Tuesday, February 16, 2016

developmental assessments and not being SB mom of the year

My Eliza doll is 6 months old.
I know, it's certifiable crazy talk. 

And other than celebrating half birthdays and taking adorable photos and weeping over the tiny wardrobe that she's growing out of, this age milestone does come with one more thing. One dreaded, icky, thing. I thought I was prepared for it. I thought I was ready. I had my feelings prepped and my questions at hand. I knew how to handle it. I could have sworn I did. It's just a simple thing. Surely not big deal right?
Spoiler alert: Big deal incoming...

The developmental assessment. 

At six months old, Eliza had finally come face to face with her first stage of assessments. This time, it started with the new online Ages and Stages Questionnaire (or ASQ) that my pediatrician's office asked me to fill out before I brought Eliza in for her routine visit. 

Like the semi-responsible mom that I am, I sign in to the website, set up my log in information and settled in for what I assumed to be yet another medical form. 
Spoiling again: It so wasn't. 

The questionnaire started by asking about her fine motor skills. Does she grasp this, does she look at that. Yes, yes, whatever. But it quickly moved on to the others that weren't so simple. Does she roll over both ways? Does she sit? Does she balance well while sitting? Does she put weight on her legs? Does she pull her legs to her chin? Does she use each leg the same? Does she rest on her knees? Does she grab her toes?

All simple questions. I'd have thought nothing about answering the same questions for Jake. But with Eliza, each one felt like a punch to the gut. No, she can't do that. No, she won't do that for years. No, she might never be able to do that. 

And you can't just check "No" because that would be over too soon. You apparently have to crawl your way out of each level of Dante's Inferno as you also answer "Why" for most of these in a comment box. Awesome. Freaking awesome. Because I love typing "She has spina bifida" over and over again.

Can I just keep it real? By the time I finished the 40-50 questions and digitally submitted them to my doctor, I was in tears. This was my perfect gal. My heart. And some stupid machine had just effectively told me over and over again: "She's behind. She'll never catch up. She can't be like these other kids. She's failing. You're failing." 

It was emotional. And it was what folks in my circle call an "I hate spina bifida" day

Cue part two: 
Then on Friday, we were back in Nashville for her 6 month appointment in the NICU Developmental Clinic. This is basically run by the Vanderbilt NICU as a clinic for micro premies or kiddos born with a variety of diagnosises. They test the little ones, see if they're on track, and make sure all of their developmental needs are being met at home. Their research also helps them to prepare future families for what the realities of certain diagnoses might be.

Sure, I'm down with that, I thought.  
I thought wrong. 

The nurse practitioner spent almost an hour with us, playing with Eliza and attempting to get her to perform a series of tasks. Eliza is used to "playing" with doctors and therapists so this was old hat to her. She giggled her way through the tests, and then the nurse spent several minutes out of the room scoring it before returned to chat. 

"She's behind."
"She's below average."
"She lost points." 

All said to me. 

The test was made for the average 6 month old, which Eliza is not. She was graded on tasks that she is physically unable to do (pulling her legs to her belly, bearing weight, etc.). She was scored on milestones that spina bifida kids might take years (rather than months) to reach. On paper, next to the average 6 month old, she was behind already. 

I asked what we could work on. The NP said, "Nothing! She looks great! I'm so impressed." 
Swear, had I not been holding my precious baby, I might have thumped this woman in the head.

I left feeling completely defeated. Deflated. Tired. Beaten. 
I'd spent months watching her work so hard, keeping a positive outlook, celebrating every small victory, pushing back those overwhelming feelings and relishing what a blessing and joy Eliza is. 

And in two days, all those feelings were squashed. That hard work? Tossed aside. Those victories? Inadequate. Don't misunderstand me, I fully understand the intent behind these standardized tests for the average Joe. I get why they are used and how they can be helpful to most kids. But make no mistake, they do nothing for a special needs mom other than turn you into a puddle of your own tears. They are a line by line reminder that our kids are different and that their lives are harder. They rob us of our joy. 

So what did I do? Well, first, I cried.  
And ate ice cream. See previous post sbout my love affair with two fellas named Ben & Jerry. 

Then I went back to my village. My supporters. My encouragers. 
 I returned fire with my own 6 month assessment of how perfectly squishy and lovely my gal pal is. Because truth!  
 I vented to one of Eliza's therapists, who told me to put those assessments where the sun don't shine. And then went on to remind me how rad Eliza is and how she is blowing away the spina bifida norms. So far above average. Take that! 

And lastly? Well, I had to get the heck over it.  
This isn't something that will go away. It won't change in a year or two. This is our constant. 
Should my pediatrician's office have really bothered us with that asinine form? No, they should know her chart. 
Should that developmental clinic NP have acted like Eliza had failed at all the things when really she was doing her very best? Nope. She should keep unhelpful information to herself and perhaps provide an additional, spina bifida comparison type test. 
Should we stop making an effort because these people are being totally uncool? Still a big ole' nope.  

I can't fix everything that's broken. Eliza won't be able to either. But holding my head up and taking things as they come is a lesson in life that I'd like her to learn. So I guess that means I have to learn it too. Besides, who says you can't mutter obnoxious things under your breath to make yourself feel better?

Besides, we all know what a champ this little lady is. She's crushing it in her therapies and doing so so well. We are thrilled!!  
Seriously! Dance-party-thrilled!

Based on my own in depth assessment, she's tops.


1 comment:

  1. Ahh, Sarah, keep your head up! You are doing an awesome job, and so is Eliza!! She's beautiful! I am keeping all of you in my prayers.