"You are your child's advocate."
"Be an advocate for your child."
I hear this constantly screaming in my head throughout most days. I've heard this from every autistic parent I have met this past month and it's absolutely terrifying. After having Cheyanne it was hard enough knowing the fate of this innocent, beautiful baby was left solely in my hands. Now, it's different. Becoming a mother was natural, being a parent to a special needs child is not. It's not something that is a part of you, that emerges the moment that little bundle is placed into your arms the very first time. In my case, the moment the nurse laid her down on my stomach and with her eyes still shut tight, her little hand blindly reached out and grabbed my hand.
Of course hearing the news that she is autistic has changed me, but it's not something I could ever prepare myself for. I look back this past month and I feel like I've wasted so much time, the worst part of this all is I have no idea what being an advocate is. Of course, I know what the definition is but I don't know how to be an advocate for her. I spent many hours on the internet researching autism, I've been to the book stores and purchased as many books as I can afford that has anything to do with autism, enrolled her in Girl Scouts to help her social skills, I've applied for Social Security to help with therapies, and I finally have an ARD meeting that's scheduled for tomorrow that I may or not be able to attend because not only is Cheyanne sick but I may not be able to get time away from work. I don't feel like it's enough, there are days like today that I feel like I'm failing, but I don't know what else I can do. I need to do more.
I know I am there for her in every way physically possible, but it's pathetic how emotionally unavailable I am to her some days. It's a constant battle and there are so many days I hate myself for it. She is already one parent short, I can't keep doing this to her. This is not the parent I wanted to become or the parent I dreamed of being while carrying her for those nine months. She deserves so much better.
I'm feeling cynical today. Maybe it's due to Cheyanne being sick and I'm feeling completely helpless. I hate seeing her so sick.
Sunday, October 14, 2012
Tuesday, October 2, 2012
Red light, Green light.
I've had a stream of emotions running through me the entire day. As I climbed in bed this morning with Cheyanne she crawled in next to me, wrapped her arms around me, and whispered "I love you". It melted my heart and instantly made me grateful for her diagnosis. The more I read into Autism, as much as I hate that she has to endure all of this, I know this could be much, much worse. Some of these children are mute and have extreme anxiety by a simple touch. I'd be lost without her hugs, kisses, and 'I love you's'.
Today was her second week of Girl Scouts and it doesn't look like it's getting much easier. I did just as the therapist said and told her where we were going and what to expect. The moment we got there she climbed into my lap, wrapped her arms around me, and buried her head into my chest. I asked her if she was scared, she shook her head yes, began whimpering and telling me she wanted to go home. She stayed secure by my side the entire hour. At one point they went outside to play 'red light, green light', and I had high hopes that she would feel more comfortable playing outside with all the other kids. Instead she sat down on the steps next me, folded her arms, and screamed "I don't want to play!". I put my stuff down and told her I'd go play with the other kids, trying to show her there was nothing to be afraid of. She finally got the hint after a few rounds and came to stand beside me, but before I knew it she was sitting on the ground playing with the grass. I explained to her the rules of the game once more and as soon as the little girl screamed 'green' she proceeded to crawl next to all of us. My heart broke. The moment girl scouts was released she ran outside to the playground next to the church and began playing with all the other kids like they were best friends. Once again I am completely dumb founded by the way her brain works.
On the ride home I heard her reenacting the night like she often does, "red light, green light, red liight!!".
"Honey, do you like red light, green light?"
"I do mommy, I do like red light, green light!"
My body ached, I knew she wanted to play, but for reasons I have still yet to figure out she couldn't. There were so many people there tonight and I felt how alone we truly were. I felt so disconnected to all the other parents there, I can't fathom the disconnect Cheyanne feels.
If there was anyway I could make this easier for her I'd do it in a heartbeat.
I've honestly been trying extremely hard not to feel sorry for myself, and when I do it's an even bigger struggle to not complain to friends and family. That's one of the biggest reasons I decided to start this blog, it's their own prerogative if they want to come here and listen to me complain. Then there is days like today, I'm sitting in this girl scout meeting bored to tears wishing I was at her softball game, dance recital, or cheerleading practice. In no way am I saying that she's not capable of doing any of those, but there is a chance that she won't. She has very poor balance, awkward gait, and terrible eye contact. Of course there is therapy that will help, but it may not be enough. I will never, ever put a limit on her capabilities or stop fighting for her but I hate thinking this may not be a part of her future.
This could all be me being selfish and wanting to relive my childhood. I used to love going to softball games, my own and to watch my brother play. For years I've been impatient and excited to attend her extra curricular activities and all I have is to sit through a dull Girl Scout meeting. That's not exactly what I've been looking forward to these past few years. Even her school plays, do I need to come with the expectation of her lying on the ground and shutting the entire world off like she has done in the past?
