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.

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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.

The Not Quite Empty Nest When You Have a Young Adult With Special Needs

I haven’t posted in a while because, as I’ve written before, summer sucks about everything out of me. Caleb has had a great summer and is excited for school to start. So am I.

This week lots of my friends are posting about their oldest kid leaving for college. It’s a challenge for all parents. The little person you’ve known from birth is now flying off on their own, just as they should be, just as you raised them to do. It’s a phenomenal achievement for both kids and parents, but for parents it leaves a hole in the house. I often say about Sophie that when she leaves, she takes all the air and sunshine with her.

Sophie is a junior now and I should be used to her leaving, but when she left this week with her car heavy with almost everything she owns, I collapsed into a mess of tears. Sophie is smart, incisive, a great helper and one of the funniest people I’ve ever known. I miss everything about her.

Here’s where the not quite empty nest kicks in. For most of us parents with special needs kiddos, our kids will never leave the nest. I’ve talked with many older families over the years and in most of those cases, their special needs adult lives at home until a grave illness or death strikes one or more of the parents.

My goal is to let Caleb live with me for as long as he can. All the things I do to give him a happy life take a great toll on me, but I fully believe he deserves a happy life because he has been through so much. Life is incredibly challenging for him and it’s my duty to make his home life amazing. Plus, he’s a great and funny kid too.

Years ago, when Sophie and I first started talking about college, I realized that her leaving would hit me like an icy wind, reminding me that all is not normal in our family. As difficult as it is to say goodbye to your precious 18 year-old, when you have a dependent kid, it is a painful reminder that one will leave, but the other one never will.

It took me until Caleb was about four years old to fully understand just how challenging the world is for him. At any given time, he has at least 10 specialists who work to keep him healthy. Every visit with these wonderful providers serves to remind me that Caleb is not healthy. It took many more years to realize that Caleb would live with me forever.

As a parent, you work with your neurotypical child, helping to learn their letters, to complete mud replicas of Aztec villages, to practice whatever language they have chosen to study. You help them learn to swim and shuttle them all over the place for sports or music or debate clubs. All of these things, you hope, will prepare them for college. That’s the goal. It’s a natural expectation that your child will one day leave home and use all those skills to become a successful adult.

When your child has special needs, it’s a major upset to that expectation. Aside from missing Sophie, her leaving is also a stark reminder that the natural order has been disrupted. There are upsides to an empty nest, but we won’t experience them.

So, my fellow parents with a not quite empty nest, here’s what we need to do. First of all, it is vitally important that we grieve the loss of a normal transition to adulthood for our kids. You may not even realize that in the way-back of your mind you were still hoping your child might be able to be independent. For many people reading this, that is a reachable goal and I’m so, so happy for you. But for all the parents of amazing kids like Caleb, you have to acknowledge the grief so you can work through it.

I didn’t cry for so many years because I knew if I started, I wouldn’t be able to stop. We need to cry. That grief needs to come out or it will become toxic. As Sophie will tell you, now I cry at almost anything. Songs on the car radio. Commercials. Amazing performances on So You Think You Can Dance. I will tell you that being a crier is so much healthier than holding it all in.

The second thing we need to do is seek out day programs for our kids to attend when high school ends. Caleb has three more years and I’ve already started investigating. If I had the energy, I would write congress and lobby for them to provide extended schooling for our kids, which would be much cheaper than government-funded group homes. My energy stores are bankrupt right now, so I won’t be doing that.

The third thing we need to do is find something that we love to do. This one is really challenging for me because, at least during summer, we are stuck in the house all day because of the heat. So when Caleb wants time to himself, I read, watch tons of HGTV, play Fleetwood Mac on Pandora while I’m cooking. I burn candles after dinner because they just make me happy.

I’ve also found adult coloring books with stress-relieving patterns (there are lots to choose from on Amazon). Caleb and I color together while I play Lindsey Stirling on Pandora. It’s the ultimate in parallel play for him and it’s a great bonding activity for us.

We need to nourish our souls with joyful things so they don’t atrophy. Caregiving is enormously stressful and we need to replenish ourselves. If this sounds selfish to you, then consider it as strengthening your entire self so you are better able to take care of your child with special needs.

I know this will cause lots of eye-rolling but we need to eat healthy and exercise to keep ourselves healthy so we can live long and take care of our kids. I know this isn’t always realistic—so often, I feed Caleb his breakfast, give him his meds for the day and then have to rush out the door with only coffee for me. Just do your best. It’s better than not trying.

