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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{ 16 comments… read them below or add one }
Thank you for your insight. My oldest daughter has aspergers too, and I get the same response you do when, and if, I tell people. Can I pick your brain sometime, when you are feeling better, about hoe you handle your differently abled child?
Aimee, I have often thought about writing about some of my experiences with my daughter, in an effort to perhaps try and help others, but I have always felt so inadequate. If you think any of my experiences could help you, I would be delighted to write about it.
Thanks for dropping by!
I so often feel at a loss as to how to help her, I would love to hear you insights.
The thing I hear the most right now is “oh all teenagers are socially awkward.” While I know that is true, when people say that I know they are dismissing what I am saying and it doesn’t help me help them to understand my daughter, and that her problem go way beyond normal teenage stuff.
I so could have written this post! I have heard the same things about both of mine.
Um, yes, I am thier mother and I can tell you that they DO have it! *SIGH*
Both my Aspie kids are gorgeous! But, no that doesn’t invalidate the fact that they have Asperegers.
I had a very handsome, tall, athletic cousin who had Turrets and even his doctors would not believe my aunt. “He’s too good-looking!”
I wish there were a way to help people understand…
Love you– take it easy!
Hugs,
Rachel
Rachel, you have no idea how comforting it is to hear from you and Aimee that people have said that kind of thing to you, too.
I usually don’t “brag” about my daughter’s good looks, but it is true that she is the best looking child in our family, and since one of her obsessions is her skin and hair looking perfect, she always looks, well, perfect. She spends literally an hour every morning making sure every hair is in place. And, she has this way of sacheting that is just so graceful and it scares me, because she could so easily be taken advantage of by the world (for the last two years she has begged and begged me to become an actress…), so I worry about it, a little. If that makes any sense…which it might not.
It makes perfect sense! I so get it, I DO!!!
{{{HUGS!}}}
~Rachel
I am so very grateful for the things that you have taught me in this post. I have a daughter who is a “late talker” but there is so much more than that. I have parented her differently than my other children-sometimes to the point that well meaning people (my mom) want to know why she gets special treatment. I have never had an answer because I don’t know why other than she is different and I am too scared to find out why. Well that’s not exactly true. We have done the dreaded autism questions and she passes so she must be fine right? Nothing to see here folks. And yet…things are not fine. So reading this has made me see that I am not doing her justice by not more actively finding out who she is and why she is different. I’m not sure this is coherent, or even appropriate to say when you are going through so much. So if there is anything you take from this… thank you. For sharing your struggles and those of your children. Truly.
Katie, thanks so much for sharing that. I started the same place you did–he seemed fine, just didn’t talk, and I was “worried” about it far earlier than anyone thought I needed to be, but I, too, always treated him differently because I just knew.
It was very, very difficult to keep pressing forward, trying to understand why I felt so strongly that something was off, because it was really hard to tell–but, I was blessed to have a few doctors and my daughter (who is about to become a nurse), tell me that they always trust the mother–because the mother is almost always right, even when they can’t find the reason behind the problems or even readily see the problems right away.
So, I have learned, although it is sometimes extremely difficult, to trust myself and my mother’s intuition. After all, I have a right and a responsibility to understand my child in a way that no one else does. Knowing that doesn’t make it much easier though. Thank you again for your words of thanks–sometimes it’s hard to write about such personal things, but I am always happy I did if it can help someone else get to where they need to be.
This is beautiful, Misty.
This happens to us, too!
I have a daughter who, coincidentally, is also our most lovely family member and who also has her own set of challenges. Our story is a little different, though.
She began regressing at around 18 months and we thought we were staring Autism in the face. Daniel has an autistic sister, so those signs were pretty obvious to us. However, for her, it actually was diet related! She has a genetic intolerance to gluten and reacts to gluten as if it were a drug as well as being sick.
