The short version of this post is that Raya had her preschool evaluation today, it totally sucked and I will be amazed if they scored her so that she qualifies for preschool, we had a lovely visit with the nurse practitioner at her annual cerebral palsy screening clinic, and the ice cream they gave us on our way out of the clinic was the high point of my day and Raya's. If you want more details, here's the long version. It's really, really long, it's not pretty and I'm not asking for sympathy or pity, I'm just documenting our life and keeping it real.
Back when Raya was diagnosed with cerebral palsy and subsequently approved for therapy services through DDD, I breathed a huge sigh of relief. That diagnosis meant that she qualified to receive the therapy services, supplemental insurance, and respite care that we knew would provide her with better quality of life and allow her to reach her maximum developmental potential. I did not realize at the time, however, that she would still have to be evaluated to qualify to transition from the state's early intervention program to special needs preschool. In the beginning, everyone referred to "when Raya transitions to preschool" and never mentioned that it was IF, not WHEN. I don't remember when it was first brought up that she'd have to qualify but I've had anxiety about it ever since.
Finally a couple months ago, we got the meeting scheduled with the district we're currently living in the boundaries for, which we'll call district A. Then we decided to move back to district B where the other kids are attending school.
As it has worked out, our move date ended up being 2 days after our scheduled eval date. I called our support coordinator last week and told her when we were moving and asked her what we should do. She emailed me back and said that district B said to go ahead and do the eval with district A since it was already scheduled and B couldn't eval her until late October. I assumed she had talked to both districts but found out at the evaluation today that district A had no idea that we were moving at all, much less this week. The speech pathologist made no efforts to hide the fact that she was mad that we had done the evaluation. She said she understood why our SC did it this way but flat out told me that if they'd known, they never would have done the evaluation. That made me feel like crap. It wasn't my fault but now I worry that it will affect the results.
I'm getting ahead of myself. So this morning, Raya was a mess. She was stubborn, crabby, crying over little things, fighting me on getting dressed, fighting me on putting her shoes on, and we had a wrestling match trying to get her buckled into her carseat. For once in her little life, I was thrilled to see her acting that way and thought she'd do a great job showing the evaluators all the reasons why she needs preschool. When we sat down in the school office to wait (for 20+ minutes) for her appointment, she was much more calm but still crabby. Had the school psychologist been the one to come fetch us from the office, she would have seen Raya like this:
But no, someone else sent us back to the room for the evaluation. When we walked in, it was like someone cast a spell on her. She suddenly became agreeable, happy, cooperative, and communicative. I knew as soon as we walked in that it wasn't going to go well. To sum it up, she was the absolute best version of herself through the whole evaluation. That may sound like a good thing but when they need to see why she needs to have preschool, it's bad. The first thing they said to me was, "So tell us about Raya." I honestly didn't know where to start. How do you summarize almost 3 years of medical problems, developmental issues, therapies, and concerns? I had expected it to be a somewhat structured assessment. What it was had no semblance of structure. The two therapists in attendance and the school psychologist all asked me a few questions in between watching Raya play. The occupational therapist was gone today. When they told me that, I told them that that was really unfortunate because Raya's biggest deficits are things that we work on with the occupational therapists that she's been seeing twice a week for the last 19-ish months.
The speech pathologist asked me questions about her communication and I tried to emphasize the fact that even though Raya HAS had a language explosion recently and has a lot of words, it doesn't mean that she is capable of expressing herself. I explained that unless Raya is at her absolute most calm and collected state (which is not often) she can't find the words she needs and throws fits and cries. She asked me more questions and I answered them the best that I could.
It's harder than you'd think to answer questions about your child. On one hand, as the proud parent, you want everyone to know how wonderful your child is and how smart they are. On the other hand, the purpose of these meetings is so that they can see what deficits there are and if the deficits aren't significant enough, they won't qualify for the services they're being evaluated for. What it boils down to is that if you say the wrong thing, your child might not get what they need. It's scary. I've always been told that if the child isn't doing whatever they ask you 100% of the time, then the answer is no, and that's what I tried to stick to today. It's just hard when some of the questions aren't a clear cut yes or no answer. I know Raya's language skills are good, especially when she's in such an angelic mood as she was during her evaluation, but other than an hour or two a day, she's difficult to understand. When she's tired, excited, talking fast, mad, fatigued, or distracted (which makes up about 90% of the time), her letter sounds get soft, she slurs words together, and she's difficult to understand. Whether or not the speech pathologist heard & understood me correctly when I explained that is yet to be seen.
