I agree with that statement that “we have to relearn how to measure success…” In the very beginning of this journey with my son and for maybe the next 4 or 5 years afterward, I was always looking for a sign that I could get him into classes, or get him into a part time job, or a group activity thing, anything really that seemed “normal” (whatever normal is) and seemed like more progress or growth (as we learn it through our lives) each time I pushed something, he might try it as best he could and then it would go wrong or he might just devolve and become unstable again…depending on the severity of the stress he was feeling…he wanted to work and wanted his own independence but eventually I think even he had to admit that it wasn’t going to work out.
I think the hardest thing for me and him was realizing we needed to get real comfortable with being a “team” he couldn’t change as much as I could so I scrutinized myself and became a lot less controlling in areas that weren’t going to end up in total disaster (very little does these days-thankfully) - but maybe things will be just a mild nuisance…I decided mild nuisance is workable…and I relaxed and I found my sense of humor again, even though it can be a bit dark at times it’s still funny and my son and I share that kind of humor…
After more than 12 years on this roller coaster ride I am STILL seeing improvements in him --little ones. He is more mindful of what he eats now, and getting his exercise in (so long as I go too) and he has lost a good bit of weight which I am excited about, he at one time was almost 310 and now he is about 270 and still losing, I told him when he hits 250 he gets a new mountain bike (250 is the weight limit on most all of them)
Discovering his responsibility with a bicycle will be a new adventure and a bit scary because sometimes he doesn’t pay as close attention as I think he should but we will cross that bridge when it comes. He also has become very empathetic at times towards my health, asking me about my diabetes and such which is really something, and really makes me feel loved back. He still won’t shower more than twice a week or brush his teeth more than once a day, but he is stable most all the time and we get along like loving roommates with a lot of mutual respect. I know that this is all a gift and to not take it for granted as I read so many stories of medicines stopping their effectiveness suddenly and without warning. I pray that never happens.
Today I am just truly grateful and so glad I fought as hard as I did to turn things around when I was told that everything was hopeless. I love that your screen name is “thereisalwayshope” because I couldn’t agree more.