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Ok, I can breathe again.

The big yucky meeting is over. Yesterday I met with the MET (multidisciplinary evaluation team) to go over the results of Raya's evaluations, which were to determine whether or not she will qualify for an IEP going into kindergarten. To make a long story short and avoid the annoying suspense that I've been living with for the last 2 weeks, I will just come right out and say that Raya WILL be on an IEP going into kindergarten. (cue HUGE sigh of relief)

I did not know until the end of the meeting that she was going to have an IEP. First, they had to go over all the results of the evaluations with me. Aside from the very long days in between the evaluation and the results meeting, that is the most nerve-wracking part. On one hand, you want to hear good things about how your child is doing, but on the other hand, you want them to score low enough to qualify for the services you know they need. In past meetings, I've cringed a bit when she has been within the average range on things. The results of these school evaluations have never been a very accurate picture of Raya from a social, emotional, and behavioral standpoint. This time, it was music to my ears to hear the results of her academic and cognitive evaluations. She is one smart little cookie. When the school psychologist was doing the academic & cognitive evals a couple weeks ago, she kept telling me, "She is doing great! I have 2nd graders who can't even do some of these math problems or answer some of these questions!" I am relieved to know that she does have some natural ability with the academic side because I anticipate that there may be difficulties with her attention span and with getting her to do homework. Much credit goes to her phenomenal preschool teacher and aide too though. They are wonderful and have done so much for Raya to get her where she is.

The part I did not like hearing was how vastly different the school & home evaluations were in the adaptive behavior and social areas. I totally understand that her teacher does not see most (or any) of the problem behaviors we see outside of school, but it really frustrates me that the evaluation does not take into account the fact that she is only with her teacher for 9 hours a week and she is with me for the other 159 hours of the week. That is an extremely inaccurate representation of her adaptive level of functioning. I don't know if the teacher's booklet had the exact same questions that I had, but some of the questions on the evaluation were things that would never apply to school, like "Decides what clothing to wear without help". They don't do that at school, so how would the teacher know? The majority of the questions were things that Raya reacts very differently to in a school setting vs in any other setting. She is at school during her happiest hours of the day when she feels good physically, and she LOVES school. At school, they don't have to make her do things she doesn't like to do. Picking up toys at school is fun because everybody helps. Putting away her own toys at home is hard because she has to do it by herself. At school, even the tasks that are done independently are closely supervised, and the other 20 kids in her class are doing them independently too. She holds herself together well at school and in the mornings, and then kind of falls apart in the afternoon & evening, so it was frustrating to know that those things were not taken into account. I thought maybe they'd just average the teacher's scores with mine or something but they did not. There was an average of about a 30 point difference between the teacher's scores and mine and it does not appear that mine counted for anything at all. Annoying, but I expected it based on conversations with the teacher.

However, thankfully, the team determined that she does qualify for an IEP under the "Other Health Impairment" category (OHI). Had she not qualified for OHI, we would have done a 504 plan instead. I had convinced myself that I could be okay with that as long as the needs I feel she has would be met, but I am so incredibly relieved that they decided on OHI. I can't really put into words why I felt so strongly about an IEP vs a 504, but I did/do and I'm really, really glad we're going this route. She won't be due for a re-evaluation until the end of 2nd grade so this will get her off to a strong start in elementary school.

Now comes the fun part. Gotta write the IEP and get everybody to agree on things. I have to say that after yesterday's meeting (where there were a couple of different people in attendance than the last one) I am feeling MUCH better about the direction we're going in and I really believe that everybody will be able to come to agreement about what's best for Raya and also do-able for the school. And I'd be lying if I said I wasn't super grateful that 2 of my other kids will still be there because if there's an emergency, they can be there for her, if in no other capacity than to hold her hand while she waits for me.

The school year is rapidly coming to an end and it's bittersweet for me. My oldest is finishing up her last couple weeks of elementary school and will officially be a middle schooler, and Raya is graduating from preschool and moving on to elementary school. Both make me want to smile and cry at the same time, for different reasons. I remember in the early days of Raya's tube feeding adventures that I thought she'd only need the tube for a couple weeks. Then a couple months. Then a couple years, and when she was 2 or 3, I told myself that she'd probably be off the tube by the time she went to kindergarten. Oh, how I would love to be able to say that but there are some things in life that are just beyond our control. Instead, she is going to start spreading awareness and educating the new people in her life about life with a feeding tube and showing them that nothing holds her back from doing what she wants to do. ♥


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