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.

Holiday Season


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In A Charlie Brown Christmas, Charlie Brown says to Linus… “I think there must be something wrong with me, Linus. Christmas is coming, but I’m not happy. I don’t feel the way I’m supposed to feel.” I’d change that slightly and say the holiday season is here, but I’m not happy, I don’t feel the way I’m supposed to feel.

The holidays are usually a source of excitement for me, starting with Halloween. I love decorating, the jack-o-lanterns, picking out candy to give to trick or treaters, etc. I love getting the ingredients from the store for Thanksgiving dinner, bringing in the lights to check out for Christmas decorating, inside and out. It’s all exciting, there’s a lot of anticipation, but none this year.

The last couple of Halloweens we’ve only had two or three trick or treaters. I had been looking forward to this Halloween, as I was anxious to see KD’s costume, to dress up for him, even if we got no other kids, but since his mother was my son’s SSP and she quit, her sister attacked me on Facebook, her father won’t talk to us after a 37 year friendship, there isn’t much to look forward to. All of my Halloween/Autumn lights were no good this year, had to buy new and couldn’t find what we wanted anywhere, so we made do with white twinkle lights, cut back on decorations.

The last couple Thanksgivings we had our friend of 37 years over for Thanksgiving dinner, his daughter, the former SSP had come last year and I think one other time. Obviously they won’t be coming this year, it will just be us.

This is the first holiday season without my husband’s mother. She really never participated in holidays with us, only two or three times in the 37 years we’ve been married, but it’s the idea that she’s no longer here, there are no more opportunities to convince her to share holidays with us.

This is the second holiday season without my best friend of 43 years. I’ve spent a year wanting to talk to her, opening up her facebook messenger to chat with her, update her on something happening in my life, to find out how she’s doing.

This year, there’s a significant rift between us and our neighbor over the fence and her asparagus plants. Our friends who bred our dog moved an hour away, so visiting them is not something we are able to do. We’ve only been to their house once since they moved.

There are a couple friends/relatives who needed us when they were going through hard times, but now they aren’t too interested in us anymore.

I just can’t get into the holiday spirit, as hard as I try. Christmas shopping is terribly difficult, as my husband is the only one of us who ever wants anything, and we really don’t have the money to spend, aside from the fact that shelves are bare everywhere because of shipping being backed up.

I had a huge meltdown last Thursday, as the riding mower wouldn’t start, I push mowed the whole backyard and suffered terrible pain as a result. It just feels as if nothing is going well, certainly not as it has in the past. I’m feeling very much alone, very much disposed of, as if I have no (or aren’t permitted to have) feelings. I’m tired, worn out, in terrible pain, so very limited in what I can do and enjoy. I feel as though I’m living in fear a lot of the time, fear of loneliness, fear of increasing pain, fear of loss of mobility, fear that I will do something completely innocent and normal but hurt myself. I fear not being able to take care of my dog, to simply walk her. I feel as if I’m just waiting for the next setback.

A person I was once close to used to call me “Chuck” in reference to Charlie Brown. I never understood why she did that, but as I get older, I certainly identify with Charlie Brown.

Blindsided… Still Struggling


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Every day my son greets me in the morning and begins talking about his former Support Service Professional (SSP) quitting and how will we get things back on track. This is virtually the only topic of conversation from him since it happened two weeks ago. It’s hard to move on when he’s perseverating on what happened. He keeps telling me he needs to vent. I understand that and I understand that perseverating on traumatic events is common for his diagnosis. Understanding it doesn’t make it easier for me to cope with how it prevents me from moving on.

One of the things I’ve heard before, as well as this time, that is troubling to me, is this idea that if someone hurts you because doing so allows them to have “another opportunity to grow and have a better lifestyle for my family” that negates the damage their choice does to you and your right to acknowledge it.

I was chastised for not “being happy for” the former SSP, suggesting that it was wrong of me to be concerned about how her choices impacted my child and family. She is doing what’s best for her family, but it’s wrong of me to think about my family?

I’m sorry, she is not a priority over my son and my family.

I spent about two years listening to her complain about how her family members don’t make her a priority. Her sister doesn’t make time for her when she wants, doesn’t do holidays with her family, only wants her when she needs a ride somewhere; her father promised to help her, but complains about her not letting him have any time to himself, wants to have a life of his own, doesn’t answer or return her calls or texts, hangs up on her, etc. She was constantly complaining about health issues, showing up obviously not having slept the night before, complaining about her roommate, her brother’s kids whom she volunteered to take in temporarily. After a while it felt as if she was just looking for sympathy. A lot of her issues were self-made, or because she wasn’t getting her way.

