Skip to main content

IEP meeting

I told Donny on Sunday afternoon that I just wanted to go to bed and wake up in a week because of everything that was on the schedule for this week. It's been busy.

We had Raya's IEP meeting on Wednesday. For all the awful IEP stories I hear from friends, I am extremely grateful for how well it went. I can't say enough wonderful things about Raya's teacher this year. She has been so great about being careful to keep Raya safe with her food allergies and just from things she said in the meeting, I can tell that she is very aware of Raya's needs and is proactive in working on them. There are things that I would like to have seen written into her IEP but we weren't able to write goals for them because they didn't fit into the 3 areas that Raya qualified in. Even so, her teacher explained to me the things they do (or can do) to still incorporate those things into her preschool experience so they're still being worked on. She has also emailed me more than once to let me know about an activity she was planning for the class and make sure that whatever it was would be okay with Raya's allergies. Last night she emailed me the recipe for the play dough she's planning on making to make sure it was safe for her. See what I mean?! She's amazing! It's a good feeling to be able to take Raya to school and not worry about what she's being exposed to that she shouldn't be. The whole staff at her school this year has been great to work with. 

We came out of the meeting with some goals that I feel like are reasonable and will be good for Raya. It wasn't until after we left (meaning the last 2 days or so) that I've started to process more fully what her goals are and the fact that they do actually make me a little bit sad. I think IEP meetings (and others like that) are a little different for me than they are for a lot of my friends. Most of the time, I look at Raya and think, is all this therapy & preschool and avoidance of the majority of foods really necessary? Then inevitably, something will happen and I'll realize that we definitely are not wasting our time and she does need these things that we're doing with her. Sometimes it's seeing the way other kids her age interact with each other or watching other kids her age do certain things, and other times it's seeing a funky rash pop up on her face (or elsewhere) a few days after she's eaten a new food a few times. Whatever it is, I'm grateful for gentle reminders that I'm not crazy & I'm not making all this up or wasting my time.

One of those little moments came before our meeting even started. Raya's teacher and I were sitting down at the table in Raya's classroom. Her teacher asked her, "Raya, what would you like to do? You can play on the computer or play with toys." Raya just stood and stared at her with a smile on her face. We were in a room she's completely comfortable with, the question was coming from a person she's completely comfortable with, it was a POSITIVE question, she was in a good mood, she was not under duress or frustrated, and yet she would not or could not answer the question. The question was rephrased to her by a couple different people (including me) 3 or 4 times, with adequate time to respond in between, and she still said nothing. Eventually she went to the toys and started playing with the train set but she never actually verbalized what she wanted to do or responded to her teacher's question. 

I was a little frustrated when I was told that they couldn't really make that a goal, but we did agree that verbalizing her needs & wants is something she should be able to do at this point, especially in the area of adaptive/self-care skills. We were able to work it into a couple of her other goals by adding that she would initiate whatever the goals were. For example, one of her goals has to do with using the toilet at school and initiating asking her teacher if she can go. Currently, she would go all day without asking to go to the bathroom and if you ask her if she needs to go, she will tell you no 9 times out of 10. That goal might last us a while. :) Along the same lines, I also asked them to make a note that when it's snack time, Raya needs someone to prompt her to ask for help opening her water bottle or else she will not drink water. The speech therapist had said that she doesn't give the kids their snack & drink until they ask for it, and for a child who actually wants to eat & drink that may be fine, but I had to remind them again that they can NOT do that with Raya or she will just choose not to drink water. I'm not sure if that will end up in the IEP or not (probably not) but it needed to be said. I get the impression that the speech therapist has never worked with a child that has Raya's degree of feeding delays. Ever. Thankfully she asks me questions and seems to listen when I answer them.

Overall the meeting went well and I don't anticipate any surprises when I get my copy of the IEP in the mail. Fingers crossed that that's the case. My fear going into meetings like that is always that they're going to tell me she's doing great and they're kicking her out so as long as we've got things to write goals for that will keep her in the program, I'm happy. She loves school and for reasons that I can't always put into words, she NEEDS to be there, so I'm grateful that the program exists & that she has such a great teacher & staff to work with her.

She passed out in the car on the way home with her "cape" on that she insisted on wearing to the meeting. 
(then she woke up later all disoriented & had a huge meltdown)

Comments

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …