Today's Update

 What's growing in the field?

So far... nothing.

Meanwhile...

When I picked Sam up at work the other day, one of Sam's supervisors came out to meet me. She was letting me know that the head of the Food Services Department had just been "let go". This was not great news. 

This now-former head of Food Services was not someone Sam interacted with on anything close to a regular basis, but she was kind - and I think she had a soft spot for Sam. Now, with her gone, who knows?

This supervisor didn't know what it all meant. Would there be changes? Possibly. Probably. It could be anywhere from no changes at all to completely subbing out food services to an independent firm. This, she said, would be up to the School Committee and whomever gets appointed to be the head of the department.

I liked the "no changes" part of the conversation. 

I haven't said anything to anybody about this (other than you) and I've decided to sit on this for a while; to hope for the best and see how this all shakes out. 

If I were a worrier, news like this would really be bothering me.

Another Day

Lately, among other things, I've been dealing with what seems to be more than the normal share of Sam-related issues. These things seem to come in waves and right now, we're approaching high tide. Part of my problem is, I don't know how "normal" some of these "normal" issues are.

This particular tale, at least Part One, begins back in February. 

Last February, Sam (and I) received notification from SSI that he was due for a Medical Revaluation. (I touched on it here.) I won't get into the reasoning behind filling out forms to essentially verify that he's still autistic - mostly because: a) I'm not sure there is a coherent reason for this, and b) I've complained about this line of thinking (or lack thereof) plenty of times before. (And, I guess, c) I'm exhausted.)

Sam and I promptly filled out the all the forms, drove them down to the Post Office and sent them on their way to who-knows-where. Then, we waited (picture a cartoon anvil hanging by a slowly fraying cartoon rope).

Somewhere in between then and now (I think), we (I) received a notice that one of one of Sam's support agencies would no longer be providing support. It seems the State had handed the contract over to a different support agency - one that we could expect be hearing from shortly. 

Having a new support agency was not necessarily bad news. The new agency was replacing an agency which had originally been assigned to Sam's case several years ago. This "old" agency, which we'll call AOFC, was assigned to Sam by the Department of Developmental Services (or DDS, for short. Remember this. It will matter later on).

Anyway, I was less than impressed with AOFC - mostly because I could never figure out what support they actually provided. Sam was assigned a caseworker - a seemingly nice woman I'll call Bella. When Sam's case was first assigned to AOFC, Sam and I met with Bella for an intake meeting. We brought over a copy of Sam's neuropsych evaluation for her to keep, even going over a few of the major points. All went seemingly fine. But after that intake meeting, I never heard from Bella gain. 

Part of this may have been my fault. I was never on the phone to her every month or anything like that. But back when Sam was still in school, I emailed her and called her to ask her about the possibility of her attending an IEP meeting - and I never heard back. 

And after one or two other attempts, I gave up.

In fairness though, when I say I never heard from Bella again, this isn't exactly true. After several years of silence, I heard from her about nine months ago. She called out of the blue, just to "touch base to see how Sam's doing". I was shocked.

Other than that, that was it for interaction with Bella.

So, as I said, going with a new support agency was not necessarily a bad thing. Maybe Sam would be assigned a new caseworker who was a real dynamo. Maybe it would be someone with a wealth of knowledge and experience. Maybe it would be someone who actually communicated, someone eager to help. Someone who would return phone calls.

As promised, the directer of the New Agency got in touch with me and it turns out that she was looking forward to working with us! And not only that, it turns out that Sam's new caseworker would be... Bella!

It seems Bella had left AFOC, probably right after she hung up the phone from talking with me.

I told the directer that I felt Sam's case needed "fresh eyes" and when she asked why, I told her what I just told you - only with a little more detail. Twenty minutes later, we both agreed that, once the New Agency gets settled in, it would be a good idea for someone with "fresh eyes" to take over Sam's case.

Flash forward (but not by much) to a week-or-so ago, when Sam and I received another notification, this one from DDS. Only this time, DDS didn't stand for "Department of Developmental Services". No, this DDS stands for "Disability Determination Services". (At least they both use "Services", just to make it easier.)