My son had to hear about all of that. I tried to be supportive, as a lot of what she described sounded like my own family’s issues. Oddly enough, when I told her what she was telling me really made me question her father’s honesty, the person he’d always shown himself to be, she’d tell me they talked and everything was okay, she’d try to walk back the things she’d told me.

She’d begun having issues at my son’s volunteer opportunity, not wanting to wear her mask appropriately, being overheated and vomiting almost daily, having to leave him to use the bathroom or go outside to get fresh air. I tried to be sympathetic and suggest some ways to mitigate those issues, even when the volunteer coordinator called to complain about her attitude and behavior.

I feel as if I tried very hard to be understanding, empathetic, but ending my son’s services and causing him distress is where I draw the line. He’s my priority, not his SSP, not his SSP’s family.

Her father had been a friend of ours for close to 38 years and when I hired her he said he wanted to know nothing about her job, how it was working out, etc., he wanted left out of it because he didn’t want it to damage our friendship… he’s not spoken to either my husband or myself since returning his daughter’s house key. I’d really thought he’d contact my husband, if not me, to let him know he wasn’t happy with his daughter’s behavior and was sorry it hurt us. Instead, he’s not even communicating on Facebook as he always had, no private messages, no comments, nothing.

Once again, it appears that after losing an SSP we have lost a valued friendship.

Here We Go Again… Blindsided


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Once again my son’s Support Service Professional (SSP) has quit, with no warning. So we’re back to finding a new SSP so my son can continue his waiver services.

Friday evening I checked my email to find an email with no subject from this person, to the agency we use for services. She informed them she was resigning from her position effective immediately as she found “another opportunity to grow and have a better lifestyle for my family.” I’d been copied on the email. No phone call, text, private message. She’d told me she was having an interview, but had only ever talked about finding another client to work with on the days she didn’t work with my son. I never imagined she’d quit, everything she’d said preceding this email had indicated her intention to continue working with my son.

My son, upon learning about the email, just kept asking me, “Are you serious?” He broke down, saying “I’m screwed, what are we going to do now?” I cried, for the better part of an hour, then called a friend and vented to her, crying again. This is such a stressful process. It’s been explained to me that there is a time limit on how long we have to replace staff, as services must be utilized, or someone on the waiting list can be given your “slot.”

I immediately went on Facebook and posted the position, as most of my friends there are either parents or family members of people with disabilities, and/or they have disabilities or chronic illnesses themselves. Many work within this field or have in the past and still have some contacts. I then posted about his reaction, how I need to stop becoming so invested in these people, caring so much. Following that post I posted about how hard it is to keep my stress, anxiety, depression and panic under control so my son isn’t influenced by it. I talked about how hard this is for us and the threat it carries to his future independence and needs.

Two friends asked me to make the post about the position public, so I did. In short order, our former SSP’s sister commented on that post, because my profile is set to friends only, so she couldn’t see anything else I’d posted. She accused me of doing nothing but being petty and trashing her sister. It’s important to note, I never used her name or the agency’s name.

“She was your friend too and yet when she found a better opportunity for herself and her family instead of being happy for her you trash her on social media?” Apparently I’m expected to put her family above my son’s best interests. I’m not supposed to prioritize my son and my family.

She then went on… “You never allowed her to actually help him. Every time she worked on his behavior deemed uncivil or a poor mannerism you were right there to correct her with some lame excuse.” She claimed that was her job, and that I didn’t want to discourage him. There has never been a time when anyone who has ever worked with my son accused him of uncivil behavior or poor mannerisms. We were instructed by professionals years ago that we should not correct him, but model appropriate behavior and interactions. He’s never had any “behaviors” that required correction. An SSP is not a behavioral specialist. Her role was to support him in the community, volunteering; model appropriate social interactions in public settings; work on fine motor skills and healthy lifestyle.

That her sister knew anything about my son, her sister’s work was a clear violation of HIPAA. A number of people commented on the post immediately that it was a HIPAA violation for her sister to have discussed anything with her, as she’d been directed upon being hired that she could not talk to her friends or family about her client, the work she was doing, etc. As the SSP’s managing employer, it was my responsibility to direct her in her interactions with my son. She never came to me about any “uncivil behaviors or mannerisms”, she did talk to me about him not wearing his glasses, and each time I spoke to him about it both in front of her and after she finished her shift.

