Peter — how is your son doing at his job? Has he completed his training? How does he feel about it?
=sheila
Well, things are taking longer than expected. He finished his initial training. Part of that training is reading through an operations manual and then taking a test on it. I suspect he didn’t pass the test, although we have not heard that directly. He is not a good reader, and spent most of his training time on that task. He learns much better via hands on learning or by listening. And he retains a surprising amount of what he hears. (Arguably, better than I do these days!)
A couple of days after the last training day, he did hear from his employer that they want him to re-do at least that portion of his training with a job coach. So then we had to arrange for a job coach and struggle through terminology differences. What the employer means by a job coach and what the agency helping him means by a job coach are two very different things. Clearing that up took a week or so. But we finally go through that. Then it was another week to get the agency to approve the coach, which they did. Currently we’re now waiting for that agency to actually assign a coach and for the coach and the employer to agree on availability so that the coach and the trainer are available at the same time.
In addition to helping with the material he needs to learn, the coach is also able to suggest any further accommodations that he might need. I have confidence that this will all come together eventually, and will boil down to my son’s ability to pass the test and accomplish the basic job tasks by himself, with reasonable accommodations for both. The test is likely the harder part, but I think it’s doable as long as the coach is allowed to read the questions to him. I’m sure he can accomplish the job tasks.
Another wrinkle is that the job itself is changing slightly in the near future, and in a way that will make the job easier for the kid to do. Parts of the change have already begun, but won’t really help him until there is a significant roll out. The project is basically in what I’d call a public test - with only certain guests able to take advantage of the new entry procedures. A bigger benefit will come when those procedures become available to all guests, but the real payoff for him will be when those become required for everyone. That has already happened at a different facility on the other side of the country. Once that is in place here, most of the things he is worried about will be solved.
How does he feel? That’s the harder part. His makeup is such that the time to do anything that needs to be done is NOW! Need to go grocery shopping? Why are we waiting, let’s go. Need a new jacket or shoes? He’s ready to go. And that’s what he wants for this as well. The wait for bureaucracy to move is difficult for him. It’s been almost a month since his last training day. During that time, he keeps asking if he should just ask for a different job at the company, or work on getting a different job altogether. It’s hard to keep him patient. I try to keep reminding him that if they didn’t want him to succeed at this particular job, they would already have suggested a different one, or thanked him for trying and asked him to turn in his uniform and employee ID. So I remain hopeful even while he is impatient - and tests my patience.
Sorry for the somewhat excessive vagueness about his job and employer. I’m pretty sure I’ve dropped enough hints throughout my posts on this subject to figure out the employer, but I’m not going to name names for now.
–Peter
3 Likes
That is an elaborate and demanding situation! I don’t know why I had had the impression that he’d be doing something simple that involved dealing with the public—ticket salesl or some such—at a movie theater. I’m so deeply pleased that his employers are showing confidence in his ability to grow to the job, and are helping him achieve that.
As for your hints re his employer—they all went over my head! Does this have anything to do with a sports stadium? World Series games? I’m completely at a loss! But so delighted at your son’s opportunity to move more out into the world, develop his capabilities, experience his presence.
=sheila
1 Like
That’s pretty close. He’s not selling tickets, he’s taking them at the entrance.
And yes, dealing with a large bureaucracy is never easy or fast. It’s not a complicated job, but since there are probably a couple hundred people doing this particular job (and most every other job at the facility), there is a lot of standardization to every job there. Standards that must be learned and followed. And since the general public is involved, there’s also a fair amount of training for what to do in unusual situations to keep both employees and the public safe.
–Peter
PS - I think most of the hints were in previous posts. Think large entertainment facility in Orange County that attracts visitors from all around the world.
Got it!! 
=sheila
Peter –
My goodness! That young man is sure learning a lot about the real world outside of school. If this beginner position works out, this employer might eventually be able to employ him long term with terrific benefits.
Is the employer aware of how tough his last few years have been? Even large bureaucracies give a little more leeway when someone is grieving. The structure and responsibility of a job will be so helpful for him.
With a significant other on disability, I can relate to the strange world of trying to work with a job coach. In our case, before his surgery, my SO had a desk job requiring a college degree that involved numbers and spreadsheets. His job coach was used to working with fork lift operators, restaurant employees, and construction workers. Not a great fit, but sometimes you just have to follow the bureaucratic process.
It sounds as if the employer is making accommodations and wants this to work out. Crossing my fingers for you both.
HHP
2 Likes
A bit of an update on the week’s activities.
We finally got a job coach assigned early this week. The coach and the agency said they would contact the employer to let them know the coach was ready. Haven’t heard anything from the employer yet. So the kiddo suggested he contact his employer also, which I agreed was a good idea. We did that today. No response back yet, but I remain confident that things will come together.
