Four words you never want to hear: ‘I want to die.’ Or, the other variation, ‘I want to kill myself.’ Living with two children with serious mental illness who were diagnosed very early (age 7/8) who also have pretty constant suicidal ideation is, just frankly, stressful and heartbreaking.
I can remember when my now nineteen-year-old was nine and daily he would say, ‘I want to kill myself.’ It was not dramatic, not accompanied by meltdowns or violence, just a simple statement every day. Casual, almost robotic. I can still hear the litany of therapists, psychiatrists, and psychologists, whose varied takes were: “It’s for attention,” “It’s just a phase”, “He needs to be hospitalized” and “What at home is making him feel like that?” Back then I was still in research mode. I read every book I could find on difficult children, “out-of-the-box” children, books on parenting special kids and finally, books on mental illness. It was a steep learning curve, as nobody really identified with any certainty what was happening. As things grew more complicated and it was clear to me that my son was definitely suffering from psychosis, I began to realize the depth and breadth of our situation. As my son changed from passive suicidal ideation to more active suicidal ideation, our whole world turned upside down.
In the same year, we had to start locking up all of our knives and ‘sharps’. He would pull knives out randomly and hold them up to his neck. He tried to jump out of our moving vehicle. His suicide attempt happened at age thirteen. Now, a second son is repeating a similar pattern. We strive to mitigate his stress each day and help him from becoming too overwhelmed. We are well informed and much savvier with that knowledge, but truthfully, we still battle circumstances every day. This is not a ‘phase’, this is not ‘for attention’. This is an illness. This is something that could end one of our son’s lives.
For us, after my oldest son’s suicide attempt, the hospitalization and medication change to the gold standard for schizophrenia, Clozaril, was a game changer. Although it took months, we saw a huge difference in some aspects of his demeanor and behavior, and in the six years hence have not seen a return to his suicidal ideation while on his medication. We are very fortunate not only that the medication is working for our son, but also that he is medication compliant. While life is still extremely challenging for him and us, it has allowed him to function and even to hold a part-time job and look toward the future.
Our other son, diagnosed bipolar, is still struggling. After being on over fifteen medications, we finally got the approval to try Clozaril for him as well. He stability waxes and wanes. In combination with a medication typically used to treat acne, he seemed to be showing a good deal of improvement, but as he is still young, nearing thirteen, we have seen a lot of breaking through the medication as he grows and changes hormonally. His attendance at a therapeutic day school has been very helpful to our family and him, especially with regard to his stress level. All is not rosy, though, and though he has some success at ‘managing’ himself in a school mostly populated by children with autism and behavioral challenges, he remains an anomaly. His behavior is good at school. He is always on the highest level, level four. The difficulty, as with most kids diagnosed with bipolar is that he spends his day holding himself together, and the meltdowns come at home.
During periods of relative stability, he can be quite successful and have only mild challenges at home. At this time, we are in a period of distinct instability, and his suicidal ideation has returned; he is struggling terribly at home and even a bit at school. His slow ‘integration’ into mainstream school is being walked back, mostly at my insistence. There is no easy answer, there is no perfect situation. The mainstream school offers little to virtually no support for him. The therapeutic school population is not quite a right fit. I am a veteran homeschooler, and I homeschooled my oldest two to high school, but that option has never been a fit for this particular child. So, I mitigate and I advocate. I spend an inordinate amount of time in research, coordination of resources and advocacy. I use our past experience and build off of it in the most effective way possible.
Much of the time, I feel like a failure. Suffering from major depression and anxiety myself, I come to parenting with a completely different set of skills and challenges. I feel I bear a unique understanding and empathy at times to the plight of these boys, but they are also a trigger to my own difficulties. Thrown into the mix are two neuro-typical children. They have witnessed and experienced a lot more than many children their age, living with two siblings with mental illness. Our life collectively is spent entangled in making sure there are no major setbacks and just trying to get through. We have as much fun as we can. Finances are bleak and extremely challenging with our family having one income, but it has allowed me to be a caretaker of our boys.
If I am honest, there is only one upside to being in this situation. Literally just one. Through this immense challenge, I have been able to connect with people and use our experience/story to help others. I have connected with desperate parents trying to help their children and have been able to offer some resources, support, and guidance. This challenge is so isolating, difficult and unfair, but my children, as well as others I know, are among the bravest I have seen, battling daily to beat their mind and still be very kind and warm human beings. They are remarkable, courageous and deserve so much respect. I am hopeful that at some point the world will recognize the bravery of these souls who fight so hard to be themselves and contribute to a world that really doesn’t value them. I hope they always know that someone values them; I do.
Jenifer is a mother of four children, and an advocate for those affected by mental illness.
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