Monday, January 30, 2012

My Daughter Has Asperger's, And I Feel Like A Fraud

I've wanted to sit down and write this post for days, but the words just weren't coming.

On January 24, my daughter was diagnosed with Asperger's Syndrome.  I was completely unsurprised.  I've known it in my heart for some time.

Anna has always been different, since she was a baby.  She didn't really start talking until she was about 3.5... she had a handful of words, but didn't speak much.  She was easily agitated, and slept very little.  (She was 2.5 before she slept through the night for the first time.)  Since she was a toddler, she has loved bugs... this love for bugs has only grown throughout the years, and is now almost an obsession.  Anna has always been incredibly smart, and she loves to talk (lecture) to others about her interests (usually Madagascar Hissing Cockroaches, or rocks).  She is constantly moving and wiggling (she is also diagnosed with mixed-type ADHD), and her handwriting is atrocious.  She argues a LOT, and has explosive fits of 'temper'.  This is just the Cliff's Notes version of my baby, however.  She is so much more than all of this, and I could talk all day about her.

There are a lot of days when I feel that I can't take one. more. minute.  I don't understand her, and she doesn't understand me.  Dealing with meltdown after meltdown wears me out physically and emotionally.  But there are good days... and it's on these good days that I feel like such a fraud.

When your child is 'bad', having a meltdown, or generally being uncooperative people think "What is WRONG with that kid?  Do something.  Put your foot down... figure out what's going on and fix it!"  People even say it sometimes.  They don't know where you've been.  They don't know that you've tried it all, and none of the typical things seem to work.  This was our situation... the 'typical' just didn't work.  She doesn't respond to it.  But now we know why, and can adjust our ways of thinking and work WITH it, rather than against it.

You know what worries me now?  Good days.

Now that everyone knows what's going on, and knows her diagnosis, I fear they will always be expecting the worst.  I fear that on her good days (and she definitely does have them) they will think "There's nothing wrong with that kid.  She's fine!  This is the problem with parents today... diagnosis-shopping so they don't have to deal with their kids!"

On her very good days, I feel like a fraud.  I worry that others will think I'm a fraud, and I second guess myself.  I wonder if it's really true.  After all, where's the difficulty?  (It can be easy to forget that the previous 3 days were a living hell when everything is going so smoothly....)

I've already had people say to me "Really?  She's not that bad!"  "But, she's so friendly!"  "But, she's so happy!"  The guilt of having to explain gets to me.  I feel like I'm talking down my child to justify myself rather than celebrating her good points.

I hope that I won't always feel the need to justify myself.  I hope that one day I will just say "Yep.  Really."  :)  And leave it at that.

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3 comments:

  1. hello
    for a while i've been thinking about posting a blog on the same subject but from the person with As perpective, i also feel a bt like a fraud when i 'come out' with the condition and get pretty much the same responses as youve mentions inculding oh you can never tell etc. anyway thankyou for your post. very intresting read!

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  2. I remember reading a book one time where the protagonist was the target of a nasty rumor campaign. He went to his historically significant and highly politically experienced father for advice. His father gave him a lecture on the difference between honor and reputation. He stated that honor is what you know about yourself and reputation is what other people think they know about you. His advice was to protect your honor and let your reputation fall where it will. There is no mechanism to control the minds of men, so no there is no need to pander to them. Pursuit of reputation can lead to honor not being true and there is nothing more devastating than having a soaring reputation while your honor festers at your feet.

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  3. I understand completely the pain you are talking about, but we are the childs voice and with out us saying to others what our girl feels, our children will never get the understanding they deserve.

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