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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Side Order of Anxiety and Depression You May Receive When You Are the Caregiver of a Loved One with Anxiety and Depression

 

Anxiety and depression can quickly siphon the strength of the strongest person. Caring for a loved one who suffers from the crippling effects of these disorders can be debilitating for the caregiver. If your loved one also has special needs, like my son, these challenges are magnified and may render you limited in any help you can provide.

As a caregiver, the inordinate stress of caring for someone with many needs makes you vulnerable to your own set of anxiety and depression. When you are the sole caregiver, it is imperative to be a steadying force to help your loved one navigate frightening emotions.

Unfortunately I completely fail in this regard most of the time.

My son Caleb is 20 years old with a primary diagnosis of 22Q Deletion Syndrome and a related diagnosis of autism. He tests cognitively around age three to five which significantly complicates the level of care he requires. It’s difficult to look at a six-foot tall young man and remember that inside he is truly a tiny child who hasn’t developed the coping skills one would expect of a young adult.

Caleb has struggled with anxiety for two decades. Anxiety and depressive disorders run in both sides of our family so he was already predisposed to them, but our family life situation helped to create a constant state of anxiety for Caleb, his sister and me. I was in an abusive marriage with his father until I left when he was 16. There was no adequate way to explain the concept of divorce to him, so Caleb now thinks whenever any situation isn’t working that a divorce, of any kind, is coming his way, which raises his anxiety level.

Prior to the divorce, Caleb’s anxiety over his father’s verbal attacks on me became anxiety over anticipated abandonment. When these attacks would begin, Caleb’s older sister Sophie would find him and the two of them would hide in a closet together until my ex-husband stopped screaming. When Sophie went to college, even though Caleb and I lived on our own by then, he lost his beloved protector and his anxiety level climbed because he felt so vulnerable without her. I now take Caleb to a wonderful male therapist twice a month but it has taken him four years to try to process the horror of divorce and a splintered family.

Before Caleb was born, I already struggled with significant anxiety and depression of my own. Caring for him has accelerated my own conditions, and I now tend to fall quickly into the pit of depression and episodes of crippling anxiety. Ten years ago, when Caleb was in a body cast recovering from a broken femur, the inordinate stress of his care caused me such anxiety that I went blind for 90 minutes on two occasions. It still happens occasionally but thankfully for no more than 10 minutes at a time now. A few years ago a very intense panic attack sent me to the ER and the hospital kept me overnight.

Medications don’t help me, but they are the only option for Caleb because he lacks the communication skills to be talked out of his anxiety. When something frightens him, he will ask me questions about it, about every 60 seconds, until it has passed. His doctors and I are very careful to be sure he’s not overmedicated, but his dosages are higher than I would like because anxiety can otherwise pilfer good days from him.

We’ve tried using picture-exchange cards with some success and his therapist has taught us some creative communication skills. Both of these coping mechanisms are limited in approach, so when something new pops up that causes Caleb anxiety, it’s like I’m learning a new language. Delays in coping create more anxiety for both of us.

I try to remind myself that beyond the tiny piece missing piece of Caleb’s 22nd chromosome and the autism and mental retardation that he is in some ways a typical 20 year-old young man. He has no interest in talking about feelings with his mom. He isn’t interested in breathing techniques or yoga. Unlike neurotypical 20 year-olds, though, when Caleb is extremely upset he hits himself in the face with such strength that he draws blood. He screams and retreats. It’s very difficult to find a balance and for me to know how to help him.

Caleb and I are connected in a way that transcends most parent/child relationships. Because his verbal communication is so limited, I am his voice. I know what he’s thinking at almost any time, from nonverbal cues and from spending all of my time with him. I’ve been told that my aura merges with his when he needs help. Consequently, I can sense when a situation arises that will cause him undue anxiety, which raises my own anxiety, which Caleb feels and then reacts to. It’s the worst kind of cycle and it leaves us both exhausted.

Along with depression and anxiety, being the caregiver of a young adult with special needs often leads to isolation and confinement, which causes another level of depression. Caleb is charming and funny, but all social situations exhaust him to varying degrees. Disruption of routine causes a full-body meltdown. We live in a part of the country that rarely sees snow, but when it happens, the entire county shuts down for days, interrupting routine, school and activities that Caleb enjoys. Over the past four days he has said, “I hate snow. Snow go home” on repeat for all of his waking hours.

