Thursday, January 5, 2012

What really Stresses me out

Is this.  Hours of this.  Of all the things we have to handle for Brayden, this may be at the top of my list for stressful things...this is what makes my jaw clinched and knuckles white.  It is the screaming.
It is amazing how long he can scream.

We had a birthday party to attend.  He was screaming at home but I promised Carter and Luke I would try and take Brayden so they would not have to miss the birthday party.  Brayden was screaming and I still loaded him in the car.  While I was loading him, Carter and Luke was getting in to nice fight with each other that included some pushing and punching.  Everyone was crying and we had not even pulled out of the driveway yet.  I should have just unloaded everyone right then and there.  But no, I pulled out and off we go.  First, stop and get gas.
Brayden is still screaming.
Screaming so loud that Luke asks for someone to pray for Brayden.  Carter gladly started praying.
Brayden is still screaming.
Oh wait, he pauses for a moment...but then we hit a bump in the road...he screams.
He pauses for a moment then I sneeze...he screams.
He pauses for a moment then I turn the car...he screams.
Every little thing is setting him off.

He is screaming and I miss a turn to the party not once but twice.  Is there a DUIS, Driving Under the Influence of Screaming?

We finally arrive in front of the house, Brayden closes his eyes to sleep...apparently exhausted from all the screaming?!  Carter and Luke dash out of the car into the house (like they were running for freedom).  I sit in the car with Brayden contemplating what to do...then he starts up again.  I call Jeremy, tell him to get Carter and Luke because I am heading home with Brayden.

We finally make it home...Brayden screaming all the way.  I put him in bed, still screaming and eventually he stopped.

Here is the problem with the screaming.
1.  I have NO idea how to help him stop.
2.  He does NOT stop.  He gets past the point of no return.
3.  Many times, the more I try to console him the more irritated he gets.
4.  I have NO idea if something is is an idea of the checklist in my mind
  • Is he in pain?  Maybe, he certainly screams like this sometimes...once he actually had a kidney stone and another time he had a broken leg (and we did not know)...but he has screamed many more times without some medical thing wrong.
  • Is he uncomfortable?  I am not sure what is uncomfortable for him (other than obvious things).
  • Are his feeding tubes okay?  Yep, always looking good.
  • He is getting sick?  Rarely had a cough or fever...but he never really registers a fever since he does not control his body temperature well.
  • Is he tired?  Then just GO TO SLEEP ALREADY!  Stop fighting it, if he is really tired.
  • Seizures too much?  Not usually, seizures have been under control for several months.
  • Medications bothering him?  This may only be the case when we are changing around his meds, which thankfully does not happen too often.
  • Too noisy, too much stimulation? We were just in the silence, all of us, in fear that any sudden movement or noise would aggravate him.
  • Too much stimulation/activity throughout his day?  Maybe it catches up to him?
Ugh,  I need to find someone that is a Special Needs Whisperer for Nonverbal Kids (like the horse or dog whisperer).


Giving Gal said...

Sending up prayers and specifically for a Special Needs Whisperer!

Anonymous said...

oh no!! i know how awful it is to watch (and listen) to a child scream hours on end, and not be able to help them. i have a little girl (she has a severe TBI)in my class who has done this for three ears. i'm not sure about brayden, but my student will go in cycles. she'll be pretty good (less than 45 minutes of screaming a day) for a few weeks, and then out of nowhere, she's screaming for four of our six school hours.

we've found that playing her fave music (she likes techno - i think it's the heavy bass she likes) into a set of noise-cancelling headphones that's placed on her head calms her. she also loves to spend time in our snoezelean/multisensory room with techno music BLASTING.she loves watching the lights in the room.

i hope you're able to figure out what calms brayden!

Vivianne said...

Oh honey, I can totally see why this stresses you out. I saw my sister go through the same thing. She would bring her child in (whichever one it was at the time), and give them to mum, and go back to her flat out the back. She wouldn't say a word, but she didn't have to. You could see it in her eyes, just how much she'd been through in the last several hours. Mum would take over caring for my niece/nephew then while my sister took a short break. I don't really know what to say except to express some sympathy to what you're going through. Sending a big hug over the sea to you too. And when you find that Special Needs Whisperer, send him my way when you're done :) xx

The VW's said...

That would definitely drive me insane! I feel so frustruated when Gavin is crying or screaming (which is rare, thankfully), but when he does I feel so out of control, because there is little you can do to help since you have no way of communicating what the problem is. I wish there were an easy answer for you! Prayers for answers and peace in this area! Hang in there! Hugs!