The greatest benefit of FamilyConnect is hearing that there are families out there with the same types of children as me. It is a way to connect with a population that is few and far between. Just the other day, a mother commented on one of my blogs that her daughter was my son’s twin. Wouldn’t I love to meet them!?! Even though we are not connecting face-to-face, we ARE being connected. That feeling of isolation minimizes every time I hear those types of comments.
I purposefully said minimizes, because it never really goes completely away. Since my son was born, I have struggled with the lack of connections in the regions where I have lived. Previously, I have tried to help start-up local organizations for families that have children with visual impairments. Everyone was very excited in the beginning to form strong bonds, but that excitement faded quickly and support mostly died out.
Initially, I thought this was the nature of a rural area, but it seems to be happening in urban regions as well. I have had many conversations about why that is. We are a small community of families that have a great thing in common. Why aren’t there “support” groups and organizations popping up all over the place? To answer that question, I do have a few theories.
First, our children are VERY unique. Blindness is usually a small thread that links them together, but often multiple disabilities make them all individuals. We’ve all heard the saying, “If you’ve met one child with autism, you’ve met one child with autism.” That exact saying is true for children with visual impairments. Their needs are great and varied and one child’s strengths could be another’s weaknesses. When we first meet with another group of families connected by visual impairments, we are looking for our “twin.” However, the likelihood of that is slim to none. That realization can be disheartening, and can keep us home when the next event rolls around.
Second, just because we may meet other families with children like ours, doesn’t mean they will become our best friends. In the big picture, our child with a visual impairment is a very small part of who we are. We also come from different backgrounds, cultures, beliefs, and personalities. We may have some common struggles, but overall we are as unique as our kids.
Third, much of our life can be taken over by a child with a visual impairment. Even though the idea of forming organizations with similar families sounds great, it also sounds like a lot of work. When we are compounding therapies, school, extracurricular activities, and doctor visits we really don’t want to add another thing to the list. Life can already be too busy and overwhelming.
With those thoughts in mind, I am still not giving up on the idea of a local family organization in my area. I think there is value in it beyond measure for not only my son who is blind, but also for his siblings, for myself, and for his Dad. That being said, I have to own up to my third reason listed above. I am SO busy!
Even though I cannot make it happen today, or even this school year, it is a personal goal of mine. Next fall, I hope to work towards a local organization that will minimize that feeling of isolation even more. To be honest, I want to vent or cheer to somebody else that has been in my shoes (or at least in my shoe size), and I want to do it in person. So, for those of you that are members of local organizations as great as FamilyConnect, tell me how it’s done. Share your secrets of success so when I get my feet under myself, I can run with it.