My son was 8 years old the first time a doctor told me he had a psychotic illness. My stunned reaction and the look of confusion on my face prompted the doctor to ask, “Do you know what psychotic means?”
Yes, I knew the meaning of the word psychotic, but I could not imagine it describing my son. I knew him as wildly imaginative, dark and moody, prone to violent temper tantrums, unrealistically fearful and overly attached to me, but psychotic? No way. The doctor went on to explain his clinical findings and advised a complete neurological evaluation to rule out possible medical explanations. If no neurological issues were identified, I was advised to contact a psychiatrist so that my son could begin taking anti-psychotic medications, as soon as possible. That was quite an afternoon; it marked the end of our “normal” life, and the beginning of a journey my son, Matthew, and I are still traveling.
After the initial shock of hearing the diagnosis of psychosis my first reaction was denial. The doctor must be wrong. Then as reality began to come into focus, I experienced the full range of emotions most often associated with grief including: anger, depression and a sense of loss. Finally, I came to an acceptance of my son’s mental illness and began learning all that I could about the disease, treatments, resources and support networks. I became determined to become an effective advocate for my child.
As a parent of someone with schizophrenia, I realized what an important role I played in my son’s wellbeing. If you love someone with a mental illness, you too may be the only person standing in the gap between them and homelessness, jail, abuse or suicide. At times, you may need to be their voice when they cannot speak for themselves or no one listens. Or, you may need to do the leg work involved in locating mental health services and building a support network. At others, you may need to make tough, difficult decisions that break your heart; but, if not you, who?
Being proactive in your advocacy is the best course of action. Hope for the best, but be prepared for the worst. Contact your NAMI Affiliate or State Organization for information, support groups and referrals to local services. Line up a trusted group of professionals: a psychiatrist, therapist, and social worker/case manager. Become familiar with your community mental health center or clinics. Apply for disability assistance, either Supplemental Security Income or Social Security Disability Income (SSI or SSDI) which will make it possible to access Medicaid or Medicare. Learn about supported housing and employment options. There is help available, but resources are limited. Being patient, but persistent with mental health professionals and service providers gets the best results. However, it you believe your loved one is being abused, falsely accused, or discriminated against a lawyer may need to represent their rights. Overtime, Matthew and I have needed to rely on all these resources.
It has been twenty years since Matthew and I began this journey. He is living with schizophrenia, and I am his mom. Schizophrenia has affected every aspect of his life, but it does not define him. Have courage, there is hope.
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