Living Within Sensory Processing Disorder

 

What is sensory processing disorder?

Children with sensory processing disorder have difficulty processing information from the senses (touch, movement, smell, taste, vision, and hearing) and responding appropriately to that information. These children typically have one or more senses that either over- or underreact to stimulation. Sensory processing disorder can cause problems with a child's development and behaviour.

Who has sensory processing disorder?

Children with autism and other developmental disabilitiesoften have sensory processing disorder. But sensory processing disorder can also be associated with premature birth, brain injury, learning disorders, and other conditions.

(Taken from HERE.)

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Anyone else have a child with this?  I have two.  (The twins.)  It's made life interesting, that's for sure.  If you have a child who lives with this, you know EXACTLY what I'm talking about.

Our son's SPD seemed to improve dramatically when we took him off sugar, but it's still there.  Just under the surface, all the time.
Life needs to stay within certain lines for him to cope well.  It's why our morning and nighttime routines never falter.  He's able to do pretty much anything during the day as long as he knows what's coming.  He's not into surprises.  For him not to lose it completely, he needs a lot of notice of an event that is going to take place, and to be reminded of it daily.  On the way to do something, he will ask repeatedly what is going to happen.  He has to know the plan.

If a plan doesn't work out; if we tell him we're going somewhere, and for whatever reason we can't (for example, if the store is closed), all hell breaks loose.  We have to be very careful how we tell him what our plans are.  We make sure that we say, "We're going to TRY to go and..."  Then he knows that there's a chance that it may not happen, even if we are all counting on it.  Sometimes he still acts out even if he knew there was a chance of it not happening, but it's slightly less intense, and can from time to time be avoided completely.  *This is why I spend so much time making sure that stores are open/the park isn't locked/the exact times Santa is at the mall...and so on.*  It's easier to avoid a breakdown than to live through one.

We also cannot tell him that we're going to buy them (the kids) something unless we're standing in front of it and we can see that they can, without a doubt, get it.  (This could be anything from a mango, to a toy.)  Being told he can have something, and then to find it's impossible (they don't have any!), results in a meltdown.  He doesn't know how to handle it, and so he just doesn't.  What we say is going to happen HAS to happen.

What really grinds my gears is that there are people who see his behavior and assume he's "bad", or "spoiled", when in reality it's not at all.  He's SUCH a sweet and kind and wonderful boy, and if we say that we're just going to look at something (like toys), he doesn't freak out if he gets nothing.  Because it wasn't part of the plan anyway.  No biggie.  It hurts me to know that people judge my son, and me, for something he didn't choose to have.  Children with SPD look like everyone else, and there are no obvious markers for people to use to identify it.  I try not to glare back at the people who feel the need to glare at me in a moment when all I really need is an understanding smile (or nothing, you know?  If you can't manage a smile, just do NOTHING.  It's better than glaring at me...or my four year old son!).

The Boy is under-responsive to touch, under-responsive to movement, he has all but three of the sensory seeking behaviors, he has an emotional dysfunction...yet with all of this, it is still dramatically less than the list he had when he was still getting foods with sugar.  (There are entire lists now that he doesn't have any "checks" on, whereas before, every one would have been checked.)  Sugar absolutely aggravated his SPD, and caused his behaviors to be more extreme.

As for our Older Daughter, she is learning to live within it.  Slowly.  
The type my daughter has is the same type I have.  I think of it as a sensitivity to certain things.  (Perhaps because I've lived with it, I don't find it all that "abnormal".)

She's got hypersensitivity to touch, hypersensitivity to movement, poor muscle tone (born with this), hypersensitivity to sound, hypersensitivity to smells.

It's something we noticed with her from the start, though we really thought it was just "preemie" behavior.  But it never went away.  With her, the world needs to be soft and quiet.  And it needs to smell good.  She is the first one to cover her ears, even in a place that no one else really notices the level of noise.  She hates wind.  A drop of water on her shirt sets her off into hysterics.  She's learned to live with the sound of a lawn mower, but used to scream to the point of her face turning purple if she heard one.  She'll avoid foods that every other person in this house likes, because it "smells bad".  (It doesn't smell BAD, it just HAS a smell.)

