Itchy Scratch DON'T Touch ME!

I thought I'd try to explain another one of the senses that cause the biggest problems for Kathryn.  This is what overwhelms her everyday... all day long.  It is called Tactile Defensiveness.

Tactile Defensiveness is defined this way: "Children who have tactile defensiveness are sensitive to touch sensations and can be easily overwhelmed by, and fearful of, ordinary daily experiences and activities. Sensory defensiveness can prevent a child from play and interactions critical to learning and social interactions. Often, children with tactile defensiveness (hypersensitivity to touch/tactile input) will avoid touching, become fearful of, or bothered by ;

textured materials/items
"messy" things
vibrating toys, etc.
a hug
a kiss
certain clothing textures
rough or bumpy bed sheets
seams on socks
tags on shirts
light touch
hands or face being dirty
shoes and/or sandals
wind blowing on bare skin
bare feet touching grass or sand
(as defined on Sensory Processing Disorder.com)


It is because of her issues in this area that finally sent me looking for answers to her odd behavior.  You see, she HATES socks.  I mean HATES them.  The tiny little seam at the end by her toes makes her CRAZY.  Seriously.  We have literally spent 30 minutes pulling a sock on and off trying to get just the right "fit." Usually it ends in a meltdown with her crying and asking not to wear them.  I went in search for seamless socks and a friend of mine found a website that sold them.  I was so excited.  When I went to the site I realized it was a site for kids with Autism and SPD.  I was perplexed and began reading.  After about an hour and following various links from that site, I realized that Kathryn was not just odd but that she probably had SPD.  Honestly it was like a light shown down from heaven and pointed the way to the answers.  I was so thankful. 

So... back to our struggle with Tactile Defensiveness...it is so hard to find any clothes that "feel" right to her.  When she was younger and I didn't know she had SPD we would force her to wear what we wanted her to wear.  What a mistake... but now we know.  She would spend all her time being miserable and totally unable to concentrate on anything but the itchy - scratchy clothes she had on.  She was so easily brought to a total and complete meltdown.   

I guess what makes me really sad about this is that she LOVES to play dress up and to look fancy.  But it is hard to dress like that when all the fancy clothes feel so itchy and terrible to her.   Now it seems all she wears is the softest cotton t-shirts and leggings.  She looks pretty ratty-tatty most days, but she is comfortable and with the comfort comes the ability to think more clearly and to be less agitated and for that... I say HURRAY!  Now don't get me wrong, I will spend hours wandering from store to store feeling the inside off all the dresses or shirts.  I am on a mission to help her feel good and look as cute as she really wants to.  At this point she is honestly afraid to try any new clothes.  It takes a good week for her to give something new even a try.

Another example is a hug or kiss or a light touch on her shoulder to show affection.  She will pull away in a total "fight or flight" response.  She will hit or throw her arm out to block the unwanted and offensive touch.  It isn't that she doesn't love you or crave affection from you, it is that it feels like sandpaper scratching her skin.  Who wants a kiss that feels like that?  The touch really must be made by her initiating.  If she initiates it, then she knows what to expect.  It is that simple.  I'm learning how and when to ask for a hug or to accept the high fives when then are offered as secret super kisses. 

She is getting Occupational Therapy to deal with this.  One of the techniques we use is the Wilbarger Brushing Protocol  It allows us to give deep pressure input to her by way of a soft bristle brush.   At first she HATED it... but she now realizes it helps.  It is one of those things I say, "I don't understand how it works, but I know it is working."  We do it before school, after school, and before bedtime.    Some of the other techniques being used in OT for her is that she will sit in a huge tub full of dried beans and rice with her legs exposed so that she feels all the sensations.  There are "prizes" hidden in the beans and so she digs with her hands to find them.  Again... it is all about de-sensitizing her to tolerate that which feels intolerable.

It is so hard to explain, but if you ever witnessed her complete and utter meltdown because another childed brushed up against her or put a hand on her shoulder and she will break down in tears.   Hard to believe but it is so true.

Well... that is the SPD lesson for today.  So just remember,  say hi to her, tell her you love her and if she jumps in your arms and gives you a hug, consider it a triumph.  Feel extra honored and blessed, but please don't take it personally when she chooses not to be hugged or kissed.  It may have been an extra stressful day and she may just be in sensory overload and the thought of one more touch is unbearable. 

So that is where we are Right Here... Right Now

Falling out of chairs and other Olympic Events

There are days when I think, she is just so normal and we are having such a great day.  Then ten minutes later she has literally fallen out of her chair as she is eating dinner and then the meltdown starts.   And of course she knocks over her drink in the process and there is a mess everywhere.  She is crying and stomping upstairs to go to her room because she is embarrased and angry.  This begins a few hours of getting her to calm back down. 

