Total Communication Options for Children with Down Syndrome in the Context of Hanen Programs for Parents

Claire Watson, Senior S-LP
The Hanen Centre
Suite 403 - 1075 Bay Street
Toronto ON M5S 2B1, Canada
(416) 921-1073; Fax: (416) 921-1225
Re-printed from Wig Wag, a newsletter for Hanen Certified Speech-Language Pathologists
Winter 1996 issue, with permission from The Hanen Centre, Toronto, Canada.

Sam was 3 years 5 months when his parents began their Hanen program. He was still primarily a non-verbal communicator. Andrew was 2½. He had a vocabulary of 30 or 40 words although his speech was very difficult to understand unless accompanied by gestures or contextual cues. Nicky was 14 months old. She was just beginning to understand language within familiar routines and to imitate sounds and gestures.

These three children who have Down syndrome, and their parents, are among a significant number of families who come to the Hanen Centre. Because these children are identified early, they are sometimes the youngest in a group. Many aspects of "It Takes Two to Talk" are relevant for all families in a program regardless of their child's etiology. In the case of Down syndrome, for example, the characteristics of the syndrome do not affect how certain topics are covered, such as: children's communicative styles and language levels, symbolic play development, parents' roles and parents' sets of skills as a language facilitator. Nor does the etiology change the general ("3A") approach to intervention which is based on engaging with a child at his current level of ability and scaffolding him to a higher level.

Hodapp and Dykens (1991) point out, however, that the current task facing early interventionists is to join general aspects of intervention with etiology-specific aspects in order to tailor intervention for each child. This is more of a possibility as research becomes available on the nature of different etiologies. Thus, children with diverse conditions are no longer treated under the general umbrella of "mental retardation." Hanen Programs are ideal for this model of intervention because of the format which combines group sessions with individual visits. General information and intervention strategies are presented during group sessions with the additional advantage of "normalizing" certain aspects of child development for parents whose child has a specific diagnosis. Etiology-specific aspects of intervention can be introduced during group sessions and further individualised during home visits. In the case of children with Down syndrome, one of these specific aspects relates to the use of signs or gestural communication and its effect on language development. (I use the terms "signs" and "gestural communication" interchangeably throughout this article).

The questions of whether and how to introduce gestural communication comes from my experience in working with families such as the three mentioned above. Personally, I thought I had answered this for myself a long time ago based on clinical experience and research carried out in the `70s and `80's. However, some parents are still reluctant to try signs with their child for fear of preventing the development of speech. Some parents have not yet heard of Total Communication when they enter a Hanen Program. Other parents have encountered conflicting advice from professionals or other parents.

The fact that the use of signs has not become standard practice among families who have a child with Down syndrome, prompted me to take another look at the subject. More specifically, how do families view this issue, what does current research have to say and what sort of approach might be taken by SLPs in their work with families during a Hanen Program?

First, I thought it would be helpful to review the speech and language characteristics of children with Down syndrome.


Originally, it was thought that children with Down syndrome developed language like non-delayed children but at a slower rate. More recent research has pinpointed differences not only in the language product but in the language-learning process as well (Stoel-Gammon, 1990). A review of the characteristics of children with Down syndrome shows that:


Based on the diverse profile of children with Down syndrome, comprehensive intervention usually encompasses many developmental areas including: medical, motor, hearing, cognition, speech, language and parent training. Within these areas, intervention is tailored to meet the unique aspects of each child and family. With respect to speech and language, Swift and Rosin (1990) propose a multi-faceted remediation approach which includes different configurations of goals for children as they develop through prelinguistic, early linguistic and late linguistic stages. Components of treatment include: hearing aids, augmentative communication, oral motor work, speech therapy and parent training.

We know that learning is most successful when the mode of teaching matches a child's preferred learning style (perceiving and processing) and for many children with Down syndrome, this would mean capitalising on their strengths in the visual modalities. There is a fair amount of literature from researchers, clinicians and parents in support of the use of manual gestures and signs, at least during the prelinguistic and emerging language stages as a way to "bridge" a child's transition to speech (Kouri, 1989; Simons Derr, 1983; Rosenwinkel, 1986; Swift and Rosin, 1990; Kumin, 1994; Jago et al, 1984; Clarke et al, 1986). Kumin (1994) strongly recommends that parents introduce signs at around one year of age and expect that their child stop using them at around age five.