The thing I am getting at, (sorry I am sooo long winded!) is that while our situation isn’t the same, we still had and have so many who were/are skeptical that anything could be wrong with her! And while she is still my most sensitive child in many ways, she is fine. Now, we get the skeptics BECAUSE she seems fine! (LIke, yeh, right, food couldn’t have caused all that…or, she seems fine now, can’t she have a little piece of cake?) Um, no! I’ll call you at 3 am as she’s throwing up and hallucinating/ feeling the room spin around her…not gonna happen.
Sheesh. All this to say I agree with you. {blush.}
Hope you can get some rest! Baby steps!
Some of the most physically beautiful people I know have severe disabilities…And the most cunning.
http://www.youtube.com/watch?v=umdG-6aGQEc
This post is an answer to something I have been praying about for so, so long. I can’t even begin to tell you how grateful I feel to you for writing about this, especially taking the time to do so when you are having such difficulties in your own life. I have a 10 year old son who is autistic. Because I homeschool, no one except myself (I am a single mom) spends enough time with him to see his “autistic-ness,” so to speak. So even my own family tells me that I am mistaken, he is not autistic. For the three hours he spends at church each week, he is usually able to keep it together until he gets home and completely falls apart, so my ward members constantly tell me I am wrong, the doctors are wrong, he doesn’t have autism, etc. I’ve even been in the bathroom stall at church and overheard people talking about me as “the mom who is desperate for her son to have a disability.” By far the most oft given comment to my face is, “But your son is intelligent. He can’t have autism.” I want to scream at everyone, “Just because you have autism does not mean you are mentally deficient!!!” But after awhile, you know, all these comments really start to work on you. You start questioning yourself. (I even had my son evaluated by 5 different doctors. But they all said the same thing: autism.) Because of the peer pressure, I began treating my son like he wasn’t any different than anyone else. But that didn’t help anything! It’s just been a nightmare. So I’m just so happy you wrote this post. You’ll probably never understand just what it has done for me! Thank you, Misty. Thank you, thank you, thank you. I’m in awe that you would take the time to write about this with all that you are going through.
Yvette, your comment made me cry, because I, too, have overheard people in previous wards gossiping about how I am making up my daughter’s disability. It was more painful than any other gossip I’ve ever been the target of.
My daughter holds it together enough for the three hour block most of the time, but Sunday afternoon at home she is a mess. Oh, Yvette! I am so, so glad you wrote! You just gave me a little shot of courage and bravery!
Wow! My daughter is the same way, she can do the three hour block, but once she is home she FALLS APART
Most people just do NOT understand how the autism spectrum is different– it is not a “mental illness,” it is not mental “retardation, (Forgive me– I don’t know the correct term for this!) it is just that their brains are DIFFERENT. There are things that they will never understand because that part of their brain doesn’t work the same as most people. AND, conversely, there are things that WE will never understand the way they understand them for the same reason.
My daughter does not know how to give emotionally to others. Yet, she loves EVERYONE, has no guile for anyone, ever. She figures that everyone is her “friend.” So when her “friends” move on and drift away from her, she is confused. She simply CANNOT pick up on social cues, and so people don’t know how to read her, either. I don’t fault anyone for this, it just is what it is.
In our circumstances, we just give love, give love, and have to expect nothing much in return– at least by OUR understanding. But to her, she is ALWAYS giving love, even if she is often in her own little world, unaware of her lack of response. And sometimes, she and my son say very hurtful or inappropriate things– usually things they’ve heard people on movies say. And we cough a bit, smile, and try to explain why that is not a good thing to say.
But they both love so purely, so deeply. They come back with open arms, forgetting that there was anything wrong at all.
Oh, how we are being taught, right Misty! I’m sorry to ramble on, but it just feels so good to share my experiences and know that there really ARE moms that understand!!!
Hugs to all,
Rachel
Rachel, you are describing my daughter so well. It IS so nice to know there are other moms out there with some of the same battles and blessings that I face.