Everyday Loss

In my little world, the last few months have brought an inordinate amount of death. A dear, dear friend named Jamie passed away after fighting cancer for nine long years and every time I think of her, I am haunted by her laugh and the smile that always lived in her sparkling, mischievous brown eyes. I think of her husband and two adult children who now have to carry on without the light that emanated from their wondrous wife and mom.

My friend Lisa, who lives with me in the trenches of special needs moms, lost her brother Dan after a long fight with cancer, even though he was in remission. Dan was so well-loved that at the celebration of his life after a private funeral, the venue was filled to capacity. The group chose to remember Dan by swapping funny stories and remembering the vibrant, kind and joyful man he was.

In our big world, you can’t turn on the news without hearing of innocents being slayed all around the world. It’s an angry time and an angry place with too much loss. I enjoy watching retrospective documentaries and I wonder what future documentarians will have to say about this volatile time.

At a birthday party the other night, I was talking with an acquaintance named Julia who quickly became a new friend. A few weeks ago, she had posted pictures on Facebook of a beautiful young woman, alongside some very sad words. So I asked Julia about her. She told me that that smiling girl was her darling daughter Amanda, who had been killed in a tragic car accident when she was 19 years old, on July 25, 1999. I’ve seen this woman socially several times and she always has a smile on her face that belies the horrific tragedy of what she went through 20 years ago. You would never know by looking of the weight of the burden she carries.

Before we spoke, I may have subconsciously set Julia into the nasty, embarrassing corner of my mind where I sweep people who look to me like they have lead perfect, happy lives with perpetually clean houses and new cars and no money worries and wonderful, fulfilling marriages and careers. That corner needs to be tented and fumigated as if it were housing the worst insects on the planet, because it is. There is no perfect anything. Everyone has a story and if we delude ourselves into thinking that they don’t, jealousy and anger will shrivel our hearts to raisins.

I’ve written before of the loss associated with raising a child with special needs. There is the loss of friendships you thought could withstand the new normal of medical visits, relentless hand sanitization and rules about who can touch what. There is the loss of family members you thought could withstand the rubber hammock of changing emotions and ABA- mandated lessons to follow. There is the loss of typical classrooms and sports or music or whatever hobby might have floated around the edges of your mind as part of the future for your child.

There is the loss of the feeling of pride of your newborn or toddler in public. The first time your child with autism completely loses it in a grocery store, or a football game, or anywhere where scrutiny hides like a demon in shadows. The love you feel for that young soul supersedes the stares, the whispers, the gossip. But it hurts. Oh, how it hurts. So you hold your head high, willing the tears to be quietly whisked away as if by windshield wipers. You hold the hand of that precious baby, sending all your love into the grip, while they twist and turn and contort to get away from you.

You can’t win. You won’t ever win. But that won’t stop you from trying.

You will try at school. You will try at your other children’s schools. You will try at block parties. And the mall. And the gas station. You will try at the community pool.

And you will always fail. Because it’s not about you.

It took years, eons to finally accept that Caleb was not meant for my world, nor me for his. That’s the cruelest reality about having a child with special needs. Neither of you fits. You love them fiercely, with a love that transcends time and space and the rude, glaring, invasive, probing stares of those who do not understand. But, alas, you two will never inhabit the same universe.

Perhaps the most painful is when that child, teenager and then adult, is in pain, and you try to offer comfort.

“Leave me alone,” or “I’m busy” is the refrain you will hear most often. Sometimes it will be a scream. Sometimes that scream will be accompanied by a flat hand to his own face.

So you step back, your weary heart wounded yet again. You try to will the tears to be sucked back into well-worn ducts, but somehow that doesn’t happen.

After these exchanges, I often find myself in the fetal position on my couch, wrapped in the denim blanket that once graced Caleb’s first big-boy bed. It has faded to the softest blue and it has several holes in it from so much use. It is my greatest comfort in the world.

Incomprehensively, I had to fight for this blanket in my divorce. I gave up something seemingly more valuable to keep that blanket. My ex-husband knew how much I need it, how when I wrap myself in it, I can go back in time, for a millisecond, and join the toddler who reached for me, who was comforted by my hugs. That little white-blonde-haired boy could trade tears for giggles in those days, when we pretended we were in a tent or when I tickled his belly. I had such high hopes for that chubby-cheeked little boy.