The typical pattern of acquisition for children who receive a Total Communication approach is that they first use a sign alone, then they use an oral response with the sign, and finally they use the word by itself (Kouri, 1989).

Gestural input is thought to tap into a child's visual-perceptual strength by bypassing short-term memory and auditory processing (Kouri, 1989). Gestural learning is favoured by handicapped as well as non-handicapped babies and has been found to result in larger oral vocabularies, at least in the short term (Holder, 1995; Kouri, 1989). Gestures, in comparison to the speech stream, are less complex and make word-referent associations easier to grasp. Gestures are also motorically easier to make than finer articulatory movements.

In a study by Sedey et al (reported in ACN, 1992) of 46 children with Down syndrome ages 1 to 9 years there were many positive findings including the fact that 87% of parents felt that signing was or had been beneficial to their child. Reasons for introducing signs are well summarised in this study - "to improve oral language, provide some form of communication and alleviate a child's frustration." When parents stopped using signs it was because their child started talking or became more intelligible, reaffirming the notion of signs as a "bridge" to speech. The visual stimulation may also stimulate faster receptive language growth in preverbal children (Rosenwinkel, 1986).

Perhaps some of the caution around introducing signs comes from studies that were not as conclusive in their support for the "bridge" hypothesis (Jago et al, 1984; Romski and Ruder, 1984; Weller and Mahoney, 1983). These authors' general findings showed that children who were given a Total Communication approach did acquire larger sign vocabularies but not larger oral vocabularies. They did, however, find variability among children in their studies and concluded that in no case did signs inhibit the acquisition of speech.

Therefore, it seems there are at least three philosophical stances which clinicians/parents may take:

  1. Introduce signs at an early age with all children;
  2. Make the decision on an individual basis;
  3. Adhere to an oral-only approach.

In the context of parent programs, it only makes sense to approach the issue on an individual basis by helping parents make the best decision for their child. While the majority of research seems to favour the use of signs, all the research in the world may not be enough to sway the parent whose philosophical stance is that children do best with an oral-only approach.


The question of how to approach Total Communication with any parent depends not only on their child's expressive language, but also on other aspects of the child's communication, the parents' skills as language facilitators, parents' receptivity to the notion of signs as well as larger social and educational implications. With parents in a Hanen Program, there is the additional factor of having a limited amount of time to explore the issue. If signing is something I feel might benefit a child, ideally I would mention it early on in a program. This gives parents time to explore the idea during their individual sessions (home visits) and to evaluate the success of signs during a trial period.

In reality, circumstances are unpredictable. Introducing signs may not be appropriate or may need to be delayed for many reasons, for example, if:

Now I'll return to our three families to see how the issue of signs worked out for each of them, keeping in mind that they had other intervention goals which are not discussed here.


Child at Level III

Andrew, the 2 ½ year old, is perhaps the most straightforward case. His mother, K. (his father did not attend the program) began the program with a child-centred approach, relatively good language facilitation skills, an awareness of what she was doing and what she needed to learn. According to K., Andrew's expressive vocabulary included 30 or 40 word approximations. But from her report and my observation, his vocal output was relatively low. Comprehension was around the 20-month level.

When Andrew and I were playing at blowing soap bubbles during the pre-program consult, he quickly learned an iconic gesture for "blow bubbles" after attempts to elicit word approximations for `blow" or "bubbles" were unsuccessful. This led to a discussion on the use of gestural communication. K. had apparently received conflicting advice from other parents and preschool staff. K. decided to give signs (and pictures) a try since she was concerned about Andrew's high level of frustration at not being able to communicate.

I gave K. some material to read on signs (the references marked with a * are written for parents) and asked her to help gather information on Andrew's vocabulary and speech repertoires using the MacArthur Inventory and a speech checklist. At the first home visit, in addition to the regular videotaping and feedback, we identified 5 words/signs to introduce on a trial basis and daily activities/games in which they could be modelled. We also selected several of Andrew's favourite foods that could be pictured on the fridge as a way of supporting his unclear verbal requests for food.

By the end of the program, Andrew had a growing vocabulary of an estimated 50 to 60 words (a mixture of words, words + signs and signs alone). There were also a few examples of two-word phrases (sign- word or word-word). K. felt good about continuing with signs as a way to augment Andrew's speech.