I’m sharing this here so that medical and psychological professionals who care for those with special needs can get a glimpse into why the caregiver maybe didn’t shower or put on clean clothes before an appointment. We may look older than our years. Many of us struggle with sleep disorders.

Research is building on caregiver stress, but we need more. Caregivers are often diagnosed with post-traumatic stress and anxiety disorders. The divorce rate when a couple has a child with special needs is 80%. Whatever we are doing right now isn’t working.

Most of us were not paragons of mental health to begin with. Then the ones whom we love more than life, through no fault of their own, drain away whatever reserves we have left. Most of us put a brave but fake smile on when we talk to others because if we let a glimpse of our inner turmoil surface we would completely fall apart. We can often rally for big events, like surgeries or illnesses, and then we collapse in a mess of our own. It’s not a winning situation.

Raising and loving a child with special needs is already a situation rife with challenge. Of the dozens of families whom I have been privileged to meet over the past two decades, most of the parents tell me that they already struggled with both anxiety and depression before their medically fragile child was born. Disappointingly, having a child with special needs doesn’t automatically imbue you with the strength which will be required. If anything, a child with so many needs simply reveals in harsh relief the fissures which already exist in both an individual and a family.

What can caregivers do to strengthen themselves and give their special needs loved one the best platform for a successful life? I really wish there were a simple, one-size-fits-all answer. One thing most families struggle with is finding appropriate, dependable help and assistance. I have no idea how to accomplish this.  Respite isn’t a luxury; it’s a necessity for families who are burdened with so many doctor appointments, behavioral challenges, illnesses, injuries, surgeries and the constant stress of atypical days. We need to learn to ask for and receive help, another endeavor in which I constantly fail.

If we are struggling with anxiety, depression or a paralyzing mix of both, we need to get help for ourselves. This help can be medications, rescue medications, therapy and support groups. I can’t overstate how much it helps to be able to talk with those who fully understand. You will find that you all speak the same language and this in itself is relaxing.

Because we are so often “on” for those around us, we need to find somewhere to release all of our own emotions. I keep two lists on Netflix: one of movies that make me cry and one of movies that make me laugh. Some days it’s hard to pick which one I need, but laughter and tears can get so many ugly emotions out and refresh our souls.

Every caregiver of someone who suffers from anxiety and depression needs to take care of themselves so that they can provide care without it draining them of the energy they need to provide that level of care. Each caregiver needs to decide exactly what they need to be able to function as a super-caregiver, and then seek out whatever it is they need to be that person.

Our loved ones deserve nothing less.

The Unwelcome Surprise Awaiting Parents of Young Kids with Special Needs

Parents of young children with special needs already know their lives can’t be planned with any accuracy. Illnesses, behaviors, school and social problems pop up like fire ant hills. The one thing upon which we can depend is a team of medical specialists.

That is, until the child becomes a young adult and is forced to find an entirely new team. I never knew this would happen. It wasn’t in the manual. So I’d like to help prepare other parents for what is to come.

Your child can be fired by their pediatric doctors when they turn 18.

By the time your child turns 18 or 20, you are fully dependent on your team and have an internal GPS of the children’s hospital. You know exactly how many minutes it takes in traffic to get to the office. You know the quietest place to sit in the waiting room. You bring your 20-pound binder with a full list of questions to each appointment.

Before Caleb’s 1996 birth, I don’t think I even knew that children’s hospitals existed. I must have driven by them and looked past them. After 20 years, we have now visited several children’s hospitals in five different states. They all attempt to be bright and colorful but there is nothing bright or colorful about having to be there. I saw the halls and grandiose seating areas through a grayed-out Instagram filter.

On my first visit to the Children’s Hospital of Philadelphia to visit my very sick baby boy, his face was contorted in a grimace of pain. Red, green and yellow plastic tubes stuck through his skin into his heart and lungs, EEG leads were tangled everywhere, and his hand was taped to a board to keep an IV in place. Numb, I watched as babies were wheeled in and out of the pediatric cardiac ICU while mechanical beeps rippled about me in Doppler waves.

