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.

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 

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. 

Not Sorry

I've been blogging since K was a baby. At first, I was just a typical mommy blogger. I chronicled our daily trips to Target, playdates, and other inane things. I had no "cause" at the time, and so it served as a way to keep family updated when we lived in another state. After K was diagnosed, it slowly turned into an autism blog. I discovered Twitter, met a lot of other parents, and started blogging about life with an autistic child.

It was rough in the beginning. I wanted any other life but the one I'd been handed. I wanted a cure. I wanted my dreams back. I can't say I'm proud of the blogs I wrote those first few years, but I don't really regret them. They were my truth at the time. My blog connected me to a lot of fabulous people, with whom I developed good friendships even though we never physically met.

I won't lie. It was nice to commiserate with other parents about my daily struggles. To know I wasn't alone. To have a support system, when I felt like I was falling into the deep, dark pit. I was desperately trying to find my footing in this new, unexpected life, and social media helped.

From the beginning, I befriended other parents who weren't exactly like me. Who tried autism therapies and treatments that I did not. There was a time we were thisclose to going down the chelation road, but I read about a child dying from it, and quickly crossed it off our list. I knew there was a whole world of "stuff" out there, when it came to autism, and unless someone was downright abusing their kid, someone having a different path than us never bothered me.

We never did GFCF, but I had many friends who did. We never saw a DAN doctor, mostly because of the cost, and me wanting a "for sure" cure before going broke. But I knew people who said these types of treatments really helped their kids, and who was I to discount that (and because of B's medical issues, biomedical treatments are something I have thought about recently. Who doesn't want to ease their child's physical symptoms, related to autism or not?)

I knew people who did ABA and Floortime. Those who homeschooled, public schooled, and private schooled. I knew people who saw autism as a gift, and those who saw it as a curse. But I also saw parents as more than that. More than just their autism treatment plan. As people who listened, who cared, who were good friends. Their particular belief system didn't have to match up with mine in order for us to have a relationship.

For me, however, there are some things I just can't abide. There is a line I draw that separates parents trying to do right by their kids, and parents harming their kids. Certain treatments that can only be viewed as abusive, at least in my own mind. I think we all have that invisible line, that point where we shift in our seats and get uncomfortable. When we hear about a treatment where the risks seem to outweigh any benefit. Things tried by desperate parents, who will believe any snake oil salesman that comes along.

I get the desperation. I was there once, myself. But, I can't get behind blindly following someone who claims they can cure your child, without doing any actual research, or stopping to think if death is a side effect you can accept. And, obviously, murder is something for which I will never make an excuse. But I've made that clear on this blog before.

So there's a line, but up until that line I don't really care what you do. As long as you aren't harming your child, based on my personal opinion of harm, we can be friends. Unfortunately, this isn't true for everyone. I learned this lesson recently when I came up on the receiving end of the "blocked" function on Facebook.

Honestly, I am surprised I am not blocked more often. I don't mind giving my opinions on social media, or this blog, and that means there is always someone who might get offended. Someone who doesn't agree with me on a particular issue, and not being able to move past it hits the block button without a second thought.

But, even I don't block people, because if I blocked everyone I don't agree with (due to religious views, political views, or autism views), I would have very few, if any, friends. I always joke about how controversy is never ending on my personal Facebook page, but that's only because I have a diverse group of friends...who like to fight with one another. But what's life without diversity, right?

But, getting back to my point, there are some who unfortunately cannot handle when someone disagrees with them. I think that when you post something on Twitter or Facebook, or write a blog, you need to understand there will be those with different opinions. Being active on the internet means having a thick skin, especially if you are trying to parlay your internet presence into a career (I am not, and there are times my skin is very thin, but then blogging isn't my life/job, so it's not a big deal.)

I guess it just shocks me when someone decides they can only surround themselves with those who believe exactly as they do...about anything. Some of my closest friends differ in their opinions on autism (and many other things), but that's OK, because I see them for who they are...good people who have impacted my life in a positive way. Whose children I cheer for when they succeed. Whose shoulders I cry on when life gets rough. Whose friendships I value, even though we aren't the same person.

Life is too short and too precious. We are never going to agree on everything, no special needs community ever will, but we must be there for one another. Sure, we all have that line in the sand, but I think it's important to examine where that line rests. The last thing we need is another reason to fight.

So, am I sorry I got blocked? No. My true friends accept me for me, and understand we can be friends without being on the exact same page. For them, I am truly grateful.