nite nite, Emma

As soon as summer vacation was here Emma was determined to stay up late every night! I don't really mind. But I have a cut-off point. After midnight is just too late. She's only almost eleven. Well, the nights were getting later and later. And she -- has been getting sneaky--getting up after I've tucked her in. Getting out the Kindle or Ipad. I haven't felt well for a couple of days. Last night I slept hard until about 7:30 when I needed to get up and pee. She was awake! She hadn't gone to sleep! She was watching videos on YouTube! Good lord! Tonight the Kindle was taken away at 9:00. Oh, there was screaming. crying. it was awful. but she finally read a book like I had suggested, then crawled into bed. She didn't fall asleep right away. I kept checking. At midnight I went in again. She was staring at the ceiling, doing something with her hands. I could tell she was drifting off into her world. I asked a few times if she wanted the light off. No answer. I turned it off. She rolled over and closed her eyes. I kissed and hugged her goodnight. Told her I love her. No answer, which isn't unusual. I think she's asleep now.

i'll be honest

So I'm lying here, having many thoughts while on this drug-laced cough syrup. wink emoticon ... I keep thinking about yesterday at the library when a little girl came up to Emma and asked her if she wanted to play with her. Emma thought about it, didn't answer immediately. Sometimes kids will just walk away or roll their eyes when Emma doesn't answer. But this girl waited. Patiently. Emma said, "Yes. I would. ... My name is Emma." The girl told her her name. Emma said, "and I have autism." She was proud when declaring that. I chuckled a little to myself. I had tears in my eyes as they went off to play dress up in the theatre corner. They played for quite a while. I'll be honest, it was a relief to see that this other girl did not see my Emma as 'weird.' It happens a lot. And it shouldn't matter, yeah, what others think. But as a mother, I want my children to be liked and have friends. It's just how it is. I am thankful for other parents who have raised their children to be kind.

catching up

I could complain and be exasperated that Emma stays up late in the summer. But why? It's summer! Last night I went to check on her. It was very late. She was tucking in all of her baby dolls. I helped her. There are 3 doll beds on the floor and more babies tucked in with her. She let me lie next to her (until I snored too loud.) She even let me hold her new baby and burrito wrap it like a newborn. Yes, we're talking about a sweet girl who is almost 11. And it brings tears to my eyes because we didn't have these moments at age 3, 4, 5, or even 6. We have them now. And I cherish each one. She may be a super smart Honor Roll girl, but she's still getting caught up on the pretend play. I love it! It melts me. <3

#autism #PretendPlay

an open letter to my daughter

An open letter to my daughter:

Dear Emma,
Some kids turn into adults still trying to fit in. Trying to figure out who they are. Never being true to themselves. But not you. You already know. You've known. Since day one.
I admire you. The way you learn. It is all your own. Since the week you spoke 55 words not long after the neurologist said you were delayed because you had a vocabulary of 5 words. And the way you do column math in your head now like it's nothing.
I am in awe of your dancing. You will dance anywhere and everywhere. Sometimes I have to remind you that it isn't always appropriate and it might make strangers uncomfortable. *not everyone is begging for you to perform a live show just for them. wink emoticon * But other times, I think, 'eh. Look at her. It's like I can see the colors of her swirling around her as she twirls and jigs and booty-shakes. Go, baby girl, go. smile emoticon '
Your laughter is infectious. It catches on and makes people smile. It warms my heart. I know which laugh means what, and when you've had enough-- when it's time to shut things down. I know when you need to decompress.
Your fashion sense is the best. You Own your look. You always have. If I could slow down time and keep you in your Capri pants, ruffle skirts, and glitter rhinestone butterfly/cat/panda 3/4 sleeve shirts, I certainly would. So I could hold onto these years a little longer.
Your confidence can't be shaken. What I would give for that kind of attitude!
You are loyal. Compassionate. Knowledgeable. A leader. A trend-setter.
I'm the lucky one. I got YOU. A daughter that I look up to.
You're going to go far. You're going to make things happen. I don't doubt it one bit.


Love,
Mom <3

#autism #love

discouraged

feeling discouraged. this PCOS thing is bullshit. I'm usually so positive. I feel like I am falling apart though.
my weight just keeps packing on. I exercise DAILY. if I take a day off I regret it. if I walk too far or do too much I regret that too. I can't seem to win. my body punishes me almost daily now. I am so swollen. my belly is hanging down. my skin feels so thick. the diuretic makes my body BURN LIKE FIRE if I'm in the sun and I get a terrible headache. the Metformin makes my already gallbladder-less body shit out about 4 -6 times a day. I drink so much water. I pee constantly. this fat body is NOT MINE. what has happened????? I am so miserable. my kids have both asked me in the past week (my son, just tonight) why I am so fat. I am crying right now. I feel so ALONE. I want my body back. I want my life back. I want to run like I used to and not finish the miles with a face swollen so huge and puffy.
my family doctor hasn't returned my call about getting a referral to an endocrinologist. I am going to call the insurance company tomorrow and see if I even HAVE to have a referral. please, dear everything in the bright blue sky, my fingers are crossed that I don't need a referral and that I can find a specialist who can actually help me.

I hide all the sadness I feel from my family and friends. I've told them about this.. about how my symptoms are worsening. I don't think anyone really understands though. I can't blame them one bit. before I knew I had it (or it actually became a problem), I wouldn't have understood either. I am no whiner. no victim. I'm a fighter. I need a good physician to fight the fight with me. ive tried about everything I can find online to manage the symptoms myself -- nothing works for longer than a couple of months.

the weight. it comes on in the double digits, almost overnight. disappears for a while. then comes right back. I am not myself. I am embarrassed. and I'm afraid my kids are going to be embarrassed of me.

I want ME back.

I want to be able to work out hard and feel the results like I once did. now I just feel even worse. my body is working against me. I won't quit working out. I love it. I need it.

tags: #PCOS #polycysticovariansyndrome

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