Sometimes  research answers questions you didn’t know you had.

During Down Syndrome Awareness Month (DSAM), or October to other people, all kinds of things get passed around social media. Some of it is new, specifically created for the occasion. Other things were popular in the past so they get recycled. Not everybody checks the date before posting – and if it’s a cute picture or funny video it doesn’t really matter, does it?

So during the flurry of posting I came across a reaction to a research study about what makes the voice of people who have Down syndrome different than other peoples’.

The voice of people with Down syndrome: An EMG biofeedback study.

The chief finding is that the energy level needed to activate the vocal mechanism from its at rest level to its voicing level is almost twice as great for the group with Down syndrome as for the control group. Implications for therapeutic interventions are considered. It is felt that new strategies to aid voicing need to be developed. The importance of keeping up fluid levels is highlighted.

fruit juces

The person who shared the post was interested in the original study question:  “explore possible causes of the often acknowledged harshness, hoarseness and gruffness in the voices of people with Down syndrome.”

I’ll confess, that never registered for me.  I wouldn’t have listed “harsh voice” as part of having Ds.

The layman-accessible report on Down Syndrome Education International, explains the reasoning behind additional questions that were asked of participants. They included whether they were introverts or extroverts, their level of stress, hearing loss, and how much they drink during a day.


Click for larger picture of Hydration levels


By including the extra questions, researchers were able to highlight the importance of hydration for good vocal health.

So, now I know. Since Josh was young I’ve had to push fluids on him. I often thought it was weird that he wouldn’t drink unless I coerced him. Now I know “it’s a Ds thing.”

This research was done in 1994. Thanks to the internet, it’s making the rounds this month, shedding light on something that I wouldn’t say was a real problem, but it is part of our everyday lives.

I’ve been doing this “parenting/caregiving” for more than three decades now and this is new to me. I’m writing about this for two reasons. First, I thought there may be other parents who have missed this too.

Down syndrome ribbonBut also, I’ve seen more than once, people posting about how we “have enough awareness.” Maybe, we are still learning. Still growing. As parents, and as a society.  Personally, I’m grateful for all the sharing, however you label it.

So whether you want to celebrate awareness or acceptance or research or just cute photos – please keep sharing! Please keep raising awareness! Please keep celebrating!

Happy #DSAM19 #321Proud #TRoadWS

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