It isn't always sunny

Some days, being Blondie's mom is like being steam rolled. Definitely not her fault, don't get me wrong, but I automatically move into protection mode and it isn't always pretty.

Today, two different Blondie related things happened. First was MAP testing. This is essentially a standardized test on the computer. Last fall I was crushed. I sat in a meeting to decide if she should be tested for resource and I saw that her MAP score was in the 1 percentile for reading. Folks, this isn't easy to share - it really isn't. I was deeply shocked.... Here I am a teacher, and I have a kid that I think is relatively on track - just got A's and B's with her report card, so how was this possible? Then I looked at the big picture - she was doing grade level work, although distracted/impulsive"ish"/lacking long time focus and scoring well in class despite it. So today's reading test score put her in the whopping 7th percentile. 7th. That means that out of 100 kids 93 are stronger in reading. So I'm trying to wrap my mind around this.

Yes, she can read, and is getting better. Yes, she can do regular second grade work without resource help. So, at the moment I'm just going to think that her testing skills aren't up to speed, and compartmentalize that way - because any other way is too painful to think about tonight.

After this "news" and now in a "don't mess with my kid" mood, we went to PT. Understand that we (OT, PT, and us) have wanted to try Blondie in a Saeboflex for a long time. Blondie wants it badly - she told me tonight that she wants it so her hand can work again - ouch - that isn't necessarily her reality---- ever. PT is going to the Saebo class again, and had asked if Blondie could be a volunteer. It will be tough, she'll have to miss some time with her grandparents from TX this weekend, but I thought it was a good opportunity to see if it would work. Then PT called OT, and OT later called me....not really happy. She has concerns that Blondie's hand still hasn't grown to meet the measurement requirements, that her fingers still hyperflex a lot, and while she can open her hand and let go of things she is concerned that the spring action of the Saebo, may exaserbate the hyperextension she has. She further thinks that we shouldn't use her in a class, but that if we want to be evaluated go on up to Charlotte. Um.... good point.... didn't think about those things....okay, we'll pass. So now I have two viewpoints and I'm leaning toward the OT (better safe than sorry), but understanding the PT (opportunity to try) and weighing the options.

Left hand holding bubble wand and moving around (gross motor skills).

Sometimes being the mom of a hemi kid is like blowing bubbles. You blow to make something beautiful happen, but it stretches a tad to far and POP! Today, we popped, and I have to restart my "beautiful" outlook again. Don't worry, it will be firmly in place tomorrow. Five years out, and there are still things that hit you in the face.