This was going to be my first tour to see the options for Robb's future, and I was sure that I would be in tears throughout the tour. We had heard this was one of the best places in the country, but the better it was, the more painful it would make our situation since Pathfinder Village really is not a realistic option for my family. First off, a five+ hour drive from my home is too far for us to be from Robb; even if this was absolutely perfect, it would be an almost impossible choice. Also, the money received from Social Security does not transfer to other states, so my parents would need to take on an unimaginable economic burden. According to Forbes, in 2016, the new graduate was in debt almost $40,000 on average, and these were people paying for just four years of college. Community living homes have similar annual costs, but these costs are paid for a lifetime. However, as my parents often say "we will figure it out," and I knew if this was truly the place where Robb would be happiest they would try to find a way to make it happen.
Going through the tour, I remember my spirits lightened tremendously. There were no tears, and I even gained a certain smugness. Obviously, I had to admit the facilities were nice, and although they did not have too many people who required a one-on-one, they did have that option. However, I was always told that when I went on college tours, I would know when I stepped onto my future college's campus, and I thought since I had not experienced that at Pathfinder, it was not the right place for Robb. Also, in addition to a lack of "feeling" it was right, I had come up with various other problems. It was upstate New York. It was cold. They did not have a pool on site. Clearly this place was not right for Robb. I made a list of all the improvements I hoped to see at the next place we visited in my head, and I smiled when I thought about visiting the even better places that were close to my house. I knew people had talked highly of this place, but I was certain this could not possibly be the best in the country.
I will never forget the tour guide walking away. I expected to turn around and laugh with my Dad about how we are lucky this is not the perfect place. In my mind, the decision became easier: Robb would stay in Maryland because the facilities there must be were just as good as Pathfinder. However, when she was out of earshot, my Dad started to talk about how this was the best place he had seen. He mentioned that he was not surprised as everyone had told him that this was one of only three places like it in the country (the other two being in Kentucky and Arizona). He called my mom and told her how amazing it was; he said she would have broken down in tears if she had been on the tour.
At first I felt sadness, but it quickly turned to anger. I feel angry that our society seems to believe that lower functioning people with special needs do not exist after they turn 21. There are only three satisfactory programs in the country, yet disabled people make up the largest minority in America. And at the same time I was angry at my ignorance. I knew that government programs are cut exponentially for adults, and I had seen firsthand that the fight for guardianship was a grueling process. However my entire life, adults with special needs and their actual day-to-day lives were completely off my radar.
I will never forget the first time I really considered the lives and needs people with special needs have after graduating. I was at Special Olympics with a friend who was really interested in seeing the program. We were waiting for Robb to finish changing so that we could leave, and I was explaining to him the wide age range of our athletes; our oldest athlete being around 60 at the time. When I mentioned the large number of adult athletes as they walked out of the facility, my friend asked me, "Where do they go?" i.e. Where do they live? What is happening when they are not at Special Olympics? What are they doing 99% of the time? I was speechless. I mulled over the loaded question in my mind, and the only thing that came to mind was a phrase I had heard once in a while: "assisted living." Then, with all the confidence of a self-proclaimed expert, I answered "Many people with special needs have assisted living." And that was that. I did not even know what assisted living meant, but it was a phase I could use to eliminate worry and thought on my part about Robb's future.
But now Robb is almost 21, I am left with the discovery that adequate "assisted living" is few and far between and truly amazing "assisted living" is more of a hope for the future than an actual option. With the palpable reality of the situation, I am unsure if we will ever find the perfect or at least perfectly adequate place. However, even through this process, I am reminded of how fortunate I am. I have parents that got Robb on lists that allow us to have options on Robb's future (even if the options are not ideal), that went through the long process to get guardianship, and that overcame the millions of other roadblocks faced throughout this process alone. I know that we probably will not find a truly ideal option for Robb's future by the time he turns 21, but nothing is permanent. Maybe we will change a program to make it ideal, maybe a new one will come along in the next 5-10 years that will be amazing. Maybe not. But through talking about the "rest of Robb's life" I know that all we really want is for Robb to be happy, and despite all the uncertainties and doubts, through the endless love my whole family has for Robb, I know Robb's future will have happiness.