Big Picture Thinking for Cerebellar Disorder and Cerebral Palsy

By Pam Marshalla

Q: My granddaughter, Stephanie, is 4-1/2 years old and diagnosed with apraxia. She was born with the cerebellum not fully developed and is classified as having cerebral palsy. Her speech is non-existent, although I can get her to make a variety of sounds in different pitches. In class she seems not to be attending at all. The SLP reported that until Stephanie can let her touch her face and put a spatula on her tongue, she can do little. She is thought to be quite bright. She signs a little but this is not encouraged at her school and she has lost the ability to a certain extent. I cannot bear to think of her growing up unable to speak.

I am going to be blunt and straightforward in my remarks about your granddaughter. Please remember that I am speaking in generalities since I have never seen this child in person. I have, however, worked with many like her over 30 years.

  • A cerebellar disorder means that Stephanie has a severe neuromuscular disorder. That means that it will take her a long time to speak, she will learn very slowly, and most likely she will have difficulty her entire life.
  • With a cerebellar disorder, Stephanie is not just apraxic. She also will be dysarthric. Apraxia manifests as a severe lack of sound in the early years. Thus she will be very slow to gain expressive speech. Once sounds and words begin to emerge, however, dysarthria will manifest as a severe distortion of sound. Thus, once she speaks, she probably will be very hard to understand for a very long time. There also is a tiny chance that she will not speak at all. But there is a good chance when will become quite verbal. TIME WILL TELL.
  • You stated that she is “bright.” Many families believe that just because their child seems to understand more than he or she can say, that there is nothing wrong with the child’s intelligence. This may or may not be the case. Stephanie may have comprehension problems too. I cannot state this with certainty, and it can be difficult to tell when the child has no expressive speech. The way to determine intellectual level is to have her tested by a psychologist who can do non-verbal testing (intelligence testing that does not require spoken responses). This is also problematic, however, because her motor skills are delayed as well. You can get a sense of her comprehension by asking yourself honestly if she thinks about the things that a typical 4-1/2 year old does. For example, is she interested in the alphabet, numbers and colors? Your local SLP should have some guidelines for you in this, or pick up a simple book on speech and language development, and look at the sections on receptive language and cognition. I have seen children with this disorder on both ends of the spectrum: those who are very bright and those with significant mental retardation. Time will tell in Stephanie’s case.
  • You stated that she “seems not to be attending at all.” This is part of the neuromuscular disorder. A cerebellar disorder leaves a child with limitations in all physical development, including the ability to settle oneself. This is part of her developing sensorimotor integrative status. I hope she is being seen by a motor specialist – either an occupational or a physical therapist – who is attending to her development in this area. That is the professional with whom to speak about arousal and attention. Keep in mind, however, that just because she does not look like she is attending does not mean that she isn’t.
  • Stephanie needs multiple paths of expression because verbal speech will develop so slowly. I cannot understand a school system that does not encourage at least gestures, signs and pictures to encourage communication in children who have severe expressive communication disorders. That makes no sense. These children are as hungry to communicate as any child.
  • She needs to be encouraged to use the voice she has. For example, if she brings you a book and says, “eh,” you can assume that she said “read” or “book” or “grandma will you read this to me.” Respond to her as if she said an intelligible word. Even tell her that you heard her word. You might say, “Read? Okay.” This will reinforce her for saying the “word” she did say, and it will encourage her to speak more. I have written about this process in my little book, Becoming Verbal with Childhood Apraxia.
  • I loved what you said about “talking” with her with pitch and intonation variations. If you listen to my CD’s called Apraxia Uncovered, you will see how important intonation and pitch variation is in the development of verbal speech. That program outlines the entire process of sound development in fine detail. Stephanie will grossly follow that developmental path. She sounds like she is integrating “Stage Two: Speechifying.” Work there and expect her to grow into the next stage soon. In “Stage Three: Honing,” she will begin to use more consonants.
  • Clarity on vowels will be the most important element of her intelligibility because it will take years for her to learn all the consonants. Teach her to say the basic early vowels (ee, oo, ah, oh, uh) now. Then expect her to say “oo” for “shoe” and so forth. Basic vowel clarity begins to emerge during the very first stage, “Stage One: Phonating.”
  • Finally, I am troubled by your statement about the spatula. It sounds like Stephanie is hypersensitive. I would expect oral hypersensitivity with a cerebellar disorder. However, this notion that nothing can be done until sensitivity level changes is, unfortunately, a common misconception about oral-motor therapy. It is not true. Stephanie can learn to move her mouth in many ways before she will let someone touch her face. With a cerebellar disorder, a child must learn voluntary control of the mouth. Teach her to begin to control her mouth movements in basic ways. For example, tell her:
    • “Open you mouth big, big, big. Say, ‘Ahhhh.'”
    • “Close your mouth tight. Say, ‘Mmmm.'”
    • “Smile big, big, big. Say, “Eeee.'”
    • Make a little circle with your mouth. Say, “Oooo.”
  • Explicit information about what her mouth can do will be important for speech development. A mirror will help her see what her mouth is doing. Help her look directly at your face and mouth.

I hope this helps get you into big-picture thinking and puts Stephanie onto a path of development that you and her SLP can work with to facilitate her growth. I’m grateful that you have a big heart and desire to help her 🙂

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