…And Caleb Has Left the Building

Just over two weeks ago, my almost 23 year-old son Caleb went to live in a residential home about 40 minutes away. We are both still wandering in Neverland, a little dazed, still unsure of the landscape, still questioning what the future holds in her hidden hands.

I write this for anyone who has endured this or will endure this challenge, because it is unlike any other.

When I took Sophie to her college dorm in 2013, my mom, Sophie and I lugged all of her belongings up three flights of stairs in 95 degree heat. We had planned so well that the room was pretty much together in an hour. I then hugged Sophie, hard, told her how proud I was of her and how much I loved her and we left.

Sophie later told me that at the time she felt a bit taken aback, as she watched other parents stay all day, then take their kids out for dinner while she trekked to the cafeteria for her first meal, feeling a little shaky and alone.

I cried for about a month, missing the funny, sweet, helpful soul that Sophie is. The house felt empty, as though it too missed the breath of her. I now am enamored of the wife, PhD student and young woman she is. College shaped her and she blossomed through the experience.

Six years later, she now tells me that my leaving her was one of the greatest gifts I ever gave her because she realized right away that everything was on her. Overnight, she became one of the most self-reliant people I’ve ever known.

The day before we were to move Caleb to his new home, I Face Timed Sophie and her husband Al, whom Caleb adores. We told him that he was a big boy, and just like his sister and brother-in-law before him, he was now old enough to go to college. This was the best analogy we could conjure. His reaction was a gut-punch.

Caleb speaks in somewhat broken English. He communicates his wants and needs in as few words as possible. On this day, he said, word-for-word, while crying and lunging into my lap: “I don’t want to go to college. I love you, Mom. I want to take care of you.”

Stress has taken an awful toll on my body. My 18 health conditions are what secured Caleb’s placement. Maybe he knows of these. Maybe he thought he could care for me. But he doesn’t know that some of these conditions could be fatal and he needs to establish his own life in case I’m not here.

I maintain my relative sanity by not anticipating the future. I could never have envisioned this reaction and it left me crying and shaking, which I would do a lot in the next few weeks.

I use special needs picture-exchange software (Boardmaker) to explain changes or trips to Caleb. I made him one for this, showing that he would live in his new house, I would stay in mine, my boyfriend would stay in his, his dad and his wife would stay at theirs and that Sophie and Al would stay at theirs. I didn’t want him to feel he was being kicked out or replaced. This picture board calmed him a bit.

Over the next 45 minutes, Sophie and Al told Caleb how much fun he would have, that he would have new friends and that he could still go to the day program he adores. They told him he would have a new room and that we would all still see him.

Typical of Caleb’s incredibly strong and sweet soul, he finally said, “I like college. Sophie, Al, Mom come tomorrow?” We all said yes and he seemed happy.

We wanted his room to be fully finished the first time he saw it. My sweet father had already sent a painter to transform the room into a color called Blissful Blue, a favorite of Caleb’s. I had already mounted light and heat-blocking navy blue curtains with silver stars. I had a ceiling fan installed to keep the room cool. I had purchased all new Toy Story 4 bedding and made a super soft headboard for him to lean against.

After he left for his day program, I picked up the U-Haul and Sophie and Al drove three hours to come help me. Over the next four hours, ninja Sophie and Al packed up as much as they could of Caleb’s favorite things. I can’t remember what I did but these two worked with a synchronicity that astounded me. I am always awed by the strength of their marriage, in every situation.

They followed my U-Haul to Caleb’s new house but I had to leave immediately to go back and meet his bus. In the short time it took me to drive home and return Caleb to his new house, Sophie and Al had completely emptied the U-Haul and set up Caleb’s room. The book shelves were stacked, the tall DVD shelf was completely organized, and the TV and DVD hooked up and ready to go. When I arrived, we put up Toy Story 4 decals everywhere, including an incredibly large one that looks like a window with the characters coming through, a gift from sweet family members.

