Points and Other Useless Things

Hope’s waiver worker came over yesterday. She had decided she was going to get Hope to stop being physically aggressive by telling her she was done playing games and make her have a serious conversation. She was suppose to be here for an hour. She stayed three and a half hours. With that kind of dedication and persistence, you would expect  some engagement from Hope. It didn’t happen. After the first hour and a half, the worker had agreement from Hope that there would be no more physical aggression. The Dad came home and Hope promptly hit him several times.

 

Each time the worker tried to engage Hope, Hope neatly changed the focus. She picked her tongue raw, screeched, covered her ears, started crying about something somebody was or wasn’t going to let her do. She refused to engage in any real conversation. I disengaged after two hours because my tongue was sore from biting it. When the worker left at 7 pm, all we had was a point system, modeled in the one used in the hospital.

 

Hope woke up this morning determined to do things her way. The Dad got her ready for school, I kept GB company and made lunches. By the time they left for school, Hope had no points for the morning.

 

I am waiting for the worker’s supervisor to call me back.

9 thoughts on “Points and Other Useless Things

  1. I am so sorry– so impressed by your dedication. I know what those mornings are like-almost to your intensity, but not quite. May God continue to give you much grace to run the race!

  2. You may have tried everything you’ve heard, and I am sorry for your feeling hopeless and helpless.

    I agree with Diane on the fact that a cause-consequence approach does not sound working at all (if Hope’s behavior did not improve despite all your dedication, then it is time for a strategy change).

    So, I will suggest exactly the same thing as Diane : shifting perspective.
    Hope does not respond to lecture, consequences, punishment… ? It is time for looking at another approach.

    My father seems suffering from ADHD, despite he has always been reluctant at seeking a diagnosis and treatment. In consequence, he self-medicates his ADHD behavior with substances like alcohol and pot.
    I can tell you that my trauma of having been considered by him as “worthless”, “pretends to suffer”, “her mother is only an anxious mother who searches a disability to dismiss herself from her responsibilities”… He did it with his wife, a 0.02$ psychologist. I have no relationships with her, I only call her “his wife”.
    Each time I was lectured, punished… for something I’ve done, I was even more angry and resentful. So I was doing even worse. It was a vicious circle and exhausting for everyone.

    What I’ve been reading from you about Hope looks like that.

    So, in such a situation, shift perspective. What you put in place did not work no matter how hard you tried.
    The problem then is not you, but what you’ve previously applied : the “sticking charts, lecturing, punishing….” did not work for Hope and leading to some peace in family. The problem is the program which does not suits neither your needs (who wants chaos ? Nobody) nor Hope’s needs.

    On dealing with my exhausting father, I’ve read “The Explosive Child”. Like its name says, it helps dealing with explosive behaviors but what the title does not say is that it works also for adults.

    My first step was prioritizing the issues. I know you’ve probably heard it before, but I’ve also read that you are on so many different battles at the same time with Hope that no wonder you are exhausted !! You cannot be fresh and happy if you are battling on fifty matters at the same time, and same for everyone.
    I assure you that shortening your list can also help with the pressure.
    At the beginning, focus on a maximum three important matters, the non negotiable rules (mainly health and safety).
    With my father, it was and is still drunk driving, lying (telling me something to cover a mistake) and basic safety (like fasten a seat belt in car all the time).
    Probably for Hope, it will be very different.
    The more I prioritize the issues, the more it lifts a weight over my shoulders.
    Then, you can list what you prefer, but you won’t put yourself in danger for it.
    And at the end, you list what would you like in an ideal world.
    For my father, having a fight about his Bob Squarepants T-shirt and his Mickey Mouse socks for a grocery shopping does not worth the effort (he is teased by someone else because of these ? His problem, not mine).
    I would be much more concerned about his smoking or reckless driving (also that he has a 8yo son) than I would be concerned about his huge backpack.

    Then, I am firm only on the aim. But we discuss together about the solution to reach the aim.
    The book calls it “Plan B”.
    Don’t expect to happen a “perfect plan B” overnight. In fact, it is more an aim than a mean.
    So, don’t beat yourself up if you cannot perfectly plan B overnight, because it is very unlikely to happen.

