Thursday, September 26, 2013

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


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.


  1. Crap. I just typed an awesome comment and then my internet hiccuped and I lost it. I'm going to try to remember it. If you get two comments from me, please us the first one. It was a lot better.

    I really sympathize with you on this particular post. Little Miss had to go through three evaluations before we found a doctor who recognized the subtleties of her behaviors as autism. Before that, we wandered aimlessly, knowing we needed help for our daughter but having no idea what that should be. My daughter also does not flap. She is verbal (although it has taken a lot of therapy to get there). She doesn't have special interests and she will engage with her peers (when she feels like it and under her conditions). But she does have autism. She is part of the spectrum.

    The thing I worry for most is that my daughter will have to continue to prove her need for supports. We fought quite a battle in preschool over a non-existant LRE and ended up choosing to pay a lot of money to create a true "least-restrictive environment" rather than let our daughter fail. It was worth every penny, but we can't afford to do that every time the school declares her "not autistic enough."

    The other thing I worry for is her sense of community. She's not neurotypical enough to pass under the radar and not autistic enough to be part of that group. For now, she seems content with the smaller community of her family, but when/if she wants more, I wonder how and which groups she will go toward -- or if she will remain an outsider in both.

    1. Fortunately, unfortunately, the older K has gotten, the more obvious it is she needs support. It's still easy for outsiders to not see anything right off the bat, but when it comes to school and therapy, there's no denying it. It's hard to be at this in between place, and think you are offending others by even saying your kid is autistic (I have had people tell me parents of HF kids often offend other parents, bc "we" just don't get how hard it can really be), but also needing support and community and friendships. I won't pretend to know everything everyone goes through, but it's nice to know people are there to listen and offer insight, regardless of how different your lives seem. Heck, it even goes along with the epilepsy stuff I deal with for Ben. I've found so many helpful people within the epilepsy community, who don't care if Ben has a "better" form of epilepsy that their kid, and I've talked to lots of people whose kids have never experienced all that grand mal goodness, and I still find them helpful. There's no "who has it worse" like there is with autism. There's just support.

      It's unfortunate there is almost a competition in the autism community, and it's really unfortunate some people feel the need to exaggerate so they can fit in better (it sucks when you meet someone in real life, and find that their life doesn't match up with everything you've read up until that point.) We are missing out on a lot because we can't just BE.

  2. my son is also somewhere in that particular area of the spectrum where he can be in phases that would make outsiders doubt he even has autism. you have to know him well and see the whole picture to see how it all comes together. like you, while i think we cannot compare our lives with those of parents (or autistics) that live with different forms of autism, there are enough problems that still do not allow our kids to thrive and 'high-function' in the world we live in. for that reason, i appreciate the input and exchange with all type of autistic advocates, where they currently sit or identify themselves on the spectrum. there are indeed certain members of the so called 'community' that have become caught up in an agenda or commercial exploitation of their children's situation (whatever they may be) and as much as i seek connection, those people i do not want or need to connect with, unfortunately, they often speak very loud and even pretend to speak for me or my son. You are definitely right though, connections are incredibly valuable to go forward and think forward with our children with regards to autism. with regards to everything, really. =)

    1. Anyone who wants to offer me insight, wherever they fall, I am all for hearing! I have been told that it's "offensive" when parents of HF kids try to relate to those whose kids wouldn't be considered HF, so it's a hard road to navigate. How do I NOT offend someone, while still offering support, or still being part of the community? I don't try to say I "get" it, and although it's cool to buck functioning labels these days, I'm not completely on board with that, just bc I am not going to pretend my life is the same of someone with a non-verbal 9yo, who is still not potty trained, or who has never uttered the words I Love You. I mean, sure, things can get tough here, but I won't pretend it's the same. I DON'T think, however, that means we have to divide into groups, depending on where our kids fall. And I don't think it means pretending we get all aspects of every autism. Being honest, being supportive, that's what helps a community to thrive.