Now I wrap myself in that blanket when unbidden tears just start rolling out of my eyes as I wait to hear if a residential placement is available. I know we both need it but the thought of going through with it makes me feel like I’m trying to walk but I’ve accidentally nailed my shirt to the wall behind me. Even though Caleb is an adult now, when I look into his sea-glass green eyes I see that baby. I see all we have been through together. And I know with a gut-twisting thud how very difficult this will be.

I wish that Caleb could be graduating college right now. That he had a girlfriend and friends who would show up suddenly for dinner. I wish that Amanda had had these past 20 years to spend with her mom and become all that she ever wished to be. I wish that Jamie was with her family, making them laugh and loving them with the love she lavished so freely. I wish Dan was here to joke with Lisa and hold his wife’s hand.

Physical loss causes the deepest intake of breath. Julia told me that she didn’t think she would be able to breathe after Amanda passed away. She told me she is surprised that 20 years later, she is still breathing. Anyone who has ever lost someone will recognize her next statement: “Love never dies.”

No matter the loss, the love always remains. Sometimes it burns like a cigarette on a favorite pillow. Sometimes it aches, like the ache I feel when I want to hug Caleb and he says, “Hands to self.” Sometimes loss just lingers like a shadow that follows wherever you go.

Loss is loss is loss.

My loss with Caleb is called autism. Autism is like an alien who sucks out all of the connective tissues of relationships and leaves dried-out limestone where there should be living, pulsing blood and love and sweetness passing between two people. I will always, always love my son. And I will always, always curse the autism that takes him away from me.

My family helps me with Caleb and they all tell me exactly what I tell them all the time: “Being alone in the house with Caleb is lonelier than just being alone.” He’s there and not there at the same time. You naturally expect an interaction of which he is not capable. He cooperates with bathing, asks for meals and declares when he’s going to bed. Sometimes he will sit and color quietly next to me while my mom and I play a game, but mostly he stays on the top floor of our house, which is explicitly his.

So what will the loss be like when he eventually moves out? He was out last night with his father but I kept listening for his giant-like footsteps and kept putting my foot on the first stair to go check on him. How will the house feel? Will it be hollow like the physical loss of a loved one passing? Will it just be too quiet?

I can’t sit with these feelings for too long or I will risk losing a day to tears on the couch. Sometimes a day is okay, but sometimes the depression pulls and anchors me and it’s very hard to claw my way out.

Loss wears many faces. It comes for everyone in one form or another. The only way to diminish its soul-scarring effects is to talk with each other. Keep Jamie and Amanda and Dan alive by sharing stories and letting memories warm our hearts like gentle spring sunshine. For Caleb, I find other moms in my situation and we turn tears to laughter, which heals instead of drains.

Loss is a part of our existence, but the enemy of loss is love. Love makes loss retreat, so let’s love as hard as we can, as fully as we can, whenever we can.

 

Photo credit: Stocksy United

This blog is lovingly dedicated to Jamie Price Harkins, Amanda Williams and Dan True.

If Only I Could Send Autism to a Black Hole

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

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

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

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

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

Until.

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

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

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

No one has ever spoken to me like this.

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

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

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

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

“Upstairs,” I said, pointing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But he’s not a child anymore.

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

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

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

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

He inspires me to do the same.

 

Photo credit: Springer Nature

Run

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

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

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

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

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

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

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

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

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

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

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

Papa, it’s so hard and I’m so tired.

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

But it’s so hard. And I’m so tired.

Run. With perseverance.

But…

Run.

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

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

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

Papa, it’s so hard and I’m so tired.

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

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

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

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

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

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

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

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

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

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

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

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

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

“Hands to self,” he said.

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

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

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

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

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

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

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

Photo credit: Medium.com

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Not Quite Empty Nest When You Have a Young Adult With Special Needs

I haven’t posted in a while because, as I’ve written before, summer sucks about everything out of me. Caleb has had a great summer and is excited for school to start. So am I.

This week lots of my friends are posting about their oldest kid leaving for college. It’s a challenge for all parents. The little person you’ve known from birth is now flying off on their own, just as they should be, just as you raised them to do. It’s a phenomenal achievement for both kids and parents, but for parents it leaves a hole in the house. I often say about Sophie that when she leaves, she takes all the air and sunshine with her.

Sophie is a junior now and I should be used to her leaving, but when she left this week with her car heavy with almost everything she owns, I collapsed into a mess of tears. Sophie is smart, incisive, a great helper and one of the funniest people I’ve ever known. I miss everything about her.

Here’s where the not quite empty nest kicks in. For most of us parents with special needs kiddos, our kids will never leave the nest. I’ve talked with many older families over the years and in most of those cases, their special needs adult lives at home until a grave illness or death strikes one or more of the parents.

