Communication

A Day in the life of Brayden.... Communication

    As a parent when your child is sad you are sad.  It doesn’t matter if they are 2 or 42.  Your heart hurts.  As a parent we want to make everything better.  When you have a child that is nonverbal you are very in tune to his behavior, his cries, and his sleep patterns.  When something is off he is unable to say, “My tummy feel icky, I stubbed my toe, or I am starving.”   About a year ago Brayden was climbing on the kitchen counter.  I had long since finished supper and the dishes were done.  As I stepped toward him to tell him, “he needed to use his talker and we can’t climb on the countertop,” he let out a blood curdling scream.  Something was hurt.  I quickly checked him over.  I assumed he had hit his knee on the drawer handle, his head on the cabinet.  As a mom you can identify a child’s different cries.  This was hurt cry.  He didn’t want me to hold him, that was unusual.  As I was checking him from head to toe for bruises, blood, or a scrape he ran off down the hall.  In a moment he was back.  He bit his hand and ripped all the skin off the palm of his hand.  He had severely burnt his hand on the stove.

Communication has always been my number one priority for Brayden.  Birth to 3 introduced up to pecs (picture cards that we velcroed to the fridge, door ect.)  He’d pull the juice picture and hand it to us if he was thirsty.  He did well requesting with that but as you can imagine taking a picture laminating it and velcroing it was a kind of overwhelming.  That is when Mindy, the Cadott speech therapist,  introduced us to Touchchat, (a talking program that is an app on the iPad.) That really opened up endless possibilities.  He currently is using a new talking program Proloque to Go2.  (New program, if he is like me he wants to throw it, How frustrating to change up your voice.  It would be like me handing you an android phone when you are used to Apple.  All you want to do is make a call but you can’t find the button.). Proloque to Go makes it more like a phone as you can scroll.  However the tablet is great but when you don’t know about feelings, can’t read,  are in water, the tablet overheats, freezes, or the battery dies your voice is gone.  Often times he can’t find what he is looking for or it isn’t loaded. If you see me sometime, maybe Brayden’s buddy night, ask me to see his tablet.  Remember you can read but use his tablet to ask me for popcorn at the ballgame.  You would really appreciate what he has to go through.

From my view point:

This past weekend Brayden was very dysregulated.  We call it Brayden destruction mode. He was running around hopping, jumping, and throwing things.  I could tell something was off.  Friday night he woke up about 4 am and continued to be up for the entire Saturday.  When 3 am came Sunday morning and he still had not gone back to sleep,  I knew I had to help this little boy.  I tried to fix it by offering him food and drink I tried squishing him, pushing him on the swing, and opening up the sandbox so he could sift.  When all of those actions failed and he didn’t want bacon I knew something really had to be  terribly wrong.  I started to rack my brain about what the problem could be.  As I thought I remembered Kelly, one of his therapists had mentioned that he was walking on his tip toe on his right foot Friday.  I had noticed that he had a small sore there.  He kept having me reach down and scratch it with my hand.   I thought maybe it was a bug bite or a sliver.  On Saturday I did try to look further at it but he was like a wild tiger.  I did pick and squeeze it a little, I  thought it was just a blood blister.   After two nights of sleeplessness I realized something was bothering him and I needed to examine his foot closer.

We started at breakfast letting Brayden know that we needed to fix his sore foot.  We told him that daddy was going to look at it and fix his foot.  It might not be very comfortable, but we would be gentle. We knew this would be an all handsome deck effort.  As I cradled his head, sung quietly, and told him dad was going to make his foot better, Ava held the bandaid and Abby his other foot and Zachary was just opening up random bandages to stick on all his boo boos. (He bought princess ones at the store, Chad was thrilled.). As Chad prodded his foot with a tweezers we realized that he had a sliver of glass in his foot.  I am sure it was extremely painful.  He had no idea what was wrong.  He didn’t know how to identify or understand what was happening to himself and he had no way to communicate to me.

I often wonder the thoughts that go through Brayden’s head. I wish that I could understand.

From Brayden’s view point this is what I imagine is going on in his head.

    I wish everyone could understand me.  Can’t they see that something is wrong.  Something is wrong with my foot.  I feel like bugs are crawling all over me.  Maybe if mom will scratch it is will feel better. It is achy, owie, that didn’t help,  it is worse.   I can’t step on it, it feels like needles are poking through my foot.  I need to get rid of this pain.  I look at mom for help.  She gives me a big hug, I do like her hugs but that isn’t helping my foot.  I can tell that she knows something is wrong.  She is trying to help.  She hands me my tablet.  What am I supposed to do with this?  I have no idea what is wrong.  Mom asks me if I am hungry and I want bacon.  No I don’t want bacon, how is that going to help the pain?  I throw the bacon on the floor.  I need to get out of here.  I want to play but every time I step I feel like a thousand needles are being shoved into my foot.  The door is unlocked, thanks Zachary.   Maybe if I swing, Maybe spinning in circles will help.  That usually does, I just want to play but all I can think of this pain. I feel like bugs are crawling on me I have to get out of here..  What is that noise, it is buzzing I can’t stand it. The neighbor is mowing his lawn.   Make it stop!!!!  I cover my ears and humm trying to drown out the sound.  It isn’t working.   Please stop!!!  I zigzag back to the house. Mom is hollering my name and running after me. Why is everyone running toward me.  Oh the big truck, I like how the wheels spin.  I want to touch them.  Why does everyone look so panicked?  I just want to touch the wheels.  The buzzing in my ears is worse.  Where can I hide?  I need to get into the house.    I see a blanket on the couch.  I’ll hide under there.  Zachary comes over and jumps on me.  I shove him off.  I didn’t mean to hurt him.  I just want to be left alone.  Why is he crying.  I can’t stand that sound either!!!  I have to get out of here.  Why is everyone gathering around me?  Why are they all holding me?   Don’t touch it.  I try to kick I try to squirm, I don’t mean to hurt them.  The more I try to get away the. tighter they squeeze.  What is that poking my foot?  Leave me alone!!! 

My one hope for Brayden is happiness.  I want him to feel comfortable, regulated and to be able to go and do whatever he wants.  I just saw a post about my friend who’s son has the therapy dog.  They were actually able to go camping.  The dog helped to relieve the anxiety that the child had.  I don’t know if it is the deep pressure, the consistency, or the fact that the parents weren’t anxious.  But I feel so inspired that maybe one day we can be that family that can go places, feel safe, sleeps, and have Brayden feel comfortable in his own skin.