I come from a great family really. Growing up we spent a lot of time with most of my relatives, visiting and spending time. So it really comes as a shock when I stop and look around and realize that there really is no place for my family in their lives anymore.
I dont honestly believe it is malicious in any way. Life has dealt us a hand and we accepted that. But with the hand we were dealt there comes some concessions. We can not just go about willy nilly, everything must be planned to the last detail. We can’t just hop up and go to visit somewhere because the needs of our autistic son puts requirements in place that not everyone is comfortable with, and they can be a major imposition.
Our son is autistic, he is essentially non verbal and he also has the ability to be aggressive if he is uncomfortable or having a rough time.
Very recently I had the opportunity to meet up with an aunt of mine who was a particular favorite growing up. I felt uncomfortable and almost like a stranger. Life had created an accidental division between us that had led to me missing many extremely important events. Events that hurt badly to miss and yet events I had little choice but to miss. Largely because there was no way to accommodate the trip around our son’s needs.
There are a number of factors that hurt my little part of the family when it comes to keeping in contact with rest of our family. We are by no means rich, meaning long unplanned trips are often financially unfeasible. However because we are a family of five, tagging along with other family members becomes an option that is not as much of an option to us as it is to others. The family of five portion also makes finding accommodations for us during unplanned trips an extreme feat. Add to that the fact that those accommodations would have to be able to somehow be secured due to our son’s flight risk.
Let’s also look at our autistic son’s aggression and the unfortunate decisions we have had to make because of that. I missed visiting three of my grandparent’s as they got progressively sicker. This was because we did not dare allow him near them for fear he would strike out and hurt them. His striking out is seldom cause for real concern, more an irritation and bad behaviour to work on. However, with a sick or elderly person it could still be extremely dangerous.
And let’s be serious, all of this has led to us being less involved with our extended family. They understand the issues we face, so we are often not included on invite lists for visits. A large portion of my extended family have never even met my kids or my wife. At least not outside of one or two funerals, even though we live within a 4 hour drive. The truth is that realistically, we only have to look at my wife’s Facebook. You quickly realize how excluded we really have been from my family. The number of family who are not on her friends list (largely because they have never met her outside of a couple sad events) and have little idea who she is. It really speaks a sad commentary on just what kind of separation happens in families, when a special needs child gets tossed into the mix.
There are some good times too.
I should also add that there is one place we always feel welcome. When our oldest daughter was younger we received an invitation to attend VBS at a church we never attended. We decided that it would provide her with some much needed socialization skills. It has done that, but more then that. This church which we still do not actually attend, has opened it’s arms to us. It includes all of our children in their kids programming and making all necessary accommodations to our autistic son. Even allowing him to attend their VBS program, long after he is eligible. The smiles on their faces when they see how happy he is to be there does make a huge difference. The lengths they go to include the kids of people who do not even attend their church is something that definitely makes a difference.