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About a month ago our neighbor invited us to his cookout. He’s 35, his friends are all in their early 30’s and they are coworkers. His father and step mother attended, it was a nice cookout. They are all drinkers, so after about an hour or so they were feeling pretty good.

One of the young men sat across the table from me, beside my husband and told me he remembered seeing me sitting in the grass hand weeding along the fence. Women his age, in his experience, wanted to be pampered, taken care of, didn’t help out with yard work, things around the house. He said women his age would never think about mowing the grass or pulling weeds. He’d seen me tending my gardens and such, and knowing I had health issues he really admired me.

As the afternoon went on he kept telling me I had to be a hottie in my day. I was so embarrassed. No one but my husband had ever expressed something like that. I’d always been overlooked as a teenager, had a lot of crushes on boys my age, but never had a date, a boyfriend, until my husband, and I was 19.

AT one point he turned to my husband and said, “I hope you know what you have and appreciate it.” He said he did know and did appreciate it. Then this young man said, “Okay, I’m just going to come right out and admit it to you, I have a crush on your wife.”

He just went on and on about how he’s looking for a woman like me, someone that believes in being a partner, sharing responsibilities. I cried. He said, “aww, you don’t have to cry.” He was so sweet. I explained that I don’t have a positive view of myself, with my disability, not being able to contribute much, that it meant a lot to hear someone acknowledge what I do.

Our neighbor came up behind my chair and kissed me on the top of my head. When we were leaving the cookout that young man hugged me.

The whole experience made me feel so good about myself. I have a hard time seeing myself as having value. I often feel unappreciated, taken for granted. That kind sentiment did more for me than he would know.

Dr. Do Little


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If you’ve been following my blog for any time then you likely know I have a variety of medical diagnoses and disabling conditions. I have a number of diagnoses in the lumbar area of my back as well as depression, PTSD and an anxiety disorder. The last few years I’ve been struggling with pain in my shoulders, the swelling of my left arm and deteriorating range of motion in my left arm.

Two years ago, an Orthopedic doctor put injections in my right arm that eliminated the pain completely. I’d had a lot of pain in my collar bone. About a week after the injection the pain was gone. After favoring the right arm for so long, directed by my Personal Care Physician (PCP) to let it hang at my side and use it as little as possible, my left shoulder began to hurt. The pain ran down the outside of the back of my upper arm, spread over time to the front of my bicep, the shoulder itself and recently down into my arm pit and down my forearm. I talked to my PCP more than once about the noticeable swelling of my left arm, the discoloration of it, as well, that I couldn’t get it into the sleeve of my good winter coat. I was injected in my left shoulder more than once, without any relief.

Instead of referring me to an orthopedic doctor she sent me to a Physician’s Assistant in her office who studied orthopedics. He had a student inject me, with the same results as the other injections to my left shoulder.

I saw an Orthopedic doctor when I broke my foot and asked if he could see me for my shoulder. He x-rayed it and consulted that he thought I might have a partial tear of my bicep tendon. He injected it and instructed me if it didn’t feel better to let him know. The injection didn’t help any more than the other ones that had been administered to my left shoulder.

Honestly, I chalked it up to more pain I’d have to endure, as my pain medications did very little.

At my last six month visit I talked to my PCP again about my left arm. I told her I’d heard something snap when picking up my rollator and my range of motion was more and more limited. She ordered an MRI and referred me to the same orthopedic doctor that treated my broken foot. They scheduled my appointment with the orthopedic doctor first, then the MRI. He said he thought I had a partial tear of my rotator cuff or bicep tendon, he acknowledged the limited range of motion and the swelling, telling me if the MRI didn’t reveal a cause for the swelling, he’d order an ultrasound because after checking my pulse on both sides of my wrist he was concerned that there may be a blood vessel pinched or a clot restricting blood flow. He said if it was a partial tear I’d see him again, if it were a full tear he’d send me to an orthopedic surgeon.

After the MRI my PCP sent me a message telling me “the MRI doesn’t look too bad.” The ortho’s office called to say the doctor saw a more significant tear than the report indicated. He also saw bone spurs and arthritis, changes to my labrum and the humorous bone was riding above where it should be in the joint. He was referring me to a surgeon for opinion of best treatment.

