Everything You’ve Ever Wanted is on the Other Side of Fear

Right off the bat, let’s quickly attribute that quote to George Addair. I’ve found plenty of proof that he said that, but I can’t find anything else about the man. His quote, however, changed my life.

Fifty-two days ago, I placed my sweet, vulnerable, darling Caleb into a residential home. Fear of that act has siphoned my life force for the past decade. But more on that later.

Fear has been a constant companion in my life. As a little girl, I feared the dark and Hamburgler-like robbers who might sneak in during the night.

We would go on to have our apartment broken into and the one car in our family stolen, so those fears grew long, invasive roots like a willow tree. Many storms would come and invade otherwise normal days, sending those roots further into the soil of my psyche.

As an adult, my fears became more esoteric. Fear of failing, fear of success, fear of saying or doing the wrong thing, fear of reacting too strongly. Feminism was rampant by 1985, but it had not yet perched in my soul.

Mostly I feared confrontation. I would simply stop talking to a friend rather than have a conversation. If I received a bad grade for a project, I would write a letter to the teacher. During one history presentation, I videotaped it rather than perform my speech in front of the class—I was afraid of that teacher, who, two years later, would go to prison for attacking a student.

Confrontation, in my mind had two speeds: 1 or 100 MPH. One MPH was complete avoidance, which leads to self-hatred and an awful pit in my stomach. 100 MPH is screaming at the subject, like that out-of-control father in Twisted Sister’s We’re Not Gonna Take It video.

My life would be a series of conflict-avoidance scenarios. I won’t list them here but the most egregious was that I was raped, after two sips of a drink at a fraternity party, in 1987, when I was 17 years old. I am deadly serious when I tell you I didn’t report him for fear of his reputation being sullied. I also knew viscerally that at that point in time, I would be blamed.

Another trespass on my soul was having my college honors thesis denied by a female professor because she claimed it was written with a traditional woman’s point of view. My interpretation of feminism means we support all women in their beliefs, but my university did not share this view and I was denied that honor at graduation.

Three years later, pregnant with my second child, I didn’t feel any fear, certainly nothing like I had felt when I had my daughter Sophie 17 months before. Throughout Caleb’s pregnancy I felt peace and content.

When he was born at midnight and taken by noon from Princeton, NJ to Philadelphia, PA, I still felt no fear. When a cardiologist called the hospital later that night and told me that Caleb seemed to have a condition called DiGeorge Syndrome (now called 22Q Deletion Syndrome), I felt no fear for me, only for that tiny baby who was now so far away from me, awaiting open-heart surgery. I was soaking in worry, but not fear.

Six weeks later, after a grueling recovery for both of us, my little family was transferred from New Jersey to Buffalo, New York. I received a bill from the Children’s Hospital of Philadelphia in the amount of $144,000 for Caleb’s surgery and hospital stay.

I knew I had to call immediately, but I couldn’t let my babies out of my sight for any length of time so I sat at the kitchen table, preparing my confrontation. Raising my voice would frighten Caleb and his 18 month-old sister so I took a few deep breaths. My hands shook a bit as I dialed the hospital.

The woman on the other line verified the bill.

“But we have insurance,” I said calmly.

“Yes,” she said disdainfully, “but you didn’t pre-register your son so it won’t go through insurance.”

“So after missing my baby for four days and leaving against medical advice, you’re telling me that before rushing to see my baby, I was supposed to stop by and register him?”

“That’s exactly what I’m telling you,” she huffed. “It’s procedure. Now, can you pay all at once or—“

“Is this the number you wanted?”

Silence.

“You see, ma’am, the first thing I did when I arrived at your hospital was pre-register my son. We’re done here, right?”

That bill ended up being paid in full. After I hung up, a peace settled about my chest. I had just had my first confrontation without yelling. I was a little drunk with power. If only I had known how many peace-stealing confrontations were headed my way.

Two months later, I called another hospital because I hadn’t received a confirmation call from the MRI department for the next day’s appointment.

“We have no Caleb on the schedule today or on any day. You must have done something wrong.”

My heart raced, my throat completely dried out and tears threatened to shoot straight out of my eyes.

“But… but, there is a hole in the crack of his bottom and they told me it could be a tethered spinal cord, which would need immediate medical attention. You have to see him.”

“I could try to schedule him now, but our next appointment is 8 months out.”

I went numb. I looked at that little boy who had already had open-heart surgery, four missed spinal taps and a balloon catheterization. Failure was out of the question.

I believe God spoke for me now, because there is no way, in that moment that I could have responded with: “Ma’am, I don’t know if you have children, but if you do, I pray they are healthy. If they have special needs like my son, I pray that people will be kinder to you than you are being to me right now.”

“I’m so sorry,” she said, and I believed her. “Let me see what I can do.”

For the test, she had to coordinate the test, anesthesiologists and a cardiologist, but she made it happen two days later. Caleb would eventually be diagnosed with midline failure to close, but his spine, for that time, was healthy.

