PARENTS FOR COCHLEAR IMPLANT - WWW.PUZNICA.HR

Learning to Listen and Speak

Individual Rehabilitation

We had some general idea as to what kind of rehabilitation practice we could expect in Croatia. We were aware that it would not meet our wishes. We had obtained a good insight into the rehabilitation methods for children with cochlear implants in America, their progress and working conditions. My wife read a considerable amount of literature on this and we also bought some new courses on videotapes. It was clear that both the rehabilitation team and us would have to make adjustments. We had no problems with audio-rehabilitation specialists, but we had problems with the institutions. In fact, it turned out that the situation in the institutions was worse than we expected.

Ana and Professor Zlatarić

After returning to Croatia, in March 1999, we resumed Ana's rehabilitation under the guidance of Professor Dunja Zlataric at SUVAG, twice a week. The hearing and speech rehabilitation was a two-way process. We learned from our dear Professor Zlataric and she also learned from us. She was glad to have the insight afforded by the literature and videotapes on the cochlear implant we gave her. Ana learned from all of us, and we learned a lot by watching her progress. Professor Zlataric's great experience and our knowledge and monitoring of Ana's development both contributed to her progress. Professor Dunja and Ana's systematic efforts resulted in a picture book that was also a journal of work and development. Through detailed collages of characters making up a story in the workbook and through repetition and varying the story situations, speech and linguistic forms were developed. This was just one method of rehabilitation, but it gave the most apparent results.

What had been invested into rehabilitation prior to the surgery was now yielding a double return, and plenty had been invested. A new phase of work began. Ana was more mature and the cochlear implant facilitated more rapid and visible development. Even those who did not believe in this technology gradually began to acknowledge this.

Ana and Dr. Drežančić

On weekends, we would work with Dr. Zora Drezancic, who frequently visited Croatia. Initially, she had to adapt to Ana's new abilities and then she taught her concrete exercises for formulating individual phonemes, syllables and words. She had her doubts about the efficiency of the cochlear implant, but they began to dissipate and she resumed her work with Ana with a new zeal. It seemed that this work gave her, in her advanced age, fresh energy. She actually transferred this energy to Ana whom we frequently found repeating the learned exercises on her own. The exercises were designed to provide a stimulus, correct mistakes and compile vocabulary. Lately, we have been working on grammar, namely the past, present and future tenses, using the picture books that Dr. Drezancic had printed in Italy.

We also worked using the methods outlined on videotapes by Professor Warren Estabrooks and we kept in touch with the John Tracy Clinic and used their correspondence courses and the videotapes they sent us for free. Our only obligation was to submit progress reports to them and they gave further instructions according to the reports. We also distributed the videotapes and other materials to everyone who was interested in them. Lately, since both Ana and we were busier than usual, we neglected this practice and we also have due progress reports to send to the John Tracy Clinic.

We frequently exchanged experiences via email with Lisa and Danny, whose daughter Miranda was operated some time before Ana. We encouraged each other, compared rehabilitation results and set our expectations accordingly. The opportunities and the support by the state that were available to them were beyond comparison to what we had.

Ana and Professor Alfirev

Just before summer, we started to look for and found a young speech rehabilitation specialist who used to work for SUVAG and was interested in working with children with cochlear implants. This young lady, just like most other rehabilitation specialists, had no experience with cochlear implants, but she was very ambitious. We provided her with the most recent publications on rehabilitation and the cochlear implant that did not seem to raise much interest in others. Once she studied the literature and made preparations, she would start to work with Ana. Thus, from autumn 1999, Ana began to have lessons at the private speech rehabilitation office of Mihaela Alfirev twice a week. It was an interesting coincidence that Ms. Alfirev attended a conference on the cochlear implant in Berlin where she met Professor Estabrooks who suggested that she come to Canada for advanced training.

Team Work and Regular Kindergarten

As of autumn 1999, we enrolled Ana in a newly established group for the rehabilitation of children with cochlear implants at SUVAG. In order to enroll Ana in the group, we had to undergo the so-called categorization through the Social Work Center, in accordance with the Rules on the Structure and Work of the Expert Team for the Implementation of Social Welfare Rights. The application for disability allowance was also subject to this. This was an unpleasant experience that gave us the (correct) impression that no one wanted to inform us of the rights our child was entitled to. Nevertheless, we went through the entire, unnecessarily long, procedure. It was particularly frustrating that the criteria were not equal in all centers, so you might be able to enforce the rights of your child, while the parents of a child with the same characteristics, who happened to live in another district, could not.

Matija, Antonija, Dominik and Ana

The children on various levels of speech and hearing development were gathered at daily group sessions lasting for three hours (i.e. four 45-minute lessons). Virtually all attendees were at the very beginning of the rehabilitation process and were aged two through five. Professor Mirjana Kutlesa, or Mia, as we called her, lead the group with a lot of enthusiasm and kindness and Ana soon grew to like her. Within each group session, musical and rhythmical exercises were performed, as well as a short individual rehabilitation lasting about 15-20 minutes. Since the institution had not established a program for children with cochlear implants, Professor Mia gradually researched and developed rehabilitation methods based on the experience she had gathered and the development possibilities of children with implants.

