My thoughts on “fixing” Autism!

Please take a few minutes and watch the video below.  My entire post below was inspired by this video.  You might want to have some tissue with you!

Was that not super powerful?!  I watched this video last week and it immediately got me thinking.  I read the comments that people wrote about it and that REALLY got me thinking.  I called my mom and my sister separately and discussed in great lengths the feelings I had not only about the video, but mainly about people’s comments on the video. I cried through most of both conversations.  I want to share some of the comments that I read between YouTube, Facebook, and other Autism websites.

-“We must embrace people with Autism, not try and fix them!”

– “Loved the video, until the last line.  Hated that he used the word fix!”

-“My child isn’t broken, so I don’t need to fix them.”

-“Nothing is wrong with my child, so he doesn’t need to be fixed.”

For starters, I must say that I personally thought this video was WONDERFUL!  I loved every bit of it.  The first time I watched it, I missed an entire segment because I was sobbing.  I know the reason I cried so hard was because I was seeing my own feelings on those index cards.  I’m so thankful that this wonderful father took the risk of being completely vulnerable and made this video.  I think it will do wonders for educating people about what our lives are like.  I especially am thankful that it has caused dialogue not only in the online autism community, but within my family as well.

I have several thoughts on the wording that Lou used at the end of his video.  He wrote “In the meantime…I have a promise to a little girl to keep.  That I would do everything in my power..to “FIX” her.”

1)  The word “FIX” is clearly in quotation marks.  I believe that he did this intentionally.  I do NOT believe that he see’s his daughter as a “broken toy” that can be fixed.  He comments earlier that he is doing everything he can to help his daughter “Be the best Bianca she can be”.  Shouldn’t we ALL as parents be doing this?  Working to help our children be the best that they can be? Whether or not they have some type of disability.

I also believe he is talking about helping to “FIX” the way that the world views Autism.  That is one of the goals of me starting this blog.  I wanted to share our story and hope that not only would it encourage other people walking a similar journey as mine, but also educate those that didn’t know a whole lot about what goes on in our world.

The main thing that I hope is that we don’t let semantics take away from the absolute beauty of this video!  This man clearly loves his daughter and THAT is what matters.

2) The comments above that we need to embrace people with Autism and stop trying to fix them really bothered me.  The words themselves didn’t upset me as much as it was the clear defensiveness in which they were spoken.  I agree that we need to be accepting of people with Autism.  I accept Skylar completely for who she is and if she never functions any higher than she is at this very moment, I will not love her any less.  Also, if she were to eventually function at a much higher capacity than she does now, I would not love her any more than I do at this moment.  My love for her is not based on what she can do or how high she can function.  She is my child, my precious gift from God, and I firmly believe He gave her to me.

Let me be clear though….I will NEVER stop trying to help Skylar function at a higher level.  Some might say I’m trying to “fix” her. We have chosen from the beginning to try to help Skylar in any way we can.  I think back to 9 years ago when a doctor told me to accept the way she was and that nothing would ever really help her.  I remember another doctor who told me that only “quacks” believed that a special diet could help their kids with Autism.  I know that a lot of people ask themselves “What if” questions.  I do too.  But I believe my “What if” questions are different.  I think “What if I had listened to that doctor who told me that nothing could help her?”  What if I had not tried the Gluten/Casein Free Diet? (which she responded amazingly well to; I will post about these results in the near future).  “What if I had listened to all the negative people who told me that we were wasting our money on crazy therapies and treatments that were considered experimental?”   Let me tell you friends, I can live with my “What if” questions.  I don’t know that I could stand to ask myself “What if I had just tried that therapy?”.

I have known many people who have children with Autism.  Many of whom have become near and dear to me.  I have never once judged those individuals who have chosen not to do all the experimental treatments that we have tried.  I believe that is a personal choice.  I appreciate that they haven’t criticized us for the choices that we have made.  We have never once wished that we had our money or our time back from any of the treatments that we have done, even if we didn’t see results from it.  You see, we had to try it or we wouldn’t have known whether or not it could have helped Skylar.

