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.

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Even at Your Most Stressed, Gravity Can Be Your Friend

falling-drops-1185825-1600x1200This past weekend I had the enormous privilege of watching a glass blower at a renaissance festival. Even in the sweltering heat, which normally sends me to the snow cone stand, I couldn’t drag myself away from his presentation in front of a very, very hot oven. Entranced, I listened intently to every step of his process and I found myself floored by one of his tools. Gravity.

I watched as the glassblower took molten glass out of one oven, rolled it, then collected colored bits to swirl in the glass. He put it into another oven to let it stretch, then, after several of these processes, he simply tilted his stainless steel pole down to let gravity do the work. Gravity helped create the most beautiful mug I have ever seen.

Since I’ve been a special needs mom for almost 20 years, my body is screaming at me to reduce the stress that comes from such a long struggle. In only the last two years, I have had to have spinal surgery to replace discs that just vanished. I’ve had pneumonia twice, torn a ligament in my leg, dealt with painful neuropathy from the disc pain, and still had a nasty cornucopia of other ailments too annoying to list here.

I share this because any of these illnesses could impact my ability to take care of my sweet Caleb, who depends on me for everything from wiping his bottom, to brushing his teeth, to every other sort of physical help you can imagine. I need to be well and strong to continue to care for him.

After exhausting most of Western medicine’s advice and treatment, I decided to explore other methods of healing. My first stop is always to my regular physician but I augment his treatments with essential oils, yoga (well, regular stretching because I am just not that bendy) and a new favorite, meditation. In my meditation, I connect directly to God—it’s deep prayer in a way I’ve never experienced before. One of my guided meditations tells me to sink into the pull of gravity.

I’ve been fighting gravity forever. As a child, I was always jumping on something, trying to get air between me and the floor. As a high schooler, I ran track, always trying to get my knees to fly one inch higher to widen my stride. After I hit 30 I began to use every possible wrinkle cream, looking to fight gravity’s effect on my face. I lift weights. I exercise. I do everything I can to combat gravity.

What if gravity can be a tool? What if we stop fighting it so much and learn to lean into it like a comforting, constant presence?

As special needs parents, we often find ourselves fighting against accepting a new diagnosis. We fight against that one relative who insists, “I was just like him. He’ll grow out of it.” We fight against school districts that suddenly decide special ed classes should be populated by geographical constructs rather than the need of the students to be grouped by their levels of ability. We fight against strangers who whisper or point or laugh when our child behaves in a way they find entertaining.

We fight and fight and fight.

I used to take boxing fitness classes. One thing my teacher drilled into us was that a missed punch takes much more energy than a punch that makes contact. She trained us to never miss a punch. When we’re fighting in our everyday lives, we need to consider whether that punch will land. Will our one punch make a difference or do we need to rally others to join us before we even pull back our arm?

If we’re going to fight, let’s make it count, but if our fight won’t make any difference at all, perhaps we should just keep our hands down. None of us can afford to be exhausted by throwing missed punches.

In an effort to take some of the fight out of my existence, I find myself setting my feet together on the floor and submitting to the comfort of gravity. The other day I found a flower on the sidewalk and I lifted it, then gently let go to see it fall, just like I knew it would.

We are inundated with the need to fight so many times on any given day. The call to fight often comes just when we are having a good moment, when we take a breath and feel normal for just half a second. Then our kid falls or begins to self-injure or becomes upset that a new car is parked on the street. Immediately we are launched into Mama Bear mode and all peace is shattered.

If a man can harness the power of gravity to create delicate, swirly, colorful blown glass, then maybe we can use gravity to find beauty too. In the midst of your child’s guttural screams, put your feet down. Gravity is there. When your child just won’t stop shaking his foot and tapping his hand at a speed faster than a hummingbird, look around you at the world and all the things gravity is holding in place.

At the end of a long day that has left you almost unable to crawl into bed, crawl in and revel in the gravity that pulls you to the bed. Stop fighting. Relax into it, and you will sleep more soundly.

The notion of gravity isn’t new (nods to Mr. Newton) but perhaps we can change our perspective of it and allow gravity to be a tool that can help us, instead of something that is always pulling us down.

