Yesterday was another ARD meeting at Caleigh's elementary school. This meeting was scheduled to go over the assessments that the OT, PT and VI instructors had completed. Since Caleigh was not herself by any stretch of the imagination during the 2 weeks she was present at school; the OT and PT didn't get much out of the evaluation time other than what I told them. The vision team took the time to come to our house twice to evaluate Caleigh, and honestly we really appreciated that effort. Out of the three, the VI team seemed to have a more clear perspective on Caleigh. Depending on her comfort level, stress and environment; the day to day with Caleigh is different in so many ways. The PT and OT seemed to only get to see the extreme weaknesses because of the situation. Reading their evaluations of Caleigh reminded us just why she isn't in the classroom setting at this time. It was extremely taxing on her.
When the meeting was scheduled I requested to have the home bound representative at the meeting. When we arrived that person was no where to be found. We were told that they were sent an email, but did not show up. We also wanted to get the home bound process started. We thought this would be done at this ARD meeting, but bureaucracy decided to step in. We will have to attend another ARD meeting to discuss Caleigh's eligibility for home bound services. If everyone agrees that she qualifies then services will start. I'm pretty certain we will go back to ARD to adjust goals and services even though we were reassured that we wouldn't need to.
The meeting seemed to be a waste of time for us. Everyone deciding what Caleigh needed in the classroom. The classroom that she isn't even in. Of course this information will be used in the home bound setting, but one meeting, instead of two or three, would have been better. Communication. It comes down to communicating with us about the process. I don't think we would have been as cranky about showing up to the meeting without everyone we requested to be there; if we were told that the home bound eligibility would have to be at another meeting for whatever reason. This is the diagnostician's job. Enough said.
In happier news, Caleigh went to her first art class this past Thursday with her friends Emma and Lily. We had a really great time. The best part for Caleigh was reading a story and then making a clay model of the "type unknown" character from the book. Caleigh helped me roll all the balls and pick out the colors.
Caleigh says he is "a bear"
She did whine a lot. It wasn't loud, just whining. She kept saying she was having fun and that she liked the class, but when I asked her what was wrong she said "I don't like it" and then spelled out "help." She didn't like me helping her. A little bit later she said she was frustrated and again spelled out "help." It makes me sad that I have to help so much, but she really only gets this way when she is around other children her age. I suppose she can feel her differences more when comparing herself to others. Funny enough all the kids were getting help from their parents. I tried pointing that out, but it didn't help much.
The best part for me was walking in carrying Caleigh, her backpack and her child-rite chair. The teacher looked at us and told us how excited she was that we were there. She then asked Caleigh if she wanted to do beads, painting or cut and paste. We sat down and started painting right away. Did you pick up on the best part? No evaluation, No questions about diagnosis, No what can she do questions, No therapeutic value intended. Just fun. Plain artsy fun. This is what our family needs. It was wonderful. We plan on attending the 4 remaining classes of the year and then registering for spring. This particular place even has a homeschool class for when Caleigh gets older.
My panic has subsided some about our surgeon team closing. It only took me a day to find out what had happened. The biggest factor was a move closer to family for our main surgeon. We still have an appointment in December so Eric and I can decide more at that time. We have other worries on our plate anyways.
In tummy news, Caleigh had a good 3 days of feeling pretty good this week. We stopped the Alinia because of the bloody stool she was having from the sucrose in the pill. When we stopped the Alinia we started Flagyl the same day. It's been the best antibiotic for awhile now, but we can't keep her on it all the time. As of tonight though she isn't feeling great. She's back to sleeping a lot and not wanting to do anything but lay on the floor listening to music and playing with her babies. The flagyl is supposed to stop on Monday so we are waiting to see what happens and what the next step will be. I'm tired of the uncomfortable ups and downs for Caleigh, but I know that things could always be worse. I'm thankful that we are able to treat this from home and with a quick call to our doctor to discuss anything new. Thankful and Blessed. It's the season, right?