If Only I Could Send Autism to a Black Hole

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

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

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

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

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

Until.

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

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

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

No one has ever spoken to me like this.

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

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

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

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

“Upstairs,” I said, pointing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But he’s not a child anymore.

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

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

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

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

He inspires me to do the same.

 

Photo credit: Springer Nature

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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.

Unmeasurable Progress

For all the new parents out there, you either are or will soon be overwhelmed with all of the developmental growth charts.  When did the baby first reach for something?  Follow you with his eyes as you walk across the room?  I think there’s one for cooing too.  Then, the big ones: first time rolling over, first crawl, first step…  You get the gist.

For us special parents, this process is radically different.  You may be at a playground or a doctor’s waiting room when you notice, without even trying to, that a baby of a similar age is doing three or four more things that your child can’t.  You look down at the baby you love so much that your heart is leaking all over your insides.  You don’t want that precious child to even know they have missed something.  So you switch him to the other hip, gently turn your back on the others, and suddenly find the wall or window or any other place to be fascinating.

Still, at every doctor visit, there is a list.  When Caleb was very young, some of the doctors tried to treat him like every other patient.  They would get out their list with a big smile and say, “Okay, what are we doing now?”  After several shakes of my head (even then, I didn’t want to verbalize and answer, which could make Caleb feel bad about something over which he had no control), they would stand up and cheerfully say, “Well, maybe by the next visit.”

Fortunately for Caleb, we attended a clinic at the Children’s Hospital of Philadelphia when he was around six months old.  After seeing what felt like 40 specialists over two days, those doctors were able to get the ball rolling with Early Intervention, a term that is both wonderfully hopeful and sadly draining to most of us.  At one point we had 9 therapists in the house every week, doggedly working on speech, movement, attention, eye contact.  I was still desperately clinging to the thought that all of this intense help would help Caleb propel into preschool with all of the other neighborhood kids.  Until one day his physical therapist said to me, “How many other people on this street have PTs working in the home with their toddler?”  Harsh words, but harsh words became benchmarks for me.  Like a punch to the gut, if you can tighten your abs ahead of the blow, it is much easier to take.

Caleb has now been in school, in special, self-contained classes for over 16 years.  I can’t calculate how many IEPs we’ve attended.  I can remember the name of every teacher, especially the ones who are as entranced by this young man as I am.  I have become close friends with several of them.  When Caleb was in first grade, the wonderful, energetic and completely accepting young woman who taught him would come to our home and help us work out some behavior problems.  He melted into her one afternoon, and I could see the gratitude on his face that she understood him, and had helped me to as well.  Another teacher whom I now regard as an angel on earth became certified to work in the home with Caleb after an accident left him homebound for three months.  She worked so diligently with him and told me that she wished she could always work this way with him—he made so much progress.

Which brings me to the point of this particular entry:  Caleb’s milestones, missed and achieved, have been analyzed and catalogued ad nauseam for his entire life.  In several evaluations, he has been reduced to numbers or conditions or medical diagnoses.  I have been told by several specialists that he has plateaued, that where he is is where he will remain.  That is what their tools tell them.

But Caleb has his own tool box.  Along with the wonderfully affirming people in his life, he is able to pick out a tool and use it to access areas in his brain that I used to see as closed-off construction zones.  I have no measurement available to evaluate this dynamic, so I am calling it “Unmeasurable Progress.”

I’ve mentioned Caleb’s therapist before—this man has found a way to ask a question and receive a clear attempt at an answer from Caleb.  We can walk into his office with Caleb slightly slumped over, a frown tugging at the corners of his mouth, and when we leave 30 minutes later, Caleb is back to bouncing on his heels, and doing what the family calls his happy dance (waving his arms and leaning forward in a way that is just pure joy).  This therapist makes Caleb feel heard and even if I don’t fully understand the exchange, I rejoice in the metamorphosis.  This very kind man also told me that he thinks everyone underestimates Caleb.  He says Caleb could not have his very infectious and clever sense of humor if there weren’t intelligence to back it up.  I can’t measure that statement in codes, but it made me feel about three feet taller.

For the past two years, Caleb has attended a school with a very dedicated teaching team of three women and he absolutely adores all of them.  At some point in the first year, he began asking me to email his teacher in the morning before he left for school.  Caleb loves to quote TV shows or movies and he uses those quotes as communication.  His language is delayed and disordered so if he can mimic what someone else said, sometimes it makes sense and he can have a real conversation and know, like with his therapist, that he has been understood.  So every morning, after shower and medications, while waiting for the bus, he will ask me to email his main teacher, who has a laugh that warms my heart while I’m just sitting here thinking about it.  One day this week, he wanted me to tell her that he and I were watching the “Friends” episode where Joey, Chandler and Ross go to a hockey game and Ross gets hit in the face with the puck.  Caleb was laughing so hard that we had to rewind the scene a few times.  Without context, maybe his teacher would not have been able to place “Ross gets hit with hockey,” but with the email, Caleb and she were able to laugh about it as soon as he got to school.  This teacher, another angel on earth, has repeatedly told me she loves the emails because she knows they help foster this communication.  By reading the email first, she can catch what he is saying when he arrives in class.  I don’t think this technique even has a name, but it has created huge leaps in Caleb’s language skills.

After Caleb goes to sleep, I check on him at least once before I go to bed.  He’s almost always asleep but remembers this and almost always thanks me in the morning.  A few nights ago, he was wide awake so he asked me to sit with him for a few minutes.  For some reason he started remembering a “Berenstain Bears” episode where Papa got the hiccups.  In real life, if my daughter or I get hiccups, I can almost hear air raid sirens because Caleb becomes extremely, profoundly upset at hiccups.  So when he stated the line from the TV show, he ended with Papa having a hiccup.  The next time he said the line, I jumped in with a (blessedly) fake hiccup and Caleb emitted a laugh that began deep in his belly, and worked its way up, until he almost had happy tears in his eyes.  When he stopped, he said, “Again,” then repeated the line from the show and I jumped in with the hiccups.  This went on for 9 minutes.  I don’t keep records like this, but I do believe that is the first time in 18 years we have had a back-and-forth conversation for that amount of time.  We were both tired when it was over so I kissed him on the head and told him I would see him in the morning.  He talked frequently about the experience for a few days, and still asks me to jump in with a hiccup now and then.

These Caleb milestones wouldn’t fit on a chart and could not be graphed or diluted into numbers.  What tools can show a leap in conversation skills and the demystification of something that used to frighten him?  Still, these steps propel me forward with hope, because this child has not stalled.  He’s still growing.  I asked one doctor years ago, if typical adults still can grow and change, why can’t he?  The doctor said it would be different for Caleb, but I am ecstatic to shout that he was wrong.  Watch your kids.  Try to remember where they were a few months or a year ago.  Even if it’s something little, there might be progress.  You probably won’t be able to show it off at the playground or doctor’s office, but you can tuck it into your heart and it will help melt away the sadness that might be left over from missed milestones from someone else’s agenda.