Whispering gossip…

I was sitting here listening to my husband watching a video discussing how news can alter perception and behaviors. Just last night I was explaining to someone how gossip and rumors can taint a person’s view of another especially if coming from someone they may trust or love. The little birdy whispering in someone’s ear. Over time, they are little seeds planted that grow and can influence and even change the thoughts and perceptions of another. I remember learning about this many years ago in my psychology courses. And as time and experience has shown, it is very true.

It can alter a person’s viewpoint, memories, their feelings and ultimately change the dynamic of that person’s relationship. Maybe this is why the Bible is so hard on gossip and lying lips.

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I’m a Loser…

I’m a loser. I sponge off my husband and don’t ‘help financially’ by working a job. I’m lazy. I inconvenience others. I slow people down. It’s just anxiety. I’m not really sick. I’m faking it. I’m taking advantage of the system. I’m a bad parent. I don’t let my MIL use my bathroom in an emergency while going through chemo. It’s all MY fault my hubby couldn’t make his son’s wedding. I’m a liar. There’s nothing wrong with me, only mental health. I’m mental. I need a shrink. Somethings wrong with me. I’ve changed. I don’t take care of my kids. I neglect my children’s medical needs…

We have anger management but not for kids, they must be 18. 18, we don’t take your insurance. Self pay only.

Counseling and services with autism provider, the wait is currently 6 months out. Oh, you have Tricare? We only have 1 part time provider so the list is now well over a year out… after waiting over a month to get on that list.

We have EXACTLY what you need for your kid but it’s $8800 a month for the first three months then $7200 a month after that and the program is between 9 to 12 months long…. after the $2800 registration fee…

Oh, you have an urgent referral? Well, we triage all referrals and that doesn’t change the wait time much…

Where’s the website list with all the services needed listed in one place for easy access? Oh, you don’t have one for this state?

She has a WHAT in her spinal cord? Are you sure it’s benign, her backpain is pretty severe, in tears daily severe… No follow up MRI to see if there are any changes? I know google says (yes, google) that they can grow and lead to problems and neurological issues which she already has some signs of? Bye? That’s it? What’s causing the severe back pain, she’s just a child??

I have normal strength, it’s just with repetition and cold that it’s affected. You’ve run all the tests and there are no more? What about the CMAP and other test that actually test for the exact issue of repetition and cold paralysis? Wouldn’t that test prove what I’m saying I’m experiencing, I mean, that’s what it’s for and I haven’t had that one, not that I want it but it would show exactly what I’ve been talking about.. Oh, you have it but I don’t need it since my CK is low to low normal… My blood doesn’t show inflammation even when fully inflamed, I’m pretty weird when it comes to my blood tests… what? Bye? No test to prove what I’ve been talking about?? But.. I haven’t had that one and it would prove what I’m saying!! (door shuts).

No show. No show. No show… Don’t bother scheduling an appt with my kid till you can get your shit together. You have no idea what that does to an autistic child.

No show… I’m sorry. I know you were actually really looking forward to all his promises in the community and all that he shared… I know, our system sucks. I’m sorry it didn’t work out… again. (Where ARE you? Ghosted, BA in psych, only 2 in our state for BI services when we hired him).

This list could potentially be endless… It would blow your mind how deficient the system and lack of help is. Then add being disabled and needing help with the system on top of that and having no one to help navigate it. They see you for all of a few minutes then off to the next case. No one goes home thinking about you at night, nope, they’re not in your shoes so they don’t live or understand the issues that exists and the barriers to support.

FYI, I used to be the neighborhood mom. Most parents didn’t want all the neighborhood kids in their house so they came to ours. At least I knew where my kids were. I baked cookies, watched the kids, kept house, and had dinner on the table every night. We were once with a family gym membership where I found a joy in running. I was finally feeling in a healthy place after years of being ill off and on. I applied to law school. I paid for the LSAT and purchased all the books to study. I went from happy and functioning to ill, very disabled and in a wheelchair. Because I’m lazy. Just mental. I choose to be this way over the happy times with my family. Over active involvement and caretaking, a task I enjoyed. No, I rather sit stuck to my recliners day in and day out, staring at these 4 walls doing nothing while the dust grows, my muscles atrophy, the clutter piles up, our bellies rumble with hunger and the kids miss out on all the family things we used to do… I’m lazy. I sponge off my husband. Just don’t tell anyone about my 100% VA disability that covers half our income, you know, cause people don’t know about that since it’s not their business but apparently, our finances are since they’re spending time talking about it behind our backs then attacking me publicly on social media about it, like it’s their business in the first place… SMH.