My PCP did the same thing when I had an MRI on my back. She sent me a message saying the “MRI is unremarkable.” I asked what that meant, I was told there were no changes. When the orthopedic doctor looked at the MRI he said there were a number of serious changes, such as the vertebrae facets were ground off from all the walking I’d been doing and there were so many bone spurs, they had effectively self-fused three of my vertebrae. He’d recommended reducing the amount of walking I was doing.

I don’t understand her need to minimize, down play, what’s happening with my body. I can’t get adequate treatment or pain control if she doesn’t acknowledge the reality of my diagnoses. People tell me to change doctors, but it’s not that easy. Most of the doctors in the area aren’t taking new patients and it’s horrible starting over with someone different, as they often think one is just doctor shopping to get medications.

There have been two times in the recent past when she’s asked me when I last saw my cardiac doctor, and when I saw pain management. No one ever referred me to a cardiac doctor or even suggested seeing one, nor did she suggest pain management should be an ongoing thing, as she sent me there for my lumbar issues and when the insurance denied treatment they didn’t schedule me to see anyone again.

The last time I saw my PCP she was clearly stressed and distracted. She didn’t want to hear about my issues, I got “yeah, yeah, I can’t diagnose something like this in a 15 minute appointment.” She also chastised me that I shouldn’t have waited for my appointment to tell her about the pain in my left knee and left shoulder because the longer it goes untreated it can become permanent. I had told her for a couple years about both, (the knee diagnosed by her as arthritis, diagnosed by orthopedic doctor as sciatic related) that it had become more intense recently to my thinking was due to ignoring them for so long and treating them with the same ineffective pain medications for so long.

I know others with disabling conditions who struggle to get adequate care, have to fight for treatment, to be believed, as doctors dismiss a lot of serious complaints or act as if everyone suffers from these chronic conditions, chronic pain.

I can’t accept that this pain and these limitations are going to be part of the rest of my life. What kind of life will that be, suffering like this?

My White Flag is Tattered and Torn


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The agency facilitating my son’s waiver services contacted us in late June to let us know they had a woman who was interested in working with my son. She had already started the process to get her covid 19 vaccinations, had her flu shot and was waiting for her criminal clearances to come back. We had a meet and greet, and she seemed to be right on top of everything, having parts of his Individual Service Plan (ISP) committed to memory. He was happy with her and she started on June 21.

She arrived with no money, so she couldn’t afford to take the bus. I paid for her bus fare. The next day she arrived without money, and told me she wouldn’t get paid from her other job until Thursday night, so I gave her bus fare for the next two days. She complained that the residential position she held paid for outings with clients via petty cash and they always used staff vehicles. She didn’t understand why she should have to pay out of pocket for activities he wanted to do, when she took the job because she needed more money, didn’t have money to spend on eating out.

The next week she had her agency badge. They went shopping and did so the rest of the week at various stores, looking for personal items, bedding, etc.

She gave me some receipts from their outing and I realized my son had paid for a number of items for her at the Dollar store. I emailed her supervisor, but didn’t hear back from her. I mentioned to the DSP that my son was not to be buying things for her. After closer review, he’d also bought her a drink at the restaurant where he had lunch.

I tried to think of some activities they could do, as she’d already begun to complain about the repetitive shopping and lunches, though that’s how he learns and retains his skills.

It came to my attention that he was buying her a drink every time they had lunch. She was arriving later and later in the morning and complaining about him not wanting to stay out for the full five hours allotted because of the heat. They were riding the bus around and around just to allow her to get five hours of pay each day. She was complaining to him daily about being bored.

She arrived one day and asked if they could stay home, do something here, as she’d left the house late and forgotten her badge. I told her no, he had bought a tie-dye kit and needed to get some t-shirts. I paid her bus fair again.