When Caleb saw the room for the first time, he said, “Wow!” He touched all of his familiar books, toys, the baby dolls he loves. He looked in the closet and saw his clothes hanging neatly. He touched the new bedding and marveled at the window decal above his bed.

As soon as it was all done, I reflected on how I had left Sophie at college. I remembered the slicing in my heart as I said goodbye to that child and I steeled myself for another slicing as I turned to Caleb. I knew this one would hurt even more.

I knew I had to leave. I knew dragging it out would only hurt us both. But as I looked at his still-baby hands and the chubby cheeks on his still-childlike face, our life together ran through my vision, pictures on old-fashioned film reels.

Caleb is the child for whom I almost died in childbirth. He was born at midnight and they wouldn’t bring him to me because he was blue, but they wouldn’t tell me that. I wouldn’t sleep until I had held him, nursed him. Our pediatrician came in, right after the nurse handed me my beautiful baby at 11 AM. He told me something was wrong with his heart, but they didn’t know what. Right behind him came EMTs, rolling a mobile crib to take him 2 ½ hours away.

That night came a call from a cardiologist at Children’s Hospital of Philadelphia, informing me that not only did Caleb have two heart defects that needed immediate surgery, but he believed, and was later proven right, that Caleb had DiGeorge Syndrome, now called 22Q Deletion Syndrome. I held the phone away from me, like this must be a sick joke, but he kept talking, telling me all the things that could go wrong for Caleb.

Caleb is the 4 day-old baby for whom I prayed through open-heart surgery. I stayed in a chair next to his crib for three weeks, doing immeasurable harm to myself and never healing properly from his C-section. I never regretted it.

Caleb is the child who would have 55 doctor visits a year, with specialists I didn’t even know existed. For the first two years of his life, he was really sick for two weeks of every month. He would get 105 degree fevers and then have seizures wherein he turned blue as his body tried to bring down the temperature. He needed another heart surgery at four months because he grew scar tissue from the open-heart.

Caleb, due to balance and coordination issues that would never fully develop, broke his wrist on one playground and his femur on another. When he falls, he doesn’t have the instinct to break a fall with his hands. He fell directly on his face several times, leaving angry red scratches from cement or mulch. He once fell on a wet floor at a restaurant, knocking the braces right off of his teeth.

He’s afraid of fireworks and dogs. He hates when the power goes out. He hates when anyone cries, I think because he recognizes pain and doesn’t want anyone to suffer. When he’s about to cry, he pinches the bridge of his nose, as if trying to stop it.

So saying goodbye to this child was infinitely more difficult than leaving Sophie at college, where she had a world of wonderful things to explore. Saying goodbye to Caleb meant leaving him in the care of strangers, in the company of three other male residents with special needs.

I kissed this giant boy and hugged him, getting to the U-Haul before he could see me cry. I tried not to picture him studying his room. I tried not to picture his confusion. I tried not to picture what he was thinking, because I never really know anyway.

A week after the move, I picked him up for some doctor appointments. He seemed happy, but he smelled different. His hair wasn’t combed the way I do. He had a mustache that I jokingly call half-way to Tom Selleck. Quick aside, I went right to Wal-Mart, bought an electric razor and shaved him in the parking lot. I’m so used to people staring at Caleb that this didn’t bother either of us one bit.

I posted a picture from that day on Facebook and a dear friend from high school messaged me with words from her own 80 year-old mother, who is taking care of her disabled son: “My mom said to remind you that no one will ever take care of Caleb as well as you do, but that doesn’t mean they aren’t taking care of him.”

I take enormous peace from this statement. But it’s still something I will have to work hard to accept.

Last night I met some friends at our favorite bar. I recently learned that I knew one of the darling bartenders as a child. Her brother was a good friend of Caleb’s in preschool. Though I see her frequently, I hadn’t seen him since about 2000. Last night, he came to visit his sister. He’s a grown man, with a beard and a backwards baseball hat, enjoying a drink at a bar. As soon as I recognized who he was, I had to leave.

