Monday, October 7, 2013

Conversations with a Cuer: Marie Beck Janssen - A New Cue Mom

I first learned about Marie Beck Janssen after she posted a blog on her experience at Cue Camp Virginia. Through her blog I discovered that Marie hadn't been cueing for long, but was committed to using Cued Speech with her daughter, Mercy Anne. I took the opportunity to contact Marie for an interview in order to get a perspective of someone who is new to Cued Speech, but has taken to it like a moth to a flame.

Here is our conversation regarding Marie's experience with Cued Speech.

AC: Can you describe a little about yourself and your family? 

MBJ: My husband, Anton, is Dutch. I met him during a mission trip to Holland when I was 18. We were married two years later and I lived in Holland for almost 12 years. I have two older children, Victoria 17 and Judah 15.  Mercy Anne is our youngest. To get a good background on her story, please see my blog about her...

AC: In a nutshell, what kind of hearing loss does Mercy Anne have and what was the path you took early on in life?

MBJ: She has profound hearing loss, compounded by the Mondini Deformity. They did not do newborn screenings until after her birth, so we had no idea she was deaf until she was about 7 months old. I went to the doctor with my concerns and they brushed them away. She had standardized hearing tests at 9 and 10 months old, which she, of course, failed. They wanted to do another one at 11 months, but I'd had enough and demanded a specialist. The first doctor we went to said she needed tubes in her ears due to fluid build up and she needed her adenoids removed. This was done but naturally did not affect her hearing. FINALLY, they performed an official test and discovered she was profoundly deaf. The option of a CI was immediately presented to us. After much consideration and prayer, we felt this was the right option. A week before surgery, an MRI was performed which is when they discovered the Mondini deformity. The operation was suddenly in jeopardy. The surgeon was not sure if he could get even one electrode in. We had peace and went ahead. The surgeon was able to wrap the electrodes around a small bone in her ear (that should not be there). He was able to place 7 electrodes, of which 6 are turned on. The bare minimum for speech.

AC: How did you facilitate communication within the family? Did you learn any sign language?

MBJ: Yes, while in Holland, we learned Dutch sign language. Once she had her CI, we combined sign language with speech.

AC: Tell me about your experience with Cued Speech. How is it that you came across Cued Speech?

MBJ: When she was almost 3, we made the decision to move to the States, as we had no choices regarding how she would be educated in Holland. We wanted her to learn to speak and listen... and they were going to put her deaf education with sign language as the primary means of communication. We researched and found CASTLE in Durham, NC. She went to their pre-school and learned English and speech. She then started kindergarten in a normal school. She performed quite well but there were so many holes in her many delays. We would teach her something… she would have it... and then lose it again. It made no sense as she is extremely smart and has a memory that astounds me at times. I knew there had to be a key to unlocking her speech. Last year, we went to CASTLE for a mapping and they asked if we were doing Cued Speech. Uh, no. They told us we should look into [this] immediately. I'm so glad we did. I feel THIS is the missing key. She learned it super fast and her speech is better, she retains more and is missing so much less in the classroom.

AC: What was it like learning Cued Speech?

MBJ: I was intimidated at first, but found it to be much easier than anticipated. I had the system down after two days of training. It is now a matter of fine tuning... and practicing, practicing, practicing. I liken it to learning to type. In the beginning, your fingers have to learn where the keys are… you have to drill and drill. Typing is arduous and slow. But, with practice, you find your fingers flying across the keys without a second thought. So, we learn hand placements... and practice and practice. Hopefully, one day, my hands and fingers will simply go where they are supposed to without much thought.

AC: If you had to describe your experience at Cue Camp Virginia in one sentence, what would you say?

MBJ:  Cue Camp was an encouraging experience filled with insight, training, laughter and support.

AC: Looking back at your experience, how has Cued Speech impacted the dynamics of communication within your family?

MBJ: For Mercy Anne, things are much clearer. She knows what we are saying now and misses less of the conversation. The rest of the family still needs to learn it...I am her VERY SLOW it's hard to get everything transliterated for her but I do my best.

AC: Speaking of transliterators, does Mercy Anne receive cued language services in the public education setting?

MBJ: Yes! We are very blessed to be in a county that truly supports our special needs students.

AC: How has Mercy Anne responded to having transliterators in the classroom?

MBJ: Mixed. It's a process of her realizing how much she NEEDS one. She is very independent, already struggles with being different...and now she has someone following her around everywhere.  Some days she is ON it...watching Lauren like a hawk. Other days, she will ignore her, convinced she can do it on her own. Cue Camp was eye opening to her when she realized so many people cue...not just her.

AC: I completely understand Mercy Anne in regards to the CLT experience. I actually "fired" my transliterators in high school because of my insecurity in regards to socialization and acceptance, but looking back knowing what I know now, I would probably have gone about it differently. Some teachers are difficult to understand while others are very easy, so perhaps flexibility might be an option down the road.

MBJ: Exactly. I feel for her too. It's not easy. And kids can be mean...

AC: The funny thing is, I'm actually facebook friends with some of the "mean kids" that I grew up with. We will get over it and the post-secondary experience seems to be a different ball game in terms of starting anew. What does Mercy Anne want to do when she grows up?

MBJ: She talks about being a teacher, but she is also an amazing organizer of parties/events. I could see her running pretty much anything, including the world. Ha, ha. If you knew her, you would know I'm not exaggerating.

AC: That's funny. Who knows if she'll run the National Cued Speech Association someday? We are always looking for people with that type of energy! Thank you for sharing your experience with Cued Speech. What advice would you give for any parents who have children with hearing loss?

MBJ: Explore your options! There is so much out there today. Realize you are not alone.

AC: Great advice. Thanks so much for your time and I hope to meet you in person at a cue camp in the future...

Mercy Anne (in pink) with new friends at CCVA. (Photo Credit: Marie Beck Janssen)

1 comment:

Anonymous said...

As a stepmother of a grown cuer, it was like walking into a brand new world at Camp Cheerio. I gathered the basics in my classes but it is very hard without constant practice. I wish there were volunteers that you could skype or faccetime that you could try to practice with a few times a week.