Unmeasurable Progress, Part II

On January 18, 2015, I wrote the first part of this blog entry. I talked about the tools professionals use to measure Caleb’s progress and chart his intelligence. I also talked about how Caleb has his own tool box and that his is the only one I really care about.

A few weeks ago, I was having coffee, watching the Today show while Caleb waited by the front door for the bus. Queen Latifah was being interviewed and was asked to name her favorite karaoke song. She belted out a few verses of Bon Jovi’s You Give Love a Bad Name. Cut to two seconds later and Caleb had found the song on my phone and was playing it. I keep saying how intelligent he is–despite what our conventional intelligence testing keeps trying to tell us.

Caleb has a diagnosis of hyperlexia, which means that he memorizes the shapes of words, rather than learning them phonetically. I was initially alarmed at this diagnosis, but the therapist we were working with quickly assured me that 90% of what typical adults read is sight reading—the same theory as hyperlexia. Most words we read often we don’t even bother to sound out. We just understand them and move on.

What Caleb has learned to do is memorize song titles from the XM console in my car. He then comes home and plugs those letters into YouTube and listens to his favorite music. He does the same thing with DVD titles, finding clips of his favorite parts of movies on YouTube.

If you meet Caleb, he will immediately ask you three questions: 1) When is your birthday? 2) What kind (brand) of car do you have? And 3) what color is it? When he was very young, he memorized all of the logos of cars and could recite them perfectly. He did this for years before I caught on. And more often than not, he will later remember the birthdays of people he has asked.

Years ago our geneticist told me that autopsies of those with 22Q Deletion Syndrome show that their brains have white matter where there should be grey matter and vice versa. What this translates to is that Caleb has cul-de-sacs in his mind where we have freeways. Some information can never get through.

But… he has found this workaround, this marvelous workaround to help him function in the world. He knows every month by name and loves to change the calendar. He often wakes up at midnight and changes all of the calendars in the house. He understands how to work my iPhone and his iPad with startling speed. He completes 500 piece puzzles in minutes and he does word searches like no one I’ve ever known.

Last year, Caleb was asked to join the Greenville Greeters, a group of people of all ages with disabilities who attend his day program with him. This group goes to corporations, where they wave and shout with great enthusiasm to welcome people as they arrive for work. I could never have conceived of such a joyful use of Caleb and his friends’ social talents. The Greeters website states: “This interaction fosters communication, breaks down barriers and can be informative and transformative to those who participate.”

Caleb has learned to adapt and thrive in our world, which many people, including myself, often find incredibly difficult to do.

I’m writing this for those other parents out there, the ones of young children who have recently been diagnosed with 22Q or any other disability. I’m writing for any parents-to-be who have been told there is something wrong with their baby. I want them to know that there is learning in our babies’ brains, even if it can’t be stripped down to an IQ score or reading level. There is no way to know what strengths your child will be born with, what personality traits they will have that can lead them to find their own workarounds. There will be challenges, some that will knock you to your knees, but there are also miracles waiting to unfold before you like swan wings.

Just this week at the Tony Awards, Ali Stroker became the first actress who uses a wheelchair to win the award for Best Supporting Actress in a Musical. She is the first actress with a disability to win a Tony Award ever. Paralyzed in a car accident at age 2, Stroker didn’t let her physical disability dissuade her from pursuing a career in musical theater. In my life, I’ve let lesser dreams die due to my own laziness, so I am humbled and enchanted by Stroker, who said in her acceptance speech, “This award is for every kid watching tonight who has a disability, who has a limitation or a challenge, who has been waiting to see themselves represented in this arena,” she said. “You are.”

Stroker has said, “When I began to sing, I just felt so free. There was like no limitation.” For her, and for so many of us, along every ability level of humanity, music is a conduit that frees our souls and fills our minds. How lovely that Stroker is being recognized for her remarkable talent.

Last week on America’s Got Talent, Kodi Lee, a 22 year-old young man who is blind and has autism, awed the judges and audiences everywhere with a spot-on performance of A Song For You by Leon Russell. He not only sang in perfect pitch, he also played along on piano. Lee’s voice and performance would have been remarkable on their own, but knowing how much he has had to overcome in his life, he took my breath away. The audience and judges stilled, so I know it affected them as well. Gabrielle Union even awarded him the coveted golden buzzer.

We will have gained so much when we leave out of Ali Stroker and Kodi Lee’s descriptions that they have a disability of any kind. We will all be richer when we realize that we are all part of this wonderful, tragic, magical, heartbreaking ball of humanity that loves and cries and laughs and fears. Distilled by whatever labels others wish to impose, we are all brothers and sisters.

