Tuesday, June 16, 2015

Distraction is in the details

Last night, at 11:05 p.m., I was searching our kitchen's junk drawer for a Sharpie. I found a couple of black ones but I needed the red kind so I could write "Fireman Max" on his new bottle of body wash.

OK, let's dissect that:

1) Yes, I write "Fireman Max" on every bottle of body wash and shampoo Max uses, per his request. It's not that he's worried that Dave will use up his precious Orange Petalooza body wash, it's that he likes seeing his name in print.
2) Yes, I try to use his favorite color.
3) Yes, I make sure to use permanent marker so it won't wash off.
4) Yes, this is the sort of thing I do at 11:00 at night as Dave binge watches the latest Orange is the New Black episodes.

Detail-oriented: that's me. Wants to please her kids: that's me, too. Seriously needs to work on relaxing more: OH YES PLEASE, RELAXATION FAIRY GODMOTHER, WHERE ARE YOU?

And then there's this: Sometimes, I immerse myself in chores and minutia so I can avoid thinking about the biggie stuff. In this case, that would be the results of Max's recent school evaluations. Three, to be exact: Speech-Language, Educational and Psychological. "Heartbroken" does not begin to describe how I felt after reading them, and I've procrastinated sharing here because they have so shaken me. That's pretty much all I can stand to write until I further wrestle phrases such as "His ability to be understood is very limited" to the ground.

Meanwhile, there are bottles of body wash to label. I settled for a black Sharpie. I wrote "Fireman Max" on his toothbrush handle, too, for good measure. Then I headed to the living room to catch a bit of Bed Bugs and Beyond, and for a little while longer I didn't worry.


  1. Hugs Ellen. I know those test results can be tough. Mine have always been average/above average for the most part but still seeing processing as 10% this fall was rough. I know it is actually a good thing because it proves I need extra time. But ACT people still don't listen because my overall IQ is average-thanks to a high subscore that puts me in 1% of the population(my verbal comprehension was 99.7%).

  2. Hugs. Every special needs Mommy in the world knows how this feels.

  3. Remember, test scores are a tool to pry what you need out of the system, just like any other sort of evaluation. I actually busted out laughing when ds got an assessment that said his fine motor ability was "below first percentile". School STILL thinks I'm premature to want to be discussing assistive tech for writing.

  4. Those evaluations are just opinions keep them in the back of your mind but don't let it limit Max.

  5. Think about how he has exceeded all expectations thus far. It's not about tests or predictions, but how he improves, day by day. Not to mention the way Max relishes life and lives with such joy. Hugs!!!

  6. Hugs. It's not easy to hear evaluation results. I remember when a doctor first told me that my son would never attend university. Of course the doctor was right and I knew she was right, but it was still like a punch to the gut. I was fairly miserable and down about it until I had a revelatory conversation with an acquaintance whose child was deaf. When she said, "Yes, it sucks and it's okay to say that it sucks," that really hit home with me. I'm now at peace with our situation, thinking, yes, it sucks, but we are going to make the best of it. And as difficult as things can get, we have many joyous moments, too.

  7. Evaluations suck. As hard as everyone is working, and in spite of all the wonderful progress we celebrate daily, they stand as a reminder of the distance left to go. When we get disappointing results now I think back to early evaluations...like being told our 4 year old had the receptive language skills of a 3 month old (um, yes, none!), and now in 4th grade he is reading Magic Treehouse books and doing quite well in science. Sometimes our kids live in the margins of the evaluations...not in the neat round bubbles the rest of the world is expected to wiggle in to. It just means the path for our kids is limitless, or, better yet "Unwritten" (p.s. Natasha Bedingfield's song is my anthem for days like this!) I wish you peace and grace until the next great Fireman Max accomplishment comes along to make this eval a distant memory!

  8. My peers' fortes are in academic areas, but mine is critical thinking. Apparently, I can't solve a math problem to save my life, but I can carry out reasonable thought and judgment. I scored 96% in critical thinking, 74% in math, and 95% in reading comprehension.

    1. Anna....
      You scored 95% in reading comprehension?! Good for you!! Thanks to my premature short term memory loss {I am 31 years old and have struggled with this learning disability my entire Life} reading comprehension was/is my worst subject!! Well, next to math.... ;)
      Love you later, Raelyn

  9. (Hugs) evaluation results are always hard to receive. But when you think about it max has almost always exceeded expectations.

  10. Oh, Ellen...I'm so sorry you're feeling devastated by that evaluation. I don't know what it's like to be the parent of a child with special needs, but as an adult with C.P., I have been struggling with my own disappoints/fears for the future/moments where it gets hard lately. So, even though I'm not a mom, please know that you're not alone.

    Remember that evaluations may serve a purpose, but they are not all that matters. Determination (and so many other factors) also plays a role. It's very clear that you, Dave, and Fireman Max are all incredibly determined. That determination has been part of what has already helped Max to achieve so many things. I have no doubt that Max will continue to make progress, even if it's not the type of progress that evaluations take into account. He's done and his doing so many wonderful things.

    Keep moving forward, Mama (and know that it is okay to have moments where you just want to stress eat/cry/be upset when it gets tough, too). No single evaluation can sum up everything about your child, and (at least in my experience) they tend to lean toward the negative moreso than the postive. You're doing the right things. I don't mean to downplay the sadness that the evaluation brought with it, but I want to assure you that this blog is a collection of Max's triumps as well. Those count just as much (if not more because they give hope and hope is powerful).

    People from all around the world (I'm in Canada) are cheering Firemax Max on, celebrating his victories, and wishing they could send you all giant hugs when the hard times come. If you take nothing else away from this comment, know that. We're all in your corner and we believe in you and Max.

  11. Ellen....
    Max is Beautifully Unique. He was fearfully and wonderfully made by a loving God who has plans for his Life.... Despite what some school evaluation test results declares!! ;-D
    Hang in there!! ;)
    Love you later, Raelyn


Thanks for sharing!

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