3)  One thing that I feel I need to address that might very well upset some people is the comment that children with Autism have “nothing wrong with them, and don’t need to be fixed”.  I do not agree with this.  When I think of the word “wrong” the words “not right” immediately spring to mind.  When Skylar regressed years ago, I remember telling the doctor “Something is wrong with Skylar.  She has lost language, is not making eye contact, and seems to be a completely different child.  I just know that something is not right!”  I do not believe that me saying that is in any way not accepting my child.  I was desperate to get some help.   I think finally admitting that something was wrong & receiving the diagnosis of Autism put us on a path that got us the help Skylar needed.

After watching the “Fix You” video I mentioned above that I spoke with my sister, Jenny.  I shared some of my frustrations with the comments that were made and she point blank asked me…”Julie, if you had a way that you could heal Skylar from Autism, would you do it?”  I remember not even hesitating as I answered “I sure would!”  That doesn’t mean I don’t accept Skylar and her Autism.  It just means that I want so much more for my daughter.  I want her to have the opportunities that I have had.  I want her to be able to get married, to have children, to pursue a career in an area that she loves.  I have had people ask me “Well don’t you think she could do all of that?” And my response is usually, “you obviously don’t know Skylar very well.  She is almost 13 years old and she can not tie her shoes, completely bathe herself, or remember to take the medicine that keeps her from seizing.  So no, I don’t think she could do all of  that.”  She most likely will always need care and that was something that we accepted many years ago. If Skylar lives with us for the rest of our lives, we will blessed immensely because of that.  However, if I had one wish, it would be that there was no Autism.   If I could spare another family from walking this road, I would do it in a heartbeat.  That is who I am and I will NEVER apologize for that!

People ask us all the time what we will do with Skylar as she gets older and becomes an adult.  And you know what, I am never offended when people ask me that, because I believe that they genuinely care about her future and her well-being.  I think they want to understand more about our hopes and fears and I love them for that.  I love to share with people our thoughts on how we believe we will tackle the future with an adult child with Autism.  We have some really great ideas brewing.  (That’s another post my friends.)   But we also know that God holds Skylar’s future in His hands.  One of our favorite verses in the Bible is Jeremiah 29:11 which says “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  And that, my friends, is all we need to know!

Blessings!

JuJu

Edited to add: *I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently in the 20′s.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*

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24 thoughts on “My thoughts on “fixing” Autism!

  1. This was a powerful blog, Julie, and leaves me even more determined to do everything we can do to help life be fuller for sweet Skylar. I will not let down in sharing this blog and your passion to help other children, parents, grandparents and family members to have HOPE! I will continue to work towards a cure for Autism and Cancer. Looking forward to time with Skylar and Hailey next week and a chance for you and Chris to have some alone time together. That will be good! And then on to 9 days of the Albuquerque Balloon Fiesta to sell lots & lots of jewelry for the hyperbaric chamber. Love the blog so keep it coming!

    • Thank you mom! You & dad have been our biggest supporters in all aspects of our lives. We can’t begin to thank you enough for the unending support both emotionally & financially. I foresee BIG things for this sweet little girl!

    • Thank you Christine! I think this is such an important topic to discuss. You can still love your child & accept them fully while still fighting for a better life for them. I’m thankful to Lou for such a wonderful video that shares that message!

  2. Very moving. I cried. I am Bianca’s gramma. And you do indeed understand what Luis was saying, the points he made. We accept Bianca as she is. But I, too, will continue to help “fix” her—rewarding her with a hug and a “yeah!” when she uses a word or follows a command, responding immediately when she clearly communicates a need or want, laughing with her, loving her, setting a boundary when necessary–in other words, helping her be the best Bianca she can be. She is a much loved child. We love her for what she can do, for the loving, happy child she is, for who she is. Yes, I wish in my heart and my fantasies that there would be a sudden complete cure or treatment discovered for autism. And I will continue to hold that hope and do what I can to help awareness & research. But (as you said) even if her autism were taken away, cured, I could not possibly love her any more than I do now. Thank you for your comments and blogs. Skylar is a very lucky girl to have such and involved and loving family.

    • Hi Cheryl! Thank you so much! Bianca is truly blessed to have such an amazing family supporting & fighting for her. I’m certain you are so proud of your son and what he’s doing to raise awareness and educate people about autism. I am so thankful to have a mom & dad who do everything in their power to help Skylar. I’m sure that your love & support mean the world to Lou & his family!

