A Seat at the Table

Where is my space? My place at the table to be part of the conversation? I come from a culture where autism is not openly discussed, grew up in a society where children with special needs were kept hidden from view and I'm approaching my life as the mother of a child with special needs with this background, the memories of these experiences. But I grew up, got wiser, fought to inform myself and decided I wanted to be more open, more forthcoming about what life is like for me as a mother of Haitian descent raising her son with autism. Yes, some of the struggles I face are similar to that of other parents caring for their child with autism but, in many ways, I confront an additional layer of challenges brought on by a lack of support and understanding of what life is like for special needs individuals and their families in the Haitian-American community. I am here trying to reconcile the then and the now and it's not really easy. I don't think people can really understand what I'm talking about unless they, too are dealing with the same issue. For me to find support, support as the mother of a child with autism, I have to go beyond my immediate circle of friends and family. I have to look to community-based support groups, attend meetings organized by autism-focused organizations or others. That's what I've had to do since I started looking for ways to help my son. It's not that those in your circles don't love you or your kid. They do. I know they do. It's just that sometimes, they don't really know what to say, what to do. I can't blame them for that. They are trying their best. I do appreciate all the different articles I receive in my inbox via email, private message, sometimes even in person. They may not understand the best way to help but they know that information and resources are essential tools. I am grateful anytime anyone calls my attention to articles, activities or organizations they think may be helpful. But... But it doesn't go far enough. It doesn't create this space where I feel understood precisely because of the different layers brought on by my culture and I'm not just talking about my own circles there. I'm also referring to those support groups I've gone to, the meetings I've attended. While they address some of the general struggles I face because they are fairly common in almost all families with autistic kids, they do not consider my personal story, some of the questions I may have because I wasn't used to some behaviors, wasn't exposed to them growing up. That's why I want a seat at the table; I want to add my voice to the conversation about autism from the perspective of a Haitian-American woman, who maybe cooks with different spices and, maybe handles some things a little differently at home. Whose beliefs and cultural background shape the way she approaches child-rearing, therapy and medical interventions. Whose child might be missing on some opportunities for lack of parental knowledge, although he is involved in sports and some other activities out of school. Of course, there are similarities between my experience and that of other parents raising their kids with autism. I know that most if not all parents, have had to fight for services for their child in the public school system, have had to pray for patience and call on the love they have for their child as he/she goes through a meltdown, have had to accommodate for special foods and singular interests. There are also differences, real differences that stem, not just from the uniqueness of each child, from the very individualistic way autism manifest itself but, from those cultural nuances I mentioned above. This is a part of my reality and it can complicate things further, can make it just a little harder to explain some of the challenges I face. And that's why I decided to go public with my experience raising a child with autism. I seek support. I hope to establish a connection with other parents of children with special needs, with autism, to increase awareness, knowledge, understanding, acceptance. I hope to continue my quest for information. I want to find my tribe but first, I want a seat at the table. I want to be part of the conversation.