Thursday, January 24, 2013

Detours and dead ends

I haven't written in awhile. I was waiting until I could write a really uplifting, positive post about Jacob's progress since our new diagnosis. The specialists at UF told us that he has a mixed receptive and expressive learning disorder, not autism. In short, this means that he communicates and processes things like a 4 year old instead of a 5 year old.

Here is the quickest recap of the past several months that I can manage:

  • September 20th: Diagnosis from UF & begin process of trying to get a speech/language therapy evaluation at Wolfson's so that Jacob can start therapy.
  • October 17th: Meet at Jacob's school to have his IEP revised to include language therapy. (Free, convenient, and included the possibility of being seen more than once a week.) It is a process to collect data and evaluate if his problem is a need that could be met with extra help in class or warants therapy, so we were told that it would take a few months. I didn't want to wait, so after giving my written consent to start the process with the school, I still pursued the private route.
  • Found out that the school didn't place him in an inclusion class like we were told that they would. His teacher is actually referred to as a "ghost teacher". But changing classrooms at this point would be a nightmare so we just all try to make it work.
  • November 1st: Started dealing with major anxiety issues and inappropriate behaviors on a daily basis. In one night, I went from having a child that was happy to sleep on his own to having a kid that absolutely wouldn't sleep without me. 
  • Called the UF "specialists" and were told to get him therapy 30 miles from our house, weekly. Therapy. For a child that cannot express himself or answer even the simplest "Why?" question. NO.
  • November 14th: Met with the pediatrician to figure out what to do, including the possibility of medication. He advised us to wait it out on the meds, start the language therapy before even considering therapy (which he agreed would be a waste), and use some behavioral management techniques to improve the behaviors.
  • Thanksgiving break: After we returned back to our normal schedule after the break, it was as if something had clicked inside of Jacob. He was calmer, happier, and gradually started sleeping on his own. His behavior was just much better and I wasn't the only one who noticed. 
  • November 26th: FINALLY get an appointment at Wolfsons. He gets accepted for therapy, and I was told that we might want to consider Sensory Processing therapy as well. He has always had sensory issues, but they keep getting brushed aside in each diagnosis because they seem to be getting better with time. I decided to start Speech first, and hopefully after he was in speech at school, we could start the sensory stuff at Wolfsons.
  • December: I wrote a note to Jacob's school when his progress report came home to check on the status of the data collection, etc... for therapy at school. I was told that they just had to finish up the process and get him on the MRT schedule. (They hold 2 of these meetings a month.)
  • We manage to get in for 4 therapy sessions at Wolfsons by December 31st before our insurance changed. 
  • January 2: start trying to get Jacob's therapy approved under our new insurance plan. End up having to miss 2 weeks of therapy waiting.
  • January 12: Get a call from the guidance counselor letting me know that Jacob's paperwork had never been filed or something and the data collection process that takes MONTHS was NEVER STARTED. "Sorry, could we get you to sign a new consent form?" At least they had me date it "October 17", so that he could become a priority instead of being put at the bottom of the list. 
  • Ever since Christmas vacation ended, Jacob has been off the wall, unfocused at a new level, and exhibiting weird tendencies that (the therapist confirmed) are related to sensory processing issues. I ask her to start the evaluation process for sensory therapy. 
  • January 21: Decide to take the risk of therapy not being approved and still take him to his session. ($130 instead of a $30 copay for 30 minutes. I find out that he has been removed from the therapy schedule because of the insurance problems. All of our convenient 5 pm appointments were gone. For the next 9 weeks, we had to find random and totally inconvenient appointment times.
Today, January 23rd: Officially denied coverage for therapy from the insurance company. (Getting this information took 3 times longer than I was originally told it would take.) The bright spot is that we will probably be approved for a scholarship program where we only have to pay a copay (similar to insurance). I just need to fill out a single form and get the insurance company to fax me an official denial letter. "Sure, no problem. We'll have it faxed to you and the doctor today," said the seemingly helpful customer service representative. 5 pm= No fax. If I don't get my application in asap (like, tomorrow) I will lose all of the random appointments and be put on a waiting list. 

I also called the guidance counselor shall I put it mildly?... lit a fire under her "la-dee-da, the system is just slow and you can't fight it" butt to get his language therapy eligibility evaluated. NOW. 

If you actually took the time to read that, is your head spinning? Mine is. 

Like I said, I've been waiting to write an encouraging post about how well Jacob is doing and how much progress he has made with all of the therapies and interventions that I've been ensuring that he has. 

Still waiting...

Discouraged doesn't even scratch the surface of describing how I feel about how people and institutions are failing in every possible way to help me help my son. That is all I want. At the risk of sounding bitter, I've accepted that this is our road but I hate it. Someone call my travel agent because I want to select a new destination. I want to be on the road that gets us invited over for play dates with other Kindergarteners; where we could even think about looking into music lessons for the kid who already has a passion for it or joining Cub Scouts or soccer; the path that allows me to have a full conversation with my son without it ending in total frustration for one or both of us.

I know in the depths of my heart that it could be SO much worse and I am truly grateful that it isn't. But I can't help but look at Emily sometimes and think, "But it could be so much better." 

Guess how long I get to attend that pity party? About 10 seconds. Then I am invited right back to my life of trying to make the best of it and doing everything I can to pave the road ahead for Jacob. The past 5 months have been full of detours, dead ends, pot holes, and any other metaphor you can think of. The rest of the foreseeable journey actually looks worse than I ever thought we'd be on.

Please God, fill up my tank.