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Over Sensed- My Experience and Opinion on Diagnosing SPDs (Sensory Processing Disorders)

There is a lot of confusion out there about Sensory Processing or Sensory Integration Disorders. It seems that every child has it, if they don’t sit still and act perfectly. If they get overstimulated and have meltdowns, it’s because they clearly have a disorder. Right?

Ok, stop. Don’t get your hopes too high about the post. The bottom line is that I am going to share my experience and opinion.  And I’m totally aware that the latter may be flawed and convoluted, but it is my opinion and thoughts as of right now.

In a culture has become increasingly fast pasted and overstimulating I don’t know one person who doesn’t get overstimulated and thus overwhelmed.  It’s become the new “American Way”.   In trying to make life bigger and better we’ve made it louder, brighter to an extreme that is affecting us all. Food is bigger, kids shows are CRAZY, entertainment consumes more of our time than it ever has before.  Yeah. We’re all living the life, alright.

Everyone has experiences like this at some point being overstimulated. Some more than others.  So we have a range.  We have the average American, who, based on their lifestyle choices, is going to experience Sensory Overload in varying levels of frequency.  As many of you know, I dream of going off the grid to minimize my frequency of this, but don’t see it happening for many years.  But you do it, I do it, your next door neighbor does, too.

Just because your child does not behave perfectly, does not mean they have a disorder or that something is wrong.  You don’t have to panic about this. It means they are a child.  Just because we as adults can relate to the panic, frustration and feeling of being overwhelmed that comes with an SPD, doesn’t mean that we have one. You’ll be ok. Promise. I feel like if we look around and pay attention, we will find that we as a country are experiencing Sensory OVERLOAD.  And we ourselves are the disorder. Because out lifestyles are…out of order.

So I do agree with those who  have said it doesn’t always mean you need a label.  But sometimes, you so. And when you do, it sucks.

No matter what you do, you get judgement coming from both ends. You get those who look at you like you are a mess and not normal. They get frustrated by the inconvenience of your needs because they’re different. They don’t know how to handle  you. Then the next day you’ll run into the friend who thinks that all of it is a crock.  All of it is just labeling and making excuses for varying levels of what is really normal.   You’re a wimp, or a bad mom for accepting the diagnosis. You’re selfish for allowing your child to be labeled. You just want to use it as an excuse to make you look better, or to get pity. But your kid is fine, and you’re the problem.

I have actually experienced this. I have people who were a pretty regular part of my life a few years ago who now don’t even communicate with my family anymore.  Because of the two reasons above. Either it’s just too hard to deal with the issues when they don’t know how. Or it’s just too shameful that I dare to admit my child has them.

But let me explain something that you may not have known.  I don’t just speak from experience as a mom. I speak from experience as a child.

I always had a hard time listening, and dealt with so much frustration as a child and even more as a teen.  Because, you know, as a teen everyone assumed that it was because I was CHOOSING not to listen, right?  Darn rebel.  You would think that it may have tipped someone off that as a preschooler I could only sing harmony to any song.  In chorus at 10 years old, I struggled to start learning to hear the melody of a tune, because all I heard was the abstract tones of the harmony.  To this day, I almost always sing harmony. To everything.
When I started college at 17, I had my first real classroom experiences and the frustration was over the top. I quickly became fed up and went to get my ears checked by a specialist.   I was diagnosed with CAPD (Central Auditory Processing Disorder) a way before the  diagnosis of ADHD, ADD, Autism and Aspergers were so common.
Let me explain it for you the best I can. Some people have a neurological disorder where they have loss of depth perception visually, right? They bump into things, can’t tell how far away something is. Well, I have the auditory version. I often can’t distinguish sounds from one another. They blend together and I can’t tell which are close and which are far. When the number of sounds get to a certain number, or volume, my ears short out. That’s what I call it, anyway.  Take your hands and cover your ears tight. Now take them off and on rapidly.  That’s what it feels/sounds like. Not fun.
I often can’t find my cell phone because I can’t tell which direction the ringing is coming from.  I’ve been known to post on Facebook asking someone to call me repeatedly until I answer. Then I stand in the middle of my house trying to figure out the direction the ring is coming from, sometimes needing as many as 10 calls. So glad I have good friends who helped me out with that! As soon as my kids were old enough, I taught them to find my phone for me.  I’m not even kidding.  That was SUCH a relief!

That’s why I recognized that Lucas’ issue went beyond just “being a little slower”.  It was the frustration and signs of being in pain and confused.  And, as anyone who has read me knows, the poop.  So Lucas has been diagnosed with Asperger Syndrome and a Vestibular Processing Disorder. He craves and makes extra sounds, because the vibrations the sound make in his head soothe him.  When he is frustrated, little repetitive noises are one of his main sources of comfort. Sometimes they are NOT so little, as he was doing Chewbaca calls in a perfect repetitive rhythm for 2 hours yesterday morning before I could redirect him to making a quiet lip-pursing noise.  That’s one of my lifesavers of balancing my auditory needs with his  sensory/vibration needs. It’s a great trick learned from a friend who has an older son with Aspergers.  Let them make a noise, but  help redirect them to one that you can agree works for both of you.