    When you restrain Hope, no matter how hard it is when she kicks you, tell her all the time that you love her and everything will be okay, until she calms herself.
    Even when one of her rages happen in public.
    I cannot say that it is easy, but it cannot hurt neither you, nor Hope on the long run.

    Also, when Hope is engaged in a harmless but annoying behavior, like silly noises, argues… ignore.
    It is really the safest and most effective way to extinguish a harmless but annoying behavior.
    When she argues back, ignore and do something else even when Hope persists.
    The more you stay stoic, the more you’ll be able to extinguish such a behavior over the time.

    When Hope does something positive, congratulate her like if she won the Gold Medal at Olympics.
    You think that it is impossible ? Not as much as you think.

    When you want to refer her as inappropriate behavior, do it on a matter of fact phrasing : Hope is not unacceptable, her behavior is unacceptable.

    I empathize with you that they are not easy to do on the long run.
    Don’t consider yourself as “a failure” because you are not a failure. You do your best, and even the best of the bests makes mistakes.

    Take care

  3. I forgot, as silly as it may sound, but I’ve noticed that managing behavior in FASD, Prader-Willi syndrome, ADHD, RAD…. are very similar.
    Of course, we adapt the plan on the person and her needs (for example, a person with Prader-Willi syndrome often live in a home where all food access are locked because the person can eat to death due to the illness. But not all persons with Prader-Willi syndrome need such extreme measures, it depends on the person).

    But the basics are the same.

    So, I can also suggest you to read the website of the Prader-Willi Syndrome Association : http://www.pwsausa.org/links/ look at Positive Behavior tips for educators.
    They have been very helpful in my home to manage my ADHD and Single Sided Deafness combinated behavior : we could find plenty of peace in family with these tips, even if they are aimed for another disability.
    It was more helpful than harmful.

    I cross my fingers for you

  4. No advice, just imaginary hugs and wine bottles, and the thought that your list of topics always makes me laugh when I come to Mrs. Very Stupid Chairperson. I think she may have a cousin, Ms. Very Incredibly Dense and Unhelpful Waiver Worker. Oh, and a sorority sister, Mrs. Unbelievably Less Than No Help Waiver Supervisor.

  5. I feel for you. It’s no laughing matter, but I started snorting derisively at “She had decided she was going to get Hope to …” Whatever it was, with that introduction, it was bound to fail. I do like your stance of sitting by and biting your tongue while the worker tries to work her voodoo—LOL. I tend to get into masked discussions with the Helpful Providers about how journaling, points, rewards, consequences, explanations, negotiations, etc. are not likely to begin working all of a sudden, when none of them have worked before—all while T. is in the room, watching us wrangle. Not good. I wish I had my own special voodoo to share with you: I don’t. Just wishing you all a better tomorrow.

  6. The more trauma mama blogs I follow over time the more it seems ‘support services’ so often make things so much more stressful for mother and child by not having a basic understanding of RAD and trauma, or even awareness that this is a specialist field, and often knowing far less than the mother does on what helps. There seems to be no higher level knowledge to turn to when you’re parenting a child so stressed and triggered that not even your own hard won experience and knowledge is enough to reach them, especially when you must be on your knees right now with physical, mental and emotional exhaustion. I’m so sorry you and Hope are going through this, you’ve both been left to deal with someone else’s mess that neither of you made or deserved and it’s terribly unfair. Love and hugs, I wish I could offer something more practically helpful. {}

  7. Silly waiver worker to declare that she was through playing games. She lost the battle at that point by revealing that she was losing patience. Hope knows the worst that will happen will be a stern lecture that she can ignore and, with any luck, possibly a trip back to the hospital for more movies and attention from sympathetic strangers.
    It sounds crazy but I see Hope as having a lot going for her. She is stubborn and determined to get what she wants. If she can learn to harness her anger and to trust people she could eventually have a very fulfilling life.

  8. Oh my. Because a waiver worker is soooo magical and sooooo special and sooooo gifted that she can turn a child with severe mental health needs around in the span of a single conversation. Because nobody’s ever thought of that before. ****sigh******

    You and your whole family are in my thoughts and prayers.

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