We also need to reach out. I don’t accept help easily, like so many parents. When I reach out, it’s to God in prayer. I find saying the Rosary enormously comforting. Sometimes all I can do is chant, “Help me. Help me.” I was doing this yesterday while driving with Caleb. I was in tears and trying to hide them because they upset him. We came upon an empty playground, got out and played for a few minutes. When we left, I was laughing. I got the help I prayed for.

I am not a model of all that I advise. I fall short all the time. I collapse a lot. I am extremely fortunate to have a large network of other moms of kids with special needs. We talk on the phone. A lot.

I wish every parent with a not-quite empty nest the best of luck in this painful transition. I wish that even if you can’t follow all of the advice above, that you try at least one. I wish we could have a worldwide virtual coffee date. I am open to other suggestions of how to cope with this stressful time. We need to lean on each other and learn from each other. That’s why my blog is called Neverland Without a GPS—we are in unchartered territory with no clue how to navigate it. But we’re here together.

helping hands

Overcoming the Crush of Paperwork When Your Kid has Special Needs

I just had to fill out some paperwork on Caleb and it literally sent me back to bed. At 10:30 AM.

The paperwork was simple enough—it’s an intake form for a summer speech and occupational therapy clinic. In total, it was six pages of questions about Caleb’s functioning at home. I know it will be valuable information to the therapists, and I am so grateful that they are so interested in helping Caleb gain independence and function. I am so grateful that he is able to attend this clinic. I am so grateful that there are amazing, giving, interested people who go to college and study how to help kids like Caleb and then make a career out of it. It’s an abundance of riches showered upon Caleb and, by extension, the rest of our family.

So why did it knock me out?

For six pages, I had to rate questions like: “My child accesses the sink and obtains all grooming supplies.” Caleb knows he has to brush his teeth, and he can move the brush around his mouth, but unless I go back over his work, his teeth are not adequately cleaned. 22Q kids have lots of dental problems so I need to navigate the Sonicare toothbrush around his mouth, floss his teeth and then brush his teeth with ACT Restore because he can’t swish and spit.

Another statement was: “My child chooses clothing that is appropriate for the time of day, season and occasion.” Caleb can dress himself with modifications like draw-string pants and pull-over tops. Without guidance he will choose flannel pajamas in 102 degree heat and a short-sleeved ventilated t-shirt on a 28 degree day. I never thought about him not being able to figure out what to wear based on the temperature. I had thought he was doing really well, but this questionnaire slapped me with the unwelcome realization of all he is unable to do.

At the end of the 20 or so minutes it took to complete it, I was exhausted. It’s taken me several hours to understand why. This is a huge improvement over when he was a very young child. Then, I would fill out this type of paperwork and spend the rest of the day exhausted. I  just kept going, never taking time to digest the toll it had taken. I don’t think I could afford to do that at the time. After over 18 years of practice, now I do take the time and allow myself to break down a bit. It sounds odd, but this is a present to myself.

These types of questionnaires (or IEP meetings or regular visits with the developmental pediatrician) are exhausting because they make me account for all the things Caleb can’t do. They remind me just how far we swing from the typical world. I usually go through a day performing the tasks of several adults in my care for Caleb. From showering him head-to-toe to preparing and cutting all of his food, to his bedtime story every night, I am on automatic pilot. It’s been so long that the only time I realize how much I do is when I catch strangers looking a bit too long as I tie his shoe in the supermarket or order for him off of the children’s menu. The world sees a 6’1” young man. I see a five year-old child.

I have several boxes filled with evaluations, questionnaires and IEPs from almost two decades of Caleb’s life. I know they are useful tools for all of the amazing people who teach and lead my son to the greatest independence he can obtain. When I hand them back to whoever requested them, a tiny chunk of my heart goes with them. Forced to evaluate what he can and can’t do, great volumes of my energy leave my body with each answer.

It’s taken me 18 and a half years to finally recognize this phenomenon. And it’s taken me that long to allow myself to feel the sadness, rest and recover after filling them out. I hope that moms of younger kids with special needs will read this and allow themselves the time to recuperate, instead of always pushing forward and always pushing through the pain. With all of the demands we face as caregivers, we need to care for ourselves in the same way we care for everyone else.

I have decided I will reframe all of these situations. Instead of letting them drain my energy, I am going to visualize myself giving energy to those who requested my answers. There is a huge difference between what is taken and what is given.

Caleb is all set up with a Disney movie in his room. I’ve got a date with a bowl of popcorn and my DVR.

Autism and the Terrible, Horrible, No Good, Very Bad Unexpected Anything

I wanted today’s blog to be all about the amazing, wonderful, spectacular Night To Shine Prom that Caleb attended on Friday night.  It was one of the most beautiful things I have ever witnessed.  Caleb and all the other attendees were ecstatic and I swear you could feel the joy that emanated from each of them.  The room actually glowed.

