by Laura A., Christopher’s mother (edited for content and clarity)
At two years old, our son Christopher was diagnosed with Fragile X Syndrome. When we began our path of learning and therapy, it was hard and very different from how it is now. In the beginning, I remember Developmental Pathways being the only ones who called to see how things were going; that frequent contact made things better.
School and activities were challenging for Christopher due to some difficult behaviors. When Christopher left school at 21, transitioning from child to adult services was like falling off a cliff. We didn’t know what to do, but we found support through our Case Manager and the Family Support Services Program (FSSP) at Developmental Pathways.
FSSP provided us flexible funding for respite and other activities. Because Christopher never qualified for the CES waiver, the flexible funding was beneficial for us to use for therapies, respite, or adaptive equipment we needed at the time.
For the past eight years, I have been a member of the Family Support Council (an advisory committee for the Family Support Services Program) with other parents and guardians who have children served by DP. Even if our children have a different diagnosis or story, it has been so helpful meeting these families and learning more about advocacy.
The first Day Program that Christopher tried was not a good fit. In frustration, he damaged some property. For six months, Developmental Pathways helped us navigate the situation to compensate the day program for the damages and find us a new option. If it weren’t for Developmental Pathways, we would never have been able to get through that.
After three unsuccessful day programs, he is finally in a place where he is thriving! Christopher now attends Treeline Pass, a Program Approved Service Agency (PASA), and now has behavioral support and is successfully reaching his goals. It’s encouraging to see him at the point where he is progressing and working on independence. He is even working at the Arc Thrift Store, pulling hangers off the coat racks, which he enjoys.
Since Christopher started adult Medicaid Waiver services, we’ve had several case managers. While at times it was hard to readjust, I have to say all of them have been exceptional. I’ve always found them to be very supportive, frequently asking us what they can do and how they can help. They’ve been the most incredible resource. Christopher has been through a lot. I love Developmental Pathways – it’s a wonderful organization of people who care about helping individuals with I/DD.