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Our Story of Naomi

Naomi is our first child. She is almost six years old. In July last year Naomi became sick for 3 months during which time, she and her family (including the extended family) went through hell. Now I know that "hell" is relative.

Naomi was born with a rare chromosomal abnormality, which has resulted in global developmental delay. The most acute aspect of the delay is a lack of articulated speech. The professional view is that she has the speech level of a two and a half-year-old. Other notable aspects are her obsessive behaviour (such as a fetish for people's keys), repetitive habits like pretending to go shopping, and a deep lack of concentration. Visible aspects of her disability are her low set ears, small, hooded eyes, poor upper body muscle tone, poor gait and odd little physical deformities. She has deep dimples on her shoulder blades where it seems that the skin is joined to the bone. She seems to have an extra vertebrae in her backbone so that her coccyx almost pokes through her skin.

Although her intellectual development is significantly delayed, Naomi's abilities vary. She has a great memory for places and directions. She knows the route to all places we regularly visit and she remembers emphatically where she (and others) have left a pen, a key or glasses. She also remembers people very clearly and often looks through our photo albums and points out all the people she knows. On the other hand, she has a very low comprehension of abstract toys, such as playing with blocks or doing jigsaw puzzles. These things have never held her interest. She also has a very basic level of imaginative play. She sleeps well but has always woken extremely early and finds it difficult to entertain herself. She can be very demanding.

Naomi loves adult company and, until recently, would shun other children's company. She loves to do adult things, such as writing a shopping list, doing the dishes, folding the clothes or pretending to go to work. She loves to sit with the adults when they visit and will mimic adult hand actions and patterns of speech. In the last year, she has watched other children play with greater interest and will often play with their toys when they have moved on to other things. She will wrestle with her brother now whereas she would not have done this in the past. When Naomi started teasing her brother, we saw this as a significant development.

In the scheme of things Naomi's disability is mild compared to other children we know. She is physically healthy, is mobile, and generally has a bright nature and even temperament. However between July and October last year we became greatly concerned about what was happening to Naomi and much more aware of how much harder our lives could be.

During this 3 month period Naomi's character changed dramatically. For days at a time she was constantly distressed, agitated, and completely unfocussed. She wanted to put her head down, as if this provided some sort of relief. She was awake for a large part of the night, banging her head against things, and continually crying. Naomi was like a deranged animal. We were unable to go out other than to drive around until she fell asleep exhausted, and in the end I found the only thing I could do at home was to let her wander around after me in the house or garden, wailing. Needless to say she stopped going to Kinder and Early Intervention. We were so worried. Not having any medical knowledge and given her medical history of 2 years of intermittent unexplained apnoea, we were terrified that something had shifted in Naomi's brain.

Naomi was admitted to the Royal Children's Hospital and as always we received the best attention. She had all the possible tests eg for meningitis, infection, etc, but in the end it was suggested that it was behavioural. Naomi was prescribed a neuroleptic, Melleril (in this case to treat agitation). Although this seemed to have a miraculous effect on the first occasion and we had our old Naomi back for a few days, it never worked again and only made her slow and sleepy. She remained distressed and showed the same symptoms as before. We started seeing a child psychiatrist at the Children's Hospital. Although this doctor was sympathetic she could only suggest that Naomi might be "behaving" this way because she could not communicate her feelings of pain resulting from a previous bad bout of flu; she had had a difficult life with lots of medical intervention, etc. We continued to believe this was not the right answer. Naomi seemed to be so sick and so troubled – something was bothering her greatly.

A friend who works with adults with disabilities suggested looking in Naomi's mouth, as he believed teeth/mouth problems are often the source of dramatic change of behaviour in people who cannot communicate. He told stories of people in similar circumstances who had had significant investigations into their dramatically changed behaviour. Somewhere along the way it was found that tooth decay or other mouth problems (such as a mouth-guard stuck in the throat) were the cause of this behavioural change.

During our next stay at the Children's Hospital (more wild behaviour from Naomi), Michael looked in Naomi's mouth while she was screaming and noticed a black patch on one of her molars. It had always been difficult to look in Naomi's mouth as she would pull away or clench her teeth. Once she was released from hospital we saw our family dentist who also had trouble looking in Naomi's mouth but believed that the black spot signified decay.

The only way our dentist could do a more thorough investigation was to put Naomi under a general anaesthetic. We always feel sad when Naomi is required to have general anaesthetic, particularly in a case like this when non-disabled kids generally do not require such severe intervention. However in this case we felt some relief as we were eliminating another possible cause of Naomi's strange behaviour.

In early October 1999 our family dentist operated on Naomi for nearly 2 hours and discovered that she had two almost rotten teeth – one was abscessed. The dentist repaired both teeth and within a few hours we had our old Naomi back again. People who know and work with Naomi could not believe the change – she was so happy and so much more focused. Other than the usual temper tantrums we have not seen 'wild Naomi' since. We have also discovered that we can access the dental unit at RCH and have moved her treatment there. She recently had another operation which resulted in extraction of one of the previously troubled teeth and coating and capping of her teeth. Naomi's teeth are 'unnaturally' bad. This is not the result of her genetic condition but rather that I was probably sick whilst pregnant. (Funnily enough this was good news as we have always put all of Naomi's problems down to her chromosomal abnormality!)

We are also attempting to give Naomi the means to better communicate feelings of physical pain, by asking her questions like 'Does it hurt?', 'Where does it hurt?', and increasing our and her knowledge of sign language.

We also better understand the need to trust in our own intuition that things may not be right. We always felt that Naomi was sick, that it was much more than a behavioural problem. It is reassuring to know that our instinct was right. And it is fantastic to know Naomi is again feeling well in herself!

Sheena Mathieson and Michael Nelthorpe
NoticeBoard
July 2000