The physical therapist sat on the floor by Raya while she played with toys. She completely ignored the PT, which made me smile on the inside. (That was about the only thing that made me smile on the inside.) There were exciting new toys to play with so why would she pay attention to some adult asking her questions and telling her to do things. She always W sits (that position that some little kids do that hurts your knees to look at it) so the PT said, "Raya, fix your legs." After she'd said it 2-3 times, she asked me what verbal cue I usually give her to get her to fix her legs. I chuckled and said, "I tell her to fix her legs. She just doesn't do it. If Raya doesn't want to do something, she's not going to do it." And that's the truth. The PT took her outside for a few minutes while the speech therapist went over the results of her assessment and the psychologist asked me more questions. The speech therapist told me that she's scoring around 100 and in order to qualify on speech, she'd have to be at 76 or below. I knew she wouldn't qualify on speech alone, so that wasn't a surprise. She did say that she would put Raya's articulation deficits in the report but honestly I don't think it will matter.
The psychologist's role in the evaluation was to observe social, emotional and behavioral components and ask me questions from a standardized testing instrument. That was the only part of the evaluation that I felt somewhat good about because Raya has some definite issues with those areas. The unfortunate thing was that the SLP and PT's portions of it took up so much time that I don't feel like I got a chance to give the psychologist an accurate picture of how Raya really is. The child that was in that room was NOT my usual Raya and I hope I said that enough times for them to get it. Right when I felt like we were going to dive into the nitty gritty of Raya's sensory issues that I think will influence her ability to learn when she gets into a classroom setting, the evaluation was over. The SLP said, "We'll need to have another meeting to go over the results." I said, "Um, you are aware that we're moving out of the district, right?" She had been walking towards a shelf to put a toy away and when I said that, she stopped dead in her tracks, turned around and looked at me and said, "No, nobody told us that." She was clearly irritated. I explained the situation and why we had gone ahead with the evaluation and that was when she said, "Well, I can understand why she did it that way but if we had known, we never would have done this evaluation." Her entire demeanor changed as soon as the words "we're moving" came out of my mouth. I had assumed that they knew that already. The tone in the room changed at that point. Two of the ladies were still nice, but they all shot looks to each other that didn't require words for me to understand how they were feeling.
And just like that, it was over. Everybody closed their notebooks and the psychologist escorted us out of the room. A feeling of slight panic set in when I realized they were done asking me questions because we barely scratched the surface of what the real issues are. In a last-ditch effort to get my point across, I said, "Just so you know, the girl you've seen for the last 45 minutes is not who she really is. This was not the typical Raya. Every activity she's done for all of you are things that she initiated. If she initiates the activity, she's fine but the second you try to get her to do something she doesn't want to do, she's a different kid. This was not the real Raya." They all smiled and nodded so who knows what they were thinking. As we walked out, Raya didn't want to hold my hand. She wanted me to carry her so she stood in front of me and held her hands up and whimpered at me. I told her I wasn't carrying her and that she needed to walk like a big girl. She kept doing it all the way out of the library and halfway down the sidewalk. Finally I picked her up because I could feel my emotions coming to the surface and just wanted to get out of there. As we walked through the gate, I said to the psychologist, "Why don't they ever do what you need them to do when you need them to do it?" Once the gate closed, I couldn't hold back the tears anymore. It's a horrible feeling to feel like you've probably just cost your child the help that she needs. I won't know anything for sure until the next meeting on October 25th, but I'm expecting them to say that she doesn't qualify and that's not just me being pessimistic. Anyone who had been in that room would understand why I'm afraid that that's what the outcome will be.
I'd like to say that I dabbed my eyes, blew my nose and pulled myself together to go about the rest of my day but the truth is far from that. I cried my ugly cry all the way home. I gave Raya her morning doses of meds, plopped her on the couch, and turned on Backyardigans for her while I laid down on my bed for a while. I've been anticipating that evaluation for over a year and I feel like I completely failed her. I don't feel like I gave them a clear enough picture of the difficulties she has and I don't feel like they saw enough to make a good judgement about her. I should have prepared differently. Things I should have said have been running through my mind all afternoon. If they could only see what she's like outside of that fun little room full of new, exciting toys, they would see why I'm even going to the effort of pursuing preschool at all.
So that's the first part of our incredibly long & emotionally exhausting day. Part 2 will follow...
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