He and I did have a bit of a run in with each other about that this morning. In putting together an e-mail to his contact at work, I wanted to refer back to an earlier e-mail to make sure we got a bit of information correct. I knew it was from this week, but simply couldn’t find it. I’m sure I went up and down the list of e-mails more than once, and I know exactly what I’m looking for. He kept telling me to look further up and further down, but I had already done that more than once. (I should point out that I despise the online version of Outlook, but that is the best way for him to read e-mails, as he has a screen reader that only works on web pages. That gives him valuable independence, so I have to put up with it.) I eventually blew up at him for continually telling me to do things I’ve already done multiple times. After a brief bit of mutual shouting, I walked away into my home office to cool off. He didn’t cool as quickly and eventually came over to talk to me some more and press his point. It took pretty much everything I had, but I kept my cool even as he started to lose his again. But we both eventually got to the place where we could talk and work and finished up the job. And things are fine now.
This kid and this job are going to kill me one of these days. But not today! And not tomorrow. Hopefully by next week we’ll have a plan and we can both settle down.
–Peter
6 Likes
The seemingly small things that can impose such heavy demands!
Fingers crossed for the right outcome!
=sheila
Let’s resurrect this thread for an update.
DS went to work today! (OK, yesterday since it’s after midnight, but you know what I mean.) And will be training all week, except for Thursday. (There are benefits to having a trainer with sufficient seniority to get a holiday off!)
Then the training will continue next week.
Finally. It’s taken 6 weeks to get this all worked out, which seems like a really long time. But it’s done and things are moving again.
—Peter
3 Likes
Excited and hopeful for both of you. All of these new changes and challenges will keep you both busy and maybe help you create some new traditions. And, if you don’t feel like doing much decorating yet this year, your son will see plenty of holiday decorations.
Sending hugs to you both. Fingers crossed that it will work out.
HHP
Day 2. Closing shift.
Kiddo got a costume at his last training back in Sept. Evening weather is colder now. Needs a costume jacket. Trainer asked him to come early this evening to get a refresher on working with the costume dept. I really wanted him to get that done yesterday because he needs help dressing. I could have been that help and made sure he was wearing it when he arrived this evening. But does common sense and preparedness prevail? Not around me.
So now he’s in the park, job coach in tow, and the trainer is missing. I’m stuck hanging out close by in case no one can help him put on a jacket. Trainer cannot assist with such things. Job coach is there for job tasks, not personal care. If neither of them bend rules slightly, I will probably have to do that myself. Otherwise a skinny, disabled young adult is going to be working outside at night with temperatures falling from the current 60 to the low 50s by the time his shift is ended.
—Peter <== reporting from a restaurant parking lot about a mile from a reasonable meeting place, ready to assist with the massively complex task of donning a jacket
The small things we take for granted that can loom so large. It gives a needed jolt to our perspective.
I look forward to all of these hurdles smoothing out. And I find myself very grateful that your son has this opportunity to.
=sheila
2 Likes
I hope the costume department can make some alterations to the jacket – maybe different fasteners or more of a cape style. Does your son need to be lifted out of the chair to put on the jacket and/or are there tubes and ports that need to be moved and checked? What did he do when he went to school and went outside for recess? Was there a personal care aid to help him or did he have special clothing? I think the employer is really trying to make this work.
I’ve watched my friends struggle on when to intervene and when to back off with helping their kids. It’s another level when disabilities are involved. You’re a good father, Peter.
HHP
4 Likes
Thank you both for your thoughts. I appreciate it.
Turns out that common sense and humanity prevailed last night. DS never texted me that he got a coat, but after waiting around for more than an hour while keeping an eye on his location (we share our location with each other on our phones), I figured that he managed to get a coat on. And that was correct.
We have been in that park enough over the years for me to recognize most costumes. So it was surprising to see him in the wrong costume coat when I picked him up last night. And it wasn’t close to the right size. He looked a bit like the male version of Violet Beuregard (of Charlie and the Chocolate Factory) rolling around in an oversized dark blue coat. I had to smile a bit at that thought.
Anyway, the upshot was that costuming didn’t have the right costume coat available, so they did the best they could with what was in stock. (Yet another reason to get to costuming before the last minute - but apparently no one listens to me.) A proper costume coat in a more appropriate size is on order. Not sure how DS will know that it’s ready to pick up, but that IS what training is for, I suppose. Upon closer inspection when we got home, it turns out the coat was a men’s medium. That might give you some idea of his size. (For those familiar with the small, wiry, hispanic body type, that’s him. His birth father was hispanic.)
