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.

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Even at Your Most Stressed, Gravity Can Be Your Friend

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.”