It went on and on… she failed, of course, to mention that her sister asked for a raise and I gave her one, raising her pay to the top level available in this position for our budget. She failed to mention that I let her slide when she repeatedly broke agency rules by taking personal phone calls, answering texts and private messages (usually from her sister), that I tolerated babysitter issues, doctor appointments scheduled during work hours, constant health complaints, complaints about the heat and wearing a mask while volunteering with him, non-stop complaints about her family members, particularly her dad and brother, that she’d stood around visiting with former coworkers and friends when out shopping with my son though that was prohibited. We bought her things she needed to help her out, toilet paper, paper towels, facial tissue, sanitary products (some of which she repaid us for). She didn’t mention that I’d provided her sister lunch a number of times, or that I gave her additional hours using companion services. She didn’t mention the dinners we’d invited her to or the presents we got for her son at Christmas, Easter, his birthdays. She didn’t acknowledge how my son had bought t-shirts to tie dye and the tie dye kits and she made more for herself that he did, taking his t-shirts.

I never wanted to be seen as petty, or nit picking. I didn’t want to cause a problem with her dad and us, didn’t want to risk losing my son’s SSP by making her mad at me. She talked a lot about how she’d stabbed someone, been arrested, had a family as friends who would “come after” anyone who hurt or upset her. They supposedly would be willing to do anything to anyone she saw as an enemy.

My son had a quarterly monitoring due, so she moved up the date so my son could talk to someone. She looked over all the posts and comments and was stunned. Her face contorted as she read the sister’s comment. She handed my phone back and said I did not trash her sister, I didn’t mention anyone, I was concerned and frustrated and vented. She said nothing the sister said was true. She’d talked to the SSP and asked how things were going, she was told my son was great and everything was fine. She got to look at monthly reports and never saw any mention that my son had “uncivil behaviors” or objectionable “mannerisms.” (btw ‘mannerisms’ is a term used by the medical community to describe hand flapping, stiffening, involuntary body movements people with FXS sometimes demonstrate.) She confirmed that an SSP is not responsible for “correcting” anything, they are used for support in the community, directed to model appropriate interactions and social activity. She also commented that I, as the “managing employer” am responsible to provide direction to the SSP, I am the employer, before the agency, who gives me direction when needed. She confirmed there was a HIPAA violation by the former SSP, as she clearly had talked about her position, my son, her work with her sister.

After consulting her supervisor, the coordinator contacted me and said, yes there was a HIPAA violation, but seeing as how she’d quit with our agency, there really was no one to report it to. The agency could be told, so that they were aware should she ever try to be hired by them again, but other than that, any reporting of the violation would be blamed on me, even if she or her supervisor did it.

People on Facebook were so concerned, so angered by it, they sent me screen shots of the sister’s comment. They posted, addressing her directly, that she’d outed her sister as having violated HIPAA.

So here we are again. We have discussed trying agency model at a local agency, rather than continuing to direct and manage services ourselves. We would no longer have the responsibility of choosing an SSP.

Our friend, the SSP’s father, has not contacted us once since this all happened. I have promised my son that from here forward I’ll not be befriending any future SSP, will not allow them to talk to me about kids, family, health issues, etc. I don’t want to hear it anymore, I’m too empathetic. It blurs the lines too much.

I truly don’t understand how people do things like this, why they think their life and happiness should be a priority to others. I can’t imagine someone hurting one of their kids and either of them saying, so glad for you, no problem, that’s great. If they could, I’d seriously question their judgment as parents.

Cooler Temps, Finishing projects


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The last few days we’ve had temps in the low to mid 70’s. It’s been breezy, a bit rainy. Feels very much like Autumn.

I’ve been decorating for Autumn, inside the house a little at a time. I can’t decorate outside yet, as I need some new lights and leaf garlands, can’t get corn shocks or pumpkins yet either, as they aren’t available yet.

We spent yesterday finishing up some projects we’ve been wanting to get done. We set the pavers in the yard, for the grill and in front of where the swing usually sets, as it gets muddy there and is very slippery in the winter. This way it will be easier to shovel.