When I was pregnant with Caleb, his older sister Sophie was still a baby. During pregnancy and her infanthood, I played lots of Vivaldi, Yanni (groan all you want but I still love that music), Kenny Loggins’ Return to Pooh Corner and various pop songs on the radio. I had read that music in the womb makes for a smarter baby. So I played music constantly.

Sophie went on to play the viola wonderfully. She met her husband Al, also a violist, in her high school orchestra. She was fortunate enough to play at Carnegie Hall on a high school field trip. She plays guitar and sings like Joan Baez. Whenever she would practice, Caleb would sit outside her room, his back to the wall next to the door, and just listen. For hours. He absolutely loved her concerts.

Sophie later told me that Caleb especially loves music played in the key of G. I’m not a musician but after she told me that, I could hear similarities in the music he loves. I have no doubt that if Caleb’s brain was not affected in just one spot, he could have been a great musician like his sister.

When Caleb heard Queen Latifah singing and found that song so quickly, I was flushed with the realization that music has plowed through one of those cul-de-sacs in Caleb’s brain, crumbling it into a dusty pile of old bricks. Music allows him to muse about his emotions and communicate in ways his mind can’t on its own. Like Ali Stroker stated, music makes him feel free.

There are so many ways we connect as humans. Language is the largest, and therefore the simplest way that we try to measure intelligence and progress. Music, in its composition, boils down to math, with the construction of tempo and notes. Math is a language that we always use to measure intelligence. Therefore, my Caleb, and those like him who understand music deeply in their minds, might be the most intelligent of all of us.

I don’t think we could ever begin to try to manage to understand or measure that kind of progress.

 

To learn more about the Greenville Greeters, click here: Greenville Greeters

To watch Ali Stroker’s Tony Awards acceptance speech, click here: Ali Stroker’s acceptance speech

To watch Kodi Lee’s AGT performance, click here: Kodi Lee AGT

Photo credit: Better Homes and Gardens

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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

The Fallacy of Eyesight

Caleb has had a favorite song for over six years, Matt Redman’s Blessed Be Your Name performed by the Newsboys. I will share a few verses in a minute but something just happened that I have to tell you about.

We have an Alexa device that doesn’t understand Caleb, so he asked me to request the song while he was eating lunch.

I made his favorite macaroni and cheese, mostly tuning out the first part of the song that I have heard a million times.

These verses are out of order but I’ve grouped them so you might understand Caleb’s reaction.

Every blessing You pour out, I’ll
Turn back to praise
When the darkness closes in, Lord
Still I will say… Blessed be your name

Blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

It’s so easy to assume that just because Caleb can’t always express emotion that he can’t feel everything like we all do. This is a fatal misunderstanding.

As the song ended, I went to get his plate and cup. He was wiping his eyes. Caleb cries like many young boys I have seen. No tears actually fall, but his eyes turn red and he pinches the bridge of his nose with his thumb and forefinger, trying to keep those tears from ever escaping.

Though not frequent, I know it signals something profound. I know he is feeling pain that is usually suppressed. I don’t know where the sadness goes and it hurts to think of him keeping so much pain inside instead of letting me or someone else help.

Caleb is one of the happiest people you will ever meet. He loves all things light and funny and when something tickles him, he roars with a deep belly laugh that crescendos into a high pitched squeal. He and my boyfriend have more private jokes than I’ve had in a lifetime. Caleb often laughs at nothing at all. He seeks joy constantly. He abhors sadness and anger.

When I saw him wiping his tears, the words from the song hit me like ice.

God you give and take away
Oh you give and take away
But my heart will choose to say
Lord, blessed be Your name

When it ended, I asked, “You love that song, don’t you, buddy.”

Through red eyes, Caleb replied, “Yeah.”

“Why is it your favorite,” I asked.

His answer shattered me

“The story of my life.”

Caleb does love The Story of My Life by One Direction, I believe for the same reason he loves Blessed Be Your Name.

Come closer to hear how profound this is. Caleb tests cognitively around age 5 but I believe he is much more advanced and that standardized testing isn’t sensitive enough to truly measure cognition. We don’t have the tools to measure intelligence that doesn’t fit into neat little boxes. We are missing out on so much by dismissing those who can’t ace an SAT or IQ test.

I’ve actually gotten angry with professionals who tell me Caleb’s IQ. To one, I said, “How about we give you an IQ test in Mandarin right now?” But I digress.

I see Caleb’s insight and intelligence in how he has analyzed and interpreted these two songs. It confounds me because the theme of both songs is a deep philosophical musing about one’s life. The lyrics require the listener to reflect and to search for an answer about why things happen. They require the listener to accept that which we can’t change.

