Raising an autistic teenager, at times, isn't much different than raising a typical teen. They have their hormones, their crushes, their defiance, and their attitudes. If you have an autistic teen aged girl, they definitely have their PMS. LOL. They want to do what they want to do, and they don't want to listen to you. Sometimes it's really hard to differentiate between what is typical behavior and what is autistic behavior. The have their own ideas, their own desires, and their own way of doing certain things. This is great! What is sometimes a challenge is when they cannot do what it is they need and want to do.
Amanda will be 16 next month. She has come sooooo far, and I am soooo proud of her! She wants to get married, she wants to have a job, she wants to drive a car (gulp), she has dreams. She sometimes asks me "Mommy can I do...." The question changes frequently, but my answer to her is "Amanda, you can be anything you want to be." That's what I tell her. What I ask myself is something entirely different. I honestly don't know what she will be able to do when she gets older. As it stands right now, in her almost 16 years, there are so many things that she still relies on me to do for her.
She can put her own shoes on, and she can tie her shoes. However, if the shoes are not marked L and R, she often puts them on the wrong foot, and doesn't even realize it. I don't know how it's not so remarkably uncomfortable for her, but she doesn't seem to care. There are times she'll put her shorts or pants on backwards. Again, she doesn't seem to mind. She is still unable to manipulate buttons and zippers on her pants. She can't shave her arms or her legs. I am happy to announce that just a couple days ago, I decided that I was no longer going to help her shower, and FORCED her to get into the bathroom and do it herself. You know what? She did it! And she didn't do a bad job. Practice will make perfect for this. Even still, I have to show her what is the shampoo, what is the facial wash, and what is the body wash. Will she ever be able to just do it without ANY assistance? I simply do not know. I hope she can, but I have to say that after almost 16 years, I'm beginning to have my doubts.
There are days, honestly, I find myself resenting the fact that I may have to continue this for the rest of my life. I immediately feel guilty about it, and feel like a horrible mom, but these feelings do creep up on me despite my best efforts to stop them. I am not saying this for pity, and I am asking those of you reading this not to judge me. I am putting these feelings out there in hopes that other mothers in similar situations find that they are not alone. The truth of the matter is this. When I had children, I just expected the normal cycle. Newborn phase, baby phase, toddler phase, preschool, elementary, middle school, Jr high, high school, college, marriage, and see ya! Now I have vivid images of me being 72 years old and helping a 50 year old with a bath. I get sad, I get mad, I get depressed, then the feelings go away and we make some progress. Then we hit a plateau and I picture it all over again. My oldest son is almost 19. I have been bathing children for almost 19 years. I can honestly say that I'm over it. At times someone will tell me that's all part of being a mom. No kidding? BUT by the time a child is around 8, they're bathing themselves and doing so much more for themselves, and you don't have to do it anymore. I've done it almost every night for almost 19 years! Again, I am not seeking pity. This is just my life with autism. I changed diapers for 16 years! From the time my oldest was born till the time my youngest was potty trained, it was 16 years. Yes, there are 7 years between Amanda and MacKenzie, but Amanda wore diapers, at least at night when MacKenzie was born, so there was no break for me there. When Zachary was potty trained, I wanted to throw a party! There are times I wish I could live one day without Autism. Just one normal day without the routines, without having to do so much for someone else. Just one day I did not have to be a primary caregiver. Is this selfish? Maybe. Yes I know it's part of being a mom, but if you are reading this, and none of your children have special needs, think back. How long did you have to do EVERYTHING? Your children learned and moved on to independence. Amanda hasn't....and I never get a break.
I don't mean for this blog to sound negative in any way. But I've said from the beginning that I'm keeping it real. And these feeling are very, very real for those of us raising children with autism. Yes, I do suck it up. I do what I have to do, 99% of the time with a smile on my face because that's who I am. I do, and will always continue to do what I have to do for Amanda. But I will say this. I'm getting tired...
