A little faith and a diagnosis

There is lots of talk about getting a diagnosis for kids like Rex. Is it really necessary? What will it do for him? How will it help? For us, it wasn’t about getting a diagnosis; it was about getting help for him and for all of us.  As we left for yet another evaluation today, I began to reflect on how far we have traveled and how long the journey has been to get to where he is today.  I have kept much of this sheltered from those who know us, but I realize now that this must be given a voice. With that voice, there might be an answer for someone else and with answers comes hope.

Shortly after Rex turned 4, he had his first appointment with a therapist. His behavior had gotten progressively worrisome from ages 3 to 4, so we sought some help to manage his angry outburst.  6 months later, he saw his first psychiatrist after he had a complete raging hysterical breakdown and repeated over and over that he wished he was dead. It was the first time he threatened to kill me.  He was 4 years old when he was put on his first medication. Things got better for awhile.  The medication controlled the rage and we pushed aside thoughts of any other issues. We went through kindergarten without much struggle. Then the summer of 2012 came and life fell apart. Rex started first grade and things only got worse. We tried two other medications during this time, but nothing was helping. Our psychiatrist at the time refused to consider testing for mental disorders or autism. By this point I had educated myself on the mental illness and autism and I felt sure that Rex fell on the spectrum somewhere.

After 2 years with our first psychiatrist, we switched doctors.  Rex was almost 6 years old. Our new psychiatrist took one look at his file and our war-torn faces and jumped in the trenches with us. New medications were added. Old medications were taken away. Autism testing was at the front of his plan.  We drove 4 hours to the testing facility only to have them say our son was fine. (Another story entirely) They said there was some anxiety and potentially a mood disorder, but they didn’t even listen to me or his psychiatrist. I left in tears.

Through all of this, his behaviors got worse. His sensory issues were out of control. Our lives were in chaos. We asked for a re-evaluation and were told that they had put all re-evaluations on hold indefinitely.  We were on our own. We started occupational therapy for him ourselves, paying out of pocket since without a diagnosis, there would be no coverage. We learned what we could and did what we could to help him. We There was no one to really help us through his day to day struggles, so we had to learn on  our own through trial and error.

Then at 8:30 on a cold night in December, my phone rang. Our insurance had started doing re-evaluations again. And there was an opening for us the next week.  Another 4 hour drive and another full day of testing and we finally had a diagnosis of autism, but more importantly we finally had help. Almost 4 years after my first call for help, someone answered. That little box checked off on his medical chart was all our insurance needed to provide us with services to finally help Rex.

He has since had academic testing done as well as speech and occupational testing. He went in today for another round of evaluations to try and properly narrow down his autism so we can find the best solutions for him.

This journey has tried over and over to rob me of hope and over and over I find new and better doors opening where old and broken doors have closed. We now have a fantastic psychiatrist who has never given up on us. He calls Rex his Little Buddy and truly cares about the entire family. We have a bunch of amazing ABA (Applied Behavior Analysis) tutors who come to our home for 6 hours a day, 3 times a week.  We have a charter school for Rex now that has fully embraced his uniqueness and wants to see him reach his potential, whatever that may be. It has taken us over 4 years to get here. I know that there are doors that will slam shut on us again and I know that there will be those who try to steal our hope as we continue living this life. I also know that new doors will open full of warmth and acceptance. All it takes is a little faith.