After that outing, my son confided in me that he was having a hard time getting to know her, as she wasn’t talking to him, not on the bus or at lunch. He went on to tell me that she was on her phone a lot, on the bus he’d heard her telling someone his name, talking about where they were and what they were doing. He said she stands outside stores and talks on her phone while he’s shopping alone. I asked him how many times that had happened and he said maybe four. I asked him if he was paying the cashiers alone, without help managing his money and he said yes, sometimes.

I decided to contact someone to discuss this. Unfortunately her supervisor and the supervisor’s supervisor were quitting that Friday, so I knew it would do no good to talk to either of them. I called his Support Coordinator to see if she could direct me as to whom I should call. She took the info and talked to her supervisor, they contacted someone at the agency. The agency called me to tell me the DSP was on suspension pending investigation. My son and I were interviewed by the investigator.

The next day the DSP showed up here late in the afternoon and wanted to know what was going on, she couldn’t imagine all of this was over bus money or a few drinks, which she went on to say the supervisor had told her my son could buy for her. She paid me back the bus fare. I explained to her what it was about and she admitted that even when they were at lunch she was getting up and leaving the table because she didn’t want to watch him eat and was uncomfortable.

His services required his DSP to be within arms reach of him at all times. He has to have help when paying for items and his DSP is supposed to model appropriate social interaction with cashiers, waitresses, etc.

So, here we are again, waiting to meet another new DSP to start the whole process over again. We have a meet and greet scheduled for this Wednesday, and will be meeting the interim supervisor as well.

I’m almost ready to go back to our previous agency and resume as his Managing Employer, put an ad in the paper and do this again on my own. Using agency model is supposed to eliminate the stress on the family, they are supposed to supervisor, direct, and manage services. I’m not supposed to have to manage their staff, constantly reiterate the rules and agency policies, or supervise in any way. This agency made it incredibly difficult to even maintain contact with supervisors.

And so… it begins again.

How Can You Stay With Her?


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Several times over the years my husband has come to me saying a co-worker asked him how he stays with me, after I became disabled and subsequently gained so much weight. I can’t understand why he thinks he must tell me about this every time.

I’m terribly insecure about being disabled, obese, being mobility limited. He knows this. I stress a lot about not wanting to be a burden, to contribute and do what I can to feel productive, then he feels the need to keep telling me his co-workers can’t understand why he stays with me.

When I explain to him how that makes me feel he says it’s not about you, they are complimenting my character. WHAT?

I ask him what he’s telling them, he is vague in answering, but their comments make me wonder how bad he’s portraying his situation.

I asked him, do you tell them how I hurt myself trying to take care of things so your home is nice, and you don’t have to when you get home from work? Do they know I force myself to adapt and do all the housework? Do they know that, even while using a wheelchair, I serve(d) you dinner in your recliner with your feet up every day? Do they know you sit on your behind and watch me struggle to complete housework chores while crying from the pain? Do they know I have to ask you three or four times to help with taking out garbage or recycling and often still end up doing it myself? Do they know I have to do everything to take care of our pets… feed, water, clean litter box, clip toenails, groom, walk the dog all but on the weekends? Do they know I shovel the sidewalk and the parking area so you don’t have to come home and do it, at great personal risk and severe pain that lasts for days afterward?

I’m sure they have no idea how hard I work to mitigate my disability, my limitations.

Why is it representative of his character that he stays with me through all of this, when husbands and wives take vows to support one another through sickness and in health? Isn’t this what spouses do? If you love someone, you stay with them, help them, support them, take up the slack when they need to take it easy?

It almost feels like he needs to remind me that at any time he could be gone, that others would leave, that he’s doing some charitable act by staying with me.

Please tell me how you’d feel were this your situation.

Don’t Fence Me In


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The ongoing saga of our backyard fence has finally, I hope, come to an end.

I’ve been trying to convince my husband for months that since our neighbor moved her fence right up against our fence and I can no longer get my hand between the fences to pull weeds we should move our fence in about a foot to make room for the weed whacker. He’s been resistant to the idea, until I took a nasty fall in my backyard hanging up clothes. I can no longer get down on the ground and get back up without a lot of help. Crawling around on the ground hand weeding is no longer an option.

