The money:  

There are many factors that make living in Barrow with special needs unlike anywhere else. Basically, living here and having to seek medical professional help = EXPENSIVE and very nerve racking. We have been very lucky with my sister and her getting the medical help she’s needed. But we have also been very active about perusing help.

Thankfully, now that my sister is an adult and my mother has guardianship. My mother can keep my sister on her insurance (she works for the Borough) and my sister qualifies for Medicaid. Medicaid paid for the medivac, airfare, hotel and doctor visits. Medicaid has made it much easier to get medical attention outside of Barrow.

Supports

The educational resources are slim to nothing up here. We don’t have an abundance of individuals with Down Syndrome. And it’s sad to say, but most families we have connected with up here do not have the same kind of support system as my sister. Unfortunately, many parents haven’t educated themselves on Down Syndrome. There are resources on the internet or through doctors when a person reaches out to them, but not smack dab in your face like other places.

On the other hand, the community has been very accepting of my sister, which has made it very easy for us. Our employers know how important my sister is to us and how we need to care for her, we’ve never had any issues with our employers when it has come to taking care of her.

The schools are accepting, but they aren’t equipped to handle little people like my sister. My sister is to always have a 1:1 aide, this year her aide has a very thick accent and has never worked with challenged children before. But we are making the best of it as we can, because what else are we to do?

My sister was able to participate in Special Olympics twice in the last 4-5 years, but that only happens if someone is willing to volunteer their time to keep that program going…

The Community

I believe because Barrow isn’t equipped to handle children like my sister or similar; that’s the reason why we haven’t progressed as could have. We’ve had a few good teachers from grade school, but the moment she left elementary and went into middle/high school, it’s been a babysitting service. It would be great if we could see more help through the schools when it comes to education for people like my sister. And not only for when the children are 18 years and younger, but for when special people become adults…that’s a whole new territory we are going into.

So, in short, living in a small rural area – we love it because we are a small community and everyone knows everyone. The cons make up a long list: having to fly out for medical, emergencies, not having the education setup for children with these types of disabilities, there aren’t events catered to our special little people.

There will be many challenges in the future with my sister for our family, because we are all getting older and life can pack things on. As we move forward, the only bit of resources we have regarding Down syndrome adults are blogs, articles or reaching out to online communities.