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.

It’s Called Handicapped For a Reason

Seriously, Modern Family?

Your show has given me great empathy for gay couples who want to marry. You have given me compassion towards families who are blessed by an interracial adoption. Your show makes me laugh and cry with its painfully accurate, often hilarious takes on what a family looks like in 2015.

Yours is the only show that my disabled 19 year-old son and I can watch together and both laugh. It is one of very few things we enjoy together. We both understand the humor, the characters and the Emmy-winning writing. Your comedy is so well-written that it is universal.

Will you try to imagine my outrage at September 30th’s episode? Luke is wearing fake glasses as part of the uniform he and his teenaged friends have chosen.

Alex says, “As an actual glasses wearer, this is offensive. It’s like non-disabled people who park in handicapped spots.”

Claire responds, indignantly, “I was in and out in three minutes, young lady. And it was your stye medication I was picking up.”

News flash, Modern Family writers: three minutes is too long. Why is it that you have opened the hearts and minds of millions to so many social situations yet you are trashing one of the few rights that belong to the disabled?

I’ve written before about how my family has been accosted for using our perfectly legal handicapped permit. A man went after my 19 year-old daughter who had taken her brother to the grocery store and parked in a handicapped spot. He followed her through the parking lot and ended up banging on her windshield demanding to know what the handicap was.

When my family and I exited a restaurant in Brandon, Florida, someone had taken the time to go into the restaurant, request a cocktail napkin and write a note to me, the driver, which essentially said that my only disability appeared to be mental retardation.

No one ever thinks a handicapped placard is for a kid. Maybe it’s too painful. Maybe it’s easier to think that someone is abusing the right to park in a handicapped space. Trust me, it is not, in any way, a privilege. In order to receive a legal placard, you need a doctor’s signature on a state-issued form, and you need to take that form to the DMV, and wait in whatever long-line hell is before you. There’s no special line for the handicapped.

My friends and I have been in countless situations where someone thinks it’s okay “just this once” to park in these spaces. No one who does this ever stops to think that maybe they took the last space. Maybe they took the space from the mom who has had to drag her disabled sick kid out to get acetaminophen. Maybe they took the space from the elderly man whose pain is so great that he risks the nerve-assaulting steps into the pharmacy just so he can get medicine to help with the pain.

It doesn’t matter. If you don’t have a permit and the handicapped person isn’t with you, it is illegal for you to park in that space. There’s no “it’s okay because it’s only three minutes” space. There’s no time it’s ever okay.

Here’s the raw, uncomfortable truth: handicapped spaces should be the least of our concerns. Our kids have pain and challenges that most of the population can’t begin to even want to understand.  When I requested Caleb’s doctor to sign for the form, he qualified in so many areas that she didn’t know which to fill out.

“Take your pick,” I said, trying to keep my chin up so I wouldn’t cry.

Here’s the bottom line: let’s all stop acting like it’s okay to ever, ever take up a handicapped spot if we don’t have the placard and the handicapped person in the car with us.

Trust me. You most likely would not want to trade even three minutes of our lives for three minutes of the blessedly uncomplicated lives that you live.

Self-Care For the Special Needs Mom

A wonderful woman named Sandra Woods Peoples recently created a Facebook group called 31 Days of Self Care for the Special-Needs Mom. It will begin in October and since my invitation, the group has swelled to 233 members. There is clearly a need for this type of refreshment for special needs moms, as well as for those moms who don’t have special needs kids. Moms in general are just exhausted, so here are a few seriously simple things we can do to care for ourselves.

Whenever Caleb is not with me, I am worrying about him every second. I try not to. I really try to release it, but it’s always in the back of my head that I could be called to get him at school because that has happened so often in his school career that I can’t get past it. When he gets home from school, he needs a lot of attention, which I am happy to give him, but it does take a lot out of me.

I am confined in my home every night when Caleb goes to bed. Because he can never be left alone, I can’t run out for an ice cream cone. If I forgot coffee cream for the morning, oh well. I always take advantage of BOGO items at the grocery store and try to keep the house stocked in case of illness/weather/migraines for me. I find a peace when I don’t fear running out of something important, like coffee.

I also need lots of things to help me decompress from the day. I am very fortunate that I have this little stockpile around me; here are some of my ideas for taking care of yourself.

The first thing I do after Caleb has gone to bed is light a candle. Some are scented, some are battery operated, some are simple white unscented. The dancing light just makes me happy.

I love magazines and I’ve read that if you are going to buy two issues in any given year, it might make more sense budget-wise to get a year’s subscription. Magazines are wonderful because we can almost always find time to read one story. I am a complete Reader’s Digest junkie—I rush through each edition, finding all of the joke sections, including the little surprises at the end of some stories, then I go back and read all the more substantial articles in one sitting. It’s a like a workout—I’m happy and a little exhausted at the end.

Netflix. Just Netflix.

Well, a little more on Netflix. I have movies that make me laugh and movies that make me cry. There are times that we need both of those things. I honestly believe that sometimes a good belly laugh is as therapeutic as crying. Some of the thrillers keep me so entranced that I get to escape for a little bit into someone else’s problems that are wonderfully solved by the end. They give me hope.

The last time I cried about Caleb was when he broke his femur and went through a very long, very painful recovery. The only other time before that when I cried about Caleb was when I learned he needed a second heart surgery when he was four months old.

The rest of the time, I need to be strong for him. He needs me to be strong for him. Partially due to his autism, and partially due to him being a very empathetic kid (I know those two don’t often go together but they do in his case), Caleb can’t handle when I cry. It upsets him on a visceral level, so I often plan to cry later, but we all know how successful that tactic can be. Therefore, cue the movies. I get the cry out when he is happily sleeping.

Baths. I don’t get there as often as I should, but when I take one, it’s with two cups of Epsom salts and a few drops of essential oils—lavender, eucalyptus and rosemary are my favorites. Not together or they smell gross. Trust me.

One of my very favorite friends who is also a special-needs mom introduced me to a great idea: girl’s night at my house. I gather a group of friends and invite them over, telling everyone to bring whatever they’d like to drink and an appetizer to share. It doesn’t cost me any more than what my regular at-home dinner would cost and we all have a wonderful time. Friendship and laughter are amazingly good for the soul.

Here is my last tip, but I think it’s the most important: be kind to Future Me. I didn’t originate this thought but it first came to me when I was staying with my mom and did a few little things so she wouldn’t have to. I love her so much that I wanted to make her day easier. Then I thought, I need to love myself so much that I want to make my day easier, too.

Being kind to the Future Me means doing the dishes right after dinner so I don’t wake up the next morning to a smelly mess which sets the day off on completely the wrong tone. It’s a pain to dishes whenever we do them, so why not just get them done and put away quickly?

Being kind to the Future Me means keeping up on my laundry, folding it right out of the dryer and putting it away as soon as it’s all done. Fortunately, Caleb absolutely loves putting his laundry away. He even grabs the basket before I’m done sometimes because he can’t wait. He is an awesome kid. For those of you whose kids have OCD, like Caleb, this is a great way to channel that impulse into something productive.

Being kind to the Future Me also means making my bed every morning. It means keeping my house as tidy as I can. I sort my mail over the recycle bin, or otherwise I will end up with piles all over the kitchen, often hiding important mail, which creates a different kind of stress when I find it a month later.

I never know what the day might bring, so if I start off on with a clean house, it means that whenever I walk through the door later, with whatever chaos has rained down on us that day, the house is a calm and happy place. I take a relaxing breath the moment I enter and it helps me to deal with only the new issue at hand. When I haven’t done this, and I walk into a messy house, it raises my stress level to where it’s almost beeping as loud as an alarm in my head, which helps absolutely no one.

Another thing I have recently started is making coffee the night before so all I have to do is push a button on my way to wake Caleb up. I also set out all the items he will need in the morning, minus the medicine (he’s never taken it on his own, but it’s not worth the risk). Because he can’t swallow pills, Caleb requires all meds to be crushed and dropped on top of a shot glass filled with chocolate milk–a bigger glass leads to the meds clumping and sticking to the sides and never getting into his mouth.

