When you leave an abusive relationship, your abuser will try everything possible to maintain some semblance of control. For me one of the many ways he continued to establish dominance once I’d left for good was through my oldest daughter. We went through an ugly custody battle that last over a year and a half. Forget that in the three and a half years since she’d been born, he had barely lifted a finger to help. All of a sudden he couldn’t live without her and I was an unfit mother. After one particularly nasty court date I called my mother and told her that I just couldn’t keep going. Her response has been my mantra in the many years since and something I repeat to myself during the hard times. “We don’t give up on our children in this family”.
Her Truth
My mother lived this truth in her own way through my entire adolescence. If you look in the dictionary under problem teen, you’ll see my picture. After years of therapy I know now that PTSD is directly related to risky behaviors. My mother wouldn’t know about what I went through until I could finally talk about it in my 30’s. For her I was just her daughter who seemingly overnight went from her hyperactive but loving daughter to a wild child that would disappear for days on end. And that was 14 yr old me. It only got worse not better through my teens. With all that and so much more she never once gave up on me. Her unconditional love and support are the main reasons that I’ve made it so far.
My Truth and Schizophrenia
It became my truth that day crying into a courthouse payphone and then again nearly 15 years later when my youngest son was released from the air force and was diagnosed with Schizophrenia. I had no full understanding on the mental health condition except what you see in the media. I’d never known anyone with it. It doesn’t run in my family. It affects less than 1% of Americans. My first thought upon reading the statistics was “why me? Why my beautiful boy?” I can ask but I’ll most likely never know why. When it’s not passed down genetically the exact causes of schizophrenia are largely unknown.
Schizophrenia and My Son
What I do know is that my family and I would spend an unbelievable amount of time trying to keep him housed and medicated. Due to the angry voices in his head and the hallucinations that obscured reality and plagued him; finding housing for him was an ongoing misery. We couldn’t hospitalize him long term because even though he could become aggressive and threatening at times he was deemed not a danger to himself or to others and he would not willingly go in patient for the first 2 years. His youngest sister, who grew up idolizing her big brother, was now terrified of this zombie who would walk in circles through the house chuckling and muttering to people that weren’t there.
Schizophrenia and Medication
Schizophrenics have a really hard time staying on medications. To them, what they see and what they hear, is reality. I remember one conversation with my son during one of his more lucid medicated moments when he asked me why I’d never told him that everyone in the world is telepathic. Keeping him on a daily pill was impossible and he relapsed repeatedly because he couldn’t see the point in taking medication for something he couldn’t realize wasn’t normal. On top of that the side effects from the various pills that were tried made him gain weight, made him tired all the time, and a host of other issues.
Schizophrenia and the Unhoused
Because of the above reasons we desperately needed to get him into a supportive housing program. To be placed into a supportive living facility for mental health care you need to have a source of income. The problem was that the same government that deemed him too disabled to serve in our military refused to acknowledge his disability and grant him SSDI (Social Security Disability Insurance). Schizophrenics make up 10 to 20% of the homeless population. The lack of resources for those without income combined with the suspicion and paranoias they suffer from leaves many of those suffering from Schizophrenia more susceptible to having no one to take them in when they are unable to care for themselves.
Schizophrenia and a Lack of Resources
Like my mother said we don’t give up on our children in my family. We shuffled him from family home to family home, from shelter to shelter, from motel to motel, and finally a short stay at an in-patient facility during one of his more serious relapses. It took 2 years, 3 appeals, and finally hiring a lawyer to get him approved for SSDI. One of the greatest frustrations I expressed throughout those years was that our government labeled him disabled but refused to provide him with the disability support he needed. A better system for helping those with serious mental health issues needs to be in place. For that to occur more funding and better laws are needed.
Schizophrenia and Hope
Once his income was in place it was amazing how quickly life turned around for all of us. One of the most comprehensive centers for mental health care in my area of Mississippi is Region 8. February of 2024, we moved my son here from upstate New York. When he moved he was back off his meds again and his state issued healthcare was cancelled because Medicaid is done on a state, not federal, level. I called Region 8 and instead of the 3-month wait list I was used to back in New Jersey they got us in that week! He was provided interim healthcare through their collaboration with Johnson & Johnson and they agreed to switch him from his prescription pills to a shot. Something we’d been fighting for in New Jersey and New York since his diagnosis.
Schizophrenia and Antipsychotic Injections
The injections have been a game changer! They started once a month and now he only needs to go twice a year to receive them. This means no more relapses. This means I have my son back! For some it effectively treats the symptoms associated with schizophrenia. Unfortunately, for others it only mutes the symptoms. That is the case for my son.
the Present
He still hears the voices but they’re not as loud. He still sees things that aren’t there, but they don’t overwhelm his reality. He’s able to carry on conversations again. He is in the present and he understands that he has schizophrenia, and he can talk about it. To him the voices he still hears are real but he’s able to lower the volume, so they don’t steal his entire life. Most importantly my daughter has her big brother back. We were able to get him into a supportive living apartment not far from us and when he comes for visits, they play video games together and goof around they way they used to.
the Future
I’m not sure what tomorrow will look like for my son. I’m hopeful that research will continue and new game changers like the injections will be found. I want a fulfilling life for my child for him to be able to have a career, love, and a family of his own one day. Until that day though I’ll be there advocating for him, supporting him, and loving him. Because in this family? We don’t give up on our children.
Leave a Reply