When Carter really falls apart and the day is violent and frightening, I feel like I might never sleep again. I’m upset in my hair and toenails and skin. He’s asleep now, but his sleep is different after a bad day than after a good day. He moans and cries, rolls around, and breathes fast and shallow. When he’s calm, he’s almost always asleep within 30 minutes of taking his evening meds. On a bad evening (like this one), it takes him 2-3 hours to fall asleep, and sometimes much, much longer.
They’re like a board to the face, nights like tonight.
The infant/toddler/preschool years were brutally difficult, but there was a golden age. Not long before he started kindergarten, we landed in the office of a developmental pediatrician who was our savior for a time. He prescribed some meds and Carter stabilized, got more comfortable and more functional than we had even imagined possible. In kindergarten, he struggled academically, but did well socially and was basically happy at school. His weight was very low and his cyclic vomiting syndrome was at its peak, but considering where he’d come from, those were just things we had to manage. We thought, “Wow! Just ADHD and anxiety! We can manage this; a little medication, an IEP, some therapy and he’ll probably be fine. FINE!”
We held him back in kindergarten for a second year. That second year went well until winter. Fine for him, anyway; I was busy doing battle with the school to get appropriate placements and accommodations, but he didn’t know any of that. He rarely cried in the morning.
But then it all began to unravel, and the unraveling has been happening for a year. Our lives have begun to contract markedly. We don’t get to church often, both because we’re afraid Carter will become aggressive or because we’re just plain overwhelmed and exhausted and want to stay home. I quit my job. Jacob and Abbie have moved out and gone to live with their dad (which is a much more complicated story than that, but the difficulties of living with Carter play a part), and Spencer is becoming reticent to be here, too. I don’t blame him; if I had some way to escape when Carter starts cussing and screaming, I’m sure I’d take it. We may face re-homing our dogs at some point because Carter punches and kicks at them when he’s in a rage. We always put them in their crates as fast as we can when he starts that, and they’re extremely patient, but we worry that one of them will finally decide enough is enough and hurt Carter. Brian and I almost never have time alone together; we can’t leave Carter with people who don’t know how to manage his behaviors, and the behaviors increase when he’s separated from me.
Does it sound like I’m complaining? It’s only because I am.
Since I’m on a roll, howsabout the money issue? I quit my job in September because Carter was in crisis. I started that job during our family’s golden age, when we thought we were on our way up and out. Having that second income was a huge relief; there was enough money to breathe. We could pay the bills and buy the groceries and there was even enough money left over to go to the movies, buy cell phones, and we even had hopes of someday taking a little vacation. No more. If it wasn’t for my family’s generosity (they pay our mortgage), I don’t know how we would even survive. I don’t want to get sidetracked into a discussion about the US healthcare system, so I’ll try to hold back. Last year, we spent 23% of Brian’s gross salary on healthcare: premiums, deductible, co-pays, and various out-of-pocked expenses. Our income is too high for Carter to be eligible for SSI payments. Carter’s disabilities fall outside the criteria for the DD waiver (which gives children with certain disabilities Medicaid coverage regardless of family income), and why is that? Because his IQ is 6 points too high. Yes, really. Without a DD waiver, we can’t get respite care. So we have enough money, but barely. When Carter had to have dental surgery last summer, our out-of-pocket cost was $2000. We paid it off before it went to collections by getting behind on our student loans. The student loan people are more forgiving then the medical/dental people.
So where does this leave us, besides despondent and discouraged? I don’t exactly know. We keep learning the same lesson over and over again: things aren’t going to get easy. Our primary goal is to help Carter get comfortable and give him the most normal childhood possible. This is too big a job for us to do alone, but that seems to be almost what we have to do. There are 30 minutes with the psychiatrist once a month, 50 minutes with the therapist once a week, a little OT, a visit with a behavior specialist now and again. Whether or not that should be enough, it’s obviously not. The hospital is this specter hanging over us, the mystery to which we will have to surrender when a day comes that we can’t keep Carter safe here at home. In the meantime, our lives shrink.