Caleb’s propensity to fatally overheat requires a regular glass of low-fat chocolate milk, one of orange juice and one of water before he leaves the house to have breakfast at school. So now I set out three empty glasses, plus the shot glass, plus the spoons to crush the meds. After I have showered him, helped him dress and he is ready for the day, he watches his favorite cartoon while I fill the glasses, crush the meds and give them to him while I’m assembling snack for the day, which is laid out as well, except for the juice box, which I hope stays cool enough to last until snack time.

Being a mom is stressful. Being a special-needs mom is a different kind of stressful. If we take the time to care for ourselves it can only make us healthier moms, which in turn creates healthier kids. I know it sounds like just one more thing to do, but try picking just one idea. See if that lightens your stress load. See if it makes you happier in your own skin and if that makes any or all of your kids a little calmer or happier or whatever it is that defines your wish list for them.

You can follow Sandra Wood Peoples at: http://www.sandrapeoples.com/self-care-for-the-special-needs-mom/

With Gratitude to Rosemary Kennedy From The Mom of a Child With Special Needs

This week’s People magazine featured Rosemary Kennedy on the cover as well as a detailed story of her life. The article was based on the books Rosemary: The Hidden Kennedy Daughter by Kate Clifford Larson and The Missing Kennedy by Elizabeth Koehler-Pentacoff. One huge revelation regarded her 1918 birth, stating that the delivery nurse, trying to stall delivery, held Rosemary’s head and forced it back into her mother’s birth canal. For two hours. The article makes reference to Rosemary’s later intellectual disabilities and her family’s embarrassment at the time, ultimately leading to a fully disabling lobotomy. I don’t judge or blame the Kennedys—judgement is a cruel trick used to manipulate the past.

The article reminded me of one of my favorite books, Kim Edwards’ The Memory Keeper’s Daughter. It takes place in 1964. The mother’s husband and his nurse assist during a home birth to twins. The first child is a healthy boy; the second is a baby girl with Down Syndrome. The father’s sister died at age 12 after a life in an institution, so to spare his wife, he asks the nurse to put the baby girl in an institution and to tell his wife that the other baby died. The nurse was smitten by the precious baby girl and instead moved away and secretly raised her.

After I finished reading the Rosemary Kennedy article, I said a prayer of gratitude. Life with a disabled child is measurably more difficult, but as I’ve said before, if Caleb had to be born with so many challenges, I’m delighted that I’m his mama. I’m so grateful that today we aren’t pressured to put our children in an institution, as this used to be the heavy-handed instruction posed as a question to parents in hospitals.

What speared my heart about Rosemary Kennedy was reading about her intellectual disability. She was slower than her siblings and her IQ was below what is considered to be normal intelligence, but, for a time, she tried to keep up with them. She was able to do math problems, write and keep a diary. In 1941 at age 23, a lobotomy was performed when Rosemary displayed aggression and mood swings. It left her mentally and physically incapacitated. She became a prisoner in her own body and mind. Today, with proper treatment, medication and therapies, Rosemary may have been able to lead a full, independent life.

I write often of the pain, isolation and stress of raising a child with significant special needs. I will never sugarcoat it or succumb to the often-misquoted platitude of “God never gives you more than you can handle.” God has given me inordinate strength so many times in Caleb’s life and without it I don’t know how I could walk this walk. I am profoundly grateful that even though Caleb is often stared at in public, we don’t also have to suffer the societal taboo and shame that the Kennedy family and others like them faced.

At the same time, so much of this life, and my friend’s lives, are more than we can handle. I understand why Rosemary was institutionalized. I understand how her parents made that decision. I am gratefully awed that by the time Caleb was born in 1996 I was able to take him home with me with no questions asked or even insinuated.

From the time he was a toddler, Caleb has received specialized therapies that have brought him to his highest functioning level, which is still below that of Rosemary Kennedy’s. It’s almost as if entire professions have popped up since babies with special needs have been sent to live at home. By extension, there are so many learning centers and accommodations for children with learning disabilities who can function in typical education classes. So many affected people have gone on to live much fuller lives.