A few days later I met the first of many specialists. I didn’t know there were so many kinds of doctors, or that they had pediatric counterparts.

When you find out how many specialists your child may need, the effect is similar to waking up in a strange place. You should recognize your surroundings but all you feel is panic and fear. In Caleb’s lifetime, he has needed a regular pediatrician, general pediatrician, pediatric cardiologists, immunologists, infectious disease specialists, neurologists, endocrinologists, developmental pediatricians, orthopedic surgeon, general surgeon, psychologist, regular therapist, otolaryngologist, plus a host of speech, physical and occupational therapists.

Over 20 years, I made the transition from shock that my child needed so many doctors to complete dependence on them. I went from not wanting to be in a children’s hospital to never wanting to leave. With an average of 55 visits each year, these doctors were integral for Caleb and me. I learned their language to the point that several asked me if I’m a doctor.

In 2006, Caleb broke his femur while trying to be Buzz Lightyear. The poor kid doesn’t have reflexes to break any fall, so when he landed from a height of 18 inches, his femur snapped about three-quarters of the way up. After arriving at the hospital by ambulance, I was running alongside his gurney when a nurse told me there were two Army medics who would like to follow along. I welcomed them into the fray of Caleb’s life and rattled off his 24 different diagnoses. At one point, one of the medics stopped and asked the nurse if I was a doctor. Smiling sadly, she said, “No. These moms know everything.”

I was flattered and repulsed by her response. I never wanted to be that mom. I wanted to be the mom who was cheering on my son the quarterback or chaperoning science fairs and school dances. But that wasn’t meant to be.

When Caleb turned 18, we were both still completely dependent on all of the pediatric specialists who had helped him so much. We were oblivious that this time was coming to an end. I ignored the stares of parents with neurotypical babies or young children as we sat in the same waiting room. I had started to notice there were no other people Caleb’s age but it just didn’t click the way it should have.

Caleb’s pediatrician was the first to tell me that she could no longer treat him. It was a gut punch because she was trained to know that when he presented with a rash, it might be staph. Caleb has always been a zebra and the learning curve for doctors is at least two years. Not only were we losing an adored doctor who understood and could appropriately treat Caleb, we had to start all over with a new doctor. It felt like a seventh-grade breakup.

The flip side of medical professionals thinking I’m a doctor is that new ones almost seem to suspect that I might have Munchausen By Proxy. Or they know I’m not a doctor and think I’m trying to make a diagnosis. Caleb has been my life’s work–I can see in my head how all the odd symptoms might add up to something only Dr. House could find.

Knowing that anyone might think I could either cause or imagine some of the terrible things Caleb has fought makes me physically ill, but I have learned to persevere with my listing of his symptoms and then wait patiently while they are confirmed. This usually culminates in respect from the doctor and then we can all go back to the most important job of caring for Caleb, but it’s a game I’m really tired of playing. I’m not a doctor but I know my kid and his history better than anyone else.

Caleb mentally tests around age three to five, so he felt comfortable in an office with young children. He relates to them. He loved the bright colors in children’s hospitals, which made me belatedly realize the décor is for the kids, not the parents. He was so comfortable there and now he has to contend with drab adult offices.

After the pediatrician fired us, then came the cardiologist. Understanding the trauma of losing a trusted doctor, they hired a transitional doctor to bridge the gap between pediatric and adult care, for which I am incredibly grateful. I wish more practices would do this.

We have now been officially fired from all of the pediatric specialists. Most of them were able to recommend an adult counterpart, but the most difficult doctor to find was a primary care provider. When I mentioned that Caleb has autism, several offices told me they weren’t accepting new patients. I finally called my personal doctor, who had never met Caleb, and was told that he, too, was not accepting new patients.

Exhausted and frustrated, I told the nurse, “Before you say no, you need to know that Caleb is every doctor and dentist’s favorite patient. He is so well-behaved. He’s sweet and cooperative and I will always be with him.”

She was silent, so I continued, “He has so many specialists that all I really need is a doctor to treat ear infections and maybe the flu. For everything else, I will take him to a specialist.”