Our world is a messed up place. There is a horrible shortage of help and services for people in need. There are way too many pompous judgmental people who rather point a finger than lift a finger. Too many people that thrive off drama rather than compassion and love and caring for others. Maybe I’m too sensitive for this world. Maybe I’m just exhausted and over it already. Maybe I just want to win the lottery, that will likely never happen, and live in peace and be able to afford hiring the real help we actually need because money can do that, insurance doesn’t. Our system doesn’t. But maybe I’m too lazy too even play…

No wonder the suicide rates are high, drug addiction is a thing, and people die in pain..

Snoop Dogg – Our Devastating Loss WHY??

As a disabled family, getting out of the home is a rare event. We’re isolated, stuck behind these 4 walls and events in the community take a lot of prep and planning and even then, there’s no guarantee of getting out, if it’s me attending, as I never know if it’s a migraine day, or my dysautonomia is so bad I can’t be upright. I typically have my wheelchair for events like concerts since I can’t stand for very long or walk far but my husband wasn’t able to attend so I couldn’t bring it. Winter typically keeps me in bed as the cold affects my ability to function quite a bit. I have kids on the spectrum who also suffer from my health issues. Everything takes careful planning so it’s rare we leave the home to do fun things.

On 12/14, we had a super special event planned for me and my son. For once, it was on a good day. We were both over the moon to attend this event. But an incident happed out in the community, the Ford Idaho Center in Nampa, and an injustice occurred. I am totally confused on what warranted the kind of incident and treatment that took place. An incident that not only traumatized ME but my child as well. We paid over $1600 which is a HUGE deal to us for my son and I to go to the Snoop Dogg concert AND have the after party where he was putting on a private show with food, music, a meet and greet, over $200 in loot and other gear. THAT was a huge deal to us both and we not only got kicked out of the concert but lost out on meeting him, getting our PAID for loot, and the entire experience for something that I don’t even know why.

I’ve been trying to find out WHY we were kicked out and no one has responded to our emails. This was our respite night. It seems like such a small thing to abled people but when you’re disabled and isolated, any event like this is a major deal for us. Had we hurt someone or threated security or was violent, then we’d absolutely deserve the loss of the event. The problem is that we did none of those things and at the time we were asked to leave, we were sitting together and Snoop Dogg had just come out so I don’t understand what we did wrong. My son has taken on all the guilt, the pain, the shame.

He had to witness me have a mental health breakdown outside the venue which I don’t ever do but I was treated so badly, I’m disabled and the cold affects my neuromuscular condition and my phone was in the venue which they wouldn’t let me find and it’s my assistive device with my whole life on there, alarms, appointments, calendar, my phone numbers, I can’t remember those type of things and I have to have that to manage.

The MAV guy refused to let me use the facilities (bathroom) and told me to, “go pull your pants down outside and pee.” Who says that? I explained my disability and they still refused to accommodate. I showed them my alert bracelets. They didn’t care. My son is in such an awful way right now and he has pretty severe depression so this just adds a whole other layer to things and he blames himself as he already thinks he’s a failure and he’s taken it all on himself.

There we were enjoying ourselves then everything gone, just like that, with no explanation, no recourse, no justice, and no return of the money I paid which was a huge amount to make this happen. No items that I paid for for both of us to receive that was saved for the end of the event so we didn’t have to hold it while the show was in process and no way to obtain what we paid for, no way to ever get back that once in a lifetime experience and no way to fix the damage that’s been done to us.

Why? Why did this happen? This was our night of respite. This was our chance to get out of these 4 walls that have isolated us for so long. And that got taken from us. I have written to the venue asking for answers. No one will write me back. How can one man (MAV security) make a call that effects a person’s life without any explanation, any way to defend themselves or anyway to stop an injustice from happening. How can that one man have so much control while we sit by helpless and mocked for my own disability? How can a person who is disabled be treated in a such a manor as I was without empathy, compassion, or regulations in place to keep someone in my condition from experiencing a situation like this that caused us harm?