My husband finally conceded and agreed we could move the fence. I let my difficult neighbor on the back property line know that we would be moving our fence in about a foot. That way we could weed without me hurting myself. She immediately said moving it a foot wouldn’t be enough, it wouldn’t be wide enough for my husband to be able to get between the fences to weed.

I then told her we might move it 18 inches, so that it’s on more even ground. I also explained, so she wouldn’t be upset if she saw it happening, that we were thinking about pinning landscaping fabric between the fences. She objected to that, saying it doesn’t prevent weeds, tatters and becomes an eyesore. I told her we weren’t sure what we were doing yet. She then suggested just taking our fence out altogether and joining onto hers. Absolutely not! Not with how upset she gets about the fence line, her grass, etc. She did tell me that she considers her fence to be on the property line now.

A week ago we finally went out and started the process of moving the fence. I went along and wiggled the posts from side to side, my husband pulled them out and we moved the fence to the outside of the posts, because our neighbor had complained that we had the fence on the inside of the posts and she thought that was illegal. Telling her we had the fence inspected by the codes dept for our city AFTER installing it and it passed never changed her mind about this particular complaint she had.

It only took us a few hours and we had the whole section of fence moved in. We didn’t get it perfectly straight, but we did do a pretty good job. We tightened it, pulling slack out of it. We were able to remove the landscaping blocks we had used to fill gaps at the bottom of the fence. It looks so much nicer.

Hopefully, the drama with the back neighbor over the property line and fences has come to an end.

Silence Can Be Deafening


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Sometimes silence speaks louder than words.

I’ve been experiencing this with my son’s former Service Support Professional’s (SSP) father, our friend of 37 years. After she quit without any notice, only letting me know via a copied email to the agency, he didn’t speak to us at all. He stopped interacting on Facebook, which we used quite a bit to keep in touch.

Of course we knew, it was his daughter, a father is going to defend his kids, right?, but he hadn’t had a good relationship with her for some time, knew how she could be very selfish, demanding, disrespectful. We seriously thought he might reach out and apologize for her behavior, we thought he was likely embarrassed by what she’d done. He didn’t reach out, I did once, and he tagged me on two Facebook posts, but otherwise, continued to snub us, not interact at all. The silence was deafening, considering how we’d always been very open, communicated often, talked about anything and everything.

I decided to reach out one last time, to see if he had anything to say, before closing the door. He answered me, but told me he was irritated by my Facebook post about the position, that people knew she was our aide, though I never told anyone, never referred to her on Facebook as my son’s aide. I asked him if he agreed with what his younger daughter had posted on my page, that I had “trashed” his daughter. He didn’t answer.

He told me he thought she’d have behaved better, would have shown more respect. He said he probably shouldn’t have recommended her for the position in the first place, since we were friends. I had warned him about not wanting to do that, seeing as how all my other friendships had dissolved after hiring friends for the position.

The fact that he said he had friends who knew she was working for us didn’t register until after we’d ended the chat. She was instructed to not tell anyone, ANYONE (he knew because he referred her) that she was working with my son, or anything about the position or my son. She and possibly he had violated my son’s privacy and the agency’s policy to protect his privacy.

After we’d had this chat, the last one we’ve had since, I ran into one of my husband’s former co-workers at the grocery store. She asked me how things were going for my son because she knew we were looking for someone. As we were talking about the whole situation she’d commented that “if it was the person I think it was she’s not cut out for that kind of work. I have always loved her Dad, but she’s got issues.” I didn’t mention a name, but did tell her that I’ve heard similar things from other people who’ve worked with or known her.

What really upset me about my conversation with her Dad was that he knows how she is, knows all these things about her that I had to find out through interaction with her, listening to her brag about having been suspended from school many times, hitting a police officer, being arrested, stabbing an ex-boyfriend, etc. Not exactly someone I’d have chosen to work with my son, had I known who she was. He did, but never shared any of that information with us so we could make an educated decision about whether or not to hire her.

I suspect we probably won’t talk again. He only wanted to talk when he needed us, once he found someone else to spend time with, we hardly saw or heard from him.