The nurse spoke to the doctor, who finally agreed to take Caleb on as a patient. I thanked him profusely at our first appointment and he told me he was amazed at what a wonderful young man Caleb is. I smiled. I already knew.

Caleb is truly an exception. I have friends whose kids with autism are violent or need to be sedated for a routine tooth cleaning. As their kids age out of pediatrics, they are being met with outright refusals for treatment. Where on earth can they go when no one will treat their young adult? I understand the dilemma for doctors, and I understand the frustration for parents. I have no clue where to find the answer to this one.

I don’t think anyone seeks out the comfort we find in children’s hospitals but when you are suddenly pushed out the door, it makes you realize that things didn’t unfold like you hoped. You dreamed that your child would be cured, or that he would be the one to break all the rules. In many cases like my own, you leave the children’s hospital wearing a heavy cloak of dread for the future. You are now the parent of an adult with special needs and the end is nowhere in sight. I think this is another reason why leaving the pediatric world behind is so painful.

So here is my advice to every parent whose special needs child is around age 16. Start the search now for providers who might treat your soon-to-be young adult. It feels like it will never happen but it will and you need to be prepared. As the infectious disease doctor who fired us told me, “I’m a specialist in little kid issues, Caleb needs someone who understands the challenges he will face as an adult.”

 

 

Grief and the Special Needs Parent

When my son Caleb was born in 1996, he was taken from me by ambulance before he was  12 hours old to have open-heart surgery in another state. Recovering from my second C-section in 17 months, I was forced to wait four days in a maternity ward, crying and staring at the wall, ignoring the hushed whispers of everyone who passed by my closed door. Finally, I left early, against medical advice, so I could see my son one more time before he might die.

I thank God that Caleb survived the surgery. I marvel at doctors who could create an aorta out of cadaver tissue and use a tiny piece of Dacron to close a hole between Caleb’s pumping ventricles.

Three weeks after surgery, six white-coat doctors came into the room to tell me that open-heart surgery was only the beginning. I had heard the term DiGeorge Syndrome (now called 22Q Deletion Syndrome) bandied about by different doctors during my time at the children’s hospital but the words didn’t stick, falling like non-metal from a magnet.

The doctors who came into the room were an immunologist, a neurologist, a general pediatrician, two geneticists and Caleb’s cardiologist. I listened in stunned silence as they told me that Caleb had this genetic syndrome and would require life-long care, a litany of therapies, special schools and a host of medical specialists to keep him healthy. They meant well. They were equipping me with vital knowledge.

I hadn’t processed the trauma of Caleb’s birth. I hadn’t processed that my four day-old baby had to have his ribs cracked open, his brain put on ice and his circulation stopped for an hour while his heart was surgically corrected. I hadn’t processed the four missed spinal tap attempts when he developed a fever.

When the doctors were about halfway through, I simply fell to the floor. Another parent in the shared hospital room came and helped me into a chair. As soon as I sat down, it felt like I would fall through it, circling endlessly down a rabbit hole.

I eventually got up and was sent home briefly due to risk of a nervous breakdown which I was probably already having. When I brought Caleb home a few days later, I was immediately thrust into being the full-time caregiver of a critically ill baby. Nine therapists flooded our home every week, we had at least two doctor visits each week and Caleb was severely sick for two weeks of every month for two full years.

When Caleb was four, during a routine check-up, his developmental pediatrician calmly tossed out that he was mentally retarded. I stopped breathing. I truly didn’t know. I didn’t want to know. Numb, I went home and fell into the first of many deep depressions. Grief pulled at me in shadows but I kept hiding from it.

Over the years, there have been month-long illnesses, hundreds of tests, horrific injuries and more unwanted diagnoses. Each one consumes me. Once it has passed, I have to remind myself to take time to grieve. It’s not an easy thing to do.

Grieving feels like a betrayal of my son. He’s still here. He’s still breathing. What right do I have to grieve?

Years later, I met with the children’s hospital at their request to tell them about the experience of finding out that my child was so sick. I told them I understood their intentions and was grateful for the information. I then told them that when they tell new parents that their child is not healthy, they also need to tell them that they have permission to grieve.

