Coming to Terms with My Role as a Mom of a Special Needs Child

Image source: Thinkstock
Image source: Thinkstock

When I adopted my newborn daughter Clementine from foster care, I did so knowing that there were many unknowns and risk factors. There was a small possibility that she might have medical difficulties of some sort. However, when she arrived, she was a beautiful, five-pounds-14-ounce bundle of joy, and both the hospital and follow-up pediatricians gave her a clean bill of health. I breathed a sigh of relief. She ate well, slept well, and was all around an easy baby.

Some time around the six month mark, the adoption case worker asked me about Clementine’s crooked smile.  “It’s cute, isn’t it?” was my reply. I went on to reassure her that her pediatrician had seen it and was not concerned. The case worker pressed me further, though, and strongly advised that I get Clementine “fully” checked out before the adoption went through. I obliged.

In order to get a referral for genetics and neurology from the pediatrician, I inquired about Fetal Alcohol Syndrome and Fetal Alcohol Effects — knowing that these conditions are very tricky to rule out. I got my referrals and was reassured that Clementine’s wonky, adorable smile was a harmless, minor birth defect.  The geneticist drew some blood and sent us on our way. I checked the follows-case-workers-instructions box in my head and thought that was that.

A few weeks later, I was surprised when I received a call from the geneticist. “I received the test results for Clementine. Is the adoption finalized?” he asked.

“What kind of freaking question is that?” I thought to myself. “Is there a problem?” I responded.

He simply said he needed me to come in to discuss the results, and again asked if the adoption was complete. But I was adopting her no matter what. That wasn’t even up for discussion, and I let him know, and demanded to know what the tests showed.

He went on to tell me that she had a rare chromosome condition, one that I had never heard of before. After the phone call, when I Googled it, I was somewhat relieved at what I read. Clementine’s condition put her at risk for developmental delays, mild intellectual disability, autistic features, and obesity. “I can handle all of that,” I thought.

I met with the geneticist and he gave me copies of several email correspondences he’d had with specialist through the country. In them he asked “What would you advise about the adoption?” I was glad to see that everyone had dodged that question. He also gave the name of research studies to participate in and then he walked me to another building and introduced me to a group of specialists, all who apparently knew I was coming in. All the while, I felt unusually calm. Maybe I was in denial, but I engaged in the whole medical aspect of appointments, filing out forms, initiating Early Intervention services, the MRI and more testing with purpose. Each night I would still be putting the same sweet little baby to sleep. She hadn’t changed, and the diagnosis seemed so abstract — merely theoretical. I told my friends, but their denial was even more pronounced than mine. It was usually “Are they sure? There’s nothing wrong with her!”

I decided to embrace the same attitude.

But sometime between 18-months-old and Clementine’s recent second birthday, other people began to notice that Clementine was different and that’s when it started to sink in. Despite constantly seeking out social interaction, she doesn’t say “mama” or even call for me. Her vocabulary is “hi”, “bye” “ha” for hot and “ah” for jump. We’ve been working on the “o” sound for months. Other children have started to innocently ask me why she doesn’t talk. So far I’ve stumbled over my words. Do I say she has a condition? A disability? Or do I just ride the euphemism of “delayed” as long as I can?

I found it incredibly helpful to join a local special needs forum for parents. I wish I would have done so a lot sooner but I was emotionally hesitant to officially tack on the “special needs” label. But I have now embraced that label. I’m not even sure I could pinpoint when I crossed over that hurdle. But I did it and I can finally say it strongly: I’m the mom of a special needs child. It’s a journey I’ve finally owned up to being on. I have never second-guessed it or looked back ever since.

And I have to admit, we’re having a lot of fun.

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Article Posted 5 years Ago

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