Even with all of these supports, there are still children who are sent to live in group homes at a very young age. I recently came in contact with a woman who was working at a special needs camp. In her group was a 19 year-old man with 22Q Deletion Syndrome, just like Caleb. His family was no longer able to care for him so he was living in a group home. I know this happens. I know there are good places. I know there are viable reasons why families can no longer care for their children. My heart aches for all of them.

For now, and for as long as I am able, I am profoundly grateful that Caleb lives with me and attends a self-contained special education class with wonderful teachers at a great public high school. He loves going to school. He loves riding the bus. His room is decorated with classic car signs, Disney posters and awesome bed linens with trains on them. He loves the freedom and serenity that comes from having his own special place. He is truly the happiest person I know.

For decades, the media has focused on the Kennedy family’s shame about Rosemary. It was alluded to in the article and in so many articles and television shows about her life. I would like to help refocus Rosemary’s story into an impactful one that helped so many future babies, children and adults. I believe her story created great empathy and caused so many people to reflect on and question how the disabled are treated. She certainly inspired her sister Eunice, who wrote an article about her for The Saturday Evening Post. Eunice welcomed Rosemary to her home for visits. She went on to found the Special Olympics, which has brought incalculable joy to millions, both athletes and the families and friends who cheer for them.

I wish Rosemary could be here to see all the good that came from the tragic horror of her life. I like to think that she can.

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

The Unmitigated Glory of a Reprieve When Your Kid has Special Needs

This morning, when I stepped outside to water the flowers, I noticed a magnificent breeze that reminds the California girl in me of the Santa Ana winds. We reside nowhere near California and where we live, temperatures have been consistently over 95 degrees for most of the summer. The air is so humid it almost feels you are drinking water if you take a deep breath. Because Caleb can actually die if he becomes too hot, the oppressive heat has kept us inside for over six weeks.

The breeze this morning invigorated me. I felt like Sandra Bullock in Practical Magic, when Nicole Kidman wakes her in the middle of the night to tell her that their aunts are making margaritas. The sisters kick their feet, giggle, and scream happy squeals as they totter down the staircase to find their already-tipsy aunts happily handing off two fresh margaritas.

There were no margaritas for me this morning, but as soon as I felt the wonderful outside air, I kicked my feet, giggled and yelled up to Caleb, “Hey! Do you want to go to the swings?”

Caleb answered more quickly than usual with a resounding “yes” so I got him dressed, gave him a water bottle for the three-minute walk and out we went. Today there is lots of cloud cover, which provided a shelter from the sun. That marvelous breeze was still swirling around. I met an awesome new neighbor and Caleb was able to enthusiastically swing for almost five minutes before his hands turned red. We had to immediately get into the car so I could blast maximum air conditioning on him to get his hands to return to their normal color.

This ten-minute reprieve was a delightful gift. It filled Caleb and me with such joy that it will likely carry us through the rest of the day. Reprieves are like precious gems that we are given to hold onto for only a moment, for they will soon turn to dust and life will go back to whatever it was before.

That’s the thing about reprieves: you never know when they are coming. You also never know when they will end with their crisp finality. Reprieves are an excellent reminder that we need to live in the moment, not worrying about the future or regretting the past. While in a reprieve, we need to soak up the solace, joy and giddy invigoration.

Among my friends who have kids with special needs, one of our biggest pet peeves is when people say, “God never gives you more than you can handle” or “God only gave you this child because you’re such a great person.” When people say this it feels like a platitude, like, “I’m so glad God doesn’t think that I could handle your life, because it looks like it sucks” or “Good thing I’m not a good person, because, wow, how can you live like this?”

This exact saying is nowhere in the Bible.  I have searched and searched for it. God says he will equip us for the battle and that he won’t tempt us beyond what we can bear. He promises we will never be alone.

