Early in 2011 my daughter was diagnosed with NOS psychotic disorder which is looking more and more like schiophrenia. She will be 16 in the spring. I had the misconception that we had caught it so early that we would be several steps ahead of it, but I'm discovering that isn't how this illness works. And I'm heartbroken and don't know what I need to do besides everything else. We have a good network of professionals she is working with and she is very good about taking her medication (we're currently switching her from Abilify to Risperidone), I just need to know practical things now. Will medication help with her negative symptoms, like her flat affect? Do I need to set up some sort of trust for her? I try not to get overwhelmed with her future, but it's difficult. And lately I'm stuck in a period of denial, that it can't possibly be this, because, well, it just can't, right? Ugh.
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I'm the community leader here and would like to welcome you to the Connection.
The short answer is that real recovery is possible. You will need to set up a special needs trust for your daughter especially if she collects a government disability check. A special needs trust will give her money to pay for expenses without jeopardizing her ability to collect the government check.
The long I answer I will give you is based on my own experience. I recommend 100 percent without reservation that your daughter join the life around her, go to college or work, be in relationships, set goals and work on achieving them. Within three years of being diagnosed with SZ, I stopped collecting government disability checks, had a full-time job with health benefits and thus didn't need Medicaid, and lived on my own in a studio near the beach.
The money she will earn from a government disability check will be paltry. Keep hopeful that she can work at a full-time job that offers health benefits. Work together with her to help her set goals that she can easily achieve, and then support her in more challenging goals.
Your daughter can recover. She doesn't need to collect a disability check for the rest of her life from the government unless she has no other option. So I will now tell you my story:
I was diagnosed with SZ when I was 22. Years later my own mother called what happened to me a "heartbreak," that was her own word she used to describe it. I was hospitalized for three weeks in the fall of 1987. In June 2000, I obtained a Masters in Library and Information Science from Pratt Institute. I've worked in a professional field for over 12 years.
In 1990, I obtained my first job as an administrative assistant and within one year of getting that job I obtained my property and casualty insurance broker's license. I worked in that field seven years before I decided to go back to school.
Read the Interview With Mary Ann Bruni to get an idea of how my own mother experienced what happened to me. It might give you hope or you might recognize a universal feeling when you read the interview.
The number-one takeaway I can give you is that your daughter needs to be doing something productive with her time instead of sitting home watching TV all day. Give her houswork to do around the home, encourage her to get a volunteer job or paid job as she becomes more stable and able to do this.
The last and most important thing I can tell you is that she will need to take some form of SZ medication the rest of her life to have the best chance of the most successful recovery.
I'm 46 years old. I was diagnosed with SZ in 1987. I've taken my medication every day as prescribed for over 19 years and I missed only one dose on the day I had a medical exam. In 1992, I went on a drug holiday that failed and I was a lot worse off than I ever was. From that time, I've taken the medication faithfully.
I would urge you not to settle for less than full inclusion in society for your daughter and I would tell you to be hopeful that she can recover.
Regards,
Christina