Communication in the Early Stage of Language Development in Children With Charge Syndrome

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http://jvi.sagepub.com/content/26/1/24The online version of this article can be foun d at:

DOI: 10.1177/0264619607083833

2008 26: 24British Journal of Visual Impairment Sini Peltokorpi and Kerttu Huttunen

CHARGE syndromeCommunication in the early stage of language development in children with

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Communication in the earlystage of languagedevelopment in childrenwith CHARGE syndrome

SINI PELTOKORPI AND KERTTU HUTTUNENUniversity of Oulu, Finland

AB ST RACT CHARGE syndrome is characterized by multiplephysical abnormalities, and impaired vision and hearing. In thispilot study, communication in the early stage of language devel-opment in three one- to eight-year-old children with CHARGEsyndrome was explored using video recorded free-play interac-tion sessions and a parental questionnaire. The children mainlyused gestures, but also vocalization and some signs. According tomethods based on the Tait Video Analysis (2003) and theCommunicative Intention Inventory (Coggins and Carpenter,1981), the children used shared attention with their mothers mostof the time, with initiations comprising almost half of all theircommunicative expressions. Intentional communication covered15 to 18 per cent of the communicative acts. Suggestions for howindividual characteristics of communication can be used inparental guidance are presented in the discussion.KEY WORDSCHARGE association, deaf-blindness,hearing impairment, intentional communication,

pre-verbal, visual impairment

INTRODUCTIONA person with CHARGE syndrome has a non-random clustering of con-genital anomalies. The acronym CHARGE is derived from the first lettersof words referring to the major characteristics of this syndrome:coloboma, heart defect, choanal atresia, retardation of development or

growth, genital anomalies and ear anomalies (which often cause hearingimpairment). Typically, four of these six major symptoms have beenrequired for a diagnosis of CHARGE. Blake and her colleagues have

THE BRITISH JOURNAL OFVISUALIMPAIRMENT

Copyright 2008 SAGE Publications(Los Angeles, London, New Delhiand Singapore)Vol 26(1): 2449DOI: 10. 1177/0264619607083833ARTICLE

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classified the characteristics of CHARGE into major and minorcategories. According to them, the diagnosis can be based on four majoror three major and three minor characteristics (Blake et al., 1998). Manyother anomalies have also been identified, and the number and natureof different deficiencies belonging to this syndrome is changing. Theseverity of these anomalies can be highly variable (Davenport et al.,1986; Lewis and Lowther, 2001; Tellier et al., 1998). Despite the occa-sional occurrence and often obvious disparity between the genotype andphenotype, recent data support genetic etiology (mutation of a CHD7gene on chromosome 8) of this congenital syndrome (Vissers et al.,2004; Jongmans et al., 2006). The prevalence of CHARGE is estimatedto be between 1/10 000 and 1/15 000 births (Lewis and Lowther, 2001).Many medical reports have been published on this syndrome, but very

little is still known of the communication of persons with CHARGE.

Physical impairments in CHARGEAbout 80 to 90 per cent of persons with CHARGE have congenitalcoloboma of the eyes (Blake and Brown, 1993; Miller et al., 2004;Russell-Eggitt et al., 1990; Tellier et al., 1998). In the majority of cases itcausesvisual impairment . Blake and Brown (1993) found that 75 per centof children with CHARGE (n = 36) had visual impairments which caused

learning difficulties. Additionally, persons with this syndrome can alsohave microphthalmia (having very small eyes) or even anophthalmia(having no eyes) (Robb, 1994).Hearing impairment , often associated withCHARGE, can be of sensorineural, conductive or mixed type (Shah et al.,1998; Tellier et al., 1998; Thelin et al., 1986).Developmental delay is alsovery often a part of CHARGE (Davenport et al., 1986; Hall, 1979; Oleyet al., 1988; Pagon et al., 1981). The developmental delay has beenrecently considered to be caused by physical and sensory impairmentsrather than being a congenital condition as such (Blake and Brown, 1993;Lewis and Lowther, 2001).

Communication in children with CHARGEBefore a typically developing child begins to use words in communica-tion, he or she already communicates in many ways during the prever-bal stage of language development. These preverbal skills include theuse of eye contact, shared attention, imitation, play, turn-taking, the useof gestures together with vocalization, and intentional communication.These skills have a crucial impact on later language development. Forexample, shared attention (Laakso, 1999; Morales et al., 2000a; Moraleset al., 2000b; Mundy and Gomes, 1998), intentional communication

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(Bates et al., 1979; Calandrella and Wilcox, 2000; Laakso, 1999) andsymbolic play (Bates et al., 1979; Laakso, 1999) have been found to pre-dict subsequent verbal language development.

