I don't know why ~ but this past week has been a sort of "hell week". I think I have cried almost every day for some reason or another. I am beyond frustration (which, I think, is the main reason I have been so emotional) with a few things. My main area of concern (and frustration) has been Thomas' IEP.
We had Thomas' IEP meeting this past Wednesday. I am very happy that Anedra was there with us...together we brought up most of what I wanted discussed. I have to admit that I'm not the best at remembering people's names. So when different people kept walking into the room, I was quickly introduced to them ~ told what their title was as they sat down and the meeting eventually started. As the different goals were introduced I was told "Mrs. so and so will be working with Thomas on this"...."Ms. so and so will be with him this time"..etc. I should have brought some name tags so they could have written their name and title on it ~ I would have liked to place a name and face with what they did and how they would be "helping" Thomas. After the 2hr meeting I pretty much had each person and their role imprinted in my brain.
There was myself, Anedra, psychologist, SLP (from school), itinerant teacher, educational audiologist, TOD (whom I found out has worked with our private SLP and our private SLP LOVES her) and a student teacher. There were 8 of us all together sitting around a table big enough for 6. I was told how Thomas did at his evaluation ~ I was told that Thomas does qualify for services based on his hearing loss alone (they go by pre-surgery diagnosis).
There were a few items that needed to be addressed and changed. One BIG one for me was addressed and NOT changed ~ which I was less than thrilled about.
The results from his testing are quite extensive, I won't go into every detail here, but he did test within normal range for both expressive and receptive language skills. Although he does have a moderate expressive language delay, a moderate delay in articulation, final consonant deletion, cluster reduction and syllable reduction.
By the end of the 2hr meeting (which was supposed to last an hour) ~ I left the meeting with the IEP NOT signed. Since the IEP was not signed and I have a few issues that need to be resolved another meeting had to be scheduled. The IEP is supposed to be signed by the time Thomas is 3 (April 18th)...the districts last day of school before spring break is April 9th, they will be on break the week before Thomas turns 3 so they need the IEP signed before the 9th. We scheduled the meeting for this Wednesday April 8th.
I think this is another point of my frustration. Jonathan is on spring break this week ~ we were supposed to take a family vacation to go visit my sister in law in South Carolina. We have ALL been looking forward to this trip. The weather here in Ohio has been pretty crappy and this week's forecast is miserable...rain/snow/wind temps in the mid 30's to low 40's. South Carolina's forecast ~ lower to mid 70's all week ~and sunny!!!! Jonathan was really bummed that we weren't going on our trip ~ we talked and decided that Jonathan and Jim should still go on vacation. So they left this morning around 330am ~ they should be arriving to a beautiful, sunny and warm Columbia early this afternoon.
This may get a little raw....
I am so totally pissed off. I am pissed off that Thomas and I are stuck at home. I am pissed off that although spring has officially arrived the weather here sucks. I am pissed that I feel alone during this process, hubby has decided to take a backseat instead of becoming more involved and taking some of the pressure off of me, I am pissed that when I talk about this to my family they listen but I know they don't understand, I am pissed that this whole IEP process is such a pain in the @$$. The parent knows what is needed for their child to succeed. They know their child best. They certainly know their child better than a professional who played with him for an hour. Certainly better than the professionals who NEVER met Thomas but based their assessments on test scores. We are not asking for alot but the school district barely wants to give a little. Do they understand that he needs these services to stay age appropriate and consistent with his hearing peers? What happened to wanting the best for each child? I won't mention which professional asked this question at our meeting but when I heard "can he even hear the sh sound?" I almost jumped on the table. The audi said "oh yes, he hears the sh sound. that is what is so great about the cochlears..they are so different than hearing aids". I wanted to ask the person who asked this question "Have you EVER worked with a child with CI's before?, If not, please leave". But I didn't. I kept my mouth shut. If I would have said anything at that point I knew I would have spoke in a really $hitty tone ~ I don't want to be labeled "difficult" before Thomas starts school.
I am pissed that we even need to do this IEP for Thomas. I am pissed that he will never have it "easy" in school. I am pissed that the school district doesn't care that he needs some extra help in certain areas. I am pissed that I am not on vacation, I am pissed that its going to rain and snow again. I am pissed that I have not gotten a good nights sleep all week, which I think is fueling my feelings of helplessness and frustration.
Today is supposed to be sunny and cold (rain tonite). I am going to get Thomas bundled up and go for a nice, long walk. This afternoon we are going out with family and watch the Cavs game. I hope Thomas goes to bed early tonite ~ the house will be quiet, I will be tired and I am hoping to get a good nights sleep. After venting in this post, taking a nice hot shower, going on a long, much needed walk, having a good time and alot of laughs this afternoon and getting a full night sleep ~ I certainly hope that this will be the end of my hell week. I haven't had days like this in a long time. Thanks for listening to me and letting me get this off of my chest. I feel better already!!! Keep your fingers crossed that everything gets ironed out with the IEP Wednesday ~ I REALLY don't want this to have to go to mediation! But, I will fight for my kids forever!!!!