Wednesday, April 1, 2009

Mi Vida Loca

I think that means "My crazy life."

I hope so, otherwise I have no idea what my title is!

I have been a little silent lately on this sweet blog of mine. I blame my silence on many reasons...exhaustion, being over-scheduled, facebook...but there's more too it than that. I've been in limbo.

Waiting, waiting, waiting to be able to put some real information on here about what's been going on in our lives. Waiting until I had some answers, or at least a better understanding. So now I'm jumping in with both feet.


Ellie has officially been diagnosed with Sensory Processing Disorder (SPD). SPD is a neurological disorder that affects how you process the sensations that your body receives. The disorder part comes into play when the brain doesn't process the sensation correctly, and therefore doesn't produce a correct response. Basically there's a "glitch" in the system. This has been a long time coming for us, too long in fact. She's always been our challenge, our "quirky" kid, our handful. She's had many clothing issues (remember the panties!), and behavioral issues for a VERY long time. I heard of SPD a couple of years ago, thought about it, and dismissed it. Then again about a year ago, this time I wasn't as quick to dismiss it, but still wasn't convinced we needed outside help.

Then we went to Disney.



So, long story short, this is what our girl has. I am amazed at how many things she's always had issues with, that play into this disorder. Things I never dreamed about being sensory issues. Like her dislike for amusement park rides, or her difficulty with stairs, or her failure to progress well at handwriting...all a part.

The treatment is Occupational Therapy, and is supposed to be quite successful. The Occupational Therapist says we will be AMAZED in just a couple of months at how much better Ellie is going to be. That we will be AMAZED and have a totally different kid on our hands by next August when school starts back up.

Let me tell you, I am ready to be AMAZED!!!

It's been a tough road for our girl. And us. She gets very angry, she gets very aggressive, she melts down in public, she makes us walk on pins and needles all the time. Always wondering if we're going to do something to "set her off." Always trying to think ahead...Will Ellie be able to handle this? All of that is supposed to get better, and even go completely away with the occupational therapy.

It's hard for me to imagine that one hour a week of this therapy, which is basically playing with purpose, will completely change our girl. But they are the experts. They are the ones who have seen kids like Ellie, so I will choose to believe them and wait to BE AMAZED!

Oh please AMAZE me!

This disorder is hard to understand. Even for me, and I've been reading everything I can find on it! But I came across this info, and I liked the way it was worded. It helps me to view this from her perspective. I put in bold the things that are the most challenging for her. It's hard for me to realize how much she's struggling, heartbreaking in fact. But we're on the right path now, and that feels good. See what you think...

Stanley Greenspan, the author of "The Challenging Child" (1995) has an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input.

He describes it this way: "Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

It's no wonder children with sensory processing disorders feel out of control, exhibit a whole host of behaviors, and have difficulty concentrating and focusing at school!

Now, also imagine being a parent of one of these children. Many parents have expressed how exhausted, rejected, lost, incompetent and alone they feel in trying to live with, and understand, their child.

I challenge you to remember this beautifully painful quote the next time you encounter a child with sensory processing disorders and begin the process of awareness, understanding, and treatment to help them take control of their bodies, minds and self-esteem.

It is so very difficult for them. Let's acknowledge that and do our best to understand and help them!

Let me put this another way for you, from an adult perspective.

I once did a presentation in a conference room full of adults that worked in day care and preschool settings. I wanted them to relate to and understand the children they saw in their classrooms that struggled with sensory processing disorders.
I explained it to them this way...

Imagine if:

You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.

You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair and you fell off 3 times during this training.

Your clothes felt like they were made of fiberglass.

You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.

Every time you tried to write with your pencil, it broke because you pushed too hard.

The different smells in this room made you utterly nauseous.

The humming of the lights sounded louder than my voice.

You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.

The lights are so bright you have to squint, then you get a pounding headache half way through the presentation

Every time someone touches you, it feels like they are rubbing sandpaper on your skin.

You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.

People's whispers sounded like they were yelling.

The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.

You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.

You had to pull the car over 3 times on the ride here because the motion makes you sick.

So that's where we are. That's what we're dealing with. And I am ready to Be Amazed!

And the crazy life continues with Austin and the saga of the ears. He's getting tubes put in on Friday, so I'll be updating on that soon!


Teresa said...

Shelley! What an informative post! I will be praying for all of you...especially Ellie...and I am also looking forward to some AMAZING results! I found the last part of your post so interesting...seeing it from Ellie's! I'm excited for her to gain some control in her life! I'm excited to see what OT can do for her! :)

Alana said...

Great post, Shelley. I'm so glad you are getting some answers and I am praying for quick and AMAZING results!

Love you!

Celeste said...

That is awesome! I am also praying for AMAZING AWESOME results.

Jamie said...

I'm praying for your family too. I'm so glad you are headed in a positive direction.

Janelle said...

Beautiful post! You are on the right track and she is so ready for a positive change in her life. I just know you will be AMAZED! I think you already are!

God has a plan for her. A plan of hope and future! He is taking care of His child. Be amazed at Him!