Friday, March 9, 2012

I WOULD Change My Child

Let's be honest... (for 5 minutes)

At 4 am one would think that I would be trying to enjoy every second of sleep I could get my hands on. Of course I am absolutely tired but I find these hours to be the most peaceful in my house. I'm not tripping over rows of toys that my son has so meticulously lined up through out our house, I'm not rushing over to quickly throw a pillow under my kids head before they bang it on our tile floor out of frustration. I'm not de escalating a tantrum or having to rush to my daughter to take away what's left of the receipt she just scarfed down, I'm not pulling peanut butter sandwiches out of the DVD player. It's my time regardless how tired I am to reflect, to update my blog, to spend time with my husband, take an un interrupted shower that's longer than 3 minutes, to read my scriptures or to do Autism research.

I haven't been able to keep my thoughts from how much our lives have changed over these past 6 months since we got the diagnosis for our 2 oldest who happen to be 11 months apart in age by the way! (FYI: Breastfeeding is NOT a contraceptive no matter what your OB tells you ;) I was so adamant about only allowing myself that 1 week to grieve and then moving forward from there. I thought that if I grieved a minute more I would be doing my children a terrible injustice. I thought that I had to say all the right things like the phrase you frequently hear from parents in the ASD Community "I wouldn't change a thing about my child." I seem to choke on those words every time I am put in a position to force them out of my mouth because another person is telling me how sorry they are that my son and daughter have Autism.

You honestly wouldn't change your child if you could?

Well I a freakishly fast second too. I love my children with all my heart but there are a few things I hate. I hate that my daughter will only let me hold her for a few seconds before she pulls away from me. That when she looks at me for the 2 seconds she can muster-she looks through me versus at me. I hate not knowing if I will ever hear her sweet little voice say "I love you mom." I hate worrying about who will look after her if something happens to my husband and I. I hate that she is inconsolable. That even as her mother I cannot calm her with my voice or my touch.

In the mornings when I get her from her bed she is usually pretty tired. So she rests her head on my shoulder and wraps her little arms around my neck as I carry her down to breakfast. That walk from her bedroom to the dining room is the shortest minute in my entire day. It's the only time she shows me affection in a single day. This is my daughter and this is a little piece of her Autism. Only another parent in my position would understand the ice cold sting Autism leaves on your heart at the end of most days.

I hate that my son screams out in agony each time he gets a hair cut and that it ends with both of us in tears. We have to schedule our appointment for when the salon closes so that people don't stare and children don't cry out of fear of my sons reaction. I hate that we have to restrain him while he screams, bites me, cries, throws up, and as his last resort as he starts to feel he's losing the fight-he looks at me with his swollen eyes and tear stained cheeks and desperately pleads with me to make them stop while all I can do is repeatedly whisper in his ear as I gently restrain his little body in my arms "I'm so sorry buddy, I'm so sorry." I hate that I inevitably worry about how other children are going to treat him (and react) because of his extremely poor social skills once he starts grade school. Kids are so mean today and parents tend to be just as bad in some cases. Tell me what decent mother wouldn't want to take this from her child?

We parents spend most days lying to ourselves telling ourselves the same 7 little words..."I wouldn't change a thing about _______" because in reality we can't bear to entertain the thought and the agonizing pain that would surely follow if we were to admit the secret our hearts possess...that we feel we've been robbed of our child and all of the hopes and dreams that immediately flooded our hearts when we held in our arms and gazed upon for the first time that tiny little newborn.

So you might be wondering how I could possibly put a positive spin on this post. Well here it is...these little babies of mine have made me a better person and I adore them. As simple as that. If there had been some sort of pre natal test that would have unveiled that my children would have Autism and I was given "the choice" (I recently read a disturbing article on this matter) there's no question or hesitation for my husband or myself. I love these little sweeties and I would choose them every time over having no children at all. They've taught me patience, how to love unconditionally, they've helped me to appreciate things that would otherwise be considered small to another parent. We don't worry about the tedious things that others our age (and sometimes a little bit older) tend to think about. Sincerely, this little speed bump has only made the connection between my husband and I that much stronger. When it comes down to it, our family unit of 5 is really all that matters to us.

(Above is our new little addition =)


  1. Allison BookstaberFebruary 2, 2012 at 6:49 AM

    Wow. Very touching, to say the least. I sit hear reading with tears in my eyes because I relate to much of what you write. Your beautiful writing really touches me as does your story. You are very courageous and honest.
    As I read about your experience with trying to get your child a haircut, it brought back memories. I went through the same thing with my son. Happily, I can say as he has gotten older, that's gotten better...but I felt like you were writing about me. Really. Thank you for sharing your story. It helps to know you are not alone. :)

  2. Hopefully this doesn't get misinterpreted but you are a beautiful addition to the ASD community. We are fortunate to have you and your words of encouragement. Coming to your blog is different than the other blogs I have followed. Your blog isn't depressing to read leaving the reader worse off than before reading it. You are raw honest but you have a positive outlook. It is refreshing to read that our lives with autism doesn't have to be depressing if we don't want it to be.

