I was sharing the story today of my father’s visit and Danny.
It went like it usually does. Lots of attention paid to the other two kids and perfunctory acknowledgement of d.
But I knew how to counteract that.
I insisted we all go to the train museum. Danny loves trains. It is easy to connect with even the most random strangers at certain places.
Danny loves his family. He adores sharing with us the things he loves. He is patient with us when we make him do the things we have to. But if you are lucky enough to be with him when doing something he loves, you can’t help but see the young man behind the challenges. The real d.
We, as a family, went.
While the five of us kept up with d and allowed him to show us his favorite places…..slowing down to be on d time.
My father and his wife experienced the museum. Wandering and reading.
Completely missing the entire point of the outing.
Which was slowing down to share the experience with d.
Danny doesn’t have a “social deficit”. We do. We expect him to always fake interest in what we find important.
If you slow down to “Danny time” you realize how incredibly social he can be.
Unfortunately most everyone is too busy living their own lives to stop and actually experience life on d time.
Take it from me.
You are totally missing out.
I do not find Dannys issues near as challenging as managing the people who are supposed to be here on his behalf
Right now, I have the “home” and the “medical” portions of Dannys team all lined up. Crazy qualified folks are surrounding Danny under those two headings right now. We’ve even, finally, worked through the bumps of moving Danny’s behavorial budget to a new payor.
There is a third piece of Danny’s team.
The “school” piece.
I tell you.
Trying to be proactive to be in touch with folks at the home bound office at the district is never easy. The turnover there is rediculous. And they never actually staff him as his IEP is written.
Even just trying to get a copy of the initial paperwork for the doc to sign because his IEP placement is actually on home bound is a logistical nightmare. One that has taken three phone calls last week and a follow up one this morning and still “someone will get back to me this afternoon”
(Insert eye roll here)
Only three more years in the school system.
I will be glad when those three years are over.
The last couple of years, I’ve withdrawn socially for many reasons.
Honestly, the only folks that I hang with now are my 4 immediate Martians.
Jack asked Hugh to hit mount Evans.
And just the two of them. Which I totally support.
The time is limited to hang one to one with Kate and Jack.
But nope nope nope. He doesn’t does not want d and I tagging along.
I’m encouraging it after Hugh’s long run. These one on one opportunities are so limited anymore.
But it sucks to be the buzzkill.
(It’s been a few weeks since baseball season ended, no wonder Jack is missing some dad and he time)