I was recently asked to speak to a high school class about my daughter's exceptionality. Our daughter, now 19, was born with a bilateral hearing loss. Raising her has been an unusual adventure and definitely one I felt ill-equipped to manage in the beginning. Throughout her life, I have talked to a lot of new parents about their child's exceptionalities and there seems to be a lot that scientists and doctors can't do to help families.
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| Emma about 6 months old |
From the Beginning
Emma was born after Indiana had mandated hospitals to do hearing tests at the hospital in the hours following birth. Emma failed that test and we weren't initially told. The following day when she failed it again, a nurse stopped in with an information sheet and let us know we should contact our Children's hospital to make an appointment to have a more detailed test performed because she appeared to be Deaf.
That's it, have a good day. **Sarcasm**
We were 25-year-old parents of two left in that hospital room unable to even conjure up a cohesive question between the two of us. There was no family history, no indication that she had failed the test the day before and the actual pediatrician did not bother to stop in and chat, you know because I had hormones coursing wildly through my body and felt like someone knocked me off a cliff. Perhaps a few minutes of a doctor's time would have helped.
Excuse me, nurse, I delivered a perfect, beautiful 7 pounds 14-ounce daughter 24 hours ago, I like plans. In fact, I like plans for my plans. I am going to need you to take this piece of paper and ....
It took a winding road from there to determine, I was always right. We did, in fact, have a perfect child. She was perfect the way God delivered her to me. She was destined for far more than the average kiddo, and this is where EXCEPTIONAL comes into play. She wasn't ordinary, she would become quite extraordinary as soon as I got out of her way.
| Emma at 2 with her WILD hair and day one at IU |
If you are battling a new diagnosis with a young child that has an exceptionality, I am not suggesting you smile and get excited. Sit in it, cry about it, throw a fit and have a "not so nice talk" with Jesus about things. Then get it together because I promise, that child is about to teach you so much. Some family or friends will say hurtful and downright stupid things to you. "Oh, good maybe she will smile and be happier now" indicating that my baby girl has been unhappy from birth to nearly 3? No, she was actually the most content and happy child I had ever been around but Deaf kids don't always make a lot of noise. Different is okay.
Emma was initially diagnosed with a mild to moderate bilateral hearing loss. This means both of her ears were operating at about 75-80%. Due to some medical misinformation, we didn't fully get this diagnosis until she was nearly 3. Her speech was delayed and she had an unrelated issue with fluid in her ears. She started speech and got her hearing aids a few months before she turned 3. She had seven surgical procedures to place tubes, do sedated hearing tests, and MRI's later to determine she didn't have any additional issues.
| Emma and big brother, David |
In the midst of trying to figure all this out, you are still a mom. A mom to all of your kids so the added guilt train shows up that the kids that are...well... unexceptional are not getting what they need. Actually, they are getting more than they would have because they are learning to be patient, love ALL and be compassionate.
My husband and I approached this situation very differently. He sort of shrugged and said okay. He attended all the appointments, he accepted the diagnosis, he cared. He did not dive in headfirst into the anxiety spiral I did, worrying about every single thing that might happen in the next two decades. We had been married nearly eight years (pretty happily) and his seeming nonchalance toward her impending doom was a little more than I could handle. I probably needed a place to set my anger down for a minute, and he was definitely a target. It took years for me to realize he just thinks on a whole different level than me. I think the word rational comes to mind...I am not always so rational.
I worried about whether she would learn to speak, have a speech impediment, have friends, be treated well, learn to read, learn alongside peers, finish high school, have a boyfriend, have opportunities, be an outcast, get married, have kids...
Are you wondering why I mentioned she might not learn to read? Yea, because I quickly jumped on the internet like all good moms do, to find out all the medical and scientific research. At the time, it was reported that Deaf children would finish high school with a fourth-grade reading level if they completed high school at all. FANTASTIC! That is just awesome right? Did I mention it was my first year teaching when all this happened, so education is sort of a big deal to me. She is currently a freshman at Indiana University as a direct admit to the Kelley School of Business (i.e. she can read, in fact, she reads at a collegiate level so don't believe all the doom and gloom).
