My boat is sinking

If I would have started this post a few hours ago, I have to admit, it wouldn't have been a family show! I am so frustrated by the lack of support we are receiving. Last Friday I called the appointment hotline to schedule three "well child" appointments for the kids. I also explained to the lady at the appointment line that I also needed, for Emmie, to ask the doctor questions about a referral for speech therapy and get a medication refill. "No problem, we have your children booked for July 29th from 3:00-3:45 pm". "GREAT!", I said! After all, carting three kids back and forth to the doctor is a hassle it was great to have them back to back. On Tuesday, I received a message from the Pediatric Clinic. They wanted to cancel my son's appointment because he had a "well child" appointment in Jan. Actually, he did have an appointment but it wasn't a well child check up..the boy was sick. And they also wanted to cancel Emmie's appointment because she had a well child appointment in December. Umm, again, no. She did have an appointment in December, however it was yet again to clear up the hearing screening mess that they started. Knowing I wouldn't be awake at 7:30 am to return their call when the clinic opened (hey, it's summertime after all), Doug agreed to stay at the office late and call them for me from Germany. He called them and called me around 8:30 am. He said he canceled Jensen's appointment (I'll deal with that later, thank God he's a healthy kid!) and they were going to work Emmie's as a 30 minute appointment since the time slot was already booked for the family. Apparently during well child appointments, they refuse to do medication refills or anything that requires them to actually do their job. It's a 15 minute, shuffle you in and out, appointment. Fine, they worked with us...I'm okay with having to reschedule Jensen. I get to the Pediatric Clinic, with Emmie's binder of information in tow, only to have the receptionist, who we will call Little Miss Sassy pants with the major attitude, tell me that is NOT what she told my husband. She told him she would have to speak with the doctor and as of 2:40 when we arrived she had yet to get off her fat butt and speak to the doctor. She was obviously making it up as she was going along. Call it years of living with a Mental Health Tech, but I can read people. Me and her exchanged some words, obviously my husband isn't a liar, the poor guy works at the hospital and knows a thing or two about booking appointments and why in the word hasn't she already spoken to the doctor? So, she asks me what I needed to see the doctor for. I explained to her I needed to get a medication refill, told her the medication, and she hoped on the computer and said she could take care of it for me right now. Awesome! So, I then went to tell her about the referral I was going to ask about. Emmie is receiving speech therapy at school, but I would love to have supplemental therapy at a private therapist in the hopes of working with the Fast Forward or Lindamood Bell programs. I explain that Emmie was diagnosed with Central auditory processing disorder and I would like to see about getting a referral for speech therapy. She jotted down the word "Audiology" on her note pad. and said, "So, she needs to see Audiology." "NO, she doesn't need to see Audiology. She has had several pure tone hearing screenings and when you process that referral Tri Care is going to order another one." Again, she repeats herself. Frankly, I wanted to jump across the desk and pop her in the mouth. For those who know me, you know I can get a little...redneck...especially when it comes to the kids. I reached across the desk, grabbed a pen and marked Audiology off her her list. She wasn't getting it, like most so far. I repeated myself again about the speech therapy and finally she wrote "speech" on her notepad. Anyway...height and weight for Carrington were taken and off to the doctor we went. I have seen this doctor before and really liked her, but today, sporting a new name and dress that really should have been a little bit longer, she came in the room. She saw Carrington and her appointment went well. Next we come to Emmie. Very pleasantly the doctor asks what sort of referral we are requesting and I explain the whole situation. I am not sure what the point of having medical records are as the doctor never seems to review them. Mind you, this is the same doctor who finally got the referral for CAPD assessment correct. I explain to her the nuts and bolts of Emmie, quickly as I could tell she was done with us and it was barely 3:15, and why I want additional speech therapy. Her response is "don't they do that at school?" "Yes! She does receive Title I instruction, Speech Therapy, and Resource. However, I am seeing minimal improvements in her auditory memory and cohesion. I would also like to explore more options to increase her phonemic awareness...." and on and on. I seemed to lose her after I said Yes! I went on to tell her about the last referrals and how the words have to be chosen carefully or more hearing screening referrals would arrive in my mailbox. She agreed to put in the referral but only if I understood Tri Care only covers speech therapy for children under the age of 3. Seriously? I don't care if I have to work at 7-11 as the Slurpee machine cleaner, I am going to do what I have to do to ensure my child will succeed. "Fine. I don't know why you need a referral, but I'll put one in". Never once did she ask where the diagnosis came from, how long we have known of her struggles, major concerns, her school performance, to see her hearing screenings, or any other "important" questions. Nor did she say one word to Emmie or try to watch her as she ate her cookie and flip through the "If you give a mouse a cookie" book. Never a "so, Emmie, how old are you?" or a "What book are you reading". NOTHING! Emmie didn't speak during our time in the doctor's office. And I do use simple sign language with her and during this visit I used two signs. Why sign language? Emmie is a verbal child (oh man, is she!) but the extra visual symbol allows her to put the picture with the word and improves her visual spatial memory. Anyway, she was eating an animal cookie and I made the sign for "finished?" because I could tell she was looking around the room for a trash can. She nodded and handed me the bag. I also made the sign for "listen", as I wanted to her pay attention to the doctor in case the doctor spoke to her when it was her turn. Emmie knows if she sees the sign for listen to stop what she is doing and look directly at the speaker (we also use a verbal command, but in some situations a sign is more appropriate). To be honest, this doctor has no idea if my child is a verbal or non verbal child. I don't feel like she treated Emmie as a person or even patient and more like just something she had to be bothered with. We left the clinic at exactly 3:34. We still had another 11 minutes of appointment time. So what was the big deal in the first place? We didn't take another person's slot?

I left the clinic and went to the pharmacy. Little Miss Sassy pants did not put her allergy medication into the system. I was so frustrated by that point, I said forget it. I'll buy it over the counter (Thank God Zyrtec can be purchased over the counter for children). Then, straight down the hall, around the corner to the Tri Care office. I sat down and explained the situation again and a few clicks on the keyboard and the representative told me she wasn't sure where the doctor received her information but speech therapy is indeed covered. No, age 3 limit. She even jotted down on a pink note card where I could find the information and print it out, just in case. Bless her. She could tell I was not having a good day.

So, here I am. Again in the same boat I was before. Most days, it feels like I am the only one fighting this battle for Emmie. I know Doug tries, but he's too far away and gone too often to be as involved as he wants to be. Again I am here paddling and praying that we stay afloat. And has anyone opened the phone book or surfed yellowpages.com and tried to find a speech therapist in this area? The search is coming up pretty dry and I still can't figure out how our EFMP reassignment landed us back at Travis where our child still isn't getting what she needs. I hope I can hold this boat by myself....where did I put those life jackets?

Donna