One of Caleb’s challenges is that his diagnosis of 22Q chromosome deletion syndrome greatly impacted his brain. In this syndrome, there are already assumed learning differences and often some form of mental retardation. A geneticist told me years ago that when autopsies have been performed on someone with 22Q, in their brain there is white matter where there is supposed to be grey matter and vice versa. He said that where you and I have freeways, Caleb and others like him have cul-de-sacs. Some information can never, ever get through.

Imagine living a day like this. Knowing something, wanting to answer a question, wanting to ask a question, wanting to express anything only to have it blocked by your brain. It would be worse than that awful feeling of having something on the tip of your tongue. I can’t conceive of the level of frustration and hopelessness that must plague Caleb every minute of every day.

In addition to the issues from the syndrome, Caleb had open-heart surgery at four days of age. During surgery, the medical team had to stop Caleb’s circulation and keep his brain on ice for four hours, ending with a full blood transfusion. I’m not a doctor but I’ve read articles that insinuate that perhaps Caleb’s surgery went too long, that his brain was deprived of oxygen to the extent that significant mental retardation was the result. I don’t blame the doctors. I wanted my baby, in whatever state they could return him to me.

Caleb suffered several febrile (high fever) seizures until he turned five.  A 105 degree fever overwhelmed his system and a seizure was the way to bring his temperature back to normal. During them, he would turn blue and it would seem like he wasn’t breathing. I believe those contributed as well.

I’ve written how, in 2006, Caleb broke his femur at school. Surgery followed that afternoon and when I could see Caleb again, he was burning up. His body can’t regulate temperature and I believe his fever was 107. Though he was past the age where he would have a febrile seizure, Sophie and I believe he had several seizures that day, perhaps in surgery and in the recovery room. Again, the doctors did all they could and I place no blame. I wanted to get my baby home.

If you look at pictures of Caleb before and after the femur break, it’s as if you can see a dimming in the light behind his gorgeous baby blue eyes. It’s permanent and such a startling change. There are moments where he is especially engaged and you can get a sweet glimpse of who he could have been without this syndrome. Friends call it 10 seconds of typical. It gives me such hope and I yearn to wrap him in bubble wrap so the typical boy never goes away. But it recedes like a tide and is just as difficult to chase.

I share all of this about Caleb’s mental condition so that you may understand that Caleb crying today over a song was actually him screaming out that he knows his life has been difficult, and that he accepts it. Socrates would be so impressed that Caleb knows his precept: “The unexamined life is not worth living.”

So many people underestimate Caleb and those like him and I’m writing this to shout that these marvelous people know. There is sentient, deep, reflective, insightful intelligence locked inside someone who looks inferior to many people. Please, when you see someone challenged, wave if they look like they’d like it, smile if it looks like they may smile back, or simply ask for a blessing for them as you pass by.

We were at Wal-Mart today and Caleb saw row after row of Valentine’s Day heart boxes. I usually pick one out for him, but he was so excited I told him he could pick his own. He roared his happy growl with that squeal at the end and a Wal-Mart employee smiled so engagingly at him that I said, over my shoulder, “Thank you so much for thinking that was cute.”

“But he is cute,” she said.

“I know,” I responded, “but I love when others see it too.”

Even though I’m focusing on what Caleb can express, there is something more painful with which he has to deal. Caleb, I believe, understands everything. He’s teaching himself to read by memorizing song titles and then typing them into his iPad. He’s mostly quiet, but he’s taking in all of the conversations around him, even things I don’t want him to hear.

I’ve been writing about the denial we received for Caleb to live in residential housing. I filed an appeal a few weeks ago, in an eight-page single-spaced plea to our state’s DDSN board. This week I received a letter from the state director, telling me that she read my appeal and is overturning the denial and placing him on the waitlist, for which I am eternally grateful.

Caleb has been picking up on all of this new language about a home. I haven’t told him directly because there is nothing available at this time. Telling him now would only fill him with anxiety and fear that don’t have an end-date. I will only tell him when a decision has been made.

I know it will be so difficult for him at first but I also know that he will thrive in a structured setting with friends and a caretaker. It will take time and if it doesn’t work, I’ll bring him back home if I am physically able. From all he has gleaned from overheard conversations, I know he can sense a major change on the horizon.

So this is the final verse of the song that muses on good times and hard times, triumphs and challenges:

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name

My amazing Caleb lives a life of complete trust in God. I’ve never seen a more pure example of a good and faithful servant and I’m grateful, humbled and beyond blessed to be his mom.

Photo credit: Medium

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