Wednesday, January 11, 2012

The Stop Button

Imagine spending your entire life at a carnival that just happens to be located in the middle of Chuck E Cheese. I kind of think that’s what life is like for Caden with autism and sensory processing disorder—sounds are louder, lights are brighter, smells are stronger, and life frequently spins out of control. There’s a lot of discussion about the stress associated with having a child on the spectrum. In fact one recent study found stress levels akin to those of soldiers. You won’t hear me disagree with any of this but I think it is easy in all of this mess to forget that no matter how much stress we feel, the stress that the individual with autism is facing is unimaginable.  

Yes my life is stressful. I work full time at a job that is highly competitive. I have two special needs kids, a service dog who needs constant training, 2 other dogs (who don’t have the slightest word what trained even means), and a parcel of cats. Oh and don’t forget the ant farm. But I have an ability that Caden doesn’t—I can hit the stop button. I can walk out of the room and let my husband or daughter deal with a melt down, I can call a friend and rant for a while, or I can write a blog that lets me express my feelings. Caden never gets a break from autism or sensory processing disorder; even sleep is challenging for him. Limited communication and understanding of complex emotions mean that he doesn’t even have true freedom of speech—he can’t explain how he’s feeling or what’s bothering him most days. When we are lucky we can read the signs but who knows how many things we guess correctly. For this reason and many more we are now focusing much of our attention on Caden being able to express at least basic feeling words –we’ll continue to worry about articulation and vocabulary but honestly more than anything we need to give him freedom  of expression. 

If he had this vocabulary and ability I have a feeling Caden would have a lot to share about his last few days.  

I think he would probably tell us that while his mommy desperately hoped Saturday's infusion would go smoothly, the IV start was worse than any of us imagined.  Not even valium helped the process that eventually involved Caden being wrapped in a blanket and held down by 5 people before the nursing supervisor could get the needle in. After that though, he was a rock star and never bothered the IV or fussed over any of the vital checks or oral meds.  


I think Caden would probably share that having Elf start Kindergarten full time without one of us on Monday was like his best friend finally getting to go to school with him. And he would have to mention that Elf has handled everything like the absolutely amazing super dog that he is (and that his mommy will be devoting an entire blog with pictures to the Kindergarten process and how to handle it).

And I'm pretty sure he would share that his first ever swim class was a lot of fun even if he did alternate between the phrases "I'm doing it" and "I'm scared."
More than anything else, I'm SURE that he would want to point out that this is no ordinary tale but instead is a tale of a boy and his dog (or should that be a dog and his boy)!