Child at Level IV

Sam, at 3 years 5 months, was a non-verbal communicator with a highly developed and effective set of gestures that included combinations of pointing and pantomime. His receptive language was at approximately the 20-month level with an estimated receptive vocabulary of 370 words according to the MacArthur Inventory. What Sam lacked however, was a way of expressing things symbolically (orally or in signs). This meant that he could only communicate about topics in the here and now, that he lacked ways of describing things and that he rarely asked questions - all communication functions which would be consistent with his receptive stage.

In my opinion, Sam was a perfect candidate for Total Communication. Sam's parents, however were not open to trying signs with him, even though this had been suggested by other parents and professionals. During the program, we had several opportunities to discuss signs, including their fear that signs would inhibit oral language. I gave them material to read. Home visits were based around other intervention goals including language modelling, word targets and ways to help Sam vocalise.

By the end of the program, Sam's parents appeared to have shifted somewhat in their thinking. They talked about having a greater appreciation of how competently their child communicated using gestures. Even more significantly, Sam's mother was beginning to entertain the possibility of using signs and saw this as a positive shift in her thinking. This opened the way for me to include specific suggestions around the use of signs in their final Hanen report, albeit too late in the program to monitor their use on a trial basis.

Child at Level II

Nicky, at 14 months was on the verge of language comprehension. She was beginning to anticipate steps in familiar games and routines and would occasionally attempt to imitate a word or gesture. All in all, the gap between her language age and her chronological age was not great at this point in time. However, the gap is expected to widen in many children with Down syndrome and in Nicky's case, she also had a fluctuating hearing loss related to middle ear infections. Ideally, gestural input would help a child with Nicky's profile, both in early comprehension and in speeding up the onset of expressive language.

As it turned out, the issue of signs did not come up until midway through the program. Nicky's parents were initially uncertain as to whether they were taking the Hanen Program at a good time in her development (they eventually found it to be very beneficial). Her father had trouble believing that whatever he was doing then, would pay off down the road. Her mother talked about feeling depressed by things she had read about the prognosis for a child with Down syndrome. Based on their feelings and on my observation of the parent and child communication, it seemed appropriate to stay with general facilitation goals as well as respond to the parents' doubts and concerns as they arose. One goal was to help the parents become more aware of Nicky's attempts to communicate along with a better understanding of their role in her language-learning process.

The use of gestural communication came up at the second home visit when Nicky's father asked about what to expect in the long term. I felt that this was an opportunity to talk about gestures in an informal way and pointed out that they were thinking about this at a good time in Nicky's development. Rather than identify specific sign targets, I suggested they begin by using natural gestures (e.g. holding out their arms, shrugging shoulders, pointing, etc.) during their communication with Nicky. I gave them a sheet of "true" signs (from Bornstein et al, 1983) to refer to at a later stage. They also obtained a copy of Libby Kumin's book which has an excellent section on the benefits of Total Communication.


One thing that struck me in preparing this article is how much evidence there is in favour of the use of Total Communication with children with Down syndrome. However, no matter how much knowledge or research we rely on to inform what we do, parents come to their own choices in their own time, our role being to help them make informed choices.

What also struck me, is that those of us who take a family-centred approach face something of an ethical dilemma whenever the needs of the child (as we perceive them) clash with the beliefs and practices of the parents. While I believe strongly that supporting parents ultimately increases the well-being of their child, I am troubled by cases such as Sam's where I felt pulled towards advocating for his communication needs in the face of his parents' reluctance to meet them.

And finally, I see parallels between the issues of Total Communication for children with Down syndrome, two languages for language-delayed children in families from other cultures (see WigWag Winter '95) and oral vs. sign language for deaf children. The communication systems used with and by children in all of these situations should hopefully be determined on the basis of giving the child the greatest access to communication partners and models and not on the lifestyle choices of the family.

I hope that this article raises questions for readers and that you will write in with your thoughts and experiences.


ACN (1992) Changing times for people with Down syndrome. Augmentative Communication News, vol. 5, no. 2 (March) 1-5. Published by Augmentative Communication Inc., One Surf Way, Ste 215, Montery, CA 93940. *

Berger, J. (1990) Interactions between parents and their children with Down syndrome. In D. Cicchetti and M. Beeghly (eds). Children with Down Syndrome: A developmental perspective, New York: Cambridge University Press.

Bornstein, H., Saulnier, K. & Hamilton, L. (1983) The Conprehensive Signed English Dictionary. Washington, D.C.: Gallaudet University Press.