What recourse do we have? How do we stop this from happening to someone else? How do we make sure that disabled people planning a special night out don’t have this happen to them? How do we get justice or compensation for our loss? I even wrote the venue prior about my disability checking on things and sharing how excited we were to attend. Why am I sharing this? To share what it’s like to live a disabled life. To share how very difficult it is to attend events out in the community. To share how something like this impacts our lives when you experience a devastation like this. To see if anyone has suggestions and a way for justice to prevail. To see how we can fix the system so people like us have the respite we so desperately need without the fear of discrimination or fear of having that taken in a heartbeat without a way of defending ourselves.

Injustice… The Helplessness of Injustice #SnoopDogg

Autism sucks. Yes, autism sucks. It’s not our neurotype or wiring that’s problematic. In fact, I really like the way in which we think and how we see a different side of things and perceive things a lot of people don’t. The problem is the disabilities that come along with it. The behaviors, the emotional dysregulation, the sensory processing issues, the comorbidities, the anxiety, depression and anger. Those are the things I’d change. Those are things a lot of people on the spectrum need help with and those are the things that help is seriously lacking for in our state and from what I’m hearing, many other states as well. There is simply a lack of appropriate services, lack of staffing, and total lack of understanding autism.

On paper, I have a THAT child. The problematic child. The misunderstood kid who is constantly judged for his brutal honestly, inability to handle emotions, and his verbal outbursts that might scare others or hurt people’s feelings but people don’t understand the difference between real threats and an autistic person going to the verbal extreme when feeling their emotions are out of control. For this, we are judged. We must be bad parents. We must NOT be helping our kid. We must be doing something wrong. We didn’t discipline him or we didn’t discipline him enough because that would have simply solved those ‘problems.’ Total lack of understanding. SMH. And we are judged. We are mocked. We are ridiculed. No body thinks about words vs actions. No body stops to see past the verbal language and into the actions of this child through the many years he’s suffered. If he’s such a bad kid, why has he not harmed someone? Why has he not made good on his verbal vomit? Why are any incidents against him only verbal in nature? Do they not see his love for animals? Even bugs, saving bugs from being squished and releasing them outside. His drive to help someone who’s struggling. Why don’t people see the good and only focus on the bad? The bad due to emotional regulation issues and lack of any proper supports to truly help him cope and learn appropriate skills to self regulate. The lack of a good mentor who can spend real time with him out in the community and bond with him. Where are these mentors?

So when an incident happens out in the community and an injustice occurs, the first thought of many is, “What did HE do this time?” “He must have deserved it.” “It’s his fault.” “The problem child.” But what if he didn’t do anything that warranted the kind of incident and treatment that took place on 12/14 of 2022? An incident that not only traumatized ME but my child as well. An incident that was completely unjust, discriminatory and caused a traumatic meltdown in not only my son, but me as well. An event that has scarred my brain and left me feeling vulnerable, helpless, lost, depressed, and so mortified and upset, I don’t know how to process it and get through it. Where is the justice? Where is the help? How does this wrong get made right? What are our options, our recourses? I can’t let this one go. I just can’t. I can’t stop ruminating on it and I can’t just move on. I’m traumatized. Traumatized by a situation that led to my own mental health collapse after a really tough year and spending a lot of money and excitement waiting to attend an event that meant so much to me and my child. An event that I spent so much anxiety, fear, and anxiousness over as I am disabled and it takes a lot of prep to leave my home and do something like this and in a moment, it was all taken away. Everything. Gone, just like that, with no explanation, no recourse, no justice, and no return of the money I paid which was a huge amount to make this happen. No items that I paid for for both of us to receive that was saved for the end of the event so we didn’t have to hold it while the show was in process and no way to obtain what we paid for, no way to ever get back that once in a lifetime experience and no way to fix the damage that’s been done to us. Why? Why did this happen? This was our night of respite. This was our chance to get out of these 4 walls that have isolated us for so long. And that got taken from us.

I have written to the venue asking for answers. No one will write me back. There MUST be answers. How can one man (MAV security) make a call that effects a person’s life without any explanation, any way to defend themselves or anyway to stop an injustice from happening. How can that one man have so much control while we sit by helpless and mocked for my own disability? How can a person who is disabled be treated in a such a manor as I was without empathy, compassion, or regulations in place to keep someone in my condition from experiencing a situation like this that caused me harm? I am not healthy enough to advocate for myself. My brain wants to completely shut down thinking about this night. But I need answers. I need restitution. I need help making this situation right and I don’t know how to do that. I don’t have the money to hire an attorney to fight on my behalf, to mediate this situation and file the right papers, pushing the venue to respond to my requests and get the restitution we so rightly deserve. I feel lost and so very vulnerable right now.