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.

An Open Letter of Gratitude to Tim Tebow for Another Night to Shine

According to an interview with Fox News, when Tim Tebow was 15 years old, he attended a school in the Philippines where he witnessed a young man being shunned from an event because his feet faced backwards. This inspired him to want to help those with special needs

Many well-meaning fifteen year-olds may have had a similar dream. But Tebow realized that dream, and created the Tim Tebow foundation which now hosts a Night to Shine where those with special needs are guests of honor, and everyone is treated like the king and queen of prom.

“It is about celebrating them, it is about loving them and letting them know that their lives matter and that they are special, and giving them the time of their life.”

Caleb was fortunate to attend last year’s event at one of 45 participating churches. Mr. Tebow even came to speak to remind the attendees that they are exactly as God created them, that they are kings and queens.

I watched as he made his way through the church, surrounded by at least eight bodyguards. Tebow’s cocoon was tight, until he spotted one of his honored guests. He broke from the huddle, made eye contact, had a real conversation and took as many selfies as the guest needed. He did this for several other guests, but not for one typical person, because they weren’t for whom the party was given.

As we were leaving that night, Caleb asked if he could go again next February. In awe of all that had happened, I told him I thought it must have been a one-time thing because who could possibly recreate such a night?

This year’s Night to Shine boasted over 200 host churches in 48 states and 8 countries. With over 70,000 volunteers to support over 30,000 guests, these numbers are greater than what Tebow’s former University of Florida football stadium The Swamp can handle at full attendance.

This year my friend Clare and I wanted to make Night to Shine even more special. Clare’s daughter Ashley and my Caleb have been boyfriend and girlfriend for over 10 years. We wanted to treat Night to Shine as the Oscars/Emmy/Grammy night that it is for our kids who don’t usually get to attend anything like it.

Caleb met his precious girlfriend Ashley in August, 2005 when we moved to a new state and he started a new school. When he walked in the door after school that day I said, “Hey, honey, how was school?” With dazed eyes and a permanent grin, he replied, “Ashley.”

At Caleb’s birthday party soon after, Caleb met Ashley at the door, gently took her hand and led her to his table. Ashley has Angelman Syndrome and communicates mostly through sign language, which Caleb doesn’t fully understand, but she and Caleb have quite literally created their own language. Clare and I watch, hushed, as these two stare into each other’s eyes, smile, nod and have the most wonderful conversations.

Ashley came to visit when Caleb broke his femur in 2006 and had to miss three months of school. They would sit on the couch or swim in the pool (always get a waterproof cast). Ashley and her family came to our home for Halloween parties, and we spent lots of birthdays at their home. We just love this family.

Two more moves were in our future, but almost every day, Caleb would ask about Ashley. I have pictures of her in his room and in our hallway. When Caleb was so blessed to be awarded a Make A Wish trip in 2014, Ashley and Clare came. That was the last time we had seen them.

This year, we discovered that Grace at Fort Clarke United Methodist Church in Gainesville, Florida was hosting Night to Shine. Ashley’s family and I decided we could meet there and give the kids a prom they would never forget. I explained the situation to the church, and their amazing Pastor Rick Thompson and his extraordinary wife Lara signed up to be Caleb and Ashley’s buddies for the evening.

Upon arrival, the guests were checked in, given a goody bag, then crowned with gold king’s crowns for the young men and beautiful tiaras for the young women. They were given gorgeous white corsages and boutonnières and led down an actual red carpet to a room festooned with blue, silver and white balloons, soft lighting and fun music playing at a volume that would not agitate those with sensory disorders. This incredible church had made up cards for each table to help their nonverbal guests communicate their wants and needs.

Secure in the marvelous care that Rick and Lara were providing our kids; Clare and I were led down a hall and told a caregiver’s dinner was being given upstairs. On the way, another person stepped out of a room to inform us that there were 10-minute massages being offered for parents. One quick look at each other and we bee-lined into special massage chairs and escaped for 10 glorious minutes. To my knowledge, last year’s event didn’t offer caregiver treats like the meal, massages and even a manicure table. This year’s event made all of us parents feel like we could take a breath, relax and enjoy a wonderful dinner. This may not sound like much to some, but trust me, to those of us who rarely have a night out, this delicious meal was an indulgence.

