Sunday, January 30, 2011


We're making connections, and today was a fun one. We were in the produce section of the grocery, and T stood next to the tomatoes, saying something quietly and looking at me intently. I got closer and said, "I didn't hear you buddy...say it again." So then, very quietly, he sang " tomatoes" (which is from the opening credits of Veggie Tales videos, for those of you who are not familiar with them). I laughed out loud and congratulated him on making that wonderful connection!

Such a sweet moment. Next time I'll take him to find squash to make him smile and potatoes so he can waltz. :)

Sunday, January 16, 2011

"Good Job, T"

T has reacclimated himself to the church service, now that we've been attending regularly again this month. We missed several Sundays in Nov & Dec due to illness, travel, etc, so that when we started back this month, we had a bit more agitated talking and refusals to leave during children's time or go down to take communion. (Only after I asked him if he wanted a piece of bread did he decide it was a good idea that Sunday!)

Today he was very happy during the service, so the congregation was treated only to a few happy vocal exclamations until the prayer. He was being so good and so quiet, with his hands folded in prayer like mine, that I couldn't help myself. I leaned over and said "Good job, T".

Echolalia. If you are not familiar with it, it is very typical for children with autism to repeat either what has just been said, or something that they've heard previously and which they enjoyed hearing for some reason. Lately, not only has T has been echoing lots of what I say, he will even repeat the "um-hums" or "yeah"s that he hears, and demands that I repeat them back. Perhaps it is a way to connect with me, or an initial attempt to participate in a conversation. Whatever the reason, he repeated "GOOD JOB, T" in a most confident and present voice. I had no choice at this point (due to the intensity of the stare) to repeat it back quietly, then thankfully, there was only one more "Good job, T" out of him before he went back to sitting quietly. I just had to laugh - it was so completely charming and funny! And I'm sure that anyone nearby knew exactly what was going on, and the parents at least were silently laughing with me.

Wednesday, January 12, 2011

Brief scare with Anthem

T receives full time ABA therapy paid for by insurance.

I realize the miraculous statement that I've just typed above. Big Midwestern University, Rob's employer, covers it. That's another miracle. And even if they decide to drop ABA coverage, our state has an autism insurance mandate that requires ABA to be covered fully and with no cap as long as it is part of his Treatment Plan as written by his PCP. This is probably the main reason that despite a finished PhD, we do not plan on going anywhere anytime soon.

Up until recently (approx 2 months ago), there were no in-network ABA providers, period. So Anthem had to reimburse us at out-of-network (i.e. much higher) rates. December 27th, the Monday after Christmas, as we still basked in the happiness & busy-ness of post-holiday winding down, a letter arrives from Anthem saying that they are building an in-network group of ABA providers...and our center currently is not in-network.

Okay, I acknowledge that they have the right to do this. I'm a little surprised that they haven't done this before. But the timing of it - right after Christmas - and the way they went about it - just kind of stinks. Before sending the letter to us (and all Anthem customers whose child/ren receive ABA), they invited small clinics to become in-network that are in towns within a 50 mile radius of Capital City (where we live), in addition to independent providers of ABA. My brain went to some very scary places...would they say that their network had been built and no providers close by would be allowed in? They could easily say that these other clinics are within 50 miles...ooh, I could see this going very badly.

However, I also knew that somehow this would all play out okay. And I'm glad to say "so far, so good." The nurse case manager assigned to us has assured us that to the best of his knowledge, Anthem will not keep a provider from joining if they choose to do so. (Whew.) Our center and the other local centers are banding together to work with Anthem; it seems that ultimately going in-network will be inevitable, and that may end up not being so bad. Fingers crossed. If this happens, then at least we will probably be able to relax about insurance coverage for T's ABA for another year. In the meantime, we take every minute we can get.

After all the drama in late 2009, the PhD running T's center has proven that he has the kids' best interest at heart - and while he needs to keep the center up & running, he is NOT doing this to get rich. So even though I could be flipping out about this, I'm remarkably calm. Yes, I recognize that there may be a bump or two while this gets ironed out, but I believe it will be okay.

Sunday, January 09, 2011

Disney World!

We did it! After years of wishing (and many years of having given up on the dream/expectation that we'd take our child to DisneyWorld), we took T...and he had a great time!

  • He didn't make a thing over flying. In fact he really seemed to enjoy it, looking out the window much of the time while listening to Baby Santa on our iPod. The only tough moment was accidentally leaving a plastic bracelet (think Livestrong), his current favorite fliptoy, on the airplane. I was able to find another almost acceptable replacement (small plastic slinky) and eventually all was well.
  • He ate and slept well away from home, and didn't mind the characters. In fact, he didn't make a thing over them - just kind of looked at them as if they were just other people. He continues to be one of the most non-judgemental people I know!
  • We found out that he's a Lady's Man. The only character he greeted by name was Minnie Mouse. He blew a kiss to Cinderella in return to one she blew to him. Those two moments were the only interactions he had with the characters!
  • He is my rollercoaster buddy. We took a chance and had him ride Big Thunder Mountain Railroad, and he LOVED it! Laughed and giggled all the way. He had such a good time that we asked if he wanted to ride it again, and he answered emphatically "YES!" Expedition Everest turned out to be much, much more intense than any of us expected, but he recovered much more quickly than any of the rest of us who sat down for 30 minutes trying not to throw up.
  • He loved Soarin', the simulated hand-gliding ride over California. He looked at me at first and was pretty scared when the IMAX screen started up, but I told him he was safe, and within a few seconds he was grinning and laughing. Confession: he watched more of the movie than I did (I had to look to the side several times) and way more than Rob did (he admits to closing his eyes for much of the ride!)
  • Overall, he really was a trooper. Talk about a change from the normal routine...and he went with it!

Many, many thanks to my brave and generous parents who made this trip possible, and to the most supportive & connected sister ever who added to the fun and gave constant support the whole time. My heart is full of gratitude. We have been given the gift of fun & happy memories as a family, as well as the knowledge that our boy is capable of travel and new experiences.

More details as I remember them. I want to go back!!!