My 7 yr old son has Spinal Muscular Atrophy and is in a wheelchair. He attends a regular school and has a shadow in the classroom to help him with books etc. He has not spoken in school since he started 3 years ago. Up until 3 months ago he spoke with a normal voice at home. Now he only whispers at home. (One morning he woke up and just starting whispering). At school he started the year not speaking at all. Now he whispers to everyone except the teacher. So what remains is getting him to speak in a normal voice in all settings. However, we are not seeing any progress and the school told us he cannot come back next year unless he can speak to the teacher. We started him on Prosaic first 1 mg now he is at 5 mg. Can you comment on the change at home, how to get out of the whisper mode to a normal voice, and any advice on dealing with the school?
Thank you for your question. Your child has heightened anxiety. I will apply your son’ s disability with communication to his physical disability. Your son is unable to walk and use his muscles effectively. You have therefore provided him with a wheel chair to be mobile. The same needs to be done with his communication and anxiety disorder. He needs a wheelchair for communication and anxiety to be able to communicate. A wheel chair for communication is in the form of educational accommodations in school and accommodations at home to help him. Just as you would not expect him to get up and walk.. You can’t expect him to ‘just speak.’ I hope this analogy helps you understand that his mutism is not something that he is choosing.
His whispering at home now is a direct reflection of heightened anxiety. I assume since the school is pressuring him to speak there is a lot of pressure at home as well. What needs to be done is the following;
- You need to read as much as you can about SM from the SMA~CAN website. You will clearly see that helping a child overcome SM involves REMOVING pressure to speak and then planning, with the help of school, parents, child and treating professional specific tactics/techniques and therapy to progress form nonverbal–verbal communication. The approach being taken now is only making anxiety worse. He is feeling this at home since ‘whispering’ is occurring.
- Your child needs educational accommodations whether be Individual Education Plan or 504 Plan. Please read the following link to help you understand these accommodations:
By law, accommodations need to be made to help your son. Under the heading of “Child with a Disability,” it states that this term for a child aged 3 through 9 may include a child experiencing developmental delays in one or more of the following areas: physical development, cognitive development, communication development, social or emotional development, or adaptive development. Your school will need to do testing and a full evaluation to determine the degree of his communication impairment.
- Work with a treating professional who understands SM so that they can guide you appropriately with treatment and school recommendations. The SMACAN has various resources for you to help you with knowing the laws and educational accommodations for your child.
A child cannot go from mutism to speaking in one step. I know your son is whispering but I also believe when he is doing so his anxiety is tremendously high only stifling him more. Is he able to initiate his needs nonverbally (go up to…) peers, teachers? Can he speak one on one with select children, in a larger group setting? There are many questions that need to be answered and determined so that your treating professional can guide you appropriately.
Dr. Elisa Shipon-Blum