I believe that reprieves, though they occur rarely, are one of God’s many gifts to us. They are equipment for battle and a calm in the storm of our daily lives. They are a reminder of how much he loves us and an acknowledgement that he fully understands how physically, spiritually and emotionally draining our lives are. Reprieves allow us to catch our breath, straighten our shoulders and move on with a smile to the next challenge, because there will always, always be one.

I was enjoying a reprieve on the morning of August 4, 2006, the second day of Caleb’s fifth grade year. I was waiting in my hairdresser’s chair for my first haircut since April. I was just beginning to unkink from the long summer and really looking forward to having my hair cut. My stylist was late that day. Five minutes after I had been relaxing in the salon chair, my cell rang loudly, with the screen announcing it was Caleb’s school. All they would say was that he had hurt his leg and I needed to come immediately.

When I arrived, there were two fire trucks and three ambulances lined up at the front office. Caleb had broken his leg and it would be almost six months before he could go back to school.

A few years later, Caleb was at a summer camp that we just loved. Sophie and I took the opportunity to see The Amazing Spider Man. We made it almost halfway through the movie. We loved it and were so grateful for the time that we could just be just a normal mother and daughter. We didn’t have to do the million things we have to do everywhere we go to keep Caleb safe and calm and shielded from people who often stare too long and whisper too loudly.

My phone lit up so I stepped outside to answer it. A well-meaning young woman at the camp felt bad that Caleb was inside so she took him outside to be with the other campers. He immediately overheated, zoomed past the initial warning sign of red hands, and they panicked. They stayed outside and tried to force water down his throat, which caused him to have a seizure. I told Sophie we had to leave, and, ever the best big sister, she said, “Let’s go.”

Reprieves can take many forms and they can be one minute long or sometimes last a week. Any break from doctor visits, surgeries, endless therapies and even uncooperative weather can calm our souls and allow us to regain our strength. A reprieve can be a kind smile from a stranger at the grocery store or a waitress who patiently and sweetly answers Caleb’s questions about her car and her birthday.

If no reprieves show up when we need them, sometimes we can create our own. Excellent books make for wonderful escapes. Kristin Hannah’s The Nightingale had me believing I was living in World War II in France for an educational and hopeful week this spring.

The ability to record, pause and stream TV is my favorite invention ever. When you are homebound most of the time, Netflix and a DVR can be your best friends.

My daughter and I are binge-watching Parks and Rec. If you know the show, read this next sentence as Rob Lowe: “There is literally nothing in Parks and Rec that could frighten or confuse Caleb if he entered the room when someone is watching it.” Along with anything on HGTV, these are really the only two things we can watch during the day, unless you count all the Disney movies that we have seen over 800 times each.

I’m trying to envision what a reprieve could look like if it were visible. A film of one would show a wilted flower, turning brown at the edges and bending toward the earth. The first few drops of rain wake the flower and within minutes, it is standing tall and proudly blooming again.

Because none of us know what the next minute might bring, and dwelling on mistakes from the past only drags you back there, try to breathe in the beauty of whatever reprieve presents itself to you. It’s not a coincidence, it’s a gift from God who knows exactly what you need.

Summertime Sadness

Today I just need to rant. But first, many thanks to the ethereal Lana Del Ray for giving me today’s title.

I’ve written before about the cumulative effects of taking care of a person with special needs. If we count in the time I cared for Sophie as a baby, I have been wiping bottoms, brushing teeth and reading bed time stories for 20 years.  I’m tired.

Summer is absolutely awful for us. Aside from the lack of school structure, Caleb will die if he overheats. Because he can’t regulate his body temperature properly, his body goes into overdrive when it’s hot out and this process exhausts him. This summer has been hotter than normal and it means we are stuck inside. Errands like grocery shopping  or even a haircut wipe Caleb out.

With the extreme heat, we need to keep our house at 67 degrees (I can’t even begin to think about this month’s electric bill—I see lots of Kraft mac and cheese in our future). I arrived at this number after a few weeks of experimenting with other temperatures. Anything higher makes the indoor temperature too warm for Caleb. This number can only hold if every blind and curtain is drawn. It’s so dark and dreary it feels like we are living in the Addams Family’s house.

