When your child is diagnosed with a schizophrenia spectrum disorder
It’s understandable if your emotions are on high and if fear is flooding through your veins. Schizophrenia and schizoaffective disorder are scary words. You might be wondering what this means for your child’s life. Will they be able to live independently? Will they be happy? As much as I wish that I could, I can’t answer those questions for you, but here’s what I know. Not only has your child’s life changed forever, but yours has too. Whether your child is young or an adult, it’s going to be a complicated road full of obstacles in treatment, education, work, and even just daily life, but no matter how bleak the road looks now, don’t give up hope.
Your child might keep things from you.
You may not always know what’s going on in their head, and that can be frightening. You may wonder if there are voices telling them things, if paranoia is washing over their mind, if their thoughts are making sense, or any other symptom associated with the spectrum. It can be hard for us to talk about what’s going on in our heads. This could be because of fear or stigma, but also because there are times where there is no way to describe it. Even with a high level of insight, it can be difficult to put experiences into words. And the stigma around the disease is so powerful that opening up, even to a doctor or parent, can be absolutely terrifying no matter how supportive they are. At other times your child’s disease may be telling them that nothing is wrong at all.
You may not always know how to support them and that’s okay.
It’s uncommon for a parent to start this journey knowing exactly how to support a child with a schizophrenia spectrum disorder. It can be difficult to put yourself in your child’s shoes. And you will never know exactly what they’re going through. But by educating yourself on the disease through research, talking with other parents, and reading stories from those who share the diagnosis, you can better understand. And understanding may help you feel better equipped to support your child through this disease.
Never give up on your child, no matter how grave the prognosis may be.
Advocate for your child endlessly. If they are in a position to advocate for themselves, be right behind them and help raise up their voice without talking over them. And if they are not in a place where they can advocate for themselves, never stop fighting for their best interests. Everyone with schizophrenia spectrum disorders deserves a good quality of life, no matter what society or the medical community may say.
Remind them that you love them and are there for them even when they close themselves off. When schizophrenia and schizoaffective disorder lure your child inside of themselves, caging them in their own mind, never stop telling them how much you care. Even when you think they can’t hear it, keep telling them. There may be times where they are unable to understand it. But it can also mean a great deal to them, even if they can’t voice it.
Take things day by day.
Things may get worse before improvement is possible. There will be bad days, sometimes more than good days. But when your hope for a brighter future feels like it’s flickering out, focus on what’s happening right now. Take everything day by day, even hour by hour when necessary. Fear of what the future will bring may be overwhelming at times. But guide your focus towards tomorrow. Hold out hope that tomorrow will be better than today.
My parents didn’t know what to do either.
This is something that no one is ever prepared for. I know that my parents went through fear and denial like any other parent might. They feared for my future and felt at a loss at times. But they were always there for me. I remember my mom sitting next to me on the couch in my doctor’s office, holding my hand as my doctor gave the diagnosis. It seemed like the word schizophrenia was hanging in the air like smoke.
If I needed to talk, my parents were there, even when they didn’t know what to say. If I didn’t feel like I could talk, they still sat with me. They were sensitive to my feelings about my diagnosis and, while they did whatever they could to make maintaining my treatment easy, they tried to maintain some level of normalcy in day to day life. It made me feel like a human being whose life wasn’t over, not just a patient. But I always knew that if I faltered on this path, they were right there waiting to catch me and do whatever they could to get me back on my feet.
It’s okay if this is hard on you and it’s okay if you feel helpless sometimes, but never give up hope.
This is a difficult journey to walk. You may feel alone in this, but I promise you aren’t. There are other parents like mine out there who have gone through this or are still going through it. Seek out others who understand both your child and yourself. Remember to take care of yourself as well. But above all, remember to hold onto hope. Even if it feels like the world is giving up on your child, your support is vital.
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