Yes, she falls out of chairs and trips over her own feet and misjudges where the table is and loses her balance.  I can not tell you how many times I've seen her fall for no apparent reason.  If falling out of a chair was an Olympic event, she would have a gold medal. 

The reason is that one of her senses, the Proprioceptive sense is... well, off.  Proprioception is defined as; The ability to sense stimuli arising within the body. Even if you are blindfolded, you know through proprioception if your arm is above your head or hanging by your side.  Your body can sense where it is in relation to the ground.  I allows you to walk heal to toe and not fall over or lose your balance.  Kathryn can not do that.  She has Proprioceptive Dysfunction. Her OT (Occupational Therapist) was excited to tell me she actually walked heal to toe for 3 steps before she lost her balance the other day... we were all excited. 

We have Kathryn in a beginner gymnastics class that she attends once a week.  She has enjoyed it but it is getting harder for her now and she does not want to go.  She can not do a cart-wheel and struggles to walk the balance beam, and many other activities, but it is such good practice for her.  I know later today when I pick her up from school she is going to give me a REALLY hard time and beg me not to go to gymnastics, but we will go.  It is just the right kind of work her body needs to be doing.  No, it may not be as fun as we had originally hoped gymnastics would be when we first signed her up (pre diagnosis).  BUT it is helping and she is improving... slowly. 

Proprioceptive Dysfunction is just one of the many aspects to SPD.  I just wanted to share with you one of her many struggles.  With OT she is building strength in her muscles and teaching her brain and muscles to "talk" so that she will begin to not feel and be so clumsy.  

Again... it is just the beginning but that is where we are  Right Here...Right Now.

Sensory Processing Disorder... beginning our journey

Well, it has been so long I really don't know where to begin.  I have been almost afraid to start blogging again because there is so much to say and I find it hard to put into words.  It has been over 2 years since I was seriously blogging.  It was great and I loved it but then I began working again and I was just unable to blog and keep the family and house going. 

I'd say we have had a  few big changes in our life since I last put it all out there.  I am no longer working (woo hoo), we have a new addition to our family, Spencer.  He is 10 months old and our favorite entertainment these days.  Our other big change is that our daughter has been diagnosed with Sensory Processing Disorder (aka Sensory Integration Dysfunction).  It is the end and beginning of sorts.  It is the end of the frustration and questioning.  The wondering, "what is going on with her" or "why is she so different, other kids her age don't act this way."  These were the questions I've been asking myself for a few years.  I didn't have the guts to say them out loud - EVER.  I just quietly, secretly wondered. 

Then she began Kindergarten...

Everything changed.  We knew something was different.   It was too hard NOT to notice or talk about it.  There is so much I could say to try and explain but I think these pictures may say it all...

First day of Kindergarten

First day of 1st grade

 They sum up the two expressions she has most.  Anger/frustration and  being totally overwhelmed.

I'll go into more in the blogs to come, but for now, we know... it is a neurological disorder that she will struggle with the rest of her life.  Wow, that was hard to swallow... it still is.

She is in Occupational Therapy twice a week to begin to help her learn how to cope with how her body feels in this world around her.  To help her not feel overwhelmed in new situations;  help her put on her socks without a 30 minute battle to find the precise way to wear them so they don't drive her crazy all day.  She is OVERWHELMED by almost everything around her.  When you can't stand the feel of clothing on your body and all you can think of is taking them off, well it makes it hard to listen to the teacher.  Or if you can't stand to be lightly touched or brushed up against and a classmate accidentally brushes against you in line and you automatically react by yelling or hitting them as a defense mechanism... well, you can see where that would get you in trouble.

We are all struggling at our house to understand this.  But it is a NEW beginning.  I am reading all I can to understand what I can do to help and what will make life more tolerable for her.  I am learning to think 5 steps ahead to cut off a meltdown before it happens.  I'm trying to learn how to discipline a child who is out of control because her body doesn't feel what others feel and a child who is so easily brought to a rage that all I can do is hope she doesn't hurt herself or anyone else.

In the midst of it all, there is a smile, a glimmer of hope.  Today is a good day.  She had OT this morning and loved it.  She actually came out of school today with a smile on her face... that has not happened in a very long time.  

Everyday is a new day, I thank my God for that.  I also thank Him for all of this because he knew long before we did that this would be a struggle... a trial if you will.  

  James 1: 2 - 5

² Consider it pure joy, my brothers and sisters,^[a] whenever you face trials of many kinds, ³ because you know that the testing of your faith produces perseverance. ⁴ Let perseverance finish its work so that you may be mature and complete, not lacking anything. ⁵ If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.

I'm exhausted.

I'm overwhelmed.

I'm starting over... we are learning how to parent all over again and it is... hard. 

But we are trusting that God will get us through and give us wisdom to help guide and encourage her.

 But this is where we are.    Right Here... Right Now.