Fear had made confrontation something ugly and angry in my mind. It had made confrontation something in which neither would be happy, with no growth or understanding. In learning to face fear, I was learning to change the face of confrontation and it would change my life and my children’s lives completely.

The rape and the damaged girl it left behind in tatters would lead to an abusive 19-year marriage, from which I eventually fled, calling upon all of my fear of confrontation. Sure, I was scarred and hobbling, but I had my teenage babies with me. I left like many abused wives, under the watch of a skilled therapist. We slipped out quietly while he was out of town, taking only our clothes and the computer which held all of my writing.

I conquered the fear of being a single mom—I learned that I had lived that role for almost two decades and that fear was baseless.

There would be other fear and fights along the way: fights for inclusion, therapies, proper class placement, medical tests and treatments. When Caleb turned 21, I had to fight to find doctors and dentists who were willing to take him on, since the pediatric world could no longer see him.

But there was this one fear. You know the kind. The kind, that, as a child, made a sweater in the corner of your room at night look like a monster. As an adult, it’s the kind that slips into a dream and rotates that dream into a nightmare that will wake you, dripping in sweat, afraid of the most gruesome corner of your mind.

This fear was “What will happen to my son, the light and love of my life, if I die? Who on earth could care for him?”

If I dig a little further, that fear descends to knowing that, with this child, I am not leaving him to live a better life than I had. We all want our children to know better than we did. Caleb will have a full life, but a much different one than I dreamed for him.

Caleb’s sister, Sophie, is knee-deep into a PhD program in genetics. She is learning computer coding. She knows more in the first second of her waking than I will know in a month. Sophie will live every parent’s dream—she will live a full, satisfying, rewarding life.

My fear of leaving Caleb exploded on October 2. A traumatic act did occur, but to me, thank the Lord, not Caleb. I went into that confrontation with the courage of an All Star sliding into home plate.

The new placement took a few conversations. I advocated for an immediate change of placement, which used that carefully honed skill of quiet confrontation.

I only realized after everything had happened that my entire life had prepared me for that one phone call.

Caleb, though his calm, sweet, strong disposition taught me to fight for him. He taught me to look fear in the face and walk toward it. Like Dory and Nemo sang, “You can’t go over it, you have to go through it.”

Through careful negotiation, I was able to help him secure housing in the Cadillac of homes in our area, with amazing staff, roommates his own age, and a private bed and bathroom. He still attends the day program he adores. Friends and I believe he is the happiest and most independent we’ve ever seen him.

Fear blocked me from ever seeing that Caleb’s life could be this wonderful. The wise Mr. Addair was right.

I know I have many more fears to confront, but I will use this experience as my exemplar.

So what’s on the other side of your fear?

 

Photo Credit: Dr. Joseph Ivan on Twitter

If Only I Could Send Autism to a Black Hole

I typically try to write positive blogs because I know there are so many people out there who need to hear words of hope.

This one will not be like that. Maybe this one will reach the other people who need to hear another type of blog, one that they can understand and relate to.

Are you ever just bopping along on a typical day, feeling pretty good when something comes along and shatters that feeling like a rock through your bedroom window? You’re left thinking, “Hey, what just happened here? How did we go from there to here?

Today was Mother’s Day. The day we planned was going to be wonderful. My incredibly sweet boyfriend and I would cook and entertain my mom, attempting to show in some miniscule way how much we appreciate her. Caleb knew the plans and was excited about everything. He spent the morning coloring at the kitchen island rather than up in his room, where he chooses to spend much of his time.

My mom came, we had brunch and champagne and it was such fun. She brought a few movies that she wanted to share with us and that was good, too.

Until.

I’ve written that Caleb can’t handle emotional changes in others. I was told years ago that people with autism actually gather too much information in facial emotions and that it’s painful. I live by this credo. I am intentionally blank all the time when I am around him. But sometimes others, no matter how well-intentioned, forget.

That’s what happened today the movie. I don’t even remember the plot but once I felt tears sting at the corner of my eyes, I stifled them, like pouring sand on them to keep them from coming to the surface. My mom, who was loving every second of the movie, welled up, tears covering the entire surface of her eyes, threatening to spill over like a dam into a river.

Caleb, who misses nothing, looked at her. I could feel the anger surge up through him until he turned to me and said, “Shut up, bitch.”

No one has ever spoken to me like this.

I know that if I yell at Caleb, it exacerbates the situation. If I ignore it, he thinks it’s okay. I simply pointed my finger to his room upstairs.

“Sorry, Mom,” he said, with true regret.

“I understand, but you need to go upstairs and calm down.”

“Sorry, Mom,” he said, but now he was standing.

“Upstairs,” I said, pointing.

“I push your face,” he yelled, hitting my pointer finger with such force that it reverberated up my arm and shook my neck, aggravating the two plates and six screws put there four years ago.

My boyfriend told Caleb that he can never hit his mom. My mom sat in her chair in open-mouthed shock.