Then there is the games, and this ridiculous disappointment I feel rushing over me when I think about the stacks of board games I have collected over the years for her. I have such fond memories of sitting around the kitchen table and playing board games and cards for hours on end. The older I got the more I fantasized about gathering around the kitchen table for Friday game nights with my little family. There is so much missing from that picture, one of the biggest pieces being her father. Cheyanne is not dumb by any means, but instead of playing by the rules she'd rather make up her own rules. That and she's bored within five minutes, I thought it was just her age and for all I know it could be... but I'm not counting on that much anymore. She may not be one of those board gaming people, I'll just have to suck it up and get over it like I'm trying to do with everything else.
I hear it, I sound like a awful mother, here I am mourning a part of my daughter that I want so deeply instead of being grateful for what I do have. I'm not embarrassed by her, nor am I disappointed in her, and I definitely don't love her any less. I don't know how to put it any other way except I'm grieving the future that I envisioned for us, she's still the exact same person she was before the diagnosis but the things I thought she would grow out of now have a possibility that she never will.
At the end of the day if there is only one thing that I'm sure of... is that Cheyanne is the best thing that has ever happened to me. Whatever happens in the future I can deal with and get over as long as I have the hugs, kisses, and the "I love you's".
Today was her second week of Girl Scouts and it doesn't look like it's getting much easier. I did just as the therapist said and told her where we were going and what to expect. The moment we got there she climbed into my lap, wrapped her arms around me, and buried her head into my chest. I asked her if she was scared, she shook her head yes, began whimpering and telling me she wanted to go home. She stayed secure by my side the entire hour. At one point they went outside to play 'red light, green light', and I had high hopes that she would feel more comfortable playing outside with all the other kids. Instead she sat down on the steps next me, folded her arms, and screamed "I don't want to play!". I put my stuff down and told her I'd go play with the other kids, trying to show her there was nothing to be afraid of. She finally got the hint after a few rounds and came to stand beside me, but before I knew it she was sitting on the ground playing with the grass. I explained to her the rules of the game once more and as soon as the little girl screamed 'green' she proceeded to crawl next to all of us. My heart broke. The moment girl scouts was released she ran outside to the playground next to the church and began playing with all the other kids like they were best friends. Once again I am completely dumb founded by the way her brain works.
On the ride home I heard her reenacting the night like she often does, "red light, green light, red liight!!".
"Honey, do you like red light, green light?"
"I do mommy, I do like red light, green light!"
My body ached, I knew she wanted to play, but for reasons I have still yet to figure out she couldn't. There were so many people there tonight and I felt how alone we truly were. I felt so disconnected to all the other parents there, I can't fathom the disconnect Cheyanne feels.
If there was anyway I could make this easier for her I'd do it in a heartbeat.
I've honestly been trying extremely hard not to feel sorry for myself, and when I do it's an even bigger struggle to not complain to friends and family. That's one of the biggest reasons I decided to start this blog, it's their own prerogative if they want to come here and listen to me complain. Then there is days like today, I'm sitting in this girl scout meeting bored to tears wishing I was at her softball game, dance recital, or cheerleading practice. In no way am I saying that she's not capable of doing any of those, but there is a chance that she won't. She has very poor balance, awkward gait, and terrible eye contact. Of course there is therapy that will help, but it may not be enough. I will never, ever put a limit on her capabilities or stop fighting for her but I hate thinking this may not be a part of her future.
This could all be me being selfish and wanting to relive my childhood. I used to love going to softball games, my own and to watch my brother play. For years I've been impatient and excited to attend her extra curricular activities and all I have is to sit through a dull Girl Scout meeting. That's not exactly what I've been looking forward to these past few years. Even her school plays, do I need to come with the expectation of her lying on the ground and shutting the entire world off like she has done in the past?
Then there is the games, and this ridiculous disappointment I feel rushing over me when I think about the stacks of board games I have collected over the years for her. I have such fond memories of sitting around the kitchen table and playing board games and cards for hours on end. The older I got the more I fantasized about gathering around the kitchen table for Friday game nights with my little family. There is so much missing from that picture, one of the biggest pieces being her father. Cheyanne is not dumb by any means, but instead of playing by the rules she'd rather make up her own rules. That and she's bored within five minutes, I thought it was just her age and for all I know it could be... but I'm not counting on that much anymore. She may not be one of those board gaming people, I'll just have to suck it up and get over it like I'm trying to do with everything else.
I hear it, I sound like a awful mother, here I am mourning a part of my daughter that I want so deeply instead of being grateful for what I do have. I'm not embarrassed by her, nor am I disappointed in her, and I definitely don't love her any less. I don't know how to put it any other way except I'm grieving the future that I envisioned for us, she's still the exact same person she was before the diagnosis but the things I thought she would grow out of now have a possibility that she never will.
At the end of the day if there is only one thing that I'm sure of... is that Cheyanne is the best thing that has ever happened to me. Whatever happens in the future I can deal with and get over as long as I have the hugs, kisses, and the "I love you's".
Subscribe to:
Posts (Atom)