Still Waving My White Flag


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After the loss of the first DSP from this agency, we were sent another woman who seemed very nice, all business, who had experience. She went out with my son twice, then told us she would be starting the volunteer application process.

The next day she was scheduled to work, she sent me an email letting me know she was quitting the position with my son because her other job offered her more hours and she was taking them.

In a few weeks, the agency sent out another DSP for us to meet. This one was a young woman of color. She was sweet, seemed to get along with my son right from the start. They went out together over the course of about two weeks and got along well. She didn’t have her badge, so she was paying for the bus out of her own pocket, but she got her picture to her manager and the manager brought the badge here and left it with my son.

The new DSP relied on her mother to bring her and pick her up from work, but it hadn’t interfere with services, so we were fine with that, however she could get here, as long as she wasn’t extremely late, worked for us.

The first day with her new badge they got on the bus and the driver gave her a hard time, asking her why she was showing him the badge, what was that supposed to do. She explained as she previously had, that she was his staff and knew she could ride the bus with the pass for free when she was with my son. The driver then exclaimed that “you have to have a person with disabilities with you to use that. I know he’s not disabled, I’ve seen him riding the bus many times by himself.” This is a lie. He’s not tried riding by himself for about a decade.

The driver pulled the bus over and called the Trade and Transit Center (bus depot) to talk to a supervisor. My son was humiliated, made a spectacle of. The whole episode wreaked of a problem with race, as my son is black and his new DSP is black. They both have passes that allow them to ride for free, he appeared to be making an issue of two black people trying to ride for free, as if they were scamming to get a free ride.

Of course I called the depot and complained, as did the agency supervisor. My son didn’t want to ride the next day, afraid the driver would pull something similar. After much coaxing he did go out and had to ride that driver’s bus home, but the driver didn’t even look at either of them.

When this DSP completed the volunteer application and scheduled her orientation everything came to a halt. She was told the hospital now required full Covid vaccinations as well as flu vaccination to volunteer. She asked for a religious exemption as she’s not vaccinated and will not get the shot. She doesn’t have the flu vaccine either.

The volunteer coordinator explained she’d be glad to help her complete the exemption form, but there is no religious exemption for the flu shot and if she doesn’t get it then she can’t volunteer during flu season, roughly October through April. She apologized to us and suggested she would like to do the community day with my son, if/when they can find someone to do the volunteer days. He’s not open to that, as he doesn’t want more than one person to have to worry about calling off. She will stay with him until another person can be found, but this was heartbreaking.

The supervisor has since asked me what his volunteer days are, as she’s already been told numerous times this felt more like her asking to change them, and if they’ve always been the same, saying if it were Monday, Tuesday and Wednesday she had the “perfect person” for him (all 3 she’s sent to him have been, in her view, the “perfect person” for him). The person she had in mind is only available those days, not available on Thursdays and Fridays.

My son’s quarterly monitoring was due this week, but I realized the location where his Support Coordinator was going to meet him is not near any kind of activity they could do while they waited an hour for the meeting. I left a voice mail for the supervisor and a text for the DSP asking if we could push her start time back an hour, so they could go straight to the lunch meeting, then go to the bowling lanes after. Neither of them got back to me. At 20 minutes to end of day, the day before the meeting, the supervisor got back to me telling me she hadn’t had 5 minutes to pee the last day, her policy is she will answer within 24-48 hours. I told her I’d already talked to the Support Coordinator who needed to know and asked her to just come here, so there was no need to send the DSP out that day and my son was upset about how it had been handled, so he didn’t want her to come Thursday either.

When we spoke to the Support Coordinator she was appalled that it took so long to get back to us, that she seemed to be asking if volunteering days could be changed, that she would send someone to work with my son at a location where she knew vaccination was a requirement but not find out if the person was vaccinated.

My son has trouble getting used to new people, trusting new people and has always had issues with abandonment, so the idea we’ve gone through 3 DSPs with this agency since Christmas, all of which were unreliable or unable to meet the requirements of the position is unacceptable.