Rather than engage, I left the room, I went to the back of the house to my bathroom. I leaned on the counter, taking deep breaths and trying and failing to not cry.

I know he doesn’t fully comprehend what he said. But I also know that he knew it was incredibly incendiary. I know he knew it was bad.

In the novel and documentary Life Animated, Ron and Cornelia Suskind exquisitely told the story of their son, Owen Suskind, who was locked in the isolated and isolating world of autism. At age three, autism descended and Owen stopped speaking. But over time, he did begin to talk, using phrases from Disney movies. He was using them appropriately and finally able to communicate with his family. His family adapted and they were overjoyed that they could finally communicate with their son. This young man grew up to be a motivational speaker. It’s a magnificent story.

Caleb also used Disney movie quotes to talk. Years before I ever saw Life Animated, I had adapted my verbiage so that Caleb and I could communicate. Caleb has an innate ability to understand and mimic phrases that he could never string together on his own. He uses them in completely appropriate ways and it opened up a world between us.

I don’t know from where these new, dark, sickening phrases have come. Even though he is 22 years old, I have parental locks on all of his devices. His TV does not have cable. He knows older people at his day program and perhaps he’s picked up on what they say or even movies they watch there. I’m not blaming anyone. He’s 22. But I wouldn’t allow any other 22 year old to speak to me in this way so we will work on it.

Tears gathered in my eyes and I let them fall. I breathed out and breathed in, in an exaggerated pace, trying to calm myself. Those words were an assault, especially compared to the absolutely lovely card he had given me hours before.

Just yesterday, Caleb, my boyfriend and I were out running errands. Almost near home, Caleb asked, “Mother’s Day card?”

My incredible, wonderful, exceedingly kind boyfriend took Caleb to help him pick out a card. He said that Caleb zeroed in on one right away. Key phrases were: “I know you gave me all you could, and that you worked and worried.” Another was: “You had my back, no matter what, I never felt alone. Knowing you were always there made our house a home.”

Could Caleb have read and comprehended that card? I will never stop believing that he did, that he knew exactly what that card communicated.

So what happened in the hours between lauding me as a good mom and him calling me a bitch?

I’m there, leaning on the counter in my bathroom, tears slowly falling, when he showed up at my side.

Seeing the tears in my eyes, Caleb angrily said, “I will punch you in the face.”

“Get out of here,” I said quietly, slowly shutting and locking my bathroom door.

If I could kick autism in the ass and send it screaming into a black hole oh, I would do it in a heartbeat. No regret. Autism resounds like Alzheimer’s, dementia, TBI and other mental disorders. It scrambles the brain. It twists a personality until it looks like a petrified forest. It ruins families and it leaves those affected with minds riddled with disease. It’s horrifically unfair. There are few times that I have hated it more than I do today.

I try to not let this exchange ruin what has been an otherwise happy Mother’s Day. I have my mom here and it has been such fun to spoil her with a gift she loved and food that I know felt like a treat to her. She was the main focus of this day and she told me she had a wonderful one.

For me, Caleb’s actions sucked all of the air out of the day. They left me feeling like a sock puppet without a hand. They left me feeling like all I have done, all I have sacrificed for 22 years, has delineated to this crushing moment. I feel like I have failed, like I forgot an important lesson or missed a crucial teaching moment.

I haven’t, I know. I’ve poured everything I am into this child. This wonderful, vibrant, inquisitive, funny, incredibly intelligent child.

But he’s not a child anymore.

At six feet, two inches and over 240 pounds, Caleb is a man to be reckoned with. It’s so challenging to look at that visage and try to remember that he is mentally about six, though there are parts of him that are age-appropriate. That’s what the three deep breaths in the bathroom were about. I was stepping outside the situation, calming myself and trying to remember how I would have dealt with him or his sister at age five.

I don’t have the answers for this one. I spent yesterday curled under the blanket that used to lie on his little twin bed. It is tattered and worn almost through in spots because I have used it almost every day since he outgrew it. It reminds me of the precious baby I almost lost to open-heart surgery. It reminds me of the chubby baby hands that clapped and giggled while reaching for me. It reminds me of a time where I was blessed with an innocence that saw Caleb’s future in a much different way. I guess it’s my very own super hero cape because it allows me to slip into sweet memories instead of whatever is happening that day.

To all of you out there who have been through something like this, I’m so sorry. I wish I could hug you. To all of you who know and love Caleb, don’t let this change that.

One of the greatest lessons that Caleb has taught me is that each day is a fresh day. He wakes up happy and ready to meet the day, without bringing up whatever sad things happened the day before.

He inspires me to do the same.

 

Photo credit: Springer Nature

Run

This life as Caleb’s mom has honed me into a devout Christian. I am also a firm believer in karma and the law of attraction. I wish I could only attract good, strong, happy things but sometimes negative just attracts more negative.

A few weeks ago I wrote about trying to find a residential placement for my precious Caleb. I threw in a story which mentioned a sacral dimple that he had in 1997, when he was six months old.

