Treatment Days 10,11, and 12
More roller coaster like days of treatment Ayden has given us… The last three days of the workweek were stressful ones, but overall, it ended well. Ayden has shown progress. I’m trying to look at things as half full instead of half empty. Okay, so here’s the deal. Ayden has proven to be a perfect candidate for this program simply because he definitely needs a behavior-driven program. He needs intensive work with skills and overall oral motor function; however, he seems to be so afraid of even “trying” to swallow the food once it’s in his mouth. Another thing, his inconsistencies (to me) shows great stubbornness from lack of control. It is a way for him to continue to try his luck in gaining control of the situation. He is still telling us that he does NOT want to do what we are making him do.
I don’t know what to say about Ayden. I’ve learned that he is a topic of conversation throughout the clinic and I’m sure he will be a child reflected upon once we leave. It’s funny because one day, Ayden took a bite without any resistance and any negative behavior, and of course, much praise was given. Everyone knew about it by the end of the meal (you could hear all the cheering and singing from a mile away). Anyone that saw him afterward gave him so much praise and support about doing well during that meal. After speaking with one of the employees familiar with his progress, she told me how she felt that Ayden had come so far since his start of the program. I couldn’t help but question why she felt that way, considering Ayden hasn’t completed an entire day without needing more than one person in the room for support. Also, compared to their “typical” timeline, he is a bit behind the curb. Of course, they would follow my last comment up with “every child is different,” but I’m not Boo-Boo the Fool. I pay close attention to everything said, and when it comes to Ayden and his care, I have the member of an elephant. I couldn’t tell you how many times I’ve heard “typically we see this” or “we usually expect to see that.” When Ayden does not respond with those “typical” actions or responses, I know it throws them off a bit. It will never be admitted or shown to me, but I can see it.
To be more specific on what is going on with Ayden, Ayden is having a tough time accepting any food in his mouth without attempting to wipe it out somehow. He has no problem taking dry spoons or tools, but once you put some type of “anything” with taste or texture to it, he freaks out, literally. They’ve attempted different veggies, fruits, even juice. He is currently back to pureed fruit. They’ve reached a point where he will allow the food into his mouth, but he will not attempt to “purposefully” swallow it. They have been working on him not trying to wipe it out using his clothes, and he has stopped for the most part. Instead of wiping on the sleeves of his shirt, he slobbers it out, or he may accidentally swallow it. To aid in stopping that behavior, I’ve been putting tank tops and sleeveless shirts on him going to meals because he refuses to wipe anything on his bare skin. I still must change him after every meal, but it's because of the slobbering and not because of him wiping food out of his mouth.
So, the improvement includes allowing the feeding techs and specialists to put food in his mouth and directly on his tongue without much fight or aggressive behavior. He also needs a quick recovery of calming down after each bite. We need to continue working on stabilizing this behavior by reducing his attempts to discard food once placed in his mouth and the consistency of his positive responses to the meal as a whole.
If I had to say what the most challenging part for me is watching him fight the way he does and not know what to do about it. I’m honestly more afraid of him hurting someone than I am with someone hurting him. It has finally been admitted that Ayden was underestimated. Now, whenever people work with him, they must really go in prepared with energy, alertness, and body armor because you never know what to expect from him, lol! Just kidding (not kidding)! At one point, they had to use the most restrictive form of holding for him, which was still extremely hard for staff members. I’m not sure how I feel about staff members requiring training while working with my son because the techniques and procedures put into place are foreign to them. Due to that, they are not familiar with it, and they need to be shown how to do those particular things the correct way. We all know what I’m talking about. The things that we learn or hear about but usually never see or are required to do. Yea, that stuff… Those in charge, seem to come up with things on the fly for Ayden. I know that times require that. As parent, it can get nerve-racking to watch.
The other thing that bothers me is that I do not know and have not figured out his triggers. I don’t understand why one minute he is fine, and the next minute he is screaming bloody murder or crying.
This week, as a team, we are supposed to go over his “official goals” for the program. They always work with a client for 2 weeks to really get a chance to evaluate and see what they are working with. They develop realistic goals with the parents that they feel would be appropriate and best for the children they see. I’m praying they align with my personal goals for him. You know what, I don’t’ even know why I said that. I can’t even tell you what my personal goals for him are. I always said that I just want to see progress, but y’all know I really want more than that. I want him eating steak and potatoes after all this shi*t we’re having to go through being here, but I know I can’t realistically expect that. Like always, my nerves are SHOT! I’ll get through. Just pray for me. Okay, Monday (day 13), let’s get it, let’s go!
As my friend Jill has reminded me (thank you, girl), NO ONE will have more faith in his success than me and his father. I don’t just hope, but I know that this treatment will work, and Ayden will leave here showing great success. Jill, I promise I will take a break… one day!!!
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