Life with Coco and Gigi... and Jack-Jack too!

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What Sensory Processing Disorder is REALLY like.

A kind reader wrote to me about this fantastic blog post. The Kludgy Mom blog posted about what life is like with SPD.

Kludgy Mom


Here is what she wrote:

Very few things will convince you what a miracle your brain is more than studying it.

It’s amazing! But if you’ve ever taken any sort of classes that teach what it does and how it does it you’ll find yourself sitting at a table suddenly convinced that if you don’t think about breathing that your body will stop because for heaven’s sake, it’s too much! How can a brain do it all?

Without you sparing so much as mental whisper, your body engages in hundreds of cellular processes that get oxygen where it needs to go, move your blood around, digest the bagel you had for breakfast and rebuild the skin cells that you scraped off your knuckle when you tried to fix the curtain rod with a butter knife instead of a screwdriver.

But more than that, it’s taking in hundreds of messages from your ears, your eyes, your skin and your nose. Your ears filter out the sound of the leafblower next door. Your eyes communicate that the light is bright so your pupils contract. Your joints tell your body that you’ve shifted too far in the chair and your backside scoots without you noticing. Your skin detects that it’s cooler and your hair follicles constrict to preserve heat.

And what were you thinking about while all that was going on? You were wondering how the heck Kim Kardashian gets that damned glossy hair.

You didn’t think for one second about what your senses were telling you, did you? Nope! What leafblower? Lori there is not a leafblower out…oh wait, yes there is!

Ha!

Your senses – sight, hearing, taste, smell, touch and proprioception (which takes information from your balance system and your joints that tell you where you are in space) send signals to your brain all the time. Dozens per second! Your brain reviews them, filters them, files them and reacts to them automatically. Effortlessly. In fact, most of that information won’t even register consciously because your active thinking brain wouldn’t know what to do with it all. Your nervous system is like the best gatekeeper ever, keeping those pesky sensory signals away from the advanced cortical processes.

But what if a brain doesn’t know how to do that? What if a brain can’t filter out the riff-raff, can’t figure out where to file things, and doesn’t know what to do with those signals when they show up?

That’s what sensory processing disorder is.

Imagine that every signal comes in at full strength. Imagine not being able to filter out the lawnmower two houses down when you’re trying to listen to someone on the phone. Imagine that the touch of seams from your clothing feeling like barbed wire. Imagine each position you sit or stand in becoming uncomfortable in a matter of seconds. Imagine squinting in pain when the overhead fixture floods the retina with light because the message to the pupils to contract got lost somewhere.

Ow. Yes. Ouch.

Sensory processing disorder is a condition that exists in anywhere from 5 – 13% of kids, and is seen in boys more than girls. It can exist in only one sensory area, or several. It can affect communication, mobility, fine motor management, reading and learning. It can exist by itself, or it can exist as part of a larger disorder. A huge percentage of kids on the autism spectrum have some type of sensory processing disorder.

Imagine a little one – a baby turned toddler – and turn his sensory systems into a giant screen TV with the sound turned all the way up sitting on the floor of a bouncy castle. What does development feel like for him?

How can I learn to walk when the floor is wobbling?
How can I learn to hold things when they’re never as far away as I think they are?
How can I learn words when everyone is shouting all the time?
How can I learn speech when I can’t even pick out the words?

As a speech pathologist, kids with auditory processing disorder often make their way to me. Auditory processing disorder is just that – when the information that comes in through the ears doesn’t get filtered, sorted and dealt with properly. A kid with APD may do just fine early on, but once they’re in a classroom environment all heck breaks loose because too much is coming into a system that only knows how to cope with one or two things at a time. But often, APD is hidden in a bundle of sensory challenges that create a really hard learning situation for a child. And then early development of speech and language is an uphill climb.

Developmental specialists, occupational therapists and speech therapists, work to create a an environment where the system learns the developmental skills it’s meant to in an environment that presents stimulation in manageable pieces. Skills that a typically developing child would learn simultaneously are worked on one at a time. Assistance is given to facilitate success then gradually withdrawn until a child has mastered the skill all by herself.

A brain needs to know how to cope with the information it receives, and sometimes this ability just doesn’t exist the way it’s meant to. People who can help present it slowly, gently and systematically turn the world of a child with SPD from a place of chaos into a place of order.

Until the four-year old discovers how to work the satellite receiver. Then it’s chaos again, but you’re on your own with that one.

If you want more information about language development, visit Your Child Talking. And to learn more about SPD, I recommend checking out the SPD Blogger Network.

2 comments:

ferfischer 11:46 AM  

Wonderful! Cici's sensory issues are not the highest priority for us, but we have to remember them when in stressful situations for her! Sometimes I forget and then I pay for it! (well, truly, she does)

Lori 10:33 PM  

LOVED this so much! Our Madison had SPD and I find it SO hard to explain to others what it is like for her- this is PERFECT! I am so glad I read this! I think a told about ten people about this explanation and will have to repost on my blog so I can help others understand what SPD is all about! Thanks for this!

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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