Children with combined sensory impairments face many challenges incommunication already during the preverbal stage of language devel-opment. Every impairment or deficit has its own effect on early interac-tion between the child and the caregiver, magnifying the combinedeffect. Any combination of sensory and other impairments also makesit more difficult for the child to use compensatory means of communi-cation. Therefore, the communication problems of children with multi-ple impairments are often more severe than those of children with ahearing or visual impairment or a developmental delay alone.

Until recently, hardly any reports have been available on the commu-nication of children with CHARGE. In the few existing earlier publica-tions, researchers noted great variation in the communication skills of these children (Angelman, 1961; Goldson et al., 1986). Consideringsome of the cases described in the literature, poor communication skillscan, at least partly, result from a non-ascertained hearing impairmentand lack of intervention.

Many children with CHARGE have to spend long periods in hospitalafter birth (Souriau et al., 2005). The childs poor medical state and thenon-home-like circumstances in the hospital can hamper the earlyinteraction between the child and the parents. First smiles emerge laterin children with CHARGE than in their typically developing age-peers,at about the age of three and a half months (Lewis and Lowther, 2001).Moreover, facial paralysis, often a part of co-morbidity in this syn-drome, can cause problems in communication because it makes it dif-ficult or even impossible to use facial expressions.

Thelin and Fussner (2005) surveyed parents of children with CHARGE.They found that of the 27 children (aged 3 to 12 years) and a 27-year-oldyoung adult studied, 17 used symbolic communication (11 used spokenlanguage, and 6 used sign language). The rest of the children (N = 11)communicated in a non-symbolic way primarily using gestures. It wasfound that the ability to walk independently was related to communica-tion skills. Thelin and Fussner hypothesized that if a child is able to walkindependently, he or she can maximize communication efficiency bymoving him/herself to an appropriate distance from the communicationpartner, i.e. mobility is needed to overcome impairments of hearing andvision. Autistic disorder, autistic-like behaviour and autistic traits have

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frequently been found to be associated with CHARGE (Hartshorne et al.,2005; Johansson et al., 2006; Souriau et al., 2005). Children with CHARGEseem to have better language and communication skills (e.g. use of eyecontact and touch) than children with autism, but express more stereo-typical behaviour (rocking) than deaf-blind children.To our knowledge, all the reports published on the communication of children with CHARGE are based on surveys (parental questionnaires)or descriptions of clinicians. Both qualitative and quantitative data fromgenuine interaction situations are also needed to complement ourknowledge. The present article deals with the characteristics of com-munication in three children with CHARGE. Information was gatheredfrom both parental questionnaires and video recorded play sessions

between the mothers and their children. Three main research questionswere determined:

1. What are the features of communication in the early stage of lan-guage development in the three children with CHARGE (differentcommunication modes and use of initiations and eye contact)?

2. What are the characteristics of intentional communication in thechildren studied?

3. What is the applicability of the two research methods selected to the

examination of the characteristics of early communication?METHODSParticipantsThree children with CHARGE participated in the study with their moth-ers. These children had adiagnosis of CHARGE and were in the pre-verbal language stage . The parental questionnaire was used to gatherbackground information on the children. This was necessary for study-ing each child as an individual case, and to supplement the videoanalysis. The participating children were 1, 3 and 8 years old. The char-acteristics of the three children are presented in Table 1.

Physical impairments and characteristics of communication asreported by the parentsAll the children had coloboma of the eye, which had caused differentdegrees of visual impairment. All the children also had a heart defectand a developmental delay but, at the time of the data collection, onlythe oldest child had been diagnosed with a developmental delay.Similarly, hearing impairment and ear anomalies were part of the


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syndrome in all three children. The physical impairments of the childrenare presented in Table 2.

Table 3 summarizes the information on the communication of the chil-dren as described by their parents. The youngest child (Child 1) did notuse any words or signs, whereas the two older children (Child 2 andChild 3) used a few signs in their communication. The communicationmodes used in the families were highly variable. Signs were used inevery family, however. Success in making contact with the child wasvariable, with the children using different ways to express themselves.

ProceduresVideo recorded play sessions served as the main method of data collec-tion. Child 1 and Child 2 were recorded with their mothers during a reha-bilitation course and Child 3 in kindergarten. The recordings lasted 15 to30 minutes, depending on each childs concentration ability. The contextchosen was free play with an identical set of toys for all motherchildpairs. Before the recording sessions all the mothers were asked which toystheir children liked to play with. This information was then used for select-ing the set of toys for the recordings. The mothers were asked to play withtheir children the way they normally do. They were also told that theywere allowed to use all the toys in the set or just some of them.

