When It Isn’t Working: The Overwhelming Crush of Raising a Mentally Ill Child
Twelve isn’t an easy age. I remember it well. That feeling of being in the wrong skin, of your expanding consciousness, of the weight of impending adulthood and big, important choices, coming just around the bend.
But I wasn’t austistic. Nor did I have a host of other diagnoses. Nor had I been hospitalized.
We have been through a great deal with our son. We’ve had just about every intervention you can imagine at this point. He even had a stint at the incredible Wright School in Durham, NC. We had hoped that after that intense, pesonalized, compassionate care, he could make it work at his private school — a fantastic institution that is built for kids like Liam, who often fall into the “black hole” of care by needing support but being high-functioning.
Now, though, it’s become clear that this isn’t working.
Those are really hard words for me to write. I’m writing because it’s how I order my brain, how I figure the world out. Yet, as I’m putting these words to the word processor, I can’t figure it out.
I do know that I felt a turning point, as a mother, about a month ago. I was keeping calm, it was just another day in dealing with inflexibility, fragility, and a lack of resilence. Except now, my son is 5'5" and 150 pounds. I can’t put him in holds.
He is screaming, crying, knocking things over. He’s poured food on his head. He’s threatened to kill himself. He’s not himself, the calm version of him when he’s with dogs or little kids. But that version of him is around less and less. We’ve been working for years on the right medications, the therapy, and conversations, the solutions.
It’s not working.
Every day is a dance of text messages and emails between teachers and doctors. Every day is a razor’s edge of what is going to set him off, what is going to send him spiraling, and what will qualify as a hospital visit (in our case it’s not being safe with yourself or others).
We’re currently looking into wilderness therapy, which comes at an astronomical price (about $30K for 10 weeks). We are looking into state-funded residential facilities, private facilities, and anything else that could help us. Financially, it’s a huge burden (he’s been in private school for four years), but where is the line? When is it too much? When is it not enough?
I have trouble falling asleep at night, worrying about his safety. He has locks on his windows. We have hidden all the knives.
I have trouble falling asleep at night, worrying about my daughter’s safety. She sleeps in our room. And that’s fine for now.
I have trouble falling asleep at night, worrying about our future. The toll that this has taken on our family, the fear that we can’t protect him forever.
We want happy endings. We want that right drug and the right therapy. We want that teacher that can get through to him, that combination of love and support that will make an impact.
Right now, I am just painfully aware that Liam is just one among millions. In our state, North Carolina, the mental health system and insurance system is in shambles. The ER is still the main point of entry for kids like Liam to get help. But remember last time? Liam came back with toxic levels of depakote in his system and so drugged out he could do nothing but sleep for a week. If Liam had Medicaid, or qualified, he could have access to more services — but he doesn’t. I’ve put him on a waitlist for services through the NC Autism Society, but the waitlist for most of them are well over a year.
The system is broken. I think of our family — we are well to do, well-educated, and have an amazing support system. And still this is not working for us. What about the families that don’t have what we do?
But we are broken, too. We are exhausted. And the saddest part of all of this? Liam is not happy. He’s never happy. Even when everything is his way, his brain lies to him and makes him upset. He finds fault in everything. He cannot relax, cannot get a break from the pathways in his head. Puberty is hard for just about everyone, but for him it’s a living nightmare.
I don’t know what the answer is. We keep moving forward. We grab respite in the space between breaths. We hold on to the bit of hope we have left when we’re not too tired to take another step.
I wish this was a happier post. But I think there’s power in the fact that it isn’t. Because so many moms and dads out there, so many families, are in the same space, and we feel so completely alienated. Listening to friends complaining about their “overscheduled kids” (who were put in that place by their parents and have the capacity to even sit through extracurriculars), or their “impossible” teens who talk on the phone all the time, or people suggesting essential oils and massage to cure autism.
It is a lot.
But we are not alone.
We don’t have answers. We only have a glimmer of hope. But maybe, just maybe, if we work together, we can change the system. It may not be in time for our children. It may not be in time to heal the wounds of today and yesterday. But I have to believe that if we go forward and keep telling our stories, keep beating the drum, that eventually those reverberations will be the beat of the sound of revolution.
