Wednesday, January 30, 2013

Here in the Real World

Attention Deficit Disorder, Autism, Sensory Processing Disorder; what do these three words all have in common?  They have been, according to some, overused. Are they real problems, or just a demonstration of bad parenting? As the mother of three children who can be described as having one (or more) of these diagnoses, I certainly have a strong opinion on this matter. They are very real.

With eight children,  I know a little about parenting. Not perfect (by any stretch), but I do have experience with neuro-typical kids; most of my kids are neuro-typical. But my kids who are not neuro-typical, they really aren't. Oh, they aren't "that bad." They haven't missed milestones by "that much." But they are missing milestones. And theirs are genuine (at times heart-wrenching) struggles.

When my sixteen month old daughter ripped her clothes off and refused to wear what I'd picked out, I decided that wasn't a battle I wanted to fight. Discovering the reason was the texture of the clothing, I was very glad to have waved a white flag. When my infant son screamed in terror every time he touched water, I got creative on how to get him clean. When my old-enough-to-know-better daughter doesn't understand non-verbal communication, or misses a social cue, causing  everyone around her is uncomfortable with no idea why, it is very awkward.

Whether over-diagnosed or not, the challenges these labels were developed to describe are very real indeed. To suggest otherwise is to minimize and trivialize the at times overwhelming struggles these kids and their parents face. Here in the real world, we can't reduce everything to a lab report or thesis for a research paper. We aren't trying to get anything published in a journal or bring in funding for our university. We are just trying to survive. We need help, encouragement, and understanding. If you can't offer that, perhaps you should spend a day sharing what we experience. Or, better yet, maybe you should experience what our children are experiencing, then share your opinion on how unreal these problems are.

Sunday, January 27, 2013

Treasuring the Moment

Decorating for Christmas is neither simple nor elegant at our house. After seventeen years of decorating with small children, I have learned to be much more realistic about what, how, and where I will decorate. And my girls want to help; because I care more about my children than I do having a beautifully decorated home, I let them. Which means, of course, that the house may look a bit different than I would prefer. It also means, because of my dislike of change, that I can get a bit uptight with the rapid and uncontrolled changes taking place around me.

This year, as we began the decorating process, I found myself very uptight. Normally a fairly relaxed, laid-back person who values relationship over most anything, instead of enjoying the process, I was snipping at my kids and getting irritated with my husband. Then, a realization struck me; I won't have this opportunity forever. My children are growing up, quickly!! Before I know it, girls will be heading off to college, only returning home for Christmas break, and not able to be part of the festivities. In just a few short years, we won't have any wee ones to deal with as we decorate. And then, I will be decorating alone with my husband, our children preparing for the holidays with their own families.

As the realization struck me, I took a step back, evaluated my attitude, and quickly adjusted it. Suddenly, though the only change was in my attitude, I began to enjoy the moment. What had been grating was transformed into treasure. And it was so delightful.

This adventure I am on, parenting special needs children (and teenagers), navigating unfamiliar territory without a map, has stretched me beyond my wildest imaginations and completely transformed my perspective. Life is short, you must make the most of each opportunity, but often the opportunities are neither obvious nor easy to recognize. They often come when least expected and may seem counter-intuitive to the situation. But opportunities must be captured, memories made, and moments treasured. We may never have the luxury of simple moments obviously waiting to be enjoyed, but we can choose whether we will be stressed out and uptight, or whether we'll step back and savor the moment, knowing it truly is only a moment.

Monday, January 07, 2013

Sleeping Beauty and Gun Control

In the Disney version of Sleeping Beauty, the beautiful infant princess, Aurora, is cursed to die on her 16th birthday by a person of influence who was inadvertently left off the guest list for the celebration of her birth. A good fairy, though unable to completely reverse the curse, brought some hope to the stunned parents by bestowing a different gift - the gift of sleep, a "death-like" sleep, rather than death.

In response to information conveniently leaked by the wicked enchantress, the king and queen came up with a valiant but ill-fated plan to protect their precious child; they would eliminate all spinning wheels (the murder weapon) from their kingdom. 

Or so they thought. 

Unfortunately for both the rulers and their daughter, on the sixteenth celebration of her birth, she found a spinning wheel. Not recognizing it (and being under a spell) Aurora reached out to touch the shiny needle. Instantly she collapsed into a deep sleep, along with all in her kingdom, not be awoken for 100 years.

Imagine how differently the story might have turned out if, instead of destroying all the spinning wheels in the country, the king and queen had set out to educate their daughter about said spinning wheels and the threat they posed to her young life? What if they taught her how to use a spinning wheel properly, and how to avoid the sharp end?

Seriously, what if we educated our children about fire arm safety in school, like sex ed?
What if every sixth grader (they learn about sex, why not guns?) went through a gun safety class, including a trip to a firing range? What if they were exposed, in real life, to the consequences of discharging a fire arm carelessly? Who would be able to forget the images of murdered children lying in pools of their own blood, regardless of how they got that way? Many school districts are showing the consequences of drunk driving, by bringing in the crumpled vehicles involved in (often fatal) alcohol-involved accidents. Do you think a similar tactic might make young boys and girls think twice before thoughtlessly discharging a firearm?

Sacrificing our freedoms on the altar of false security (through more gun legislation) is not going to increase the safety of our children!

If gun laws were going to do anything, they should have protected the children at Sandy Hook Elementary, where guns were already against the law

 Instead of taking away the spinning wheels OR guns, let's make sure our children know what to do when they see one!!

Celebrating Simple Things

Until I had a child who didn't meet his milestones, I didn't really think about those questions the doctors always ask at well-child visits. With my other children, everything was fine; no worries. With our youngest son, it turns out, everything wasn't fine. At first, we thought his delays were from being held constantly, because of his severe reflux. But, as milestones continued to be missed, our doctor suspected problems. Those questions turned out to be very important; they identified developmental delays that required special intervention.

Caught, black (permanent marker black) handed!
Thanks to that early intervention, our little man is doing great, improving all the time. It is so fun to see the progress, to see the glint of understanding light up his eyes, or to see him master a task that required extra effort to learn. As our journey through the desert continues, I am learning to celebrate little things. I am recognizing more and more reasons to celebrate, discovering in a whole new way simplicity that is so significant. And that is very fun.

If you are on your own journey through the desert; if you know the pain of a child who struggles, don't lose hope. Regardless of your situation, you can find reasons to celebrate.You can find them, and when you do, invest the energy to celebrate and treasure that precious, amazing moment.