Tuesday, October 2, 2012

Every Rose Has It's Thorn

When you start a blog and it starts to gain popularity you tend to put yourself in a position to be criticized by others. Criticized for anything you do differently than them and different ideas or perspectives you might have from them. That's just the nature of being a blogger. I knew that would inevitably happen when I started this blog; I thought the benefit of helping others find resources in their area and providing basic information and links to helpful sites preponderated the negative aspects.

I rarely get negative feedback on my blog The recent email I received was by far the nastiest, the cruelest and most bitter. There's something to be said about hiding behind a computer screen and not having to take accountability for what you say and the feelings who's you hurt. I owe it to the 2 readers out of the thousands I have to address their opinionated perspective that I am a terrible person because of my post "I WOULD Change My Child"

So without further ado:

-Anyone that knows me knows that I am a good mother and I work so hard with my kids, often times falling short. They know that I love and adore them and that I wouldn't change who they are, even if I could. Which brings me to my next point.

 -I DO NOT believe that Autism IS my child. **GASP!!** (Feel free to throw your laptop at the wall, at this point.) How could I say such a thing?, you might be asking yourself at this point. For the same reason that Autism is no longer 1 in 110 children. It's now 1 in 88. How is it increasing? I believe something is causing it, and not that Heavenly Father just believes that we are all AMAZING people and wants to bless all our lives with Autism. There, I said it. If not so, then why is it increasing with each year that passes?

-When I say that I would change my child, I do not mean LITERALLY change the tiny little person they are. Yes, my child may not be diagnosed with a terminal illness or have a drug problem or be bound in a wheel chair as you were so kind to remind me. I'm sorry that you are so offended that I don't think Autism is beautiful. Let me tell you just a few circumstances of some of the Autism moms I know:

Autism mom #1-
Her 11 year old son with Autism wandered out of their locked home at 1 am. The mother heard the door alarm go off, bolted out of bed and through the front door. Before she could finish screaming his name, she watched her son be plowed over by a Ford Pickup. So you're telling me it's not Autism related that this boy didn't respond to his name?...

Autism Mom #2-
Had her nose broken because she was standing too close to her son during one of his headbanging meltdowns. Not Autism related?..

Autism Mom #3
Just finished repairing her dry wall because her 4 year old son with Autism put his head through it; he was trying to calm himself down. Not Autism related?...

Autism Mom #4
Found out that her daughter had been molested for 3 years by a family member. How and why didn't the mom know? Her daughter doesn't speak. Not Autism related?...

Autism Mom #5
Lost her 16 year old daughter because the kids at school thought it would all be in good fun to watch the "autistic kid" trip on acid. Trusting that they were her friends and not being able to discern for herself that she was being targeted, she took it; she had a seizure. Not Autism related?...

Autism Mom #6-Me
My daughter was sick for some time. Why? From fecal smearing. My daughter has PICA, something that affects 5% of the Autistic population. She had sores around her mouth and she was always sick. There were some nights where I would hear her up at 3 in the morning. I then would spend 2-3 hours scrubbing down her walls, shampooing her carpets, bathing her, cleaning out her mouth and scrubbing her finger nails. My point in sharing that is not to say "Oh look at me, look at how hard my life is!" I DO NOT FEEL THAT WAY so tuck away your 2-edged sword, please. Those moments with my daughter while cleaning her up...well I'll just say my heart was heavy and it's some of the times that I have felt the closest to my Heavenly Father. I knew she couldn't help it and I was never, not once mad at her nor did I curse my circumstances.

You see my point? When I say I would take away their Autism I am referring to their Autistic BEHAVIORS that impact their life NEGATIVELY. Autism, for me, ISN'T about making my life easier it's about trying to make their life easier and by THAT I mean teaching them how to discern danger, how to calm themselves and so on.

