Devon Jacob Gardner just turned 4 in March. He continues to amaze his family, friends and teachers with his achievements and his wonderful disposition. Devon was finally diagnosed with PKS by a skin biopsy when he was 16 months old. This was after months of testing to try to figure out what was leading to his delays. I believe we knew early on something was going on with Devon since he had a different face structure, low muscle tone and was not making his milestones anywhere close to “schedule”.

Despite not having a diagnosis, we were blessed to have an aggressive pediatrician who recommended physical and occupational therapy at 9 months. At that time Devon was able to sit up, although hunched over, but had no interest in toys. Through a lot of appointments and a persistent physical therapist, Devon actually put weight on his legs at a little over a year and took an interest in toys. By 17 months we had him crawling (with a lot of direction, and three of us working on teaching him). By 2 years, two months Devon took his first independent steps. It was the best mother’s day present I have ever received!

Devon has never looked back. He continues to gain strength and his balance is solid. He still lacks in upper body strength and relies on his legs to “pull” himself up. We acknowledged early on that Devon is on his own timetable, but with repetition and patience he continues to show slow and steady growth. We started with a speech therapist at two years old and he can now sign several words as well as verbalize about half a dozen real words. Our latest strategy is to use pictures to encourage communication. This has cut down on a lot of the frustration on not being able to verbalize.

Devon receives therapies through a state run program such as occupational and speech. We were fortunate to also be approved for a waiver that has allowed him to qualify for help with private therapies. (Speech, Occupational, Music) I am the conduit that brings both private and public together, so there is one message everyone is sending to him. Devon goes to an integrated preschool five mornings a week. Children with special needs are part of a class with other children that are reaching their milestones. I believe this has helped “push” Devon to new levels. He can scribble on paper, cut with a rope scissors, follow directions such as hanging up his coat, and go to a big circle to read books. It has been wonderful to see what he has accomplished this school year with the direction of a very committed preschool teacher. The teachers and the aides actually compete to see who will work with Devon. He is such a fun child, with a great laugh and amazing smile. You can’t help but laugh at some of his behaviors. Devon still is significantly behind his peers, but we are thrilled with his progress! He continues to amaze all of us.