Tuesday, April 28, 2015

Autism at our house

As April comes to an end, I think on how it has become Autism Awareness month. I see all the memes and taglines, and even the tagline 'Acceptance not Awareness.' I think both are important. It seems that a number of people are now "aware" of autism. But it isn't something that is always accepted -- by outsiders. I use the term 'outsiders' because sometimes this autism thing puts us families and therapists in a little group, or club, and only we know the ins and outs, the rules...

I post on Facebook and I blog about our lives, our trials, misfortunes, our joys and our triumphs. All in hopes that someone will be reading and will connect with us. I want the 'outsiders' to feel a little closer to us, to not feel so out of our loop. I want people to understand our struggles and to share in our victories, small and gigantic. It makes my heart happy when someone comes up to me and says, "I read your post. It really helped me understand..."

Autism and Emma's lifelong delays have varied throughout the years. We were told so many conflicting things when she was an infant and toddler. I stopped listening to "experts" and dove head first into books and the internet. I learned how to make social stories, flash cards, replace chewing kitty litter with an apple instead, and on and on... until I found a KNOWLEDGEABLE occupational therapist and then a speech language pathologist that helped us on our journey. Then there were more therapists and pathologists and teachers and counselors. Many of these people are more than just professionals to me -- they have become like family.

I am definitely one of those moms (and dads) who cringe when we hear someone say, "God chose you because you are special/strong/blessed, etc. ..." I want to kind of scream when I hear that. I'll keep religion out of it. But really, no. So many horrible, awful, abusive, neglectful people give birth to children who have disabilities. Who chose them? Who sent those children to them? So, ugh, no. I just happen to be someone who loves my children a lot and would never hurt them. I'm pretty average, but I go above and beyond when necessary to do for my kids what needs to be done. It's about that simple.

At our house, in our little world, autism isn't puzzles pieces and primary colors, nor is it Autism Walks or t-shirts. I have a car magnet--that's about as Loud as we get. :) We have formed a pretty tight community with friends and school employees, and I think we all do a wonderful job of advocating for Emma and teaching her how to advocate for herself. Autism is laughter. Tears. Screaming. Jumping for joy. Dancing. Singing. Kicking all the stuffed animals off the bed. Lying on the floor refusing to move. Learning to tell jokes. Deciding that she can wash her hair all by herself. Three days in a row of being kissed, for the first time in years. Telling her I love her and getting no response. Taking deep breaths. Listening to her tell me the same things she told me yesterday and the day before and the day before that. Teaching her how to apply eye shadow the right way. Watching movies together (and her asking me questions throughout the whole movie :-) .) Autism is praising her little brother for being patient with her, when he would rather yell at her. Autism is a lot of explaining. Repetition. Understanding. Compassion. Empathy. Love.

Thursday, April 2, 2015

you gotta wear shades *Autism post*

We rock Autism in our house! It is our life. Lives. I am dedicated to advocating for Emma and teaching her to advocate for herself. I think that most people in this day and age are AWARE of Autism, but not everyone actually understands what it is. It is a SPECTRUM disorder, affecting each individual differently, with some common denominators. I will post facts on it at a different time, as it is too early and I'm not super awake yet. :-) ... Acceptance is what we strive for, for all people with disabilities to be treated as human beings. ... I am eternally grateful for angels that are placed in our path to help us along the way. <3 I have met great people and have made amazing friends on this journey. Emma has too. I think we are extremely fortunate to be where we are at, at this amazing school, in a kind community, surrounded by friends who just GET it. ... Autism is a part of Emma-- it isn't WHO she is. Everyone is born with a personality. Hers just happens to Shine so bright you need shades. ;-) Thank you all for reading my posts and not getting sick of them. My goal is to share pieces of our life with others so there is a greater understanding of what Autism is for many. Writing is also therapy for me, and I feel incomplete if I don't get my thoughts down! :-)#autism