Last week, I found another one. A bigger one that was bleeding. Karma, law of attraction or simple coincidence? I’m not going to speculate. I’m too busy learning how to care for this new disease.

For those so inclined to know this rather icky condition, it is a small depression in the crack of one’s bottom.

One has existed for 22 years. I don’t know when this new one formed or when it ruptured. Yesterday, I found the smallest and newest, above the other two.

Special needs moms will understand the fatigue of which I am about to write. The need to press doctors to please do something—send us to a specialist, write a prescription, give me a diagnosis, anything that will help make sense of something new and terrifying.

Last week, after pushing for a quick appointment instead of one in a month, we saw a colon and rectal specialist who diagnosed Caleb with pilonidal disease. Not uncommon but not common. Just like Caleb.

The doctor calmly listed the care for this condition. He listened to every question and patiently answered every one. He told me if Caleb gets a high fever, this condition will likely be the cause and he will need to come in immediately to have it drained and begin a course of strong antibiotics.

He told me to stop using soap on Caleb’s back. To keep the area trimmed of hair. To apply diaper rash ointments or creams because the one that ruptured last week was certainly painful to Caleb who never, ever complains. Once more, I had failed my son because I didn’t know of a struggle he can’t communicate.

Like all of our other wonderful doctors, this doctor doesn’t know that he just added that one extra card that collapses the house.

I hear an echo in the recesses of my exhausted brain. It whirs around like confetti. Isaiah 40:31 But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Papa, it’s so hard and I’m so tired.

My child, I already gave you the words and my promise for this situation: Run the race with perseverance.

But it’s so hard. And I’m so tired.

Run. With perseverance.

But…

Run.

When we arrived home from that appointment, the charging cable for Caleb’s iPad broke. It’s his favorite thing in the world so, already upset from the examination, he became angry and agitated that he couldn’t keep the iPad charged at 100%. OCD can be very cruel to someone who already struggles with so many issues.

While I was ordering a new cable online, his case manager called to tell me that his application for residential placement was denied. Again.

I will never understand why, in our life and everyone else’s, when one thing goes wrong it seems like an invitation for other things to go disturbingly awry as well. Law of attraction?

Papa, it’s so hard and I’m so tired.

I often wake right at 2:00 in the morning. I desperately try, like my mother has taught me, to thank God for all of the good in my life. There is so much, truly. I start, but then my mind starts to wander.

What if, after all of this fighting, Caleb ends up in a place where they are not kind to him? What if they don’t notice a small hole in his back and he becomes really sick? What if he wakes in the middle of the night and has no one to comfort him and try to talk him down from a nightmare?

I hear, in those recesses, words that fight to be heard among the chaos, Psalm 46:10: Be still, and know that I am God.

I don’t doubt these words. I know them and breathe them and feel them in the marrow of my bones. But like Peter, my absolute favorite Saint, I find myself panicking in the Sea of Galilee when the water turns rough. I find myself hyperventilating in the garden at Gethsemane. One minute, I’m cutting off the ear of a guard, the next, denying Jesus’ existence, devoid of the faith that had propped me up so well a few hours ago.

I suppose that’s why it’s called a walk of faith. It’s not a cruise. It’s not a romp. It’s a walk, along a rocky, lonely, painful, and questioning path.

Please don’t misunderstand and think for a moment that I’m not acutely aware that this path is primarily Caleb’s. He is the one who has to withstand physical and emotional pain, misunderstanding and living in a world that makes so much less sense than one he would design for himself. I know.

This morning I was working out at home. A struggle for sure, but I was giving it my best effort. About 35 minutes into a 45 minute DVD, Caleb came down and said, with calmness and deliberation: “I need help with my TV. Please.”

These words are a Herculean effort for my son. He typically expresses his wants and needs with as few syllables as possible.

Because this request was so eloquently stated, I paused my DVD and went upstairs to Caleb’s private retreat.

Somehow, this young man whose true IQ can’t be properly measured had programmed his TV to only communicate in French (which I am fluent in, but couldn’t translate this morning) and to only display in black and white. He was pissed off.

I sat on his bed for 15 minutes trying to figure out how to rectify this situation. I am fairly technologically savvy and fairly fluent in French, despite what I said earlier. It was impossible to untangle this mangled fishnet.

I kept saying, as calmly as I could, with my muscles tightening from warm and ready to go to something resembling concrete, “I am so angry right now, Caleb.”

When I finally fixed the problem, I went to hug him and apologize for being angry. He kept his arms as his sides, like one of those toy soldiers.

“Hands to self,” he said.

Like so many phrases in autism, that one is a triumph and a defeat. It’s a triumph that he could communicate such a complicated phrase instead of just screaming. But it was also a defeat in the heart of a mom who was trying to issue an apology.

I have never, ever questioned why Caleb was given to me. I have always accepted that he was given to me, truly a gift, even if I don’t understand it. There are times I wear my role as his mom as a badge of courage. And there are times I cower on the bathroom floor, mascara running black tracks down my face, my chest heaving with sobs that probably should have been let loose back in 1996. Old sobs hurt as much as new sobs.

