Ten years ago today, I wrote my first blog post. I have written 106 posts and the blog has been read 35301 times. I never would have thought that I'd keep writing after she turned 21 but I do find it helpful for my own processing, to put things in writing, and I very much enjoy hearing from those who have taken the time to read a post here and there.
When I started writing, our gal was not yet 21 and she was still in school. We loved her school and the idea of her leaving was truly devastating. When she was finally outplaced it changed our family significantly for the better and losing that support was scary. We were also struggling with the idea that chronologically she was going to be considered an adult when developmentally she was considerably younger. Much younger. We were beginning the process of finding her an adult program which was stressing me out significantly. I've always enjoyed writing and my thought on starting this blog was first, that I could get my own thoughts more organized if I wrote them down. Second, that l may be able to educate others on the realities of our family life which would perhaps then lead people to offer a bit of grace and kindness toward families like ours and ultimately this would then lead to a better quality of life for her. In terms of helping me to organize my thoughts, this blog has met that goal over and over and over again. That being said, I am not sure much has changed in the big picture, in terms of attitudes toward autism and families like ours but I do feel that people who have taken time to read a post or two may go away with some bit of new information or a new perspective, and that is enough for me to continue to want to write.
Life has certainly changed for our family since she turned 21. She has been in two adult Day Programs (the first was a bust) then Covid came along, and we made the decision to completely pull her out. Once she was able to be vaccinated (feel free to find that post as it was an interesting and complicated journey) we started to completely self-direct her program and three days a week she goes to a farm and the other two days she is with me. We have had behavioral supports over the years though currently that is less "official" and is more of an "as needed" basis due to administrative issues.
What has not changed is that she is still living at home and will be for the foreseeable future. Her sister has moved out and is living independently nearby and is very much involved in helping to care for her sister. RJC continues to gain skills and I often shake my head and think about the professionals who told us she'd "never" (fill in the blanks with many verbs). Though I understand that was truly the belief back then, I am glad that my stubborn genes kicked in (trust me, the women in our family are stubborn) and instead of shrugging our shoulders and accepting that news, we did research, we fought the system when necessary, and we are still continuing to find ways to advocate for our gal as well as for our community.
The big difference? I am SO much more tired than I was ten years ago. But we are her voice, so tired does not matter as the journey continues.
Ten years from now I cannot imagine what I will be writing, just as ten years ago I had no idea our journey will have led us to this moment in time. We are grateful to family and friends who have offered kindness, support, and love our way.