Table 1. Characteristics of the children studied as reported by theparents

Child 1 Child 2 Child 3

Sex Female Male FemaleAge 1 year 4 8 years 4 3 years 9

months months monthsAge at the CHARGE Age of 10 About 23 At birthsyndrome diagnosis days months of ageThe birth order of III/4 III/5 III/3the child/ number ofsiblings

Length of longer Six months Six and a half Sevenhospitalizations after birth. Other months after birth. weeksshorter periods Other shorter afterlater. periods later. birth.


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T a b l e

2 .

C h a r a c

t e r i s t

i c s o

f C H A R G E s y n

d r o m e

i n t h e

t h r e e c h

i l d r e n s t u

d i e d a s r e p o r t e

d b y

t h e p a r e n

t s

C h i l d 1

C h i l d 2

C h i l d 3

C o l o b o m a o f

t h e e y e

+

+

+

L o c a t i o n o f c o

l o b o m a

R e t i n a

O p t

i c n e r v e

R e t i n a

A g e a t a s c e r t a

i n m e n

t

1 0 d a y s

A b o u t

2 m o n

t h s

1 w e e

k

o f t h e v i s u a l

i m p a

i r m e n

t

V i s i o n

L o w v i s i o n , s

e v e r e

L o w v i s i o n , m

i l d v i s u a l

S e e s u p

t o 6 0

8 0

v i s u a l

i m p a

i r m e n

t ( 0 . 1 >

i m p a

i r m e n

t t h a t d o e s n

t

c e n t

i m e t r e s . V

i s u a

l f i e l d

v >

0 . 0 5 ) . S e e s w e l

l u p

c a u s e p r o b

l e m s i n s i

d e

i s u p

t o 6 0

8 0

t o 2 0

3 0 c e n t

i m e t r e s .

t h e

h o u s e o r

i n c l o u

d y

c e n t

i m e t r e s b e l o w

D e t e c

t s m o v e m e n

t s

w e a

t h e r o u

t s i d e .

e y e

l e v e

l .

a l s o

f r o m a

d i s t a n c e .

B l i n d e d b y s u n l i g

h t .

V i s u a l a i

d s

E y e g

l a s s e s

( a b o u t

A n t

i - d a z z l e g l a s s e s

H a s e y e g

l a s s e s

b u t

2 h o u r s /

d a y )

d o e s n o

t u s e

t h e m .

H e a r t

d e f e c t

+

+

+

C h o a n a l a t r e s i a

+

+

R e t a r d e d

d e v e

l o p m e n

t

+

+

+

D i a g n o s e

d

N o t e x a m

i n e d .

+ D e v e l o p m e n

t a l

N o t

d i a g n o s e

d .

d e v e l o p m e n

t a l d e l a y

a g e

1 - 2

y e a r s .

G e n i t a l a n o m a l

i e s

+

E a r a n o m a l

i e s /

+

+

+

h e a r i n g

i m p a

i r m e n

t

( c o n t i n u e

d )


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T a b l e

2 :

( c o n

t i n u e

d )

C h i l d 1

C h i l d 2

C h i l d 3

A g e a t a s c e r t a

i n m e n

t

A b o u t

t w o w e e

k s .

A b o u t

t w o m o n

t h s .

S i x m o n

t h s .

o f t h e

h e a r

i n g

i m p a

i r m e n

t

U n a i d e d

h e a r

i n g

l e v e

l i n

A b o u t

4 0 8

0 d B

A b o u t

4 0 d B

A b o u t

4 0 d B

p u r e

t o n e a u

d i o m e t r y

S p e e c h r e c o g n

i t i o n

C a n n o

t h e a r s p e e c

h

C a n n o

t r e c o g n i z e

R e c o g n

i z e s s p e e c

h ,

s p o k e n w

i t h n o r m a l

s p e e c h .

a l s o w

i t h o u t a

l o u d n e s s .

h e a r

i n g a i

d .

U s e o f a c o c h

l e a r

W i l l s o o n

h a v e a

H e a r i n g a i

d s i n c e

t h e

H e a r i n g a i

d s i n c e

i m p l a n t o r a

h e a r

i n g a i

d .

a g e o f

t w o y e a r s .

t h e a g e o f s i x m o n

t h s .

h e a r i n g a i

d

U s e s

i t 1 0 h o u r s

U s e s

i t 6 8

p e r d a y .

h o u r s p e r d a y .

M i d d l e e a r

F r e q u e n t

R e c u r r e n

t , e s p e c i a l

l y a t

N o n e .

V e n t i l a

t i o n

t u b e s

i n f e c t

i o n s

t h e a g e o f

3 t o 7 y e a r s .

i n t h e e a r s s i n c e

b i r t h .


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T a b l e

3 .