The letter was similar to the one received from SSI back in February. I've included a portion of it here for your reading enjoyment (feel free to click  to enlarge... or just move along)...

Enough to relax you and lull you to sleep, unless you're me. 

The previously mentioned cartoon rope holding the previously mentioned cartoon anvil, was now fraying a good bit more.

After digesting as much of this as I could, I got in touch with Sam's other caseworker - this one, his job coach who works at the other, so-far-not mentioned-here support agency, and I asked her ask if she was familiar with this type of letter. It turns out that, no, she wasn't. 

I would like to say I was shocked at hearing this- but so far, this is perfectly in keeping with how these things always seem to go.

Not only was Sam's job-coaching caseworker unfamiliar with my letter, but it seems she also had just received a letter (plus form), hers from SSI. And to top it off, her letter (plus form), though different from mine, was one she was also unfamiliar with. 

On her form, this job-coaching case worker was being asked what Sam's prognosis was (from a job-coaching case worker???). Was he referred by a mental health professional (No, because, a) his disability isn't due to mental illness - read the top of your own form which states what his disabilities are, b) Sam was referred to this agency by DDS (not the first DDS, the second DDS), which you would know if you read the fifteen page form I had to fill out and, C) why are you even asking these questions - especially from a job coach! Read the damn fifteen page form I had to fill out! Read the medical records we had to release!)

Since the job-coaching caseworker was just as baffled as I was, I decided to get in touch with the New Agency to see if they could weave some magic shed some light on any of this. I emailed the director and waited anxiously for a response.

The following day, the director got back to be. She said she got my email - and was handing it off to Bella!  

Are you kidding me? 

For maybe once in my life, I displayed uncharacteristically good judgement and waited until the following morning before emailing a response. I replied with a straight-to-the-point, "To be honest, I'm a little stunned" - which I felt showed considerable restraint considering the fact that I was on the verge of completely flipping out.

The director called me that afternoon. Yes, she had remembered all that we discussed, but she was thinking... what, I'm not sure. 

Suffice it to say that for now, at least, she'll handle Sam's case.

As to the question of the medical reevaluation and how "normal" or "not normal" all of this is, she couldn't say. She had me email her the forms and the letters and said she would try to find out.

Along with the forms, I also emailed her a copy of Sam's last neuropshycological evaluation because, not only is this the foundation for understanding Sam's disabilities, it turned out the only thing in Sam's file, the file which came over from AOFC, the file which Bella was in charge of, the only thing in there was Sam's original intake form. Nothing else.

And as of today, that's where we stand. 

We wait. And we wait. 

And the rope continues to fray.

Food Flight

For the first twenty-five years or so of living in this house, I had a couple of bird feeders hanging from the tree out front. I was forced to take them down a couple of years ago because, along with the birds, they were attracting rodents. I love the birds but I'm not a big fan of rodents - especially when they decide my house is not only a good place for food, but for lodging, as well.

I took down the feeders and, for what seemed like weeks, birds would still come fluttering up to where the feeders once were and they would hover in place, obviously wondering what the heck was going on. I kind of felt bad about it but if it was between encouraging birds and discouraging rodents, discouraging rodents is the clear winner.

Anyway, across the street from the end of my road, there's a doughnut shop - one of those with a drive-thru window - a convenience for those consumers too lazy to get out of their cars to walk into the building to get their daily, deep-fried doughnut along with a cup-of-whatever is required to wash it down. 

On any given day, at any given hour, it's not unusual to see cars snaking around the entire building, around the perimeter of the parking lot, out into the street, all waiting in line at the drive-thru.

A while back, for reasons so-far unknown, the parking lot was taped off with some of that crime scene/caution tape - and it now looks like the businesses is (presumably) temporarily closed. At first I thought, maybe they were going to be paving the lot or at least re-painting the drive-thru lines - but it's been several days and so far, nothing. 

