Yesterday Finn had a follow up with Neurology. I really didn't feel like going. I almost cancelled. Finn hasn't appeared to be doing any suspicious movements or behaviors that I wanted to discuss with her. But I went mostly bc I wanted to see how much Finn weighed.... (28.8lbs! He's gained over a pound and a half since his gtube placement! And he's not even taking in as much as the "professionals" want him to!)
Anyway, our neurologist was really happy with the way Finn looked/acted/felt. She was so happy to hear about the cognitive and speech progress Finn has had since she last saw him 5 months ago. I was flying high. Feeling good. Then she reminded me that she wanted to reevaluate Finn this visit. I totally forgot. I didn't plan for a 2 hour doc appt. It's getting to be snack time for Finn and I didn't bring food....but I told her since Finn is happy now, let's just start the evaluation and if he gets mad we will just stop and do the rest another time.
In walks this "behavior therapist". And let me just preface this story with, I know she is just doing her job.... going by all the protocols and standards blah blah blah. But with that said this stupid evaluation is worthless and stupid. And I'm pissed I wasted my time and Finn's. But I was curious to see how far Finn has come since the last time he was tested at 11 months. And bc every time I ask a specialist in our little CP world about Finn's cognitive age they always tell me "oh we don't like to put those kind of labels on our kids..." ok fine. But I can't help that I'm curious. I know his gross and fine motor are bad...that is obvious. ..but Finn is so smart and funny that I KNOW he's way stronger cognitively.
So to satisfy my curiosity we do the evaluation. She administered the Bayley infant development test. Which is part her interacting with Finn and then a bunch of questions I have to fill out that state whether Finn can perform certain tasks or not. Well keep in mind it's now 4:00 pm, Finn just sat thru a 1 hour doc appt, he had school that morning, hasn't napped, and is now getting hungry....so this "behavior therapist" busts out all these toys and the goal is to see if Finn can track, grasp, hold, play with these objects. Well the only toys this woman has in her suitcase are dumb baby toys like a rattle and a ball. Finn isn't interested in playing with those things. So he makes no attempt to try to play with them. And I tell her that. I'm like those are too infantile for him. He's 4 years old...not 4 months. But it's the only stuff she has...so after about 20 mins Finn gets mad. He's had enough. So she tries to finish the test real quick based on what I tell her Finn can do at home. Then she leaves to score the test.
She comes back looking like she's so proud and that she's going to delivery good news to me. She has told me that Finn has improved in all areas since he was tested when he was 11 months old (no shit) she tells me that his communication skills is that of a 14 month old, receptive communication is 11 month old, and cognitive skills are a 5 month old. Before she can do the fine and gross motor scores I tell her to stop right there. I go on to tell her that these scores are incorrect and bullshit. The last time Finn was tested for communication skills, his receptive communication was 18 months! And this was when he was 2 years old. And to tell me that cognitively Finn is a 5 month old?? Are you kidding me? I flat out tell her that her scores are wrong. (I don't believe I acted like I was in denial of these results (maybe partly so))...but I ask how she came to these conclusions. And she said she can only score what she saw Finn do today. So bc he didn't reach out and want to play with that stupid rattle he was penalized. I said that they need to figure out a way to adapt this test for kids like Finn who have difficulty moving their body but understand what is being asked of them. She tells me this particular test can never be adapted bc this test is compared to "typical" children his age. EXCUSE ME?? I say to her "Why is Finn even taking this evaluation?" She responds by telling me to see how delayed developmentally he is and then to advise on how to get him the help he needs. ARE YOU SERIOUS? I tell her I don't need a test to tell me how delayed he is! And then I tell her that this was ridiculous, she wasted our time and hers, that Finn has an excellent team working with him, that I didnt need her help, and that anyone who spent more than 40 minutes with Finn could tell her he would test higher than what she "concluded".
I am not going to let that test hurt my heart. I know what Finn is capable of. But it pisses me off that they felt it was necessary to do that test. I know he's very delayed...his doctors know he's very delayed....so how the hell does this test help??? The only thing it accomplished was making me feel bad.
