Child care isn’t easy for parents of children with complex needs. It’s hard to find people who are willing and able to help.
One of many blessings as your children get older is being able to leave them home alone or have an older child babysit the younger ones. It’s a kind of parenting rite of passage to finally feel the freedom of leaving the house without having to hire a babysitter.
As a parent of a child with complex medical and psychiatric needs, that’s another rite of passage we’re skipping. We have a smart, responsible 18 year old daughter, and yet I cannot leave her alone with our youngest son for more than a very short time. Between his medications, medical procedures and behavioral issues, he needs highly qualified adult supervision. In fact, besides my husband and myself, we have my mom, a retired RN, who can give his meds and procedures, and one friend who occasionally cares for him during times when he won’t need meds or procedures.
In other words, we’re stuck, and there’s no end in sight.
It’s not that we’re helicopter parents, though if we were it would be understandable with dozens of hospitalizations, daily medical care required and a lengthy list of medicines. But that isn’t even the case. We would love to relinquish control for a few hours, if only we could find more people who were willing and able. But the people who might be able are qualified professionals who come at a professional rate of pay, and since I can’t work outside of the home because I can’t find affordable child care, we are living on a single income and aren’t able to afford child care for a night out. Ironic isn’t it?
Even when my husband or mom is caring for our son, I never get a true break. No matter how thorough my notes are, and how many potential complications I try to prepare them for, there’s a certain amount of knowledge that is contained only in my mind. I can wrack my brain, trying to ensure that no questions are left unanswered, but it seems like a few always arise. Thus, no matter what kind of break I try to get, I never put down my cell phone, and am always, always always on call. And then there’s the fact that my son cannot express his needs very well, that he is more vulnerable to abuse because he is unable to report an abuser, and the idea of leaving him with someone who is not 100% trustworthy is terrifying.
Many families with medically or developmentally complex children quietly live this way every day. No matter how we wrack our brains, we find no solutions. I’ve been told that there must be charities or churches that could help, but the programs I have found are few and far between, offering little help to remedy the predicament. I believe that the answer must be found in government social programs, but many states are slow to recognize the need, let alone offer support. Until the day when respite care is recognized as a need for complex families, those of us waiting will continue to scan the horizon for those who might step into the gap for us. And to those who do, we give our undying gratitude.
Child Care Resources for Children with Complex Medical Needs: