Wednesday, October 3, 2012

It Won't Be Like This For Long

My dear, sweet, beautiful, smart and wonderful friend Shannon has blessed us all with a guest blog. I love her like a sister, probably more because my sisters and I fight like Palestinians and Jews. She is the bravest and strongest woman I know. There are not enough elegant words I could use to describe her, but take my word on it. She is amazing. 

So is her family. Her husband Rob is a fantastic example for what a husband and father should be, plus he's country and gets along grandly with Hubby. Her teenager C is the most kind, compassionate, respectful, and beautiful 15-year-old I have ever met. Little Bug is in love with her (we all are, she's amazing!).

And then there is my precious Ava. She loves me. I know it. I love her. Okay, she tolerates me, but I still love her. She is 3, but dwarfs Little Bug in height. The whole family dwarfs my family in height. Little Bug normally doesn't like younger kids but she thinks Ava is older than her (due to the height) and tells me all the time about the conversations she and Ava has when she calls her on the phone. It's a real phone, just a pretend conversation. 

Ava is just as much my friend as Shannon. She is a beautiful and wonderful child. Read on for my best friend to tell you why.

When I was asked to write this I was kind of anxious about it.

Not going to lie, this is pretty hard stuff and I get funky writing (talking) about it.

Here is our story. Our story about Autism.

Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills.

Autism is different for every single child. Some kids have no communication, like mine...some have sensory issues with taste, smell, touch, also like mine...and some have a hard time with emotion/social interaction. Some will sit in a corner and possibly just stare at a spot on the wall. Some may be completely "typical" and you may not notice. Every single child is different. 

Ava was 12 months old and had no verbal communication. I knew immediately that was wrong. She also loved to bang her head on the couch, by flinging herself back hard (enter Sensory seeking). She had a very hard time with strangers. Actually, anyone who wasn't me, my teenager, or her daddy. 

She was a happy girl, up until around 12 months...

Most people didn't know anything was different. I did. My closest friends did. A couple of strangers did. 

The scariest feeling in the world is when you know something is wrong...and you can't fix it. There is no pill, or cure...there is just wondering, and dread. My heart ached for her...not from embarrassment or shame, but from sadness that she was always going to have a little bit extra to do...a little more for her. Tasks that most parents take for granted...putting shapes in a sorter, chatting, learning quickly. 

The worst part for me was not hearing her say "Mama." Can you imagine? I mean just that little word, that sweet word...I didn't hear it until she was 3. [Of course it was amazing when I did, and she could sign "Mama" but it wasn't the same.]

We had her evaluated, then sent on to a Specialist. They said to wait and see. Maybe she was just delayed. I knew. I started sign language right then. If she couldn't talk, then by God, we would figure out how to sign. She caught right on. My heart did little flips when she started...we could chat. Well, we could learn to chat. 

She was anxious with new people...and transitions...but we could work on it. She didn't meet the classic signs, she had great eye contact and is so very affectionate. She has a great emotional response, so that is not a worry. 

Fast forward, we started therapies...Speech and Occupational. 

Moved cross country with the Army....and met the most wonderful Speech Language Pathologist in the world. She made me feel like we were doing the right stuff. We tried hard, we did so much for her...and someone recognized it. {insert tears} Her new Specialist gave us a diagnosis of Autism, mildly, but Autism. 

I struggled with hearing it. My heart broke. Not for me, just for her. It sucks ass some days. Some days are so hard. *SO* hard.
When you have a little one with Autism... *everything* is harder. You need diapers? Got to make a quick stop at the grocery store? Not with some kiddos. Luckily mine is pretty mild. She rolls with different. Some kids can't. Just a little wayside stop after school can make an autistic child lose their mind. I mean, really bother them. These kids don't understand when something is off routine. Going to see a show? Fireworks? Clapping? Headed to a Tupperware party? Nope, too many people, too much laughter, too much stress for both of us. 

My little Toe Walker. It is very common in Autism, speech delays, and sensory kids. She likes the pressure so it calms her. 

Part of the reason I struggled with this diagnosis...

My little one is fine with stops...she just has trouble with sensory issues. Touching stuff, licking stuff, working her hands...crying if it is too loud outside...all these little things add up to a big part of who she is. She may line up blocks, or cars...she may rock a bit from toe to toe...and she may be a toe walker (which people are fascinated with) but she is a beautiful, loving, caring girl. She is smart, she is learning every day.

My sweet girl. 3 now, and doing so well...with early intervention!!

You know those kids who are "acting a fool" in the store...or that just can't sit still? The next time you think (or say) that they are too big to be acting like that or that they need a spanking...please take a minute to think. That child may be Autistic. That child might have a special need that is keeping them from acting "typical". Don't judge. That makes people with kids that have differences even more anxious. You have no idea the struggles we face just to get to the damn store. Just to run in for milk. Please, don't judge. 

Just recently I got some great advice from a couple of friends. It was Ava's first day of special education preschool. {She goes for 3 hours a day, and has ST & OT plus regular school activities. There are 3 kids in there. The social aspect is amazing, and the things that she is doing now...I just can't tell you how much early intervention helps.} Anyway, back to my story. I knew she was going to have a hard first day. Having never been left was coming. I walked her in, left her, and heard her crying so hard. She cried and cried. She was devastated. That day was horrible. I got stuck in the PTA room, and had to hear her when she walked down with her teacher to breakfast. I had to *hear* my baby sobbing uncontrollably. 

I was a mess. I called my husband, my Mom, and a couple of friends. Tiffany, who is amazing....told me that it was okay to cry, really...and that I could be sad...but that this was a big deal and Ava needed this. It would get better every single day, and to step back and realize how much she would grow. {Ahh, insert more tears} I needed to hear that. I picked her up, crying...after school. I braced myself for this happening every day...and something amazing happened. 

The next day she didn't cry. She stomped in mad, and flung herself on the rug...but didn't cry. She was mad. Pissed...but no tears. Then I went to get her and I heard her laughter. She was HAPPY. Day 3 was even better, she went in willingly and met me at the door with smiles. She is okay. She is learning, and growing. She is painting, sounding out letters, doing more signs...she is okay. 

I could breathe again. My girl. My little baby girl was okay. She is excelling. 
{psst: little secret....on Friday she is getting the Student of the Month award for the first month of school} 

Autism is not a death sentence. It is hard, but not something you can't overcome. There are some days that I sob, I worry, I mope....thinking of how hard she will always have it...and how will she be an adult...with kids...or if that will even happen. Then I look at her...and see her sweet face, smiling and her little hands signing...and I don't care. I just know I am a better Mama for having this mountain to climb. She makes me better. I wouldn't change it for the world. ♥


Shannon {ava_caitlyn} said...

I am so glad that I got to write for you! Thank you for letting me tell my story! I am very lucky to have you as a friend. Ava does love you. She doesn't scream at you...and she lets you hug her. In her book that makes you family. I agree with her.

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