2012年8月24日 星期五

Zachary's Tale - A Journey Into Sensory Disfunction

The time on the clock says 9:30; I look down at my sleeping little boy, whom I have just quietly rocked to sleep. He is still latched on somewhat, comfort nursing. As we rock I stare down at him and wonder what his future might hold.

Zachary is my 27-½ month old son, and has been diagnosed (I hate that word; to me it some how implies that there's something wrong that medicine could fix) with Sensory Integration Dysfunction and delayed speech, as well as having some feeding or eating issues. These diagnoses were made about 6 months ago with a team of qualified therapists and specialists.

Life with and for Zachary is not at all like the life I had envisioned for him. Of course as a new mom, you have all the hopes, expectations and desires that every new mom has. Also, with having an older child, my work in a preschool and being a nanny; I had an idea of what was to come. I thought I knew to expect talking, walking, fine motor skills, eating on queue as well as other things. It all seemed so laid out in some sort of master plan, at least it did for all of the kids I had ever seen before.

Around the time my son turned one I began to really take notice of little differences in him, differences that most first time moms might not have noticed until much later. One thing I noticed was his lack of wanting to eat baby foods (he was still nursing for most of his food, and even today nurses for a good portion of the food he takes in). His inability to fall asleep easily (it can take him between 30 minutes to 2 hours to fall asleep) and his lack of making little baby noises (Zachary was never a "babbler" and at 27 months has JUST started to babble) struck me. Even his ability to walk was off (he was always bumping into things). He was a SUPER active (almost over-active) little boy who craved motion, especially in climbing, still does.

At this point, I decided to turn to several close trusted friends, whom all suggested the book, "The Out of Sync Child". While reading this book, on almost on every page, on almost every area I was shaking my head in agreement with just about everything that was being said! "YES" I thought, finally something that described "my child," something that could give me ideas that enabled me to help him, and where I could go to get help for him! I had finally found something that "made sense". Every aspect of Zachary's life seemed to some how make sense; even things I did not think were connected, I learned were! Every area touched on within the book seemed to directly (at least in some part) correlate with what Zachary was doing and/or seemed to be feeling. How he was acting or reacting to the world and life around him finally started to make sense to me!

So, about half way though the book, I called my state program Early Intervention. We set up a meeting for 5 months later; it seems nothing in the "system" works fast. On the date of his evaluation, he was formally given the diagnoses of Sensory Integration Dysfunction, with a speech delay.

For us Zachary's sensory and speech issues follow us all day long, every day.

So could you walk a mile in his shoes?

Maybe you could.. That is, if you ever got your socks on "just right." You may need to have them taken on and off five or six times to get the seams so they lay "just so" and the tightness around the leg to be "ok." Then you would need to scream though putting on a fleece or cotton union suit, because you can not communicate to anyone, what's wrong with this particular outfit. Then, while it's being put on; you pull, yank, cry and even scream (sometimes hitting, if it is extra painful) until the suit gets on perfectly so the seams are "ok" or the tags are not sticking you in the back.

Maybe you could.. if your mommy would tell you three or four times before you change activities, making sure you heard and understood. Repeating herself over and over, because the lights are in your eyes, your sister is breathing and talking, or the fan is on; making it nearly impossible for you to concentrate on what she's saying.

Maybe if you understood that the texture, smell and taste of most foods, would be too much for you. So much so that meal times will be nearly impossible for you to cope with. But knowing that you're one of the "lucky ones", your mom is still comfortable with nursing you, so you at least have a good form of nourishment. Since you would nurse anywhere from 4 to 10 times a day.

Maybe if you heard EVERY little bump, burp, and voice no matter where they came from within the house. All those noises crowding into your mind would be making it nearly impossible for you to concentrate on the most simple of tasks, from playing to learning. Being unable to communicate to let anyone know that any of them is even bothering you.

Maybe if you could crave putting everything into your mouth, because you need that form of stimulation. If you really had NO way of communicating except for grunting, or crying. You'd have no way to let the world around you know anything about what was going on in your head, your thoughts or feelings. No way to show that you're feeling totally lost.

Maybe if you picked incessantly on yourself, your "boo-boos," and fingers until they bleed, without even feeling the pain of what you're doing. Or if strangers looked at you, rolling their eyes, or pointing there fingers at you, because you're grunting instead of talking or you're hitting yourself instead of playing.

Maybe if you could not last at a single task longer than two or three minutes, all the while hating transitions and screaming, crying and throwing a fit at every change that had to be made, no matter how small. If you got sick every time you got into the car because of the lack of control. If you could climb to very high places and just jump off, without the fear of being hurt. If going into a crowed place literally freaked you out, for no other reason other than all the people. If the idea of pouring water, or anything onto your head or into your face sent you spiraling into a tailspin of screaming and clawing for a breath, because you believed that you were being suffocated.

Maybe, if you could live every day, feeling, just like this, you could. But I don't, for one second, think so.

To look at Zachary, you would think "no problem" he's a normal little boy. However, that's not the case, what I've described is just a small piece of what my little boy goes though EVERY minute of EVERY day. I don't think you could do it, nor do I think you would want to.

The therapists he works with now are helping a HUGE amount. Zachary is now using some sign language to talk to us, is babbling, and is much more willing to try foods and other things that make him "ick-a-fied". It is, however, a very good thing that I got him into the program at his young age. Research shows that working with a young mind is much easier than working with an older one. Young children are felt to have a "plastic" brain, meaning that it can still be rebuilt or changed. The older a child gets the harder it is to change the behaviors and structure.

One of the huge battles kids like Zachary face is that they appear so "normal", there are no "tell tail signs" that there is something "amiss" deep within their little brains. So people look at them and think, "normal, no issues" then start to think there's something emotionally wrong with them.

In general terms, Sensory Integration Dysfunction is basically the inability for the brain to process the information that is brought in though your senses (whether those senses are internal or external). The dysfunction happens in the central nervous system deep within the brain. So basically it's when a "glitch" occurs, and the brain can not analyze, organize, connect or integrate the sensory messages it is being sent. Internal or near senses would be; vesicular sense (the inner ear) which processes information on movement, gravity and balance, the tactile sense (skin) which processes touch, as well as the proprioceptive sense (muscles and joints) which process information about the body positions and body parts. The external or far senses would be smell, touch, sight and sound.

The end result being that the child (or adult) suffering from Sensory Dysfunction can not correctly respond to sensory information, in turn making meaningful consistent behavior nearly impossible for them. Where a "normal" child just has it, the child with a sensory dysfunction has to work, and work HARD at achieving it. The child can have an over sensitivity, under sensitivity or both (which is most often the case.)

Children like my son, who have sensory problems, are literally fighting an internal fight with themselves every day, only processing half of what the world around them has to offer.

Maybe, you think you have the abilities to walk around in my son's shoes..

However, I don't think you could walk in those shoes..

Not because the shoes are too small but because..

You're not special enough.

Jennifer Sprague, co-owner of "Attachment Parenting Products with High Top Baby Designs" High Top Baby Designs [http://www.hightopbabydesigns.com]. She has several years of teaching experience, working with infants through adults and has a passion for helping children live happy, healthy and secure lives. Jennifer has been a nanny, daycare provider, teacher, and is currently studying to become a Doula and a Lactation Consultant. She enjoys spending time with her two wonderful children, Aubrey and Zachary. "Contact Jenn of High Top Baby Designs" Jennifer [http://www.hightopbabydesigns.com/contact-us.htm] is also an advocate for peaceful parenting everywhere she goes. © 2005 High Top Baby Designs. All rights reserved.

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