One Family’s Story:
Know When to Hold Them
My daughter has never given me problems, not the biggies anyway-- no public tantrums, no dirty words, no calls to come up to the school. So when she started acting out at home a few months ago I was shocked. Who was this child? Where had my sweet little Anneliese gone?
“Why should she have to always repeat stuff for me? Why did she have to sign to her little brother? Why did her friends have to call through Cap-tel?..."
It had been a year full of changes and the last two months had been especially upending. Our oldest son, a freshman, made the varsity soccer team, a pleasant surprise, which required much travel time on top of an already long commute to his private school, where a full academic scholarship was both an honor and a large dose of ‘pressure to perform’. The whole household felt the stress and the tension. On very short notice, we found out that he had secured both a main role in the school’s spring drama production and also an opportunity to board in the dorms for the remainder of the semester. We thought we had three years to prepare for his departure from home, but within forty-eight hours, Joshua was packed and had moved out, happy for a reason to finally get a cell phone and promising to e-mail every day. He’d be home every weekend, but still, the brother she loved to annoy was suddenly gone.
Whitten, the little one, was into everything. Our main goal was to keep his hearing aids out of his mouth. At fifteen months he had drooled one hearing aid to death, another had been crunched (he had teeth by then); a third was flung out of the car in the gravel driveway and stepped on. We were all constantly watching to make sure they were in his ears, not in his mouth. Anyone who saved the aids from a close call got a crisp one dollar bill. His early diagnosis and intervention had been his saving grace. He was months ahead both cognitively and verbally. His ASL vocabulary, expressive and receptive matched his verbal assessments - truly a bilingual kid. We had started to relax a little. Did he just say “damn dog?”
My writing was taking off after several years of self-imposed hiatus and my kids were realizing that Mom actually had a life. “People pay you for that?” Their Dad was on duty Friday through Sunday so I could make deadlines and finish projects. I still made the big events, like weddings and funerals, but holed up in my office most weekends. “Dad is really in charge? Of like everything?”
Knowing that Anneliese was bound to experience the dreaded MCS (middle child syndrome), I tried extra hard to spend quality alone time with her. We had spa nights and shared a love of reading, spending hours snuggled on the couch. No Happy Meals for her, she loved what she called Fancy Pants Salad from a local deli, baby spinach with walnuts, pears, chicken and extra blue cheese. Forget pizza night! She was still the princess of the Bosworth household.
Her hearing loss and suspected auditory processing disorder had onset at age six. She started the first grade with an FM system. She had a mild bilateral loss in the low frequencies and was doing well academically, so we didn’t see the need to aid her yet. Her audiologist wanted to watch for a pattern and she how fast she progressed, but we soon started to see problems outside of the classroom. The volume on the TV went up, and the captions came on. She asked for more repeats. She got that “huh” look more often.
At the Christmas dance recital she was lost. Moving from the small practice room to the large stage changed the acoustics and she missed the music cues. Upset with herself and embarrassed, she was openly discouraged for the first time. After winter break we addressed the issues with the teacher and tried to work out a system to get her to the spring recital. She just wanted to finish the season. If she could just look at the teacher and follow her she’d be fine, but one mom insisted on trying to help. She’d stand behind Anneliese and tell her what to do, physically moving her when she didn’t respond. Not fully grasping Anneliese’s issues, she treated her like an impertinent child, once threatening time out. Repeatedly, I went to the administration and asked that the mother not be allowed to instruct Anneliese. The class rules stated no moms allowed. I could see it was going to be a long hard fight and prepared myself but after a particularly stressful exchange I withdrew her from class. The stress and negativity was impacting me physically and emotionally. For the first time I thought, “I quit, I give up, you win, it is not worth it.” I was tired of trying to educate the world, of having to push, of having to fight for something so basic and commonsensical. When I sat her down to tell Anneliese, I thought she’d be crushed. Our family rule is you finish what you start. You can try anything - a pottery class, tennis, a play - but you don’t quit in the middle. They had just tried on their spring recital costumes that day. I explained to her that Daddy and I decided that it would be better for her to stop dance class now. She started crying. So did I. I held her for a few minutes until she pulled away. “Oh Mommy, thank you. I didn’t want to go back. It was so hard. I tried so hard but I kept doing it wrong. I didn’t want to be a quitter.” I knew we’d made the right choice but I hadn’t realized how deep her fears were running.
A few weeks later I asked her a question; she said something, rolled her eyes and stomped off. I called her back. “Again,” I signed. “No,” she said. Excuse me. Whose child are you? In our house you can say it, sign it, write it on a piece of paper or even draw it on the Magna Doodle but when someone asks for a repeat you don’t say “no” or “never mind.” House rules!
She did come back and answer my question. Yes, her teeth were brushed but after her time out she gave me an earful. “Why should she have to always repeat stuff for me? Why did she have to sign to her little brother? Why did her friends have to call through Cap-tel? Why did she have to have a deaf mother?” She was sick of it. She was tired of having to deal with my problems. She can hear way better than me. “Why can Aunt Sarah hear fine? I don’t want to be like you!” She was spitting and stomping and screaming, then clinging to me crying. My baby girl was scared. She was scared she was going to end up just like her Mommy and I couldn’t reassure her. All I could do was hold her.
I refuse to lie to her, to tell her that she won’t lose the rest of her hearing; she probably will.
I do share with her new technology and how far things have come. I expose her to an awesome community of people of all ages with a wide range of hearing loss. We go to interpreted plays, deaf socials and captioned movies. She knows plenty of people with CI’s and aids and she gives the old people at church lessons on the ALDS. She’s working on her ASL and feeling more comfortable using an interpreter and she loves CART. I give her the tools, the technology; I try to show her how other people function.
We’ve had several conversations since “the meltdown.” I tell her that it’s okay to get mad, to get sad, to get upset. Hearing is hard; you get tired. I’m more open when I’m having a hard time, when I get frustrated arranging accommodations, when someone hangs up on relay, when I get mad that I can’t hear and that I’m different from other moms.
I tell her that she is a strong proud girl and that I am always here to hold her. That’s what mommy’s do. ~