So where am I going with this?  Oh, right. Sharing this video and rambling a bit first. That was the plan.

This is a phenomenal example of what it can feel like.   But be aware that MOST people wherever you range from being busy and experiencing Sensory Overload to those who have a diagnosis of Sensory Integration or Processing Disorder.  We could all use to think through what our nervous systems need…

And I have no clever ending for this post. But thankfully, I have the video to share. The End.

This video was shared by a friend on Facebook and got my brain turning, so that’s why I wrote this rambling for your reading pleasure.  The source was HERE on NPR.  It’s a great read. Check it out.
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The Boy and His Poop

This morning I took the crew on a little adventure down the street at the park.  With jars in hand, they were each commissioned to observe nature and find specimens for us to discuss. In particular, insects were high on the list of priority.   Gleefully, the bandits scattered through the park in search of the perfect items to present to each other when we regrouped.
I took in a deep breath to ground myself with the amazing nature around me and feel the wind…what peace. THIS is what homeschool is about.  Bliss.

A few minutes later, the scene changed.  All of the children were clustered around something. And as usual, the something had to do with Lucas.   Three voices, upset and anxious telling him to stop, that’s gross.  Lucas’ in his high-pitched tone of agitation that I’ve come to know so well, screeching over and over frantically, “I’m catching flies. I’m catching flies.”    As I walk towards them to diffuse the drama, I’m thinking, “What’s the big deal with flies?”
Well, the big deal was that he, in his own clever way, found a fail proof way of catching flies.   Shoving dog poop from a careless neighbor into his jar.  And I take a deep breath.  And I close my eyes. Because I can’t attack this kid, even if the last 5 years of my life has revolved around him and poop.
If you’ve read before, you know that poop is not a new issue with Lucas. (there’s a little poop HERE and then a lot of potty talk HERE) Both are from the same week, when he was 3 1/2 and I was determined to be done with his poop issues.  Looking back it kills me.  First, because I now know so much more about this sweet boy and what he needs. Second, because I neglected to come back and share with you the results of the poop wars. For three years. Yeah.
To be honest, I think a part of me doesn’t want to put it in writing.  It makes it more real, so concrete, this computer screen of mine.   For me, it’s putting it in writing that makes things so final. Makes them more true somehow. I’ve hinted about it, I’ve talked about it. I’ve somewhat posted Facebook statuses and links about it.  But, now I write. It’s time.

Lucas is now 6 years old. And he is still in pullups. Actually, he’s growing  out of them and I’m having to look for xsmall depends. WHAT, you say?!?!?!  So much has happened. GI specialist, blood tests, pow wows with preschool and kindergarten staff…. Yes, I sent him to Preschool and K because he needs structure desperately.   And the reason is that Lucas has a Vestibular Sensory Processing Disorder. His nervous system does not tell him how or when to poop without help.    He also has what commonly comes alongside  SPD.  Lucas has Asperger Syndrome.
I am very thankful that he is high functioning. There are pros and cons to that, as well, since many people just see him as a badly behaving child who lacks discipline.  We had an email from a teacher last  year who was upset at how disrespectful he was to her. He just REFUSED to make eye contact with her when she was speaking to him.  Heck, I’m happy if he makes eye contact with ME!! We’ve been working on eye contact since he was a baby!
He can go for hours looking like a completely normal child, and I start thinking maybe they’re wrong.  Then something sets him off. The squeals start, the repetitive motions….It’s there.
As far as the poop, we’ve been told that at his level some children aren’t fully self-sufficient even until 12 years old.  So, we’ve dropped it.  Taking the stress of that out of my day was huge, even if it meant surrendering myself to many more years of butt wiping.  I’ll be sharing more about it, but I wanted a starting point. I needed to get it out there to move on.
And since, the poop has been such a part of this walk, I figured I’d start there, and let it all be known.

We had to leave the park to clean Lucas up. He was devastated because he was certain that his fly trap would be a great success. I’m sure he’s right.  And there comes another facet of having a different level of need in your home.  The disappointment of 3 other children who wanted to stay and play at the park. It’s a unique juggling act that many mothers better than I am have mastered. I’m just catching the balls as they come and throwing them back when I can, hoping that I’m doing the right thing for these little people in the process.

Lucas is a lover, a cuddler, the one who strokes your hair when your head is down.  He comes with a deep insight that’s unexpected.  He’s incredibly intelligent and  I get daily glimpses of what he will be as a man someday.  I look forward to that, because the day-to-day now is temporary.  Every time I clean his mess, I pray. Not a prayer for rescue or healing.  I pray a prayer of thankfulness that my son is happy and healthy.  I remember what my mother always said, “Well, thank god for  good plumbing and a healthy digestive system!”  I take a moment to consider the mothers who have children unable to play, speak, move.  I have nothing, NOTHING to complain about.  My son is perfect, just how he is.

I’m ready to start sharing more, and I think that I will now. Now that I’ve cleared the air… on the poop.

Lucas, aka Ludini, with his fellow escape artist and favorite hen, Copperfield.

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