getting some answers

{{this post has been a long time in the making. only because i keep changing my mind on whether or not i want to share. but then i thought to myself...that's what this blog is for. a place to throw it all out there. the good, the bad, and the ugly. plus, then I came across the following article and i couldn't help but post it}}


“When you’re going to have a baby, it’s like planning a fabulous vacation trip --to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

 

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

 

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

 

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

 

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

 

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …about Holland.”

 

                                                                                  -Emily Perl Kingsley

 

 

This one hit a chord with me.

We've been struggling for a long time.

But we're hoping we've found some sort of answers
as Kenley has recently been diagnosed with Sensory Processing Disorder.

 

What is SPD?

We all receive and perceive sensory input through our senses (sight, sounds, touch, tastes, smells, movement and balance, body position and muscle control.) Sensory Processing is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Sensory Processing Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. A person with SPD finds it difficult to process and act upon information received through their senses, which creates challenges in performing countless everyday tasks.  

 

All children can seem quirky or particular about their likes and dislikes, but children with Sensory Processing Disorder will be so severely affected by their sensory preferences that it interferes with their normal, everyday functioning. A child is prone to anxiety, distractibility, impulsivity, and frustration. A child with SPD might act out or tantrum when overstimulated. The need for sensory input such as movement or touch can be so overpowering that the child truly can't control their need to seek it out.

 

Through my own research, I have found some *pieces* of information that couldn't ring truer for our Kenley-girl...(you  know, the kinds of things you read that sparks that "a-ha, lightbulb moment"?)
 

*most kids with SPD are a mixture of both over- and under- sensitive, which explains why inconsistent behavior is a hallmark of the disorder

*a child might appear to be excessively clumsy or aggressive

*these kids' tantrums are so intense, so prolonged, and so impossible to stop

*when a child's behavior is due to sensory processing disorder, punishment and reward do not work as motivators

*special needs doesn't always look special.  children with spd can misinterpret sensory input and may get overwhelmed by everyday sights, sounds, smells, and touch. (this is HUGE for me. kenley doesn't look any different to people around us. but when she is tantrumming or having a freak-out-sensory-moment, that's when I feel others are looking at us differently. when i feel like a failure as a parent and when i feel she is being viewed as naughty or out of control)


I brought my concerns up at the kids' 3 year-well baby checks. So with referrals, waiting, appointments, evaluations, follow-ups, etc. it has taken 6 months to get to where we are now.
(I may share more on that process in a future post. But don't get too excited, we all know what an awful blogger I am.)

So where are we now?

Kenley was referred to Children's Care Hospital & School to receive Occupational Therapy. We take her to Sioux Falls one time a week for OT services. She absolutely loves it!! And between them and my amazing team at work, I have gained a lot of tools, knowledge, and support to help while at home, which is where she struggles the most.

This is a new adventure in our life and we are learning as we go. We are learning to pay closer attention to Kenley and trying to identify her triggers. We're learning how to counteract those triggers and help with more effective ways to work through her anxiety the environment places on her. We're learning how to be better parents. We're learning more about Kenley. As we gain a better understanding of sensory processing disorder itself, we are learning to better understand her. We have to learn how to advocate for her and help others understand. Because in the end, that's what it comes down to. Is understanding.