Sunday, August 17, 2008

Autism and "False" Hope

This is the time of year when parents everywhere are preparing to send their children back to school. As a homeschooling parent, this means something a bit different for me. This is the time of year when I steel myself, not to send my children out into the world, but to once again tackle the daunting task of educating them. Luckily, I am a school junkie and get very excited by things like new pencils and books and art supplies and science kits. But there is always that element of pressure brought on by the fact that these are my kids and I want them to have the best education possible. Because of that pressure, I am always looking for new techniques and methods to better achieve that goal.

The fact that one of my beloved students has autism adds yet another--and more intimidating--layer to the mix. Where he is concerned, not only am I providing education, but also therapy. Ten and a half years after his diagnosis, I can look back on many nutritional, medical, experimental, and behavioral interventions that we have tried with varying degrees of success. Ironically, Austin is the healthiest member of our family--the least likely to get sick and the quickest to heal when he does. But the hurdles of his disability remain stretched out in front of us. And so, at this time of preparing to roll up my sleeves and get back to the business of educating, I am also readying myself to renew my efforts to somehow lead Austin to an independent adulthood.

Throughout my experiences as a parent of a child with autism, I have encountered many experts, and even fellow parents, who believe that the various treatments that are out there offer nothing more than false hope. They would have the families of these children accept the disability and realize that there are certain things they will never be able to achieve. I understand that this type of acceptance may bring comfort to many parents. However, I would rather throw myself into the pain of the hope-disappointment cycle everyday than give up forever on my child. The thing is, no hope is false. Hope is what moves you forward, believing that progress is possible. Living a life of hope can only bring positive results. Even if it means that 9 out of every 10 things I try will fail, I know that I will eventually come across the one that succeeds, even if just a little. Sure, the greatest wish of my heart would be to have my son made whole in an instant. I know that is not likely to happen. I accept my son for who he is, respect him for what he has to overcome just to accomplish things that most people take for granted their whole lives, and love him unconditionally. But I will never accept his disability. It is a mortal enemy that would take my son's whole life from him if I let it. So I fight, continuing to reach for every morsel of hope I can lay my hands on.

Wish me luck!


  1. Ok, I am officially allowed to be labeled as a crier. Here I sit tearing up, as I can sense your determination and love shining through the words. I can see how some parents might find the comfort in just accepting life and others willing to push aside the standard quo. I think you are level headed and at the same time have high hopes and dreams. I can't imagine anyone better to be his mom.

  2. hee hee I was just upstairs putting some laundry away and thought - did I just say standard quo? I believe I meant to say status quo. Sorry for the brain freeze.

  3. :) I so like you! Keep on fighting...Hope is Faith and Faith brings Miracles and one day he WILL be made whole in an instant and then you may have his beautiful all encompassing self with no work on your part at all...

  4. Lorien - what high praise! If I am the best one to be his mom, it's because I've been so molded by the experience. But, seriously, who thinks about their blog comments while putting laundry away? :-)

    Chris - I like you too! You are right, one day he will be made whole. I only hope when that day comes I won't be afraid to hear what he'll have to say about the job I did.

  5. lol...he is definitely one who will tell you what he thinks isn't he Jennifer. I believe he will praise you for not giving up. I believe God has made us so that we all can withstand and roll with the events in our lives. Events surrounding our children, our husbands, our friends all the things that effect our lives and the lives of the ones we love. You are the best Mom for Austin and I believe our Heavenly father has made you the best Mom for him. We are all made to be the best through him. Perhaps we were not the "best" at the time our children are brought to us, in fact I am sure none of us have come to feel we are the best, at least I know I don't, but I know God would not have sent these precious beings unless we had the capability to be the best for them. You are choosing to not "give up" Jennifer and in doing so you are the best for Austin. It makes me happy to think of the day Austin will look you in the eyes with a complete and clear emotional connection and express the deep Gratitude he will feel knowing how hard you fought for him. You are awesome!

  6. Wow, you are my new role model, and for me, that says a lot. I couldn't help but cry reading this. I know that you fight an entirely (and extremely) different and more difficult fight than I do (or ever might) but I feel that your need to have hope is entirely realistic. The only battles in life that are truly worth it in the end are the uphill ones (it just so happens that yours is a mountain :) ). You are an amazing mom!

  7. Aw, you guys are making me blush!

    Rachelle, Austin can definitely be blunt. Sometimes I wonder why I was so eager for him to communicate with me. ;-)

    Lyanna, I had to chuckle at your mountain climbing analogy. When I was pregnant with Austin, "What to Expect When You're Expecting" was my bible. It compared the amount of energy a pregnant woman expends to mountain climbing. It became my tagline throughout my pregnancy. As in, "I can't make dinner, sweetie. I'm climbing a mountain." Who knew all that mountain climbing would continue past birth?

  8. You are amazing! You must know that Austin could not have had a better mother, you are his blessing.
    I have to give a shout out for schools supplies- I love them! Jerry took Hunter this year because I am here in AZ, I am mad- I want new boxes of sharp crayons!
    Good luck on another school year!

  9. Thanks, Amy! It would be hard to miss out on the school supplies shopping trip. I'm sure your Arizona trip is providing some consolation, though.