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..