When we learned of Claire's delays at 13 months, we were devastated. We attended her one-year well visit expecting a great report and instead we were told that she needed to be evaluated for developmental delays. We were completely shocked, like the rug had been pulled out from under us. We'd had concerns about her development from about 3 months, but were always reassured by the pediatrician that she was just on the slow end of "normal" range, but all was fine. We were dismissed as overanxious parents.
When we started going through all of testing and doctors appointments, the "nevers" started creeping into our heads and hearts. Our first child, our precious little girl, would never grow up to to be the writer I'd dreamed she'd be. She'd never get married, never have children, maybe never even get a job. I remember one day standing over her crib, watching her sleep, the tears running down my face, grieving over the life I'd imagined for her, the one she would never have. Instead of "the sky's the limit" attitude, we knew Claire's life would have a ceiling. She probably wouldn't be a doctor. In time, however, we came to accept that ceiling and adjusted our expectations.
As time passed, Claire started making progress. She was still delayed, but she was keeping on course with staying only a year or two behind her peers. She would get there, we realized, it would just take her a bit longer.
As school started, we saw that Claire could hang pretty well with her peers. She didn't stand out as the "kid who needed the parapro" and she continued to make pretty good progress in certain areas. We knew there were still challenges, and specific issues were becoming more evident, so we focused more on things like handwriting and math. Her private therapists worked tirelessly on these deficits too.
Things were good, much better than we initially expected. We always knew there would be limitations to what Claire would do in life, but we happily accepted that she could possibly live on her own, maybe even get married, have a productive life, maybe go to community college to learn a trade. We adjusted our expectations for Claire and life went on.
But then the rug was pulled out from under us. Again.
On Friday, we met with the school's psychologist to go over some preliminary scores from some of her yearly evaluations. We expected to learn that perhaps her reading progress wasn't as rosy as we had been told. It turns out it was much more than that: she has regressed over the past two years at her current school, and despite the glowing progress reports and grades from everyone there, we are now starting to hear suggestions of taking her out of the general education population into the "CI room." CI stands for cognitively impaired, and this is a classroom for students who need more specialized instruction in a number of academic and functional areas.
It was another time to grieve, another reminder that her challenges are closing in on her, lowering that glass ceiling once again. It reminds us that while she is making progress, she is not progressing like her peers. Clearly we want what is best for Claire, and we know a CI room is not the end of the world: in fact it may be just what she needs. But that news is always shocking and always puts us back into grief mode.
We will pick up our broken hearts, readjust our expectations once again, and move forward. Life goes on.
But it really hurts to have the rug pulled out from under us once again.
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In case you need some help, here's a place to start: Sally is a parent and advocate for her child with special needs. She blogs at sallysblog.com.