But autism has reared its ugly head once again.  That’s how it is.  You can have such great highs and then, sometimes only minutes later, they crash into a million trillion tiny sharp shards.

Caleb is absolutely obsessed with weather.  He checks his iTouch and my phone constantly, looking for the icons on the weather app.  He doesn’t understand that the icons represent really good guesses, not guarantees.  He can’t understand Fahrenheit or even the numbers, but those icons are crystal clear to him.

Particularly the one that shows snow.  Caleb hates snow.  He hates when school is cancelled for any reason.  He loves school—everything about it.  He hates when his routine is disrupted.  He hates when we are forced to stay in the house, even if we didn’t have plans to go anywhere.  Snow represents all of the things that cause him great distress.

We live in an area of the country that doesn’t receive much snow.  If I had to guess, there is maybe one storm a season.  We don’t have enough snow removal equipment in our town so if it snows, it stays on the roads, usually on top of an ice layer, until the weather warms enough to melt it.  I have lived all over this beautiful country, and I know how to drive safely in snow, but I won’t venture out on icy roads.

These are the conversations we have had today (there is no school today for President’s Day):

5:03 AM Caleb: “No snow today.”

Me: “Yes, Caleb, it will snow but we are safe in our home and I have fun things planned to do later.  Go back to bed.”

6:47 AM Caleb: “No snow today.”

Me: “Yes, Caleb, go back to bed.”

7:43 AM  Caleb: “No snow today.”

Me: “Go back to bed.”

8:17 AM Me: “What would you like for breakfast?”

Caleb: “No breakfast. No snow today.”

Me: “How about waffles?”

Caleb: “No snow today.  School tomorrow.”

Me: “I don’t know if you will have school tomorrow.  It depends on how much snow we

get.”

Caleb: “I don’t like snow.”

Me: “I know, honey, but there is nothing we can do about it.”

I will skip the rest of the morning, because these conversations were repeated about three times each hour.  At lunchtime, because the snow hadn’t started, I took him to his favorite restaurant.  We drove down his favorite road.  I told him we could spend the afternoon baking chocolate chip cookies and watching his favorite movies.

It didn’t matter.

As soon as he finished his lunch, it began again:

1:07 Caleb: “No snow today.  I don’t like snow.  I want school tomorrow.”

Me: “I know, honey, I wish you could have school tomorrow.”

Caleb: “I hate snow.”

Me: “I know you do, honey, I’m sorry.”

Caleb: “How many snow do we have?” (this means “how many days do I have to put up with this?”).

I work very hard to always be truthful with Caleb.  There is little in the world he can trust—he doesn’t know when the next health challenge will strike, he can’t understand so many things and he can’t really control anything in his own life.  So my answers to him are heavily weighted with truth.

Me: “Honey, I don’t know.  Maybe two days.  Maybe three.”

Caleb: “I want to hit snow.  Snow go home.”

I remember when my daughter was little and she would hurt herself, maybe fall and skin her knee or bang her shin on playground equipment.  We would rush together, and I would pick her up and smooth her hair, telling her it was okay.  She would look me in the eye, take a deep breath, and stop crying, then wriggle out of my arms to get back to playing.  I ache to be able to comfort Caleb in that way.  If I could, I would commission Spider-Man to shoot his webs all over the clouds and hold in all the snow.

Here’s the thing: I love snow days (and I know this is annoying to people who have had over eight feet of it so far this year).  They are so rare here.  Snow days, to me, are pajama days with hot cocoa, board games, and movies in front of the fireplace (not all at once of course).  I love the soft pelting of snow against the windows.  I love the complete change of the topography of my street.  I love the hush and peace and quiet.

But for now, peace and quiet are not to be.  Autism robs the families it strikes of peace and quiet.  It imprisons those who suffer with it, and by extension it imprisons the families.  I love my son with every cell, every single fiber of my being, but I hate the autism that creates anxiety and pain for him.  I hate the haunting distance it creates between those who love the affected and the affected themselves.

Sometimes I get a glimpse of who Caleb might have been without autism.  It’s a millisecond of clarity, of connection, of which Caleb is usually incapable.  I don’t love that boy any more than the one I am privileged to mother, but I wish I could talk to him, just for a minute, and ask him how I can comfort his doppleganger.  I want to ask him what he needs from me.  I want to learn how to calm him.  I want to ask him if he’s happy.  I want to learn more about the soul who lives within the impenetrable glass box of autism.

For now, I just try to gather the strength to answer the same question, in all its variations, multiple times a day.  For now I give him comfort in the only way I know how.  For now I try to make his life as peaceful as it can be.

I will do the same thing tomorrow.