At the same time, I have relied on government programs to fortify my incredibly vulnerable son’s life. I worry and then worry some more that if something happens to me, he will be thrust into a life he can’t understand. I am confounded as to why they are fighting us so hard right now to help me secure his future.

There is, of course, another Bible quote to combat this worry fatigue. Matthew 6:25-27: Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life?

I groan, like any child. And I remind myself that my life is just a borrowed gift. So is Caleb’s. This time will fly by in God’s heart like a few moments. And I will understand everything one day.

Then, like gentle rain slipping down new spring leaves, I hear my brother tell me in Matthew 11:28-30: Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.

I slip the other end of my yoke over Jesus’ shoulder. He smiles at me and we begin the first steps of what will be a long run.

Photo credit: Medium.com

Ladies and Gentlemen, We Now Begin Our Initial Descent into Neverland

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

 

Pixie Dust at the DMV

As a special needs mom, give me mean, bitchy people any day. I can respond to hate with hate or simmering rage. But kindness. Kindness undoes me. It strips the strong façade from my face and leaves me a shivering mess. People who say they understand rip me apart. It’s not that I don’t want people to be kind. It’s that I have grown to not expect it. When someone is compassionate or sympathetic it leaves me as vulnerable as a new spring leaf in a thunderstorm.

Few strangers have shown unexpected kindness to Caleb and me. When Caleb was four, a woman was in line behind us at a restaurant. Caleb was stimming and talking in high-pitched echolalia. I felt her looking at him, at us, before I ever turned around. After a few tense moments I pulled courage up through my spine and used it to propel me to meet her gaze. I was expecting a reprimand or a nasty stare. Instead, I was met with watering eyes and a smile full of sadness.

“Hi there,” she said. Caleb beamed.

I don’t remember the rest of the conversation but I do remember that she told me she was a pediatric nurse. She said it in the quietest of whispers, with a tilt of her head that tore into my soul. It took a breath from me.

“So you know?” I asked.

“Yes,” she replied.

From the time Caleb was little I learned to look straight ahead rather than make eye contact with anyone. I’ve written before that staring does no good, no matter the situation. Even if Caleb were a neurotypical child having a tantrum, rude stares, whispers and tsks only make a tough situation much worse.

The problem with not making eye contact is that you can miss the kindness as well as the criticism.

Another time we were shown such radical kindness was on Caleb’s Make a Wish trip in 2014. At 18 Caleb chose his favorite place in the world, Orlando. We had several blissful days at Disney World and then tried our luck at Universal. Caleb has never liked anything faster than the Buzz Lightyear ride, so he and I waited on benches in the shade while Sophie rode the tallest one.

Sophie had just finished her freshman year of college but I still worried over her every second. I was also worried because the day was warming up. One of Caleb’s medical conditions is that he can fatally overheat. At midday, the temperatures were cutting it close for him, even though we were under a fan in shade. I kept looking at the exit for the ride, waiting to see Sophie running toward us, because I knew she would. She knew it was getting too hot for him. She would worry so much about him that she wouldn’t even enjoy the ride.

With my head swiveling between Caleb and the exit, I’m sure it wasn’t hard for anyone who was paying attention to connect my worry dots. Most people don’t. The woman sitting next to me did. As usual, I was avoiding her stare, preoccupying myself with a loose thread on Caleb’s t-shirt.

“I can watch him,” she said, laying a very kind, soft hand on my shoulder.

“What?” I asked, sure I had misunderstood.

“Your son. I can tell you’re worried about your daughter. I’ll keep him safe while you go find her.”

Kindness. It created a lump in my throat that made it hard to speak.

As lovely as she was, there was no way I would have ever left Caleb with anyone I didn’t know. Her offer was so pure that it made me want to hug her, even though that would have been social overkill for the moment and it would have simultaneously set Caleb screaming because I was touching a stranger.

“You are so sweet,” I said. “Thank you, but I know she’ll be along any moment.”

Sophie was. I told her the story. She said, “You didn’t even consider it, did you?”

What would life be like in this often violent, turbulent world if we were met with kindness instead of fear?

People who meet Caleb now, when he’s 21, six-feet-two and 240 pounds see a happy, confident young man. They see a kid who laughs at fart jokes and still loves to color and do preschool word searches. I need to learn to see with their eyes.

Since the day he was born in 1996, when he was taken from me at 12 hours old so he could have open-heart surgery in another state, I have lived in fear. I was learning to let it unravel when he was four months old, when I was recovering from the trauma of caring for a critically ill newborn, when I was told he needed another heart surgery, a balloon catheterization. I slipped the cloak of fear back over my shoulders and that time it sank into my blood, my bones.

There are so many children with worse stories. There are so many parents who have lost their children. None of us can compare stories because our paths are so different. But I bet we all have that plasma of fear running through our bodies.

Kindness is the antithesis of fear. Kindness negates worry and smooths over so much negativity. But fear eats kindness for breakfast and spits the bones out from under the door.