In Philippians 4:11, the Apostle Paul wrote about learning to be content in all situations.  He wrote this as an innocent man in prison, so I’m thinking if he can do that, so can I. I am making a conscious effort to be content, but it is really, really hard. This morning, as I was driving Caleb to the pool, I was actively thanking God for all of the blessings in my life. The fog of summertime sadness (AKA seasonal affective disorder, just not the usual kind) was just beginning to lift.

Let me back up a second here. Crowds in a pool are generally not good for Caleb and me. When he was young, a child who just didn’t know any better asked Caleb if he was Frankenstein because of his large open-heart surgery scar.  One time, teenage boys starting throwing a ball at Caleb’s head. Caleb’s unusually high voice and autism mannerisms like hand flapping cause many curious glances.

I’ve heard people who think I can’t hear them asking what is wrong with him. All of these situations are painful so we go to the community pool at 8:30 AM before it officially opens at 10:00 so we can have it to ourselves (don’t worry, Caleb swims well, he’s taller than the deepest part of the pool, there are two phones at the pool,  and I was a lifeguard in my younger years).

Okay, so we get to the pool today. I was getting in some exercise and Caleb was happily floating in the shady part of the deep end. He instinctively knows the sun hurts him so he always seeks out shade.  We have been staying for about an hour each trip and Caleb leaves the pool so happy that it carries him through the rest of the day.

Then it happened. A woman showed up with four young girls (I’m guessing they were around age 8). They looked our way, which was fine. Except Caleb yelled out in his distinctive voice, “Hi!” Caleb is the most social person I’ve ever met on the autism spectrum. I gave a small wave. But not one of these five people said hi or waved back. I’m probably reading too much into it, but 18 years of experience makes me think that they heard his odd voice, knew he was different and, like so many people, act like Caleb’s challenges are contagious so they avoid him completely.

I don’t know what made me think this, but I somehow knew that the woman was going to use the exercise room that is adjacent to the pool. It’s behind glass walls. And I knew she was going to let those girls swim while she was so far away. I both envy and resent people who let their kids swim unattended or climb rock walls or play on playgrounds. None of those are options for us because Caleb needs constant, unwavering watching. The few times I have ever taken my eyes off of Caleb for one literal minute, he has broken his wrist, fallen and broken the braces off of his teeth or fallen on concrete and landed on his forehead. However, as a former lifeguard, I can’t turn off my instinct to watch everyone in a pool.

The woman said to the group of young girls, “You stay in the shallow end so I can see you.” I’m fairly certain she wasn’t implying that I should watch them, but it did seem irresponsible to me that she would leave them basically unattended in a pool. It’s happened before, at therapy sessions or other pool times where people just assume any other adult will keep an eye on their kid. I can’t take my eyes off Caleb so this wasn’t going to happen. Further, without an adult monitoring the kids, the kids were more likely to say something to Caleb or start laughing and pointing.

So we left.

Life at home is very difficult in the summer. I was on the phone with one of my best friends yesterday and Caleb came down four times asking if he could have the car brochure that he was holding for his birthday. This happens an average of about 123 times a day. It’s maddening, but I need to say, in my calmest voice, that he already owns the thing he is holding in his hand.

Another question he asks multiple times during the day is if his regular rubber ducks would be sad if he got a new rubber duck. I have to tell him, repeatedly, that yes, they would be upset. If I absentmindedly say we can get a new one, he lets me know this was the wrong answer and the whole process starts over. Failure to give the correct answer spikes the poor kid’s anxiety so the questions are quadrupled.

I adore my son. I’ve always said that if he had to be born with so many challenges that I am beyond grateful that I get to be his mom. I do my best to keep his life happy and calm and as predictable as possible because that lessens the anxiety that rules his world.

I was really trying to be content today. The one positive thing we had going for us today was that time in the pool, and it was cut in half. Now we’re back in our oddly dark home and I’m on deck for endless questioning.

So here’s my question for everyone reading this: what do you do to find contentment when it’s as difficult as trying to finish a dream that you woke up in the middle of?