I painted the back door, to finish up the door maintenance I started a couple weeks ago. I also used some of the remaining white paint to do a base coat on the oil tank. It needs to be finished, then we’ll put tan paint on, to make it blend in more with the house. I also weeded the azalea bed and around the deck where some break through weeds popped up. I threw the remaining straw in the garbage can and pulled the doggy dooley out of the ground. We filled in the holes from the dooley and the rabbit nests throughout the yard. My husband cleaned out and organized the shed to make room for a small riding lawn mower our friends offered us, but haven’t dropped off yet.

The last thing we have to do is finish up the lattice along the ramp and either side of the front steps, to close it all in. Hopefully by the time we finish up, I’ll have the rest of the decorations I want to put out for Autumn. We’ve gotten so much done this year around the outside of the house. It’s looking so nice.

This weather, as with every year before, has really had me reminiscing about Autumns and Halloweens past. Good memories from childhood usually don’t include family or friends, as much as the weather, the leaves, the feelings, sights, smells of the time.

A cool evening breeze can stir pleasant memories, the smell of neighborhood fire pits remind me of fireplaces, piles of burning leaves along the streets. Some trees have begun to change color, the trees that are routinely first to change. Mornings are foggy, evenings are growing dark earlier. School has just begun, mornings are filled with the sound of kids waiting for buses, buses slowly moving throughout the neighborhood.

Walks with my Noni are slower, cooler, more comfortable and enjoyable. I can actually be outside without being soaking wet and having to change my clothes. Windows are open, the AC is off, and the house is cooler, fresher. Nights are more comfortable, not feeling like the arctic with the AC running, but windows open with comfortable breezes coming in, just cool enough to not need to be cuddled under the blankets.

Absolutely love this time of year. Trying to soak it all in and be grateful.

I Think I Have “Abuse Me” Stamped On My Forehead


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By no means am I a perfect person. I make a lot of mistakes, but I try to fix them, to do things for people without expectation. I tend to spend a lot of time walking on egg shells around a lot of people, hoping to avoid conflict, misunderstandings or a falling out. As a result, I’m always worried about disappointing or upsetting people.

Since we first moved here, we have mowed and done the weed whacking on our side of our neighbor’s fence. No one asked us to do it, we just did it, it was easier for us to do it. When we put our fence up for our dog, I not only weeded on our side of our fence, but also reached through between the fences and hand weeded that area. Every time I weeded my hands and wrists would be severely bruised and swollen afterwards. I went through numerous pairs of gardening gloves.

Our neighbor would put her hand clippers in under her fence and clip, but never reached all the way across to our fence. She didn’t do much weeding under or between her asparagus plants, which are left to go to seed and become bushy fern-like plants that push through our fence.

I found a natural, pet-safe weed spray, (apple cider vinegar, sea salt and dish liquid) that killed the weeds. They browned, shriveled up and died. The roots were not killed, so they would come back, but it was easier to spray them, than crawl around on the ground pulling them by hand. I saw no difference between the withering brown plants and exposed earth after pulling them out, so it was acceptable to me to handle the weeds in this way.

My neighbor had a fit when I sprayed the first time. She said it came through the fence and got on some of her grass. Since that time I’ve been really careful when spraying, tried to be aware of any breeze, to direct the spray directly down on my side of the fence.

About 2 months ago I sat out in the sun, for 6 hours hand pulling the weeds along that section of fence. The next day I did the same thing with the weeds along our side neighbor’s fence, taking me 4 hours. I was so crippled afterwards. I could hardly use my hands, my shoulders hurt so bad I couldn’t pick anything up, had trouble getting dressed. It took me about 2 weeks and shoulder injections to be able to use my arms normally again.

The weeds were, in some spots along the back fence, between 8 and 18 inches high. My dog eats the weeds, the asparagus that comes through the fence and I’m always concerned that unmaintained weeds are a breeding ground for ticks. I decided to spray. It was a hot day, no air moving, very humid. I was super careful when spraying, but I just couldn’t sit and do it by hand again. When I was done I felt pretty good about it. Two days later, as I was in the yard with my dog, I saw my neighbor in her yard, at her garden. I said, “hey, there’s B” (using B here, rather than her name). She came over toward the fence, very aggressive. “You sprayed again, didn’t you?” I said yeah, couldn’t do the hand weeding again. She said “You killed my grass! I spend thousands of dollars a year having my yard treated to make it nice and you killed my grass. I told you not to do that because the wind carries it over here.” I apologized, told her I hadn’t been out along the fence since spraying it, so I wasn’t aware. I didn’t do it on purpose, tried to be especially careful. She went on… “I tell them not to treat for grubs right up along the fence because of your dog, but from now on I don’t care, I’m telling them to go ahead, right up to the fence.” (Apparently the possibility of poisoning my dog is acceptible as retaliation for temporarily shrivelling some grass.)

