Friday, September 10, 2010

Day 15

Wednesday, September 1, 2010

Routines are a wonderful thing! One of the things I love most about being an autism interventionist, is teaching parents how to use PRT (Pivotal Reponse Training) during their daily activities and routines. I love seeing how empowered parents become when they realize that they can learn to impact their child's progress and that intervention can be easily built into everyday routines. I found myself appreciating how my daughter's treatment (i.e., radiation and meds) was becoming routine. It was a routine I didn't want but was glad that we could find some comfort in it!

After two days of screaming that she was starving first thing in the morning, Eileen and I got smart. It's amazing how many Ph.D.s it takes to get things done :) Anyhow, we brilliantly realized that it would probably minimize Nina's hunger and discomfort if we woke her up at midnight and fed her a meal. 12:30am we woke up Miss Nina by presenting her with a platter full of homemade waffles with strawberries and whipped cream. The only words out of her precious mouth were, "Oh...I think this is going to be delicious!" Delicious it was and she gobbled down every single bite! When she woke up in the morning (8:30) she was still hungry but didn't scream or cry like before!! Thank goodness!!! Midnight meals were going to become yet another Fredeen family routine.

By now, Cindy and I had the radiation routine down. We would arrive (usually announced with Nina's scwapping) on time, Cindy would have Tinkerbell playing, she'd collect vitals while I recounted the previous evening's details, I'd tell Cindy what Nina had last eaten and at what time, the anesthesiologist would come in and say hello, we'd stroll Nina down to the hallway outside of the treatment room, the doctor would administer Propofol, she'd pass out, treatment would be delivered, and she'd be strolled back into the room for recovery. Routine!

Another new routine was Nina telling us what she wanted to eat after sedation. Today she proclaimed it was oatmeal with brown sugar day. So...Auntie Eileen scurried around until she found oatmeal with brown sugar. The honey-girl ate every last bite and we happily left the Cancer Center.

We had also created some new routines at home. First of all, Nina and Teddy were no longer sharing a bedroom. Nina's was downstairs and Teddy's upstairs. Secondly, we had permanently placed a full-size mattress smack dab in the middle of our living room. This way, Nina could lay down comfortably and still be part of the hustle-and-bustle of daily life. Third, Teddy and our neighbors (Cami an Katie) had become used to Nina being very tired and not playing outside. Instead of complaining or excluding her, they adapted and played games with her on top of the mattress. Kids are amazing!! New routines can be equally amazing when they bless someone who is suffering!

As soon as Todd announced that it was bedtime and that Teddy needed to go upstairs and get ready, Nina started to cry and whimper. I asked her what was wrong (she was laying on top of the living room mattress) and she informed me that she was scared to go to jail! I knew I had to do something. I asked her how I could help and she shrugged her shoulders that she didnt' know. Then I had an "Aha" moment. I asked her if it would help speaking to the officer. I explained that I could call him and then he could tell her it was just a joke, that kids can't go to jail. Through her tears, Nina said my plan was a good idea but refused to talk to the officer. She wanted me to talk to him. I agreed that I would!

Now I needed to find freaking Officer Paul....who could play the role?? I called Kyle and asked him if he could disguise his voice. He thought he could but I quickly realized that there was a high probability that she would recognize him and then my whole plan would be ruined. That's when I thought of Mario. Mario is one of my fabulous colleagues and was coming over to finish a few work related scheduling issues. I called him and asked if he'd be on board with my scheme. He sweetly agreed and we were off to help Miss Nina.

Eileen and I sat next to Nina on the mattress and told her we were going to call Officer Paul (I just made up the name and she bought it!). She reminded me she didnt' want to talk to him and I told her I'd put him on speaker phone so she could hear him. I called Officer Paul (aka: Mario) and he proceeded to tell Nina that he was deeply sorry for scaring her, that he had only been joking and that kids can't go to jail. As this conversation was taking place between me and Officer Paul over the speaker phone, Nina lay very still and listened to every single word. She looked so tiny. I checked in with Nina while Officer Paul was on the phone. I wanted to make sure she understood it had all been a big mistake, that the Officer had only tried to scare her and Teague. She nodded that she understood and then we all said good bye to Officer Paul!!!

Mario was Nina's superhero that night. After he spoke to her, she brushed her teeth, crawled into bed and slept perfectly through the entire night...well except for when we woke her up for her midnight meal of waffles, strawberries and whipped cream, bacon and little smokies. Then she went right back to sleep and no longer said she was scared to go to jail!!! Thank you Officer Paul... I mean Mario!!!

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