There won’t be any more of this nonsense where the DSPs get to “sample” going out with my son to see if they think they are a good fit for him. He doesn’t need to try to get to know someone not knowing if they are staying or not. If they are assigned to him, then they need to meet the requirements of the position and the volunteer portion of the position as well.

My white flag is becoming tattered and torn.

I Waved My White Flag, Chapter Three


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We are officially without a DSP (Direct Service Professional/SSP – Support Service Professional) once again. My son only got 4 days of services from the new DSP before she began causing a lot of problems at his volunteer location, with her agency supervisor, etc.

As the delayed start day at the volunteer location approached my son was getting excited to get back to his routine. On the morning they were to go back, the agency manager called me to say the DSP had called off. She’d suggested her granddaughter was sick. I told her I’d call my son off at the hospital, as I always did, she asked me to verify that the DSP had called off.

When I talked to the volunteer coordinator she told me the DSP had called and left a message the night before. I asked if there would be someone available to do the orientation that Thursday, she was going to check on that. After we hung up, about a half hour had passed when the volunteer coordinator called me back saying she just wanted me to know what had been going on.

Apparently when the DSP spoke to the volunteer coordinator, after me, she was told I’d called off my son and asked if she’d called off. The DSP lost it, she had a fit that I had asked about her, saying I had no business calling the hospital, didn’t need to know anything about what she was doing.

The coordinator confided in me that she’d told the DSP that I had been encouraged to call anytime I wanted to, to check in and that the DSP appeared to have a serious problem taking direction, being told anything. She’d been sending incorrect information to them regarding her criminal clearances, arguing with them. She said she could tell that the DSP wasn’t going to be a good fit for the volunteer program and she hoped we’d find someone else.

I then heard from the agency manager who confided in me that the DSP had been giving her a hard time, had gone to her supervisor making complaints about her, about other employees, another client. I told her this was not going to work. Besides her unprofessional behavior with the hospital, she’d not let my son pick out his own personal items, Christmas gifts, etc. She’d been treating him like a child. She agreed that something was going on with this DSP and she wasn’t a good fit, though we’d all had such high hopes that she would be.

I told her we had to make a change. She asked me to email her a detailed letter about why we wanted to end services with her. She was afraid if she took her off the case, the DSP would suggest it was retaliatory for her going to her manager’s supervisor. I did so.

So, we are still waiting for a new DSP and will have to get the new person through the volunteer application process at the volunteer site.

I Waved My White Flag, Chapter Two


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We started services, under “agency model” with the new agency we were referred to by our son’s Support Coordinator. Until the new “Direct Service Professional” (DSP rather than SSP) is able to get through the volunteer process at our local health system, we opted to have them go out for a couple community days each week, bowling, shopping for personal items/Christmas gifts and to have lunch.

Everything seemed to be going well. My son told her she was a “keeper.” As with years past, he took 2 weeks off for Christmas, while his Dad is home. We would have been returning to volunteering Jan. 4, provided the volunteer process moved along without a hitch.

This week I heard from the DSP. Apparently there was another orientation required in the department where my son volunteers, in addition to the overall orientation for the hospital. It couldn’t be done on Jan. 4 when they came in because there wouldn’t be someone available to conduct the orientation, so they decided to postpone them starting until Jan. 11. I was leaving for a doctor appointment when I got this text.

When we initially met with the manager from the new agency, she reassured me that she would be taking over all the coordination between agency and health system, managing the DSP, etc. All I had to do was sign the time sheets verifying that she’d worked. I provided the manager with contact information for the adult volunteer coordinator.

The DSP texted me on Tuesday telling me “My schedule is completely booked with family next week and can’t do it next week… so hopefully we can start without it.” She then texted me later that night saying “Everything is good to go on January 4th… I can do my orientation that day when he goes back.” I asked how that would work, if my son would attend with her. She said she didn’t know, they didn’t say.

She went on, the next day, to share an email from the coordinator of adult volunteer services that indicated “Environmental Services cannot accommodate a department orientation on Jan 4th and requested that he start back the following week on Tuesday, Jan. 11th.”

The DSP said if you have any questions you can call volunteer services, … as if I need to be told that.

