1st Apraxia Awareness Day

Apraxia of speech is a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though:A.D.A.M.

• The request or command is understood
• They are willing to perform the task
• The muscles needed to perform the task work properly
• The task may have already been learned

Information courtesy of http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004944/

We’re new to Apraxia land but it is what is keeping my 2 year old daughter mostly silent. She says a handful of words. But her smile, her giggles, her cute way of saying "Stop" and putting out her hand to keep you away-- they're all so cute and negate the need to speak.

Apple Doodle is a twin, born prematurely at 36 weeks. She was diagnosed with torticollis at 3 months and we’ve visited a battery of specialists at the Children’s Hospital of Philadelphia. Our list includes: the neuro surgeon, a hematologist, an ENT, a developmental pediatrician (ruled out autism), and the neurologist. Apple Doodle has received physical therapy for torticollis and mild hypotonia (low muscle tone); occupational therapy to aide with the feeding problems & fine motor skills; and speech therapy at 12 months.   

For us, the first 2 years of my girls’ lives have been a road trip to a diagnosis for Apple Doodle. Our lives have been full of weekly therapies through early intervention, extra therapies through private providers, lots of drive time in the car, lots of coordinating schedules for 3 kiddos. This house runs well when it is on a schedule and routine. But it also runs better when my husband and I take time out to reconnect. We strive to go on a date once a month but usually it’s more like every 3 months.

Perhaps because Apple Doodle is still so young, having just turned 2, her lack of speech can still be perceived as “normal” to outsiders. It’ll have much more of an impact as she gets older. But for now, we’re doing all we can to get her what she needs. Apple Doodle is so smart, gregarious, and sweet. She doesn’t say much most days, a handful of words. Her speech is inconsistent. She actually says a lot without speaking. When she’s sitting on my lap nursing, she’ll pat my stomach or chest and say “My mommy.” Of course in typical 2 year old fashion, she’ll also grab a toy and hit her brother with it while saying, “Mine!” Perhaps her best and most frustrating trait is that she’s so independent, she wants to do everything, she wants to learn everything, but please let her do it! Apraxia, smaxia. She may be quiet, but don’t count her out.