Tuesday, June 2, 2020

This Journey

There's no doubt this journey we're on is different.  I've even become comfortable in saying it's hard sometimes.  And it's ok for me to say that.  It's ok for Tyler and I to acknowledge that autism can be hard which doesn't mean we love any less.  But mostly life is different in our family.  Such different experiences than most families.  We've always known this, but today it really hit me. 



We have a new respite worker starting today to help Tyler and I throughout the week, specifically during the Summer, but possibly other times as well, to give Tyler and I a much needed break.  Throughout the years we have relied on family and close friends to watch the boys for date nights or the occasional weekend away.  But we also didn't want to take advantage of them or expect them to watch our kids all the time. 

The last few years we have hired respite workers to help us- mainly because we can't rely on the teenager down the road to babysit our kids, our needs are so incredibly more complex.  The person we have in our house helping us needs to have long experience in watching kids, possibly a background in special needs and definitely needs to be able to handle various behaviors and know how to respond to them.  We've known for several years that this just isn't your typical babysitting job. 


But what really hit me today is that even if our respite workers come to us with special needs experience, we still need to train them and give them background on our kiddos.  It hit me that most families probably don't spend several hours going through various intervention options for meltdowns or what to do with destructive behavior.  Most families don't need to talk to their babysitter about what to do when their child shuts down or that sometimes their child is a runner and how to deal with that.  Most families don't talk through what their child's goals are with their skills worker so they, too, can work on those goals with him.  As I talked with our new respite worker today about sensory input that Charlie enjoys and different forms of therapy tools that he uses, I realized how typical these conversations are for me and for Tyler too and that most people don't have conversations like this when a new babysitter comes over.  

We have been fortunate to have some amazing respite workers the last few years, all who have really stepped up to the plate in some difficult situations.  And all of them loving our boys no matter what.  This is the first year our respite worker wasn't previously known by us before they started working with us.  New territory here, I tell ya!  I pray that we continue to have really good people in our lives that can be here to help us when we need it, because trust is not easy to come by these days, especially when it involves your special needs child.