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Monday, December 31, 2012

Dear me in 2013

Dear Me in 2013,

 What can I say? Just when you thought things were looking up and finally felt progress in the chaos you call your LIFE, man did you get smacked in the face. You finally had her aggressive behaviors almost gone, her diet %100 modified, you were going to finish school, and instead of getting a phone call from school everyday it was down to 1 time per week. Scripting was only at night time. Bath time became a breeze. Transitions were happening with out having to bring 20 security items with us(we were down to 2 or 3). The visual schedule was a success! She ate broccoli!
     
In October everything you worked endlessly and tirelessly for was swept away by raging flood waters and 70 mph winds. In one day your life changed forever... again. You thought to yourself, how many times do earth shattering life altering occurrences are going to happen in my life? I think you are probably at 7? But who's counting right?
    
 Hurricane Sandy not only took your possessions but she trampled on the Boss Lady's progress. She took everything a way in a few hours. POOF! gone. Walking into your house the day after put a wrench in your heart like none other. With Autism, your child has obscure attachment to things. How will she handle the loss of all her items that make her feel better? Parents of typical parents worried about their kids clothes, beds, and toys. Your biggest worries were HER SWING, her weighted blanket, her car seat that she goes into after a melt down for security. The strip of velcro on the wall with her visual schedule to prepare her for her day. GONE ALL GONE

Honestly, we could care less about everything else being lost. Possessions have no value to me. My main concern was regression. Where are we going to live? I cringed at the thought of our days to come and how different our journey would be from many of the other affected in this vile storm. We were nomads for 30 days. We had to break each visit up because after 3 days we felt we over stayed our welcome. Between Grace smacking someones dog, waking people up screaming in the middle of the night, or climbing into other people's baby apparatuses  or just saying exactly what was on her mind at that very moment. I think having people seeing our life under a magnifying glass was hardest. Having people watching my daughter melt down, throw things, scream at bath time, or punch hit and scratch me. I always had the security of my 4 walls to hide this from the world. Sure, people in my life knew what was going on, but I had no control on how much people actually saw. Everything out in the open. 

Also what comes with being displaced is having to watch Boss Lady every second of the day. My house was Autism proofed and I could comfortably sit in the living room while she was in her room. That luxury has vanished. Keeping a constant eye on her has put a lot of wear on me.

Everyone we stayed with were super understanding and patient and I thank God for that. But I feel there is only so much patience and I am sure where we stayed some could not grasp or wrap their head around WHO GRACE is and WHAT exactly AUTISM is. The people who opened their homes to us I will be forever grateful to.

Well here we are 60ish days after Sandy. We are still with out a home. We are living in a room with in laws. Discipline for now has gone out the window. The hitting, scratching, biting stocks are up and listening is low. I feel so angry sometimes. What was the point of doing all this work? I guess you can say some form of depression has settled in. I have gained 30 pounds,and have come to enjoy junk food very much. There are days where I just feel powerless. But there are days where I do feel empowered.

I write this letter to you, not to be sad, but to realize we can not plan out our lives and get too comfortable. With that being said I do not want you to lose your positive outlook on things. That characteristic you have is what got us to where we are today. Grace is going to be fine. Who knows if she would of regressed anyway? No one has the answer to that. For 2013 I do not want you to give up. Even though life knocks you down ever so often, you have proved life wrong every time by dusting your self off, getting up and living on. The Hurricane experience has taught you a lot about life, love, people, and Autism. Always remember, even though you lost a lot, you have gained a lot more too. Never forget the 100s of people who came to your side whether it was words of wisdom  socks, or a check. Now you carry all of these amazing people with you. So when you get down, read this letter. This too shall pass. Happy New Year! 

Love Always,
You from 2012

p.s. put the junk food down you! are better than that!

"it is not until you lose everything you gain everything"

Sunday, December 30, 2012

Let's Take it from the Top

It was a brisk November day. A psychologist knocked on our door and played with my toddler who struggled on a daily basis. She sat me down and explained autism spectrum disorder. I had 20 different acronyms thrown at me as I was trying to swallow Autism. You know in the movies where they illustrate a person experiencing anxiety and everything is echoing and their vision is going blurry. It's true! I felt numb, sad, angry, and relieved. Relieved? Yes relieved, because Grace had been getting services from 15 months old and there were no answers. It all started with speech therapy, then they added special Ed. Along came occupational therapy (OT). Last but not least physical therapy (pt). 

When speech started, there weren't any words. She couldn't even answer to her name. That's when they added special Ed, which is therapy to help cognitively. The words came! Yey she spoke! She will grow out of this I thought. Then came the scripting, echolalia, jargon, the sensory issues, the extremely aggressive behavior. Like a water fall, as speech was delivered, so was every symptom of Autism Spectrum Disorder (ASD).

After her diagnosis the therapies increased and became intense. Everyday 3-4 therapist entered our house and worked with Grace. There were happy times and There were times when chairs went flying across the living room. Everything you and I learned naturally Grace has to be taught. It's called incidental learning, she struggles with it. Examples are: pointing, answering to her name, navigating her place in space, grasping objects, stringing sentences together, playing, turning a picture right side up, jumping, walking up and down stairs, emotions, etc.

I don't think we left the house much for 2 years and if we did all 3 of us would end up crying in the car on the way home. There were days Super Daddy and me were covered with scratches and bruises. Our poor grace could not express what she needed and her sensory processing was way off. But a lot of this has been helped from her therapists.

Super Daddy and me were wiped. But we trekked on. I found myself weighing out what she could do and it helped and helps a lot. Eventually Grace was placed in an amazing school in a self contained classroom, she is still there in pre k in a 9:1:3 and has her own 1:1. With all therapies above she also receives counseling and movement therapy.

Grace has no filter and is best described as Aspergers. No diagnosis of that. But she says exactly what's on her mind and does what exactly comes to her mind. She is extremely literal and a concrete thinker. She is so loving. She talks too much and has a hard time with personal space. A lot of her speech comes from tv shows, movies, or commercials. As a coping mechanism when she can't find the words to say she will recite a sentence from a movie that applies to the actual conversations. Sometimes for fun she will rattle off an entire movie. Genius, if you ask me. When in the car and we pass a store she knows she will sing the commercial that goes a long with it. she thinks in pictures. She can tell you every color including indigo, and every shape including a rhombus. But if you ask her what hurts or why she flung a chair across the room you will get a blank stare or a scripted sentence in return. At times she can become extremely aggressive but thank god never towards her peers. She loves routine and hates change. She makes me laugh with the quirky things that fly out of her mouth each day. She sees the world differently than you and me. Everyday is an adventure with Grace, the boss lady. Super Daddy and me love her and do everything we can to make every challenge she faces easier. We take this journey in strides. Some days it's tough. But it's our life and our adventure. I hope you enjoy our ADVENTURES on the Spectrum :) 

"Maybe it's not about the happy ending, it's about the Whole story"

...pieceloveautism...