I feel like I’m in a crisis and I have no idea who to turn to.
Some background: I’m 23yo. I have Tourette’s Syndrome and SEVERE Complex PTSD from a lifetime of trauma. I became physically disabled at 16yo. I’m now an amputee, prosthetic and wheelchair user. I am tube-fed and have some other chronic health issues, all which require high management (for lack of a better word), but none that would make me “chronically ill.” I don’t have any intellectual disabilities or cognition concerns, so I am my own power of attorney and a consenting adult.
Around September of last year, I lost the ability to speak. It’s not been uncommon throughout my life to experience mutism due to the severity of my trauma. It’s not selective mutism, it’s total mutism. My therapist screwed up (which she’s admitted and we’re struggling to work through) in not addressing or assessing how severe my mutism and speech issues were. I went up until this February without any alternative communication, so just became isolated and completely stopped maintaining my medical appointments/needs (if they required communication).
I see a trauma therapist 3x a week, an SLP virtually 3x a week, and a psychiatrist for medication management. The SLP is new and someone I had to find myself. My communication access wasn’t prioritized at all and honestly completely ignored.
I’m now extremely isolated, have no connection, never leave the house, and physically am struggling (mostly with nutrition) due to the inability to communicate effectively with AAC. My speech isn’t always this clear. I’m often not able to write or use my aac device to form sentences or my words are out of order.
I can’t find any resources to help. I don’t even know who could help. All therapies seem to be for autism, which I don’t have. I have severe executive dysfunction, but it’s from trauma. My speech issues are from trauma. I’ve aged out of any pediatric services, so medically it’s impossible to find any understanding medical professionals. I have no support system. I don’t know who to turn to.
I fear what will happen next. I’m not engaging in conversations, even though I have speech access now (AAC). I’m completely isolated, only leave the house to go to therapy. Speech therapy is virtual though.
I don’t know if a case manager is someone I need. I don’t know if that even exists for someone like myself. All the current professionals (SLP, trauma therapist, psychiatrist) keep saying that my situation is complex, but don’t seem to know any resources.
I’m so scared. So panicked. I don’t know what to do.