Later that day the DSP indicated she wanted to start using her car to drive my son on his community outing days because she thinks waiting for the bus is a “waste of time and it can be cold sitting or standing out in the cold.”

I got a call from the coordinator of volunteer services who said she was getting emails from the DSP that made her think there was some confusion so she wanted to make sure I knew what was happening. The coordinator explained that there would not be staff from the department available on the 4th to conduct the orientation, but there would be on the 11th. The orientation was about 15 minutes long to show them where to keep their things while working and where to get supplies they would need while working. She also said the DSP couldn’t start until she provided her State Police Clearances, that she’d indicated she had them, but had not provided them to the hospital yet. I explained to the coordinator, again, that I was not managing the DSP, that her agency manager was.

I shared this info with the DSP and her manager. I also asked again that the manager coordinate with the hospital, as she’d promised to do. As for the question about driving my son, I would think about it. I told them if they wanted to discuss anything I’d be out, at back to back dental appointments until 4:30.

Sometime between 2:30 and 3:00 I was in the waiting room at the dentist’s office when my phone rang. It was the agency manager. She said she was glancing at texts while driving and wanted to know what was going on. I recounted for her what the volunteer coordinator had said and that I’d hoped she was going to reach out to volunteer services to introduce herself, as she’d indicated.

When I got home there was a text from the DSP. She’d emailed the volunteer coordinator: “Did you speak with SM mom: She sends me this text with a indication of it’s me that we can’t start? Even though I screen shot your email to her. I told her if she had any questions to call you.”

To say I was appalled and embarrassed would be an understatement. Rather than asking me for clarification, she contacted a (third party) professional with her interpretation of my words, something that should never happen. I’d not said anything remotely close to assigning blame for the change. The volunteer coordinator had clearly explained how things had played out, I’d told her that she’d clarified things well.

The only person who’d suggested any responsibility for the delay was with the DSP was the DSP herself when she’d texted me to say “My schedule is completely booked with family next week and can’t do it next week… ”

I had told both the DSP and her manager that I didn’t want to know anything about their family issues, as it’s not my concern, especially now that I’m no longer the managing employer.

As for the issue of driving my son, I contacted his support coordinator to confirm that I understood the process regarding my son’s ISP correctly. My understanding is that his outcomes clearly include riding public transportation, an ISP meeting would have to be called to change his outcomes before that could happen. She told me that my son would have to request the change, what the DSP wanted was irrelevant. She could have her opinion, but that’s all it is. The ISP reflects what my son wants and needs. The agency manager said that the DSP was offered the position knowing riding the bus was a requirement, she can’t come along now and have a problem with it.

We thought we’d found the answer, this new agency, agency model, that they would handle all the coordination, managing the DSP, etc. The DSP had experience, seemed to be ready to work with us, seemed agreeable to the arrangements, but now we feel like we’re experiencing deja vu. Only a couple weeks into services and here we are again, more stress, anxiety, confusion, and this time I’m faced with knowing the DSP is not above throwing the parent under the bus with another professional organization rather than discussing things with the parent. Just what I need… (sarcasm).

At my doctor appointment, she suggested that the light headedness, nausea, diarrhea and headaches I’ve been experiencing are stress related. She said my elevated blood pressure, and sugar could also be stress induced. She suggested trying to remove some of the things causing stress, especially seeing as how my heart attack 2 years ago today was stress related.

I’m feeling totally done. I had such high hopes for this situation. I just want to have someone work with my son that I can trust, who will be thinking of him, not themselves when out with him. It’s disappointing that this DSP is already complaining that he needs to be open to going different places, doing different things, when we know he learns through repetition and his social anxiety makes him uncomfortable with new places and people. Once volunteering begins again, he’ll only have one community day to plan for, so if he wants to go to the same place, do the same things, that’s his prerogative, as he is practicing skills to maintain them.

I Waved My White Flag


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I gave up. I gave in. I surrendered to the reality of the situation.

