Insurance

We are really, really, really lucky to have health insurance that covers T's ABA full time. I always hold my breath when the EOBs arrive, despite several years now of invoices reimbursed. Only occasionally is there a bump in the road, and today brought a bump. For no apparent reason, insurance has decided that it will only reimburse partially. "Charge exceeds the allowable amount for this service" and "Charge exceeds fee schedule/maximum allowable or contracted/legislated fee arrangement." Odd, because nothing has changed from the previous invoices. Hourly fee structure changed back in March, and this is for an April invoice. Other March invoices, since the fee schedule change, have been reimbursed.

Sigh. Here's to hoping that it was just a data entry error.

Tomatoes

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 "If...you...like...to...talk...to 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. :)

"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.

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.

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!

Highlights:

• 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!!!

The Lord’s Prayer

My mind has been spinning in some very interesting directions since reading Autism Prophecies by William Stillman. He's also written Autism and the God Connection and The Soul of Autism. (I can't wait to read those.) I highlighted sections, took notes, and every time I recalled an event that I thought was wonderful and kind of spooky, I wrote it down in the back of the book. Suffice it to say, I believe this child is connected with God in a very deep, very real and possibly very tangible way.

Tonight gave me even more proof in my theory. After getting out of the shower, he gave me his usual wet hugs, and then said something that sounded like "Pray". So I said our usual goodnight prayer:

Father, we thank you for the night
and for the pleasant morning light,
for rest and food and loving care,
and all that makes the world so fair.
Help us to do the things we should:
to be to others kind and good,
in all we do, in all we say,
to grow more loving every day.

He finishes each phrase for me, and has even on occasions repeated entire phrases. Side note: one day, a few years back, one of his ABA therapists was particularly sad; her grandmother was very ill and dying in another state far away. She was doing her best to hold it together while working with him that day. When I picked him up, she reported to me that he was saying "Father, we thank you" and "grow more loving every day" repeatedly throughout the day.

Okay, how did he know to pray for her?

That's just one of the sort-of-spooky and wonderful moments I'm talking about.

Back to the Lord's Prayer: after saying our evening prayer, I thought that I should also start teaching him the Lord's Prayer that he hears every week at church. So I started to speak the words, and he looked at me, smiled broadly, and started jumping and dancing around! I've written before about this child being excited to pray, and here he is again, literally dancing with joy hearing the words Jesus taught us to pray.

I think William Stillman may be on to something. These children may be teaching US.

 

 

Music Therapy – first appointment

T had his first music therapy appointment today! This is something I've been drawn to for him for years, and today it began. His therapist, Anne, let him explore during this first session. The room was filled with rhythm instruments, a few keyboards, bells and noisemakers. He went to the keyboard right away and found his "A" (an octave up from the lowest note on the piano). He always must find this particular note whenever he sees a piano anywhere and today was no exception. Anne observed and attempted to play what he was playing, but was playfully rebuffed: "No sing", "Green sing", or my favorite new one: "Stop it." There was never an angry moment – insistent perhaps, but never angry - which is good! He also played the bells (nine of them, all different colors, with a button on the top that you press like the "service please" bell you see in stores), the rainstick, maracas, rhythm "eggs", and a new favorite: the big drum.

I stayed in the room the whole time – 45 minutes!!! – so I could observe and translate (green is a negative adjective, "no-okay" means no, etc.) Both Anne and I tried to get T to sing, but he was a little on edge today – but again, he was in good spirits the whole time. We were hoping for a good 30 minutes – Anne said that many times, her new clients are looking longingly at the door after a few minutes, but not this little guy! He said "stay here" when given the option to go in the car or stay. So 45 minutes it was – and Anne was so pleased (as was I).

While the session went on, I realized my long term goal for him: to be able to share music. Right now, he is very territorial and protective of the music he makes. He can sing, but does not want others to join him. When he plays piano, no one is to try to play at the same time. Unexpected singing is very, very aversive. My theory is that he has such wonderful music going through his head continually that any other music disrupts it. This could also explain the aversion to phones ringing, inventory chimes going off in fitting rooms, electronically generated doorbell chimes, etc. (in addition to the auditory sensitivity). When I told Anne this goal, she smiled and said that it was a good goal, and if that is what he gets out of music therapy, then what a gift it will be. Agreed! Next appointment in two weeks. Can't wait!