There are times as a parent of a child with special needs, that you avoid testing or assessments. Maybe you think it isn't needed, maybe you think the doctor was wrong, or maybe-like me-you're just scared. Maybe you can take multiple diagnoses like Hydro, CVI, PMG, etc. but maybe there is one that just brings you to your knees (literally). For me, that dx was if Nic was totally blind. In the NICU, we had a rather taunting doctor that repeatedly insisted we needed to “understand” that Nic was deaf-blind, that she brain couldn't possibly support the function of either sense. This doctor followed us around so we "could fully understand the implications of Nicolette's conditions". He even laughed at me when I read books to Nic in the NICU.
It wasn't that we wouldn't love Nic is she was deaf-blind. It wasn't that we wouldn't try to support her if she was deaf-blind. It was that I was terrified that I wouldn't have what it took to be a good mother a child with those impairments. Could I learn sign language and other techniques fast enough? Could I brush off the looks, the comments, the teasing fully enough? Could I accept and table my own grief completely enough?
Deaf I could handle. My SPED background told me the assessment timing of her ABR (just three days after surgery -WTH?!!!) just less than ideal and that maybe, just maybe enough to skew those severely impaired results. We retested Nicolette's hearing in January. It came back normal. He husband nailed it when he said, "I never taught I'd see the day where 'normal' felt like winning the lottery". He was right; that was exactly how it felt.
The second dx ate at me. There were days Nic seemed to tract objects. She looked at everyone's face when being held. She didn't return smiles from people 3 feet away from her, but I couldn't see at that distance without my contacts. Was she like me? Tuesday, 4/7, I finally allowed Nic to be evaluated.... I finally "sucked it up" and realized that my fears shouldn't hinder our daughter's therapy. If she was blind, then we needed to figure out what to do ASAP. The world wasn't going to change for her; we have to prepare her for the world.
I'll never forget the fear inside me at her functional vision assessment. It was like I cried inside myself for an entire hour. And then it happened.... "I'm not one to talk about other medical professionals, but whoever told you she was blind should rework their assessment techniques." My daughter does have CVR. She does have a limited field of vision. She will need help to learn to compensate for those impairments. BUT SHE HAS VISION.
I'm learning this road is a long, long uphill route. One with mislabeled signs, bad maps and scary detours, but now and again... just when you feel like totally losing it... you stumble across the best of views. You learn how to become thankful for things you never realized were gifts.
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