Thursday, October 31, 2013

Learning Together - 'Sensory Stuff'.

After almost 2 years home, we're still learning about sensory stuff.  It's been the hardest special need for us to understand (it makes Down syndrome look like a walk in the park), and it's taken us this long to really figure it out.  And now that we think we've got it figured out, Carter's changing, which means his sensory diet is changing.

Have I lost you?  Sorry.  Let me explain.

Sensory Processing Disorder (SPD - which Carter has not been diagnosed with, although he definitely displays many of the 'symptoms') is just a condition that exists when sensory signals don't get organized properly into appropriate responses.  Kids with another major diagnosis (like Down syndrome or Autism) typically aren't diagnosed with SPD, because they often go hand-in-hand.

What do we mean when we say 'sensory signals' and 'appropriate responses'?!  It's taken us 2 years to understand this, and I'm going to explain it to you in one blog post.  HA.  Here's what we understand.  Throughout your day, you have many sensory experiences.  Actually, those sensory experiences are constant.

For example, right now you're probably sitting at your computer at home as you read this.  Maybe you have the radio or TV on.  The sunlight is beaming in through the window nearby.  Your dog is click-clacking his nails on your wood floors.  Maybe you can hear the neighbor mowing their lawn.   Your dishwasher might be in it's 'whirr-whirrrrr-whirrr' cycle.  Maybe you can smell dinner in the oven, or the fresh laundry pile next to you.

Those are ALL sensory experiences.  Add to that things like a cold chair, a breeze from the ceiling fan, a tag on the inside of your shirt, shoes or socks that feel too tight...and we've just had 12 sensory experiences.

Throughout your day, you and I have these sensory experiences constantly - and our brain processes them appropriately.  We don't feel nervous, jittery, or overwhelmed.  Our sensory factories are working properly.  Our brains receive the sensory experience, categorizes them correctly, and sends them down the appropriate chute.  All of us have quirks about certain types of input (nails on a chalkboard, the texture of construction paper, etc.) but we adapt to those conditions.  As long as it doesn't impact our ability to learn within our environment, it's not an issue.

A properly-working sensory factory! Everything is neat and orderly, and heading in the right direction.
Kids with a sensory disorder are unable to learn and function within their daily routine until they can 'make sense of' or regulate their bodies.  They have not developed their sensory factory yet.  When those sensory experiences come in, the brain gets confused and they end up having sensory traffic jams.  They cannot sort those experiences appropriately.  But the experiences keep coming, only to keep building up.

Once those sensory experiences have built up, we have a sensory meltdown.  These have become less frequent for Carter, as we have learned how to help him avoid them.  Because once we're at the place of a sensory meltdown, it's very hard to 'bring him back'.  Sometimes they would last an hour or two, and sometimes an entire day.

Example of a sensory meltdown :)
Carter's sensory meltdowns usually consisted of constant laughter (forced, but uncontrollable), and total inability to focus on anything.  Even for a second.  He would (and sometimes will) move from room to room, space to space, with no apparent purpose.

I used to think he was being 'naughty'.  Now I understand.  His sensory factory is not working.  He's desperately trying to regulate his little body and brain.  The sensory experiences from his day (week? month?) have built up over time, and there is a major jam.  Or sometimes, he has not received enough sensory input, and he's searching for more.

Carter has been hit with a double whammy.  Kids with Down syndrome frequently have some sensory issues.  Kids who spend their early years in an orphanage will almost definitely have sensory issues.  Why?  Let's look at Carter's first years of life, compared to a baby raised in a loving home.  For our story, we'll call the baby Annie.

A baby's main learning senses include vision, touch (called 'tactile'), movement within space/gravity (called 'vestibular'), and muscles/joints/ligaments (called 'proprioception').  As little Annie lays on her blanket (covered in sensory-rich items like a mirror, tags with different textured ribbons, fluffy fabrics and materials, hidden squeakers or crinkly-tabs), her mama puts a musical toy in front of her.  She may lift her head - which will be difficult for an itty-bitty.  But curiosity (and a cheerleader mama) will encourage her to keep raising her head (vestibular).  Her arms and legs will also move as she gets excited (proprioception).

