|
|
|
|
Part 2: A deaf child in the family 2.1. Having a baby My pregnancy with our first child was an exciting time of great anticipation and expectations. My husband and I looked forward to life with a child and to enjoying the various milestones that babies go through. We also looked forward to seeing our child develop into a bilingual person within the rich mixed linguistic and cultural environment of our family. On October 1989 our daughter Shauna made her entry into the world. She was perfect: good weight, two arms and legs, ten fingers and toes, beautiful dark hair. We were over the moon and took her home. A week after Shauna was born I suspected that she might not hear properly but was told by our health visitor that I was an over-anxious first time mother and that there was no reason why she should be deaf as we had no deafness in the family. We were urged not to worry and to wait for the routine hearing test that all babies undergo at the age of 8 months. We felt relieved. So my husband spoke English to her, played and danced with her on music from the TV and radio. I spoke Italian and sang Italian nursery rhymes to her, read Italian books with her. As the months went by, my suspicions grew. I remember the day at that stage when I actually formulated the word “deaf” and how it made my stomach turn. The thought that she may not be able to hear terrified me. I had a vision of deaf people almost as zombies - living in a distant, silent, slow world – a world that had nothing in common with mine. My husband soon came to share my suspicions. Life became very stressful as we developed the habit of constantly testing Shauna to see if she would react to sounds, and as we noticed how differently she seemed to develop compared to other babies. 2.2. Experience of the diagnosis of deafness 2.2.1. Fears and ignorance Shauna failed her routine hearing test. A second test suggested a moderate hearing loss. We were relieved that it was only moderate. Emphasis at that stage was on her ability to hear and not on the hearing loss and we went home reassured. We felt confident that with hearing aids she would be able to speak and even be bilingual in Italian and English. I clearly remember my feelings and the conversation that we had on the way home. We felt happy, as though the situation was resolved. We were then referred to the hospital for a more elaborate test (the brain stem test – this involves putting electrodes on the child’s head that register the sound input to the brain on a computer screen). This test, we were told, would give a more accurate picture of what Shauna could hear. In the hospital testing room Shauna was declared “severely hearing impaired”. We were told that her hearing was impaired severely enough to impede normal speech development. Impressions for hearing aids moulds were immediately taken whilst I was holding her in my arms in tears. Then the audiologist said something that was both comforting and damaging. He said that it was fine to cry, that we were grieving the loss of the child we thought we had, that it was like losing someone through death. At the time it was comforting because it was nice to have somebody offer sympathy and compassion. Today with hindsight I feel that these words were damaging because they reinforced our negative idea of deafness and that they contributed to the period of depression that we suffered afterwards. We went home that day, with a new baby. Our hopes and dreams were shattered. We just looked at her, looked at each other and cried. We were devastated. There was something “wrong” with our beautiful baby. All we could think about was that she could not hear. We were ignorant and frightened. We felt that we could not communicate with her. We were worried about her future. Would she be able to get a job? Would she get married? It sounds stupid now but at the time we had never met a deaf person and when it came to deafness we did not have a clue. I remember feeling really depressed and taking long walks alone, or with Shauna. I would look enviously at all the other parents "talking" to their children. The fact that Shauna could not hear my voice was very painful. I felt robbed. We wondered what had gone wrong, what we had done to deserve this. Had I taken any medicine in pregnancy that could be responsible, could it have been a result of the many ultrasound scans that I was given while being monitored at the end of the pregnancy because of slight hypertension? It must have been my fault. Was there anything that we could do now to restore her hearing? This could not be real, perhaps I was going to wake up the next day and she would hear. This was the lowest point. 2.2.2. Isolation The birth of a baby usually brings families closer and often the baby’s parents become closer to their own parents. In contrast becoming the parents of a deaf child creates a distance with their family. This was a particular issue for me as Shauna was the first grandchild on my side of the family. I had been living abroad for a few years and I felt that Shauna’s deafness jeopardised the opportunity for my family to get closer again. Discovering that Shauna was deaf was very isolating. Our families asked us questions to which we did not have any answers. This was particularly difficult for me as I had to explain everything in Italian and I was learning all the jargon in English. The distance between Italy and England prevented my family from seeing Shauna and reinforced their mental vision of her as disabled. We also had to cope with the reaction of our respective families. Shauna’s grandparents, uncles and aunts were as devastated as us by the news and experienced the same emotions as us. So we tried to soften the blow for them whilst desperately trying to cope with our own emotions. We could not share our despair. They could not support us. The same happened as regards our friends. They were having babies too but our experiences of parenthood did not match. We were faced with their happiness and their “normal” babies. Our baby was abnormal. Some unwittingly made things worse by sharing our grief, others tried to make us feel better. None of them knew anything about deafness. They did not understand what we were going through. We could not share our despair with them either and they could not support us. Finally we could not share our feelings with the professionals that came into our life either as we soon realised that their perception of Shauna was different from ours. |
Back to MLEDC
homepage |
