Tuesday, August 23, 2011

Sometimes We ALL Need to Scream


"I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream."
Temple Grandin 

This sums up my Bethanie.  Bethanie is Julio's youngest daughter and my "born in my heart" daughter. On Friday, after over six months of waiting for appointments, a day of intensive testing for Bethanie and another week of waiting for results we heard the words we knew were coming but needed to hear from a Dr, "Bethanie has autism".  I can tell you Julio and I both went through a range of emotions that day, (truth be told we still are), we were relieved, sad, worried, overwhelmed, anxious, and ready to get to work.

Julio and I have known for quite a while that something was wrong. We did what we always do, we read, studied, discussed, asked questions and finally came to the conclusion, on our own, that Bethanie had autism. At first we suspected Asperger's Syndrome, but her difficulties with speech lead us to the conclusion it was more involved and most likely autism.  She does not have problems with pronunciation, her speech issues are with getting her brain and mouth to connect.  She knows, as Dr. Grandin, says above, what she wants to say, but just can't get the words out.  She has meltdowns.  She "spirals" as Julio and I call it.  You can see the frustration mounting, and luckily, we now know to be on the lookout for this and tend to stop it before it gets to out of control.  She has difficulty transitioning.  We knew all these things, and more, would add up to autism, we just needed an official diagnosis.  

Bethanie's pediatrician, Dr. Philip McGaha, has been wonderful and so supportive during this journey.  He has helped us with medications, appointments, and regularly exchanges emails and personal phone calls with us.  We could not ask for more.  He referred us to the Medical University of South Carolina's Developmental Pediatrics Department. We were excited.  Until they called us (this was in about February) with our appointment in...NOVEMBER! We have since found out it would have taken us at least two more months to get the results and diagnosis! Insane.  Dr. McGaha's office got to work and we were able to secure an appointment with a woman that helped start the program at MUSC but is now in private practice.  It was for August, at this point we were happy it was at least 3 months sooner.  Bethanie was tested and we met with her the following week, this past Friday, were she confirmed our beliefs and suspicions.

Now the fun part.  Julio works for Roper Hospital.  Roper funds their own insurance, therefore they do not fall under Ryan's Law in South Carolina which mandates insurance companies cover autism therapies, Dr's appointments, etc.  They fall under federal law and apparently their is no mandate for them to cover autism.  Julio called to appeal this decision and was told because there are federal and state assistance programs for children with autism they do not and will not cover it. Nothing. Not her psychiatrist appointments, not her therapies, not her medications, not her testing appointment which finally diagnosed her (which was around $700), nothing.  It's like they just decided "poof, it doesn't exist".  How very infuriating and frustrating.  Just what we need as we navigate all the things we need to do to help her we also have to figure out how to pay for all she needs!  Families going through all this should NOT have to deal with insurance red tape.  It is inhumane.  It is simply wrong.

Bethanie is high functioning.  She was diagnosed with mild to moderate autism, however, the Doctor was very impressed with some of her skills.  She said Bethanie would make an excellent architect one day or graphic designer, as she LOVES patterns and sees them everywhere!  However, to get Bethanie to that point we need to give her every bit of help we can find. Things that encourage her, increase her self esteem, help her learn to cope with her struggles.  Julio's insurance company just wants no part of it.  We are raising six kids.   It isn't easy financially and this just makes it down right frightening.  We will figure it all out and Bethanie will get every bit of help we can find, but we shouldn't have to be fighting insurance companies at the same time.  I feel a bit like Dr. Grandin, I know what I want to say (to that insurance company) but can't and therefore I think I will just go scream for awhile.

1 comment:

Sherry said...

As you probably know, Ryan's Law is named for my nephew, Ryan Unumb, who is severely autistic. His mom, my sister Lorri, worked and worked and worked to get that passed in SC, although it did not help with coverage for Ryan because of the employment situation (as with Julio.) Still, she wanted to make a difference for others who needed such coverage. Last week she testified in California on behalf of similar legislation. I think they now have gotten this passed in about 23 states; not real sure about the number. The Autism Academy of SC opened for the first time about two weeks ago. By the way, The Duppster has a nephew with autism also; he's in his early 20s. A family touched by autism has quite a journey through life. You ought to check out my post today; it's not really mine. It's Lorri's account of their Labor Day "celebration" with Ryan. Take care.