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.

Sully, Captain Jack and the Baked Potato: An Insider’s Guide To Caleb’s Sense of Humor

A friend told me the other day that she likes my blog but it’s so sad she can’t always read through. This took me back a bit, because while Caleb’s is a sad situation, he is one of the funniest people I know. His therapist tells me humor is a sign of deep intelligence, and that Caleb couldn’t be so funny if there wasn’t a lot going on in his head. Let me share a few of my favorite Caleb stories.

When Caleb was five years old, he was in a self-contained class with only three other boys. One of them, Emmanuel, was constantly testing limits and being sent to time-out. Caleb has a heart that hurts when his friends hurt—he was upset for his friend being in time-out and for his teacher being upset because he adored her. So on a December Sunday, when our pastor flung out her arms and proclaimed, “Rejoice! Emmanuel is coming!” Caleb grabbed the arm of my shirt, his face went almost white and he said in a normal voice, not a quiet church voice, “No Emmanuel coming! No!” Caleb was well-loved in that church, so chuckles abounded.

That spring, we were taking a walk in our suburban subdivision, along a path we often walked. There were no farms anywhere near us. Out of one of the bushes popped a rooster. Sophie screamed, I jumped back and Caleb calmly said, “Oh, hi chicken.”

Around this time, we introduced Caleb to miniature golf. Sophie went, I went, then I stood behind Caleb to teach him how to hold his club. He looked at me, looked at the hole, picked up his ball, walked over and dropped it right in. He looked back at me again, like “Why do you make things so hard?”

Caleb loves movies, television shows and music. He memorizes lines and even though it may seem to be above his functioning level, he knows exactly when to use each phrase. When he was in sixth grade, we had friends over for pizza one night. One of them chose a particularly large slice and said, “That’s so big!” Caleb smiled from across the table and said, clear as day, “That’s what she said.” Everyone laughed so hard that he put this phrase into regular rotation. He also picked up “Oh, you gotta be kidding me” from somewhere and that one pops up pretty often too.

We had a pool in the backyard of that house. One day, Caleb was floating around when he noticed the brown house next door was being painted green. His eyes lit up and he said, “Mom, make it red!” pointing to our house. It reminded me of the scene in Sleeping Beauty where the fairies are fighting over a pink or blue dress for Aurora. I would have loved to wave a wand for him and make the whole house red.

Around this time, Caleb broke his femur. He was in a series of body casts for three months and was taking pain medication for a while. Pain meds are notorious for constipation issues, so when his stomach was so swollen it was pushing against the cast, I had to give him an enema. I explained what I was doing, but can anyone really be prepared for those things? As soon as I finished, he looked up at me and said, with perfect diction: “What is wrong with you?” A few minutes passed, the enema did its job and Caleb looked at me and said. “Oh. All better. Thank you.”

Caleb was blessed by a Make-A-Wish trip last year and he chose his favorite place, Disney World. We were walking through Frontierland when Peter Pan came skipping by. Caleb thinks of Peter Pan as a dear friend so when he passed, Caleb just yelled out, “Hey, Peter Pan!” The young man portraying him that day saw the Make a Wish badge in a flash of a second. He stopped hopping and told Caleb where to go wait and he would come see him in a few minutes. Caleb was like, “Yeah, you will. We’re buds.”

My aunt convinced Caleb that he would like the ride Star Tours, which we had never ridden. She said that since all boys like Star Wars, Caleb would love this virtual reality ride. We sat down, buckled ourselves in and in the first millisecond of movement and sound I knew we had made a terrible mistake. Caleb looked at me, eyes afire and clapped his hands in front of my face. I kept telling him I was sorry and that if he closed his eyes it wouldn’t be so bad, but he kept clapping away. I knew he wasn’t in danger of any steep drops and that once the ride was over, he would be fine. His anger was actually a good sign—he focused so much on that that it took his attention off of his fear. As a special needs parent my choice is often either to cry or laugh my ass off and I chose laughter that day. He was totally fine when we got off the ride and to this day, when I mess up or burn his toast or whatever, he says, “Just like Star Tours!” He hasn’t let my aunt live it down either.