A few weeks ago, Randi Zaila posted a profound blog, Grieving My Living Child. She wrote: “My child is alive yet I grieve my loss over her every day. How awful others must think of me if they have actually lost their child to this world in both the physical and spiritual sense.”

Grief is a relentless bastard. As Patton Oswalt wrote in a gut-wrenching post about the recent loss of his wife: “Grief makes depression cower behind you and apologize for being such a dick.”

Grief can’t be quantified, compared or explained but it needs to be painfully endured. I was so impressed that Randi Zaila in only 10 months of being a mom to a child with special needs already understood that she needs to grieve the loss of a healthy child, the loss of the life that every parent expects to lead.

I wrote Randi that she will continue to grieve throughout her daughter’s life. Her grief isn’t over. She will need to process it many times or risk falling completely apart.

That’s the other thing about grief—just when you think you’ve gone through the worst of it, it shows up again, knocking at every window and darkening every door.

Caleb will be 20 years old in a few months. I have finally learned to grieve without negating the privilege of having him here.

I’ve written before that one of Caleb’s contemporaries became a Marine this year. Some of the kids who started out in special education with Caleb have graduated and found jobs. Others are in college or travelling the world. Though I rejoice for them, they are all reminders of what Caleb won’t be able to do and they are all triggers for grief.

This week, Caleb’s teacher told me that I need to focus more on all that Caleb can do. She’s right. He has come so far. Hope can deflate grief and I intend to draw that weapon more often.

What gives me the greatest hope is that mothers like Randi Zaila may signal a sea change in parenting special needs children. If they have gotten the message about necessary grief at such an early stage of their parenting, it will only strengthen them and prepare them for all of the challenges to come.

I pray that along with permission to grieve, these truly special parents are also imbued with hope to pull them out of it.

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.”

When Normal Isn’t The Medical Result You Want

gasoline-pump-normal-1417953-1279x850We all know what it’s like when new labs are ordered for our kid. I think we probably all react in the same way: gut clenched, inhaled but not exhaled breath, then days waiting for results, alternating between dread and hope.

My friends with older kids and I have talked about the cumulative effects of caring for a medically challenged child. Over time, the energy needed to properly care for the child diminishes, seeping out of our bodies like air leaking from a balloon. The cumulative effect of tests like blood work is that we know, with horrifying clarity, that sometimes there is already a new diagnosis lurking in our child that we didn’t even know about. We know as we receive the call from the nurse that our lives can change in an instant.

Last week during a visit with the developmental pediatrician, I told her that Caleb’s overheating issues are escalating. He overheated one day this winter when it was 45 degrees out. Years ago I was told by a neurologist who was treating Caleb that this overheating problem can be fatal. The cumulative effects of trying to keep Caleb stable are constant vigilance and its antithesis, complete exhaustion and fear.

In the past, we’ve seen other neurologists, endocrinologists and thyroid specialists, all of whom have tried in vain to figure out Caleb’s overheating problem. It goes beyond simple Anhydrosis, which is the inability to sweat. Caleb’s feet sweat but not enough to cool him properly. Nothing else on his body sweats so heat is trapped, making his extremities bright red and leaving him lethargic and sick. I was told if he is left in this state, his internal organs will cook themselves, with no outlet for the heat.

Caleb, with his limited communication, can only tell me if he’s too cold (which is also a health problem for him). He can only tell me that he was hot, not that he is hot. When he’s cold, he now knows to get a sweatshirt or a blanket. But when he’s hot, he suffers. Being too cold or too hot affect his temperature and it can sometimes take days before he returns to normal.

One doctor wanted to cut into Caleb’s sweat glands to examine his sweat glands and see if he could learn anything more about this uncommon and dangerous condition. I asked him if he would then be able to fix the condition and he said no. I responded that we would not be going on that particular exploratory mission.

Last week, at the end of the visit with the developmental pediatrician she noticed that we hadn’t had labs performed in a few years. She went down an impressive list, calling for very specific tests that could indicate failure in autonomic functions of the body like sweating. She added a few other tests since we were going to be sticking him anyway and we threw up a prayer that one of the tests could provide an answer.

