Monday, May 9, 2022

Hard Work Pays Off

The most common question I get is: how did you start doing things in the community more? I will tell you, kind friend, it hasn't always been easy. Going out in the community as a family or even one on one with Charlie has been a work in progress over the years. Being safe and calm in the community are skills he has worked hard on for a long time. There was a time when we rarely took the boys out to do activities, and defnitely didn't take them out alone. Charlie had a very hard time regulating his body and emotions and couldn't be safe. He was a risk for eloping, riding in the vehicle even a short time was hard and sometimes unsafe as well. But with the help of some of his therapists we started working on skills so he could be successful. Things didn't change overnight. It took a lot of time. Some days we were successful, some not. There were times we really had to push because we knew we needed to, and other times where we had to pull back and take a break from going out. And this is a process we still go through. The times we pull back are always hard, feeling like a regression or that we're all standing still. But those are also times where we can sometimes see huge growth too. Sunny, Charlie's service dog, has also made a huge difference with Charlie. Sunny is Charlie's constant and helps him through transitions, she helps him stay focused and calm on car rides and helps him be safe in the community. The biggest regression we've had though was when Covid started. When time stood still and everyone stayed home. On one hand we knew we were already experts at being home a lot. But on the other hand it meant regression in some seriously hard earned skills. When we started leaving the house again it was an adjustment. Charlie had a hard time being out and about for more than a half an hour at a time. That was his limit before things went south. So, we started working hard on skills he needed to be successful and safe in the community. Except, this time, Tyler and I did it alone. Therapists and skills workers left their jobs at alarming rates over the last two years which left Charlie with very little therapy time. Yesterday was Mother's Day and my one request was to go out to do something. You see, I'm home with the boys all day everyday. I wanted to do something different and fun for Mother's Day. I knew there was a chance that the outing could be more work than fun, but I was willing to try. It turned out to be a good day. We went to a history museum with lots of hands on activities. Charlie rode in the car an hour and a half each way without a meltdown, we navigated the museum, he walked safely on the sidewalk to the restaurant we ate at, waited calmly for his food and didn't have to leave early. Did we have bumps in the road during our day? You bet we did. But we expected them and managed them as they came. What I'm trying to say is don't give up mama. Don't ever give up. Take a break if you need to, but then try again.

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