We already have enough of those.

In moments where everything feels out of control, we can take a deep breath and remind ourselves that gravity has us firmly rooted to the ground. I know I haven’t thought this much about gravity since George Clooney and Sandra Bullock forced me to, but now that I am, I find it can be a great comfort in the midst of chaos, when nothing else around me is giving me anything close to comfort.

By changing our perspective of gravity being one more thing to fight, we can choose to see it as something that can create peace and even beauty. We can let go and know that gravity can be a help instead of something to always battle.

As Forrest Gump said, “That’s good. One less thing.”

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.

We Need to Change How We Treat Anyone With a Disability

Last week one of the American presidential hopefuls publicly mocked Serge F. Kovaleski, a NewYork Times reporter who, despite a diagnosis of arthrogryposis which restricts his joint function, has made a career at one of the top newspapers in the world. I’m not a fan of anything this presidential hopeful says. I find him racist, misogynistic, arrogant, and worst, of all, uninformed. This latest action upset me deeply, on behalf of the reporter and all of the other disabled people in the world.

My mind works like molasses. I remember reading my favorite Little House on the Prairie book where Laura talked about pouring molasses on snow and waiting while it became a sweet treat. Even at the age of eight years old, I remember thinking: that’s how long it takes me to process anything. My thoughts are molasses, slowly seeping through the snow until they are absorbed. It’s still the same.

So it’s taken me a few days to examine this latest buffoonish action. It’s taken me a few days to build up my heart’s suit of armor to watch the endless video clips of the exchange. And then it took much longer for the emotions to percolate from the place where they normally securely reside securely deep, deep in my well-protected heart.

From the day my precious son Caleb was born in 1996, there have been whispers. There have been curious stares. There have been unasked questions in people’s eyes about whether, perhaps, I caused my child’s disability. In the case of 22Q Deletion Syndrome, neither I nor his father caused the genetic blip. But I have come to believe that even if we had, it wouldn’t make a difference. Parents of a child with any disability don’t need any more emotional garbage than we already heap upon ourselves.

As a young child in the 1970s, when I wasn’t pouring through the Little House series, I remember very few instances where I saw anyone with a disability out in public. There was a little boy in a drug store who I unforgivingly followed from aisle to aisle, trying to figure out what made him different. There was a classmate whose brother had autism—she rarely had friends over because, well, just because. There was a neighbor down the street whose brother had gone from genius-level to mentally retarded because his parents had given him a new drug to stop bedwetting.

Today there are more people living with special needs than at any other time. We all need to change how we treat them.

My molasses mind is also not the best at memory. I pray that I never acted cruelly to anyone who was different. I pray that I never called anyone the R-word. I pray that, aside from that young man I stared at, I didn’t make any other parent or child feel even more exposed than they already felt.

But I’m not perfect, so I pray for forgiveness if I did do any of these things. As my daughter Sophie and I have said so many times, I hope I would not act like so many of the people we have encountered in Caleb’s life who have been cruel. But without Caleb I will never know for sure.

The main reason I write this blog is so other parents like me realize that they are not alone. Sometimes knowing that has been the sole reason I could get through a day. The other reason I write this is to give a glimpse to those who don’t have a special needs child. I want everyone to know that we parents of special kiddoes love our children as much as they love their children. We don’t see disability when we look in their eyes—we see our babies and the love is just as powerful and soul-soaking as the love any parent feels for their child.

When viewed through this prism, I hope that typical parents may choose to not stare when one of our special kids acts up in the grocery store. Or when they walk through the hallway at school. Even if it’s a typical child having a tantrum, it does no good to stare or whisper. We’ve all been there, so either smile sympathetically or walk away.

So much awareness has flooded the culture that I really hoped we were making strides at accepting everyone regardless of anything that might make them different.

Then this man not only called out the reporter, he also made mocking hand gestures. He altered his voice. He contorted his face. The man he so callously and ruthlessly mocked was so high-functioning that he became a reporter. He deserves infinite respect, not derision, and certainly not condescension from someone who is seeking to be the leader of one of the most powerful nations on the planet.

