On this week's episode of normalizing differences, a piece of mail that arrived while we were in Maine was confirmation of H's first annual re-filing of his Guardianship. (Yes, papers need to be re-filed every year. It's an abbreviated process compared to the initial filing, but it is not a one-and-done thing.) We submit an annual report of well being, accompanied by a doctor's certification. The timing of our re-filing just happens to coincide with Back to School & because I know so many people with same-age young adults, my social media feed has been absolutely flooded with dorm tours, parents coping with leaving a piece of their heart in another state, or adapting to becoming empty nesters altogether.
I am adapting to another Chapter of Different, too, but in this story my young adult is not going off to college. I've thought about somewhat re-doing Hayden's room & allowing him that excitement of his own room tour, ahead of starting his own new chapter in the Young Adult Program at his school. I still may but as far as he's concerned, this would simply be in the context of replacing his comforter which I just recently noticed has a tear in it. And/ or his two dressers because a couple of drawer bottoms aren't holding up. (Knowing Hayden he would expect the same room refresh again, this time next year.)
On the heels of our annual Guardianship reporting we also have an upcoming assessment next week for Hayden's DDD eligibility. The DDD (Division of Developmental Disabilities) uses a standard NJ comprehensive assessment tool (that's the literal acronym for it, NJCAT) to help providers & support coordinators understand needed services. It is a couple hours long evaluation (say a little prayer for us next Thursday) to identify the need for support in three main areas: self-care, behavioral, & medical. The results also establish Hayden's tier, which will determine an annual budget for services.
Ahead of this assessment we also have another important upcoming appointment which was rescheduled from late July. If you saw my last blog post you are correct, this is the Fragile X Clinic follow-up that we were supposed to have about a month ago. The day we missed said appointment was one of three very fragile-x days that Hayden had within the span of about a week.
To sprinkle on a little more uniqueness, ahead of our Maine trip I noticed that Hayden would run out of one of his meds while we're away-- unless I had the script refilled early. This has happened to us before, & the doctor called the insurance company to put in a vacation code for the script (or something like that). But he is still a newer patient with the current Clinic. When I called to explain the circumstance-- which by the way sounds so simple but the process was beyond-- ultimately a clinic coordinator told me the nurse practitioner rejected my request to put a refill through because this one med (for ADHD) is a controlled substance. I am well aware of this but (a) I wasn't reinventing the wheel here & more importantly (b) what did they expect me to do. (About a week later, during out rescheduled follow-up, I would learn that this situation was also a result of the Nurse Practitioner not yet "knowing" us, as newer patients of the Clinic.)
As I was literally at the point of changing the start of our vacation over this whole thing, the pharmacy finally told me that I have done everything I need to do & they would take care of it on their end. To which I did not understand so I repeated (through my building anxiety) the issue of the timeline... to which the pharmacy manager said I don't need to take that tone with her (you know, the tone of a special needs mom who is fighting back tears through this high anxiety situation who knows she has done everything she can & should do & is being told there is no more for her to do so it's sounding like her son isn't going to get his medication). But it turns out this was the pharmacy manager's way of communicating that they will fill his script before the insurance authorization expires & then I can pick it up 2 or 3 days later (whatever it was exactly) right before we leave. Which if she had said that in the first place, instead of me having to figure that out on my own, perhaps I wouldn't have sounded like I was taking a tone. Which was never a tone to begin with, but rather me trying to speak without crying because I had just about had it.
For future reference, Hayden's doctor has recommended (especially in terms of the ADHD medication) that lowering his doses leading up to a trip will help stretch out a prescription. I think this would depend on Hayden's behavior trend at a given time, but otherwise duly noted.
To sprinkle on a little more uniqueness, ahead of our Maine trip I noticed that Hayden would run out of one of his meds while we're away-- unless I had the script refilled early. This has happened to us before, & the doctor called the insurance company to put in a vacation code for the script (or something like that). But he is still a newer patient with the current Clinic. When I called to explain the circumstance-- which by the way sounds so simple but the process was beyond-- ultimately a clinic coordinator told me the nurse practitioner rejected my request to put a refill through because this one med (for ADHD) is a controlled substance. I am well aware of this but (a) I wasn't reinventing the wheel here & more importantly (b) what did they expect me to do. (About a week later, during out rescheduled follow-up, I would learn that this situation was also a result of the Nurse Practitioner not yet "knowing" us, as newer patients of the Clinic.)
As I was literally at the point of changing the start of our vacation over this whole thing, the pharmacy finally told me that I have done everything I need to do & they would take care of it on their end. To which I did not understand so I repeated (through my building anxiety) the issue of the timeline... to which the pharmacy manager said I don't need to take that tone with her (you know, the tone of a special needs mom who is fighting back tears through this high anxiety situation who knows she has done everything she can & should do & is being told there is no more for her to do so it's sounding like her son isn't going to get his medication). But it turns out this was the pharmacy manager's way of communicating that they will fill his script before the insurance authorization expires & then I can pick it up 2 or 3 days later (whatever it was exactly) right before we leave. Which if she had said that in the first place, instead of me having to figure that out on my own, perhaps I wouldn't have sounded like I was taking a tone. Which was never a tone to begin with, but rather me trying to speak without crying because I had just about had it.
For future reference, Hayden's doctor has recommended (especially in terms of the ADHD medication) that lowering his doses leading up to a trip will help stretch out a prescription. I think this would depend on Hayden's behavior trend at a given time, but otherwise duly noted.
At this point I hope September is borderline boring. Because the end of July & August (so far) have delivered up plenty of things.
One of my favorite quotes-- unfortunately I do not know who authored it-- is:
"On particularly rough days when I'm sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that's pretty good."
So whatever stage you're at, let's raise our imaginary glasses together in recognition of the next Chapter... however different our books may be.
to be continued...
