I want to blog about autism this month. To share information, but also mainly to put a face, a reality, to the statistics and news blips you're bound to hear during this awareness month. But I'm finding it difficult to harness the words because autism isn't just a disorder or disability.

It's my son.

I could tell you that autism is the fastest growing development disability in our country with 1 in 88 children affected.

I could tell you that it is more common in boys than girls. (An estimated 1 in 54 boys and 1 in 252 girls)

I could tell you that although research has shown us a lot over the last five years and has identified more than 100 at risk gene factors and although we know that there are environmental triggers, we still know precious little about autism.


But this is really what I want you to know. Autism is a battle. Everything about it is a battle...a fight...a struggle. It's causes...it's treatments...insurance...to medicate or not...gluten free or not...educating yourself...educating others.

Sometimes you battle yourself. You fight for a shred of patience to not respond or react to the behavior. You battle regret when you can't find it. You fight with every fiber of your being to find the key that will unlock a particular situation for your child. You fight a constant doubt that you are doing the right thing...doing enough...making the right choices because your child can't.

There are times when you actually battle your child. You beat back the dragon that seeks to pull him inside of his own head and close him off from those around him. You fight to engage him...to force him into the world that exists behind a glass wall that allows him to see but not fully be a part of that world. It's taking a sledgehammer day after day to things that hinder communication...to understanding...it's moving rocks and boulders to create a road from where we are to where he is.

We fight day in and day out for our son...not because he is broken and needs to be fixed but because we know he is fearfully and wonderfully made. God handcrafted this child of ours and caused his brain to work differently. And it is for our good. Sam adds dimension  and texture to our lives. He adds a perspective that enriches and humbles. It's child like faith...it's simple and uncomplicated...beautiful and precious. We fight not so much for him to understand us but so we can see what he sees and be where he is.

Honestly, it can be exhausting. There are times when I am not sure we are up for it. That it's too big...too much. But then I remember that we aren't doing it alone. God has graciously placed us in community; one full of people that love Sam and seek his good just as much as we do. They encourage and strengthen us. They look for ways to be a part of Sam's world.

And that's how the battle is fought and won. That's what you need to know. That is what families who are affected by autism need...community. They need to know they aren't fighting the battle alone.


I want to end each of the autism posts with a Sam story. I really wish you could know him...he is so funny. This is probably one of Rob's favorite stories to tell about a conversation he overheard Sam having with Claire:

Sam: Hey, Claire let's play Rudolph the Red Nose Reindeer!

Claire: Okay

Sam: You be Rudolph and I am going to laugh and call you names.

Claire: (Realizing that this doesn't really sound fun.) I don't think I want to play anymore.

Sam: No, I'm not going to let you play.

Sharing with Photo Story Friday and Paula's No Rules Blog Party.


18 Comments

  1. I have worked with a few kids with this condition and I agree, the isolation for their families due to people's lack of understanding was one of the hardest challenges they had to face

    Mollyxxx

    ReplyDelete
    Replies
    1. Sadly, I've even seen it with families...they don't know what to think or expect and so the pull away. Also, one of the reasons I think we've had success with Sam is the four siblings he has. We sort of make up our own community :-)

      Delete
  2. I think you are rather inspiring. And so is Sam.

    ReplyDelete
    Replies
    1. I appreciate the kind words, Cecily! Some days are easier than others and some people have it far more difficult that us.

      Delete
  3. How many days have I battled with myself to have the patience to not react? It is difficult sometimes. Thank you so much for sharing.

    I, too, am a blogger and have a son with autism. He will be 22 next month. It has been a struggle since, when he was first diagnosed, it was still a very rare phenomenon and resources were few and far between.

    BTW, I am friends with your sister - and she referred me to your blog. We used to go to HS together, but haven't seen each other since then. It's nice to make your acquaintance.

    ReplyDelete
    Replies
    1. It's nice to meet you too, Alicia! I wish I could say thank you and have it convey what I feel for parents of autistic children who pioneered the way fro those of us who followed. God bless you for not giving up on your son then or now!

      Delete
  4. he looks like an amazing kid. thanks for stopping by :)

    ReplyDelete
  5. Hey there! Stopping by from from the Blog Hop! Just wanted to let you know I am now following you via Bloglovin' & GFC :o) Hope you'll check me out too! You can find me here:

    Blog url
    http://www.croppedstories.blogspot.com

    Bloglovin'
    http://www.bloglovin.com/blog/3718883

    ReplyDelete
  6. Sam is handsome! Reading this makes me proud to call you friend... we need more Warriors in this world. I know that Abba Father sees how you battle for each of your children.... there is nothing more powerful than the prayers of a momma.

    ReplyDelete
  7. Thank you for sharing your struggles yet I also hear the blessings loud and clear. Those pictures are amazing ... what a beautiful boy!

    ReplyDelete
    Replies
    1. Thanks, Lori! I'm glad the blessing part came through because it is hard at times but we love him and wouldn't change our life at all :-)

      Delete
  8. Dear Marty
    It takes a special mom like you to raise on of our Lord's special ones. Tante Corrie Ten Boom used to say that 10 of us is not worth as much as your Sam to our Pappa in heaven!
    Blessings

    ReplyDelete
    Replies
    1. Thanks, Mia! He certainly enriches our lives.

      Delete
  9. Thank you for being so open and honest! Honestly, I don't personally know anyone who has been given this kind of responsibility, but I am sure there are some in our community that I have not met yet! For me, the biggest fear I have is not knowing enough about this to be a real help. Kind of like stumbling around in shoes too big...wanting to fill a place, but realizing how much bigger than me that may be! To help, but not to be a hindrance. sigh. I love how you view Sam as a "blessing in disguise!"
    Keep fighting! From what you've been writing, I think you and your family have already won with your beautiful attitude! Hugs!

    ReplyDelete
  10. Thank you so much for sharing...my son also has autism, and man oh man, these kids are gems!!

    ReplyDelete

I appreciate any thoughts you'd like to share...it makes our visits so much more enjoyable!

Looking for something?