Saturday, October 3, 2009

Visit @ Marianjoy

I stayed up WAY too late last night after blogging, to watch the Olympic bid for Chicago to host the 2016 Olympic games. I wanted to see Michelle and Barack Obama give their side of the presentation, so I stayed up late and was not disappointed with their speeches. But it ended at 2:45a. Needless to say, I suffered greatly 4 hours later. Can't seem to sleep so late anymore now that preschool is a priority.

Nikko and I arrived at Marianjoy early. We were in a hospital room and a nurse brought in a colorful rug mat, some cars and blocks for Nikko to play with. Dr. Mary Keen normally runs late, I've been told, but she wasn't that late for our appointment. Just a little. She was a very natural-feeling woman, smiling and listened eagerly and without judgement to what I said. I brought a list of concerns and that's what we talked about. I wasn't there to get another diagnosis of autism for Nikko; I already have TWO, and it's fairly obvious. I asked about the biomedical approach as well as the GFCF diet. She was supportive, telling me that it wouldn't hurt to try the diet if I wanted to, but she was not a supporter of biomed. Instead, she suggested Applied Behavior Analysis Therapy (ABA), which was the basis of our whole conversation after that. This kind of therapy involves something called "discrete trials," where a behavior is requested, then rewarded with a desired object/action if met. If the behavior is not met, no reward is given and they try again. Pavlovian, somewhat. But practically every concern I mentioned today was met with the fact that ABA can help Nikko behave appropriately. It's about replacing the unwanted behavior with a positive behavior. Don't ask me how, truly, because I am literally at the starting line trying to figure it all out.

wrote down the concerns I wanted to address:
Biomed - she didn't recommend it
Speech - she is recommending outside speech therapy, but someone that will work in conjunction with the school for Nikko.
Stims - something ABA can correct
Signing - the fact that he is communicating is great. Continue this, especially if he's comfy doing it, but also reinforce with pictures/PECS.
Food motivations i.e. Oreos, Fruit Snacks. Bad to give in? Yes. ABA can help correct.
Nikko getting out of bed and going into Ronin's - something ABA can correct, and perhaps he just wants Ronin's company. Not a bad thing.
Auditory Sensitivity - could be apraxia. More on this below.
Clinginess - goes with maturity, and just being Nikko.

When we first got there, Nikko had already begun to whine because he didn't want to be in the stroller. I think he also wanted a cookie from the food bag. Luckily and unluckily, the receptionist pulled out a jar of CANDY. I chose the M&Ms for Nikko because I figured I could make it last longer. Nikko was enthralled with them, and even signed More Candy with me. Once they ran out, however, I had to find a replacement fast. I resorted to the Fruit Snacks in my backpack, and it became an item of focus for him later on, much to my dismay.

I told Dr. Keen about the time that I held out a cookie for Nikko but put it near my mouth so he could watch my lips. I said Cookie and wanted him to say the word or make a noise that sounded like cookie so that I could reward him with it. He signed More, and Cookie Please, but I held the cookie to my mouth and repeated Cookie. I think he could tell what I wanted him to do, because he started shaking his head in strong protest and started wailing in disagreement. It was as if he didn't want to say the word. Dr. Keen asked me if I was perhaps asking Nikko to say the word and he was trying but he couldn't do it? I thought that Nikko was just being stubborn, but Dr. Keen stopped my thought and told me that possibility Nikko could have wanted to say the word but couldn't physically say the word, because right then he didn't have the motor planning skills to do so. I realized that maybe I was pushing Nikko to say Cookie, or CUH, or OOK, but he didn't know how to say it. And I felt like such a bad person! She didn't mean for me to feel bad at all. She just put it out there that he could have apraxia, which is a disorder of motor planning, that is the loss of ability to carry out learned purposeful movements, despite the desire and the physical ability to do these movements. I remember on that day, I had read something somewhere that it was so important to try to make Nikko say a requested word. I immediately felt like it was imperative to challenge Nikko. Unfortunately, after a 30-minute tantrum Nikko gave up on the cookie and left the room completely, and I was exhausted because it was a lose-lose situation.

Back to Dr. Keen, I believe our time with her was very beneficial to us. She highly recommends ABA Therapy for Nikko, and I now agree after reading some materials as well as posts from other moms. Later in the day, Nikko was asking for Cookie. He didn't eat a great lunch so I didn't want to give in to him. Nikko turned on the relentless whiny juices and he went on and on and on. I was tired and my nerves were grating. Ultimately, and defeatedly, I gave him a butter cookie to shut him up, and then I felt bad about everything. I suddenly fell apart and told myself that ABA will help him not be so relentless about wanting a cookie from me. After I stopped bawling to myself, I started getting us ready to meet up with the Alog Clan for dad's 65th birthday dinner at Senoya Buffet. During dinner, it was Ronin's turn to crank up the whining and be relentless. He wanted the fried egg noodles from Nikko's plate. I gave Ronin some to see if he'd react, and I believe he did start rubbing his face. Therefore I restricted him from them, and Ronin was livid. Sucks having a kid be so loud in so small a place! I tried to stay calm while trying to placate Ronin but it was just awful. Nikko, on the other hand, was an ANGEL. He even got some running time squeezed in by bolting from our table to the buffet area and back. Probably very annoying to the staff, but I couldn't handle Nikko while I handled Ronin. Denis tried to help, as did Atz's Dennis. We headed home late and gave baths late. At the end of the boys' bath, Nikko started melting down and refused to stand up, refused to get dressed, and was just plain tired. I think he was probably overstimulated and hit the wall, figuratively. I'm tired, too.


  1. Here is a link about ABA that I thought might help you to better understand it. My son had ABA in preschool.

    We are now utilizing different methods such as RDI with him as he continues to grow and develop socially and emotionally too. Here is a link about RDI. Again a different approach, but each child on the spectrum is at a different level too.

    Hope these links help you to better understand that you do have options as well.

  2. Heather, thanks SO much for posting the links. I don't know how to reply directly to you; I can't find a comment section on your blog. :( But I want you to know that I'm really grateful for the information. Since that blog entry, the husband and I have been discussing other options to ABA and RDI was definitely mentioned. I really appreciate your feedback. Thanks again!