One Family’s Journey: CART Keeps Military Family Moving

By Deb Schwedhelm, Kansas

Here we are all ready for seventh grade and anxious to meet our daughter’s new transcriber. My heart swells as a proud mother of Kiele who is at the top of her class.  It’s hard to believe that just four years ago she was a struggling third grader.  As I reflect upon our journey, I can see we have come a long way. 

Kiele was born in Tucson, Arizona in May 1997.  There was no newborn hearing screening at that time.  Kiele was my first child, and I was excited beyond words. At six weeks, I had to return to work as an active duty registered nurse in the Air Force and Kiele went into a full-time home daycare. At four months, Kiele didn’t seem to be responding to sounds the way I thought she should and I became suspicious that she was deaf. I expressed my concerns to our pediatrician, and Kiele was referred for an auditory brainstem response (ABR) test.  Kiele failed the ABR test, but the hearing center said she failed because she wasn’t completely asleep during the test. Within weeks of that test, Kiele seemed to start responding appropriately (so I thought) and no follow up of the failed ABR was done—by the pediatrician or the hearing center.  Life went on normally until... In 2000, Kiele (almost three years old) had gotten very sick with dehydration and a bilateral ear infection. During an outpatient visit, the pediatric nurse practitioner, who I worked with in the Family Practice Clinic, asked me,

“Do you think Kiele’s talking okay?”

“Yea!  I think she’s made all her landmarks and stuff.”

“Hmmmm...why don’t we send her for a speech evaluation anyway.”

Late Identification

Shortly thereafter, Kiele had a thorough speech evaluation, which she passed!  The speech therapist said that she was dropping end consonants; however, she would pick them up with time. As part of a standard speech evaluation, Kiele also had a hearing test, which she failed--again and again. 

All of a sudden, my very normal life was sent into a tailspin. Kiele was immediately given loaner hearing aids and enrolled in the Arizona School for the Deaf and the Blind. It wasn’t much longer that we learned that Kiele’s hearing loss was progressive...but that was only the beginning of our journey. By December of 2000, I had been relocated to Eglin AFB in Fort Walton Beach, Florida. There, Kiele attended an early intervention preschool program within the local elementary school.  In 2002, I married a Naval Officer, who got assigned to Whidbey Island, Washington, in October, 2002. It didn’t take long before we decided it was too difficult to remain dual-service, at two different bases, with a child who had a hearing loss. In April 2003, I separated from the Air Force and joined my husband at Whidbey Island.  It was there that I decided Kiele’s hearing had gotten bad enough and it was time to consider a cochlear implant. 

Choices

After initial testing at Seattle Children’s Hospital, the audiologist informed me that she didn’t think Kiele would qualify for a cochlear implant. “She does too well in the booth,” the audiologist told me.  Somehow we ended up meeting with a second audiologist, the Chief of Pediatric Audiology, who re-tested Kiele and she did end up qualifying. Kiele was implanted as a very borderline candidate in September 2003, at age six. During our assignment on Whidbey Island, we traveled to Seattle (four hours round trip) two to three times a week for appointments and therapy. 

School Challenges

Kiele struggled through first grade. She was placed in the lowest reading group and scored below average on most standardized tests. By the middle of that year, Kiele’s case manager (her speech therapist) and first grade teacher suggested that the Deaf/Hard of Hearing (DHH) school might be a better fit for Kiele. The DHH school was 40 minutes away and used a total communication approach, teaching for two hours every day, using only American Sign Language. Kiele was fluently oral so this did not feel like a good match to her needs, which I repeatedly pointed out to the school to no avail. Frustrated beyond words with being challenged on absolutely everything, I did contemplate the transfer for a short time. In the end, I decided that Kiele’s zoned elementary school was the best fit for her and that as her parent and primary advocate, I just had to do my part and fight for appropriate services.  

In January 2004, I contacted the Washington State Coordinator for DHH Services for help. The State Coordinator agreed to evaluate Kiele in the classroom and attend her IEP meeting. The Coordinator had agreed with Kiele’s current placement and to everything else on our advocacy list. All of a sudden I wasn’t “that crazy parent” any more, which was very validating. In January 2005, after two years on Whidbey Island, the Navy moved us to San Diego, where we were blessed with the most amazing DHH itinerant teacher ever. I can’t say enough about finding that one person you can trust through and through—that one person that isn’t worried about school politics, etc. During our four years in San Diego, Kiele thrived and by fifth grade, she not only caught up, she was at the top of her class.

Bring in the CART

When Kiele was in third grade, I had heard about transcription services (also known as CART: communication-access real-time translation) for DHH children from another DHH parent. I immediately recognized the potential benefits of this service for our children and began talking to the DHH itinerant about getting transcription for Kiele.

It was mutually decided that Kiele would try transcription in fourth grade for one subject. That went very well. In fifth grade, Kiele received transcription services for two subjects. By sixth grade, she had transcription for all subjects except the classes where transcription was just not a good fit, due to teaching style or methods.  

This past January, my husband, Steve, got orders to go to Kansas for one year not knowing where we will be assigned after that year would end.  So we had to make the decision:  would Steve go to Kansas alone, while the kids and I stayed in San Diego or would we go to Kansas as a family? Moving any middle school child for only a year is tough; moving a DHH middle school child is that much tougher. In addition to that, Steve had just returned from a seven-month deployment to Iraq. After lots of discussion, stress and tears, we decided to go for it and move as a family. Not knowing what I’d be up against in Kansas, I did my research—spoke to multiple special education DHH lawyers, contacted DHH organizations for assistance, downloaded heaps of articles and spoke to parents who had gone as far as due process to gain transcription services in the classroom. 

Maintaining Services after a Move

I’m happy to say that Kiele will be receiving transcription in all her classes this year in Kansas. Things were straight forward on Kiele’s IEP and of course, we had the following law, which was revised in 2004, supporting us:

“Interpreting services include—(i) the following, when used with respect to children who are deaf or hard of hearing: oral transliteration services, cued language transliteration services, sign     language transliteration and interpreting services, and transcription services, such as communication access real-time translation (CART), C-Print, and TypeWell...” IDEA Sec. 300.34 (c) (4).

Now in seventh grade, Kiele is in the gifted program and at the top of her class. Due to our frequent moves in the military, this is Kiele’s seventh school.  She loves to read and write and is passionate about horses.  Through the years, I’ve taught her that her cochlear implant is no different than her glasses—she needs her glasses to help her see and she needs her cochlear implant to help her hear.

This journey from Arizona to Florida to Washington to California and now Kansas has not been an easy one, however, it has been a journey about love, passion and the desire for my DHH child to have services appropriate for my daughter’s needs and just be a kid like every other child out there.    ~