-In the email I received, well here, let me quote verbatim; I would hate to get it wrong ;)

"Here's the thing. You ARE a flag waiver. You just can't see it because you call it by another name. You are like so many other parents of children with Autism out there, who call what they do "activism", or "advocating", or "teaching awareness". What it really is, however, is a platform to voice their riotous discontent at the crappy hand they have been dealt. My question to the parents who constantly complain about the trials and hardships that come with raising kids on the Spectrum is, "Do you honestly think you have the market cornered on parenting hardships?" Are you kids in wheelchairs? Do your kids have an expiration and/or can they be killed by something as benign as the common cold..."

"...Why am I taking the time to ask you this? Probably because parents with children on the Spectrum who are so in people's face about "try taking a walk in my shoes!" anger me at their short sightedness and limited perspective."

-If I am a flag waver, well then, I surrender. I am happy to be one. I bet there were a whole lot of "flag wavers" behind the Bills that have been passed in 29 States demanding that insurance companies pay for ABA therapy. Not to mention the countless other bills that have provided services for our kids.

-I believe ALL children are Blessings, including my own.

-You asked me also why I would want to take away my children's free ride to the Celestial Kingdom by taking away their Autism. I'm sorry that you have only a partial understanding of the Gospel. Having Special Needs is not the only way. If it were, then the rest of us would be in a lot of trouble.

-Last, people know me. They know my family. They know and see how hard we work with our kids and how much we love all of them. They see how involved and hands-on we are with our kids. They see that we wear a smile every day and we never complain about our circumstances. They see that we bend over backwards to do kind things for other people. They have heard all of the wonderful things that Autism has done for us as individuals and a family as a whole. You can gossip about me ("That Ashlie, she's a big bad Autism flag waver!") as you insinuated you may or may not do, despite never having met me. You can try to put me down and say cruel and harsh things that you would never say to my face nor would you want your friends/family and Church friends knowing you said; just know that people know me, the real me. 

I wish you the very best in your life. I hope that you can bring about all the change you are hoping and trying to bring about in UT, but don't worry; I wont accuse you of trying to make the world a better place for your child, like you did me. Clearly you are calling what you are doing by another name.

4 comments:

  1. Here I am a mom of a 3 year old beautiful Autistic son standing and applauding you after reading your blog. I couldn't have said it any better myself, and I thank you for everything that you have helped me with even though you and I have never met I feel like I have known your family forever. After our sons diagnosis (knowing in my heart that is was Autism) I looked at the Dr.'s face and waited for him to prove me wrong, but his confirmation made me tell myself ok lets get him all the help he needs. I kept telling myself i accept what God has given to me because I was chosen and I wouldnt change my son for anything. But I read your blog and you put right in front of me what my heart secrectly felt but my lips would never admit to or say. I fear everyday for what his life is going to be like and how I need every pair of eyes in the house to be watching him all the time so he doesnt choke on something because he mouths everything. Having a non-verbal child with Autism is so hard to explain to someone who has a verbal child what its like not knowing what your child wants or needs. Not hearing him call mama when i walk in the door breaks my heart and i long for the day that he will call out to me just because he can.
    Thank you for sharing your family with us and please continue to do the work you were meant to do. You are my comfort and the angel I often think of when im having a rough day.
    We all have often said you should walk a day in my shoes to know how it feels and sometimes they feel like awful blisters but once in a while they feel just heavenly and those are the day we give thanks to Him. I wish you and your precious family many blessings. Stay Strong

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  2. Ashlie I am glad you posted this. As parents of children with Autism we often are judged and criticized about what we do, even when we are just advocating for our child's well-being. It is only fair that our children get the help and services that they so desperately need. I just this week had a cousin let me know that my child wouldnt have issues with his autism if I was a good parent. It was heart-breaking to hear that someone who knew my child and saw how he functioned would be so short minded. I believe that our children are sent to us for a reason and that we are the best suited for their issues. You are a great mom and all you can do is your best, and Heavenly Father will take care of the rest. With love,
    Amber Merrell

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  3. Your an ecxellent mommy to your two children. No doubt they'll grow up so smart! Stop worrying about wht others say. They don't matter when you have a fam to care of.

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  4. One word for you Ashlie: Amazing!

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