Oh my, it has taken me a full 24 hours to post this because I was, well I still am, EXHAUSTED. Unfortunately, if I am exhausted, poor Mylie-Moe is whatever is much much more tired and over stimulated than that. However, we made it, we survived.
We arrived on time to the hospital and got all registered. It was the usual shuffling room to room, and getting sent back to the waiting room. Poor Myles must have lined up all the farm animals in there five times only to have to put them back before she could play with them. I'm not sure why they bother putting cool toys in waiting rooms when they never leave you in them, they always shuffle you off to some small room with bad art and magazines in Spanish--luckily I can still read more Spanish than I can speak!
Then, Tricia, our evaluator, came and took Mylie for about 25 minutes and then brought her out to check in with me (at Mylie's request.) They did this two more times before Tricia finally said that I should come back with them to see if Mylie would work more with me there. She made it through two more tests and then, poor Tricia took us to a mock grocery store where patients can practice shopping with walkers, wheelchairs, etc. Mylie was in heaven, she loves play food so she loved playing there. Unfortunately, that backfired because that's all she really wanted to do for the rest of the day.
Finally, they decided to have the Psychologist come in and talk to me and let us go for an early lunch. The doctor was fascinating. He didn't seem nearly as interested in talking about Mylie's functioning as things to which he already had access like her MRIs, her seizures, etc. Ummm, really? He did ask if there was anything that I thought he should know... Oops, there was a lot, like all the stuff that wasn't already in his $%^*&! file. In his defense, he obviously hadn't read the file because he was very interested to hear that Mylie's birth mother used drugs and alcohol. I find it interesting too, however, most people assume that is an issue for Mylie when they read that her primary diagnosis is Fetal Alcohol Spectrum Disorder...
Finally, he recommended that we go eat lunch at Pizza King. He billed it as something like Gattitown. Mylie was psyched; I was worried about all of the stimulation when she was already in iffy shape. Let's just say, Pizza King ain't no Gattitown. We sat in booths which had TVs in them that you fed with quarters to make them go. There were controllers for video games but they didn't actually have any games on the TV. They did have an electric train that delivered our drinks. Mylie was pretty sure she was controlling the train with our lovely, filthy controllers until all the people around us quit ordering drinks and the train stopped running. The "games" were a cotton candy making machine and two claw games. We "played" them.
Then, we went back to the hospital where my daughter proceeded to take more tests, get more exhausted and more frustrated and feed some fish. (Not necessarily in that order.)
Even though I have given some of those assessments, I honestly can't remember how a five year old should perform on them. I know she didn't reach the basal score for a couple and they were discontinued. I know that Tricia, Mylie and I were all quite thrilled when everything was done. I also know that Mylie was a trooper, even if she didn't always seem that way. I know that she was trying because she told me at lunch that she just didn't know the answers, which broke my heart. I know that she was concentrating because her word finding fell away when she was trying to understand concepts. I also know that she was doing her best because the screaming didn't start until we got on the interstate. The screaming started on the bridge which only took about 45 minutes to cross in the opposite direction at that time of day (as opposed to about an hour and 20 minutes or more the night before) and it continued until she finally fell asleep just past Shelbyville.
I know that some of her issues presented themselves during the assessment. I wonder what the assessment will say. I wonder what it would say if they'd done the assessment over a couple of days. I wonder what it would have said if they'd attempted any form of sensory assistance between sessions or if they'd assessed her in a child-sized chair where her feet touched the floor. I hope they saw how amazing she is. I hope they noticed and noted things about Mylie beyond what was on the test. Most of all, I hope they got everything that was needed and make a report that will be useful for obtaining services, etc. because I'd rather gouge my eyeballs out with flaming spoons than put her through that again any time soon.
So, there ya' go, that was our experience. We shall see what the good doctor says about the results. Thanks so much to all of the my friends and fellow bloggers who responded here, on FB and on Twitter, it means more than you will ever know to feel not quite so alone.
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