Color Me Frustrated
I don’t tend to complain much on my blogs. But today, I need to vent! So why am I venting on my autism blog and not my other blog?
This frustration is autism based.
I’m just going to get it out there.
Sometimes I hate the fact that Taylor has autism. HATE IT! I’m screaming it from the rooftops here, people!
But, to back up a second, I have accepted it. It’s been almost three years since her diagnosis. But that doesn’t mean I have to like it.
I have to mention another thing, too, so I am not misconstrued. Taylor being autistic does not and won’t ever change how I feel about her. M’kay??
Okay, back to my rant.
Potty training has been hell. Two. Years. Of. Hell. She’s regressed a lot in the last couple of months. She was doing so well. She was having dry days and a few dry nights here and there. She had no problem going in the potty and things were going well.
Now it just sucks. She pees her pants all the time. No matter how many times I take her to the potty, I never seem to catch her. Pooing is another story. I know when she’s got to go. She has a spot that she retreats to when she has to go. Then I march her into the bathroom just to have her sit there and do nothing.
Then you have days like today where I put her on the potty 3 times in the course of an hour just to have her sneak off and poo herself in the 2 minutes I took to put her sister down for a nap. I KNEW she had to go! GAH!!
Another thing that’s really bugging the crap out of me right now really has nothing to do with her or her mannerisms. It other people. Morons that stare at her like she’s an alien or something. It never used to happen that much, but now that she’s older, her actions are being more scrutinized.
When we were at the fair a couple of weeks ago, some guy stared at her (she was stimming at the time…it does look strange, but I’m used to it) for like 2 minutes as he was walking past (okay, maybe not 2 minutes, but it sure felt like it!) I wanted to walk up to him and smack him on the back of the head and say “She’s autistic! Got a problem with that!?”
Of course I could never do that, but man, I wanted to!
Taylor is 5 now. How are people going to react to her when she’s 10? 15? 20? when obviously her her behaviors are going to be really out of place. I realize that there will be improvement, but I have no idea what she’ll be like that far down the road.
There are so many things that I wonder about when it comes to her.
What is her quality of life going to be?
Will she be able to care for herself?
Will she go to the prom?
Will she ever marry? Have children of her own?
There’s so much that I’m leaving to the unknown right now. And it’s scary.
Do you have any idea how much I pray for a cure?
I just love her so much, it hurts to not be able to understand her. To hear her voice.
But, if she never does speak, I don’t have any problem with being her voice.
She will be heard.
I can definitely identify with a lot of what you say. Especially about strangers who stare or don’t understand. And the what ifs about the future.
You’re not alone. Hang in there. And she’s beautiful.
I know of people who were autism… let me say, they turned out brilliant. As long as Taylor has your support and love, I believe she will turn out fine too! Hang in there, and bless your little girl, she looks like an angel
taylor is beautiful and amazing, your post made me so sad, she is so lucky to have a mommy who loves her so much. I have all the same fears with Holly. Have you read the Holland/Italy story? I have to think about being in Holland on the hard days, and try not to think too far into the future, because it is too scary, the what if, and you don’t know what it will bring, and worrying about it won’t change how you love and care for her now. that said, i know its easier said then done… but I take each day one day at a time, and relish the little miracles and steps forward.
Oh Chantelly, this makes me sad. I don’t know what it is like to deal with the staring from other people, or to deal with a seemingly endless potty training struggle – although I complained a LOT about the year it took Emmy to figure it out. I don’t know how it will be for you guys as time goes on, but Taylor is so lucky to be as loved as she is – I know that you guys will all be okay.
I got blind to the stares. Matthew is now 12 and I know for sure people stare but I never notice. I guess I got used to it. I know that their looks won’t keep me from going out in the real world with my kids. Comments can send me into a tizzy though and I will say something if someone speaks negatively about any of children. Those can’t be ignored.
I’m crying here at work because I can’t even imagine how frustrating this is, especially because of the way you love and care about her unconditionally. The questions you ask are what makes me the saddest…it’s funny the things that we all take for granted and it is harder to see in Taylor’s future. But what you can see in her future for sure is that she’ll always have the love of her parents, her brother and sister, and their family friends. And that she will always been a sweet and special angel that touches people in a special way.
Okay, this is going to be a long one.
First, Taylor is beautiful. And I am sure that she is even more beautiful inside. Your family is blessed to have her because it is through her that you see just how much your hearts are capable of loving another human being. It is through her existence in your lives that you see God’s love for you because He has given you resilient hearts and beautiful souls.
I am suffering from unexplained infertility and what I would give to have even just one child. I have complained a lot of times to the Lord and sinfully questioned His will in my life, and yes, there were moments when I would ask myself “what if God grants my prayer and gives me one but one that has conditions, like autism?” and you know, even if it would be so, I really wouldn’t mind. So, yes, I envy you, for having Taylor, and her brother and her sister. And my prayers are with you, for God to keep you strong all through the years. And for Taylor to continue being a blessing to those who are around her. Let God do His job on Taylor, do not worry about tomorrow, for He knows what He is doing.
Grace to you and your beautiful family.
Hello,
I have an 11 year boy with autism,seizure disorder, ADHD and asthma. So I understand how you feel..but can tell you that my son finally was totally potty trained at age 6….it took several years..but finally the light came on and he did it…Autism is tough….most days I hate it and most days I accept it..but I everyday I love him…my angel from the Heavens.
Hang in there…
Hugs