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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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