4.7 In conclusion
5.1.2 Naming the chronicles
5.1.2.2 Chronicle 2: Tracking the milestone
As parents, we waited with much anticipation to welcome a smile-even half a smile,
vocalisations of any kind, gestures and the arrival of first words as we tried to track whether our child would be able to engage in any form of meaningful communication. This
development was delayed and the wait was so worth it when we heard the first word that sounded like ‘dada’ when she was eight months old. From my incidental reading on the
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subject I learnt that language development in children with DS is quite varied, and it is important to consider expressive and receptive language separately.
In Tiara’s case the progress on both was slow and they developed at different rates. On beginning with speech therapy as early as possible, we had raised expectations as she acquired and developed her language skills. The intervention programmes, while they developed her-albeit slowly-did not provide for rapid or substantial progress because the interval of two weeks between the first session and the next was wide. Either the interest in the task was limited or the technique used in the practice at home programme was not properly administered and monitored by my husband, the care-giver/s or myself when we worked with Tiara during the day.
It didn’t occur to us nor was it recommended to us by the regular paediatrician, Dr Karim whom we visited so frequently in her infancy, that we should have had her hearing tested. It was only in 2005 that we were advised by him to take her to an Ear, Nose and Throat (ENT) specialist because Tiara did not breathe properly during sleep and we were concerned that this was making her restless and disturbed her sleep, especially at night. The problem was thought to be her adenoids.
He subsequently requested a hearing test when he examined her ears and saw the buildup of wax in both her ears. He asked us if she could hear us well. We were for the first time alerted to the behaviour patterns preceding this comment and shared incidents with the specialist.
For example, when she transferred the telephone earpiece from her right ear to her left . He recommended an auditory assessment. The speech discrimination test designed for typical children couldn’t be administered without modification. Tiara did not necessarily have the vocabulary to identify all sound that would be played to each ear, one at a time showing that to ‘test’ her hearing using this traditional methods was inappropriate.
It was resolved to do a “bone conduction audiogram”, through which the level of hearing is measured. This was not conclusive as Tiara needed to be absolutely still during the
procedure. She was 8 years old.
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Her age and weight were factors taken into consideration to determine the strength and dose of medicine to be administered. The dosage didn’t work. She was wide awake and started to show her restlessness by tossing and resisting our touch as she sensed the unusualness with which she was handled.
Finally it was suggested that we have a procedure (under general anaesthetic) of inserting grommets into her ear at the same time that her adenoids would be removed. The hearing test was repeated after two weeks. The objective of inserting the grommets was to amplify the sound level she was able to hear. Whilst her sleep pattern improved after the adenoids were removed the result of the repeat auditory test concluded that Tiara is profoundly deaf in her right ear, and has 90% hearing in the left ear. Prior to this test, it seemed that she
compensated for the hearing loss by adapting her body posture to listen when she was spoken to. She often wanted to look at our face when we spoke and often read facial expressions to support what she thought she heard. The speed of our speech also affected her understanding.
We spoke normally. To her, lip reading was challenging. Only then did we recall that she didn’t sustain any conversation telephonically and she swopped the hand grip of the telephone from right to left. This was the reason. She couldn’t hear!
I was angry at the school teacher who worked daily and extensively with her yet did not identify this serious impairment. The hearing test report was forwarded to the school and the recommendation of re-seating her to be on the right side of the teacher’s teaching posture was effected. The greater concern is that the teachers to whom the information was available did not read the progressive historicity report when receiving her from the previous year’s teacher and different teachers had to be reminded each year of the report. It is not possible to know now how she would have progressed had she been diagnosed earlier. I was more regretful that I didn’t use sign language to equip her to communicate with us. If we did she might have alerted us through more frequent signing than vocalising that she had hearing impairment. I was utterly disappointed at the delay in this diagnosis, though who is to be blamed I cannot say. However, I accept partial blame because the responsibility was also mine.
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Research conducted by Shott, Joseph and Heithaus (2001) within the DS population estimated that 38–78% of children with DS have a hearing loss, a three times greater risk than children with other developmental delays. Chronic otitis media as he explains it to me, is a primary cause for hearing impairment and children with DS are at increased risk due to facial structure differences related to DS. The anatomy of the midface specific to children with DS causes the child’s eustachian tube to be more cylindrical in shape and smaller in width and predisposes the children to chronic ear disease. In addition, stenotic ear canals can cause cerumen
impaction, and hypotonia can leave the tube more likely to collapse and restrict air flow to the middle ear causing buildup of middle ear fluid and chronic otitis media (Shott, 2006).
CWDS experience cognitive delays, with language identified as one of the most impaired domains.29 It stands to reason that language opportunities provided within the environment can influence a child’s facility in development of language (Price, Roberts, Vandergrift &
Martin, 2007). For that reason, parents should be provided guidelines of best practice to boost the opportunities for their children to learn language (Roberts, Chapman, Martin &
Moskowitz, 2008).The relationship between hearing ability and support of speech and language development has been emphasised by researchconducted by Moeller, McCleary, Putman, Tyler-Krings, Hoover and Stelmachowicz (2010) in a longitudinal study with four children focusing on “ late-identified mild-moderate sensorineural hearing loss” (p. 53).
A similar focus is available of study done by Hendershott, Woods, Jackson and Lakey (2012).
They state that children with developmental delays and disabilities, such as Down syndrome, may develop communication skills at a slower rate as compared to their typically developing peers. As noted above, CWDS present increased possibility for communication deficits, especially with expressive language, and these language deficits can be further affected by hearing (Shott, 2006). Receptive language is described as the skill to simultaneously listen and comprehend language conventions. Expressive language expands to include external
communication, by means of language. It places greater importance on having to know if a child has impaired hearing as this process will be affected.
29 http://digitalarchive.gsu.edu/cgi/viewcontent.cgi?article=1095&context=psych_theses
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Language is one of the most impacted abilities for a CWDS, with deficits in expressive language, vocabulary production, and speech intelligibility (Kumin, 2012). Previous research found that competency in expressive language skills amongst CWDS is less than in receptive language skills. Ypsilanti, Grouios, Alevriadou, and Tsapkini (2005) conveyed the notion that CWDS are under-developed in aspects of expressive language, whereas their receptive
vocabulary and comprehension are less impaired. They stated that children with DS produced significantly more errors on expressive vocabulary than mental age-matched controls.
For CWDS, expressive language generally progresses through the same milestones as typically developing children but at a delayed rate; the period of canonical babbling is often extended, with first words delayed. It is not uncommon for a child with DS to produce his or her first words at 21 months or later (Abbeduto, Warren & Conners, 2007). In another study, Berglund, Eriksson, and Johansson (2001) found overall a 36-month-old child with DS paralleled the language performance of a 16-month-old typically developing child, and the language development of a 48-month-old child with DS was close to a 20-month-old typically developing child’s language development.
As parents we waited eagerly for our baby’s utterance of her first word. Whilst
acknowledging the possible imperceptibility of receptive language we focused on her response to the sound of our voice, which is one of the ways the beginnings of receptive language is indicated. When she cooed in response to a familiar voice, we knew she was commencing with expressive language. This signalled that she was starting to appreciate the usefulness and importance of communication.