Our courageous hero underwent the VMPAC (Verbal Motor Production Assessment for Children), which was a formal assessment for apraxia. He did the entire test in one sitting, and he came out of it smiling. Amazing stuff! So, the test got scored, and if Noah didn’t carry the diagnosis of Down syndrome, he would definitely have the diagnosis of apraxia.
But since apraxia is technically (depends who you talk to) a condition only present in the absence of other neurological conditions, Noah doesn’t carry the diagnosis of apraxia. In fact, because the has Down syndrome, he never really should have been given the test to begin with. The reason it was administered was because I’ve been pestering his speech therapist to formally assess him for apraxia for a year now. So, I think it’s safe to say Noah has all the verbal features of apraxia, but he probably will never be diagnosed with it.
The bright side? Well, the speech therapist Noah has been working with is an expert in PROMPT therapy, and that is the method he has used for the past year. I searched him out when I became convinced that Noah had apraxia, and I think his use of PROMPT is the exact thing that Noah needs. So diagnosis or not, his treatment is consistent with that of apraxia.
I don’t know why this issue of diagnosis versus no diagnosis is so important to me. I guess in a way it’s the first time Noah has been excluded from anything based on his Down syndrome. Not all kids with Down syndrome have apraxia. Kids with apraxia do not tend to progress without very specific apraxia therapy. There are thousands of kids out there who have Down syndrome and are not progressing in speech therapy, and it is being blamed on their Down syndrome. In talking with countless parents of these children who have not progressed with conventional speech therapy, I am convinced that the majority have apraxia-type symptoms. They are not being considered or treated for apraxia. I was fortunate that Noah’s first speech therapist was willing to use Kaufmann cards with Noah, which are part of the Kaufmann Apraxia Protocol. She too was uncomfortable diagnosing Noah with apraxia, but she was willing to use apraxia materials with him.
This is my opportunity to plead with you speech therapists out there and parents too.
If you have children with Down syndrome who are not progressing with traditional speech therapy, DO NOT WRITE IT OFF TO DOWN SYNDROME. These super-kids with Down syndrome who are speaking so clearly – I’m betting they do not have apraxia symptoms. Apraxia is TREATABLE!!!! If you suspect your child has apraxia, ask for a formal assessment, if for nothing else to get an objective black-and-white record of all his features consistent with apraxia. And then it may be best to avoid the apraxia/Down syndrome argument, but insist on apraxia-based treatment to address the motor planning and sequencing issues that treat apraxia symptoms.
Speech and language pathologists – I know it’s political, and I know it’s a hot topic, but please, please, please, look at the evidence. We need to look at apraxia differently, and we need to get objective diagnoses of apraxia even in the context of dual diagnoses. Children with Down syndrome with apraxia or apraxia-type symptoms NEED apraxia protocols. We lose such precious time when you dismiss the possibility of apraxia and insist on traditional speech therapy methods. Look at these kids with an open mind, and if you are seeing apraxia, PLEASE speak up! Our kids with Down syndrome need SLPs who will advocate to diagnose and treat them no matter what their co-existing diagnoses are. May I humbly suggest that it is time to redefine the term “apraxia” in order to secure the treatment these kiddos so desperately need?