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.

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.

What Caleb Has Taught Me About Being a Mom

With Mother’s Day a few short days away, I have been wondering all week what I should write about how to be a Mom to a young man like Caleb. I was humbled when I realized I know nothing about this—Caleb has taught me everything I know.

I’ve written before about the expectations I had when my son was born. It was all about my expectations for him. I dreamed of shuttling him to various sports (I don’t even like sports so I don’t know why I even thought this). I dreamed of his high school graduation day (when he would undoubtedly give a valedictorian speech) and his college graduation (summa cum laude, of course) and his wedding and then whatever fabulous job he would land.

None of that was about him. All of that was about me bragging about what an amazing job I had done raising him.

That is not what motherhood is about. Caleb has been extremely patient in teaching me how to be a proper mother.

The day Caleb was born he was taken from the hospital by ambulance to another state so they could perform open-heart surgery. I managed to downplay this event in my head, telling myself he could still be a world-class athlete. A few days later, when I was allowed to leave my hospital and join my baby, I lost my breath when I saw him hooked up to so many machines.

He was laying on his back, a board taped to his hand so he wouldn’t pull out the IV. He was naked but for a diaper and wore a permanent grimace. I begged to hold him or cover him with a blanket but the Neonatal Intensive Care Unit has very specific rules and I wasn’t allowed to at that time.

As a four-day old infant, Caleb taught me about strength.

The day of Caleb’s open-heart surgery, I was terrified, but then I did something unexpected. I was in an empty waiting room and I held my empty arms like I was holding him and I said a prayer: “God, this baby belongs to you. If you want me to raise him, help him survive this surgery and I will raise him to love you. But if you need to take him home, I understand.”

I had never uttered anything like that in my life. It gave me overwhelming peace and the strength to stay in a chair next to his crib for the three weeks after his surgery. I never put him down, trying to make up for the four days where nobody could hold him.

Caleb taught me he doesn’t only belong to me.

At six months of age, Caleb needed to be sedated for an MRI to check the healing of his heart. The cardiologist gave me the typewritten orders to give to the anesthesiologist. On the short walk between offices, I memorized the orders and before the meds were administered, I asked for confirmation of the meds and doses. “Are you a doctor?” asked the bemused anesthesiologist. “No,” I answered, “just looking out for my baby.”

Caleb taught me that his health depends on my being a Caleb Expert.

The first two years of his life, due to a missing thymus (1/3 of a healthy immune system, which is missing in many 22Q Deletion patients), Caleb was sick at least two weeks of every month. This was an extremely lonely time because we couldn’t be in public. But even when he had a 105 fever, Caleb smiled and tried so hard to interact with the rest of his family.

Caleb taught me about courage during adversity.

During this time, we had nine therapists in our home every week trying to get him caught up on missed developmental milestones. Some he made, some he never did, but through it all he tried so hard. In the back of my mind, I compared his development with my friends’ babies. This year, the kids his age are graduating high school. Caleb is in self-contained classes and will only receive a certificate of attendance when he finishes high school in three years.

Caleb taught me to let go of pride.

When Caleb was four years old, a doctor ran his first IQ test. Like many other parents of special needs children, I was still living in the bubble that my child would break the barriers. That morning, the doctor casually threw out what she thought I already knew: Caleb is mentally retarded. I honestly didn’t know and those words were a knife to my heart. I couldn’t let Caleb see my disappointment so we stopped for ice cream on the way home and I held my tears until he was sleeping soundly that night.

Caleb taught me that new diagnoses don’t change who he is and don’t alter his sweet soul.

To this day, whenever we are in public, people stare at Caleb. He is a handsome boy, six feet and an inch tall and he lives in custom-made Disney shirts. Caleb is a happy kid, which he exhibits in typical autism flapping or rocking behaviors. He has a high voice (due to 22Q) but the deepest laugh and the contrast causes many people to look. Some people look with kindness, some look with annoyance, but I have learned to avoid all looks (which isn’t good when we miss the sweet looks). Caleb picks up on my every emotion, so the more even I stay, the happier he is.

Caleb taught me that he is all that matters.

I am not a perfect mother. I get exhausted and depressed from the average of 60 doctor appointments we go to each year. I get frustrated when he and I can’t communicate, but I do my best to keep my tone even, my words kind and soft and my praise constant. I don’t cry when he pushes me away because my tears destroy him. This young man deals with more adversity in a minute than I do in an entire day and it is my honor and privilege to make his world comfortable and happy.

Caleb taught me that it is not about me. Being his mother means meeting his needs, not my own.