The group sessions raised new issues. The sessions were scheduled in the morning one week and in the afternoon the next week, which completely rearranged our pace of living. For morning sessions, we took Ana to SUVAG at 9 a.m. and picked her up at 12:30. It meant that the morning was completely lost for the one escorting her. The afternoon sessions were even worse. We brought her in around 1 p.m. and picked her up at 4:30 p.m. This was the time when a three-year-old should have lunch and take a nap. This kind of schedule was unfavorable for the child's orderly and healthy lifestyle and it was hard on the family too. How much she would benefit from the rehabilitation work under such conditions was anyone's guess. It would be organizationally, financially and legally impossible to take the child to another kindergarten before or after the group sessions. The child cannot attend two programs at the same time, namely the SUVAG program and the regular kindergarten program, because the city's welfare institutions would not cover the expenses and we could not fit it into our schedules anyway.

This was the point where the institutional discrimination began. Our child was discriminated, and so were the other children with cochlear implants. You knew that the program and the working conditions were not suitable for your child's needs, although these needs can be met and it should be a priority, but the institution's commercial interest seemed to be more valued. We have seen some rooms being used by elite kindergartens for hearing children, with programs in English and German, both in half-day and whole-day shifts. The very same institution claimed to have no space for the whole-day kindergarten for our child. When a group of parents demanded equal conditions for our children, the institution said that, as a big favor to us, they would get a van to take our children to another kindergarten. They did not even realize how discriminating this was.

We also had our first encounter with cruel and immature remarks by the children from the elite kindergarten. We were insulted when they started to yell "dummies" or "deafies" at our children, without any reaction from the staff who did not see fit to have a talk with their parents. They all pretended that nothing was happening.

Since we could still not get insight into the working programs or any hypothetical or empirical projection of Ana's development, we designed supplementary lessons ourselves. In addition to the lessons with the speech rehabilitation specialist, we occasionally organized lessons with Aunt Zora during weekends and we also decided to enroll Ana in a regular kindergarten.

We decided to take Ana to SUVAG group sessions only in the mornings, namely every other week and to have her attend the regular kindergarten for rest of the time. My church allowed us to enroll Ana in their Evangelic Kindergarten, since we could not legally enroll her in any other kindergarten while she was attending SUVAG. The regular kindergarten seemed like an important factor, not only because of better scheduling, but also because of essential aspects of development that were not covered by SUVAG's program. In the regular kindergarten, she had direct interaction with the hearing and speaking children and could adopt their speech and communication models. We wanted her to develop a need for spoken communication while playing with her chatty peers. The time spent in the kindergarten made her life richer and better structured. Although German was the language used at the kindergarten, it nevertheless contributed greatly to her development. She did not get a targeted, guided program like in SUVAG sessions, but it was still of great benefit. With the additional lessons, this was the right solution.

We noticed that during weeks that she spent at the regular kindergarten she used fewer gestures in communication, while during SUVAG weeks, the use of gestures increased. This motivated us to keep taking her to the regular kindergarten. Since we were very disciplined about not using gestures in communication, we did not like seeing her develop this habit, because the use of gestures takes the least effort and can steer the child away from verbal communication.

We carefully monitored her reactions, to make sure she was not overloaded. Ana liked the whole rehabilitation process: the individual sessions with Aunt Dunja (Professor Zlataric) before and after the surgery, group sessions with Aunt Mia (Professor Mirjana Kutlesa), working with Aunt Barbara and Aunt Kristina at the Evangelic Kindergarten, numerous individual lessons with Aunt Zora (Dr. Drezancic) at our home, before and after the surgery, and lessons with Aunt Mihaela (Alfirev). Although this seemed like a big workload, Ana took it all with great, childlike enthusiasm.

At one point, we became over-ambitious and enrolled Ana in dancing classes, in order to develop her sense of music and rhythm, as well as her sports abilities. This was too demanding a schedule for her. She did not like it, although the dancing lessons had their impact. Even today, six months later, she sometimes puts on her dancing attire and does the dancing exercises, repeating the teacher's instructions "toes – heel". She likes dancing, but enough is enough.

In spring, we announced that we would quit the group sessions, although they were recommended for the next school year starting from autumn 2000. In addition to all of the organizational problems, we were not happy with the program. SUVAG did not implement the integration model for education and rehabilitation, which we considered essential to our daughter's development. She had no role model among her peers, nor was she challenged by classmates who could do more than she. Ana had no contact with children who could hear and therefore had spoken skills adequate for their age. We had to find another place that could offer this. Ana missed Aunt Mia who worked with the children with great diligence and understanding, and so did we. She often spoke of her classmates from SUVAG: Ema, Emina, Dominik, Ivona and Magdalena, as well as Antonija and Katarina who left the group before her. When attending individual rehabilitation, we often paid a short visit to the group, so she could keep in touch with these children.

Ana started to attend regular kindergarten in the autumn of 2000, which has resulted in a better and richer family life, thanks to a more favorable schedule, as well as better conditions for the development of speech and communication skills, due to a more stimulating environment. We still go to SUVAG, but only to the individual rehabilitation sessions.