The Gaia Team sat down to pick the brain of Lisa Geng, who is the founder and president of the Cherab Foundation, a foundation that helps support people of all ages with apraxia.
What is apraxia?
Lisa: A Neurologically based motor-planning disorder. It goes by various names. It can affect speech. It can affect global abilities to do anything. The Hallmark of apraxia is the difficulty to do something on command.
How was it different helping your son with autism and your son with apraxia?
Lisa: The difference is as severe as his issues were, I always felt like I had the help and the answers from the professionals...I’d go to the doctor or the therapist and they’d tell me evidence-based treatment...But for my second son with apraxia, nobody knew what it was...I felt like I was all alone with this rare disorder, which the ironic part is that Penn State recently did a study that said that 64 percent of those with autism have apraxia.
On how apraxia is closely tied to other developmental diagnoses
Lisa: I realized, what we are calling apraxia today has little awareness even though it both stands alone or can be comorbid with numerous conditions including autism, cerebral palsy, rare genetic disorders.
In autism right now, you have parents that are so desperate...I try to keep everything in a public group so parents and professionals can share what they know works or doesn't work from all over. It doesn’t matter what the diagnosis is, many times similar therapy approaches are helping. Apraxia and autism are very weird diagnoses in that depending on where you live in the country and what type of professional you go to…it can impact when you get diagnosed and how you get treated.
On labeling someone’s abilities
Lisa: There is strong evidence to support that if I say this person is low-functioning or this person is high-functioning, that is going to change, even if it’s subconsciously how you treat that person and ultimately going to change how they perform.
A lot of times when a child has a communication impairment, they will lump together expressive and receptive. I made them remove that off of my son’s reports back when he was in preschool. Unless they could 100 percent guarantee that it’s receptive, which they couldn't, I wanted it off his report because he demonstrated understood what people were saying to him.
Advice to experts
Lisa: Treat the symptoms rather than the name.
What can Gaia do to help?
Lisa: I think what you can do to help individuals with apraxia is really just mentioning it when you mention autism.
Many children again with autism have apraxia whether parents know it or not, and many children with apraxia have sensory processing disorder and can also benefit from your product.
On her son Tanner with apraxia and his accomplishments (Tanner is now attending school at UCF)
Lisa: When he went to kindergarten, they didn’t think he’d make it into mainstream, and he ended up being an honor’s student 3.8.