In a picture-perfect world, once we receive our child’s diagnosis we have instant clarity. The diagnosis explains everything about our child and we never have to worry about anything ever again.
Unfortunately, this doesn’t always happen. Sometimes instead of facts, there’s more speculation…more questions…more puzzles to solve. This is what Megan was about to discover shortly after Carson received his diagnosis.
Getting the diagnosis
Ever since Carson was 2 years old, Megan strongly suspected he had a speech-language disorder. Unfortunately at the time, he was too young to get an accurate assessment. So when Carson finally got diagnosed with childhood apraxia of speech (CAS) at 3 ½, Megan wasn’t surprised. She’d been waiting for it.
CAS (unlike other speech and language disorders) has nothing to do with low muscle tone, and can’t be outgrown on its own. According to the National Institute of Deafness and other Communication Disorders (NIH), CAS is a neurological disorder.
Basically, the brain can’t seem to figure out how to send information to the mouth in the correct sequence. As a result, the child may mispronounce words, put the emphasis on the wrong syllable, add or delete sounds, etc. But none of these difficulties are related to oral weakness.
There are many unknowns about what causes CAS but in Carson’s case, doctors believe it is due to a gene deletion. They believe it’s a comorbid disorder unrelated to his cleft lip.
The benefits of a diagnosis
For Megan, getting the diagnosis was a breath of fresh air. It was finally good to get some answers because it made Carson’s disability real and validated his struggles. It guaranteed he would get appropriate help. There would be no more guessing games. No more throwing darts blindly on the board hoping one will hit the target and treat his symptoms.
The diagnosis put an end to all that conjecture and insured treatment would be tailored to Carson’s specific needs. In addition, Carson would now be eligible to receive early intervention services. So getting the diagnosis was a huge relief for Megan who’d been trying to find answers for so long.
Lingering unknowns
Unfortunately, the doctors didn’t have all the answers.
For example, they didn’t know all the symptoms that will arise from Carson’s gene deletion. The possibilities range from minor issues to some very serious conditions. But it’s too early to determine where Carson’s disabilities will fall. It’s a question only time can answer.
Another major question doctors were grappling with was if Carson had something called dyspraxia or developmental coordination disorder. It’s another neurological disorder dealing with motor planning/sequencing. But this time it’s how the brain signals the body to accomplish a task. Just like Carson’s apraxia diagnosis, it isn’t due to muscle weakness.
Unfortunately, this unknown creates a lot of ambiguity for Megan because now there may be several reasons for Carson’s struggles. For example, the unique way he grips his marker.
Dealing with ambiquity
Carson’s been diagnosed with hypotonia in his hands (and ankles) and now the doctors believe he may also have dyspraxia.
So Megan has no idea if Carson’s incorrect grip is a dexterity or hypotonia issue. Or if his brain sent the wrong signal to his hand and it’s dyspraxia. By observing him, it’s hard to tell which disorder is responsible for the behavior. This wouldn’t be a problem if therapy for both were the same. However, they’re not.
To muddle the issue even further, both conditions may be contributing to the problem simultaneously. Making it very difficult to know exactly what percentage of Carson’s grip issues is due to hypotonia and what percentage is dyspraxia. There’s just no way of knowing or even getting it tested.
So how do we cope with ambiguity? How do we stop ourselves from getting upset…annoyed or frustrated? In the next post Megan will share what she does to cope.