Hearing and Communication

One of the common symptoms of SLOS is delayed speech and a difficulty in communicating in general. Hearing loss has also been determined in some of the SLOS children which leads to even further communication issues. There are several tests that can be done to determine if there is hearing loss. The most typical test is the studio test where kids are asked to respond to the sounds they hear. With SLOS kids, this is not always an accurate measurement. There is also the BAER (Brainstem Auditory Evoked Response) or ABR (Auditory Brainstem Response) which is done under sedation and measures the brainwaves when sounds are played in the ears. In addition there is an OAE (Otoacustic Emmission) test. These are much more accurate tests. If both the BAER and OAE show same results (fail) the child has a BAER/ABR, this would give indication that the child has auditory neuropathy in which essentially the ears work correctly, but the brain has problems processing the information. http://auditoryneuropathy.tripod.com/ANindex.html

Apraxia is also quite common in children with SLOS. They know what they want (or want to say), but can't communicate it, and thus makes them frustrated. In cases where the child knows both sign language and speech, they can switch between the two methods and are often less frustrated.

It is often recommended that SLOS kids use several methods of communication to give them a "total communication" package. Sign language is highly recommended even though the kids often do not have the complete ability to correctly produce the signs. Those that work with the children should be shown how the child makes the sign. In addition, picture systems (PECS), speaking sytems/switches, and speech therapy all help the child to learn to speak.

Most SLOS parents will recommend that you request sign language in school, and perhaps go so far as to ask for a signing itinerant. Many schools now introduce sign to all children at a young age, so it may not be as big a leap as thought.

Some systems that SLOS kids use are:

  • Cochlear implants
  • FM system - you wear a microphone and the child would have an earplug. Your voice goes directly into the child's ear.
  • PECS - Picture Exchange Communication System
  • Voice Output devices


Sign Language Choices include:

  • American Sign Language (ASL - signs for basic words, but word order is different than speech)
  • Signing Exact English (SEE - signs for every word, prefix and suffix in the order spoken)
  • Pigeon Sign (PSL - This is really ASL words, but in spoken order like SEE and is probably the most helpful for SLOS)
  • Cued Speech (series of signs to represent sounds) http://www.cfv.org.com


Communication tasks to work towards are:

  • get the attention of another person
  • engage another person in an exchange
  • understanding that the performance of a behavior(handing a picture, etc.) will result in a desired action


Communication systems and techniques:

  • Picture Exchange Communcation System (PECS) http://www.mayer-johnson.com 800/588-4548
  • GoTalk | Attainment Co, Inc. 800/327-4269
  • Cheap Talk
  • Four Square Talker
  • MessageMate 20
  • Makaton
  • Kumon learning
  • E-Stem Program
  • Conceptually Accurate Sign Language (CASE)
  • Dynovox or Chat Box (boxes that will talk for you)
  • Speech Therapy Equipment | http://www.speechdynamics.com
  • Body Aide - hearing aid and microphone in a pager size box
  • Box is clipped to child and tube are bed up through clothes to ears

Our Families

Markie Noah from Fargo, North Dakota. Carson Gallagher from Ann Arbor, Michigan.Hayley Martin from Woodcroft, South Australia.Alexis "Lexi" Black from Barboursville, West Virginia.