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.

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

letter to our attorney, in regards to the denial letter we received from SSI for Emma

I know that our correspondence is all "business." But I wanted to take a few minutes to say a few things. i dug out the original denial letter from Social Security. I got mad when I reread the part where it says Emma doesn't qualify because she isn't in "pain." That doesn't even make any sense! Since when does a person have to be in pain to have a disability?? And they don't know Emma. They don't know that some noises hurt her and she shuts down. They don't know that she is almost 11 and still can't remember to close her eyes when I am rinsing the shampoo out of her eyes. Or that she doesn't process that the handle in the shower is hot one way and cold the other. I have to regulate the water temperature for her. They don't know that when her little brother was using the potty, Emma couldn't begin to think of what she needed to do when SHE too needed to use the bathroom. So she stood naked in the living room and screamed and peed all over the floor. They don't know that she doubles over in pain because she hasn't had a bowel movement in 4 days, despite taking Miralax and 2 stool softeners ( I give her 2 now) every day. And that it costs me gas money that I don't have, in an old car, driving an hour to a specialist to see what kind of help she needs-- what else can I do to help her go to the bathroom. They don't know that some mornings her "switch" just doesn't turn on right away and I have to dress her and help her hold her spoon until her brain " turns on." They don't know that my girl is sweet as can be, but rarely hugs or kisses me, but she has kissed me on the lips two days in a row and I have cried because I'm completely over the moon. They don't know. 

Thanks for reading. :-)

i don't owe an explanation, but, here, let me give you one

I am incredibly hard on myself. And I thank my mother for instilling guilt in me, so that when I am not well or I say no to someone I feel really really really bad. Not good enough.
Examples: 1. when I didn't feel well and I knew I needed to sleep, I turned down a substitute job one day. I hated myself that day. 2. I feel guilt and am convinced that others look down on me for not working a full-time job outside of home. Even though this is where I need to be. My kids, Emma in particular, need me. I worked outside of the home for over two years after the divorce. It was hell on all of us. Emma had frequent meltdowns. Noah lashed out. I had panic attacks. I don't have family and friends that are able to help with child care. ...
... this brings me to this question: why do I feel the need to explain myself? I don't owe anyone an explanation. Why do I do this to myself? I beat myself up. My depression deepens. Sunshine and running are the only things that help.
I work hard here at home. With my child care. With keeping my house looking nice. I work hard at the schools when I substitute. I am here when I am needed. To take my children to the doctors ( like today.) To be here so I can go down to the school if Emma needs me. To be here to Emma's morning routine and to deal with her afternoon lows. ... but there I go explaining myself again.
I feel inadequate when I don't make enough money to pay for the things my kids need. I usually do well, we get by...sometimes there is money left over. Sometimes there is not enough to stretch. And I feel like an incredible loser for not taking a full-time job. I remind myself WHY I did not. Why I am here. And that my kids are so happy with me here. I know what works for us. And I keep trying to make it work.#singlemom #autism

autism, Emma, and gender stereotype obsession

If you've ever wondered why Emma talks about pink anything, sparkles, hair bows, eye shadow, lip gloss, dresses, dancing, fashion, pop music sooooooo much, this is a screenshot of an excerpt from an article I came across that will give you a little bit of insight. Yes, it is just who she is. But it is also typical for her to obsess over these gender-specific stereotypes as an Autistic person. It once (as near as a decade ago) was only noted in boys on the Spectrum to have obsessive interests and to talk about them in a one-sided conversation. Two specialists we took Emma to as a preschooler did not recognize this in her and told us she couldn't have autism because she talked too much and she was doing pretend play( dressing as a dancer and dancing.) It took a third (a wonderful, wonderful, educated doctor and psychologist who was extremely thorough in her observations, to finally diagnose her. ... even after a neurologist telling us Emma had autistic-like characteristics at the age of 1! Anyway, just a little Autism post for you. <3 .... and Emma does attempt to make conservation. :-) she asks your opinions on colors and favorites and likes. And she asks again. And again. We often have the exact same conversations day after day, if not for weeks. Even months, some topics persist. It's a little like Groundhog Day sometimes. <3 We once were talking in the car, and I dropped her off somewhere. I picked her up later, and she started up the conversation right where we had left off. :-)

not gonna buy them. nope.

I am a sucky mom. I don't give a shit about Spring Picture day. I never dress my kids nice or do their hair neat. Those picture packages are twice as much as fall pics. We never buy them. I bet the kids looked fabuloso in theirs today.

a morning meltdown

Charlie sniffed the ground, looking for a good spot to relieve his full bladder. I held onto his leash, looked up at the deep, thick, blackness around me. Snowflakes, so many of them, revealed in the lamplight. I said a prayer to the Universe, to keep me going, to give me warmth and light and assurance and the right words to say and a calm voice to say them, when I returned to the house.