C o m m u n

i c a t

i o n

i n t h e c h

i l d r e n a s r e p o r t e d

b y

t h e p a r e n

t s

C h i l d 1

C h i l d 2

C h i l d 3

C o m m u n

i c a t

i o n m o d e

B o d y s i g n s

S p e e c h a n

d s i g n s

S p e e c h a n

d s i g n s .

A l s o

u s e d

i n t h e

f a m

i l y

p i c t u r e s , o

b j e c t s ,

b o d y

l a n g u a g e a n

d b o d y s i g n s .

M a k i n g c o n t a c

t

E a s y

Q u i

t e d i f f i c u

l t , o n

l y

D e p e n

d s o n

t h e

w i t h t h e c h

i l d

s h o r

t e y e c o n t a c

t s .

m o t

i v a t

i o n o f

t h e c h

i l d .

T h e w a y s

t h e c h

i l d

C r i e s ,

l a u g

h s , s

m i l e s .

G e s

t u r e s

( u s e s

G e s

t u r e s , a c

t i o n

( f o r

e x p r e s s e s

h i m

/ h e r s e

l f

S h o w s w

h e r e

a b o u

t 2 0 s i g n s ) .

e x a m p l e

t a k i n g a

h a n d

)

s h e w a n

t s t o g o .

a n d v o c a

l i z a t i o n .

H o w

w e l

l i s

t h e

D e p e n

d s o n

t h e

I s u n

d e r s

t o o d .

I s g e n e r a

l l y

c h i l d

u n d e r s

t o o d

s i t u a t

i o n .

u n d e r s

t o o d .

I m i t a t

i o n

V o c a

l i z e s s o m e t

i m e s

I m i t a t e s g e s t u r e s ,

I m i t a t e s g e s t u r e s ,

m o r e , s o m e t

i m e s

l e s s .

s o m e s o u n

d s a n

d s i g n s .

s i g n s a n

d a c

t i o n s .

U n d e r s t a n

d i n g o f

U n d e r s t a n

d s

U n d e r s t a n

d s

U n d e r s t a n

d s t h e

s i g n s

s h o r t r e q u e s t s

u s e d , p

r o b a b l y

c o n n e c t e d

t o

a l s o s p e e c h .

h e r e - a

n d - n

o w

s i t u a t i o n s

T h e i n t e r a c t

i o n

E a t i n g , r e a d

i n g a

L a u g

h s a n

d t o u c

h e s

L i k e s

t h e m o m e n t s w

h e n

s i t u a t i o n s

t h e c h

i l d

b o o k

( l o o k

i n g a t

h a i r a n

d f a c e w

h e n

s h a r

i n g e x p e r i e n c e s . A

l s o

l i k e s . T

h e w a y s

t h e

p i c t u r e

b o o k s ) ,

e x p e r i e n c e s p l e a s u r e

s i t u a t

i o n s w

h i c h

g i v e

c h i l d

e x p r e s s e s

a s s i s t e d w a l

k i n g .

i n a n

i n t e r a c t

i o n

s p a t

i a l a n d

t a c t i l e

p l e a s u r e

s e s s

i o n .

e x p e r i e n c e s

t o t h e c h

i l d .

( c o n t i n u e

d )


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T a b l e

3 :

( c o n

t i n u e

d )

C h i l d 1

C h i l d 2

C h i l d 3

S h o w s p l e a s u r e

b y

s m i l i n g a n

d t u r n i n g

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S o m e a p p o

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N o n e

N o n e

l a n g u a g e

t h e r a p y

b e c a u s e o f

s w a l

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i n g p r o b

l e m s .

D a y - c

a r e o r

A t h o m e .

T h e

C l a s s

f o r t

h e h e a r

i n g

P a r t

t i m e

i n k i n d e r g a r t e n

s c h o o l a n

d t h e

a p p r o p r i a

t e

i m p a

i r e d w

i t h

a n d a t

h o m e w i

t h a n a i

d .

c o m m u n

i c a t

i o n

c o m m u n

i c a t

i o n m o d e

a d d i t i o n a

l d i s a b

i l i t i e s .

S p e e c h , s

i g n s , b

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s i g n s , a n

d g e s t u r e s .


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As the shortest recording lasted 15 minutes (Child 2), the communicativelymost active sample of 15 minutes was also selected for the analyses fromthe recordings of the two other children. Two different methods were usedin the analyses: modifications of the Tait Video Analysis (Tait, 2003; Taitet al., 2001a) and the Communicative Intention Inventory (Coggins andCarpenter, 1981). These two methods turned out to be useful in studyingthe communication of children with dual sensory impairment. The twomethods selected were also appropriate tools for studying the childrenscommunication in a detailed way in the free-play sessions. Furthermore,using these methods it was possible to identify the communicative expres-sions the children made using different kinds of communication modes.

