Our life with John has been the journey of a lifetime. We first learned he would need extra help when he was just a few months old. While we saw all the doctors then and now, John has never had a diagnosis. He doesn’t have a known condition – he just has symptoms. Without a diagnosis, there has never been a prognosis. So, all the doctors could tell us was, “We don’t know what John’s potential is, but what you can do is provide all the supports you can to help him reach that potential”. We followed that advice then, and we still follow it today.
Its been quite a journey. We have lost count of all the therapist offices, doctors and tutors. On most weeks throughout his childhood, John had 3-4 appointments. John has had 13 surgeries. He has been a Special Olympics athlete since he was a boy. We started with MCPS, then enrolled him in the Katharine Thomas School (KTS). He attended KTS for 10 years, graduating from their high school that we helped start, and then spent 3 years in the GROW program at the Riverview School in Massachusetts.
John is 26 today, and a success story by any measure. Thanks to Project SEARCH, he is a federal employee, working 20 hours/week on the maintenance team at the National Museum of American History. John loves his job and it gives him the purpose and identity that any adult needs. He rides the Metro on his own to work, getting up and ready each day without supports. He has never been late except when the Metro has had major delays. (OCD is often his gift!) He lives in his own apartment, with supports, in Rockville Town Center, just a few blocks from the Main Street site.
Even with his success, John will benefit immensely from the social richness that Main Street will offer. Like any young adult, he needs a place where he can find his peers and his peers are other adults with intellectual disabilities. There is no such place today. Main Street, uniquely, will provide a social space where relationships can develop spontaneously, outside of the organized activities that dominate John’s social life today. John, and his peers, really need a place like Main Street.
We are not waiting for the Main Street building to start building relationships. We are beginning now. We are active Main Street members and try to participate in every activity. It’s fun for us now AND it helps us help John build relationships with other Main Street members. We have already renewed our Main Street family membership for another year.
Life with John has transformed our family. We call them John’s unexpected gifts. Today, we are all active in the special needs community. John’s mom, Shelly, after volunteering with Special Olympics for more than 15 years, is now Area Director for Special Olympics Maryland – Montgomery County, overseeing programs for 600+ athletes across 23 sports. John’s dad coaches two sports, snowshoe and bocce, and serves as Treasurer for Special Olympics Maryland – Montgomery County. John’s dad is also a longtime Board Member for the Treatment and Learning Centers (which operates KTS), moderates the alumni parent listservs for both Katharine Thomas and Riverview, and serves as a member of the Main Street Task Force. John’s sister Christina earned a Master’s Degree in Early Childhood Special Education and currently teaches a kindergarten class for children with special needs in Ypsilanti, Michigan. It is hard for us to imagine how different our lives would be if John had not been our son. We feel lucky!