I first began worrying about Neverland in 2009. Caleb was 13, still making progress, but it was becoming clearer that he would never be independent. I vacillated between the idea of him living with me forever or living in a residential home with others like him. It’s a mental battle I like to call the sleep thief.
My past life, before I left my ex-husband, was pretty opulent. On that night in 2009, I was in a limo, riding to a lovely restaurant with the wife of one of his employees
She was complaining about into which of several schools her two middle-school athlete sons might gain acceptance. Which college, that is.
Even though my ex had whined at me innumerable times to avoid this topic, I said, “My only problem is that one child will leave for college and one never will.”
What followed was the silence of a bleached-blonde (actually, no prejudice against that one), gel-nailed, spray-tanned, four-hours-every-day-in-the-gym content woman. I wouldn’t trade Caleb or Sophie for anything, but I did wonder what life would be like if it was like hers.
Pink flushed down her face to her neck, and she replied, “Uh, um, I never thought of that.” She then looked out the window at the tapestry of Tampa traffic for the next half-hour.
Caleb has loved Peter Pan since before he could walk. It honestly wasn’t until our 86th time on the Peter Pan ride at Disney World (I already mentioned the opulent lifestyle, right?) that I realized that my son was Peter Pan. He would never, ever grow up. There are so many blessings for him in that world, but so many trials for me.
My Sophie graduated high school with honors. She graduated college with honors. She’s now in a super competitive graduate school program. She flew out of the nest and made a strong, loving, independent life with her darling husband. She’s done all of this on her own. She gives me the great privilege of being her mom, a gift which is not lost on me.
Caleb graduated high school in May, standard fare for a 21 year-old in our state. I was lost, not knowing the next step, until an incredibly attentive friend told me about a day program. I am a support parent for the entire state. I have advocated for countless families for a few decades. But even I didn’t know about this particular program.
Caleb started in July—it’s fabulous. The age ranges are from 21 to 70s and beyond. He goes out into the community for park visits, movies, outreach events, everything you can imagine. He wakes up every morning extremely happy to meet the day.
It’s enough for him. But not enough for me.
So I began a new journey.
For the past six months I have been navigating the horrid, unthinkable, soul-crushing, heart-stopping world of finding a residential home for Caleb. The requirement in my state is that I prove I am physically unable to care for him. On regular visits to three of the specialists who treat me for various ailments, I asked them to write letters stating my health conditions and how they affect my ability to care for Caleb.
The three letters I received listed 18 serious and degenerative conditions. I knew I wasn’t doing well, but I was shocked. If you passed me on the street, I would look like a normal healthy 49 year-old.
Inside, I am rotten, crumbling and more ill than I knew. Genetics? Maybe. Habits? Definitely not. Stress? No question in the world.
I’m not going to list the conditions here but several will cripple me and a few will eventually kill me.
And then what of Caleb? Do I want him rushed into a residential placement in an emergency situation? Hell no. I want to help find him a great place and decorate his room with either what he already has, so he feels comfort, or all new things, so he feels excitement.
Caleb is ferociously attached to me, as I am to him. This break will fully shatter us both.
My goal, therefore, has been to ease him through this. To assist in the process and stay a very active part of his life.
To that end, I gathered up paperwork, met with caseworkers, wrote an excruciating letter about not being able to care for my child. It was reviewed by an entire board.
And they had more questions.
DDSN workers came to my home for “additional questions.” This doesn’t always happen. I questioned and questioned and questioned but was told it was necessary.
The day of the visit, I looked like I normally do. Rachel from Friends top-knot. Clean face but no makeup. Clean clothes but not fancy.
But I failed in a way I hadn’t considered. The house was immaculate. I will tell you, I could have stage 4 cancer and my home would be immaculate. It’s what my family does, no matter the pain or fatigue it causes. Maybe it’s pride, maybe it’s comfort but it’s what we do. Unfortunately, it made me seem to be healthier and stronger than I am.
After the visit, I received a letter stating that Caleb’s application was denied. The reason listed was “other.” I begged for an answer more specific but was told that I have enough support to care for Caleb. I wouldn’t have begun the process if that were remotely true.
