I stir into a slumbered stupor at 3AM. The sounds of human needs ring out in the next room. I try to assemble myself to respond. Try to overcome the cloud of exhaustion and focus on where my feet hit the floor. One of my little girl’s is in her crib in the nursery and her pacifier has fallen outside of the cage I placed her in. She cannot reach it but she needs it to calm herself - to find peace, complacency and comfort. I stumble down the hallway. I do the best I can. I get her the pacifier. I have been biologically engineered to help her - to respond to her cries and try to find a solution. I pat her on the back a few times. I wish I could do better, but I’m tired. I wish I could cradle her and sing to her all night, but I just don’t have the resources. And sometimes it takes me much longer than I’d like to fulfill her needs.
If you have a child with special needs, this story often becomes a metaphor for how you get help in the beginning.
There are government programs that are designed to help children with special needs and their parents. These programs were designed to provide aide and assistance and were born out of true altruism, but they are resource and budget constrained. They often simply cannot help your child to the extent that help is needed. They can’t help you either. They become that stumbling, uncoordinated and exhausted resource that means well and will genuinely try to help - but the effort won’t be fast or pretty. Ultimately, government programs seem to slow down progress of special needs children, from my experience thus far. They just aren’t fast enough. They leave you waiting and guessing and worrying too damn much. They leave your child lying on the floor, still and silent, as you Google about and try to figure out what to do.
When we first learned about Juniper's condition, the patient representatives at the hospital introduced us to a government program was intended to provide us with everything we needed for Juniper. So we signed up and waited. And waited. And waited. And June didn’t progress much. In the beginning, the program became a pacifier in itself, for Coley and I - it gave us a 'perception' of peace, complacency and comfort about June's needs getting met. It kept us still and quiet, as we assumed they were handling everything.
Time passed. Weeks. Months. Then, one day, Coley and I decided we needed more help, more quickly. It was taking too long for the program to respond to June’s needs. They were stumbling about, disoriented and ineffective. A version of me, exhausted at 3AM looking in dark crannies for tiny plastic nipples without glasses.
We all have our pacifiers in life. We need them. They help us get by. But we also need to know when it’s time to let them go and do things on our own. Because letting go of all of our crutches and pacifiers help us to step forward and speak up for ourselves and for one another.
We sought out private therapies for Juniper. Since then, we have found a physical therapist that took June from lying flat on her back with severe torticollis and plagiocepholy to sitting independently and holding a crawl position for several minutes - in just six months. This was not the pacifier we had been used to - it was a restful nights sleep.
If you live in Atlanta and you are looking for physical therapy, look to Sunshine Pediatric Therapy. Katie Roberson has pushed June’s heart into her arms and legs. She’s helped June find parts of herself that we had previously struggled to help her find. She’s helped open up June’s world. And I’m grateful to her for that.
What greatly frustrates me about all of this is that many families do not have the financial means to seek out private therapies. I worry about their little ones, lying flat on their backs with severe torticollis and plagiocepholy. I worry about them growing up and suffering the long term consequences of these kinds of conditions, as they go unaddressed.
This isn’t about medical intervention. It’s not altering who these children are. It sure as hell shouldn’t be about money or status. It’s about giving each living being the best possible life. It’s about people helping people. It’s simple. Let’s just help each other. These government programs are pacifiers. Politics are pacifiers. Perhaps we all need to let go of our pacifiers and grow up.
After all, we’ll all sleep better at night.