These last two days have been crazy to me. I have been on an emotional rollercoaster once again since being in Atlanta. It was days 8 and 9 of actual treatment, and all I can say about it is “damn.” Starting off, I was very impressed with how Ayden seemed to be doing. He was progressing well with people he just met! We first started the program on a Thursday, and by that Friday afternoon, I was very optimistic. By that following Monday, Ayden did as expected, coming off a weekend. His week was up and down with progression. Protocols had to be changed, tools, and we went from pureed foods to juice. Today, we went to using pureed fruit.
The biggest issue we’re dealing with is Ayden staying calm during and after having food placed in his mouth. He is highly defensive and blocks as much as he can. After he gets the food or juice into his mouth, he immediately goes to wipe it out. For the past week, I’ve had to change his shirt after every meal. Ayden has a massive issue with things on his face. He flips out about having food in his mouth and possible food or saliva on his face. So, immediately after taking a bite, he must have his face wiped by one of the feeding specialists. He needs it wiped before he tries to rub the food out of his mouth or off his face by using his shirt. Because of that, I’ve been bringing soft towels to use, so they don’t have to use the hard paper towels on his face.
For the past several days, Ayden has really been all over the place with his behavior. He is consistently inconsistent. However, he has been showing a pattern of how long it takes for him to settle down and start accepting things. According to the BCBA working on his team, this is just the beginning, and we cannot stop. Ayden has potential, and he will be successful. We just have to wait for that light bulb to turn on. When it does, there will be no stopping him. Ayden is going to eat, and he will enjoy it. We must show him how.
As I was watching him today, I got emotional. I mean, the kind of emotions you are trying to hide but can’t because it's hard to breathe or see due to the tears wailing up in your eyes. I hated seeing Ayden upset and fighting the way he was, but that wasn’t why I was upset. I guess I got scared. I saw how things were going, and I started thinking the worst. I was afraid that this treatment wouldn’t work, and we would’ve put him through this for nothing. I was scared that 10 weeks would not be enough, and we would have to leave right when he was starting to blossom. I just started to have major doubts, and they overwhelmed me.
The program’s social worker came to see me, and I expressed my concerns with her. Her timing was great! She suggested that I not watch the meals and just take my own breaks. Of course, I felt like, “HELL NO!” Instead of saying that, I politely declined. I need to see his struggles, his triumphs, and everything in between. I never want to leave his side. I want to always be his voice when he can’t get the words out. I want to be with him for every meal, every bite, every minute that he has to go through this. I will stay with him, and I will try to remain positive. I just had a moment, and I will get over this. He needs my support. I will continue to pray for his success and accept nothing less.
These pics are of his shirts after a meal. No need for a bib, he goes straight for his sleeves for some reason. My baby...
Comments