For some specifics, no he does not have any ports or tubes or special equipment. The only special item is absorbent underwear, just in case. He can’t get himself out of his chair when nature calls, and I wouldn’t expect anyone at his job site to assist him with that. That is one reason he asked for and was granted shorter work shifts - no more than 5 hours. With travel time and time spent getting to and from the parking area and drop off site, he’s easily away from home for 6+ hours with no restroom break. He’s young and has a strong bladder, but I don’t want to press things.
When he was in school, he had a one-on-one aide whose job included getting him in and out of things like jackets and taking him to the restroom. As to getting a jacket on him, it’s not terribly different from how one might assist a fully-abled adult with their coat. The main modification would be that he doesn’t move around to assist with the process, you have to move around him.
And now he’s already back at work again. I’m certain this is a bit of a stress test, having him work until midnight followed by a shift at 11 am the next morning. His particular position has to be staffed from around 7 am to 1 am every day. If it weren’t for a Thanksgiving interruption driven by his trainer, he would be reporting at 6:45 am tomorrow. So he gets a bit of a break and will have to report at that time on Friday instead. I am pretty sure they want to see how new hires respond to varying shift times. They also need to expose them to both opening and closing procedures as part of their training. So it all makes sense. They can accomplish both goals by running them on a difficult schedule. His second week of training will be a steady 10 - 3 next week. A bit more conducive to learning.
Lastly, I do agree they are doing their best to make this work. The company has an express policy to work with the disabled community, both as customers and employees. They are putting a lot of effort into his training, including running through the whole training cycle a second time. But they also have high standards, and expect everyone to handle the main job requirements. So this isn’t a slam dunk. Frankly, it’s a stretch for him to be able to keep this job. But I think his attitude and his enthusiasm are working in his favor. They like to employ fans of the company - from top to bottom. People who are just doing a job don’t give off the right vibe - and an entertainment company is nothing without that vibe. Their products and services are entirely optional, so all they really have to sell is good feelings. You need to exude those good feelings - and that is exactly DS. If he didn’t have that attitude, I don’t think he would have made it past the recruiters.
–Peter
4 Likes
Yeah! There are so many rules and regulations about personal care activities because no one wants to be sued for doing something wrong or doing something “without the proper training”. A costume department has formal training on how to dress people.
His gift to the world. Fingers crossed that this works out.
HHP
Time to update again.
In spite of efforts to get some informal accommodations for his training, they were not forthcoming. So about a week after my last update, we pulled the plug on his training. We were headed in to another day of training, and my son was extremely anxious. We called his independent job advocate and decided that the best thing to do was to skip the rest of the training. He called in sick, then after we got back home his boss called and I explained the situation to him. He needs some additional accommodations for his job and for the training period, and continuing without them was counter productive. So he would not be there for further training until his accommodations can be formally worked out.
That helped tamp down his anxiety. We all took a deep breath, let a weekend pass, and got to work on where to go from there.
The latest is that we need to get his Dr to sign off on some additional accommodations, which should happen tomorrow. Then we can forward that on to his employer and wait around for them to get processed. I doubt that will happen very quickly. This company, like any large business, is a big bureaucracy. Nothing happens quickly, nor without the proper paperwork. They’re also at a seasonal busy time, so pulling someone off the job to deal with training is not likely. (They probably started his training back in August/September in anticipation of needing people for this busy time.) My guess is it won’t happen before the end of the year.
We also hope to get a different trainer. There is a fair amount of bad blood now between DS and the trainer he’s been using. So requesting a different one seems reasonable.
So it looks like one more shot at training is in the cards.
–Peter
4 Likes
Peter,
You are a very loving and patient father. Even if this opportunity does not work out, you are both learning a lot about what will be possible with your son pursuing other employment opportunities in the future. I’ve had several extended family members with different levels of disability. Each was able to eventually find employment that challenged them and provided them with a social life and a paycheck.
As frustrating as this is, you are helping this large bureaucracy clarify their policies and that will be beneficial to many people (both guests and employees) in the long run.
I don’t know about your belief system (and I hope I am not saying anything inappropriate), but I can picture your wife smiling down lovingly on her two men who are making their way forward together. I am sure she is very proud of you both.
Very sincerely,
HHP
Sounds like it’s a learning situation for everyone. And hoping the outcome will reflect progress!
=sheila
1 Like
My goodness! How time flies!
Lots has happened since the last update. DS got more accommodations. He got a different trainer. He got a different job coach. He even got a new name tag today as part of the company’s celebration of it’s 100th year in business. And he’s at the end of another training cycle.
This one was scheduled much like the previous two - with a “stress test” week with a highly variable schedule, and a second week with a consistent 10-3 schedule. Most importantly, he got an accommodation that allowed his trainer to read the learning material to him. This made a huge difference. He feels like he understands it now. And it got that part of the training done in the first week so the second could be spent on practicing the practical skills needed for the job.