Modification of the Tait Video AnalysisThe Tait Video Analysis has been developed for studying the preverbalskills of hearing impaired children. The preverbal skills studied with thismethod have shown to have predictive value for later language devel-opment (Tait and Lutman, 1997). The method has also been proven tobe reliable (Tait et al., 2001b), and it has been used in analysing theinteractive skills of deaf-blind children. No significant differences havebeen found in their interaction in comparison with children with novisual problems (Margaret Tait, personal communication).

It was necessary to make some modifications to Taits original method(Tait, 2003). In Taits method it is possible to classify turns as non-look-ing vocal turns. They are used for situations in which the child is notlooking at the adult, but starts vocalizing when the adult stops speak-ing. They were left out of the analyses because of the visual impair-ments of the children studied made it impossible to interpret theirauditory behaviour exactly. The expression classified as non-lookingvocal turns in the original Taits method were classified here only asvocalizations. As it is often difficult to determine communicative turn-taking when studying the interaction of children with multiple impair-ments, pauses in the mothers speech were used as a guideline.According to the standard method in conversational analysis, all pausesover 0.2 seconds in the mothers speech were marked and measured. If the child communicated during the pause, the communicative expres-sion was identified and classified according to whether it was madewith a sign, a gesture or vocalization . If the child did not communicateduring the pause, NR (No Response) was marked on the transcript.

The childs communicative expressions during the mothers speechwere also marked and classified. Communicative expressions classified


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as gestures included, for example, facial expressions, pointing andcommunicative behaviour (for example, a child put shoes on a dollwhen asked to do so). A communicative expression was classified as asign if it was expressed with a recognizable sign in Finnish SignLanguage. The childs own signs whose meaning remained unidentifi-able to the researchers were also classified as signs but only if theyresembled conventional signs (having the handshape, movement, ori-entation and place of an official sign). It was also required that the childwas making an initiation by using the sign, or the mother noticed it andseemed to interpret its meaning as part of the interaction. Vocalizationcould be any sound produced by the child that he or she directed to themother. If the childs communicative expression had elements thatcould not directly be predicted from the mothers preceding turn, the

childs turn was classified asan initiation . An initiation could be, forexample, a change of topic or an expression of protest.Eye contact wasmarked on the transcripts every time the child had eye contact withhis/her mother during the mothers speech. Eye contacts during themothers pauses were also marked.

In scoring, the number of pauses in the mothers communication wascounted. Any pauses accompanied by a simultaneous communicativeexpression by the child were marked. All the childs communicative

expressions, including those occurring during the mothers speech, werethen counted and classified as either responses or initiations. Next, thenumber of acts that were realized as gestures, signs or vocalization wascounted. The amount and duration of eye contacts were examined bycounting the number of syllables spoken by the mother with the childsimultaneously looking at her. This number was then expressed as a per-centage of the total number of syllables spoken by the mother.Furthermore, all other eye contacts (those made by the child duringpauses) were also added up. The reliability of the process was estab-lished by using two independent scorers analyzing random samples fromall the motherchild pairs (10% of all the data). The interscorer reliabil-ity in classifying the communicative expressions was 88 per cent.

Modification of the Communicative Intention InventoryThe method used to assess the childrens intentional communicationwas based on the Communicative Intention Inventory (CII) conceivedby Coggins and Carpenter (Coggins and Carpenter, 1981). A child withtypical development begins to communicate intentionally at the age of 910 months (Bates, 1979; Mosier and Rogoff, 1994). When usingintentional communication, the child directs his or her message to


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another. Before communicating intentionally, the child expresseshim/herself in many ways but does not yet direct the message to a recip-ient this is called pre-intentional communication (Wetherby andPrizant, 1989). The CII method has been developed to assess the earlynon-verbal and verbal behaviour of children in a free-play situation.This method has been used in studying children with typical develop-ment (Carpenter et al., 1983), with Down syndrome (Coggins et al.,1983), with Cornelia-de-Lange syndrome (Sarimski, 2002), and withcochlear implants (Wright et al., 2002).

