Made of Gray

Day 2 & 3

Holly D Gray18 Comments
AUGbday4
Day 2 for Caleigh at school was just plain bad. She didn't want me staying with her so after getting her settled in, Eric and I left. Apparently from the time line given to me and the conversations I've had with Caleigh this is how the day went......

Puzzles, announcements, circle time, lesson, songs etc.
The nurse came in and gave fluid.
Speech came in and Caleigh became agitated with her lesson.
The teacher and aide decided to change Caleigh's diaper thinking that must be what was wrong.
Once they were done PT and OT showed up.
At this point they took Caleigh's iPad to look at how it was set up and she continued to scream and cry. The crying and screaming got worse and they spent the next two hours trying to console her.

When Eric and I showed up to get Caleigh she was being driven down the hallway lethargic and whimpering. Her glasses were fogged over and we immediately took her out of her chair. We talked to the teacher for a bit and she explained some of the morning. Caleigh was still whimpering in my arms at this point. The teacher ran back to her room to get the iPad. While she was gone, the speech therapist introduced herself in the hallway and then proceeded to tell me that Caleigh "didn't pay attention during her lesson."

We headed to the van after getting the iPad. I put Caleigh in her car seat and went to pull down her shirt when I noticed that her g-button pad was falling off. I took it off and went to put it back on when I noticed something strange. On the bottom side of her g-button there was an area of bright red flesh coming out of the button hole. It looked like insides. It looked like the button area was pushing insides out. She has never had anything like this before. Caleigh's belly was huge. We could tell that she took in a lot of air while crying for so long. We immediately called the surgeon's office and took Caleigh home waiting on a return call. We laid her down for a nap and canceled OT for that afternoon. I called the school nurse and told her the situation.

When Caleigh woke up from her nap, her belly was smaller and the red tissue had gone back inside the stoma. A few hours later the surgeon's office called us back and suggested that it was a tissue hernia probably caused from straining. They actually asked me if I was able to "push it back in." Uh, no was I supposed to try? They told us to watch it and let them know if it comes back.

Caleigh was tired and lethargic the rest of the day. I put her to bed 30 minutes early and she slept until 8am this morning. It wore her out.

So as of this morning we took the day off from school.

My initial reaction was to pull her from school. Pre-K is voluntary after all.

I think it was pretty naive of me to leave her at school on the second day. Eric and I were completely repetitive when it came to calling us. They are aware of Caleigh's medical issues. Accepting defeat and calling the parents is not something they wanted to do. They thought {and still do} that Caleigh was being a typical child hating the new routine and missing her parents. Not true.

In fact, after talking with Caleigh the story came together for us.

The time line looked like this:

Circle time was good. Fluid went well. When the speech therapist came in she brought a clip board with pictures on it and then proceeded to ask Caleigh to touch whatever picture corresponded with the answer. Caleigh's iPad was not there for her to use. She started getting antsy, becoming more verbal and that is when the aide took her away from the activity to change her diaper. This upset Caleigh. The OT and PT came in with equipment. They talked to the teacher and took Caleigh's iPad to look through Proloquo2Go. Caleigh lost it. At this point it was no turning back. Fluid was given again while a leap frog toy sang the ABCs which helped calm Caleigh for a moment. I can only imagine how many times they played that stupid toy for her. Caleigh's tummy started to hurt. I assume from the air, crying and fluid. The pain made her cry more. Fluid was given again an hour later and the nurse reported the g-button site clean and fine. The rest of the morning was spent trying to console Caleigh any of the typical ways you would console a child. Including holding her like a baby and swaying. Not happy about that one.

Bottom line. Caleigh wasn't able to talk when she wanted too. Her biggest fear at school, and it happened.
AUGbday2
Our problem with the morning? No one called us, and they should have. Caleigh's self soothing skills have never been perfect, but the fact that her body acted in the way it did speaks volumes. I can only imagine her frustration when she realized that she wouldn't be able to talk and no one understood her cries. A friend equaled the situation to sending her neuro-typical child to school and then the teacher putting tape across their mouth. I just can't wrap my mind around the fact that no one called us.

So this morning Caleigh slept in till 8am and I started making phone calls. I talked to the nurse. The teacher called me during a break. The speech therapist called me this afternoon. We have a semi-plan as of this evening.

Tomorrow, I will take Caleigh to school. I'll leave, but probably won't leave the parking lot. She will do circle time and the normal first hour things since that hasn't been a problem. At 9am I will go back in the classroom as center time starts. I'm going to give another training on the use of Caleigh's iPad. I have to do this with the teacher and 3 aides plus the speech therapist. At that point, I will decide if Caleigh has had enough or if she can stay longer.

The deal is that Caleigh could care less about being without Eric and I. Trust me, I've asked her. I've asked about over stimulation. I've asked her a lot of questions trying to pinpoint the problems. It all came back to "not talking." The teacher seems unconvinced of this notion. She thinks this is typical behavior for a 3-4 year old the first week of school.

I plan on being in the class when any therapist comes to see Caleigh. Evaluations are needing to be done before our next ARD meeting and I feel like we won't get anywhere if I'm not involved.

We are coming up with a time limit on Caleigh's crying. If she reaches that time limit they will have to call us. Period. The. End.

I explained Caleigh's vision to the speech therapist today. She hadn't read her file before seeing her in class hence the "she wasn't paying attention" comment. Out of the three aides only one of them is physically able to handle Caleigh and it isn't done well.
I like everyone on Caleigh's team. I don't want to give up after two days, but this is difficult. We've put so much effort into her going to school. Very difficult decisions.

I feel like this post is a bit scattered, but I needed to get it all down. As of tonight Caleigh says "I don't like it." When I asked her what it was she doesn't like she spells out "s-c-h-o-o-l." She has agreed to give it a go tomorrow with the plan above. We'll see how it goes.

I had to go back and read my post from Caleigh's first day of school where I said:
"I don't expect everyone to read Caleigh's mind like I can and most certainly not right away. It will be a learning process for everyone getting to know her."

It still rings true on the eve of day 4.
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