Archives for April 2017

By Sara Kennedy

Anne Toilette and the Homebirth Story

Our third child stormed into the world in the first strange light of an incredible late summer fog. Labor was so different this time — I wasn’t sure I was even in labor until transition hit while I was in the shower (you never know when they’ll let you bathe again). My husband had the baby’s head and one shoulder as the midwife arrived, and I was yelling “she’s not going to make it on time!” The baby boy (we just knew!) then arrived, and we were laughing in shock and surprise at a baby girl and her less-than-two-hour labor. She was very much a girl with intense blue eyes and the palest skin. Because she was born in the bathroom, the uncles had all sorts of names suggested – including Kohler, Aqua Porcelaina, and my favorite: Anne Toilette.

We have the midwife on video measuring, weighing, checking reflexes and estimating age, and ringing a bell to screen her hearing. She definitely seemed to respond and I can still hear my voice saying “she’s going to be an early talker.” The newborn screening mandate had passed that year, but my midwife had not received any official news about it yet. Of course we knew nothing about that, either.

I returned to my job as an occupational therapist and Sara Madeleine (Sara the 8^th in my mother’s line) made frequent visits to the therapy clinic where I worked. Her next older sibling was a late talker, finally coming out with words just as she turned two, so we weren’t worried when Sara Madeleine didn’t start talking by one year. We did notice by her birthday that if she hadn’t seen us arrive at childcare that she continued playing. Once she saw us, she toddled over right away for a big hug, and, organized child that she is, usually went to get her backpack for the ride home. After awhile, we could no longer chalk this behavior up to a great attention span. We took her in to check her hearing.

Yep, we also dropped the pots and pans as most parents seem to do, with mixed results.

Getting to the hearing test was a process. First, the exam at our doctor’s office ended inconclusively with a referral to an ENT, After four more weeks, we got in to that ENT, who seemed to only say “yes, she has ears” on a physical exam. We knew her eardrums (tympanogram testing) were fine at the doctor’s office. The soundbooth test weeks later should have been enough to convince me as my ears hurt while holding her through the test, but she didn’t appear to notice the jarring sounds. She got a kick out of the jumping monkey with cymbals. Unfortunately, the ENT got my fear level up when he said “we used to do the ABR (automated brainstem response test) right in the office, but we don’t have resuscitation equipment.”  I couldn’t believe they would sedate our daughter with such a brief physical exam – what if she had a brain tumor? So we went round and round with the office but finally agreed together that she would be the oldest toddler ever to have a sleep deprived test. Hoping to keep her drowsy as long as possible, we also brought in an acupuncturist to work with her, after we’d read about the use of acupuncture for surgery in China.

The Label

Sara Madeleine had a profound hearing loss. 

I remember nothing past hearing those words, except asking if we could wait and think about their plan of intervention and hearing aids right away, or if we could ponder all of this through Thanksgiving and Christmas and start in the new year. I also knew we had tapped our savings for maternity leave and had no idea where we’d get the money for hearing aids, if she could even use them. As we left the office, we saw the ENT and asked if there was anything we could read about this, and he said “not until we get to the cochlear implants.” Of course I googled that when we got home, and was shocked to find that “profound hearing loss” meant she was deaf. No one had used that word with us yet.

My only experience with a deaf person, other than the late deafened seniors I worked with in the hospital, was a man who handed me a card at a fast food restaurant stating that he was deaf and asking for money. (I later learned that most of those folks who do that aren’t even deaf!)

I knew from the start, and my husband agreed, that our goal was to get her to read and write well, regardless of speech abilities. I thought that was going to be the key to her being able to support herself and do what she wanted to do in life.

Then began an intense period of study. Her hearing aids would not be covered by insurance. Coupled with that, we were mystified to find was an ongoing debate and opinions about the whole continuum of the communication choices available. Coming from health care, I expected to hear about “best practices” and “researched based intervention.” Hmmm. We were alternately told by strangers and relatives alike that we must sign, that we mustn’t sign. I don’t know how some of these crazy folks even got our phone number.  I was amazed that people still said things like “deaf and mute!”

Thankfully, by then we had met our CoHear and begun homebased services, so we had someone to help us sift through what was based on research and what was someone’s fondly-held conviction. I wish we had met her sooner in the process: we would have had help with hearing aid funding, perhaps met another family, or even a deaf adult. You can’t know to ask about what you don’t know!

One unexpected change was Sara Madeleine’s name. SM wasn’t a great sign name, (ahem) and after we understood more about her hearing, we doubted that she could hear or say it. So she became Maddie at just over two years… unfortunately her baby sister Abbey had already been named. I will never get the two names right in a sentence.

Writing for Joy

I love words. I write for fun. Scrabble is my idea of the perfect game. I couldn’t comprehend raising a child for whom this might not be a possibility. Maddie made rapid gains in language once she was hooked up with her CHIP facilitator, who helped us see through careful assessment that her strongest skill was gestures, and how she used them to communicate with us. She wore her hearing aids without much fuss (other than in the noisy car). By the end of her preschool years she had sight words, she was writing, talking, signing, and making her every opinion known. While she did have a 10-decibel progression in her hearing loss at age 4, the new digital aids seemed to help her hear better than before. Maddie has been lucky to have had many, many creative and smart teachers, therapists, and audiologists on her team. I also count the many parents I have met and learned from as crucial members of her support force. In third grade, she left the cocoon of the centerbased program we all loved for the stronger academic challenge of her hearing peers and the neighborhood school, and she did well. Of course, there are many pros and cons to that choice. She has both friends who hear and friends she cherishes who are deaf/hard of hearing. She knows deaf adults that she looks up to. She hopes to be a paramedic so she can “save people and drive fast through red lights.” At age seven, she lost the rest of her hearing that got her anywhere near the coveted “speech banana” and made hearing aids useful, and she lobbied us hard for a cochlear implant. It is serving her well. (See Maddie’s Choice on the https://handsandvoices.org website.) I have no doubt that she will continue to be her own best advocate.  One day I shared with her the usual statistics about reading levels in deaf students, and she said and signed, “That is not going to happen to me.”

Her midwife? Pam went on to develop a hearing screening system for all babies born at home in our community, and works closely with the HCP staff on this task.

We can’t imagine life without Maddie, just as she is.

Regrets – I have a few (music swells.)

Just one big regret. I buried myself so much in Maddie’s education that I didn’t notice how this impacted our lives. My older kids had fewer activities, date nights were rare, and everything was about learning and hearing loss.  I would like to remind parents to make sure they make time for their marriage and take time off just to enjoy this child and all your children. Perhaps this sense of urgency hits late-identified families harder and there is indeed so much time that has been lost. But the occasional day at the lake or a night out with the person you promised to love and to cherish is sometimes more needed than an appointment with the Professional of the Day. You can do this, too, and you can help your child better than the parents who went before you.

Parent Guides are happy to share what they learned along the way with you and help you answer questions you have not yet imagined.