It isn’t everyday that I feel alone, but I feel it’s necessary to share what it’s like for those of us who are non-verbal when we don’t have friends. I have many people in my life, and I am grateful for that. I don’t live alone, but I am in a time in my life when I don’t have everyday planned out. If we had chosen that I would stay in a program for adults with lots of needs, I would have my days structured by them. To people who are independent this may seem like a logical decision to be in a program where someone else determines the daily routine. But for me, it was oppressive.
I have a great friend who helps me during the day, so I am not entirely alone, but what I and others who are dependent on a caregiver experience, is that most people in our lives are employed to be with us. There is always fear that they will no longer wish to be with us, that their needs are different and that they no longer can be with us. When that takes place, it is scary because it takes so long for someone new to learn how to meet our needs, and even longer for them to really know us.
There are always people who think they know us, but the information about who we are comes from tests and observations that in no way demonstrate our potential and our hearts. I have met other non-verbal adults who don’t have the support and beliefs of their families. They are known only by their tests, and they live in an isolated existence. If it weren’t for the belief of my family and caregivers, my life would be limited.
I am happier today because I feel hopeful that we will find other adults who are given opportunities to express themselves-who they really are-and that we can share our love of writing, painting and the arts, like music. I want to find that today, but I know it may take some time. I am finding patience today.