Random 'Baby Annie' :) - enjoying the sensory experiences around her
As all of this is happening, little Annie is organizing and sequencing all of the sensory information received with each movement of the arms, legs and head.  Her muscles are responding, and with each response she refines her skills.  Eventually, she'll be able to reach out, grab the toy, and pull it towards herself.  Her system is organizing information in order to allow her to learn about her environment.  She will continue to learn and grow from this sensory information.  She will begin to feel comfortable with her body in space.

Now let's talk about Carter's first years.

Carter spent most of his time alone.  In a crib.  On his back.  Maybe a toy was tied to his crib.  He was probably lucky enough to have a cushion on his crib instead of the hard particle board.  He probably had little-to-no tummy time as an infant.  Babies are easier to handle if they're all on their backs - no tipping to worry about.  And when you're a nanny to 5-10 babies at once, you do what's easiest.

This is a typical Eastern European crib.  Actually, it's a little nicer than the norm.
He didn't have a mama to cheer him on, and encourage him to lift his head and grab that toy.  He missed out on MANY sensory experiences, which means his brain never made the sensory connections that it was supposed to.  He sensory factory was never finished.  In many ways, it's still 'under construction'.

So right now, at this moment, Carter gathers information from sight, sound, touch, movement, and pull of gravity like any other child.  BUT.  Those experiences, in Carter's brain, are not organized or processed correctly.  So his brain sends out an inappropriate response.

The brain will respond in two ways.  Either it fails to register and won't respond to the input or sensory experiences (Hypo-responsive), or it will register those experiences too intensely (Hyper-responsive).  Most kids (Carter included) are Hyporesponsive in some areas, and Hyperesponsive in others. But in most cases, Carter is Hyporesponsive.  He is a sensory 'seeker'.  He tries to bombard his sensory system in an effort to gain more sensory input.  He uses his brain to constantly search for information, in order to make sense of the world around him.  Anyone who knows Carter would know that he is ALWAYS on the go.  He moves around constantly, trying to regulate his sensory system by searching for input.

On the go - pushing, pulling, dragging - searching for that sensory input.
Talk about exhausting!

Something we have learned, though, is that Carter knows what his body needs.  A wise, wise mama once told me this and I remember wondering how in the world it was possible.  Now I see it with my own eyes, and it's absolutely true.  Carter knows what his body needs, and he gives us cues. It's up to us to interpret those cues.

When he is seeking out what he feels his brain is requesting, he might jump/push/pull - this is proprioceptive input.  Carter craves proprioceptive input - pushing/pulling a weighted cart or a stroller is highly relaxing for him.  Roughhousing with his daddy would also fall into this proprioceptive category - and Carter just eats it up.  Sometimes Carter might spin in circles - this is vestibular input.  He usually laughs while doing this - which I can't explain, other than it seems like a 'release' for him.  He also loves deep pressure like a weighted blanket or compression vest - this is tactile input.  Even a quick back rub or tight hug can make a difference, and will help him to regulate his sensory system.

Sometimes, you might see me 'hovering' over Carter.  It might look like we're not willing to let him explore his environment, and you might wonder why we don't just let him run 'like the other kids'.  Because he is always in search of sensory information, he will go where his sensory system takes him.  At church, it might be out the front door to the parking lot or into the fellowship hall to swipe cups and plates full of food off the tables.  In the store, it might be down the aisles and out of my sight.

I'm not hovering.  We're not overprotective.  We need to have eyes (and usually a hand) on Carter - at all times.  It's not a matter of us 'teaching him' how to stay by us.  It's a matter of helping him build that sensory factory to a place where it works effectively, and his body won't be constantly craving sensory input.

