FRUSTRATING
Note: The intent of this blog is not to criticize the Ages and Stages Questionnaire. It is to simply point out an experience involving completing the questionnaire.
I have been meaning to comment on this for a while but my experience today put me over the edge. I correctly predicted a lot of things when I was told Maddox had down syndrome, but one thing I did not predict was how glaringly difficult the whole achievement of developmental expectations was going to be.
When I was two months pregnant with Maddox I signed up for one of those track your pregnancy websites. They send e-mails every month about how big the baby is (usually comparing them to a piece of fruit).
Anyhow, I didn’t realize when I signed up for those notices that I would continue to get them- even after Maddox was born. Month after month, developmental notices fill my inbox, “This month your baby should be doing.....”
It was all that and more for months one, two, and three when the biggest expectation was a coo or smile. Recently I received the 16 month developmental checklist. I don’t even open them anymore, I simply drag them to the trash.
Nonetheless, every time a new one shows up in my inbox I am reminded of the typical walking and talking baby I dreamt of for those precious nine months. I know, some readers are sick of hearing me talk about the normal baby I dreamt of, but darn it, it’s the truth, it’s where my mind wanders to. Every single time.
The icing on the cake....Maddox’s 16 month well baby appointment today.
Everything Maddox does, every question we are asked revolves around how old she is and what she can’t do. It gets tiring. No, she is not using a pincer grasp, no she is not throwing a ball, no she doesn’t say any words, no she is not walking, nope she can not bring something to you when asked, no she can not drink from a cup, no she is not using a spoon, and my list goes on and on.
With every no answer, my heart aches and I find myself forgetting about all the things she really can do.
Back to the well baby appointment. I am handed a questionnaire. It is the Ages and Stages 16 month developmental questionnaire. Good thing the office clerk is not a mind reader or she would have kicked me out. I couldn’t believe it. I was torn between the clerks innocence in doing what she is supposed to do and losing my sanity shouting out for people to get a clue.
Let me put it this way. Pretend your high school student is about ready to walk across the stage to receive their diploma. You are an extremely proud parent wanting to show your new grad off to the world. You have witness how hard they worked to get there and guided them every step of the way. Just as their name is called, some stranger smiles and hands you a piece of paper. On that paper it reads, “Graduation requirements.”
As you start reading through the requirements you realize deep down in the achy part of your heart that your precious hard working child is not even close to meeting any of the standards. In fact, years away from meeting those standards.
Slam.....
Everyone else's kid met those standards.
You can’t help but wonder what the future holds for your child as you watch their peers graduate and head off to college.... Leaving your child behind, the one who worked the hardest.
How will you explain this to them, how will you get them caught up, and will they ever be good enough?
Because according to that paper, they are not good enough.
You see, what is appears to be a simple little sheet of paper to most people can create unimaginable grief, anxiety, and panic for me. To anyone who thinks they understand what this is like has obviously not walked in a mile in my shoes.
The rest of the story.....
I left that Ages and Stages questionnaire blank and the most remarkable thing happened.
The pediatrician saw that I left it blank.
And she threw it in the trash.
She got it, she understood this. You know what? If I was able to reach one person today and teach them something about this new life I am living, then even with the pain, I consider today a success.
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