Buckley, S., Emslie, M., Haslegrave, G. & LePrevost, P. (1986) The Development of Language and Reading Skills in Children with Down's syndrome, Portsmouth Down's Syndrome Project, Psychology Dept., King Charles Street, Portsmouth, England P01 2ER.

Clarke, S., Remington, B. & Light, P. (1986) An evaluation of the relationship between receptive speech skills and expressive signing. Journal of Applied Behaviour Analysis, vol. 19, no. 3 (Fall) 231-239.

Dunst, C.J. (1990) Sensorimotor development of infants with Down syndrome. In D. Cicchetti and M. Beeghly (eds) Children with Down syndrome: a developmental perspective, New York: Cambridge University Press.

Fowler, A.E. (1990) Language abilities in Down syndrome children. In D. Cicchetti and M. Beeghly (eds). ibid.

Fowler, A.E. (1988) Determinants of rate of language growth in children with Down syndrome. In L. Nadel (ed.) The Psychobiology of Down syndrome, Cambridge, M.A. MIT Press.

Gibbs, E.D., Springer, A.S., Cooley, W.C. & Gray, S. (1993) Early Use of Total Communication: Parents' Perspective on Using Sign Language with Young Children with Down Syndrome (a video). Baltimore MD: Brookes Publishing.

Gibson, D. (1991) Down syndrome and cognitive enhancement: not like the others. In K. Marfo (ed.) Early Intervention in Transition, New York: Praeger Publishers.

Hodapp, R.M. & Dykens, E.M. (1991) Toward an etiology-specific strategy of early intervention with handicapped children. In K. Marfo (ed.) ibid.

Holder, K. (1995) Look who's signing. The Globe and Mail, October 28.

Jago, J.L., Jago, A.G. & Hart, M. (1984) An evaluation of the Total Communication approach for teaching language skills to developmentally delayed preschool children. Education and Training of the Mentally Retarded, vol. 19 (Oct) 175-182.

Kouri, T. (1989) How manual sign acquisition relates to the development of spoken language: a case study. Language, Speech and Hearing Services in the Schools, vol. 20, 50-62.

Kumin, L. (1994) Communication Development in Children with Down Syndrome: A Guide for Parents. Rockville, MD: Woodbine House, Inc. *

Mervis, C.B. (1990) Early conceptual development. In D. Cicchetti and M. Beeghly (eds.) Children with Down Syndrome: A developmental perspective. New York: Cambridge University Press.

Nadel, L. (ed) (1988) The Psychobiology of Down Syndrome, Cambridge: MIT Press.

Pueschel, S.J., Gallagher, P.L., Zartler, A.S. & Pezzullo, J.C. (1987) Cognitive and learning processes in children with Down syndrome. Research in Developmental Disabilities, (8) 21-37.

Romski, M.A., & Ruder, K.F. (1984) Effects of speech and speech and sign instruction on oral language learning and generalization of action + object combinations by Down's syndrome children. Journal of Speech and Hearing Disorders, vol. 49 (Aug) 293-302.

Rondal, J.A. (1988a) Language development in Down's syndrome: a life-span perspective. International Journal of Behavioural Development, 11 (1) 21-36.

Rondal, J.A. (1988b) Down's syndrome. In D. Bishop and K. Mogford (eds) Language Development in Exceptional Circumstances, Longman Group U.K. Limited.

Rosenwinkel-Marshalla, P. (1988) Insights into language stimulation for children with Down syndrome. Innovative Concepts in Speech and Language Therapy, May. *

Sabsay, S. & Kernan, K.T. (1993) On the nature of language impairment in Down syndrome. Topics in Language Disorders, vol.13, no. 3 (May) 20-35.

Simons Derr, J. A. (1983) Signing vs. Silence. The Exceptional Parent, (Dec) 49-52. *

Stoel-Gammon, C. (1990) Down syndrome: effects on language development. ASHA, (Sep) 42-44.

Swift, E., & Rosin, P. (1990) A remediation sequence to improve speech intelligibility for students with Down syndrome. Language, Speech and Hearing Services in Schools, vol. 21 (July) 140-146.

Weller, E.L., & Mahoney, G.J. (1983) A Comparison of oral and total communication modalities on the language training of young mentally handicapped children. Education and Training of the Mentally Retarded, (April) 103-110.

* These references are less technical and may be more suitable for parents.