You might see me hugging him or squeezing him super tight.  He might even be struggling to get free.  You might wonder why I don't just let him free and 'leave him alone!'.  When we can sense that he's searching for that sensory input, we try to give it to him in ways that are appropriate for the environment.  Giving him a cart to pull around the sanctuary wouldn't be appropriate during church (although Carter LOVES to run around the sanctuary when it's empty - we do it often!) - but a big tight squeeze gives him some good tactile input.  If we're lucky, a few of these throughout the morning might just hold him over until we get home :)

You may have heard the term 'sensory diet' before.  Basically, this refers to all the sensory input that we provide for our child on a daily basis.  It's the intentional, sometimes planned sensory experiences that we immerse our children in.

Right now we are not very consistent with Carter's sensory diet.  It's a little willy-nilly, and we just work on giving him what he needs, when he needs it.  However, I think a more organized, planned sensory diet would bring some noticeable changes in his sensory seeking behaviors. We'll get there :)

Some of Carter's favorite sensory activities include:
Pushing or pulling a little shopping cart (preferably outside!).

The beloved cart.
To add some extra heavy work, we sometimes toss some heavy toys inside! 
Running with a noisy alligator pull-toy around a 'track' (we had a nice 'track' for him to run around throughout the rooms of our old house - here at Mimi & Poppy's house he runs around the island.  Thankfully, we'll have an island in our new house!).
Reading books or watching the ipad under his weighted blanket.
Playing with water beads (Please tell me you've used these! They're awesome!! Thanks Auntie M & Uncle T!).
Taking a bath or shower.
Chewy (fruitsnacks) or crunchy (pretzels) foods.
Jumping on a trampoline (or a bed!).
Anything rhythmic - a train going round & round the tracks, rowing/rocking a toy boat, flipping a switch on & off, opening & closing a cabinet or door.
Scooping colored noodles (or anything small - legos, beans, pebbles)

We'd love to get Carter to a place of enjoying the swing (right now he really, really dislikes it - so we're trying not to push pun intended!).  This would be a great opportunity for him to get some sensory input in the mornings before school.  This is something we plan to work on once we're in the new house.

Used to love it.  Now hates it.  Bummer.
I also want to build him a light table once we're in the new house (I just haven't told Jake yet...!).  I even started a Pinterest board called 'Light Table' - so it's pretty much a done deal :)  Carter seems to crave visual input - he likes seeing things in different lighting situations (in front of a lamp or flashlight, or against the window), so I think a light box would give him that input that he seems to crave.

I'd also like to start things like this (this video cracks me up - its a sweet mom who is trying to show how she uses the weighted ball - and her son is doing the recording.  It's a hoot.  He sneezes, and tries desperately through the video to get his stuffed animal in the frame.  Poor mom wants to yell 'KNOCK IT OFF!' I'm sure.  But of course, she's on camera...ha.), and also some therapy brushing.  I'm not going to go crazy with the brushing - I'll just start it once or twice a day and see what happens from there.  You can search 'OT Brushing' or 'Sensory Brushing' on YouTube - but it's basically using a soft-bristled brush to literally 'brush' his arms & legs.  It gives lots of sensory input and can help to regulate his body.

I've wondered if we'll just have sensory stuff going on forever, or if Carter will outgrow some of it.  I'm not really sure there is a definite answer to this question.  But I like to think about it this way: When Carter first came home, the concept of using his own spoon to feed himself was completely foreign.  I had many frustrating 'lessons' with him.  He wanted nothing to do with it (because even at 3.5 years old, the nannies fed the children with a spoon for each meal).  After some time, he became more comfortable with the idea of holding the spoon, and eventually he would attempt to spoon feed himself his yogurt.

At first, it was a nightmare.  Yogurt spilling everywhere, wobbly spoon, sometimes scooping upside down.  I wondered if he'd ever get it.  But with lots of practice, and loving corrections from a cheerleader mama, Carter can do it.  Carter uses a spoon like a pro.  He holds it correctly, the spoon isn't wobbly or shaking, and the food makes it all the way from the bowl to his mouth.

