Tuesday, January 24, 2012

The Run Around

It's never a good day when Alexander WANTS a nap and can't have one, and Jacob DOESN'T want a nap and needs one. 

Anyway, this morning I finally went to DFCS to hand-deliver the Deeming Waiver papers I've been working on (seemingly) non-stop for 3 weeks. It went smoothly because I got there during a lull and didn't have to wait in line. Although, I'm sure I'll have to go back and turn in things I missed. Like, I haven't gotten the Diagnosis Report in the mail from Marcus Autism Center yet so obviously I wasn't able to give DFCS a copy. At least the main application and most of the other forms are in though. The lady at the desk stamped every page with a nice "Received Jan. 24, 2012" stamp. So now it's official and they're on the clock. Quite a relief to see in person. (I'm also positive that the stamp was made by my former workplace, Classic Impressions. Somehow I found that soothing in and of itself. Not sure why. Probably because I know more about the tool she was using than that lady does...But I digress.)  

Also from my to-do list today: I'm still working on getting Alexander an appointment for a feeding assessment, 4 whole months after his initial referral! The back story of this grand debacle runs thus...

September 13th: During his Developmental Screening (initial intake) at Marcus Autism Center, the physician refers him to the Marcus Pediatric Feeding Disorders Program.

A few days later I receive Feeding Program paperwork in the mail to fill out and return. After only a mild case of procrastination, I do so.

After they process the paperwork, I get a call from the Feeding Program rep. telling me that Alexander will need a Feeding Assessment done before they can make an evaluation appointment and accept him into the Feeding Program. They don't do the assessment at Marcus so the rep. tells me to make an appointment at the Children's Healthcare of Atlanta satellite clinic. 

I immediately call the clinic and ask to schedule the appointment. The receptionist says they can't schedule an assessment without a doctor's order. She explains that there are two types of assessments and they need to know which one to do.

I call Marcus back and ask them to send over an order. The rep. says they don't provide orders, and I will have to call Alexander's Primary Care Physician to get one. 

I call the pediatrician and ask for a doctor's order for a feeding assessment to be faxed to Children's Healthcare of Atlanta. The referral rep. asks me what the order needs to say. I don't really know. I tell her that Marcus Autism Center is the office requesting the assessment so they should know. She says she'd like to help as best she can so she will call Marcus herself and ask for the information. I give her the name and number of the rep. for the Feeding Program and thank her profusely for taking initiative. She says she will call me back when she knows more. 

The pediatrician's referral rep makes several phone calls, both to the Marcus rep (who doesn't know what to tell her) and the CHOA satellite clinic (who never calls her back.) I call her 3 times over the next month (through October) trying to follow up and each time she places another call to CHOA and doesn't get a response. 

November arrives. Then December. The holidays distract me from my growing frustration.

January 6th: Alexander has his consultation with a Neuro-Developmental Pediatrician at Marcus. She diagnoses him with Autism, PDD, FTT, and a Concurrent Feeding Disorder. She tells me she will be referring Alexander to the Marcus Feeding Program and I explain the aforementioned difficulties. She says she will go ahead and give me a second referral anyway and hopefully we can get things moving.

About two weeks later: I receive the same paperwork in the mail as before: to fill out and return. I consider cursing. I work on other pressing issues and put another phone call on my List.
So, today I called the Marcus Feeding Program rep. (yep, same lady) and asked if I actually need to fill out these new papers or if they can just use the ones from September. She didn't seem to remember my situation and I had to explain everything all over again. She said she would have to ask the program director what to do because he would wonder why I didn't go to the satellite clinic months ago. Apparently the director was in a meeting so she told me to follow up with the pediatrician's office again and she'll call me back after she talks to the director. 

In the end I did make progress with the pediatrician's office because I mentioned his diagnosis from the 6th and the referral rep said she would just put down "Concurrent Feeding Disorder" and send it over to CHOA. Hopefully this will at least get CHOA to call the her back and open up communication. 


  1. Oh man, Amy, I'm so sorry you guys have to go through all this. I'm SO frustrated and I'm just reading about it! You just want to get the help your child needs and move forward and you have all these things (and stupid people) getting in your way! I hope it all gets worked out soon! Give those cute boys big hugs from me & Scott, we love you guys!

  2. I'm sorry but I'm laughing my head off at the look on your face! That is classic! Love you so much! Hug my grandboys for me and I'll see you tomorrow!!!!