Seeing that young man there reminded me of all that Caleb is not and never will be. Seeing him made me realize the chasm between him and Caleb, who as young boys weren’t all that different. Seeing him made my heart sink for the millionth time in Caleb’s life, a reminder that something went horribly wrong when I carried that sweet baby in my body. I had to leave because my poor friends have seen me cry way too many times in the past two weeks.

I went home to my empty house and didn’t feel home. I am now a mother with no children at home and I don’t quite know who that makes me.

Caleb goes up and down with his emotions—sometimes he wants to move back home in 2024 (the length of college, as my intelligent friends figured out) but he has now moved it up to 2020. Sometimes he likes it at his new home, sometimes he doesn’t, but he hasn’t said anything alarming. I’ve spoken with the staff about his hygiene. I will still keep taking him to doctor appointments and next month we will have a party for his birthday.

The most painful part is that Caleb and I are still in Neverland, just not together. I feel like he is on one side of the island and I’m on the other. Every instinct in me tells me to go to him, to bring him home and lavish him with the love and care I’ve always given him. But I feel a metaphorical hand on my chest telling me to wait, to give Caleb a chance to blossom like Sophie did.

I pray constantly that he may know I did this out of love, when I’m sure it doesn’t feel like that for him now.

So I sit on the shore, staring at the mountain range between us, listening for the slightest sound that he needs me. I hope my Peter Pan is finding his footing and learning to thrive and that he will only occasionally listen for me.

Then I will know it’s time for me to leave Neverland.

Photo credit: otherland-larp.fandom.com

Don’t Be Me

I have always been an overachiever.

Take last week. I am not quite 50 but was diagnosed with shingles. In my eye. Because, go big or go home, right?

Shingles is directly related to stress, which has been a constant unwanted companion since 1996 when my Caleb was born missing part of a chromosome. I’m sure there was stress before then. I know everyone is under stress. Stress can’t be quantified or compared or broken into any kind of functional test. However, the stress of being the mom of a special-needs, medical-fragile child is in its own category.

Recently, when I applied to have my now 22 year old precious, wonderful, amazingly strong son put on a list for residential housing, I was astounded to find out the criteria.

My doctors had to write why I was physically incapable of caring for my son.

I have moved 23 times, all over this glorious country, but in this particular state, there is a shockingly absurd lack of housing for those with special needs. A few years ago, a friend’s son was going through a two-week period of no sleep due to bipolar mania. She sought help from a developmental pediatrician we both revered. Unfortunately, even though the doctor did her extreme very best, there were only six beds available in the state for mental illness on that particular day. They were gone before she could apply.

My friend did all she could. She took her son home and lived through five more days of no sleep for her, her husband and their adult child.

There is something horribly wrong with this outcome.

When I asked three of my doctors to write letters for the state to place my son on the critical waiting list for housing, I figured each would write about one condition. To my horror and shame, the three of them came up with 19 health conditions that were debilitating, stress-related and a few of which will eventually prove fatal.

My first instinct is always to protect Caleb. He is my baby. He is my responsibility. He is a young man trapped in a 6’2” body that weighs over 240 pounds. He will keep progressing but will never be an actualized, functioning, independent adult. My deepest fear, the one that wakes me in sweat, shaking at 2:00 AM is that I will die and he will be placed wherever a bed is available, without me being able to help it feel like home. I never go back to sleep after those wakings.

So I sent the letter. We got approval to be on the list. After two tries, we found a wonderful, peaceful, loving, perfect home. Caleb had to complete a two-part TB test, which I initiated immediately. I began to decorate his new room in my head. I was planning how to help him through the transition and figuring out the best way to present this life-changing event to him.

But.

