Phoebe Cielo’s Story

Our daughter Phoebe is two-and-a-half years old and, at the age of 19 months, she was diagnosed with Dyspraxia. After months of reading and researching on my own, we had an idea that it was Dyspraxia that we were dealing with. Phoebe had missed many of her milestones such as rolling, sitting, babbling and walking. She was worked up for seizures, stroke, Cerebral Palsy and many other syndromes and disorders. It was our neurologist who finally made the diagnosis of Dyspraxia.

Phoebe is behind in most areas giving her another diagnosis of global developmental delay. Her speech is at the level of an 11-month old, and her motor skills are that of an 18-month old. At almost three years old she still has very few words or sentences. I had already found from reading about the disorder that not a whole lot was known about it in this country at this point. Needless to say, we were very anxious about finding ways to get treatment and therapy put into place for Phoebe.

To this day, after living with this diagnosis for over a year, we have found it very difficult to get the proper services for Phoebe both through the state and the public school department. We have had doctors clearly state that she requires weekly physical, occupational and speech therapy but, unfortunately, even with “doctor’s orders” the appropriate treatments do not get put into place or are not covered by insurances because of the lack of knowledge about Dyspraxia. Medical doctors, clinicians, therapists and teachers are still not very educated on Dyspraxia and the proper ways to approach treatments and therapies. Children with Dyspraxia often get left behind both socially and academically because there is not enough awareness about the disorder.

Despite her abilities and disabilities, Phoebe has progressed very well, albeit slowly. She is a very social, happy and loving little girl. At times she can get easily frustrated, but we are working on ways to communicate with her. Right now we are using “touch cues” for speech, laminated pictures in a book and flashcards. All of these combined with the right therapists and the knowledge of the disorder are what will ultimately help Phoebe and other children like her succeed. Please do your part in raising awareness about Dyspraxia so that children like Phoebe do not get left behind or lost in the shuffle at school or in society.

Thank you for listening to our story. Phoebe thanks you from the bottom of her heart.