Of course, the reading was not without drama. To understand the drama, you need to know a little more about DS. He does things by the book. If you are supposed to do x, then y, then z, you had better do them. And in that order. So the trainer is supposed to read and/or explain the operations manual to him. But the trainer didn’t do that for every page. He skipped pages. He asked DS to look at a few pages himself. That’s not right. It’s not what the accommodation called for. But I, being the old and allegedly wiser one, tried to tell him that the trainer is going over the important material. The material that will be on the test to be taken later. He’s leaving a bit for you because those bits are unimportant - at least as far as passing the test is concerned. (For those with a bit of teaching background - he is teaching to the test.) But dad, he’s supposed to read everything!!! We have to call my advisor! We need to talk to my boss! This isn’t right!! This is a disaster!!!
I get bombarded with this for two days. He texts his outside job advocate. They tell him what I tell him. (One of these days he’ll learn that his dad isn’t as dumb as he thought. But all young adults go through this phase, so I practice my calming skills and meditation and internal screaming.)
Once we get through that phase - which basically amounts to a long and slow acceptance of the fact that perhaps, just perhaps, those of us helping him just might know what we’re talking about - we move on to the practical stuff. And there are indeed a few issues here that haven’t been fully addressed in his previous training cycles. But again, most of these aren’t core job duties. They’re things that are done once or twice a day - not the things done a few hundred times a day. For example, there are a couple dozen turnstiles at the main entrance. In front of each turnstile is a gate used to open or close that particular turnstile. When that gate needs to be moved, DS would be the one to move it. But he simply can’t. It’s not something that can be done from a wheelchair. Or at least that he can do from his wheelchair. You have to slip a latch in or out of a hole at ground level. And DS is borderline obssessed that he can’t do that. The only solution that he can see is that he needs to find a different job. The actual solution is that this is not a core job duty, so they can accommodate him. Get someone else to open or close that gate. No, he spends literal hours at home complaining that he’s going to lose the job over this, while completely failing to think about and practice taking photos of guests entering the park - something he will need to do many times during a shift.
He is driving me crazy with this kind of stuff. Obsessed with the minutiae while ignoring the important.
But we are now at the end of this training cycle. For better or worse, this will be the last. Tomorrow he has to take two tests. One is a written test of his knowledge. He won’t have to read - his trainer will read the questions to him along with the choices for answers. It’s multiple choice. Then there is a practical test, where a couple of supervisors will watch him work for a while to determine if he is ready to do the job. If he passes both, they’ll put him on the schedule and he will start working regularly. If he doesn’t, I’m going to suggest he not continue with additional training and more accommodations. I don’t think I can take another training cycle, let alone him. It will be time to find a job that is more in line with his capabilities.
With all of this in mind, I did take a long-ish break from work today to pop over to the park and catch him at work doing his job. Made sure to go through his turnstile so he could admit me to the park. Got a couple photos for the family. And since it was lunch time, grabbed a bit of lunch there. They were still celebrating the Lunar New Year, so had a few really good oriental food choices available. After eating, I watched a parade go by, then got a call from my work assistant that the caregiver hadn’t shown up yet.
That was important, since one of their tasks has been to go pick up DS from his work so I can do my work. Called to check, and it turns out the caregiver was in a wreck while on the way to us. I had planned on them picking him up as I didn’t want to wait around until the end of his shift. So now I had to rush home, swap cars to the one that can carry his wheelchair, then get back to get him and bring him home. Had a client waiting for me when I got all of this done. But she was great about it - and I was only about 5 minutes late. Still, I got a good 15 minutes of power walking in to get from the middle of the park to my car, followed immediately by 25 minutes of driving home and 25 minutes of driving back to the park and 25 more minutes of driving home again. So some good exercise followed by exactly zero cool down. Left me a bit achy, but nothing that won’t go away. Oh - the caregiver is fine, just a bit shaken up.
I think that should do it for now. The joys of having a teenager are only eclipsed by the joys of having a young adult getting their first job.
–Peter
5 Likes
I can’t begin to imagine the chronic stress of living with these daily realities. Kudos to both of you for learning to cope as best you can!!! Boy—this job had better work out, given the incredible amount of time that’s gone into the arrangements and preparations. But if it doesn’t, I hope hope hope that what’s been learned from this can be applied elsewhere.
I also find myself wondering…how is your son going to manage when you’re no longer here. It’s not a fun thought. But it’s a reality. I’m sure you’ve given much thought to this. But I doubt there’s an easy solution at hand.
Good luck with the final steps for this job—and let us know the outcome!!
=sheila
2 Likes