I am trying so hard to extricate the fear from my soul. I feel like I’m always holding a breath, waiting for the next diagnosis or injury or outburst. Months, years can go by with little incident but that soul-sucking fear keeps me constantly barely balanced on a precarious log over a rushing river.

As Caleb nears his high school graduation in a few months, I find myself evaluating his life. Milestones can do that, I know. I’m trying to look back through all of the sadness and extricate the kindness and love that has been there all along. I know it was there. I know it’s my interpretations that have extruded and buried that beauty. Maybe there’s comfort in fear, in expecting the next bad thing, since so many bad things have happened.

After 21 years in Neverland, I have to believe that there was so much more pixie dust and kindness than there ever was cruelty and exclusion.  I know how gratingly cringe-worthy my next paragraphs will be. I apologize in advance.

If you find yourself in Neverland, look for the fairies. Look for the pixie dust. Listen for singing from the forest. In my version, I kick Captain Hook in his nose and walk away.

Now that Captain Hook is out of the way, I borrow his periscope and am astonished to see the scales fall from my eyes as I peer through it. Hook used it because his periscope could see everything. It illuminates Caleb’s past and I fall to my knees seeing all of the kindness that I had chosen to not remember.

There are cashiers at our favorite grocery store who go out of their way to greet Caleb. Untold devoted teachers, therapists, doctors, surgeons who have all given their best to help Caleb be as healthy as he is. There’s a wonderful young woman at the restaurant we visit on Saturdays who brings Caleb word search books, crayons and the dressed-up ducks he is obsessed with. We have amazing friends who brought balloons, cake and favors to Caleb’s birthday party without even being asked. These same friends came over when it was snowing in January because they know how it frightens him. They knew they could make him smile when he was scared.

I began writing this blog on a Sunday night, the day before taking Caleb on a past-due trip to the DMV. I had been dreading the crowds, the stares, forgetting one doctor’s signature on a line so small I couldn’t even see it. Within 30 minutes we were handing over the handicapped parking placard forms to the clerk. I had told myself that morning I would only look for kindness for the entire day.

The clerk smiled at us and Caleb smiled back. Our forms were processed in seconds, and then she told me that his state ID expires in July.

“I know,” I said, in my head groaning already, which is definitely not part of looking for kindness.

“We can renew this right now if you’d like.”

Kindness.

We were sent to the picture station where another clerk took about five pictures of Caleb, trying to get one with his eyes open. We waited a moment and then she handed us the new ID, saying, “Good bye, Caleb. It was nice to meet you.”

People turned to stare at her kindness. Caleb did his happy growl. I swear I felt Tinker Bell swirling around our feet.

You can find kindness and pixie dust anywhere if you look hard enough. Even at the DMV.

 

Photo credit: Timothy Kurek

The Most Important Thing Speechless Gets Right (photo credit ABC)

 

Last fall, ABC launched the sitcom Speechless, the story of a family whose eldest son has cerebral palsy. Fantastic writers and gifted actors bring the marvelous DiMeo family crackling to life in each episode. Most importantly, they hired Micah Fowler to play J.J. Micah actually has cerebral palsy and is playing a character with cerebral palsy. Shocker.

Beyond the spot-on social commentary of how the disabled are often treated, viewers are allowed to peek behind the curtain and see the equally spot-on representation of the impact a disabled child has on the entire family.

I adore that this show chose to focus on the strength of J.J.’s parents’ marriage. Even though the divorce rate for a family with a special needs child is 80%, the real-life couples I’ve met who are in that golden 20% deal with their struggles together, with humor, unwavering support of each other, and a sobering acceptance of their situation, without devaluing the need to seek out everything their family needs.

Some critical reviews of mother Maya DiMeo have denoted that she is shrill and overbearing. She is. Most of us special needs moms didn’t start out that way but by the time our kids are teenagers, we have graduated with honors from the school of Learn How to Bitch Loudly for Your Child. In the pilot Maya uproots the family so they can live in a better school district for J.J. Been there. We do what is required to give our kids the best services available. Maya also brings a healthy dose of giggle-inducing levity by sneaking everyone into a country club for the day or by writing ideas on the walls of their decaying house, which she somehow makes charming.

My personal review of father Jimmy DiMeo (John Ross Bowie) has him falling in a close second to This is Us’ Jack Parsons (Milo Ventimiglia). Both men are completely devoted to their families. They are strong role models who support each person in the family with exactly what they need in that moment. What sets Jimmy apart from Jack is a sadness honed by strength. At the nexus of every special needs family is a crumbling fault line, which is a daily reminder that things didn’t go as planned. Jimmy deftly navigates that line and is there to balance his family and be the bridge they can traverse if needed.

J.J. is a regular young man and he yearns to be treated as one. He is funny and smart and wants to drink beer at high school parties. He has emotions and dreams and he gets hurt as easily as any of us. We suffer with him through the heartbreak of his first crush. As he processes this loss, we see a resignation in his eyes that there will be many more to come. I’m hoping this show will demonstrate to the rest of the world that people like J.J. are able to have relationships.