It isn't always easy with her because her reactions are immediate and can sometimes seem like they're just out of the blue, but like I said before, we share many of the same traits in what we can and cannot handle.  So I get it.  I can look over at her and know when something is making her anxious just by looking at the profile of her face, because it's making me anxious too and I can see her tense jaw and know exactly how she's feeling in that moment.  But, I have no doubt that she'll make it through life without most people ever even noticing it.  Unless someone is actually paying close attention, it's unlikely that they'll notice it.  She's one of the most amazing people I've ever met in my life, and I know that as time goes on she'll learn to adapt even better than she already has.  When someone does notice, it'll be someone who cares about her.  (Most people don't pay enough attention to anyone else to notice that they can't walk in tall grass.  Ever.  Or that they wear a sweater in summer because the breeze makes their skin feel crazy.)

I've found that people are more understanding with Older Daughter, maybe because her type of SPD works better for them.  I think they treat her more kindly because she's "so sensitive", and when she acts out it's because of something like rain, or noise.  The whole thing plays into their idea of her being a helpless, delicate, "poor little girl".  For some reason, the world around us seems to want to treat her like a victim in this, and at the exact same time treat her brother like he's a terror for having the exact same behaviors that are caused by the exact same disorder.  It boggles my mind.  I'm trying to raise her to be independent and strong and to not play OR BE a victim.  I'm trying to raise my son to be sensitive and kind and be proud of the person he is, in a world set on hating men.  So the whole thing just irks me beyond belief.
Way to label them based only on stereotypes, society.  You suck.


If you want to see if you or your child have any of the symptoms, find the checklist HERE.

Here is another, for infants and toddlers.


I think a lot of people have SPD and don't even realize.  And I think a lot of kids have it and no one has ever diagnosed it, or it was mis-diagnosed as something else.  

I know that when I was first pointed in the direction of this information a couple years ago, I finally felt like I wasn't losing my mind...I knew there had been something different about them, I just didn't know WHAT.  Knowing this made all the difference.  Which is why I shared it.

Read more here:
http://www.todaysparent.com/health/kids-safety/sensory-processing-disorder

http://www.spdcanada.org/

https://myhealth.alberta.ca/health/pages/conditions.aspx?hwid=te7831&

http://www.spdfoundation.net/about-sensory-processing-disorder.html

What You See Isn't Always What You Get.

I saw this posted on Facebook (HERE), and thought I'd share my 2 cents.  Since that's what you pay me to do.  

Oh.  No one pays me.  Right.  LOL  Whatever, here's my opinion anyway.

"MUST READ :) A 24 year old boy seeing out from the train's window shouted... "Dad, look the trees are going behind!" Dad smiled and a young couple sitting nearby, looked at the 24 year old's childish behavior with pity, suddenly he again exclaimed... "Dad, look the clouds are running with us!" The couple couldn't resist and said to the old man... "Why don't you take your son to a good doctor?" The old man smiled and said... "I did and we are just coming from the hospital, my son was blind from birth, he just got his eyes today." 
MORAL..........
Every single person on the planet has a story. Don't judge people before you truly know them. The truth might surprise you."

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I have come to the point in my life that I now actually assume that when I see children acting less than appropriately (and I mean a LOT less--you know the children I'm talking about--mine), that they have some type of developmental/neurological/medical issue I cannot see.  I never assume that it's just a child that has been given too much sugar, or who "needs a nap".  *Both things people have said to ME about my own children.*


My twins both have some sensory issues.  My daughter seems to be either growing into (as opposed to "growing out of") hers a little better than my son is.  She can manage to appear "normal" more often than my son can...but every day is a new day, and every new day presents new challenges.  Some days are easy and great.  Some just are not.

My son still has some problems figuring out how to handle his sensory issues.  His are very different than the ones his sister has to live with, and that presents some challenges in itself.  I don't even know if I can say that he's not "handling" his as well as his sister does.  I often wonder if it's because of the world we live in that his seem worse...the things that surround us on a day-to-day basis are things that can just become overwhelming for him.  And what looks like a hyper-active child acting out is nothing more than a little boy who lacks the developmental ability to control his anxiety.  He doesn't like it more than anyone else does...and he lives it.  So imagine how HE feels.

People cannot see the kids' "issues" just by looking at them.  On the outside, they appear pretty average.  To other people, sometimes I'm sure it just looks like my kids are acting up, and I'm ignoring their "bad" behavior.  But that's not the case at all.


