Friday, April 8, 2016

Gyro-Stim update - Did it work?

That's the question we get over and over.

I just couldn't post

A part of me just didn't want to get my hopes up - I know that sounds odd BUT how many times over the last 4 years have we had some hope for it to be dashed.

In addition, his therapist had warned we were getting close to residential treatment.  I think deep down that thought scared me so much that I felt I was standing on the edge of a cliff and afraid if I breathed wrong we would go over.

BUT we have been long enough out of treatment, and past the mark where any brain rewiring would occur that I believe I can start to hope.

Even my very stoic husband looked at me one day and said "what happened to him."  Everything from Cav's voice to his facial appearance has changed.  Friends have noticed it, his teachers have noticed it, and most importantly the kids have.

In school he had no friends (not for a lack of trying on their part - they wanted to love him but he would be mean or hurt them.)  He had to sit by himself at lunch and in the classroom (again not a lack of trying on everyone's part).  And at home he never was able to play with the kids longer than 20 minutes before he was raging or someone was bleeding.  He couldn't be around our littles anymore without strict supervision because of harm he caused them.  Really, we were at a point where I was wondering if he had been better off in the orphanage - and that statement goes against ever fiber of my being.

In one word we were DESPERATE!

I have to admit that I am also MAD - how have I never heard about the vestibular system, why after all those therapies did no one treat that area?

ANYHOW - here is what our life looks like now.

We made the mistake of doing the process over Valentine's Day and a day off of school.  This was a disruption in our routine and lost some hope because he went back to his typical of stealing, raging etc.  In hindsight he always has had a hard time with holidays.

We ended the treatments in February (it was 7 treatments over 3 weeks.)

The beginning of March is when my husband made the comment - and try it was like having a new boy.  I even caught myself thinking - I actually like this kid.  He is funny and charming.

I went back and forth on what to do for our spring break - as we had the opportunity to attend a disability ski weekend.  Truly in the last 4 years Cav has not done much - he screams or rages every time we go out in public so we have found it better for him and our sanity to leave him home with a sitter.  BUT it broke my heart each time the trauma wore off of his latest action.  (and before you comment let me give you a visual - My very large husband having to carry a screaming chinese kid through IKEA where there is no quick exit, all the while he is flinging his titanium legs at anything he can get close too.  I am trying to calm the other kids and get them out. - NOT a fun Sunday afternoon for anyone.)

So we signed him up along with 3 of the other kids.  He had been acting so good.  And considering the circumstances he actually did pretty well on the trip.  We had some regression and hiccups.  BUT when we left to come home together I saw a change in him, a peace almost.  It's hard to explain but thinking back I am wondering if the hiccups were due to him being worried that he was going away for treatment.

Then we arrived home from Skiing and headed right into Easter - I do NOT know what it has been about Easter that has set this kid off - BUT he has never been able to make it to the family egg hunt.  He would be in his room raging by noon EVERY YEAR!  But this year he did it!!  It got to hunt for egg, and enjoy the whole day with the family!!

It has been 2 weeks since then and we still see a new kid.  It has been odd though - it's like he missed the last 4 years and is just now waking up from a fog.  Things he will ask are like a preschooler.  Socially, the mistakes he is making (primarily at school) again like a preschooler.  The lucky thing is he is grasping the rules and the why's and quickly accommodating his behavior to that.

Another blessing is the kids in his class are holding him accountable - God really has answered that prayer and the walls and boundaries are clear as day to him.

As for home life - he is not hoarding food for the most part.  He is finally grasping the fact that the fruit tower on the table is available anytime, as is the rice that is always in the cooker.  The greatest change is his awareness that there are others around him.  I almost sat int he driveway and cried when I saw him take Remy's hand, and gently guide him into the house.  In the past he would walk in front of others, knocking them over or even pushing them.

We still have a long way to go - but we are finding a boy we never knew existed.  One that wants to help, to be around the family.  A hard worker that also wants to go out and play with his brothers.  The best part is - he has had some consequences over the last 2 weeks for making poor choices.  He has been able to handle those and move on versus the downward spiral that would last weeks and months.

Although I didn't want to admit it - Gyro-stim changed our life for the better!!

1 comment :

  1. Wow! I've been waiting to read how this worked for your son. Amazing and wonderful for all of you! What an absolute miracle you learned of the treatment and that it's done so much to "awaken" the best in your son. I celebrate with you for the changes for Cav and your family!
    Nancy in the Midwest