So often, people have said to me that Caleb must always be so sweet and happy, because he often is and that has been the paintbrush used to whitewash those with disabilities for a very long time. Caleb, like J.J., is human. We have good days and bad days and some days where we just don’t give a crap about anything. So do they.

On the first day of eighth grade, Caleb’s teacher was reciting the classroom rules when Caleb said quietly, “Who cares?” She was appalled, gave him a negative review for the day and wrote me a letter. I couldn’t help but laugh, thinking that I felt the same way in eighth grade. This was a remarkably appropriate reaction, spoken with perfect sentence structure so after telling him not to do this again, I didn’t punish him. This is the side of disability that Speechless is so powerfully showcasing.

Middle sibling Ray DiMeo (Mason Cook) is an accurately portrayed mess of neuroses and a painful need to be super-successful in everything he does. Siblings of those with special needs often place unrealistic expectations on themselves to be the best at everything, trying to offer their parents a child who effortlessly brings home straight As, awards and trophies. These siblings are often at risk for conditions like anorexia, anxiety and depression.

Youngest sibling Dylan (Kyla Kenedy) entered the world as third in line in the DiMeo need tree and she chose to create her own path rather than try to follow either of her brothers. Dylan is a talented athlete. She has a strong vein of sarcasm, eyes that miss nothing, and is able to ignore those who are unkind to her brother; though I’m sure she has a catalog of every offense stuffed under her mattress right next to her nun chucks.

My favorite character is Kenneth (Cedric Yarbrough) who plays J.J.’s aide. We all dream of a person like Kenneth to help our kids. Maya wasn’t comfortable with Kenneth in the beginning but when she saw how kind and respectful Kenneth was when helping J.J. in the bathroom, she nodded and stepped out of the room. It’s difficult to let any child go, but when you are the parent of a vulnerable child, oh, it’s really hard. Speechless has shown a long but lovely journey of Maya’s trust of Kenneth. They have also learned to tolerate each other for J.J.’s sake.

Kenneth sees J.J. as a whole person who needs some assistance. He functions as J.J.’s voice, reading from his speech board to whomever J.J. wishes to speak. J.J. feels that Kenneth brings much-needed social interaction with his fellow students and the two are a glorious team. Speechless has graciously interwoven Kenneth into the fabric of the DiMeo family, which brings me to the point of this blog.

At the root of every child with special needs is family. Without it, none of us could survive. I have been blessed by the most amazing parents, grandparents, aunts, uncles and cousins. Without hesitation, whenever I’ve asked, they have been right by my side. They have babysat for days, held Caleb’s hand at my brother’s wedding so I could dance, sat by him at parties so I could talk to everyone. A million times, they have listened whenever I need to talk or laugh or cry.

My friends and I have talked about how challenging it is for anyone to care for our kids. It’s very difficult to step into routines that to us are subconscious but to others are completely overwhelming. Some of our kids have frightening conditions. Oftentimes, the only souls brave and willing enough to attempt this feat are our family. I have no idea where I would be without these angels of mine, but I know that I would not be upright.

At birth, Caleb was hospitalized for three weeks after open-heart surgery. My mom and dad kept my 17 month-old Sophie for that entire time. I missed Sophie so much that it physically hurt, yet I needed to be at Caleb’s bedside. My mom would bring Sophie to visit and I swear my daughter never looked so happy and content. My mom mothered my baby so I could care for my other baby.

Years later, on last-minute notice, my mom would pick Caleb up from school, even though when he was little and saw her instead of me, he would hit at the air in front of his face because it was a break in his routine. She would go again whenever I asked, a truly brave act considering she walked right by the school principal to retrieve her flailing grandson.

Caleb didn’t understand birthdays until the year he turned seven. At his first-ever party, my friends and I had pizza at a playground and for a blissful 10 minutes, it went great. Then Caleb fell off playground equipment, dragged his face down hard metal bars and broke his wrist. He had been so happy a second before that a fog of shock descended over us. My mom arrived at this exact moment and quickly drove us to the doctor, allowing me to sit in the backseat with my wailing son and traumatized daughter.

Two days before my ex-husband and I were to travel to Aruba, Caleb fell off another playground. This injury necessitated two surgeries and an excruciating six-month recovery. My mom and her two sisters had already planned to babysit so they arrived as planned. My ex took the trip. I stayed and it took all four of us to care for Caleb that week. At the end of each day, my amazing family refilled my coffers with laughter, love and support.

I’ve believed throughout Caleb’s life that some choose to see him as less than perfect. Some keep my son at a distance and assume that as a parent I must as well. They are so wrong. Behind many disabled people is a family who loves them fiercely. By exposing the underpinnings of the DiMeo family, Speechless is demonstrating to the neurotypical world that love isn’t defined by ability nor is family limited by biology.

