Friday, September 17, 2010

Accepting Defeat or Rethinking Perceptions?

This lengthy post is dedicated to that wonderful group of moms with special needs children that I get to see once a month. 

Progress. We've come to expect, dare I say 'demand', progress in certain areas of our lives. Specifically, I'm thinking of technology and medical science. Going backward or staying where we are is not the desired option. The goal is to progress, to move forward. To keep us motivated, we can always rely on some marketing slogan or some pithy quote to encourage us to 'expect the best-don't settle for less'. Or something to that effect. Our personal and professional lives are also expected to progress.

Sometimes, the progress is painfully slow and barely perceptible. Specifically, I'm thinking of children with disabilities. It's hard to chant the mantra,"Expect the best" (or whatever the slogan of the day is) when your 12 year old is still not potty trained. In fact, some children may graduate from Pull ups directly to Depends. That's not what we would consider progress. Sometimes it may take upwards of a year or more for a child to learn the ASL signs for "more", "eat", "ball", or "cookie". Forget the tea parties, the cute toddler just want your kid to be able to communicate that she wants a cookie. And when that day finally comes, when she signs "cookie", you will want to give her the entire freakin' box of cookies with laughter and grateful tears of joy streaming down your face. Who cares about the sugar content or the calories. Progress? Yes. The kind that we have come to expect? No. What if the progress was this slow for the remainder of your child's life. Would you still be grateful?

A recent email exchange with a friend got me thinking about my own attitude toward my youngest son's progress, which I touched on in a previous post. My friend has a daughter the same age as my son, and she too has disabilities. My friend was lamenting the fact that the reality of her daughter's challenges is beginning to hit her.

I'm not presuming to speak for my friend. Although we are on a similar journey it's not the same journey. I'm going to go out on a limb and say that sooner or later, those of us with special needs children must come to the realization that our kids are not like typical kids and that we may need to readjust our thinking. As obvious as this sounds, it doesn't always hit us right away. I'm going to go out on another limb and say that sooner or later, some of us with special needs children will come to the realization that progress will be painstakingly slow...maybe even imperceptible. Is this accepting defeat? I don't think so, but it is reality. I've heard the quote, "Reality is what you make it." Baloney. Because in my desired reality my kid would be able to see and talk. If I could make that, I would.

I will never give up praying and hoping for a miracle. But in between praying and hoping there is a life to be lived. There are school lunches to be made, family bike rides, cookies to bake, playing video games, serving at church, and on and on. To my friend: I share your pain – the pain of having an 8 year old who is not like the others. An 8 year old who is not yet reading, who communicates differently, who doesn't have friends who come over and play. I also share your joy – the joy of having an 8 year old who is not like the others. An 8 year old who isn't begging for a cell phone, who is generous with hugs and kisses, who is oblivious to not having friends because family is there. I hope that our joy is never measured by how much progress is or isn't made

Rejoice in the Lord always. I will say it again: Rejoice! Philippians 4:4


  1. Thank you...That's all I can type through my tears.
    Thank you.

  2. I, too, say thank you. Love reading your perspective on things.

  3. Aww! You're welcome. You guys are awesome. Sorry for the know I almost never say "baloney"! :-)



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