      Blessings,
      Julie

  3. Beautifully put! I would give anything to remove the barriers my 2 boys face as well as those I see around so many other children I know. Do I love my boys? Absolutely! Am I proud of them every day for their achievements, talents, and sweet personalities? Every minute!
    And as my oldest (now 16) approaches adulthood I am ever grateful that I listened to my instincts and ignored well meaning but unknowledgable doctors & educators and sought out the treatments that would help him become the amazing young man he is now.
    I have hope, I’ve seen incredible change, I caught myself thinking this morning what a great father he will be.
    Fixing the world’s view, fixing the causes of Autism, fixing the mindset that our children can’t have a future, repairing their future is exactly what I will continue doing.
    ~Michelle

    • Michelle, thanks so much for coming by and reading. I can hear the hope in your words and can’t even begin to tell you the joy that brings to my heart. Your boys are so incredibly blessed to have a mom who I’m sure will fight with all of her being to make this world a great place for them. Here’s to an incredibly bright future for our kids!

      Julie

  4. The video was made by my husband. You have NO IDEA how grateful I am that you have expressed a true understanding of his use of “fix”. You summed it all up better than even I could have. I must say, reading your blog made me cry even more than watching his video did. Thank you for being an inspiration…

    • Thank you Elsa! What an incredible team the 2 of you must be. The video is absolutely beautiful & I’m thrilled that it is creating dialogue in our community. I truly hope that everyone sees the absolute love and devotion shown in this video and don’t get hung up on wording. Blessings to your entire family. I look forward to following Bianca’s journey.

      Julie

  5. Your insight into this video is exactly what others need to read and share. Knowing Lou personally, I know that he is a wonderful father and that his children are loved like any child would dream and want to be loved and cared for. I got frustrated seeing some of the comments above that were posted when he originally released his video to all. Having my own perception of where he was going with the ‘fix’ word, I couldn’t understand why some people weren’t seeing deeper into the video. Sometimes in life there are people who just read in black and white. They take every word for granted and sometimes miss the symbolism and the deeper power that words can have together. But finally accepting the old adage that you can’t please everyone, I overlooked the handful of comments. Ultimately his intention was not bad in any way and came from a complete place of Love for his Bianca. Many factors became a catalyst for the making of this video I imagine. Even George Lucas has his critics. But like you somewhat mentioned at the beginning, this video evokes conversation and deeper thought and awareness into the reality of autism. It is a good thing and can hopefully bring to light the topic of Autism to a bigger audience. It can also hopefully bring to light that we need to give more attention to Autism as well as far as research and how treatment and insurance companies operate in regards to Autism. Please keep up what you are doing!

    • Thank you so much! I was so moved by Lou’s video and knew immediately that his love for his daughter and family must be strong. It is a beautiful video and a great insight into our lives. I’m thrilled that it is causing discussion and would love for everyone on the planet to see it. My prayer is that we will see the video for what it is and what it was meant to do and not get sidetracked over a couple of words that have so many different meanings.

      Blessings,
      Julie

  6. Amazing…thanks for sharing that video and your story. I was definitely crying as I thought of the dozens of students that I have had over the last few years that are diagnosed with autism. Thinking about their families, the struggles they go through on a daily basis and the fact that so little is being done….I plan to share this with other teachers in my building. Very powerful. Thanks.

    • Thank you for reading & sharing our story Kristen! I can’t tell you how much compassion and understanding from teachers helps our family. Some of Skylar’s former teachers are truly some of my very best friends today.

      Blessings to you!
      Julie

    • Thank you Stephanie for reading our story! As a military wife I applaud you for all that you do. Thanks for encouraging your readers to be real & honest. It’s not easy, but it is truly liberating!

      I look forward to following your story.

      Julie

  7. An impressive share! I’ve just forwarded thbis onto a friend who had been doing a little homework on this.

    And he iin fact bought me lunnch because I found it for him…
    lol. So aklow me to reword this…. Thank YOU for the meal!!
    But yeah, thanx for spending time to discuss
    this issue here on your web page.

  8. The most gifted alumni and students from the program have been touring with
    her as the ‘Mutter Virtuosi. The Voice fans on Thursday night got a special performance
    by one of the judges. [Note: This is the second in a series of articles about violinist Anne-Sophie Mutter.

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