For a number of years now, I’ve acted as the “Managing Employer” for my son’s services, as a person with developmental disabilities. I was responsible for finding staff, referring them to the agency that handled the administration of his waiver funding. I was to set the schedule based on the budget he was authorized to use. I participated in the establishment of his Individualized Service Plan (ISP), the setting of goals/outcomes that his services are based on. I had to keep track of the “units” he had used and still had available annually. I was to “train” his staff, educate them on his diagnosis and make sure they read his ISP so they understood what works and doesn’t work when interacting with my son. There were agency dos and don’ts that the hiring coordinator spoke to the staff about at the time of their hiring that I was tasked with reiterating as needed and if they weren’t being followed I was to report this to the agency. I was tasked with reporting absences, and reasons given for them. If discipline was required, I was to report that so the agency could send out written warnings. I had the responsibility of setting the rate of pay and determining if someone earned a raise and how much of a raise they would get. I had the authority to change scheduled hours, send staff home.

The agency had encouraged us to utilize family and friends, as they would know my son, our family, and easily understand my son’s needs. We don’t have family to ask, but I did have some friends who were in need of work, who knew us, whom my son was comfortable with, at least one of which had a son with special needs herself. Of the seven friends who took the position over the years, only two of them remained our friends after having the job. Everyone else took terrible advantage of the friendship, cut corners, broke rules, had chronic absenteeism. Several of them looked me right in the face and said they didn’t care who was hurt or upset by their decision to quit because they had to do what was right for them. Several of these friends verbally abused my son (I didn’t now until after, that they’d done this).

This last aide had been taking advantage of the friendship, was abusing the rules about being on her cell phone, was standing around talking to her friends when out in the community with my son, was scheduling appointments during work hours. I hadn’t known she was breaking the rules when out in the community. I recently asked my son why he never told me, he said, “I didn’t want to rock the boat.” Oddly enough, I’d not been enforcing rules too aggressively, because I was afraid of losing yet another Support Service Professional.

My husband, son, his Support Coordinator and I had lengthy conversations about the new vacancy and that my social circle no longer existed, there were no more friends to tap for the position and the strangers we’d used throughout the years have been a nightmare.

I’ve been deeply depressed, my stress level (which was a direct contributing factor to the heart attack I had two years ago) has been beyond anything I’ve had to deal with in the past. I had to acknowledge that I could not continue to act as the “Managing Employer” for his services. We would have to look into agency model services again, put the responsibility for hiring, managing staff in the hands of an agency. Luckily, my son’s Support Coordinator recommended an agency, relatively new to the area, one she enjoyed working with and had nothing but glowing reviews of.

We met with the Program Manager. It was a good meeting, she had a staff person who’d been coming to her asking for hours Tues. through Thurs., the exact days we needed staff for. A meet and greet was arranged and we all agreed it was a good match, She checked all our boxes, non-smoker, vaccinated, has her flu shot, doesn’t mind wearing a mask at the volunteer location, has experience in the position, has knowledge of my son’s diagnosis, agrees that a “friendship” complicates the relationship and she’s an older lady with life experience and a commitment to helping others, rather than selfishness and entitlement.

So, we shall give this a try, again. It currently feels like a weight has been lifted, by having all this responsibility taken from off my shoulders. I feel like I can breathe, I can focus on being Mom again, just being me.

I thought I’d feel like I failed, but I don’t. I know I did my best, I tried to make it work out for my son, so he can have the support he needs to be more independent. I did the best I could do, but honestly, I think it’s been a lot to expect a parent to do, while parenting a person with a disability, in my case being a person with disabilities as well.

When I contacted the agency we’ve been working with, to let them know we were going to try someone new, as they don’t offer agency model in our region, I honestly thought there would be negativity in response, but this is what I received in an email from the Program Manager…

“First I would like to tell you what a joy you have been to work with and I have enjoyed getting to know your son. I can understand your frustration with the Managing Employer role, it is a lot of responsibility and you are a very caring compassionate woman and you deserve to be treated with respect. You are not alone with the frustration in finding SSPs to work. It has been a struggle everywhere. I wish your son the best and I hope that he enjoys his new worker and he can once again enjoy getting out to do what he loves. If I can ever do anything to help please do not hesitate to reach out to me.”

I really do think this was the right decision to make. Time will tell.