Then I thought that maybe a crime was committed. Maybe someone cut in line, thus depriving another customer of their God-given, constitutionally protected* right to be first in line to get a doughnut. But I haven't seen any police cars over there, let alone any chalk outlines on the pavement of some guy who may or may not be holding a doughnut.

I should also note, there are no outward signs of a possible, though completely understandable, grease fire. 

So basically, like usual, I have no idea what's going on. 

Anyway, over the time it's been closed, I keep seeing the occasional car pull up and stop at the tape. The bewildered driver (and, if applicable, passengers) sit there, trying to figure out what this is all about; clearly wondering what is happening to their lives.

Eventually, reluctantly, they seem to accept the reality of their newfound doughnut-less existence and they slowly pull away, back into the traffic of life - their day, obviously ruined (or so I like to think). 

And I think back to those birds (and also, the rodents). And I wonder how long it will be before these doughnut-less consumers, too, will give up.

So far, they have the birds beat - and they're neck-and-neck with the rodents.

(*section 8, under "General Welfare".)

Long Walks

On our walk to the opening of the Farmer's Market a couple of weeks ago, Sam came upon a newborn baby bird laying dead on the sidewalk in town. Whether this bird fell out of it's nest or was pushed was open to a brief, irrelevant debate. I found a stick and  managed to scrape a small hole in a nearby patch of dirt, placed a rock over it and we continued on our way. 

Sam thanked me, which for some reason, caught me by surprise.

The subject of this baby bird came up once or twice thought the day - not so much as in conversation but more just a stray comment followed by comforting. 

Later that day, on our evening walk, we came upon another one. This one, like the other, all pick skin, all beak and feet. As with the one in the morning, I again found a stick and managed to dig a small hole and bury in a shallow grave, topped with a small stone.

We continued on our walk - with a little trepidation, hoping that would be the end of it.

Sam and I look forward to our evening walks but this experience, twice in one day, gave us pause - at least for a little while. We were hoping this would be the end of it. 

We pushed through and so far at least, no more dead baby birds lay in our paths. 

From time to time though, the subject of these poor little things has come up - but briefly and less and less so with the distance of time. 

Sometimes, maybe all the time, that's all you can do. Just keep pushing forward- push forward and hopefully get some distance. But still think of those baby birds from time to time, and know it's ok.

Today's Q&A

 Q: What Would Jesus Do?

A: Apparently, rent a storefront on Main Street and hand out free cardboard.

How I Spent (part of) My Saturday

I went in for an MRI yesterday. (Nothing serious. I think my doctor just needed to make a boat payment). The MRI itself was no big deal. The worst thing about the entire experience was that beforehand, I had to put on one of those open-in-the-back hospital gowns. 

First of all, those gowns are impossible to tie. There's one pair of ties at the back of the neck. That I know for sure. But there's one, possibly two more pairs of ties somewhere lower down. Getting a hold of one of the lower ties isn't a problem. The problem is trying to tie it to it's partner. 

I'm blindly reaching down behind me, trying to grab anything that's loose. Have I grabbed the right tie? Why does it feel like the other tie is on the same side of the gown as the first tie? I'm turning around in circles trying to get these things to meet up. There's a big mirror there, but that's no help. There's no way to see behind me. It's like trying to tie your shoes behind your back. I don't think I ever got it tied right.

To make the experience even worse, after you manage to sort-of get the gown tied (at the top only, with any confidence), they march you down not one, but two hallways - all the while, clutching the back of the gown in a vain attempt to hold the gown closed. The only thing more humiliating would have been if they made me carry a balloon.

But the worst thing about those gowns is that you have to get dressed (and undressed) in a tiny little booth-sized room, with nothing in there but a small wooden locker, a rock-hard wood bench and worst of all, a full length mirror. I don't like looking at myself under the best of conditions (which implies there ever are any 'best of conditions') and I certainly don't like to look at myself stuffed into a hospital gown, looking like I'm about to get wheeled down to the maternity ward. 

I was thankful it was Saturday which meant that there was hardly anyone else there. And the people that were there were nice. At least they didn't laugh at me - not until I left, anyway.