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.

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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.”

10 Tips For a More Peaceful Christmas With a Special Needs Child (or any child, really)

I remember when my now 19 year-old Caleb was a young boy and how difficult Christmas was for him. Everything changes on such a big holiday. There are different foods, sleep schedules are off, people are in and out of the house, you are in and out of different houses. It can be a very loud and confusing time for a child with sensory difficulties.

For a while I tried to do everything like a neurotypical family. I failed. This made me stressed out and both Caleb and his sister Sophie felt my stress, which made them stressed out. It was a cycle that left us all exhausted and ready for a wonderful day to be over.

Since that time, I have made some small changes that may help some of you in your own families, with someone with special needs or not.

  1. I know you hear this all the time, but try to keep things simple. Maybe this year you don’t need to wrap every outside surface with lights. When I can, I do, but I have let this go when things are challenging.
  2. Caleb was often confused by the conflicting images of Santa and Jesus at Christmas. We chose to focus on Jesus and have birthday cake complete with a candle for breakfast. This year I’m not able to make a cake so it will be a really fun Krispy Kreme donut. Will anyone even notice I didn’t spend an hour making the cake? I love family traditions so much, but sometimes they can be work that saps energy you need to lavish on your family. Caleb was just able to verbalize this year that Santa frightens him—he must have felt this way for a long time and just now gained the words to tell me. Trust your intuition with your child.
  3. In keeping with celebrating Jesus’ birthday, I borrowed something that Kathie Lee Gifford said in the 1990s. She said her kids got three gifts for Christmas because that’s all Jesus got and it’s his birthday. Bam. This not only keeps a budget in check, I have found that too many gifts overwhelm and exhaust Caleb. When gifts come in from sweet family members, I let him open them a few days before Christmas, one per day. Where a neurotypical kid loves the pile of wrappings and new toys around them, Caleb becomes so anxious. Spacing the toys out up helps him to appreciate them and maintain the sense of order so essential to his sense of calm.
  4. It took me years to learn this one: For young kids, assemble anything that needs assembling ahead of time and if it doesn’t need to be wrapped, stick a bow on it. I used to wait until Christmas Eve to get everything assembled because I didn’t want any surprises ruined. I remember one year when the kids were really little, I was up until 3:00 AM assembling Barbie’s Dream House. When the kids woke up a few hours later, I was so tired that I didn’t fully enjoy all of the excitement. If big items can’t be hidden, ask to store them at a friend’s house.
  5. When you can, wrap things in batches, so it’s not a marathon wrapping session the night before Christmas. A very good friend of mine who is the mom to five kids under age 10 told me she didn’t even wrap gifts—she bought big spools of different colored tulle and wrapped each child’s gift with in a different color. This is a gorgeous and simple way to keep things festive but not overwhelming for you.
  6. Choose music carefully. Caleb lives by a very specific sensory diet, which includes keeping sounds soothing and soft. Our favorite Christmas hymns are acoustic renditions from groups like Jars of Clay or our new favorite, Chris Tomlin’s Adore album. When more peppy pop songs come on with shouting snowmen or squealing chipmunks, Caleb retreats to his room. Beautiful, simple arrangements keep him in the room a little longer.
  7. Let go of the idea that the entire family needs to be together all day. If family members don’t understand this, quietly tell them it’s okay and walk away. Don’t apologize or make excuses. If you’re fine with it, those around you will be too. Kids with special needs have so much to deal with and they often need to retreat for a bit to be able to process everything. Give them their space.
  8. For years I kept asking Caleb to help decorate the tree. I bought him new Disney ornaments every year to encourage his participation. When he developed the language, he told me he liked the Christmas tree but not decorating it. He likes the egg nog and spice cookies so he comes for that part and then goes to his room while Sophie and I finish the tree. We all have this image of perfect family moments. There can still be beautiful moments but sometimes the picture needs adjusting.
  9. As much as possible, try to keep the big routines in place. In our home, sleep is the best medicine for Caleb. If he stays up too late, he wakes up several hours early, which only compounds the problem. We have to say no to some events but it is a small price to pay to help Caleb be the wonderful, well-behaved kid that he is.
  10. Listen to your child. One of our favorite things to do when my kids were little was to drive through professional holiday light displays. For whatever reason, this was distressing to Caleb. He likes going through neighborhoods to see lights so we do that instead. We would hire a sitter or leave Caleb with his granny while the rest of us went to the professional display.

It is so important to not let your life be totally defined by a child with special needs. There are some things they will need to learn how to handle. A family with no options for childcare would have to take that child along with them to a light show, even if they didn’t like it. At the same time, everything is magnified at Christmas. When viewed through the eyes of a child with sensory issues, it can be overwhelming to the point that it ruins their day, and in turn, ruin the day of other members of the family.

Balance is essential when dealing with anyone with special needs. If there’s a party at night, keep the day quiet and restful. Cut out things that don’t serve you anymore. Reframe your ideas of what makes Christmas so special.

Try not to feel compelled to compete with Facebook posts of perfect outings or perfectly decorated trees. So often, the pictures represent the one second the entire day that everyone was smiling. Everyone is fighting some kind of battle and none of us are immune. Not every family has a child with special needs, but there are all sorts of things that can disrupt a family. We don’t help each other by competing or comparing.

Always, particularly during a hectic time, guard your family and provide the structure your child needs. When lovely moments happen, stop and take them in. Don’t wait for the next one instead of enjoying the one happening now.

I wish you all a very merry and peaceful Christmas.

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.

There Really Are Angels Among Us–We Need to Allow Ourselves to Let Them Help

One of my favorite Bible quotes is from Psalm 103:20: “Praise the Lord, you his angels, you mighty ones who do his bidding, who obey his word.” One of my favorite lines from a worship hymn is from Chris Tomlin’s Whom Shall I Fear (The God of Angel Armies): “I know who goes before me; I know who stands behind; the God of Angel Armies is always by my side.”