The night I chose the house and began the procedure, I cried for six hours straight. I feel like a failure to my child. I feel like I am abandoning him. I feel like I am abdicating responsibility.

Then, deep in my conscience, a shadowy finger beckons me and reminds me that I am providing for Caleb, for when I won’t be here. She reminds me that he is a young man and should have a life of his own. She reminds me that it will be best for both of us for him to establish his own life, with frequent visits and constant reassurance that he is so loved.

The morning after the six-hour tear session, my eyes were swollen, but I chalked that up to all of that awful sobbing. I figured I injured my eye with the violence of those tears or perhaps caused a stye.

Six days later, I woke up to an incredibly angry right eye. If I were to try to post a picture, I would need that technology which shades the picture, with a picture box warning that the image would be graphic. It was horrifying, truly, to see my eye closed by red and purple swelling that was so heavy I couldn’t open it.

Again, I figured I had some sort of eye infection. I was fortunate to get an appointment with an ophthalmologist that day. He walked in, asked me if it hurt to brush my hair (how the heck could he know that???) and when I replied that, yes, it did, he put some drops in my eye, looked at them through some device and calmly said, “You have shingles in your eye. You might go blind in that eye. Here’s some medicine.”

He tried to leave the room but I am a bulldog after challenging Caleb’s doctors for 22 years.

“What should I look for? How can I prevent blindness?”

He replied, “Take the medicine and come back Tuesday.”

My mom was with me. I looked to her and she was crying. The nurse wouldn’t meet my eye.

“One more question,” I asked, causing the doctor to sigh and hold his hand on the door but not fully open it.

“What caused this?”

“Have you been under stress?” he asked.

I laughed and said, ‘a little.’”

“There you go,” he replied, finishing his grip on the door and walking out.

I was numb. Now it was 19 conditions. When is it enough?

A-ha, but there’s more.

The next day, Caleb’s caseworker called to tell me that the wonderful, perfect home that had opened up for him was now not available due to funding. My world fell down around my feet like deflated balloons.

I have worked with a Theta Healer for a few years. When Western medicine can’t help me, I go to her. She’s like a therapist on steroids, who uses prayer and incredibly probing questions to ferret out the cause of an illness or condition. She speaks to the theta waves in the brain to help your brain heal your body. I always leave her office feeling healthier and ready to fight whatever is ailing me.

Three years ago I was struggling with Epstein-Barr, a virus that caused me to sleep 14-16 hours a day. There is no cure. I’ve read first-hand accounts of some people who never get over it.  I had a few sessions with her and was able to resume my normal life.

So I called her with this situation and saw her a few days ago. I explained all that was going on. She listened, and then quietly looked up.

“So you think that in order to not have to care for Caleb, you must be sick. And you keep getting sicker and sicker to prove that point.”

BAM.

There’s that old, cloying adage that parents don’t get sick days. Looking back over the past 22 years, I can now see that sometimes I would run myself down trying to be the perfect parent at all times. I would then get so sick or need surgery or completely fall apart instead of just taking some time for myself. I felt time for just me was selfish, just as I fear that letting my son live in a residential home is selfish on my part.

How many of you feel that way? You don’t have to be the parent of a child with special needs to feel this. You don’t have to be a parent. You could be caring for your parent, or a spouse or a sick pet. You could be someone with a job you don’t feel you can step away from. It can be anything that demands your full attention and siphons away any time to care for yourself.

Allow me to be the unwitting example of what can happen if you neglect yourself. When I do find the right place for my sweet son, I will go into mourning but after that, I want to watch myself carefully and see how many of these health conditions improve or disappear. I’ll be my own scientific study.

But it’s not too late for you. I know we can’t all stop whatever we are doing but we can take little steps to care for ourselves. One option is to learn how to breathe. I am at fault for constant fight-or-flight breathing, which causes toxic amounts of carbon monoxide to build up in your lungs. It’s all about the exhale. There are videos on YouTube and apps that help you learn to breathe.

