Epiphanies, plural

Lillian likes to lay like this when I'm reading to her at night.  The doctor says that her hypotonia is no longer detectable, but she's still really floppy and it's hard to tell if she does stuff like this because she can, or because it takes too much core strength to sit upright.

I don't know what I was thinking or hoping, but I think deep down, I thought that because she had grown out of the hypotonia, she might have grown out of the ADHD and maybe picked up some number sense over the summer.  But in the first few weeks of school, she's shown that this is not the case.  In considering my feelings about having a child with learning disabilities, I've realized a few things.

1. I was thinking about how Lillian could really use a full-time math tutor.  Someone to sit with her every night and do math homework; who was good at math and good with kids and could really get Lillian and explain things to her.  I starting thinking about how much that would cost and how much I would have to work to be able to pay for it when I realized that I do that.  Like, that's what a mom does- whatever it takes.   Your kid needs extra math help?  You're a math tutor.  Your kid needs a special diet? You're a chef.  Your kid needs a soft place to land?  You're a pillow.  It's pretty obvious- of course I'm going to be there for my kids, but it was just a moment of clarity that *I* could help solve this problem.

2.  I loved school.  I loved going and taking tests and learning everything.  Test taking is very easy for me; I could probably take a multiple choice test on a subject that I know nothing about and get a decent grade because I have a sense about what correct answers look like.  I liked to think that I was kind to everyone and respected all the kids regardless of scholastic aptitude, but I'm realizing that I looked down on people who weren't as smart as me.  I thought I was better than them.  Now that I have Lillian, I realize that she works way harder than I ever did at math.  She struggles to complete worksheets in class and then has to finish them at home on top of the homework, plus she goes to extra tutoring in the resource room, plus I practice with her every day and on weekends.  And she does it with minimal complaints.

When I got to AP Physics in high school, it was hard for me, and instead of sticking it out, I arranged with UCSB (to which I had already been accepted) to drop out with an F on my transcripts.  I had no coping skills built up to tackle a difficult subject because no subject had been difficult before.  For a long time, I congratulated myself on my clever solution to my problem, but I realize now that it was a total cop out.

3.  I need to be more sensitive about bragging about my kids.  Nora is very smart, and sometimes I get carried away telling people about it.  However, it's totally the pot calling the kettle black because when people brag to me about their Lillian-aged kids, I want to punch them in the face... or just cry.  That's great for you that your 8-year old has read all 7 of the Harry Potter books (Lillian can barely read Magic Treehouse and that's only if I'm sitting next to her to remind her of where she is when she gets distracted) but that doesn't make your child better, or mean that you are a better parent than me.  I'm sure this is just me projecting my insecurities, but I don't want to make other parents feel bad because their 5-year old can't count by 3's (which Nora likes to show off).  IT'S NOTHING I DID, she's just like that.  Its also something I need to remind myself- My parenting can't and shouldn't be measured by the achievements of my children.

Keeping Life at a 3

"Ambulation" is the medical term for walking.  After surgery, it is important to ambulate at least once on the day of surgery (usually) and then 3-4 times a day every day after that.    If you don't walk, your cells won't get the oxygen they need for healing; your lungs won't be expanding all the way, so fluid could collect in the bases causing pneumonia; and the blood could pool in your legs, giving you a blood clot that could break off and give you a heart attack or stroke; and your bowels won't "wake up" fast enough, possibly giving you an ileus. Ambulating patients drives most of what I do as a nurse.  I need to keep you rested, pain-medicated, cleaned up, and happy enough to get those walks in.

I try to keep my patients at a "3" on a 0-to-10 pain scale.  No pain is unrealistic because 1. you just had surgery and 2. if I give you enough pain medication to erase your pain, you will also stop breathing.  But a 3 you can work through and get your walk in.

Last night, I was reading my first How-To parenting book: Smart But Scattered.  It's all about "executive skills" and how to teach them to your child.  Executive skills are skills needed to execute tasks and be successful.  Lillian has problems with sustained attention, task initiation, and time management.  (I don't know where she got that from: my assessment said my weaknesses were in sustained attention, organization, and time management.)

Anyway, one of the Principles for Improving Executive Skills is to "Modify tasks to match your child's capacity to exert effort."  The authors suggest modifying tasks so that they feel like a "3" on a 1-to-10 effort scale.  This can be accomplished by breaking down the task into smaller pieces (clean just this room, instead of the whole house), decreasing the time spent on the task (clean for 5 minutes instead of 20), or increasing the reward so the task feels like less work.

I've been trying to force Lillian to sit for 3 hours and get all her homework done (because she doesn't do her work in school, we get to do school work AND homework), when for her, that feels like a 10 on the effort scale.  This is why it's not working.  Duh, Amanda!  This is why she flops around and can't concentrate and "forgets" how to do math even though we just went over it 10 times! I don't make my patients ambulate when they have a 10 on the pain scale... I give them morphine and then come back in 30 minutes.

I'm only about 100 pages into the book, so I don't know all the tips and tricks, but I'll keep you posted on how we do.