I took Caleb right to the lab and, champ that he is, he watched the needle go in and counted the five vials that were drawn. He so does not get that bravery from me.

Yesterday Caleb and I had just left his therapist’s office. We were heading home so I could start dinner and he could decompress with his iPad. Caleb chose a rap station and we were just be-bopping along when the phone rang.

Caleb is practically psychic when it comes to ringing phones. He can tell if it’s his sister, his grandparents, even the name of which friend of mine is calling. It’s a little freaky. When the phone rang, he didn’t know who it was. He put his hand on my arm and looked fearful as he said, “Who is it?” I told him it was his doctor and answered the phone.

What she told me swung me away from the worry that our lives could change in an instant. Her words swung me so quickly that I felt I was on one of those round things at the playground where you hold a side and run and run until you hop on and spin forever. I felt like I was being thrown from that piece of equipment.

“Caleb’s bloodwork show that he is remarkably normal,” she said.

I squinched my face up and said, “What?”

All of his labs, testing all of those functions, were within the normal ranges for a 19 year-old young man.

This is normally great news. This is normally reason to celebrate. I can count on one hand the times when Caleb has been referred to as normal. In fact, we only use the word typical or non-typical when referring to Caleb or others because normal has some unsettling connotations. But for the purposes of this blog, we’ll go with normal.

So why was I frowning? Why did I get the sinking feeling in my stomach that I usually get when given dire results?

We are no closer to understanding why Caleb overheats, why he will sometimes get off an air-conditioned bus with red hands and his temperature two degrees above normal. We are no closer to being able to help him. The magic potion I expected to be presented to us after all the bloodwork turned out to be only ashes blowing on a sidewalk.

I thanked the good doctor and hung up the phone, chuckling to myself.

“You want things to be normal. This is good. What is wrong with you? You should celebrate that no new diagnosis popped up today which would require changes to our already overly-complex daily routine.”

I grew silent, feeling tears slipping from the corners of my eyes. I have to wipe them away quickly, before Caleb sees them, or they will throw his day for a cruel loop and take him hours to calm down.

But I wanted an answer. I wanted a treatment or a plan that could help this most amazing young man. I wanted to be able to fix a problem that rules over every second of our lives.

Selfishly, I wanted to find a way that Caleb could actually be typical. I wanted to live in a home with the blinds open during the summer instead of having window-tinted windows with blinds closed and curtains over them to keep the temperature down. I wanted to be able to take Caleb to the grocery store at any time, not just at 8 AM when it’s still relatively cool.

I wanted to unlearn how to automatically, precisely tell the temperature of every room we walk into. I wanted for Caleb to be able to participate in Special Olympics, not sit out due to heat like he has for three years. I wanted to be able to go from early spring to mid-autumn without living in a constant state of gut-wrenching fear that Caleb could overheat. I wanted to taste a little bit of that remarkably normal life.

We were still driving when Caleb grew tired of the rap song and switched to the 80s channel which was playing Depeche Mode, another favorite of his.

“Yes!” he smiled, turning the song up.

I stole a glance at him as he was watching traffic go by. I wanted to reach out for his hand but he hates that so I don’t do it. My heart reached for his heart and I realized within that bond that this is our normal. It has been since he was born.

Nothing changed yesterday. I already know how to handle this particular overheating issue in a way that has kept him safe for 19 years.

Our normal, which is not anyone else’s normal, is still our normal. Everything was the same as when we woke up yesterday. There are no new routines or devices or medications to add to the daily choreography of caring for Caleb. Phew.

And for that, I am profoundly grateful.

The Bane and the Beauty of Social Media When Your Child Has Special Needs

We’ve all been there. You’re having a really difficult day so you go to Facebook or Instagram for a quick mental escape. At first it’s fun to scroll through and see what everyone is up to, but then it hits you.

Everyone looks so happy. Everyone is doing something you aren’t able to. Everyone looks carefree while you are trying to figure out how to get poop handprints off a wall. You’re trying to figure out how to make a nutritious meal out of Kraft Macaroni and Cheese and ramen. You look to the pile of laundry that is so old you need to add more laundry before you can even begin.