There are also apps that offer three-minute meditations. My favorite is Headspace but there are plenty to choose from. I used to steal three minutes to hide in the bathroom from my screaming toddlers–and scream as loudly as I could into a towel so I wouldn’t frighten the little ears pressed so tightly against the doors. I wish I’d had an app then to help me make that time productive.

Found time is a treasure but we can all step outside for a breath of fresh air. Twenty minute naps flood me with energy to meet the day. Holding a cross or a crystal or whatever brings you peace can help too. I know these are tiny steps but I believe that taken together they can have a profound effect on your health over the years you may be battling stress.

The distilled message here is find something that brings you joy and peace. From there, you will gain the strength to do what you need to do. You will also strengthen your precious soul, mind and body and hopefully end up healthy before you rack up conditions that will weaken everything you need to be everything you are.

Photo credit: shutterstock.com

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

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 Side Order of Anxiety and Depression You May Receive When You Are the Caregiver of a Loved One with Anxiety and Depression

 

Anxiety and depression can quickly siphon the strength of the strongest person. Caring for a loved one who suffers from the crippling effects of these disorders can be debilitating for the caregiver. If your loved one also has special needs, like my son, these challenges are magnified and may render you limited in any help you can provide.

As a caregiver, the inordinate stress of caring for someone with many needs makes you vulnerable to your own set of anxiety and depression. When you are the sole caregiver, it is imperative to be a steadying force to help your loved one navigate frightening emotions.

Unfortunately I completely fail in this regard most of the time.

My son Caleb is 20 years old with a primary diagnosis of 22Q Deletion Syndrome and a related diagnosis of autism. He tests cognitively around age three to five which significantly complicates the level of care he requires. It’s difficult to look at a six-foot tall young man and remember that inside he is truly a tiny child who hasn’t developed the coping skills one would expect of a young adult.

Caleb has struggled with anxiety for two decades. Anxiety and depressive disorders run in both sides of our family so he was already predisposed to them, but our family life situation helped to create a constant state of anxiety for Caleb, his sister and me. I was in an abusive marriage with his father until I left when he was 16. There was no adequate way to explain the concept of divorce to him, so Caleb now thinks whenever any situation isn’t working that a divorce, of any kind, is coming his way, which raises his anxiety level.

Prior to the divorce, Caleb’s anxiety over his father’s verbal attacks on me became anxiety over anticipated abandonment. When these attacks would begin, Caleb’s older sister Sophie would find him and the two of them would hide in a closet together until my ex-husband stopped screaming. When Sophie went to college, even though Caleb and I lived on our own by then, he lost his beloved protector and his anxiety level climbed because he felt so vulnerable without her. I now take Caleb to a wonderful male therapist twice a month but it has taken him four years to try to process the horror of divorce and a splintered family.

Before Caleb was born, I already struggled with significant anxiety and depression of my own. Caring for him has accelerated my own conditions, and I now tend to fall quickly into the pit of depression and episodes of crippling anxiety. Ten years ago, when Caleb was in a body cast recovering from a broken femur, the inordinate stress of his care caused me such anxiety that I went blind for 90 minutes on two occasions. It still happens occasionally but thankfully for no more than 10 minutes at a time now. A few years ago a very intense panic attack sent me to the ER and the hospital kept me overnight.

Medications don’t help me, but they are the only option for Caleb because he lacks the communication skills to be talked out of his anxiety. When something frightens him, he will ask me questions about it, about every 60 seconds, until it has passed. His doctors and I are very careful to be sure he’s not overmedicated, but his dosages are higher than I would like because anxiety can otherwise pilfer good days from him.

We’ve tried using picture-exchange cards with some success and his therapist has taught us some creative communication skills. Both of these coping mechanisms are limited in approach, so when something new pops up that causes Caleb anxiety, it’s like I’m learning a new language. Delays in coping create more anxiety for both of us.

