Category: Creigh's Updates

A Piece of My Heart

6/5/2014

As most of you know, I am a caregiver for an autistic child and, to a lesser extent time-wise, his neurotypical sibling. As others of you know, I'm going to start a Master's program in Speech Language Pathology in the Fall (with a grant to get autism specific training). What you may not know, however, is that starting this Master's program in a different city necessitates that I leave my job as a caregiver.

And knowing I'm going to leave in less than two months (in fact, tonight I'm going to help look for someone to replace me), I find myself relishing the little moments with more intensity. Watching him squeal with glee at the sensory beauty of the water park, or asking me to chase him around the room and tickle him, or his surprise attack raspberries, or story time (scripting) in the car.

I'm going to miss this, you guys. When I leave, I'm going to leave a piece of my heart behind* - not only with him, but with his entire family and with all the other amazing children I've cared for here. And it's going to hurt. But in the meanwhile, I'm going to keep relishing what time I have left.

-Creigh

*Yes, Mom, you can say "I told you so!"

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A Sister Team

5/24/2014

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Originally published 5/18/2014

I am so very blessed to be part of a sibling relationship which is so close and where we so get each other. Caley gets melty* sometimes, and I don't take it personally when she acts differently from the way she normally does as a result. It's not her feelings towards me, it's just her reacting to the situation, and I honestly don't think twice about it.

Today Caley reminded me that this goes both ways. I am an introvert. I love being around people, particularly in a caregiver or teacher role, but I REALLY need my alone time, too. Recently, I haven't been getting that. Between working six days a week and other responsibilities, I'm always around people. I love the job, mind you, but as a caregiver I am definitely never alone. Add to that the fact that Caley and I are sharing one small room over the summer...and my much needed alone time is an artifact of the past.

As a result, I've noticed myself getting rather snappish lately sometimes when Caley tries to interact with me after I get home. Normally I like talking to her and hanging out with her, but now when I'm home when I finally get some peace, I feel like Gollum**, jealously guarding my treasure. It's not conscious and I pretty immediately realize I'm acting out of character and apologize, but it happens. And every time it does, I feel absolutely terribly guilty, so I push back down my feelings with an added dose of guilt. The guilt was even worse because Caley's very sensitive to others' emotions, and if she thinks someone's angry with her it leaves her very frightened.

Finally, I figured out what was going on and I pulled Caley aside for an even bigger apology than the previous far too many to count. It wasn't her fault, I told her, I just wasn't getting alone time and I was really really super sorry for how I'd been acting. I was particularly sorry, I said, because of how I knew I was making her feel upset when I got snappish.

And you know what she told me? She told me to please stop apologizing, that I understood it when she got frustrated with me when she was melty, and she understands that in the same way it's not personal when I do the same thing. She told me the only thing that bothered her was that she worried something was wrong since it's uncharacteristic for me to act that way. (But she knew nothing was too terribly wrong, because apparently I act very calm when terrible things happen. If I was calm, she said, she would have been nervous. I'd never even noticed that about myself before!)

So there we go. Guilt, gone. And I have a plan to get myself more alone time, too. (Which mainly has involved actually telling people no when they want me to do something for them.) So the problem should be taken care of. But something good came out of it - a reminder that Caley gets me as much as I get her. We're a good team, and I'm glad she's there for me through thick and thin - I'm more than happy to return the favor. I love you, chica.

Also, parents of the world, for whom the alone-time-less scenario I described is not out of the norm, but part of daily life, know that I have a very deep sense of respect for you!

-Creigh

*Melty is the term I have deemed the stage pre-meltdown...where you're at risk for melting, but haven't quite reached the full thing yet.

**She read the bit about being like Gollum and told me, mid hug, that I was the best Gollum ever. She assures me this is a compliment, because "Gollum isn't awesome. And you're awesome. Therefore you're the best Gollum ever." Not sure if I quite follow the logic, but hey. Also, I have the best sister ever.

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ASE's One Year Anniversary!

4/1/2014

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Originally published 3/9/14

One year ago today, Autism Spectrum Explained was published. At that point, there were just a few articles and the only readers were a handful of family and friends. Today there are seventeen articles (and eight more almost ready for publishing) and visitors from all over the world. I think what I'm trying to say is, the website has grown a lot.

Today I'm aware of how much I've grown in the past year thanks to ASE. My understanding of autism has grown exponentially (as has my mini autism library at home) as I pushed myself to find more information to make available to you all, the readers. But my relationships with my family have grown, too. I now have a deeper respect for my mother, as I've come to realize just how much she dealt with and how hard she pushed to help Caley when she was younger. And, of course, the relationship with my sister Caley is deeper than ever before as well because now I understand what she deals with every day in ways I hadn't before and that has made me a better ally to her.