Some modifications were made to the original CII method. In the CII, thechilds expressions can be classified as intentional if the child and the adultare participating jointly. Because this definition doesnt emphasize the

expressions as being directed to the listener, another definition was usedfor intentional communication. With a typically developing child, the cri-teria for intentional communication generally include alternating gazebetween the shared focus of attention and the listener (Wetherby andPrizant, 1989). However, few children with multiple impairments can usegaze in an intentional way (Iacono et al., 1998). Because all three childrenexamined in the present study had visual impairment, the criteria for inten-tional communication were modified to allow ways other than gaze toconvey intentions to the listener. The definition used by Sarimski (2002: 5)

was adopted: An intentional communicative act was defined as an eventin which the child directs the motoric and/or vocal act toward the adultsas evidenced by eye gaze, body orientation, or physical contact and awaitsa response from the adult, as evidenced by looking at the adult, hesitatingor persisting in the communicative act. An expression classified as inten-tional was then categorized into one of the eight categories of the CII. Likein the Tait Video Analysis, the communication modes classified into theeight intentional categories were gestures , signs and vocalization .Agreement between the two scorers was established by independentlyanalyzing 30 short interaction sessions. The agreement percentage of thescorers in classifying the communicative acts as either intentional or pre-intentional was 97 per cent. Only the communicative acts that both scor-ers classified as intentional were included in the final analysis.

RESULTSCommunication modes and the number of communicativeexpressions, initiations and eye contacts during the free-playsessions with the motherWhen analysed with the modified version of the Tait Video Analysis,the three children had different amounts of communicative expressions


35


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36

during the free-play sessions when compared with each other. The num-ber of communicative expressions was 34 (Child 1), 51 (Child 2) and 72(Child 3). Initiations were included in the total number of communicativeexpressions. All the children mostly used gestures in their communica-tion. Child 1 made most (88%) of her communicative expressions by ges-tures (Figure 1). She used vocalization only during a few (12%)communication turns. Also Child 2 expressed most (88%) of his commu-nicative expressions by gestures. In addition, he used some signs (10%)but little vocalization (2%). Vocalization was the communication mode

most used (49%) by Child 3. She also used gestures (36%) and some signs(15%).

For all three children,initiations comprised slightly under half of thetotal number of communicative expressions. Child 1 made 14 initia-tions (41% of the total number of her communicative expressions),Child 2 altogether 23 (45%) and Child 3 altogether 28 (39%). The chil-dren used the different communication modes in initiations in quite thesame way as in the other communicative expressions. The total numberof initiations and the communication modes used to express them arepresented in Figure 2.

0

15

30

45

60

75

90


Vocalization Signs Gestures

Figure 1. Number of communicative expressions with their commu-nication modes used by the three children studied


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37

Each of the three children made only five instances ofeye contact or lesswith their mothers. Despite this, all the children could use their sight to

explore the toys. They also shared attention (for example, in looking at abook or a doll) with their mothers most of the time during the interactionsessions. The children had eye contact for less than 1 per cent of the dura-tion of the speech produced by their mothers. In the following, the indi-vidual characteristics of communication are presented for each child.

Child 1Child 1 was actively involved in the play session with her mother. Sheobserved and tried to imitate the actions modelled by her mother (e.g.

brushing the hair of a doll), and took part in the play she initiated.Otherwise, Child 1 spent considerable amount of time exploring thetoys by herself. She communicated using gestures, which mainly con-sisted of actions directly related to the play (e.g. reaching for a toy,protesting). She made all of her five eye contacts while her mother wastalking about a toy, or when she wanted to express something to themother (for example after she had dropped a drumstick on the floor). Inthe following example, two of her communicative expressions takeplace during a pause made by the mother (childs communicativeexpressions number 1 and 3) and one during her mothers speech (com-municative expression number 5).

0

5

10

15

20

25

30


Vocalization Signs Gestures

Figure 2. Number of initiations and the ways of expressing themused by the three children studied. Analyses were performed with asystem based on Tait Video Analysis


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Child 1

Child 2Child 2 was also very active in the play session, but able to concen-trate on playing with each toy only for a short moment. To keep theplay going, the mother often needed to take control and guide him. Inthe example below he repeats a sign made by his mother. Even thoughhe was reported to have a mild visual impairment that doesnt causesevere problems in vision, Child 2 didnt look at his mother evenwhen making some signs. Additionally, in the questionnaire the par-ents also reported that he only made brief eye contacts at home. Thetwo eye contacts he made during the play session were just quickglances at the mother. This happened, for example, in a situationwhere his mother was forbidding him. In situations where he wasintensively concentrating on some task (e.g. dressing up a doll), he didnot necessarily even look directly at the object he was holding in hishands. He made both communicative expressions (childs commu-nicative expressions number 2 and 3) during pauses. The words themother both spoke and signed are printed in bold.Child 2