The DiMeos are not representative of every special needs family, just like any other show about family doesn’t apply to everyone. What Speechless provides is profound glimpses of ordinary family life to which we can all relate. That is the beauty of this show. By several episodes in, J.J.’s cerebral palsy is about as important in the family dynamic as the overgrown front yard and the walls with handwriting all over them.

This is the strength and beauty and quiet message of Speechless. I hope it has a long run.

Grief and the Special Needs Parent

When my son Caleb was born in 1996, he was taken from me by ambulance before he was  12 hours old to have open-heart surgery in another state. Recovering from my second C-section in 17 months, I was forced to wait four days in a maternity ward, crying and staring at the wall, ignoring the hushed whispers of everyone who passed by my closed door. Finally, I left early, against medical advice, so I could see my son one more time before he might die.

I thank God that Caleb survived the surgery. I marvel at doctors who could create an aorta out of cadaver tissue and use a tiny piece of Dacron to close a hole between Caleb’s pumping ventricles.

Three weeks after surgery, six white-coat doctors came into the room to tell me that open-heart surgery was only the beginning. I had heard the term DiGeorge Syndrome (now called 22Q Deletion Syndrome) bandied about by different doctors during my time at the children’s hospital but the words didn’t stick, falling like non-metal from a magnet.

The doctors who came into the room were an immunologist, a neurologist, a general pediatrician, two geneticists and Caleb’s cardiologist. I listened in stunned silence as they told me that Caleb had this genetic syndrome and would require life-long care, a litany of therapies, special schools and a host of medical specialists to keep him healthy. They meant well. They were equipping me with vital knowledge.

I hadn’t processed the trauma of Caleb’s birth. I hadn’t processed that my four day-old baby had to have his ribs cracked open, his brain put on ice and his circulation stopped for an hour while his heart was surgically corrected. I hadn’t processed the four missed spinal tap attempts when he developed a fever.

When the doctors were about halfway through, I simply fell to the floor. Another parent in the shared hospital room came and helped me into a chair. As soon as I sat down, it felt like I would fall through it, circling endlessly down a rabbit hole.

I eventually got up and was sent home briefly due to risk of a nervous breakdown which I was probably already having. When I brought Caleb home a few days later, I was immediately thrust into being the full-time caregiver of a critically ill baby. Nine therapists flooded our home every week, we had at least two doctor visits each week and Caleb was severely sick for two weeks of every month for two full years.

When Caleb was four, during a routine check-up, his developmental pediatrician calmly tossed out that he was mentally retarded. I stopped breathing. I truly didn’t know. I didn’t want to know. Numb, I went home and fell into the first of many deep depressions. Grief pulled at me in shadows but I kept hiding from it.

Over the years, there have been month-long illnesses, hundreds of tests, horrific injuries and more unwanted diagnoses. Each one consumes me. Once it has passed, I have to remind myself to take time to grieve. It’s not an easy thing to do.

Grieving feels like a betrayal of my son. He’s still here. He’s still breathing. What right do I have to grieve?

Years later, I met with the children’s hospital at their request to tell them about the experience of finding out that my child was so sick. I told them I understood their intentions and was grateful for the information. I then told them that when they tell new parents that their child is not healthy, they also need to tell them that they have permission to grieve.

A few weeks ago, Randi Zaila posted a profound blog, Grieving My Living Child. She wrote: “My child is alive yet I grieve my loss over her every day. How awful others must think of me if they have actually lost their child to this world in both the physical and spiritual sense.”

Grief is a relentless bastard. As Patton Oswalt wrote in a gut-wrenching post about the recent loss of his wife: “Grief makes depression cower behind you and apologize for being such a dick.”

Grief can’t be quantified, compared or explained but it needs to be painfully endured. I was so impressed that Randi Zaila in only 10 months of being a mom to a child with special needs already understood that she needs to grieve the loss of a healthy child, the loss of the life that every parent expects to lead.

I wrote Randi that she will continue to grieve throughout her daughter’s life. Her grief isn’t over. She will need to process it many times or risk falling completely apart.

That’s the other thing about grief—just when you think you’ve gone through the worst of it, it shows up again, knocking at every window and darkening every door.

Caleb will be 20 years old in a few months. I have finally learned to grieve without negating the privilege of having him here.

I’ve written before that one of Caleb’s contemporaries became a Marine this year. Some of the kids who started out in special education with Caleb have graduated and found jobs. Others are in college or travelling the world. Though I rejoice for them, they are all reminders of what Caleb won’t be able to do and they are all triggers for grief.

This week, Caleb’s teacher told me that I need to focus more on all that Caleb can do. She’s right. He has come so far. Hope can deflate grief and I intend to draw that weapon more often.

What gives me the greatest hope is that mothers like Randi Zaila may signal a sea change in parenting special needs children. If they have gotten the message about necessary grief at such an early stage of their parenting, it will only strengthen them and prepare them for all of the challenges to come.

I pray that along with permission to grieve, these truly special parents are also imbued with hope to pull them out of it.