that I have been MIA because we have been doing nothing but playing non stop BUT that is not the care. Monday was the first day of summer school for Bubba. I brought him to the Middle School site expecting a change but I did not expect what I found. They were not in any way able to care for my sweet Bubba and take care of his needs. After being put in three rooms we finally ended up in a room with AC, which he needs because the heat triggers his seizures. Yes, this close to the beach not all class room, MOST in fact, do not have AC in them. So, he ended up in a room with 18 children, 1 teacher, and 2 aids. All of the children were sitting in chairs with desks on them, telling everyone their name and what they like to do. There was not a mat for him to get out on, no changing table, no books, no toys to stimulate him, well... NOTHING much at all. Now, I understand that the first day of summer school is always a bit crazy but this was just down right AWFUL!! So, Regan and I sat by Bubba's side observing and well we didn't like what we saw. The teacher was nice and was willing to TRY but really what could she do???? So, I decided to leave with Bubba, as soon as I stepped out of the class room I burst into tears. I could not believe what I had just seen and was overwhelmed by the thought that Bubba would not have a safe place to go. Then I looked down and Regan and she was in tears, she knew what this meant for her. Bubba can not go to the beach and do the fun things in the sun like she LOVES to do in the summer. She knew that those things would most likely not happen. So, here we were.... me trying to pull myself together, Regan crying, Bubba bored, frustrated, and yelling. At this point I said to myself "NO... NO this is not right!!!!" So I marched our sad little group back to the office and insisted on talking to the principal. I let her know how upset I was with the placement and that it was NOT OK. Her response made me even more infuriated... as she looked at the other woman in a soft voice "Oh, this is her first time with Middle School....." No, this has nothing to do with Middle school and has EVERYTHING to do with my child!!!!!!!! She then went on to explain that Middle School is an academic setting and that this is just what it is. By this point Bubba was crying. So, I let this woman know that I was NOT happy and that I wanted an appointment with her. Now, let me explain that this will not be Bubba's site for the normal school year we have gone to and witnessed the teacher there and LOVE it and look forward to working with her, this is just the summer school site. So, I loaded my two sweet children, Bubba's wheel chair, and their sad Mommy into the car and headed home.
As soon as we got home I started to feverously clean our home because we had a nursing evaluation with the new company that hopefully find Bubba the PERFECT nurse. I managed to get everything nice and cleaned, put on clean clothes {no time for a shower}, and got ready for her arrival. After waiting 50 minutes yes 50 minutes I called to find out if she was coming. "Oh, I had a flat tire...... MAYBE I will be there in a couple of hours." Umm.... really!?!?!? I then tell her that we will just have to reschedule for the next day. I was so upset and defeated by this point. An entire day wasted.... and the next was filled with apts.
Luckily I have the most amazing friends and they took Regan while I went back to the school the next day. I went in ready to get angry, scream.. do what ever it took. Something funny happened, I walked in to find this woman defeated, defensive, and ready to fights. It was obvious that she had been beat up on all day. So, I changed my game plan. I was kind and kept reassuring her over and over again that I was on her side and just wanted what was best for my child. I am glad that I did change my game plan because it worked! I walked out of the room with a new game plan, exactly what I had hoped for. A new summer school site. :)
I also met with the nursing coordinator. I am very hopeful that we will be able to find the perfect nurse for our sweet little Bubba.
Today I went back to the school for an addendum to his IEP so that he will be able to go to the new site. Then I had to go to the new site to drop off all of the information. It was hard and tiring and none of the fun things we had planned were done BUT at the end of the day my Baby boy will be taken care of and that is the most important thing.
I have so much to update and cute things to post but for now I will leave you with some fun pictures from ther other night. Monday night I had a photo shoot at the beach and Regan BEGGED to come, I gave in. I would not normally do this but it was my free give away shoot and it was with friends. So, I knew it would be OK. It was just what the two of us needed after a VERY hard day.
The perfect way to end a hard day...
the beach, watching the sunset, and eating ice cream.
