Hunter is Home!

Hunter was in the Neuropsychiatric Special Care Unit at Children's as an inpatient for a week and a half.  It was so hard leaving him.  He had never been away from home and it broke my heart to think that my sweet little 8-year-old boy had to be in a special care unit.

I've shed a lot of tears and done a lot of praying and have come to a few conclusions.

First, I know without a doubt that God is working in our lives!  As I mentioned a few posts ago the last years we had drifted away from church and were not trusting God to lead us.  During Hunter's stay I have been praying constantly.  Even when I'm doing other things my mind is actively praying, I've never really done that before, it's like I can't shut it off.  I also know our church and many of my friends and family have been praying.  Hunter told me when we were in the car that the prayers worked.  I didn't prompt him or tell him that we had all been praying, he simply said that the prayers worked.  When I asked what he meant he said that on Sunday night he "felt" the prayers work and that God helped him.  He said he felt different.  I know this isn't the end of the road and I'm sure we will have many meltdowns and challenges ahead but I know without a doubt that with God's strength we will get through and find ways to help Hunter.

I also realized that we allowed ourselves to be sidetracked in how we looked at the kids.  During the fight with the schools it was very difficult to get anyone to look at anything but the behaviors.  The NSC unit uses a diagram of an iceberg to demonstrate the problem with this.   We all know that the Titanic was sunk by what appeared to be a small iceberg on the surface of the water.  How could such a small thing sink such a large ship?  Well, it wasn't the surface iceberg that sank the ship, it was the part of the iceberg that was under the surface that sank the ship.  Only the tip of the iceberg shows on the surface.  With kids like Hunter the tip of the iceberg is the behaviors that present outwardly (hitting, kicking, biting etc).  But when you look below the surface there may be a much bigger base to the iceberg that is the root cause of the problem (medical, neurological, sensory, communication etc).  If you only treat the tip of the iceberg you never get to the big part of the iceberg that can actually sink the ship.

It took us over a year of fighting the school just to get them to change his IEP to show as autism and not social, emotional, behavioral.  We repeated over and over that the root cause for his behaviors was autism and if they only treated it as behavioral then they would never fix the problem.  The school system is actually set up in such a way that is difficult for these kids to succeed.  We began treating the problems as behavioral ourselves out of frustration and lack of support.  We didn't intend to, but there didn't seem to be other options.  The schools are overloaded and don't have the resources to work with these kids and they lump them into programs that don't work because that's all they have to offer.  It is hard to fight to get the kids in schools for autism and budget cuts are destroying some of these remarkable children.

My plan right now is to focus on my children and get them doing well.  But I see a problem in our school system and the way these children can be shuffled through the schools and not given the care that they need.  They are being left behind and there need to be programs designed for children on the spectrum.  I will be praying about the direction I need to go and in the meantime focus my attention to make sure my two are out of crisis mode.