My goal is to let Caleb live with me for as long as he can. All the things I do to give him a happy life take a great toll on me, but I fully believe he deserves a happy life because he has been through so much. Life is incredibly challenging for him and it’s my duty to make his home life amazing. Plus, he’s a great and funny kid too.

Years ago, when Sophie and I first started talking about college, I realized that her leaving would hit me like an icy wind, reminding me that all is not normal in our family. As difficult as it is to say goodbye to your precious 18 year-old, when you have a dependent kid, it is a painful reminder that one will leave, but the other one never will.

It took me until Caleb was about four years old to fully understand just how challenging the world is for him. At any given time, he has at least 10 specialists who work to keep him healthy. Every visit with these wonderful providers serves to remind me that Caleb is not healthy. It took many more years to realize that Caleb would live with me forever.

As a parent, you work with your neurotypical child, helping to learn their letters, to complete mud replicas of Aztec villages, to practice whatever language they have chosen to study. You help them learn to swim and shuttle them all over the place for sports or music or debate clubs. All of these things, you hope, will prepare them for college. That’s the goal. It’s a natural expectation that your child will one day leave home and use all those skills to become a successful adult.

When your child has special needs, it’s a major upset to that expectation. Aside from missing Sophie, her leaving is also a stark reminder that the natural order has been disrupted. There are upsides to an empty nest, but we won’t experience them.

So, my fellow parents with a not quite empty nest, here’s what we need to do. First of all, it is vitally important that we grieve the loss of a normal transition to adulthood for our kids. You may not even realize that in the way-back of your mind you were still hoping your child might be able to be independent. For many people reading this, that is a reachable goal and I’m so, so happy for you. But for all the parents of amazing kids like Caleb, you have to acknowledge the grief so you can work through it.

I didn’t cry for so many years because I knew if I started, I wouldn’t be able to stop. We need to cry. That grief needs to come out or it will become toxic. As Sophie will tell you, now I cry at almost anything. Songs on the car radio. Commercials. Amazing performances on So You Think You Can Dance. I will tell you that being a crier is so much healthier than holding it all in.

The second thing we need to do is seek out day programs for our kids to attend when high school ends. Caleb has three more years and I’ve already started investigating. If I had the energy, I would write congress and lobby for them to provide extended schooling for our kids, which would be much cheaper than government-funded group homes. My energy stores are bankrupt right now, so I won’t be doing that.

The third thing we need to do is find something that we love to do. This one is really challenging for me because, at least during summer, we are stuck in the house all day because of the heat. So when Caleb wants time to himself, I read, watch tons of HGTV, play Fleetwood Mac on Pandora while I’m cooking. I burn candles after dinner because they just make me happy.

I’ve also found adult coloring books with stress-relieving patterns (there are lots to choose from on Amazon). Caleb and I color together while I play Lindsey Stirling on Pandora. It’s the ultimate in parallel play for him and it’s a great bonding activity for us.

We need to nourish our souls with joyful things so they don’t atrophy. Caregiving is enormously stressful and we need to replenish ourselves. If this sounds selfish to you, then consider it as strengthening your entire self so you are better able to take care of your child with special needs.

I know this will cause lots of eye-rolling but we need to eat healthy and exercise to keep ourselves healthy so we can live long and take care of our kids. I know this isn’t always realistic—so often, I feed Caleb his breakfast, give him his meds for the day and then have to rush out the door with only coffee for me. Just do your best. It’s better than not trying.

We also need to reach out. I don’t accept help easily, like so many parents. When I reach out, it’s to God in prayer. I find saying the Rosary enormously comforting. Sometimes all I can do is chant, “Help me. Help me.” I was doing this yesterday while driving with Caleb. I was in tears and trying to hide them because they upset him. We came upon an empty playground, got out and played for a few minutes. When we left, I was laughing. I got the help I prayed for.

I am not a model of all that I advise. I fall short all the time. I collapse a lot. I am extremely fortunate to have a large network of other moms of kids with special needs. We talk on the phone. A lot.

I wish every parent with a not-quite empty nest the best of luck in this painful transition. I wish that even if you can’t follow all of the advice above, that you try at least one. I wish we could have a worldwide virtual coffee date. I am open to other suggestions of how to cope with this stressful time. We need to lean on each other and learn from each other. That’s why my blog is called Neverland Without a GPS—we are in unchartered territory with no clue how to navigate it. But we’re here together.

helping hands