I try to remind myself that beyond the tiny piece missing piece of Caleb’s 22nd chromosome and the autism and mental retardation that he is in some ways a typical 20 year-old young man. He has no interest in talking about feelings with his mom. He isn’t interested in breathing techniques or yoga. Unlike neurotypical 20 year-olds, though, when Caleb is extremely upset he hits himself in the face with such strength that he draws blood. He screams and retreats. It’s very difficult to find a balance and for me to know how to help him.

Caleb and I are connected in a way that transcends most parent/child relationships. Because his verbal communication is so limited, I am his voice. I know what he’s thinking at almost any time, from nonverbal cues and from spending all of my time with him. I’ve been told that my aura merges with his when he needs help. Consequently, I can sense when a situation arises that will cause him undue anxiety, which raises my own anxiety, which Caleb feels and then reacts to. It’s the worst kind of cycle and it leaves us both exhausted.

Along with depression and anxiety, being the caregiver of a young adult with special needs often leads to isolation and confinement, which causes another level of depression. Caleb is charming and funny, but all social situations exhaust him to varying degrees. Disruption of routine causes a full-body meltdown. We live in a part of the country that rarely sees snow, but when it happens, the entire county shuts down for days, interrupting routine, school and activities that Caleb enjoys. Over the past four days he has said, “I hate snow. Snow go home” on repeat for all of his waking hours.

I’m sharing this here so that medical and psychological professionals who care for those with special needs can get a glimpse into why the caregiver maybe didn’t shower or put on clean clothes before an appointment. We may look older than our years. Many of us struggle with sleep disorders.

Research is building on caregiver stress, but we need more. Caregivers are often diagnosed with post-traumatic stress and anxiety disorders. The divorce rate when a couple has a child with special needs is 80%. Whatever we are doing right now isn’t working.

Most of us were not paragons of mental health to begin with. Then the ones whom we love more than life, through no fault of their own, drain away whatever reserves we have left. Most of us put a brave but fake smile on when we talk to others because if we let a glimpse of our inner turmoil surface we would completely fall apart. We can often rally for big events, like surgeries or illnesses, and then we collapse in a mess of our own. It’s not a winning situation.

Raising and loving a child with special needs is already a situation rife with challenge. Of the dozens of families whom I have been privileged to meet over the past two decades, most of the parents tell me that they already struggled with both anxiety and depression before their medically fragile child was born. Disappointingly, having a child with special needs doesn’t automatically imbue you with the strength which will be required. If anything, a child with so many needs simply reveals in harsh relief the fissures which already exist in both an individual and a family.

What can caregivers do to strengthen themselves and give their special needs loved one the best platform for a successful life? I really wish there were a simple, one-size-fits-all answer. One thing most families struggle with is finding appropriate, dependable help and assistance. I have no idea how to accomplish this.  Respite isn’t a luxury; it’s a necessity for families who are burdened with so many doctor appointments, behavioral challenges, illnesses, injuries, surgeries and the constant stress of atypical days. We need to learn to ask for and receive help, another endeavor in which I constantly fail.

If we are struggling with anxiety, depression or a paralyzing mix of both, we need to get help for ourselves. This help can be medications, rescue medications, therapy and support groups. I can’t overstate how much it helps to be able to talk with those who fully understand. You will find that you all speak the same language and this in itself is relaxing.

Because we are so often “on” for those around us, we need to find somewhere to release all of our own emotions. I keep two lists on Netflix: one of movies that make me cry and one of movies that make me laugh. Some days it’s hard to pick which one I need, but laughter and tears can get so many ugly emotions out and refresh our souls.

Every caregiver of someone who suffers from anxiety and depression needs to take care of themselves so that they can provide care without it draining them of the energy they need to provide that level of care. Each caregiver needs to decide exactly what they need to be able to function as a super-caregiver, and then seek out whatever it is they need to be that person.

Our loved ones deserve nothing less.