Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

Verbalize Your Needs: Assertiveness as Self-Care #AtoZChallenge

Welcome to my letter V post in the #AtoZChallenge. Okay, I already posted a V post and originally didn’t want to write another one for this challenge or at least not so soon after posting my earlier post. However, I had a topic in mind already. Today, I’m going to write about using assertiveness as self-care.

Assertiveness is nothing more than sticking up for yourself appropriately. It doesn’t mean aggressively dictating how others need to treat you. Like, I am always reminded of a scene in the first Adrian Mole book by Sue Townsend, in which he desccribes that his mother went to an assertiveness training for women only and started to rigidly divide all household chores evenly between his father, herself and Adrian. Well, that’s not how it works.

Assertiveness also doesn’t mean passively agreeing to everything someone else says even if you don’t. I have a tendency to do that and then to complain to other people about the person’s behavior. That’s passive-aggressive.

In order to resolve interpersonal disagreements, I like the DEAR MAN approach from dialectical behavior therapy. DEAR MAN stands for:

D: Describe. Describe the situation as objectively as you can in order to get on the same page with the other person about what you’re actually talking about.

E: Express. Tell the other person how you feel and what you think. Use “I” statements and take responsibility for your stance.

A: Assert. This is where you verbalize what you need or want or don’t want. Be as clear as you can be. Don’t expect the other person to know what you mean if you’re vague.

Remember, we all have different love languages (which apply to friendships and family relationships too). Say your partner’s main way of expressing love is through kind words, but you prefer physical touch. Then you will consistently feel disappointed if they keep saying “I love you” without touching you. State clearly that you want your partner to hug you more often. COVID-19 permitting, they’ll most likely be happy to do so.

R: Reinforce. This means to reward the other person for their behavior. Sounds weird, right? You know you are not dealing with a 5-year-old who gets candy for eating his veggies. Okay, sometimes you are, but in this post I’m mostly talking about relationships between equals. However, what I mean is simply to focus on the positive you want instead of the negative behavior the other is showing you. Often we tend to react negatively in times of conflict, such as by yelling or threatening or withholding our affection. I definitely do. Instead, express how the other person’s changing behavior makes you feel more appreciated, respected or loved.

M: Mindful. Be present and in the moment. Don’t bring up past grievances. I’m often guilty of bringing past stuff into conflicts.

A: Assertive. Stay calm, make eye contact (if possible), keep an even voice. Don’t shout or threaten. It’s okay to express emotions, but let your words express your needs or wants.

N: Negotiate. Once you’ve done all these previous steps, it’s time to let the other person express their reasons for possibly not changing. You need to listen to these mindfully. If you can’t negotiate or you come to an impasse, it may help to ask the other person how they would react if they were in your situation. If nothing else works, you can always agree to disagree.

Worrying: Will I Be Kicked Out of the Care Facility?

I have had a lot of dreams in which I was kicked out of the care facility lately. They’re no fun. I don’t know why I have these dreams. I mean, yes, a new client may come to my home, but I didn’t find out about that until today. Besides, my staff say it doesn’t mean I’ll have to leave. After all, there’s still an available room in my home.

Still, it scares me. I worry that, if this other client needs a lot of support, I will not get my needs met. I mean, not because of this other client, but because staff will be busier. Oh my, this sounds incredibly attention-seeking. I don’t want to need more support than I can get.

And what if this other client is very noisy? He’ll most likely be assigned to the other communal room than the one I’m assigned to. However, I think he’ll attend my group at day activities, which is already very crowded and noisy as it is. I was told they had many more clients before I came, but well, then this place wouldn’t have been suitable to me.

I talked about my worries to my former support coordinator on the phone. She told me these are just my thoughts and there’s no reason I’ll have to leave because of this other client. Then again, I didn’t get to elaborate on my worries.

I don’t want to be seen as needing too much. I was often seen as needing too much. Either needing too much or claiming to need more than I got. The two are different. The people at the first day activities I attended with this agency, truly thought I needed one-on-one support most of the time, which isn’t even what I was asking for. The staff on my last psychiatric unit thought I needed little care but was just demanding a lot out of some feeling of inadequacy that was apparently unfounded. Either way, I was asked to leave the place. With the psych ward, things were a little nastier than with the day center, but the result was the same.

I saw the behavior specialist who worked for that first day center today. That fueled my worries even more. I mean, she was extremely supportive, but didn’t really know how to handle my issues either. Then again, she never got to talk to me beyond the one time when she made sure I got transferred from the industrial activities group to the sensory group. That was a good move, but when it didn’t fully work out, I guess the manager stepped in and said he’d been accommodating enough and I would have to leave. That’s what I think will happen here too. I mean, my staff are very accommodating, but what if it isn’t enough? Will we find other solutions? Will I get even more accommodations? Or will I at some point just be kicked out? I’m very unsure and that worries me.