Benjamin, as described by his mother is the happiest and most loving person she knows! At 2 and a half, his big blue eyes and huge smile bring joy to all that meet him. Benjamin has bilateral frontoparietal PMG (BFPP). Benjamin was diagnosed at 5 months after his parents, Jennifer and Brett Adams, grew concerned that he wasn’t meeting his milestones, he favored looking to the left, didn’t look midline, and he wasn’t using his hands. At 2 days old, Ben was diagnosed with bilateral congenital cataracts, and he now wears a special contact lens to have vision in his left eye.
Upon receiving Benjamin’s diagnosis, Jennifer and Brett got busy! They were able to get help through their state’s Early Intervention program. Since his diagnosis, Benjamin has been receiving physical therapy twice a week and occupational, developmental, speech and vision therapy weekly.
Ben has recently become involved in a therapy known as the Feldenkrais Method (http://www.feldenkrais.com/method/the_feldenkrais_method_of_somatic_education/) since July of 2011. Jennifer feels that Feldenkrais therapy is the glue that holds all of the traditional therapies together. In the Feldenkrais Method, Benjamin is taught to connect his movements with his brain.
In addition, the Adams have had tremendous success with Conductive Education. (www.stepstoindependence.org) Students learn to be physically, socially and psychologically independent. Peer interaction and support help children accomplish individual goals. Conductive education is a reliable method of building independence and functional motor skills. They will be returning to Conductive Education after Benjamin turns three and his Early Intervention services end.
Throughout the last two years, all of this has kept the Adams very busy while raising Benjamin and their two other children, Morgan (5) and Johanna (9 months). As many families with special needs children have discovered, the Adams have difficulty explaining to their children why Benjamin gets so much special attention. They had to convince their son, Morgan, that it is NOT ‘lucky’ to have a brain malformation or cataracts!
Benjamin is making steady progress! Because of the PMG, he also has hypotonia (low muscle tone) and will eventually be diagnosed with hemiplegic cerebral palsy due to his right side being slower than his left side. With all of those diagnoses, Benjamin’s hard work has been paying off. He is sitting up on his own. He is learning protective reaching. He is rolling and has just learned how to get from sitting up to laying down so he can roll around!! He is bearing weight on his feet; standing is now part of their daily therapeutic routine. With the help of his stander and gait trainer (special walker), Ben is really starting to get on the move! Ben is nonverbal but is pointing to things he wants and is starting to learn to communicate through sign language. He can sign ‘more’ and ‘eat’! He was probably super motivated to use those words as him mom describes him as a real ‘foodie’. While his oral motor skills are weak, he loves to try new things and enjoys a healthy, organic diet. Although he has cataracts, his vision is functional and he sees an ophthalmologist to follow his progress.
As with many who are affected by PMG, the Adams do not know the cause of Benajamin’s PMG. They have had every known genetic test and the cause currently remains a mystery. However, what they do know is that they are incredibly blessed to have their three children in their lives. One of the many lessons Ben has taught them is how sweet life can be if you allow yourself to see it.
You can follow Benjamin’s progress and story at www.blessingsforbenjamin.com.
