Wednesday, November 19, 2014


1 comment
I'm not a complainer.  I see things that arise in our life as challenges to be solved.  I have a list I check each time we have to look at what to work on, an IEP, a behavior etc.  That list helps me to prioritize, solve the challenges in a way that works best for Ayden and for us.  So for me, every second spent complaining is one less second spent solving a challenge.  And the more time spend solving is less time enjoying life.

I have been struggling the past few months, though.  A  lot.  We are going through so many changes with Ayden that I don't seem to have handle on and keep losing footing.  It started this past summer.  We gradually began noticing changes.  Reverting to old behaviors such as more spinning toys, laying on the floor humming.   Perseveration of speech and even some toys.  Fixation on ideas.  He began asking for toys that he stimmed on when he was younger that he hadn't even seen in years.   Issac started school around the same time, so we were hoping it was just that.  When Ayden started back to school in September it was okay for him at school, but arriving home was...trying.   Almost each night was ending in tears or yelling (by one or both of us).  School was only seeing minor problems, so we just weren't sure what was happening.  We reached out to our doctor and started to try to tweak medications.  We had hoped his growth spurt that occurred directly before we starting noticing these issues was a cause.  The med changes only made it worse.  So we kept tweaking.  We added some sensory breaks.  We put more classroom supports in place. We discussed changing meds.  Then we noticed changes at home for the better so we decided to stick with the current tweak we had made.  Except within a week school was seeing the negative we had been seeing at home.  Hitting, pushing, refusing work, throwing his shoes, obsessive behaviors, loud, disruptive humming in class and OH THE CHEWING.  In the course of a month Ayden went from 85-90% inclusion to me receiving a call saying we had to fix it or we had to explore a different placement for Ayden.   We are talking about a kid who has been at least 50% inclusion in general education since kindergarten.  A kid who thrives on peer interaction.  Removing him completely is and [thankfully] our team is on board with this.

So, we backed off the tweak we thought had worked and went back to what we knew worked at school knowing that it may make home bad again.  Gradually the school days began to look up and then we had an amazing day for him.  I breathed a small sigh of relief.  The negative behaviors we had seen at home that trigger the changes did not come back to the same extent.  It was manageable.  School was getting better.  We would wait out the medication changes to completely take affect and then explore any changes over Christmas break.  Then came Monday - another bad day at school.  Then Tuesday - he hit his friend.   And me, I just felt done.  For the first time I can remember I wanted to throw my arms up and yell "I QUIT!".

I don't know how to fix this for him.  He isn't happy at school anymore.  With his limited vocabulary he can't tell me how to help him.  He can; however, tell me "I had a bad day", "I try harder", "I do better", and "I'm sorry, Mommy."   I'm so thankful I get that, so thankful for each and every word from his mouth.  There was a time when I didn't know if I would ever hear his sweet voice and it is not a memory I will forget.  My heart is breaking though.  We are working, we are not without a plan.  It is many faceted because we don't know the cause for certain (thus it is not typed out here).  I have no doubts we will make this better for him - the only question is how long it will take.  But it is the time leading up to the solution that is the most difficult.  The time where doubt and insecurities creep in and I struggle to keep myself focused and remind myself that the solution is not always easy.  Where I struggle to shrug off the worries and just enjoy life as it comes in spite of the challenges we face.  Where I have to fight not retreat into myself to cope.

I wish I had a nice, happy ending to this post - but for now I do not.  For those of you facing similar struggles on your journey know that you are not alone.  Remember there is always someone out there who will lend an ear - take advantage of it!