Again, I apologized and told her I didn’t do it on purpose. I tried to be very careful. She slammed her hands down on the tops of our fences and complained about them being so close, which made no sense because there had been enough room between the fences to put a weed whacker between, until she had her fence moved right up against ours. She went back and relitigated us putting our fence up, complained about placement on property line, that our fence is on the inside of our posts, that the person who helped my husband put it up messed up some of her asparagus plants. I pointed out to her again, for the fifth or sixth time that we had to submit drawings, measurements for the fence, they came and gave approval to go ahead. After we were done they inspected it again and told us it was fine. It’s allowed to be on the property line, which it is.

She went on ranting, yelling loudly at me, that she’s tired of this whole f*cking neighborhood, tired of the f*cking kids, thinks she should move, wishes she’d never moved here years ago. She said when she saw her grass she went in the house and screamed, thought she was having a stroke. She yelled and cursed about the fireworks in the neighborhood, the neighbors who have trash and things piled around their homes, sheds, garages. She complained about the smell of firepits and how it makes her sick, that she heard our neighbor outside talking one morning at 3:30 a.m. and wanted to yell “Shut the f*ck up” and slam her window down. She complained about a little girl across the alley throwing stones toward her yard, that she had to pick up and said we probably had them in our yard too. I told her I don’t know, I’m not able to mow anymore, that was when she commented about how my husband mows, “He mows so g*d d*mn low that he’d throw them all over if they were in your yard.” She complained about our side neighbor’s tree at the corner of his fence, near her property, that it’s hanging over her fence and she’s going to have to pay out of her own pocket to have it trimmed because he wouldn’t do anything about it.

My PTSD kicked in and as I apologized again, I started to cry, to shake. She said, reaching down and pulling at the brown weeds, “Look how f*cking horrible this looks.” I told her I would come out and pull everything between the fences, to try to rectify what I could. She said, “No, you can’t do that. You shouldn’t do that. I shouldn’t have said anything, I apologize, you have issues…” I told her I was taught if you make a mistake you need to try to fix it and since I can’t unspray, I could pull out the dead stuff. I reminded her it would grow back in about 2 weeks, there’d be no sign of having sprayed.

I went back out that night and pulled about a third of the length of the fence. The next morning I finished the rest of the fenceline. As I was pulling the dead stuff, I realized that there might have been a strip about 3 feet long, 2 inches wide that was brown on her side of the fence. Had she weed whacked, she’d have cut off the brown part and wouldn’t have had anything to get upset over.

The next day I contacted our neighbor on the side and apologized if it upset him too. He waved me off saying it’s just grass and a little vinegar, it’ll grow back, nothing to get upset about.

This isn’t the first time she’s been unreasonable, unloading her frustrations and anger on me. After we initially put the fence up we didn’t speak for a year and a half. I didn’t want the conflict and didn’t appreciate the way she treated me. She’d put up a new fence and a gate onto our property saying she had a right to access this little sliver of land on the outside of her fence. I told her where she put the gate I couldn’t see it from any window in my house, wouldn’t know when it was open, when she was on our side of the fence, so would be uncomfortable letting Kodi out in his own yard, for fear of startling her, having her fall or him knocking her down on our property and her getting hurt. That was why we put our fence up, so she wouldn’t accidentally let him escape our yard through hers, or either would get hurt. She’d screamed and screamed that she didn’t need permission to enter our yard to care for hers.

The past couple of weeks have been extremely stressful. I had trouble getting my pain meds from my pharmacy, my son’s aide missed all but 2.5 hours of her scheduled work time, I’ve been having trouble sleeping, and after this abusive rant from my neighbor, had a migraine for days and spent hours that day crying uncontrollably.

My abusive mother used to say I couldn’t do anything right, there were no such things as accidents, just irresponsible acts. I was nothing but a f*ck up.

I honestly wonder sometimes if I don’t have “abuse me” tattooed on my forehead.