We were standing at the little window and I was talking to the administrative assistant at Beth’s occupational therapy (OT) center. “What do you mean we don’t have an appointment?” The administrative assistant said she called me a few days before to warn me, but I missed the call, mostly because the number she used to call me was different from the one I use to call the therapy center. I didn’t recognize the number so I let it go. Also, I had an insanely busy weekend with swimming, an organized play date, bowling, and other small things so I never checked my messages. I screwed up for sure, but the therapy place also has a ridiculous policy of not scheduling appointments if insurance approval is pending, which unfortunately for my primary insurance means every few visits a report must be submitted and more visits must be approved before I can schedule more appointments. Also, the OT center also has a policy of not scheduling too far ahead of time which overlays with the insurance scheduling issue and results in a scheduling a nightmare. My understanding was if I would have picked up the call, we would have had an appointment.
At that point, I looked down at Beth who was so excited to go to “gym class” (our fun name for OT therapy) she was jumping up and down with a big smile. We reviewed her visual schedule and previewed the session on her talker (iPad with Proloquo2Go) all the way to the OT center, which was a 30 min drive from our home. It broke my heart into pieces that she could not go to the session and it also made me very, very mad. I spewed something like, “If you are fairly certain that I will get the insurance approval, why can’t we just schedule the appointment. It is a stupid policy.” Then I stomped out of the place with Beth in tow. I was mad at myself, mad at the stupid system, mad at the fact that the stupid number they used to call me was different from the one I use to call them, mad at therapy in general, and just plain mad, mad, mad. I looked something like this:
I put Beth in the car and then had to load up the stuff. The heavy bag had a huge ball toy I wanted the OT to see Beth use, the scissors we would use for cutting, her stylus for writing, her work/fun iPad with her writing app, etc. I threw it in the trunk of the car with force and screamed as I did it and then I went into the car and cried. I felt like I had totally failed Beth. I turned on the car and a peppy Jack Johnson song was playing. I looked in my rearview mirror and there was Beth, bouncing away happy as can be. I took a deep breath, calmed down, and realized she was fine. And once again, a little child with autism was teaching her mama a big lesson in flexibility. Clearly we needed to turn this ridiculously failed trip into a positive. It was almost lunch time, so I decided we should eat at a nearby Wegmans, which would be a new place for Beth. They have a buffet and she could choose some favorite foods and try new foods.
After seeing the inside of the cafe at Wegmans I was a little nervous, because Beth usually hates dark interiors and she was eyeing the place with caution. We grabbed a small cart and things started to look up. The small cart had a little shelf at the perfect level for me to place her iPad so Beth could easily use Proloquo2Go as we were choosing our food from the buffet. Awesome! She rejected 2 things I offered her and settled on the mac and cheese. We made it to the table, and as she ate she was staring at some decorator windows in the interior of Wegmans. I modeled the “What’s that?” button on Proloquo2Go and she pressed it after me. I answered “windows” and she verbally repeated “windows” in a way that showed she was satisfied with my answer.
We were almost done eating at Wegmans when I had a thought. Why can’t I just pay out-of-pocket for the OT sessions if they schedule them ahead of time? Who cares if the insurance approves, because we have money in our budget set aside for therapy. I placed the call, the OT center returned it and the response was staggering. Even if I agree to pay out-of-pocket if the insurance does not approve the therapy they will not schedule the appointments ahead of time, because my secondary insurance is through a state program for kids with autism and there is a contract that prohibits direct payment. Why? To give low-income kids the same opportunity as high income kids. Um, okay. And at that point, I turned my gaze to the pub within Wegmans and drinking myself silly seemed like a very good idea (of course, I did not, because Beth can’t drive yet).
We headed across the parking lot to a bookstore. At this point Beth seem disorganized and not in control of her body. She was flapping her hands high and at face level. That could mean only one thing…she needed to have a bowel movement. And we were 35+ minutes from home. To make a long potty story short, the combination of eating beforehand, sitting on the potty for a very long time, and sucking down a juice through a small straw got the deed done (eating and sucking triggers peristalsis and relaxation). This was a major victory. In fact, she had done the deed in public two days in a row. It is a potty miracle for a little girl with low body awareness. But after getting a chocolate milk reward at the book store cafe she still seemed out of sorts, flapping rapidly and out of control of her body still, so we went home. And, of course, she went some more. Finishing her bowel movements is a huge issue, so it was no surprise. That she did the deed in public two days in a row was a huge step forward in the potty war.
When we got home, Beth went upstairs and decided she wanted to hang out in her room. I left her alone for a few minutes to set up a game downstairs and came back to Beth downing a tube of Colgate Total toothpaste. Terrific. I yelled that she shouldn’t have eaten it, which accomplished nothing. Then I made the call to my husband and, after an exchange of instant message pictures of the toothpaste tube, we decided she had eaten about half the tube. Then I made the call to poison control. The person on the line decided we should watch and wait after a calculation (based on Beth’s weight and the max she might have eaten). Other than some messy diarrhea, Beth is fine.
Yeah, it was a shitty day both figuratively and literally, but it had its upsides. I am grateful Beth handled the major schedule change like a champ. I am grateful Beth went potty in public. I am grateful she has the motor planning ability to retrieve a tube of toothpaste from what we thought was a safe location (out of reach, in a drawer, out of sight…I am still trying to figure out how she got to it). And, most importantly, Beth did not get harmed by the unfortunate toothpaste ingestion and she did not have a stressful ER visit. On second thought, it was a really good day. It is all about perspective.