This past weekend Alex and I traveled to my hometown of Princeton, New Jersey. It is a beautiful town located midway between New York and Philadelphia.
The locals say there are two types of people who live in Princeton, those who are affiliated with the University and those who are not. Those who are not are commuters, many to Wall Street or other successful careers in the New York metropolitan area. Thus Princeton is a fairly wealthy community with the intellectual influence of one of the greatest universities in the country.
I always have a nice time when I go back East. My mother and two of my sisters live in the area, as well as friends from long ago. I feel at home and comfortable, but more than that that I feel connected. Alex gets along well with her aunts and cousins; she is included and accepted by our family, and the community. It really is a welcoming place.
As we get closer to our court day to formalize our guardianship of Alex, as well as our appointment at social security to apply for disability benefits I find myself thinking about Alex’s future, perhaps too much. I have a feeling of melancholy and I am not sure why. Adulthood for Alex is taking over my day dreams.
Do we live in a community where Alex will have opportunities for employment and social activities? Is our community just too small for her to find a group of people she is comfortable with and possibly a romantic interest? Will she feel isolated as she gets older and there are less and less opportunities for her? Will she be connected to the greater community? The doubts go on and on.
Sometime I feel the struggle with our rural school district has depleted my energy. Is this a portent of the future? Will I always have to advocate for Alex? When will people understand that every person with disabilities has gifts that should be shared? Will I ever stop hearing “we can’t do it”? Do we live in the right place? Should we move back to Princeton? Are we truly connected?
To be clear, I do not want to move, I believe our community is welcoming and has the potential to become very inclusive. We live in an area with more not for profits per capita than anywhere else in the country. Our economy is supported by the Aspen area second home owners, and most of these home owners are extremely wealthy, and give back to our community. But then again, if you pay 10 million for your ski house, shouldn’t you?
There are recreational opportunities galore for people with disabilities. Alex skis, rides, rafts, and participates in every sport we can throw at her. This is one of the hugest benefits of our community. But is that enough? Do we need a larger support network, perhaps one located in a large university town, where we are surrounded by friends and families? A place where services are abundant. I am told New Jersey ranks as one of the top states for services for people with disabilities,such as job training and housing options. Do we live in the right place for Alex as she grows into adulthood? Once again, should we move?
I am suffering from the grass is always greener syndrome. I want the best for Alex, but I have no idea if it even exists. A utopia where everyone is equal, has equal opportunity and feels connected. For me where we live is pretty close to heaven, for people without disabilities, but that does not mean everyone.
So, for now we will work with what we have to try and change our approach to support for people with disabilities. We will work so we all feel connected and hope we can create opportunities for everyone on the community. I will not give up my daughter’s future.
Valley Life for All may just be the answer. I will share in my next entry.