Sunday, March 9, 2014

Ben-JAMMIN' (Update)

This little guy is pretty cool.

Sitting in the 3D Lego Movie yesterday. He fell asleep after 30 minutes. 
We are very thankful for free movies.

From living in a shed in one hundred degree weather in a mental institution, to learning to love.

Anyone who says it's easy, well...they may be taking a little something they shouldn't.  It is rough, down and dirty, in the trenches stuff.

People forget it's "in the trenches" for him too.

Ben is really growing and learning.  Even learning to put his pants and jacket on himself is an accomplishment we celebrate.  Then there is the signing....which he's learning really quickly.


He seems to pick up a new word every few weeks.  We occasionally see him actually trying to say a word. 

Side note: Next we hit potty training.  Deep breath (maybe that's not a good idea during potty training)....

We are seeing a Speech Therapist, but right now are limiting it to once a month.  His growth is in his own time frame and he can get overwhelmed with too much at once at this point.  We anticipate bumping that up to every other week later this year.  Our speech therapist really thinks there is hope for Ben to gain more audible words.  He tries saying words randomly, but the real trick is to get him to want to say them.  He has communicated for so long without words, that his "comfortable place" is his nonverbal place.

Don't worry about the seat belt.  He is Houdini and
twists it up every time.

We will also be doing every other week Occupational Therapy.  We work with him with many things an OT would, but could use more guidance.

Though not having to "circle the wagons" anymore, we do find ourselves really needing to pick and choose what we will do.  He can, out of the blue, hit a "trigger" or start getting overwhelmed (usually more when he's tired). 

Triggers are like mini landmines.  They are actual triggers of memories from the first nine (almost ten) years of his life.  They can bring on manic laughter, stimming, mini aggression (a shove, hit on the arm, light scratch).  It all comes from a fear/trauma center.

The hardest, very truthfully, is the fact that our little guy doesn't understand proper emotion.  He can be "in trouble" and smile at you at the same time.   Throw in manic laughter and we need to read the script in our head reminding ourselves where it comes from...a place of trauma.  Picture your most frustrating time and the person it is directed at is just laughing at you.  Script, script, script....

It IS getting better. 

Ben is learning I am for comfort.  The other day he got MAD MAD MAD at me because I wouldn't give him what he wanted.  This really isn't normal for him.  He threw himself on the ground, folded his arms, and started bawling.  Tears were everywhere.   For the first time, he cried and Mommy did not go pick him up and hold him like a baby.  He continue to cry (very ticked) and all of a sudden stopped, picked himself up, and came across the room to me.  He then positioned my arms around him...holding him like a baby and started crying again.  My Mommy's heart just about burst out of my chest.  Our precious son....he's learning....Mommy is for comfort.

It's so easy, as a family, to forget.  You get caught up in every day life and just "traditionally parent".   We can't do that though.  It would be like trying to make a fish climb a tree.  He has no concept of "every day life" unless we take him back to the beginning.  Yet we can't.  We can't erase nine years of neglect and abuse.  So we have to parent him through it.  It's a maze within a puzzle.

It's like this.  He does something that the last eight months has taught him not to do.  We put him on time in/time out right by us.  It really doesn't do anything for him because he was used to doing nothing.  Yet if he doesn't have any result he will never understand actions and consequences.  You can try taking something away, but very little holds attachment for him.  IF he wants it, he may start misbehaving and negative attention seeking.  Can we give him the item for negative attention seeking? time in/time out? Hmmmm.....that doesn't really work.

He likes his scarf and finds it calming, but if we give it to him he ceases to learn.  He turns in.  If we don't give it to him, at times his insides can go crazy (enter manic laughter), but he's not so focused inward.  We now give it to him only in the car.  Finding a precious balance for our young son takes a lot of praying, talking, and trial and error.

We were told by a professional to "praise, praise, praise" and Ben likes praise, but that holds zero motivation for him.  He likes both positive and negative attention because negative attention is what he lived many years with and is what he is used to.  It's comfort for him.  So we "praise, praise, praise" and know he needs to hear it, but that it does not motivate him as it does children from healthy backgrounds.

A maze in a puzzle....

Our Ben...

Things are progressing and, in the big picture, going well.  Going gluten free has physically helped him a TON (thus potty training in his future).  Ben can also follow more instruction, is seeking us, and LOVES his brothers and sisters.  He's our 24/7 child with a need for direction (since he never learned to direct his own play), but we occasionally see him initiate play for five minutes or so (WAY up from about sixty seconds).  He is learning and growing.  We celebrate...

He gives hugs.  He holds hands.  He's a Houdini in his car seat.  He mimics his daddy's belly laugh and it is hilarious.  He loves to dance more than just about ANYTHING!

He's our Ben.

Thank you for your prayers in bringing him home and thank you for the continued prayers for growth and healing.  He has a long way to go and we are honored to help him get there.

Hugs and thanks....

Prayer Requests:
*Please continue to pray for the "U".  Some of Russia's troops are entrenched there, though there is denial. 
*Please continue to pray for our friend's daughter Alyssa, who has been diagnosed and being treated for cancer.
*This week is going to be harder as the anniversary of Jonathan's life and death is this week.  Please pray for our family as we navigate something that is beautiful and painful at the same time.


  1. Thank you for that beautiful update and reminder to keep praying for you all!

  2. Could you use his attachment to his scarf to set up motivations? For example, playing turn-taking games with the scarf, and then he has to "perform" to get the scarf for a minute? Also, since he likes music, could you use that as a reward?


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