Speech therapy for children with PWS

By Dieter Schönhals, Academic Speech Therapist (dbs), Kerpen

The most prominent linguistic symptom of Prader-Willi Syndrome is dyspraxia. A person with dyspraxia is not in a position to precisely realise individual sounds and/or sound connections. Language movement planning and realisation are only possible for them to an inadequate extent. It is therefore difficult for them to place the movements required for speech productions in their spatial and temporal relationship.

There are various approaches for the treatment of childhood dyspraxia. Roughly speaking, there are two main directions for therapy: association therapy (e.g. according to McGinnis) and therapy, which gives the patient tactile-kinaesthetic hints for pronunciation. The PROMPT® method (Prompts for Restructuring Oral Muscular Phonetic Targets) is particularly worthy of a mention.

In association therapy, the child learns each individual sound in association with an image (meaningfully an image that triggers a mostly positive feeling). The child should be able to remember the sounds better and then retrieve them via the pictorial connection. First the sounds are worked out individually, then sound connections are added: Consonant-vowel: “ba”; consonant-consonant-vowel: “bra”; consonant-vowel consonant: “bab” etc.

In the current literature, however, the structure of the sound system with the help of tactile-kinaesthetic feedback for the sounds makes more sense. PROMPT® is the best known method. Here, too, the target sounds are isolated for the time being, and later practised in sound connections.

 However, the child always receives a tactile-kinaesthetic feedback from the speech therapist by means of movement on the lips, cheeks and base of the tongue. These prompts enable the child to “feel” the sounds directly. The sound is “mapped”, so to speak, and strengthened by tactile-kinaesthetic means. This makes sense because we generally control our speech not only through our hearing, but also through tactile-kinaesthetic feedback mechanisms.

It is important for the therapy with PROMPT® to be carried out at high frequency. One word can then be mapped 40-50 times per therapy unit. The therapy has to be built up step by step from a single sound to a whole sentence. Parents are taught special prompts to help their children continue the therapy at home. The children are also taught tactile signs to support themselves.

In Germany PROMPT® is unfortunately not yet very widespread. But more and more people are becoming trained professionals, who focus on this method (German Federal Association of Academic Speech Therapists dbs (www.dbs-ev.de)), Prologue (www.prolog-wissen.de).

The second major focus in speech therapy for children with PWS is building grammatical skills such as forming sentences. An important factor that enables a language learner to build sentences is short-term memory. Since this is often impaired in children with PWS, the linguistic structure alone can be difficult for that reason. So you should not expect too much at the beginning of the therapy:

small sentences (e.g. noun verb) are the first step in building the sentence grammar. The use of correct articles or inflected forms of verbs must be avoided for the time being. The structure of the sentence grammar naturally takes place in small steps: from one-word sentences to two- and multi-word sentences. At a later stage of therapy, many children with PWS may be able to speak multiple phrases.

The morphology, i.e. the changeability of words, is difficult for children with PWS to learn. Here the lack of phonological, i.e. phonetic abilities makes it difficult for them to find the “correct” forms. A simple example: “I go to school.” But: “You go to school.” And: “He goes to school.” The difference between “I go” and “You go” is clearly audible and can also be heard by children with PWS. However, due to the existing dyspraxia, it is only possible for them to realise the ending “o” with great concentration. Even more challenging is the difference between “go” and “goes”. A single sound can become a huge challenge for the child. The children often reduce the forms to one form (example: “I go”, “You go”, “He goes”, …).

Conclusion

If you have a child with PWS who is attending therapy, you should think in small steps so as not to overtax them. Frequent repetitions are necessary due to the lower storage capacity. The structure of the language is similar to that of a regularly developed child. On the whole, however, language development is much slower and has strong dyspractical components. The aim should not be to get the child to speak as quickly as possible, but to strengthen his or her communicative abilities to such an extent that he or she can participate in everyday life as early as possible. Certain stages of development or therapy may be useful which neglect the development of spoken language in order to promote the child’s mimic and gestural abilities. Communication via these paraphrased channels is also possible and extremely satisfying.

Practice for Speech Therapy, Cooperation Practice of the University of Cologne, Dieter Schönhals, Academic Speech Therapist (dbs)

Kooperationspraxis der Universität zu Köln

Dieter Schönhals

Akad. Sprachtherapeut (dbs)

Kerpener Straße 146

50170 Kerpen

Tel.: 02273-953939