Our hope is that in the future, Carter can receive sensory input, process it correctly in his brain, and give out the appropriate response.  Once those connections are made, and that sensory factory is built, we hope that we can 'back off' a little bit and allow Carter to be more independent in all areas of life.

Until then, we'll just buy stock in water beads and have sore arms from all the roughhousing and big tight squeezes.

I can't explain this, and haven't found any concrete evidence, but Carter's sensory 'stuff' seems to cycle. A few weeks ago, we had a very rough week.  He just couldn't get his little body regulated, no matter how much input we gave him.  Then one day, he just mellowed out and was focusing on tasks again.

As much as I've tried to wrack my brain, I can't think of anything that we did differently.  I want so badly to find the 'magic potion' that will instantly regulate him - but that just doesn't exist.  It's a process, and it seems to randomly cycle.

Some weeks suck (sorry, but there's just no other way to say it...) and some are fantastic.  And the sucky weeks help us to appreciate the really good weeks.  So we take it in stride, and try to always meet him where he's at.


Now you know that when I say 'sensory stuff' - this is what I mean.  It's a big, complicated mystery to us still.  And maybe it always will be.  But I've done my best to explain it to you - and typing it all out in black & white has helped me to understand it a bit more, too.

For more information about 'sensory stuff', you can check out these helpful sites.

Sensory Processing Disorder Foundation 
A Child's View of Sensory Processing (YouTube video) - really helpful if you're still feeling confused!
Signs & Symptoms of SPD (Parent Fact Sheet)

Each child is so very different, and these are just the things that we notice in Carter.  I hope this post has been helpful for you in understanding a little bit more about sensory processing and how Carter is affected by it.

One Thing I Know For Sure: Phew! :)


  1. Sarah struggles to this day with Sens Overload. The good news is that at 27, most of the time she can actually tell when it's about to happen (a meltdown) and she will seek a quiet place where she can rock herself and comfort herself.

    As an orphanage kid with chromosome issues and autism, this is still our biggest hurdle. We have learned to never go to a restaurant during rush hour. We have learned to never go to the mall during Christmas or Thanksgiving rush. We have learned to keep our home quiet and consistent so that when she comes home from work each day, she can "deflate" from the overload of her day.

    Add to this issue the issue of tactile defensiveness and we have a few "phew" moments as well. But we've learned - I can sense immediately - she can tell me her "ears" hurt - I scope out environments continually .....if you haven't already learned the signs, you will and God's grace will be sufficient for it all.

    Carter is a blessed little boy to have you both to love and nurture him. Well done, Jake & Ash.

  2. Something about that shopping cart photo makes Carter look so MATURE! Not a toddler. but a BOY.

  3. Great post! SPD really is the most complicated special need we've experienced. Our youngest son had spina bifida, and it's nothing at all in comparison to the SPD that two of our kiddos have experienced. It's great that you figured out some of this fairly early on. It tooks us a number of years to understand what was happening. It helps so much just to know what your child is experiencing and then to have some tools to help him/her.

  4. This is the BEST summation I've read of the "sensory stuff". My older is on the spectrum, my younger might be, and I feeel like I just gained a focus on how to help them. We've had the OT eval for both of them, and been given ideas for a sensory "diet", but I wasn't sure WHY we were doing some things, or what the goal was. You've cleared a lot of it up beautifully...thanks!

  5. Hi, just came across your blogo through searching for SPD on Google blog search. Your write-up is very interesting. I'm an adult with autism (and sensory issues), most hyperresponsive but sometimes hyporesposnive. y issues have changed over tiem. As a child and teen, I'd make these weird crawling-like movements in bed and loved to swing. Now I mostly fidget when hyposensitive. My meltdowns are still quite bad. Anyway thanks for explaining all this. I particularly found your write-up about the orphanage environment interesting. I spent the first three momnts of my life in hospital because of having bee born prematurely, and back in the day, kangarooing and such were not as commonplace as they're now. I didn't have it as bad as Carter did of course. Anyway, Carter is lucky to have you.

  6. Just wanted to let you know that we're adopting from Ukraine. We're pretty excited about it!!!


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