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. 

Tuesday, January 17, 2012

Christmas Morning Videos

Fair Warning: These videos will be moderately/extremely boring for possibly everyone except the parents and grandparents of Alexander and Jacob. However, my mom (being, obviously, one of the aforementioned grandparents) has been dying to see them.

 Nesting Dolls

Friday, January 13, 2012

Troll Doll, Incorporated

I must say that after 10 or 11 years without washing his hair,
that troll was probably due for a bath anyway.

Tuesday, January 10, 2012

Alexander's Diagnosis Part 2

If you clicked the first link I shared at the end of my post yesterday you've already seen this little Q&A.

What are the symptoms of autism?
The main signs and symptoms of autism involve problems in the following areas:
  • Communication - both verbal (spoken) and non-verbal (unspoken, such as pointing, eye contact, and smiling)
  • Social - such as sharing emotions, understanding how others think and feel, and holding a conversation
  • Routines or repetitive behaviors (also called stereotyped behaviors) - such as repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways

If you're interested in info specifically about Alexander, read on.

For the appointment on Friday I had already filled out several questionnaires about Alexander's habits and abilities and they had me fill out one more up to date one while we were there. Then the doctor brought us in and observed Alexander playing while she asked me more questions (mostly repeats of things I'd already answered).

After a little while, she leaned forward and said something to effect of "So here's what we're looking at, the diagnosis is Autism Spectrum Disorder and here's why" and went straight into a detailed explanation of her diagnosis and the symptoms she saw to confirm it. I'm sure I'm not going to remember everything she said while writing this but I wanted to share at least some of it and have it typed up for future reference as well.

So here are the things she pointed out about our boy under the categories of symptoms from above:

Communication -
Non-verbal (obviously)
Lacking in meaningful gestures (doesn't sign much or even point)
Some eye contact but not consistent

Social -
Doesn't engage other children
Doesn't respond to name when called (I can't remember if this was this category or the first one)
There were one or two other small things in this category but I can't remember what they were...

Routines or repetitive behaviors -
Becoming fixated on objects (examining toys for "too long")
Gets down on eye level to play with toys (lays on the floor next to cars and trains)
Some spinning

I really appreciated her straight forward approach because I hate it when I have to ask a doctor to explain something or repeat something and they look at me like I'm an idiot. This doctor never once acted like I should know something I didn't (unlike when Alexander's pediatrician diagnosed him as "Failure to Thrive" and never once said those words to me but acted like I was stupid when I was surprised when she mentioned it off hand during another visit.) The Marcus Center doctor also seemed to recognize that I am the supreme authority on my son and never once acted like something I wanted to mention was irrelevant or trivial. In a way, it felt more like a "Meeting" instead of an "Appointment." Which really means that it just felt the way a doctor's appointment should feel. I told my mom that I liked the doctor's "floor-side manner" because I spent about half of the visit sitting on the floor handing Alexander Cheerios as he went by and she didn't even bat an eye.

Alexander is a very happy kid (and the doctor could see that, even though he was a little grumpy before I realized he was hungry and offered him those Cheerios). He smiles and laughs a lot and loves to hug and snuggle with his parents. He's not overly aggressive and doesn't hurt himself or others with repetitive behaviors. So a lot of the stereotyped issues are not the problems we're having. But he can't communicate unless Mommy reads his mind. And since Prof. Charles Xavier and I are not the close-knit buds we used to be, we need other resources if we're going to help him interact more effectively with the world. All I want is to know what's going on inside that little head of his and I hope one day he'll answer when I ask him.

Monday, January 9, 2012

Jan 2012 and Alexander's diagnosis part 1 of (who knows)

We've been sick sick sick the past couple of weeks and busy busy busy to boot. I've been wanting to do a big update on here but the list of things to add just keeps getting longer. So here's the list and I'll elaborate later. (I've put a couple of posts on my Living Up blog since Christmas if people are interested to see what I've been up to personally. Basically you gotta check both blogs if you want the full scoop.)

Uncle Brian going on mission to the Phillipines
Johnson family Thanksgiving visit
Alexander preschool news (with 'artwork' uploads)
Jacob general update
Kevin's kayak trip
Christmas (events and gift list)
General year summary and family new years' resolutions 
Derek's wedding and Brown extended family visiting
And last but not least, Alexander's Developmental Diagnosis

I'm sure the last item is the topic of most interest to many of you so I'm going to start there now. Alexander had an appointment with a Developmental Pediatrician at Marcus Autism Center on Friday. The doctor officially diagnosed him with Autism Spectrum Disorder. They'll be mailing me a full report in a few days so I'll have more info about exactly where he falls on the spectrum and things like that when the report comes. Basically though, this diagnosis isn't telling us anything we didn't already know about our little boy. It does, however, open up a whole lot of options when it comes to our insurance covering therapy and applying for the Deeming Waiver. The doctor has "prescribed" Alexander going to school 5 days a week instead of just 3 like he is now because routine and consistency will be the best thing for him.

She has also given us a second referral (the first referral is a looong story) to the feeding program at the Marcus Center. She's diagnosed him with a concurrent feeding disorder, which means it's a separate issue from his Autism although the two could be related. Apparently, Food Selectivity is the medical fancy term for being Uber-Picky. I'm enjoying finding out the "official terms" for these things. I'm planning on becoming an expert on all things Alexander (and Jacob) health related in my life.

Anyway, Jacob is officially demanding my attention so I'll try to write more about this later. That's the basic rundown though. Family and friends can feel free to leave questions in the comments or email me or call me. Can't promise I'll be able to answer everything because I don't know everything yet myself. I'd appreciate prayers for me and my family as I begin the hoop-jumping process in earnest. My To-Do list just got HUGE. :-) Also, here are some links where you can find more general information about the topics we're focusing on lately...


Oh, and a picture for the heck of it...