While dining, so many delightful volunteers brought us sweet tea refills and desserts. We talked with other special needs parents, which were easy conversations because we all speak the same language. Our most repeated refrain was “Isn’t this wonderful?”

In addition to a lively dance floor, there was a karaoke room and a limo which offered rides around the beautiful church campus. Caleb and Ashley partook of two rides, beaming and giggling like any other prom attendees.

Aside from every sparkling detail of this beautiful prom for the most beautiful people, Night to Shine gifted me, as Caleb’s mom, with memories that pierce my heart with their sweetness. When I was helping Caleb dress, I was buttoning his dress shirt and I swear I heard a camera click in our empty hotel room. This is what a typical mom might do with her typical son. When I adjusted his tie (pre-formed for us by my daughter Sophie’s wonderful boyfriend Al a few weeks before), I thought I heard another click. Moments I thought had passed me by swooped into that simple hotel room and gave me the gift of something I thought I would never have.

When Caleb and Ashley saw each other for the first time in the hotel lobby, they broke out in the widest smiles, which made Clare and I beam like any other moms on prom night.

“You look beautiful,” Caleb whispered, taking Ashley’s hand in his.

Clare and I talked on the short car drive to Grace at Fort Clarke UMC, while Caleb and Ashley whispered together in the back seat. So many parents take these moments for granted. For Clare, myself and all of the other parents of the over 30,000 attendees, we have only gratitude to offer. For one night, our treasured children were celebrated like royalty. They were able to dance in a room filled with so much joy it was like a cloud, weaving in and out among the dancers.

Tim Tebow states it best in his mission statement on his website Tim Tebow Foundation:

“To bring Faith, Hope and Love to those needing a brighter day in their darkest hour of need. The Foundation utilizes the public platform that God has blessed Tim Tebow with to inspire and make a difference in people’s lives throughout the world.”

You, dear sir, have given a very bright day that we special needs parents, who are often overloaded, discouraged and defeated can remember with a smile. Sometimes one smile is all we need to get through whatever we are facing. Thank you.

This blog is lovingly dedicated to Mr. Bob Dauchy, who spent his life bringing others so much joy and has been taken from us way too soon.

A Reminder to All Parents of Kids With Special Needs That You Are Not Alone

In 1997, when Caleb was about six months old and had just undergone his second heart surgery, I decided to attend a support group for special needs moms. The first speaker was the mother of a 19 year-old son with Down Syndrome. She stood behind the podium, tightly gripping the edges. Anger creased her face before she spoke her first sentence.

“People keep telling me that I got my son because I’m such a good person,” she began. “If this is what you get for being good, then next time I’m coming back as a bitch.”

The room hushed in a communal breath. I have thought of that woman so many times. That cold night in 1997, she frightened me. I ashamedly thought she must not love her child, certainly not as much as I loved the sweet little bundle I was missing as I sat in that conference room. Now I know better.

That woman was dealing with the cumulative effects of caring for a critically ill child. It had been 19 years of hospitals, IEPs, sleepless nights, exclusion and isolation. It had been 19 years of pouring every drop of her love into every breath her child took. It had been 19 years of living with a broken dream, even if she didn’t realize that.

We all have dreams for our lives. For some it’s a happy marriage, for others a fulfilling, satisfying career. The truly brave shoot for both. Often built into those dreams is the assumption of healthy children. How many times have you heard “We don’t care if it’s a boy or a girl, as long as it’s healthy.”

What if it’s not?

I’ve said this before, but there are more individuals with special needs living now than at any point in the past. Medical advances have far surpassed community and education needs, let alone the financial challenges of raising a child who needs to be supported from every angle.

I wish Doctor Who’s Tardis could land in my front yard and take me back to that room in 1997 so I could hug that woman. I wish I could tell her I understand and that she’s not alone. I wish I could tell her to seek God’s grace in her darkest moments because I know there were so, so many.

Just last week in a neighboring county, there was yet another story of a mother with an adult daughter with special needs. The mother was elderly and feared for who would care for her daughter when she died, so she attempted to kill her daughter and then herself. This happens way too often. Thankfully the plan was interrupted and her daughter is fine, although she is now without her mother who is in jail. This story speaks to the deep well of fear that so many of us live with, about what will happen to this precious soul we have loved. We have cared for them through the hospital visits, the IEPs, the sleepless nights, the exclusion and isolation. It’s hard to imagine who will provide that level of care when we are gone.