Child 3Child 3 was tired during the videotaping and wanted to stay very close tothe mother. The child imitated her mother by vocalizing and making somesigns. She vocalized more than the two other children, and her vocaliza-tions, consisting of canonical syllables and emotional variation in tone,

were interactive in nature. Some of her signs were identifiable, while


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39

others were not. Her gestures consisted of smiling, turning to the motherand performing an action, like blowing, during the play. Of the three chil-dren studied, Child 3 used the most tactile ways in exploring the toys. Shebrought the toys very close to her face, touching them with her lips andnose. She also explored various items with her fingertips. Like Child 2,Child 3 did not make eye contact with her mother while using signs. Allthree eye contacts made by her occurred in situations where she was phys-ically very close to her mother. In the following example Child 3 was tak-ing turns and interacting with her mother with a mmm sound(communicative expressions from 1 to 4). After this she protested to hermothers comment by raising and changing the tone of her voice.Child 3

Intentional communication during the free-play situationsAll three children produced intentional communicative acts as classi-fied according to the definition used by Sarimski (2002). However, theirfrequency was rather low compared to the total number of communicativeacts. Intentional communicative acts covered 15 per cent of the totalnumber of communicative acts for Child 1, 18 per cent for Child 2, and15 per cent for Child 3. For the three children studied, there was indi-vidual variation in the number of intentional communicative acts, thefunctions of intentional communication and the communication modesused in the expressions.

For all the children, the most common function of intentional commu-nication was protesting. The frequencies of the functions of intentionalcommunication, as classified into six of the inventorys eight categories,are presented in Table 4.

DISCUSSIONDuring the video recorded free-play interaction sessions, all three chil-dren produced a different number of communicative expressions, and,again, each child had an individual communication profile. However,there were also similarities in their communication. As expected, the

children, representing the early stage of language development, com-


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municated primarily by using various types of gestures. Child 2 andChild 3 also used some signs in their expressions. Almost half of thechildrens communicative expressions could be classified as initiationsindicating that the children were actively involved in the interaction

Table 4. Functions of intentional communicative acts representingcategories in the CII method (Coggis and Carpenter 1981) in thethree children studied

Category Child 1 Child 2 Child 3 ExamplesProtesting 4 5 3 The mother gives a drumstick

to the child. The child takesit, throws it on the floorand looks at the mother.(Child 1)

Acknowledging 0 3 4 The child signs shoes afterthe mother has saidTake the shoes off.(Child 2)

Request for 0 1 1 The child tries to put a shoeaction on a doll. When having

difficulties in that, he takesthe mother by the hand.(Child 2)

Comment on 0 0 1 The child has a scarf on heraction face. She takes it away,

produces a sign and looksat the mother. (Child 3)Comment on 1 0 1 The mother is holding a doll.object The child first looks at it,

then at the mother andreaches to look at the dollssocks. The child smilesand looks at the mother whenthe mother is talking about

the socks. (Child 1)Answering 0 0 1 The child picks up a platefrom the floor after themother has asked where ithad been placed. (Child 3)


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session. Many of the childrens communicative expressions wereintended to affect the adults behaviour.

The children studied here made limited eye contact with their mothersduring the interactive play. However, they seemed to be able to use theirimpaired vision in exploring the toys. From the information reported by theparents about the childrens visual impairments it can be seen that Child 1and Child 3 had severe problems in their functional vision. This was alsoevident in the studied play sessions. Both of the children tended to bringthe toys very close to their faces, with Child 3 especially using mainly tac-tile ways in exploring them. Child 2 was reported to have a mild visualimpairment. Nevertheless, also he made very limited eye contact. It is mostlikely that Child 1s and Child 3s visual impairments are the main reason

for their limited eye contact. With Child 2 it is not certain whether the lackof eye contact was related to the visual impairment or to the autistic-likebehaviour which is often reported to accompany CHARGE (Hartshorne etal., 2005; Johansson et al., 2006; Miller et al., 2005). However, interpretingthe lack of eye contact as an autistic-like behaviour in children withCHARGE can be misleading, as problems with eye contact may well berelated to looking behaviours typically found in deaf-blindness. Even forblind children with no hearing impairment autistic tendencies have beenfound to be difficult to separate from autism (Andrews and Wyver, 2005).

Therefore, more children need to be examined to define the role of visualimpairments/autistic-like behaviour in communication of children withCHARGE. Children with impaired vision can also have oculomotor prob-lems (problems in visually localizing, fixating to, following, or scanningobjects) and hence may not be looking at objects of focus when expectedto. They also may, because of visual field restrictions, look beside or underthe object or tilt their head when looking at something (Chen, 2005). As aconsequence of damage in the central retina, they often bring objectsclose to their faces for better visual acuity. These kinds of atypical featuresof visual behaviour often make the interpretation of a childs communica-tion challenging. Further, taking into account the high prevalence of oph-thalmic problems in children with hearing impairments (approximately from40% to 60%, Nikolopoulos et al., 2006), serious attention needs to be paidto their detection, habilitation and their hampering role in the acquisitionof communication skills (Chen, 2005; Nikolopoulos et al., 2006).

