Friday, September 23, 2011

It's been a while

At the request of friends going through similar hardships with their kids, I'm blogging again.  Jake was pretty much the same at school for the rest of the 2010/2011 school year.  He was constantly overstimulated and agitated at school.  What it looked like was talking out of turn, messing with things in his desk, ignoring instructions, and disobeying.  He wasn't the worst kid in the class, (which is a huge improvement) but never at HIS best. 
But things got better, much better!

After school ended I knew things had to change for us.  Jake wasn't making improvements and I wasn't satisfied with the huge plateau we were all on.  We are so blessed to have a therapy school run by an Awesome mom and long term respite provider as well as a Special Ed director who are both extremely experienced in RAD behavior therapy.  This is the school we initially took Jake to to help us as we started therapy.  But this year they started a version of school to help those kids who were attached to their parents, but were badly in need of social skills and coping skills for public school.  

Our kids are very interesting because they have a diminished capacity to control their emotions and regulate themselves.  Like with Jake, he gets excited about a field trip (like this week he isn't doing well because of an amazing field trip coming up in a week) and he can't come down from that excitement which looks like him being constantly hyper, making bad choices, very edgy, and very disobedient.  It's totally fun for a mom!  So this version of school was perfect for Jake.  There were 3 kids per teacher, (usually moms of the kids) they were expected to do school work appropriate for their own grade level, ultimate respect was essential, and activities and social interactions were encouraged under the supervision of mothers trained in RAD therapy.  We always had a spiritual lesson where children were taught lessons from the scriptures about themselves and their relationship with their Heavenly Father.  All of this was provided without the opportunity for kids to hoodwink their authority figures and manipulate the other children in the class.

So we did this school for a few months.  I was tired of missing out on doing fun things with my other kids because Jake couldn't handle anything.  I needed a break from his mental illness.  I needed to play and now worry about how I was going to pay for it later.  And it worked!! I was so happy to spend time with my 3 little kids.  They deserved a break as well.  We would go to the park, and swimming, and all sorts of fun places that Jake would normally destroy for us with his erratic behaviors.  It was so nice to be with children who didn't go overboard with their emotions.  The others were able to be excited and still listen to me and follow directions and be safe.  

The other great news is that Jake's therapy is working!!  We stopped his school in August.  Jake was so wonderful!  He was happy and fun to be around.  He was obedient and what I have always pictured him to be.  He was able to get stimulation and recover.  He had feelings and was able to work them out.  I was so pleased, but still worried about school coming up. 

I had met with the school officials, past, present, and future teachers. I had amazing support from Jake's teachers as they have known Jake before and after therapy and trust that what we have done works for Jake.  Long story short, Jake's first month at school was amazing!  He was given the strictest teacher the 4th grade, and was set up with the boundaries that he needs, like reading for recess, and a hyper vigilant teacher watching for his "tells" and helping him recognize when he is "off".  What works for us is that Jake's teachers email me every day about his behaviors and overall mood.  It's been a lifesaver.

I really could go on forever about every detail, but the story is that the hard work we did is working.  Clearing his room to create a super low stimulating area for Jake to decompress, keeping Jake close and away from over stimulating situations, being incredibly strict, and keeping Jake responsible for his actions and his own recovery HAS WORKED.

We have loved that Jake has chosen to use all the tools we gave him.  He has his ups and downs but overall his coping skills are getting better.  My coping skills are infinitely better.  I am a happier person because I finally know what to do with him.  I finally know what works.

Here is an example: Jake is so worried about this field trip coming up, as he should be.  They leave for a national park at 6am and come back at 4.  He will be gone in a new environment without his usual schedule for the day.  So because he is so excited, he tends to go to his "fight or flight" brain.  This part of his brain is incapable of reasoning.  Once he goes there it is incredibly hard to return to the "thinking brain" that helps with regulating and calming.  He now is susceptible to "false thoughts" that come in like, "I won't be able to handle this" and "I'm going to freak out and embarrass myself" and "I probably won't be able to go just because I want to so bad" then it goes to, "I NEVER get to do anything fun" and "My mom is so mean to me" and "I'm so mad at her" and "If she won't let me go, then I'm not going to do the dishes right" and "I'm just the worst person because I can't go"  and finally "I don't deserve it anyways because I'm such a bad person"

All of these thoughts are FALSE, but he can't see it sometimes.

This little kid has a brain disorder.  He has a really hard time filtering out and reasoning through the thoughts that come to him.  Most of us can dismiss our false thoughts and use logic, reason, and evidence to know what is true.  Jake used to not be able to do it at all.  But through our therapy we have been able to practice this and get better every time. 

So when he showed me the behaviors consistent with him losing it, I knew he needed a low stimulating situation.  I gave him his scriptures and some other books in his room and let him get it out in there for the day.  He still hasn't worked it all out, but he has a choice.  I may or may not let him go depending on his state of mind.  Going into a stimulating situation while he isn't regulated is like giving a diabetic child a full meal of sugar.  It is dangerous.  It can send him over the edge, it's not good for him.  He may look "just fine" to the untrained eye, but he is literally going crazy inside.  

These are the decisions I have to make for Jake.  I have to do what is best for him even if it would be so much fun, or good family time, or a great experience.  Because often activities are NOT good for him because he is NOT normal.  And the sooner the people around him realize it, the faster he can heal.  I am not saying that we will never do fun things with him, we have.  I am saying there is a time and a place for that.  I will always do what is best for him, not what is socially acceptable to others.  I have gone far past caring what others think about what I do for my son.  I pray about it all the time, I keep close to those who "know" and I have grown the courage to do the right thing.  

This is not just Jake's story it's mine.  I'll leave that to another blog entry ;)

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