I need to preface today’s blog with some information on me. I’m 46 years old but somehow have such debilitating arthritis in my neck that I need a neurosurgeon to remove one ruptured disc that is leaking into my spinal cord and also the one above it, which is basically dust at this point. Somewhere between them is a bone spur.

I haven’t been able to feel most of my right arm and hand since January, which makes caring for Caleb excruciating at times. Surgery is in a few weeks, but until then, every movement is pain. I’m tired all the time. I hate pain meds and even though I specified non-narcotic so I’m always able to care for Caleb, they make me feel, to quote my favorite Friend, Phoebe, floopy.

Last Monday was Caleb’s 19th birthday. He spent Saturday with his dad, so I took the opportunity to walk around our gorgeous downtown with my daughter Sophie and her sweet boyfriend Al. We didn’t get very far before both of my legs went numb and tingly. This had never happened before so we sat down and waited for it to pass. When I called my neurosurgeon on Monday, I was told this was the bone spur acting up. I’m not quite on bed rest but all of my activities need to be extremely limited because if I fall, I will need a completely different kind of surgery.

When I picked Caleb up on Sunday, I was super excited because I had rented a red SUV for two days. Whenever Caleb meets someone new, he always asks: “When is your birthday? What color car do you have? What kind?” He has hundreds of car brochures neatly filed in three bookcases in his room. On his walls, he has old-fashioned tin car signs and a brand-new Ford poster his grandpa gave him for his birthday. He can identify any car by their symbol.

Caleb was a little in shock about the car but then he began his happy growl. It’s a deep laugh, almost a purr, that crescendos into a high giggle. It is one of my very favorite sounds. He talked the whole way home about different parts of the car that he liked. He begged me to buy one in the future. Mostly he was just so happy sitting in the car.

So, here’s where the angel part comes in. On Monday morning at 10:15 I was supposed to arrive in Caleb’s class with cupcakes for everyone. I usually bake them, but with all my physical limitations, I ordered them from my favorite grocery store, Publix. I should mention one of the worst parts of not feeling my hand is that I’m clumsy. Exceedingly clumsy.

I went to the bakery, picked up two layers of confetti-covered cupcakes perfectly packaged in hard plastic so they each had their own little space. I couldn’t wait for Caleb to see them. I paid and made my way out to the parking lot. I was looking for my regular car, and holding the keys for that car in my hand. Duh. I put them back into my purse, then, carefully balancing the cupcakes, I searched through my purse to find the rental car key. I found it but I had to look at it to remember which button unlocked the car.

Door open, I set down the vanilla tier on the floor of the front seat. Because I can’t feel my hand, the keys fell on the ground so I stooped to get them and in the process dropped the chocolate tier of cupcakes. They landed with a soft thud. Not one of them managed to stay in their happy little cubicle.

I wasn’t able to form a thought. I wasn’t able to cry. I was staring at the mess, calculating that I needed to leave right that minute to get to Caleb’s class on time. I just kept staring.

That’s when I heard the sweetest voice ask from somewhere behind me, “Do you need help?”

My knee-jerk reaction to this question is always, “No, thanks, I got it.” But as I stared at those cupcakes I knew I didn’t have it.

I turned back to see a woman with a confident smile. I trusted her right away and I knew she could help me.

“I don’t know what to do,” I said. “I can’t feel my hand, that’s why I dropped them. I need surgery. These are for my son with special needs who turns 19 today. I have to get them there.” (Sophie will back me up here; I always overshare on first meetings)

“Let’s take them back inside. They’ll re-frost them and you’ll be on your way.”

“I’m Kate,” I said.

“I’m Kelly,” she said, and pulled me into a hug.

“Why don’t I carry those?” she asked. I swear, her eyes sparkled and it was like there was this heavenly glow around her. She was just that kind. In my cynical world-view I can only see her as an angel, though I know she’s real because we emailed and we have plans to meet.

Here’s where the story turns. Kelly politely explained what happened to the woman at the bakery. The poor decorator had just gone on break but they went and found her and she immediately fixed all of the cupcakes.

While we were waiting, Kelly told me that her son has high-functioning autism. She told me she’d been having trouble finding services for him. This is a subject I can discuss in my sleep so I instantly changed from the pathetic woman who dropped the cupcakes in the parking lot into someone who could help this darling woman. I rattled off a few agencies and doctors names that were new to her.

By then, the cupcakes were finished. We thanked the decorator profusely and Kelly wisely carried the cupcakes to my car. Then she said, “Hold on,” and went to her car to get a bag we could set the cupcakes in so I could carry them to Caleb’s class without further calamity. Pre-injury me would have done the same thing, but I’m just not me right now. And that’s a great thing because if I had been the regular me I would never have met Kelly.

I turned to hug her again and thank her for saving the cupcakes. “You’re an angel,” I said. “God knew I needed you right then. Thank you so much.”

And she said, “No, you’re an angel to me. I’ve lived here about a year and haven’t found anyone who knows as much as you do.”

When Caleb was growing up, there were, and still are, many dark days. I often wished that I could meet someone who’d been there before, who could lead me out of the dark days. I wished there was an Angie’s List for special needs doctors and schools and therapists. Like any other businesses, there are good places and not so good places.

I am not saying I’m an angel in any way, shape or form. I am ridiculously human and I mess up all the time. But I do have some knowledge that I pray will help Kelly. And it is my sincere hope that those who read my blog, even if they’re really far away, will find hope and the courage to go through another day. If they can see that Caleb and I have made it this far, maybe we can leave behind enough breadcrumbs that they can follow us through the crazy forests of Neverland.