  3. You have a gift of writing. It felt as if I were reading my own experience. I'm not a very emotional person but this exposed the feelings I retain on any given day. It will get better as they start to get older.

  4. Thank you everyone for your sweet sweet comments =) ~ashlie

  5. It's no wonder this post is getting published. I saw it referenced on fb by an autism group. I don't have children but this was even touching for me. I have an autistic brother and my mom was very sensitive about it when I was a kid. They were already great parent but her and my dad were brought closer through the experience as was the rest of us. Together my parents helped my brother to become high functioning. He's now married and graduated from an Ivy League college. Only amazing couples are given these children. If Heavenly Father brings you to it He will bring you thru it. You guys have a great family. Thanks for sharing. I forwarded this blog on to my parents.

  6. Ashley, this was a very strong and beautiful post.

  7. wow , you're 100% correct on this , my feelings and many others as well i assume .! i'm new to this whole asd thing, my son was dx pdd-nos, adhd, o.d.d,and just recenty receptive language disorder as well ...! i'm a mess trying to deal with it, he dont sleep really anymore , meds do not seem to work , sugar = speeding, and he dont understand simple commands.. ..

  8. THANK YOU!!! I am so relieved I am not alone in this.

    1. Angela, you are definitely not alone my dear =)

  9. I just barely saw your post on my blog about having my "Welcome To Walmart" on your blog. I am amazed that someone with your writing ability, honesty, etc, would have something that *I* wrote on your blog. Truly truly amazed. This post was beautiful. And sad. And honest. And necessary. I wish that after my son was diagnosed I had written about the grief. That was some of the hardest times of my life.

    I wish every damn day that he wasn't autistic. When people say that they love their child and wouldn't change them, I think, "then why are you getting so much therapy?! Why even try? Aren't you TRYING to change them?" But I bite my tongue because I don't want to take from them something they feel strongly about.

    But I sort of feel like their idiots.

  10. Thanks for a good cry. I love my son to death. We adopted him at birth and he has brought us so much joy!! I too hate his autism. I hate the pain and struggles that I have to see him go through. I hurt for him. So yes, when I see other people say that they wouldn't change their child for anything. Maybe they are in denial, because I don't like to see my child struggle and I would change that if I could. I love your page!

  11. *clears throat*

    I say this with all kindness in my heart--but I am sorry you feel this way. I truly, truly am. I'll explain why.

    I get what you MEANT in your post. And it is touching and heart-wrenching. I know why autism frustrates you so much. Because I AM autistic. I did hate not knowing the sounds coming out of people's mouths were about. I found them utterly frightening. Especially when they would get loud. I was scared of going outside because I couldn't see walls and everything at once--I didn't know what would come near me next. I hated people touching me because it felt like my skin was on fire and no matter how loud or hard I screamed, they kept INSISTING on it. I hated how my mom would FORCE me to look her in her eyes, even though it would make me so uncomfortable that it PHYSICALLY made me ill. I hated that my mom and dad couldn't see how many times a day I said "I love you" because they couldn't understand my language.

    But now I'm 35. I know the words that come out of people's mouth are just that--words. The same as the ones I would read... I taught myself how to read.. I was gifted with hyperlexia (precocious ability to read and to understand complex material, even when not previously studied). That comes DIRECTLY from my autism. Because I've had the experience of coming from MY world into this one--I have had so much in my life to feel thankful for!

    I have two autistic children. And they are my light and my joy. Same as yours are to you. I don't think you would change your children at all--but just change those things that complicate your life. Those things that frustrate you and interrupt your ego, and so on. I'm not trying to be mean--but honest. That's what I see when you, or some other mom, says I hate autism.

    I am AUTISTIC. I do not just HAVE autism. I AM autism. You cannot separate someone's neurology from their personality. It is a part of who we are, just like being a woman is part of who I am. And so when I read "I hate autism"... I read "I hate Heather."

    And that is what made me sad when I read this blog post. That is what broke my heart. Who knows... maybe one day, you will look back and change your mind from a whole new perspective. Maybe not... But I wanted you to know from a parent of autistic children and a person with classical autism... who your children are now, is not what they will always be. Parent the child you have not the one you hoped for. Find joy today. You're not promised tomorrow.

    I know you're still early in your grieving process. I know many in this community would look askance at the idea that we are GRIEVING for children that are alive--but I believe ALL parents--special needs or typical-- go through this process. We just do it on a grander scale. When that dad has a son and pictures playing football with him but instead he ends up with a son who wants to be in the drama club--he will grieve for the child he THOUGHT he had versus the one he does have. It's a natural thing. That's nothing to be ashamed of.

    God gave you these children for a reason and I know not what that reason is. But I hope as you get a handle on this world, and continue researching, He will guide your heart, mind and soul in this journey. It's not easy. No one has answers for you. You're going to have to figure it out as you go.

    I hope to be a friend to you. We can always share perspectives :)