A Sense of Community

My sister invited me to her granddaughter’s (she’s 2) birthday party. I love to go because there are always lots of kids and it is outdoors. She bought a bouncy house and said I could use it for my boys’ birthday parties if I wanted to. Oh, major downer for me. I thanked her and said, “I guess you don’t understand that because my children are special needs, their social circle of age appropriate friends is smaller. We usually have family parties.” Actually, I’m glad she didn’t understand because she always includes our children in family gatherings. I make sure we have the means to deal with the need for a hasty exit if needed.

We home school and our twins, age 8 are both special needs. Vinnie is blind. Brandon has hydrocephalus and a seizure disorder, along with vision issues, all of which are stable at the moment. Whew. We’ve had a 12 month period of stability after 2 ½ years of multiple shunt surgeries and daily seizures. New shunt and new seizure meds finally mesh and we are golden. School is going great for both boys. All these medical/developmental issues can be limiting in terms of social/community activities. It would be just as limiting in a school setting, only with more people around and I’d have to worry about one of them getting sick and hospitalized.

What happens to parental socialization and community activities? We find church a great source of socialization and community. Our local Community Theater does a great job with inclusion. There are activities for all ages and abilities, with a kids’ play in winter and 4 weeks of summer Theater Camp. My husband and older daughter are involved in community band and a Brass group. We all go to the concerts and plays. We like to host gatherings. It is easier to deal with a problem as it comes up without everyone going home. There is, “No one size fits all”. Our church does something called, “Balloon Buddies”. They pair a senior with a child. They exchange information and celebrate birthdays and holidays with a card and/or acknowledgement. Once or twice a year there is a reception/party for balloon buddies sponsored by the Sunday School. It really makes both feel special and provides another facet of community which is mutually beneficial.

Providers are also people we rely on to help us and guide us. Our TVI comes twice weekly. She provides education for both my son and consultation to me and other providers. The occupational therapist works on fine motor skills, independent living, ADLS, as well as a consultant for me. Speech Therapist works on a consulting basis with me and the TVI.

Orientation and Mobility is kind of a mix of all of the above. She and I work to incorporate school lessons into O & M sessions. Since it has been cold (many days below zero) and snowy (measured in feet or yards), getting outside to practice cane skills is kind of difficult. One of the lessons we coordinated was a trip to the bank to deposit money earned through school. We set this up with our local bank manager on a quiet day. They also go regularly to the library. We are brainstorming other options close by. These folks are essential to our home school. We could do it alone, but these folks make it so much easier and a lot more interesting and fun.

How could we forget the medical providers? We see them frequently. It gets me out shopping. Never waste a trip. It is a chance for some 1:1 time or an “individual date”. Because we are rural we have to drive 2 ½ hours to the specialist and there are 4. We knew that when we chose to live here 4 years ago. The benefits outweigh the inconvenience. Maine is a large rural state.

You all know I love family gatherings. This takes on more significance at least for me as I get older. I value those relationships. They are the ones who are most likely to accept my children as they are. We have great neighbors who are like family and we all watch out for each other. Then there are the musical groups, with Brass rehearsing on our front porch in summer. Nothing like a BBQ, porch concert, or a bon fire, summer or winter!

I enjoy support group, even though it is geared towards adults. WE share a lot and are learning from each other things that are helpful to both of us, especially technology. They even invited Vinnie to give a demonstration of his Smart Brailler. He did it which was even more incredible. The group is working within the community to make walking safer, by adding cross walks and changing some of the traffic flow, which they found to be dangerous. This is such a diverse group, which makes it all the more fun and interesting. It gives me a glimpse into the future too.

The internet has connected people in so many ways that were not possible just a few years ago. They are my go to source when I have a question or need to find something specific. They are a great educational resource. It is a good way to stay connected to friends and family far away. There are just so many options!

My favorite thing is traveling in the motor home. Since we are retired, we have more time to do these things. I love RVing. The whole family can go and be in our own beds. Again I can make those quick adjustments as needed right on the spot. We see and experience so many wonderful things. WE have met and made some great friends along the way. If the situation goes south, then you make a hasty retreat and never see them again, LOL. Seriously, this is a great way to socialize and experience new things along the way. Best source of Social Studies I know!

How big is your community when YOU add it all up?