Here’s the thing: the pictures of the happy people are often illusions. They are often the one spot in a difficult day. The poster, special needs parent or not,  may be having just as challenging of a day as you but that one picture gives them hope to get through the rest of the day, so they post it.

When your child has special needs, Facebook envy is even more compelling. As I write this, there are gardeners loudly spreading mulch with various machines throughout the community in which we live. About every 180 seconds Caleb comes to me and says, “Man go home. I don’t like man.”

We have worked with his developmental pediatrician and his therapist to figure out why this bothers Caleb so. I think it’s a combination of fear (because the men wear masks), sound which hurts Caleb due to Hyperacusis, and disruption of his routine. Nothing helps and today will be a very long, very difficult day.

A few moments ago, Caleb left his room to come and tell me again how much he doesn’t like the man. I stopped typing, went to hug him and he pushed me away and began hitting himself in the forehead with both hands. Trained for years on how to handle this, I kept my face neutral and asked if I could do joint compressions on him, which he allowed. They calmed him for a moment but then he screamed, “Man go home!” and hit himself again before returning to his room.

This week a dear friend’s son, who is exactly my Caleb’s age, graduated from boot camp with the Marine Corps. My heart swells with pride for him and his family, remembering the little boy with chubby hands who ran through my house giggling in glee. I study this young man’s official Marine photo and marvel at all he has gone through in three months to earn this incredible honor. When my mind pipes up with “Caleb is still completely floored when he hears a lawnmower” I shush it and focus instead on the glowing family surrounding their amazing son.

I’ve written before how Caleb should be a sophomore in college now. It’s easy to forget this until I see pictures of his peers and all they are doing. I know I would have different worries if he was away and I remind myself of that often.

On one of the many special needs support groups I follow on Facebook, a mom wrote of going to a carnival with her family. Her four year-old daughter is on the autism spectrum and it was nothing short of a miracle that the family made it through the day without tantrums or meltdowns. The mom wrote of the victory of this moment. My immediate thought was that they probably passed families who looked at them with envy, wondering how they were able to have such well-behaved children.

We can’t know everything from looking at a picture. We can’t really know anything. We can’t know that perhaps the couple having the expensive meal is drowning in debt. We can’t know that the happy-looking family on vacation is dealing with untold stress that they keep to themselves. We can’t know, so what good does it do to think beyond the picture?

Moses, Caleb’s favorite Bible dude, had it right when he brought God’s Commandments down from Mount Sinai. All of the Commandments are sound, but “You shall not covet anything of your neighbors” is particularly applicable today.

Parents of children with special needs are often so broken from years of diagnoses, doctor visits, sad school reports, exclusion from social events and even more dire diagnoses that we are living below the surface. I had a physical therapist tell me that even my breathing is affected—it’s shallow because I am in a constant state of fight or flight. Like today, do I fight Caleb’s intense fear of the noises outside and try to help him through it, or do we take flight and escape the sounds, only to be 100% committed to do that every time there is work in our neighborhood?

It is so, so hard, believe me, I know, to stand our ground and try to work through difficulties. It’s exhausting and it draws upon resources that are already depleted. If looking at photos on Facebook or any other site pulls you down, maybe a sabbatical is needed. I have several friends who have tried this and felt great relief. We didn’t used to know so much about our friends. Perhaps when we are already feeling excluded and challenged by our lives, it’s best not to see what everyone else is presenting as their life.

On the other hand, I find great comfort in the support groups on Facebook. We share stories, offer comfort or solutions and just commiserate. Like I hope this blog does for anyone reading it, these groups remind us that even though we face inordinate challenges on a daily basis, we are not alone. We are never alone.

When your child has special needs, at whatever level along the endless spectrum of abilities, it’s natural to compare your life to others. My incredibly wise grandmother used to say: “If you’re going to be jealous of anything in anyone’s life, you have to be jealous of everything in their life.”

Her words echo in my head constantly and leave me able to say, with full sincerity: “If Caleb had to be born with all of these challenges, I am so grateful and privileged to be his mom.”

It is my hope that in peeking behind everything you may see on social media, you are able to say that too.