The words of that woman from the meeting have hung over me in ghostly vapor for my own 19 years. She was part of the inspiration to write this blog, to reach out to others who are worn down. Other people’s misguided words had given her the thought that she was being punished for being good. It was pain heaped on top of pain.

Last night I had the privilege of watching the movie adaptation of Don Piper’s nonfiction book 90 Minutes in Heaven. I won’t spoil it for you, but the book jacket will tell you that in 1989 he was in a horrific automobile accident and declared dead for 90 minutes, during which time he went to heaven, only to return to a broken body and months of soul-testing recovery.

Part of Mr. Piper’s recovery was a tortuous device called an Ilizarov frame which is designed to help pieces of bone grow together in an effort to fill in the empty space created by trauma. The device is simultaneously a miracle and evil. Regrowing bone is so excruciating that we don’t have a word for that level of pain. It takes almost no imagination to completely empathize with the depression that swirled around Mr. Piper during his recovery.

In one of the final scenes of the movie, I finally saw the closed parentheses of that woman’s statement from so many years ago. Don Piper spots another person in a crowd who was wearing an Ilizarov frame. He crosses the crowd to tell the young man, “Well, that really hurts, doesn’t it?”

The young man replies, “Yeah. It hurts very much.”

Mr. Piper responds, “Yeah, I know. Believe me, I know.”

In the film, the young man recoils at first from Mr. Piper. Then he looks cynical. Then Mr. Piper explains that he was in the same device for eleven months.

“It’s horrible. It’s just horrible. It’s awful.”

“Nobody ever understands,” the young man says.

“They can’t. It’s not something you can talk about and have anyone understand your pain.”

They introduce themselves and Mr. Piper says, “You’ve just met someone who understands.”

That is what Neverland is. This is the loving response to that woman’s anguish that she was being punished for being good. We are all in the same spot. We all live a pain that no one outside can ever fully understand.

Yet I would cross a room for you and I know you would cross a room for me.

Let’s look at parenting our wondrous, special needs children not as a punishment or reward. Let’s accept that God chose a reason we aren’t able to understand. In preparation, he gave us others along our journey. We can find each other and simply say, “Believe me, I know.”

If you’ve read my bio, you know that Caleb is not actually my son’s name. He can’t consent to my writing about him so it’s not ethical for me to use his birth name. I chose the name Caleb because after 40 years of wandering in the desert, out of all of the Israelites, only Caleb and Joshua actually saw the promised land. I know that my son will stand proudly in the promised land one day. Caleb is unaware that I even write about him but after I chose this name for him, his favorite prayer partner became Moses, which is beautiful in a way that only Caleb could create.

Caleb is the hero in this tale. He is the one who has overcome and continues to overcome so many obstacles that would truly floor almost anyone else.

Just this week, my sweet giant of a boy needed to have a sedated cardiac MRI. Something is going on that routine testing is not able to tell so his cardiologist ordered this test. What should have been a 45 minute exam swelled to well over two hours. Caleb was allergic to the Tegaderm holding the IV in place. Several other medical missteps occurred which I was fortunately able to address and redirect. I know I was annoying to the doctors and nurses but two of the missteps literally could have killed Caleb so I am completely unapologetic.

After the exam, Caleb was moved to a recovery room while we waited for him to wake up. I was stroking his hair and telling him what a great job he did. Soon his eyes fluttered and he looked right at me.

“Hi, Mom. What’s for lunch?”

When this life as Caleb’s mom becomes overwhelming, I need to stop and remind myself that Caleb is doing great. He’s happy and he loves the life I’ve helped to create for him. He trusts that God is with him and that his needs will be met.

I’m the one who needs to learn from Caleb. I need to model my choices on those that he makes. I need to trust that God loves Caleb even more than I do and that he will watch over everything for this amazing young man.

In the meantime, anyone out there who is feeling like they are on the other side of the promised land, remember this: we are all here in this virtual version of Neverland. We can support each other online and through prayer. We don’t need to feel so alone.

My favorite quote from the book 90 Minutes in Heaven is this: “Sharing my experiences is my way of crying with others in pain.”

That’s it. Let’s not be isolated and angry and scared. Let’s share what we go through and cry together and work through that pain. Like the great Don Piper, let’s be here for each other.

If we meet others who are in anguish like that hurting woman in 1997, let’s simply say, “That really hurts, doesn’t it? Believe me, I know.”