College Savings Traded for Survival

Post Covid, our family life exploded. My twins, then 14 returned to education after 6 months of online learning. My son with ADHD struggled but he began HS. My daughter, a year behind, became very dysregulated at home and at school. Her moods shifted quickly and she became volatile, breaking anything in her path, hurting herself and sometimes us.

Instead of getting better, her OCD became extreme and illogical. Her thoughts were messy, and her actions dangerous. Police were called, ER visits and ‘boarding’ for inpatient care, therapy, med changes, specialists, nothing helped. It worsened. Cutting lead to suicidal ideation and then attempts. Sharps were locked up, medications and chemicals locked as well.

By age 15 she had had 4 serious suicidal attempts leading to more ER and inpatient treatments. Moved now to residential therapeutic school, her thoughts of jumping, later to understand it was a command hallucination she broke both feet jumping off an indoor balcony at school. That call came to begin the series of calls we would get saying she's on the way to an ER. With the help of the press, we secured an inpatient psych stay at a hospital well known for it’s excellence. With two broken feet, crutches, one walking boot, one cast she spent 8 weeks and her 16th birthday in the hospital. There she went from 100 lb to 86.

Psychosis was not seen by the hospital; now we can add on eating disorder and ‘refeeding’ to her long list of needs. The hospital had no plan to find a step down program, so we paid for a consultant to find a safe place to look deeper into her mental state. Unfortunately those places are across the country. After discharge, we spent one wonderful afternoon/evening together as a family, swimming in our pool, playing with our dog and watching movies. The next day we flew out to an assessment and stabilization center to drop off our beautiful child. It was the worst, lowest time of our lives, yet would prove to be the best decision we had. Day 2 they called with an update. Your daughter is interacting with internal stimuli, and has conversations with a boy in another state who tells her to do dangerous things. We’re ordering an MRI to rule out medical issues, but we have to consider that she has early onset schizophrenia.

Oooohhhh, why didn’t I ever consider that? THAT is why. Our world became lighter and darker all at once. Why didn’t the hospital see in 8 weeks what the new center saw in 2 days? Why didn’t all of the ER doctors and inpatients prior see this psychotic behavior? We had a team of doctors, therapists, dmh, dds. Why did no one help or care or support this for two years? After 6 weeks assessment, she stepped down to an RTC in her current residence state, that had experience with psychosis. She lasted there 3 weeks before the call. ‘She ran upstairs, tried to jump out the window, instead throwing herself down a flight of stairs’. Again commanded by this boy she calls OCD.

The next day she ran off the van a mile heading towards a busy street. We were lucky to catch her. The administration called us and stated she needed a much higher level of care, and a 1:1 while we waited for her spot to open at the new state's highest level of care for adolescents. There she would be evaluated further and assessed. Little did we know they would provide her lifesaving care and medication for another 6 months in a locked unit. The intake was in September. There she underwent a spinal to check for any other medical issues that could explain or treat her dangerous behaviors.

Clozapine was initiated after I explained no other medications had worked. I hoped for a miracle.

We all flew out for Christmas, and it was great to be all together but heartbreaking to leave. By February I was out there to visit on my own. By March my husband was collecting her and her things to come back to our home state. We found a tight container residential school that would take her as a step down, only 1.5 hours from our home! It seemed like a miracle to finally get her back safely. A week later we got a call, ‘she's had a seizure and she's being rushed to Children’s. So now bigger problems were ahead. I knew in that moment, her care would become trickier. It in that moment I realized her psych med clozapine would have to be managed conservatively because it lowers the seizure threshold. Three days later after a sleep deprived eeg she would gather another diagnosis: epilepsy. That would make my advocacy for her psychosis exponentially harder, not to mention all the safeguarding for seizures. Christmas this year would be at home.

After two long seizures in November, more meds would be added, and a seizure watch to prevent SUDEP (Sudden Unexpected Death in Epilepsy). Her new seizure plan was stricter, and unmanageable by her school, so she was essentially kicked out for the level of seizure plan. Mid-January she began a new residential school, a ‘looser container’, no locks, less staffing, and in downtown. She was thrilled, and we were hopeful that she’d be able to stay safe with more freedom. She enjoyed the outings, shopping, movies, museums, and more passes home.

By May she began struggling. Her twin and family friends were graduating, driving, and heading to college. She found a knife and cut deeply, and suicidal thoughts were plaguing her. 3 weeks ‘boarding’ and 3 weeks inpatient meant spending her second year inpatient for her 18th birthday. I received guardianship, and thank goodness we did, or communication and advocacy would have been blocked. I advocated for a higher level of care, longer term, and it was denied at an extremely well-known hospital. She was discharged. She was ok at first, but we asked for 1:1 at school because she was still struggling with the thoughts and urges, and self-harm was in her mindset.

We visited her, but didn’t have her come home because it seemed to trigger worse anxiety. The school year began, and school anxiety was high. We took her to ER for SI (Suicidal Ideation) late August. They sent her back without treatment, not seeing the severity of her condition. We had her on close watch, 1:1 at school, and she seemed happier. Mid-September we got the call from a fireman, first responder. You daughter is being rushed to the hospital; she had a ‘fall’, maybe s seizure, causing a fall into the penguin tank at the aquarium. She’s stable and responsive. We look at each other. We know it's not a seizure. It's number 6. Number 6 for the number of jumps from heights since this insanity began. We rush home from our friend's boat, thankful she’s alive, but astounded we are back at the ER. This would be number 12.

12 ER trips, for mental health decline, SI, SA (Suicide Attempt).

12 times ‘boarding’ at the ER. We identified 7 months to be the cumulative time we’ve been boarded in our local hospitals once this 25-day stay ended. This 6th jump would have her inpatient now for a year. 6 months inpatient, then 6 months so far at CCU, DMH highest level of care. And here we wait for the next steps. The unknown. No school placement. She's a junior at age 19 because of all the missed days. Another summer, walking past her unoccupied pink room left years ago, unoccupied due to serious mental illness. When I attend my therapy session today, if I recount this story, its like a sad movie that could not possibly be true.

Tomorrow the whole family heads to see my daughter. We will be able to bring the dog too. It will be every swirl of emotion, and the car ride home will be hard. We will survive moment by moment.