, since this year was the year some had started to not be so accepting.

Once the swing ride ended, they stayed together. For the rest of our time there, they rode all the rides side by side, and had a great time. I followed behind, watching. Giving my girl space to just be a 9yo kid with a friend. Occasionally she'd walk over and snuggle into me, then run off again, happy and content.

It was awesome that K had such a "typical" experience at the carnival. Going on rides with another girl her age. Being more independent. Just being a kid. Except, my heart was breaking a bit. I had to hold back tears at times, even. Ridiculous, right?

The thing is, it made me sad that K couldn't be in that class with that little girl, anymore. That as great as the night was going, school never went that well. It was easy to forget, for a second, just how bad it was, wondering why it couldn't work out. But, oh, how it couldn't work out.

And I just wish, with all of my being, it could. I wish she could see these girls everyday. Ride the bus to school. Be in the regular 3rd grade class. I wish that inclusion had worked for my child. Sometimes it's so hard to reconcile the 9yo I saw last night, with the girl who is now at a private, special education school. For whom the mainstream was an absolute nightmare.

Hanging out 1:1 at a carnival is fine. Unfortunately, life isn't about hanging out 1:1 with a friend, doing something fun, all the time. I had to remind myself of the context, and not fool myself into believing maybe things weren't as bad as they were, because they were. Even the school admitted to that. And they'd be just as bad again, if we dared attempt inclusion (which, no).

I felt so much joy last night, watching K run around, laughing, smiling, growing up before my eyes. But, I also felt that sting of knowing it was just for the night, and tomorrow we would be back to reality. That little girl would go back to 3rd grade at our neighborhood elementary, and K would take an hour and a half van ride to her own school.

So close, and yet so far away. Story of K's life. But, I'll hold onto the positives, and hope they happen again.

Soon.

K (right), with her friend.