4.3.15

I KNEW IT WOULD BE BAD WHEN HER MAGIC BROKE

After Lauren was in the hospital for her second surgery, she went down for a post op xray and came back with a magic wand.


That wand became her constant companion before she even knew what it was.


Now that she has started to love Cinderella and her Beep-Bop-Boo (aka Fairy Godmother), she calls the wand her magic. And last week as we were driving to the hospital for testing, it broke.

Because Lauren was on ECMO for an extended period of time (longer than just the surgery), she goes for testing every 18 months. Last time, it shook me and this time was no different. Lauren got knocked back developmentally and physically with her time in the hospital and she made great gains before her first session of testing, but her tests just showed that she was still behind. But I knew she was still behind. This time, Lauren is out of all of the developmental programs because she has caught up, but her tests on Wednesday won't show that. The way that the day goes is that she has to sit for an hour and answer a barrage of questions for a speech and language assessment and then go straight into an hour of testing for fine motor skills with another half an hour for gross motor skills. Simple math: Two and a half hours. Now add in Lauren and you've got a recipe for disaster. She did really well for the first 35 minutes of the speech assessment and then she spotted a teddy bear and it was all over. All she wanted to do was take the bear blanket and tuck the teddy bear in so he could sleep and then she wanted to feed it. There was no bringing her back from that. She wanted to play and there was no stopping her. When she went into the fine motor assessment, her frustration level was so high that she didn't show her full abilities. When Lauren feels like she is being challenged or being told what to do, if you use a louder voice and stay standing up, there is no way that she is going change her mind and do what you want. But if you get down to her level and use a soft, kind voice, usually she will change her tune and be on your side. Well, that wasn't the way that the testing woman approached it at all. So the stress level continued to go up and Lauren fell further and further apart while I did all I could to hold myself from following her lead into a sobbing mess.

And at the end of all of that I was told that, while they don't have any concerns, the written report will show her as being significantly lower than she is just because she stopped wanting to participate in the tests which were not set up for a three year old.

I walked out of there and had a good cry. Tests like that are so hard because, instead of showing what your child is capable of, they often highlight what they are unable to do. And no one wants to hear that about their child.

Lauren is funny and kind. She is active, charming and vibrant. She loves to be a helper and run as fast as she can. She is polite, caring and loving. Her imagination is always going but she loves to sit down for a book. She loves to feel beautiful and smart and capable and she is all of these things. For her testing, the only words I heard were difficult and lack of attention. But as a teacher, having seen kids just like mine, I knew that if I could take her for a quick breath of fresh air or let her run around for a few minutes, she would be able to come back and do so much more. No, my kid can't sit down and focus on only the tasks given to her for two and a half hours, but neither can I.

Are there still things that she can improve on? Sure. But for this time where she doesn't have therapy appointments every other week, I'm just going to let her be a kid. I'm not going to sit down with her and work on lacing beads onto string just for the sake of lacing. When she wants to lace, she will lace, but for now, she wants to run and I, for one, won't be stopping her any time soon.










PS - If anyone knows where they sell wands like that, I would love to get Lauren another magic to replace the one that broke. She still has lots of magic that she needs to do.

3 comments:

  1. Shirley N.3/4/15, 3:56 PM

    Amanda, I'm so glad that you now have the perspective to step back and realize that the test results reflect the methods used rather than Lauren's abilities! Huge progress! Letting your lovely daughter be a child (well, duh, health professionals) is the very best thing you can do. And I think you'll find a replacement for The Magic at any local party supply store (or dollar store), probably in the "loot bag" section. Blessings to you, Matt and your babes. Shirley N.

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  2. Amanda, I think Lauren is awesome! I think it is cruel that they do tests on 3 year olds that are not geared for 3 year olds. It just doesn't make sense. Letting Lauren be herself sounds like the way to go. I'm sure once she reaches the age which matches how they insist on giving tests - she'll outsmart them all!

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  3. I don't know if this helps, but I can tell (from your blog and from the "said around here" quotes that Lauren is WAY ahead of Rosie, and they're about the same age. And I'm not even worried about Rosie because I can just tell she'll catch up eventually. Her speech is progressing, it's just happening a bit later than it's "supposed" to. Besides, she can't talk very well because she's too busy singing. And she's WAY to focused on what she wants to do to listen to any advice on how to do it better. Also, she thinks diapers are quite acceptable for a three-year-old, thanks. I think she and Lauren would get along nicely. I think that me and anyone testing Rosie's abilities without just letting her play with the teddy bear in front of her would NOT get a long at all.

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