All the children communicated intentionally. However, the proportionof intentional communication in relation to the total number ofcommunicative acts was quite low. The chosen definition of intentionalcommunication restricted the number of intentional communicativeacts, although it allowed many ways of directing the message to the


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communication partner. It was found, for example, that some of thecommunicative expressions classified as initiations in Taits method didnot fulfil the definition of intentional communication used by Sarimski(2002). Also, Sarimski himself found that children with Cornelia-de-Lange syndrome (n = 13) who were in the preverbal stage of their lan-guage development made only a few intentional communicative actsduring recorded play sessions. These findings suggest that children withmultiple impairments express only some intentional communication inthe early stage of language development. However, it is unclear howmuch this finding results from limitations of the existing methods forexamining intentional communication in children with multiple impair-ments. Gestures were the most used communication mode for inten-tional communication in the 13 children studied by Sarimski (2002).

The same finding was true in the present study for children withCHARGE. Carpenter et al. (1983) and Wetherby et al. (1988) report thatgestures alone or in combination with vocalization are the most usedcommunication modes also for typically developing children who arein the early stage of their language development.

In this study, the most prevalent function of intentional communicationwas protesting. Similarly, Sarimski (2002) found that most of the inten-tional communicative acts in children with Cornelia-de-Lange syn-

drome were classifiable as protests. Protesting has been found to be thefirst function of intentional communication, also in children with typi-cal development at the age of about eight months (Carpenter et al.,1983). The youngest child in our study was 1.4 years old. It is wellknown that a typically developing child can have a rather wide com-municative repertoire by the age of 15 months. The communicativefunctions that have been found to exist at this age are protesting ,requesting for action , requesting for object , commenting on action andcommenting on object . Further,showing off and requesting for social routines (game-like social interactions) from the functions of socialinteraction skills are common at this age (Carpenter et al., 1983;Wetherby et al., 1988). The children with Cornelia-de-Lange syndromethat Sarimski (2002) studied made many requests for actions andobjects. However, the children studied here made only a few requests.The difference between these results can possibly be explained byvisual impairment, which makes it more difficult for children withCHARGE to reach or make other intentional communicative actsrelated to objects or actions. Similarly, Preisler (1991) found that despitebeing actively involved in the interactive situation, blind children (aged


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(2005) emphasize the role of competent and adaptive communication part-ners in supporting the childs communicative development. The presentstudy focused specifically on finding the individual features of communi-cation in the motherchild pairs studied. Careful examination of the com-municative behaviour of a child and his or her parents can serve as a basisfor early intervention. Auditory experiences provided by either hearing aidsor cochlear implants (Bauer et al., 2002), and especially the related audio-logic habilitation are important factors in supporting the development of communication and language skills in children with CHARGE (Thelin andFussner, 2005). In this study it was found that children with CHARGE whowere in the early stage of their language development had individual com-munication profiles but also shared some similarities. For example, all of the three children studied used many gestures. Parents could be advised to

pay more attention to gestures and the focus of the childs attention in turn-taking. Taking part in an activity or talking about a topic that the child haschosen has been found to support language development (Dote-Kwan,1995; Janjua et al., 2002; Norris and Hoffman, 1990). All three childrenstudied also showed the ability to imitate actions or signs. Modelling canbe used at this developmental level to support learning of new skills. As thechildren only made limited eye contact with their mothers, parents couldalso be advised to use the tactile and/or auditory channel more in makingand keeping contact with their child. However, despite some common

guidelines, the particularity of each child and their family should be thebasis of the planning of intervention.

This pilot study revealed some characteristics of communication inthree children with CHARGE. It was noted that making decisions onthe communicative nature of the behaviour of these children was verychallenging. Similarly, Yoder (1987) found that making decisions onthe communicative ability of expressions is more difficult when scor-ing the behaviour of children with more severe impairments. He also

noticed that children with severe impairments expressed themselvesin a qualitatively different way than children with less severe impair-ments. It should also be noted that the 15 minute sample of behaviourfor each child can reveal only some features of communication. AsWetherby and Prizant (1989) emphasize, comprehensive evaluationof the communication of a child would require running a longitudinalstudy and evaluating the child with different communication partners.Information on the characteristics of interaction between childrenwith CHARGE and their family members in different interactive situa-tions would also be important for finding appropriate methods forintervention. It would also be essential to know how different inter-


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vention methods affect the quality of the interaction between thesechildren and their families.

AcknowledgementAnna Majuri is kindly acknowledged for her input as a scorer in examining theinterscorer reliability.

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Communication in the Early Stage of Language Development in Children With Charge Syndrome

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