So, all of you out there in Neverland, I share this so you know this can happen. Now I must appeal. After more than two decades of fighting for proper supports, school placement, classroom placement, for doctors to listen to me when I know something is wrong, I am sapped.
Why does everything have to be a fight?
I am by nature a peacemaker. I want the world to be happy and fair and kind and accepting of everyone. But this life with Caleb has made me a street fighter; a completely reluctant pacifist street fighter, but one who can throw a heck of a punch.
At six months old I noticed a hole in the crack of Caleb’s bottom. I scheduled an MRI. The day before, with no confirmation call I telephoned to inquire.
“Ma’am, you must not have completed the registration. There is no appointment for your son.”
Adrenaline flooded through me. I had been waiting weeks to see if this terrifying hole was actually a tethered spinal cord. I hadn’t slept. Or breathed.
For the second time in my life, God’s words took the place of my own. I surely could not have conjured the following sentence:
“I don’t know if you have children and if you do, I pray they don’t have special needs, but if they do, I hope that people are kinder to you than you are being to me right now.”
I heard a quiet intake of breath, then a softened voice, “You’re right. I’m so sorry. We can see Caleb next Tuesday at 10:00.”
It ended up being something called a sacral dimple, just a hole. But the process of getting the diagnosis depleted every ounce of energy I had. I scooped up what was left to take care of my two babies, leaving nothing left for me.
Flash-forward 22 years, and you can almost physically see the state of my mind and body. Exhaustion is the slurry at the edge of a dry pond.
After reading the denial letter several times, I spent eight hours on my couch yesterday. Alternating between bent-over sobbing and binge-watching shows that take me to another reality, I gave myself over to the grief. I didn’t used to do this. I used to shove it down, let it fester, take root and then drag my soul to the depths of a dark, gloppy sea for months, years at a time.
I’m smarter now. I gave into it, stared into the abyss and frightened it away. After a nap and a shower, I had shaken the grief off like so many fall leaves.
Today was to be our final visit with Caleb’s developmental pediatrician. We’ve lost all of the pediatric specialists but this one would be a slice on a papercut. I went to shower and put on the mask of false happiness. But when I walked into the bathroom, I said, to the tile floor, “fuck it.”
I picked through the dirty laundry to find the clothes I’d worn the day before. I layered a black sweater over a black wrinkled t-shirt. I twisted my dirty hair into a sad replica of a Rachel top knot. I left the darkened shadows under my eyes untouched. I used no mascara or blush. I wore no earrings. I looked at myself and said, “Well, it is what it is.”
Still, being my parents’ daughter, I walked tall. I made sure that Caleb was freshly shaved, his body and hair properly washed and even applied that bit of gel that keeps his cowlick in place. He was dressed in new, clean clothes that smell like summer. He wore new Adidas sneakers that my extraordinarily kind boyfriend bought him.
We have seen this wonderful doctor since Caleb was two. She walked into the room, took a second look at me and said, “What’s going on?”
Then, “You’re exhausted.”
I told her everything I’ve just told you. She was as confused as me about the denial. She asked to see Caleb one more time and to get him in with some specialists who may help. Her social worker called and offered her help. They are the pixie dust with which Caleb and I have been blessedly sprinkled so many times in 22 years.
Today I begin the appeals process. I will have to scrape energy from long-foraged and scraped cells and do my best for my son once again.
It’s what you do when you are about to land in Neverland.
Photo credit: scrooge-mcduck.wikia.com
Wow, I thoroughly enjoyed reading this article! It gave the readers an indept look into the struggles that most parents, who’ve been parenting a child/children who has/have many challenges throughout life. You are indeed your child’s advocate, if you are in this parent’s driving seat. As an educator I’m on the other side of the coin and can have a different perspective. Kudos to the writer for giving us the big picture.
I know how you feel, what it’s like. My 25 year old with special needs is homeless and I am unable to care for him as he needs. I have my own list, as long as my arm, of my own health issues, I don’t have a supportive community and his father is unable or unwilling to help. My son needs his own space, but I don’t know where to turn. My head buzzes like laundry in the spin cycle and I long, long, for sleep.