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

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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.