Here is what I have decided, what we worry about doesn't usually happen=WIN!
Also, things sneak up on you that you didn't expect and take the wind out of you.
Emma has lost a great deal of hearing from 2-10 years old, both nerve loss and two eardrum explosions that resulted in scar tissue on the eardrum. By ten years old, her diagnosis shifted to moderately to severely (a loss of about 50 more decibels) Deaf. Nope wasn't expecting that. She was in speech from 2-8 and she does not have a Deaf tone in her voice but does have a bit of a lisp with "s" sounds which is a sound she cannot hear.
She has made really good friends at college and joined the IU Women's Rowing team making her a D1 athlete (maybe their first Deaf rower). She has had a wonderful, kind, Christian boyfriend for nearly 7 years....yep since they were 12??? She was a competitive powerlifter and cheerleader in high school.
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| Emma and longtime boyfriend, Brendan, through the years |
A lot went really right and I shouldn't have worried and wasted so much time thinking up all that might go wrong. I wish I had been able to funnel more of that energy into prayer.
| Emma's Bows vendor booth |
Good thing come from difficult paths.
The things I didn't expect were how her Deafness would set her aside from others in a variety of ways. Being Deaf made her a lot more mature than her peers. She is very compassionate and created her own business (Emma's Bows) when her Teacher for the Deaf was diagnosed with cancer. She has donated nearly $50,000. This volunteerism was a cornerstone to getting so many grants and scholarships that her education is paid in full. Due to her maturity and success, she has been given a lot of opportunities including taking part in "Johnson County Youth Leadership" and our local "Mayor's Youth Council". She has a big heart and a desire to cheer others on. In 2020, she was nationally recognized in Portland at the Council for Exceptional Children's annual "Yes I Can" award.
| Emma accepting her award |
The hardest thing as a mom has been seeing the inevitable loneliness of being Deaf in a hearing world. She technically had friends in high school, she was homecoming queen and well-liked. However, she misses a lot of social cues and can't hear a lot of what goes on around her. The heartache of being left out throughout school was very hard on her and hard to watch as her momma. Friends would have get-togethers but she wasn't included. Our children reach a point, that we cannot schedule their playdates and create friendships.
What I wish I had accepted sooner, was that God created her exactly as she is for His greater purpose. She is an inspiration and a Rockstar. She navigates being Deaf in a hearing world. She amazes me and continues to rise to every occasion.
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| Me and my girl pretending we understand or care about football |
Hindsight
What we should have done, was get her involved in the Deaf community. I didn't realize or value the importance of her culture that is different than mine. She will be taking sign language at IU but there is more we should have done to let her experience her own culture.
As far as school/education goes, we were blessed with two amazing Teachers for the Deaf that grew her into a champion of self-advocacy. We also did the work and the research to advocate for her in the early years. We had some pretty serious fights for her rights early on and learned a lot about the special education system. If you know you are right, don't back down, fight the fight for the services your child needs. Another amazing cheerleader in Emma's life has been her audiologist. Dr. Carrie Hill, owner of Advanced Audiology in Franklin. Carrie has been by our side since Emma was 18 months old. She is also Deaf and has been a patient friend to me and mentor for Emma as we navigated this foreign world together.
| Jane Ellen her original Teacher for the Deaf (3 years old-6th grade) and inspiration for Emma's Bows |
| Tai her Teacher for the Deaf 7th-12th grades |
In summary, if you or someone you know is struggling with a diagnosis of Deafness or exceptionality, don't look 20 years ahead. Worry won't change any of it, pray and do your best. Teach them to embrace their exceptionality and be so proud of who they are. In the end, they will teach you far more than you could ever have taught them.
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