First Seven Days of Therapy

Okay, just for understanding, I will reference what Ayden is doing as therapy and treatment. I am using them interchangeably. He is here for "Intensive Feeding Therapy," but it is like a treatment. Anyway, I do not want to, nor do I have the time to go over the rules or technicalities of why one should use one word over the other. Just let this be your notification of what I am referring to. Now, to the good stuff...

These first seven days of treatment started as an emotional roller coaster... for me. Ayden has been just fine. I will sum up the week as a whole and as quickly as I can. If I went day by day, you guys would be reading forever. I will not leave out anything important.

Day 1: Interesting. We arrived late. I underestimated Atlanta's traffic and learned a valuable lesson. If the GPS says 10 minutes to destination, add on 15-20 minutes realistically. By the time we arrived there, I was sweaty and already looking stressed out (great first impression, I'm sure). By the end of the day, I left in my feelings. I had to really check myself. Okay, let me back up. Before coming to Atlanta for treatment, we agreed to allow Ayden to participate in a study to determine if rapid tube-weening could help speed up a person's ability to eat by mouth while receiving intensive feeding therapy at the center. I cannot share right now if Ayden is in the test group or the control group (Lord, help me keep that undisclosed!), just in case someone working as a part of the study gets word of this blog. Anyway, each day, Ayden must get his weight taken. We did that. Each day is broken up into 4 meals. First meal, I had to do a "meal" with Ayden. It showed the group how Ayden acts during mealtime and how we offer him food (I looked like a damn fool, by the way).

Break Time!

The treatment team used the second meal of the day to do a preference assessment. They handled that. The part that rubbed me the wrong way was that they did not let me know that they kept all the toys I brought to keep during his treatment. I had nothing for him at our apartment! Ugh!!! I had to go back out shopping for toys that he DID NOT have before to have "something" to play with when done with treatment. Ugh! During this time, I also met with many of the staff working with him and went over more rules, policies, etc.

The third and fourth meal was the start of business and my blood pressure rising. During the meal, Ayden was Ayden (In my eyes), but of course, they do not know him. He stems by doing several different things, one of which is by hitting his chin with the back of the hand. He does it when he is happy, sad, upset, nervous, whenever. He does not do it to hurt himself, but for soothing or his way of expression. He also rocks, and he likes to press his top teeth into soft things. Anything soft such as clothes, pillows, furniture, people... Of course, he did all those things during treatment because he was upset with what they were doing. Instead of talking to me about it or asking me about his behaviors, they expressed their concern to the program director. By the time the fourth feed came about, he had come to watch Ayden and determine if he would be eligible to participate in the study. I was pissed.

I was pissed for several reasons:

1. I was sitting there the entire time. I did not see anything that I felt would be out of line for any child going through that treatment. If there was a question about what he was doing, why walk past me and not address it?

2. No one ever discussed specific behaviors that are not appropriate and could disqualify him from participating in the study. If they had told me what was and were not permitted in the study, I would have told him what he does, and then they could have determined at that time if he would’ve been eligible. Yes, they asked me about him being violent during feeding, but he does not. Not like what they assumed. Based on what they saw from him, they were afraid of the "possibility."

3. We had our start date delayed being in this damn study. If there were a possibility of Ayden NOT qualifying for the study, we would have jumped on the first slot available for him to start and called it a day.

4. Lastly, I was just overall overwhelmed by everything, and all of that just intensified my already fragile feelings. I was missing my baby and my husband. I was nervous and lost on what in the world I was going to do with Ayden once we left there because he was bored and needed to play. He was starting to act out because he could run off all of his energy, and he had to do a lot of things he just did not want to do... all day.

The first day was hard on me; however, by the time we left, Ayden was already showing progress with the therapists he was working with. Things were cleared up after the director stayed for a while and watched Ayden, and he even worked with him some. We (Ayden's care team) did a lot of taking. I did leave with a chip on my shoulder; however, I feel I was justified for it. I decided to let it go and move on. I was not in Atlanta for me but Ayden. I took my personal feelings, apprehensions, and negative thoughts and shoved them to the side, and thought about what was best for Ayden and how HE responded to what they were doing. Once I saw that he was good, I was good.

So far, there has not been a day quite like the first day. Sorry, that majority of this most will be about the FIRST DAY, but hey, it was the most important day to me so far. As for Ayden's progress, just like at home, Ayden has proven my little nickname for him to be fitting. He is my cute little Enigma. Something that I like about this program is that it is very organized and structured. There is a protocol for everything. Of course, for Ayden, they have not been able to do what they "usually" do and have to resort to just do things differently for him. He brings them more to work with and study, lol. I have always said Ayden reminds me of a case study. He is strong, smart, and does NOT want to eat anything, and he is letting them know it. Everything has moved so fast since we have been here. Today was Day 7 for us, and it was the first time that The treatment team made no changes or nothing new was introduced. They work with him, but they push him at the same time.

I am pleased with what I see so far. I will blog as much as I can, but please understand that I am limited to a certain extent with the details of what I can describe here. Everything I am saying here is what Ayden and I experience while receiving treatment, and everything is MY truth, my own opinion. With that being said, if you asked the person sitting next to me in the observation room, they "may" have had a different take on the events that happened (but I highly doubt it). This is just a disclaimer.

I did not go through every little detail of what happened and what I saw because I would be writing a book if I did. I can write. I can write all day. It does not mean I'm good at it. It just means I can do it. If anyone read this and wants more information about something specific, please write me and ask. I will address it. Future posts will be better because I will not wait so long to write. That way, I can give more detailed updates about what he is specifically working on and how he is doing. Overall, Ayden is doing great. It has NOT been easy for him, but he is definitely working hard, and we already see progress.

Now, I need to figure out what in the world I am going to find for him to do this weekend, and I need to find a barber. If anyone knows any great autism-friendly activities in this area or barbers that work well with kids with autism, please send me a message!!!

These are a few pics of Ayden's first week at the Center for Advanced Pediatrics (CAPs Building) during his breaks. I got caught taking pics of Ayden in the treatment room while receiving care, and I had to delete the photos. Sorry, no pictures of the staff with him while receiving treatment.