Like I said, my brain functions like molasses sinking into snow. It took me three full days to understand why this event upset me so deeply. It took days for me to burrow into my soul, find the thorn of insult and, pull it out and examine it in bright sunlight.

I learned that what hurt the most was the knowledge that this man’s view of a man with physical struggles was not unique to him. There are ignorant, uneducated and cruel people out there who will judge another living, breathing human being based on their differences. These shallow beings want to reduce my son and anyone who is the slightest bit different to an inferior species.

In college, I took two courses on the Holocaust. I studied slavery in America and the civil rights movement. I studied domestic abuse. In my continuing studies, I’ve listened to and read stories from gay and transgendered individuals. One consistent theme in all of those studies was man’s inhumanity to man. I am constantly floored by how deplorable we can be to each other. The underlying theme, weighed down by shame like a broken muffler dragging underneath a car, is the immense hurt that people can inflict upon their very own kind. Those classes changed me and gave me a soft heart toward anyone who is belittled or badgered or excluded for being different.

I am not claiming to be more enlightened or more sympathetic than anyone else. I’m simply the mom of an extraordinary young man who was born missing a tiny piece of his 22nd chromosome. He did nothing to cause this. He knows no other reality. I am awed by his mental, physical and emotional strength every single day.

I am disgusted that anyone, presidential hopeful or not, could not only not value others but also degrade those who deserve enormous respect. I am reminded that there are horrible people who pride themselves for making snap judgements and view themselves as somehow above anyone else. There are people who truly believe they are better than anyone else.

I am profoundly grateful that my son is pure, undiluted light. My son is strong. He’s the strongest, funniest, most introspective man I’ve ever known. He has had to learn to live in our world, when his world makes so much more sense to him. He’s overcome challenges and trials that would fell a weaker person. Everyone who meets him is entranced by his smile and his deep grizzly bear giggle. I am fortunate to bask in the light of his soul.

People who choose to focus on anything any of us is missing have no understanding of all that we are. They are the ones who have the real handicap.

The Saddest Part of Being a Mom To a Young Adult With Autism

There is a very lonely part of being a mom to a young adult with autism that we don’t often talk about. I am very down as I write this and it is my hope that if you’re reading this, and you are also down, we will still be sad, but sad with company, which somehow makes it better.

Caleb has been struggling with a few new things this school year. I am limited in how I can help him in so many ways. I don’t know everything that happens in a day, despite wonderful communication with his amazing teacher. Someone might look at Caleb wrong or a fellow student may bang a desk and send his day spiraling. The tiniest infraction that no one else caught can absolutely ruin his day.

Like many typical boys, Caleb doesn’t want to talk about what’s bothering him. He will hold it in for days, weeks, or longer, often divulging things to his marvelous therapist that happened a while back. His therapist and I will scratch our heads, wondering how awful it must be to have pain nestled like a thorn in your foot for months at a time. If it were a physical thorn, the damage could be as extreme as a gangrenous infection. I believe the emotional equivalent is just as devastating.

I can tell when Caleb’s suffering and I do all the things that worked with my 20 year-old typical daughter. They don’t work with Caleb. He barely tolerates touch on a good day, so offering him a hug when he’s upset is like offering someone hot coffee on 100 degree day. Blame his innate temperament, autism, being male—whatever. It all leaves him sad, angry or frustrated and it leaves me devastated.

One of the most difficult things special needs kids face as teenagers is that they have mental, physical and behavioral challenges and they are still physically teenagers. Even with awesome teachers, therapists and in Caleb’s case, a wonderfully supportive public high school, it’s still high school. High school is challenging to almost everyone—I can’t imagine how Caleb balances all of his regular challenges, plus hormones, plus being around other teenagers. It must be unbearable, and that is what I’m focusing on as I’m trying not to cry as I write this.

Every night at the same time, we eat dinner together. This means I prepare everything, cut it all up and serve it with his favorite plastic-handled spoon from when he was a toddler. Metal spoons aggravate him. Then, because Caleb is completely exhausted, I help him prepare for bed. This means crushing his nighttime meds and sprinkling them atop a shot glass full of chocolate milk so he can swallow them.

