For the past twelve years, our little ranch has been blessed with having a daughter with Asperger’s Syndrome.
Sometimes, when I will hesitantly tell someone, they will say things like this:
I don’t think she has Asperger’s because she…
And then they will proceed to fill in the blank with something that they think is a reason why I am wrong.
I don’t know why they do that, but most of the time there are two reasons, 1) in short spurts, she doesn’t seem too socially awkward sometimes, and I think people still have a tendency to think that anyone with any kind of autism will act like Rainman, and 2) she is a very, very beautiful girl, and for some reason, people are uncomfortable with the idea that someone who is gorgeous could have autism, because if you are gorgeous, then your life should be perfect or something.
I think it’s partly because our society spends ridiculous amounts of time and money obsessing about physical beauty, thinking that physical beauty alone is the pinnacle of perfection. Therefore, if you have reached a point of physical beauty that rivals the majority, I think some people believe that it is somehow impossible to have any kind of disability.
I have to admit, when people insist that they don’t think she has Asperger’s, for a split second every time, I want to believe them. In fact, there was a time when I decided that she just didn’t have it. I blamed her symptoms on diet. I blamed them on her being tired. Sometimes I even tried to tell myself that it was all in my imagination, and that there was no problem at all.
But, that didn’t change her Asperger’s, and it made life infinitely more difficult for her. It stopped her in her tracks from reaching her potential on a daily basis, and I couldn’t live with that.
As time has gone by, some things are far more apparent now than they once were, and it is impossible to ignore that she, indeed, has autism, and she is differently abled.
I also discovered that it is not just my daughter and Asperger’s that can be questioned.
As we have been learning more about Noah’s “global developmental delays”, I have had some people tell me:
Oh, he’s probably just a late talker. My friend/cousin/co-worker had a daughter who didn’t talk until she was three.
And I guess they are trying to help, and I guess it’s again, that some people just don’t feel comfortable, and they have to make up an alternate more comfortable situation in order for them to feel better, but sometimes I want to scream
He is not just a late talker! I wouldn’t be going through all of this if he were just not talking. Ugh. Do you realize how hard it is for me to discuss this without crying?
The doctors agree that it is not just a late talker “thing.” And with every passing day, it becomes more blatantly obvious that he is different.
And then there is me, now. At least temporarily, I am going to have my own struggle with certain things like walking, talking, and being able to understand and process words and movement. And coordinate my hands–that takes a supreme amount of effort.
And I think I would be devastated if someone said something like,
She doesn’t have a problem because she is so beautiful.
Ha. Just kidding. But, you know I can only hope that people will be aware that it takes tremendous amounts of will power and actual energy just to do simple things–and even just listening to a conversation is extremely difficult for me.
I realize now that it is vitally important to understand the effort it takes for my differently abled children to do things, and vitally important for me not to ignore their battles just because I would rather they not exist. It is also vitally important for me to listen closely to the Spirit to know when I need to push for more or give it a rest.
It’s really hard to know. Today, for example, I ended up feeling really badly because I did too much–got up too fast, tried to walk too much, went to short stay therapy and saw the children. It was just more than I could do. And, I didn’t realize that I hadn’t had enough to eat (because of the pregnancy and the medications), nor had I paced myself very well. I didn’t realize that I hadn’t had enough water (I am so used to being on a steady IV that I forgot to drink enough), and I didn’t sleep well last night.
So, I needed to take some deep breaths and let go and rest for a little while, without getting frustrated or angry that I couldn’t do more or that I somehow failed because my body just couldn’t go there. Sometimes, I think I need to see that more in my children who have special needs because it’s kind of the same for them. And sometimes, I have to admit, I have gotten a bit frustrated with my children instead of realizing how very frustrating it is to them. After all, they just want to please me. It must be such a struggle sometimes.
I am trying to learn as much as I can from this experience–I want to be able to use it to create a better, more empathetic heart. One that doesn’t get so easily impatient. I hope I can.
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