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
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