Written by Jessica Frew, this book is about her experiences growing up using a communication device, including the challenges she faced.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Oropharyngeal dysphagia, or OPD, is an impairment of the oral or pharyngeal phases of the swallow. This can impair muscle movements and coordination of the mouth, such as the lips, tongue, jaw, cheeks, palate, and also muscles of the pharynx and the entry to the airway.
Weight, height and body composition are important indicators for development. The tools used to measure these can be different for children with cerebral palsy.
Children with cerebral palsy (CP) often grow poorly and assessment of growth in this population is further complicated by two main difficulties. Firstly, children may have joint contractures, muscular weakness, scoliosis, and/or involuntary movements that make standing or lying straight difficult, if not impossible.
"Cerebral palsy is primarily a motor impairment so it's really important to look at what the child’s motor function is. Are they developing on the trajectory of a child who has cerebral palsy or are they developing as we would expect a baby to develop? "
