It's days like3 the last few I have had that make me jut sit back and ponder. I feel like I have so much information and so many feelings about everything that I have been told. I have very mixed emotions bout a lot of things the last few days and I don't like that. I'm even finding it hard to know where to begin with this blog and having a hard time focusing on most things. So I guess be warned that my spelling and grammer may not at all be up to par.
I just I can start with yesterday. Bill, Elizabeth and myself went and met with the POHI Kindergarten teacher at Ken-O-Sha. First off I want to stress how much I liked this teacher and my first impression was that she was going to be a lot like Ms. Melissa, which is a huge bonus. She was very attentive, listened to my concerns, and tried to make me feel at ease. The school seems too good to be true. The kids even have swim class once a week there. The therapist are all onsite, which means that they can provide more frequent sessions, which is wonderful. In fact the speech therapist I spoke with briefly said Elizabeth would be seen at least 3 to 4 times a week instead of 3 to 5 times a month!!! This is a huge thing as far as I am concerned. I also learned how they work with getting the kids into the general educaztion classes for a certain amount of time per week depending on the support the child needs. So Elizabeth will have at least 5 hours a week or more of time with the general education class. They have computer lab once a week and the occupational therapist helps to facilitate different visual motor skills. I thought this was fantastic. Also the one major thing is that there is a nurse at the school full time!!! For me, this is like a huge weight off my shoulders. So all in all I was very impressed by the school and teacher. We just have to get all the paper work in order and get the ball rolling to get her enrolled there for next year.
Continuing with yesterday, she had an appointment with the feeding clinic. This was definately not an upper for the day. In fact I left feeling rather depressed. Since Febuary, Elizabeth has went from 17.2 kg to 16.6 kg. This may not seem like a lot, but 1 kg is equal to 2.2 lbs. She has also gone from 40.75 inches to 41.5 inches. So while she got taller, she lost weight,m which means her height to wqeight ratio has decreased and thisn is NOT a good thing for her. No, she's not malnourished or failure to thrive, but if you look at her w/o her clothes on, you realize that she doesn't have an ounce of fat on her, she is skin and bones. I can see her backbone to well and the same goes for her shoulder blades. Even her face is looking thinner to me and I see her every day. Right now I am waiting for the dieticians to call with their recommendations according to her food logs and recent hieght and weight. Also she is to get weighed once a month now and we see the dr again in August. They have also added her name to a list of kiddos to be seen in their outpatient clinic to try and upgrade her textures, so we can try to get a step up from smooth purees. Since leaving the appointment I have had a lot of questions come to mind that I really want answers to. Thankfully we see her G.I. dr on June 29th and I think they are the ones that I really need to be asking these questions of, so til then I guess I will just keep coming up with things to ask them, to hopefully get to the bottom of some of her volume issues.
Now on to today and her IEP meeting. Some things I was told today, I kind of already knew, but seeing it in print and having it stare you in the face is a lot harder to take. One huge surprise in a way to me was that they feel she needs a social worker to work with her. In their words, "Elizabeth enjoys individualized attention from adults and often engages in inappropriate attention-seeking behaviors in order to draw adult attention (such as doing the opposite of what she is told to do and looking at an adult for a response). Elizabeth appears to enjoy the company of adults more than children, and often asks to "work with" or "play with" adults during free choice rather than interacting with her peers. Elizabeth's oppositional behavior may impact her ability to form and maintain friendships in kindergarten as well as to be successful in classroom activities involving group work." Because of this, goals have been written for her to have a social worker teach her how to interact with her peers, ask her peers to play with her and also learn to take turns and listen.
For me, this was a very hard thing to hear. I have actually gotten use to the speech, occupational, and physical therapy goals and objectives. In fact it seems second nature to me now that E needs these services. I just never thought she would need to learn how to interact with her peers. She is very social and outgoing and becauase of her medical past has had to rely soley on adults for interaction and play. I never thought this would impact her ability to play with other children. Like I said, I honestly don't even know how to react to this or feel about it. Yes, I know she is defiant and have said for some time I need help with it, and still I have no real help. I'm just totaly lost on this one.
As others have said, I need to look at hown far she has come. Honestly i do look at that and I know she has made HUGE strides and has had remarkable progress. Yes, I know she has the vocabulary of an adult (no, not in a bad way like foul language) and will say we go to the pharmacy to get her scripts, unlike most kids that say we are going to the store to get medicine, however you have to be able to understand the huge vocabulary she has to even know she has it. I guess in the long run, I'm really hoping that next year in Ken-O-Sha will be the turning point for her and things will fall into place for her with all the added services she will receive. Like I said, it's just hard to see what you fear the most staring at you in print.
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