Communication Challenges for Children with DIPG

Many children with DIPG have trouble communicating at points during their treatment. These communication problems can stem from many causes such as: swelling from the tumor, weak muscles in the neck that help the tongue and mouth to form letters, or from the tumor irritating or damaging certain cranial nerves that control the vocal cords. Some children with DIPG have speech that is difficult to understand. Speech therapy may help. Children may recover their speech over time if loss of speech is due to a reversible cause, such as swelling. Sometimes speech does not improve much, even with therapy. This can be quite frustrating for you and your child. Remember to be patient and let your child have extra time to try to communicate with you. Here are some helpful hints to improve communication.

• Speech therapy: Ask your doctor or nurse practitioner if he or she thinks speech therapy would be helpful and, if so, to help you arrange the therapy.
  
  
• Picture boards: Your speech therapist can help you make a picture board to identify common things that your child may be trying to communicate. You can also do this as a family project. Find pictures in magazines, print pictures from online, or draw pictures of common things your child may want to communicate, such as being hungry/wanting food, being thirsty/wanting a drink, wanting to go to bed, wanting to go to the bathroom, wanting to play, wanting to watch TV or a DVD movie, having pain, feeling nauseated, etc. Some speech therapists have picture boards that are already made for different ages of children. You can teach your child to point to the picture of what he/she is trying to communicate. There is an iPad application (app) called Picture Board that is available for free download from the Apple store.
  
  
• Voice communication devices: There are computer programs or hand-held electronic devices that allow your child to push a picture of what they want and the computer "speaks" the word or phrase. These may not be available in your hospital, but you can ask about ways to order them. There is a useful iPad application (app) that can be downloaded for free called “Talk Assist” for those children who can type text that is then converted to speech; and another free application called “Small Talk, Conversational Phrases,” which provides a vocabulary of pictures that subsequently talk in a human voice.
  
  
• Pencil and paper: Have pencils (or markers or crayons) and paper readily available for your child to write down what he/she is trying to communicate. Save the common cards so they can be used over again. If your child cannot write but can read, consider writing common phrases out on 5 x 8 cards for your child to use to communicate what he/she needs or wants.
  
  
• Take your time and allow your child to take their time: Difficulty communicating is very frustrating for most children. Try not to rush your child or ask him/her over and over to repeat what he/she is trying to say. Begin to use picture boards or the written cards early, when your child is not having much difficulty communicating, so that it is natural to him/her when he/she is no longer able to speak clearly.