Friday, March 29, 2019

We can help you

We can help you.

We understand if you don't understand a lot about Autism. We're all continuously learning. We understandable if you don't know a lot about rare disease. We're all continuously learning. We understandable that when you've raised your own children you might think you understand raising three sons. It's understandable to think that one might compare their own experiences and think ours are the same. It's possible that in being helpful someone might think they know what our family needs.

It's very probable though that you might be wrong.

It's not a bad thing to be loved. It's a very good thing. It's not a bad thing for family and friends to invite us to things, or to want to see us. Often times, I am very relieved when you want to come to us instead of us coming to you. I've often told people thank you for forcing us to have you over (LOL). But honestly, it's a relief.

Picture you're a child with Autism or a rare disease. You spend all day "working".  Working hard to comply and behave, working hard to get out of your car and go into school without issue. Listening, trying to communicate, being out in public with people all day long. You're working hard at things people "just do". When you're done working, you want to rest, maybe be alone, maybe do things like run or a preferred activity like watching a show, and you want to do as you choose, and not have a lot of "work" associated with it. You have to work at being brave. You have to work at tolerating things no one should have to tolerate. You comply every week with a treatment that lasts hours. That's your work. Then your parents in their effort to do things want you to go to the grocery store, want you to ride along while we take your brothers to something, or want you to go to a party or event. But, that's not your thing.  You'll have to work at it. It will be work. Now you're working all the time, and it's exhausting.

And the parents are working a lot too - working here, working there, working with you, working out there, all over the place working. Often, to make your thing work we're offered babysitting or time away from our kids.  That's not what we want. It also ignores our basic needs to spend time together, get basic things done without having to work at it and replaces it for where you want us to be. That's great for you but not for us.

We don't want to work hard at living. We just want our downtime to be less work.  Hopefully this helps you understand what happens when you ask us to be somewhere, and why we don't attend much when it requires one of our kids to work really hard. We just want to relax in our downtime and enjoy life with you in it but let's just curtail the work!