The next steps are washing his face, brushing his teeth, flossing them, applying an enamel-restoring rinse, then applying prescription acne medication and popping his retainer in his mouth. Then he selects one of his many books and we read a bed-time story. He will be 19 this month, but the story is his decision—he looks forward to it and if we have company over, he loves to have someone else share in this ritual. It’s almost always a happy occasion, with laughter and bonding and all the lovely things a good story can bring. We close with bedtime prayers, then I turn on his nightlight and quietly leave the room.

To someone who doesn’t have experience with autism or profound special needs, I can imagine that Caleb’s schedule reads like I am a controlling mom who won’t allow him to be independent. Nothing could be further from the truth. Over the years, I’ve worked with occupational therapists to help him gain independence, but the physicality and skills just aren’t there.

Caleb is blessed by a truly remarkable dentist who has treated him since he was two years old. A few years ago, she pulled me aside and asked if Caleb had been brushing his own teeth. When I answered that we were trying that, she gently told me that his teeth were being affected and I needed to perform his oral hygiene for him. I have received the same advice from other doctors about his basic hygiene.

So, back to the bedtime routine and what happened today. Caleb came home from school unusually tired. I asked him if he wanted to talk and he said, “Leave me alone.” That sounds harsh, but it’s actually the result of years of really hard work. When he was younger, he would hit himself in the face or scream or just run out of the room. When he says those words now, I understand and let him retreat.

In the last two years, Caleb has created a new sentence which he uses when he is particularly upset: “I be big boy.” This means he doesn’t want me to assist him in getting ready for bed or reading a story. It seems to me to be a form of self-punishment; he’s in pain which he doesn’t understand and he simultaneously somehow blames himself for the pain, so he takes away all nurturing. He takes away his favorite ritual.

I listen from another room as he brushes his teeth and puts in his retainer. This happens so rarely that I allow the slight disruption to his otherwise extensive hygiene. Something much deeper and very painful is happening for him and with all he has to deal with, I step back.

On nights where he’s partially upset but able to tolerate some of my attention, we get through all of the hygiene, but when we’re reading a story and I laugh, he will say, “Don’t look. Don’t smile.” I’m not sure what is going on when he says this, but it’s a boundary he has created and I respect it.

When Caleb says any of these statements, I quietly retreat and give him space because that is what he is telling me he needs. As I wrote above, I can’t imagine what one minute of Caleb’s world is like. His entire body hurts. His language tests around age five, but it is so disordered that many people can’t understand him. He lacks the basic ability to communicate. His heart doesn’t function properly. His balance is not good so every step takes meticulous planning. Gross and fine motor movements are difficult.

Caleb’s geneticist once told me that in Caleb’s brain, there are cul-de-sacs where healthy brains have freeways. This is a hallmark for 22Q Deletion Syndrome, but that doesn’t make it any easier for Caleb to live with. He has words, feelings, opinions, complaints, thoughts, daydreams, real dreams, cravings, longings, memories and hopes that can’t find their way out of what I know deep in my soul is a gorgeous mind. Everything gets stuck. He gets stuck.

After dinner tonight, Caleb stood up and said, “I be big boy.” It was an hour earlier than his already extremely early bedtime, but I said, “Okay. I love you.”

Fifteen minutes went by and I could hear him listening to something on his iPad. I stood outside his door and could tell from the space under the door that his overhead light was off and his nightlight was on. I hesitantly knocked three times, just like he likes.

“What?” he asked.

“Can I come in, sweetie?”

“No.”

And that was it. There was no screaming, no major blowup or incident. It was a quiet slice in a mama’s heart. I was standing on the other side of that door with a floppy metaphorical blanket of love that I wanted to drape over his shoulders and he didn’t want it.

This is the silent pain that everyone who loves someone with autism quietly bears. The emotional skills we have spent a lifetime acquiring and perfecting fail us. Our children suffer. We suffer because they suffer.

And there is nothing anyone can do to fix it.