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…And Caleb Has Left the Building

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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

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Everyday Loss

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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

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

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

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

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

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

Until.

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

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

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

No one has ever spoken to me like this.

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

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

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

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

“Upstairs,” I said, pointing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But he’s not a child anymore.

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

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

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

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

He inspires me to do the same.

 

Photo credit: Springer Nature

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

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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.

Even at Your Most Stressed, Gravity Can Be Your Friend

Image Kate Welch1 Comment

falling-drops-1185825-1600x1200This past weekend I had the enormous privilege of watching a glass blower at a renaissance festival. Even in the sweltering heat, which normally sends me to the snow cone stand, I couldn’t drag myself away from his presentation in front of a very, very hot oven. Entranced, I listened intently to every step of his process and I found myself floored by one of his tools. Gravity.

I watched as the glassblower took molten glass out of one oven, rolled it, then collected colored bits to swirl in the glass. He put it into another oven to let it stretch, then, after several of these processes, he simply tilted his stainless steel pole down to let gravity do the work. Gravity helped create the most beautiful mug I have ever seen.

Since I’ve been a special needs mom for almost 20 years, my body is screaming at me to reduce the stress that comes from such a long struggle. In only the last two years, I have had to have spinal surgery to replace discs that just vanished. I’ve had pneumonia twice, torn a ligament in my leg, dealt with painful neuropathy from the disc pain, and still had a nasty cornucopia of other ailments too annoying to list here.

I share this because any of these illnesses could impact my ability to take care of my sweet Caleb, who depends on me for everything from wiping his bottom, to brushing his teeth, to every other sort of physical help you can imagine. I need to be well and strong to continue to care for him.

After exhausting most of Western medicine’s advice and treatment, I decided to explore other methods of healing. My first stop is always to my regular physician but I augment his treatments with essential oils, yoga (well, regular stretching because I am just not that bendy) and a new favorite, meditation. In my meditation, I connect directly to God—it’s deep prayer in a way I’ve never experienced before. One of my guided meditations tells me to sink into the pull of gravity.

I’ve been fighting gravity forever. As a child, I was always jumping on something, trying to get air between me and the floor. As a high schooler, I ran track, always trying to get my knees to fly one inch higher to widen my stride. After I hit 30 I began to use every possible wrinkle cream, looking to fight gravity’s effect on my face. I lift weights. I exercise. I do everything I can to combat gravity.

What if gravity can be a tool? What if we stop fighting it so much and learn to lean into it like a comforting, constant presence?

As special needs parents, we often find ourselves fighting against accepting a new diagnosis. We fight against that one relative who insists, “I was just like him. He’ll grow out of it.” We fight against school districts that suddenly decide special ed classes should be populated by geographical constructs rather than the need of the students to be grouped by their levels of ability. We fight against strangers who whisper or point or laugh when our child behaves in a way they find entertaining.

We fight and fight and fight.

I used to take boxing fitness classes. One thing my teacher drilled into us was that a missed punch takes much more energy than a punch that makes contact. She trained us to never miss a punch. When we’re fighting in our everyday lives, we need to consider whether that punch will land. Will our one punch make a difference or do we need to rally others to join us before we even pull back our arm?

If we’re going to fight, let’s make it count, but if our fight won’t make any difference at all, perhaps we should just keep our hands down. None of us can afford to be exhausted by throwing missed punches.

In an effort to take some of the fight out of my existence, I find myself setting my feet together on the floor and submitting to the comfort of gravity. The other day I found a flower on the sidewalk and I lifted it, then gently let go to see it fall, just like I knew it would.

We are inundated with the need to fight so many times on any given day. The call to fight often comes just when we are having a good moment, when we take a breath and feel normal for just half a second. Then our kid falls or begins to self-injure or becomes upset that a new car is parked on the street. Immediately we are launched into Mama Bear mode and all peace is shattered.

If a man can harness the power of gravity to create delicate, swirly, colorful blown glass, then maybe we can use gravity to find beauty too. In the midst of your child’s guttural screams, put your feet down. Gravity is there. When your child just won’t stop shaking his foot and tapping his hand at a speed faster than a hummingbird, look around you at the world and all the things gravity is holding in place.

At the end of a long day that has left you almost unable to crawl into bed, crawl in and revel in the gravity that pulls you to the bed. Stop fighting. Relax into it, and you will sleep more soundly.

The notion of gravity isn’t new (nods to Mr. Newton) but perhaps we can change our perspective of it and allow gravity to be a tool that can help us, instead of something that is always pulling us down.

We already have enough of those.

In moments where everything feels out of control, we can take a deep breath and remind ourselves that gravity has us firmly rooted to the ground. I know I haven’t thought this much about gravity since George Clooney and Sandra Bullock forced me to, but now that I am, I find it can be a great comfort in the midst of chaos, when nothing else around me is giving me anything close to comfort.

By changing our perspective of gravity being one more thing to fight, we can choose to see it as something that can create peace and even beauty. We can let go and know that gravity can be a help instead of something to always battle.

As Forrest Gump said, “That’s good. One less thing.”