Kyle's NICU Story in Pictures

Wednesday, August 5, 2009

Sensory Input

kyle fell asleep after a doctor visit. he has a sucker in one hand and a tongue depressor in the other! He also has ankle weights on his ankles. Just a quarter pound on each ankle. This is for sensory awareness. kyle has a hard time organizing his space. it was described to me best like this - and this is really when I notice it too - he has been walking for a while now but still walks like a new walker. very little balance. tumbles over all the time. if something breaks his organization of "this is how I am walking" he doesn't compensate like he should. ie) stepping over or going around a toy, someone approaching him, a small step, etc. Also if we are at home he is organized enough (b/c we are there so often) that if he wants to go down a small step he usually thinks to hold the wall and step down one foot at a time. but if we were at therapy or out at a newer place he would not stop to think "this is a step, i should slow down and go one foot at a time." if he goes up a step he doesn't seem to notice the if he steps back he will go down a step. all of this b/c when his feet hit the ground he does not gain the same input that we do. so this is why the weights will help.

We have already noticed a difference. It is slow going - but it is a difference.

I wanted to ask for opinions out there from moms who have dealt with this. Kyle is a former 23 weeker but doing amazing. I looked up Sensory Disorder or Pedi Sensory input problems on the web but all I could find were suggestions and info for kids that have this very severe. I read over the diagnostics for SID Sensory Input Disorder and kyle only has about 4 of the 18 symptoms. So I feel like I am having a hard time finding resources. any thoughts out there? i have an amazing team of therapists for kyle. I would just like more reading information.


Kyle is a cutie - he waves bye and says bye bye, he says Hi, Up, Down, Please, Cookie, More, Mama, Daddy, Jadon, and he can bring his arm up to his mouth and make a fart noise! I am most proud of that. he also laughs at himself if he thinks he is funny!


Bonky's Mom said...

LOL...okay, as the mom of a boy who is all-boy...the fart skills make me laugh!!! Some skills are obviously developed early in the womb and not affected by prematurity! :)

By the email is

I emailed you, but wasn't sure if it would get caught in spam since it's a weird address.

lookin' forward to hearin' from ya.

RyanAndrew2007 said...

Kyle sure is a cutie. I loved the video of your story. It made me cry and more importantly step back and remember to be very thankful for my little preemie miracle too. Thanks for the beautiful reminder and the testimony of God's love!

Ben & Kara said...

I would recommend "The Out of Sync Child" to understand Sensory processing issues better and "The Out of Sync Child Has Fun" for ideas for play therapy to assist in these areas.

Adam and Andrew said...

Precious boy! Where did you find those weights? Our pt has mentioned using them with Andrew but I wasn't sure how to get them.

Carol Jones said...

I haven't "stalked" your blog in a while, but glad I took the time today.

I have the two books that Kara mentions. You are welcome to borrow them. Just have John stop in my office when he's on campus.

You might also email Heather Blackburn, our Special Needs Pastor at

She might have some advice for you as well.

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Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!