The truth is that when one of the twins get to the point (with his behavior) that random strangers start giving their own ignorant opinions of them, the ONLY way to get them to come down a little bit is to hug them right up to my body, and talk sweetly to them.  Getting upset, (or irritated, or frustrated, or angry) just raises their (anxiety?) level even more.  They need calm to BECOME calm.  And when random jerks who are old enough to know better hurt their feelings, it makes things worse.  


My son seems to take the brunt of the ignorant comments, though.  He is a very sweet and very sensitive child.  Always has been.  And he takes things to heart, even when he really shouldn't.  But he's too young to understand that their opinion of him doesn't matter.  Even if I tell him.  He still just absorbs that negativity.

The whole thing hurts my heart.  My Boy is nothing less than a blessing and miracle.  We're lucky to have him, and this world is a better place for having him in it.  And when random people make him feel like less than that, I want to punch them right in the neck!

This post is being written because of the asshole at the mall yesterday that put his hands on my son and pushed him away from their stroller.  My son ran up to it because he LOVES babies.  LOVES them.  And as soon as he got an arm's length from it, the man (there was a man and a woman with this baby stroller) reached out and pushed him away and yelled, "HEY!  HEY!!"

My son JUST turned 4.  Does he look older?  Yep.  He's tall, and solid, and people assume he's at least a year older than he is.  But the fact remains that he's just 4.  JUST four.  


I understand that sometimes people panic, but seriously to raise your voice at a child and to push them...those are grounds for getting your ass whooped by Momma Bear.  The guy scared my son, and he came running back to me upset.  "That man pushed me!!" he said.  I told him I saw that, and that the man should have kept his hands to himself.  "I just wanted to look at that baby."
I know.  I know.  I told him that sometimes people don't want kids running up to their stroller, and that it wasn't nice of that man to yell at him or push him.  I told him that next time maybe he should ask if it's okay if he looks at their baby, instead of just running up to it like that.  (I hate that I have to talk to my son about this kind of thing at all.  I don't want him feeling like what he did was wrong, because 99% of people just stop and let him look.  But then there's that one dick who messes everything up, and requires me to tell my son that some people aren't going to react well to him.  It makes me so sad!)

Next time he WILL ask.  He's never had this situation happen before (where someone freaked out), so I don't wonder why he did what he did.  And the fact is that he's new here.  If he's never had anyone do that before, he didn't know that could even happen.  But I kind of expect (and rely on) adults to behave like adults, and not like bullies.  I do understand that the man was protecting his child.  But he was protecting him for no reason.  My son wasn't going to hurt that baby.  He just wanted to look.


It makes me sad that I feel like he needs to wear a shirt that says, "I'm going to act how I act.  Please have patience with me.  I'm not going to hurt anyone, I promise!"

He's a loving, amazing, sweet, caring, sensitive child.  And it sucks that to look at him, he just appears average...mostly.  But MOST people see him and don't assume that there's anything "wrong" with him.  They assume he's just "bad".  And he's SO NOT BAD.  He's lovely!!!

So for those out there who don't have a child with any kind of neurological "issue", please have patience and don't assume children are "acting up".  You can't always see what's going on...you don't always know.  And for those of us who DO have children with neurological issues...we NEED you to stand with us.  We need you to have enough patience to keep your hands off of our children.  We don't need to fix something YOU have done to make things 100x worse than they were.

Don't assume our child is bad.  Don't assume we just let them "run the show".  When we look tired, when we have more children than we have arms, and one of them is behaving in a way YOU don't care for, understand that we too wish that they were just being "normal".  Because this is our life; our every single day.  You have to "deal" with it for 30 seconds.  We live it.  So please, please, don't add to it.  Please, when you're out, assume that children have an un-seen "issue", and not that they're just "bad".  Because what's the harm in that??  Give us a smile, or a nod, or some indication that you are standing with us, not standing against us judging us as horrible parents.  Sometimes that little bit of acknowledgment is all we need to pull our socks up and keep moving.  Sometimes it's that one second you took to smile at us that kept us from just breaking down and bawling right there in the mall.  


**And even if a child is "average", and has no special needs, and is "acting up" somewhere...how does it help to give that mom "the look"...the "you need to DEAL with that kid" look?  


It doesn't.  


Smile, and understand there may be more to what you're seeing than it appears.  Or there might not be.  But either way...that mom doesn't need any more pressure than she has right at that moment.  Stand WITH her.  Not against her.