But more than that, today I am more aware than anything of how much I have left to learn. I look at where I am now in my understanding of autism, an understanding which is incomplete and subject to daily fluctuations, and I cannot help but notice how different my level of understanding is today than this time last year. The contrast is even more stark when I compare my knowledge now to that of five years ago, when I did my first (and only) fundraiser for Autism Speaks. When I look back I see all the missteps I've made along the way, and I can't help but cringe a little, because there was just so much I didn't know. Even now, I know that a year from now I'll be cringing looking back at this moment realizing how comparatively little I understood about autism the year before.

And you know what? I look forward to that. Because autism is such a huge area that no one fully understands (if anyone ever tells you they understand it completely, that's actually evidence that they don't), an area in which we learn more every day. And one of the most important abilities for an autism advocate, or anyone for that matter, to have is the capacity to change their mind in the face of new evidence and experiences. If I ever felt I had found the one Truth about autism, that would be reason to worry, not rejoice. We move forward by learning a little more each day, and that's what we try to do here at ASE - share the learning experience and promote understanding, to what extent we can, with the knowledge that there's always room to grow.

So here's to another year filled with learning and growth, for me, for Caley, for ASE, and for all of you amazing readers. -Creigh

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Facebook Page

4/1/2014

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For those of you who don't know, ASE has an active Facebook page now! I really enjoy running it because I feel like it's a great way to spread up to date information and great links, plus a more interactive way to share blog posts! Unfortunately, that means I've rather been neglecting this blog...mostly because I'm not sure if anyone reads it. On the off-chance that you do, though, I'll be playing catch up and reposting my older blog posts from Facebook here. Just so you know that I didn't just write all these articles in one day! :)

I still prefer the Facebook page as a medium for sharing information, though, so if you're interested, like ASE's FB page at https://www.facebook.com/autismspectrumexplained!

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First Post!

8/13/2013

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It's been a long time in coming, but I am finally starting up an autism-related blog on this website! This is the area of the website where I will make my opinions known. What I would like to make clear in this section before I begin is that I have strongly attempted to keep the main part of the website very impartial. You may not realize it, but I put a lot of effort into that - before I would even start telling others about the website, I made sure that a lot of strangers (with connections to the spectrum) read through it, and only when I received the impartial verdict did I start promoting it.

Why did I go to such lengths? Because I personally think it's very important to have an impartial source for people to go to and learn about the spectrum, and there aren't many like it out there. The information focused on is still different from a lot of what you hear on other websites, namely because most websites focus on parent perspectives and young children, as opposed to people on the spectrum themselves and adults, but the articles in the website outside of the blog are still as impartial as I can possibly make them and focus on being informative rather than persuasive.

This blog is where that impartiality ceases and I may choose to write persuasively. If I convey an opinion that clashes with your own, please don't let this influence your thoughts on the rest of the website. If you thought it was written impartially before you read the blog, it probably was. I'm warning of this in advance because in this section, among other things, I will leave open the possibility of addressing the controversies element of autism discussions - causes, treatments, organizations, research, etc - and those tend to trigger certain reactions in others.

So should you feel that if you read something in this blog which disagrees with an autism-related belief you hold near and dear, you will value this website as a whole less, see the rest of it as not being as impartial as I can make it (or not as impartial as what you previously thought), etc, please stop reading now. The rest of the website is far more important than the blog, in my opinion, and I'd rather your opinion of it and of me remain untarnished.

That said, I do have a lot of stances with regards autism that I had to filter out of the rest of the website to avoid taking sides in controversial subjects, and would like an area where I can express the full idea of autism as I see it. I run into so many incidents day to day that deal with autism (I had three just in this past weekend that I would really like to blog about, although I'll just start with one) and often I think that others could also benefit from hearing about them, too.

Another disclaimer before I start writing this blog: I am not a professional. I am not all-knowing in the realm of autism. I know this and want others to know this as well, which is why it's on the bottom of every page on this website. (Although, on a tangent, you should take what professionals say with a grain of salt, too. A degree raises the likelihood that someone knows what they're talking about...but professionals are just as human as the rest of us.) These are my thoughts as a sibling and well-read person who has met a lot of people on the spectrum - nothing more.

So if after that REALLY long disclaimer you still want to read the blog - let's get started!

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