By Cynthia Smith Huhman 
I’m certain that it rarely crosses the mind of a parent upon learning that they are expecting a child that this could be a lifelong challenge. Every parent naturally expects the normal ups and downs that come with raising a child but what if that child is born with unexpected “special needs.”
My third pregnancy seemed normal, I only gained 17 pounds, and I didn’t suffer from anything other than nausea. I was in labor less than 2 hours and she was born on her due date. She was a beautiful baby with a head full of gorgeous dark hair, chubby, and amazing and I was back in my jeans within a few weeks. It doesn’t get any easier than that, right?
She was hard to hold, I’ve never seen a baby slip through your arms. She was like holding a big balloon that wasn’t fully inflated, she just slipped through. It was then she was diagnosed with Congenital Hypotonia aka low muscle tone. She couldn’t hold her own head up but she was the happiest baby I’ve ever seen, with a great big toothy grin. At 18 months she still hadn’t walked. She finally learned to roll; she rolled from room to room. Her massive head of hair hid the extremely small size of her head. She finally walked by the age of 2 years but with difficulty.
I spent the next few years asking questions.
When she turned 5 she was so excited to start school, but my social bug was cognitively slipping farther and farther behind her peers. She soon began meeting with an occupational therapist at school.
Over the years we’ve met with specialists, no real answers, wrong answers, MRI’s, genetic testing, tests to measure intellect, therapists, blood tests, etc. We’ve had more IEP’s than I’d ever care to attend again, her classmates wouldn’t accept her, she was bullied, made fun of, and we had fights with the school to include her in the classroom and in activities.
I didn’t believe she should be treated different than any other child, they are all special. She is held accountable for her actions, she has chores, she’s attempted and passed a college class, loves to fish, can drive a tractor, she babysits, good with computers, she hates doing dishes and laundry, but she can cook a mean hotdog. Bethany is high functioning, meaning she can easily disguise her disability. She can do most things that she puts her mind to and most people just assume she’s just a little “quirky.”
We finally had a diagnosis approximately 6 years ago, as close as we’ve ever gotten to a diagnosis, she has extra “stuff” on her chromosomes and is “intellectually disabled.”
While everyone else her age is enjoying their second year of college, many of them in relationships, some of her classmates have had children already, but she’s still home. I’ve tried to come to terms with my role as her parent, it took me a long time and yet I still struggle with it. I think it’s an ongoing process. Am I doing the right thing? Could I have done better? Her life is totally in my hands and some days I feel guilt and exhaustion.
As she gets older we are experiencing a whole new set of challenges; rides to work because she does not drive; she has trouble staying organized and forgets her schedule. Thankfully this job has been very forgiving. Social media scares us, she has a deep desire just like anyone else her age to be accepted and have friends. Social media does not attract the kind of friends that we want someone like Bethany to have. We’ve deleted the account. We’ve had to call the authorities on more than one occasion.
Is there a lesson here? Love unconditionally; never give up, and ask for help, you can’t do it alone. Take time for yourself; that’s a big one! Pay attention to your child, they are all special.
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