Tuesday, May 7, 2013

Isolation and Families With Special Needs

Today I felt a bit lonely after remembering a few instances that have been isolating because of people with special needs in our home. A few of the things have happened years ago, but others are fresh and are still sore. After feeling sad for awhile, I called a friend who understands, a friend who also experiences the same kind of hurts.

It was good to talk to someone who also has experienced people distancing themselves because of a child's behavior. It's sad to see that when a person has autism, FASD, developmental delay, mental illness, or some other hidden disability, some people stay away from the whole family.

Sometimes the distancing is obvious. People say things that are hurtful. They treat our children as if the child would change their bad behavior if they were disciplined right or we were better parents. People don't understand that someone who talks too much, or who swears, or who scowls at others may be doing their best to cope in a social situation. They then give advice that my be good for the average child, yet doesn't work for mine, sometimes right in front of the kids. Do they really think I've never told my kids how to smile in greeting, how to interrupt a conversation, or talk politely to adults? They make it pretty obvious that they don't want our children to "infect" their children with unpleasant behaviors. This makes sense for kids who are young, but like my friend said, "I doubt if their teenagers will hear anything new from your kids that they haven't already heard in youth group."

Other times the distancing is more subtle. People say they would love to get together, yet they are too busy right now. They agree with us that we shouldn't bring our children to certain events. Our kids have different interests. My kids wouldn't enjoy being with other church kids. Things are said with a smile, in love. Then there are the looks of relief when I show up without the kids. Sometimes I wonder if I am making it up, but then realize that no, they really don't want our kids around theirs.

Of course, sometimes I isolate myself. When our kids were swearing like truckers when they came to our home, I made sure they didn't go to Sunday school with other three and four year olds. When my kids are dysregulated, we don't go places because they need a quiet environment to calm themselves. I try not to commit to certain events because I need the flexibility to stay home if my children are having a bad day. Other times I'm just to tired, or I don't really believe people want to be with us.

Thankfully, I do have friends who truly understand our family. They don't want us to be isolated. They love my kids. They even invite our kids into their homes! Too bad most of those families aren't Christians, though I'm thankful a few are. Isolation is such a drain on a family with special needs, so I'm thankful for friends who don't let that happen.

1 comment:

  1. Wow. This is weird. The morning after I wrote this, I find an article on parenting a mentally ill child. The writer, too, talks about the isolation families experience. http://shine.yahoo.com/parenting/child-mentally-ill-143800211.html