By Lisa Geng, a parent of two (beautiful) late talkers, (one with apraxia) Founder and President of two nonprofits for children with communication impairments, Children’s Apraxia Network, and the Cherab Foundation , Co-Founder of Speechville.com, and Co-Author of The Late Talker book
I just received an email from a parent who has a child that is about 18 months old, is nonverbal, and was recently diagnosed with oral apraxia. She stated that she was a “blubbering idiot” because she cried, and I sent her this response, which may help some of you as well.
I remember that I went to a huge fair for “special needs children” that was a really wonderful and fun event for all the children, even the “normal” brothers and sisters that were there. I remember having a great time and then, all of a sudden it hit me that my son was invited there, like many of these other children, because he was “special needs.” All of a sudden it hit me, not that I didn’t know before, but up until then those words never meant that much, I guess.
I stood there, holding a hamburger for Dakota and a hotdog for Tanner, and I looked at Tanner who was smiling… and I started to tear. My baby is “special needs.” I knew I could have lost it, so I focused on something else and acted like I had something in my eye.
We didn’t ask for this when we decided to be parents; this is an added surprise. It doesn’t mean that it’s bad, it’s just not what most people go through.
Believe me I know what it’s like to go from “he’s just a late talker, but man this kid is SO smart, just look at him!” and believing he is completely normal, to finding out a day later that…
He is not talking because has a severe neurologically based speech disorder which is called all different names which can mean different things to different people since the medical and speech professionals and the world can’t agree on just one name so it’s called apraxia or dyspraxia or oral or verbal apraxia or oral motor disorder or motor planning disorder or phonological motor planning disorder but no matter which name you call it most of the world is still ignorant to it but if I don’t find out what he needs for appropriate therapy through insurance and school when it comes to speech and occupational and physical therapy as well as appropriate ways to educate him he may never learn to talk, and in addition he always had “soft” neurological signs like hypotonia and sensory integration that up until yesterday I didn’t even know existed and nobody not even his pediatrician ever knew he had and it took a neurologist and a developmental pediatrician to point these “soft” neurological signs out to us.
Sure there are warning signs of oral apraxia, which can be spotted long before verbal apraxia. Problem is that most people don’t know what they are. Below are a few of the signs of oral apraxia that our son Tanner displayed. Not every child with verbal apraxia has oral apraxia as well, but it is not uncommon. Outside of the obvious, the reason we believe that we need to include this page in this website is because parents have read about oral apraxia at this website and then, based upon the “signs” of oral apraxia they learned about, they took their 2 year old child for an evaluation, where the child was diagnosed with oral apraxia by a professional.
We have been told that besides this website, there is nothing else on the internet with Parent Friendly Signs Of Oral Apraxia.
To give you an idea what is out there now, here are two examples: This first one is a terribly complex example: a textbook definition of oral apraxia (link no longer working.) This second one goes to the opposite extreme of being an easy to understand definition of oral apraxia, but provides VERY limited information to say the least! If you find anything new you believe is parent friendly, please let me know.
If there is not information out there that can be understood by people outside the field of speech, then there should be, for important reasons. 1) Experts state that oral apraxia can be diagnosed as early as 18 months, which is over a year younger than a positive diagnosis of verbal apraxia is usually received. 2) For early intervention, “the sooner the better” for apraxia. Awareness should be raised about oral apraxia while we continue to raise awareness about verbal apraxia. Is oral apraxia a red flag to verbal apraxia? According to experts, almost every child with oral apraxia has verbal apraxia. So by catching these easy to spot warning signs early, we give our apraxic children the best possible chance. Overcoming oral apraxia gives our children a smile, overcoming verbal apraxia gives our children a voice. Below is a quote from “A letter to parents” which contains some of Tanner’s early warning signs of oral apraxia.
“…We decided that this diagnosis of apraxia finally explained why Tanner didn’t move his face much. He typically would just stare at you without any smiles. We called him the ‘serious baby’. Tanner couldn’t even lick his own lips! If Tanner had peanut butter or chocolate on his lip he couldn’t even lift his tongue to try to lick it off. Tanner would use his fingers to push the food on his lips into his mouth. Also, Tanner couldn’t blow the candles out on his second birthday cake. In fact, he couldn’t blow bubbles until almost 3 years old even though he tried and tried. Nobody, including Tanner’s Pediatrician, or his first Speech and Language Pathologist, knew these were all strong warning signs of Oral Apraxia, which can occur with Verbal Apraxia. There are professionals who are knowledgeable, you just have to find them.”
When a Medical Director for Early Intervention in New York, saw Tanner for the first time at 3 years old, she shook her head and said, “I could have told you a year ago this child had severe oral apraxia. He doesn’t know where his tongue is in his mouth!” She diagnosed Tanner with apraxia after a brief examination. The apraxia was never seen by Tanner’s pediatrician, and it took months for even a speech therapist to diagnose Tanner with apraxia! Tanner could have received appropriate therapy a year earlier if we had only known.”