Sophie has been dating her boyfriend Al for almost four years. We all adore him. The first time he came to the house to meet Caleb, Sophie primed him with all she could to prepare him for anything Caleb might say or do.  Sophie and Al sat in the family room and called for Caleb to come say hi. He did, wearing only a t-shirt. At 14 years old. To this day, Sophie and Al call Caleb Winnie the Pooh, due to the similarity in their wardrobe.

One of Caleb’s favorite movies is Monsters University. Since Caleb is a giant himself, he identifies with Sully. There’s a scene where all the monsters are at a fraternity party, with loud music, strobe lights and lots of dancing. Sully is standing off to the side when Squishy throws an imaginary rope to get Sully to dance. Sully laughs it off, then sort of side-shuffle-dances his way into the crowd. Caleb does the best imitation of this you could imagine. He also does a mean Captain Jack Sparrow.

The incident that led me to write this blog happened just the other night. I had made chicken and baked potatoes for dinner. I haven’t baked potatoes in a long time, so I dressed Caleb’s with sour cream and cheddar cheese, set it before him and then went to get my plate. By the time I sat down, Caleb had picked up his potato, folded it closed and was eating it like a sandwich, skin and all. I started to giggle and said, “Here, honey, eat it like this,” modeling the use of a fork. Caleb shook his head, said, “No. Like this,” and kept chomping away.

I always say that Caleb has had to conform in so many ways to live in our world. I think conforming some of my ways to his is a better idea, because his world is a much more fun place to be.

Sick Daze

Caleb got very sick this weekend and quickly reminded me of two things: 1) the only time he will cuddle with me is when he’s sick and 2) the minute he’s sick I scramble all of my medical knowledge and treatments with the dizzying speed of the Avengers assembling.

I’ve written before that for the first two years of his life, Caleb was sick for at least two weeks of every month. I mean 105-degree-fevers-that-sapped-all-of-his-energy sicknesses. The hallmark of 22Q Deletion Syndrome is a missing thymus, which is 1/3 of a healthy immune system.

Without the thymus, Caleb is extremely vulnerable to viruses, but any illness can typically attach and hang on for much longer than it would in a healthy person. Because he can’t communicate well, I have to pay close attention to whatever symptoms are obvious and try to treat them.

Every illness takes me back to those two years and I find myself bracing for the worst news. I never want Caleb to feel anything but protected and safe, while I crumble inside fearing what is next.

Caleb’s language is extremely delayed and disordered—most people can understand a word or two that he says, but he also speaks like someone who is native in another language. He leaves out articles, only knows male pronouns, and usually only knows one tense of a verb.  With me, because we are together all the time, I can understand almost everything he says.

It sucks when any kid is sick. Every parent feels that helplessness and that unfulfilled wish to take their kid’s place when they are in pain. But with Caleb, each illness could potentially put him in the hospital. Each illness stirs up fear and dread, and I know from its onset that I won’t sleep until he’s better.

This language barrier makes it extraordinarily difficult to treat Caleb when he is sick. Even though he is 6’2” a doctor has to treat him like he is a toddler, who can’t say exactly where they hurt or what is wrong. Caleb is the antithesis of Dr. Theodore Woodward’s precept of:  “When you hear hoofbeats, think of horses not zebras.” Dr. Woodward wanted to teach his medical interns that a simple diagnosis is more likely than a rare one. This is not the case with my sweet Caleb. He is always, always a zebra. What may present as an ear infection in a neurotypical kid will likely be a urinary tract infection in Caleb.

The way Caleb’s medical history has worked out is that he gets a pediatrician, it takes them a year or two to understand the zebra approach, and then, for various reasons, we have moved. He has seen his current pediatrician, whom we both adore, for almost two years now, but she informed me on a recent visit that he will age out of her practice next month. I understand—there are one day-old babies, toddlers and elementary school kids, and then my gentle giant and I walk in. I’m hoping to get one more visit with her tomorrow because she totally and completely understands how to approach any illness with which Caleb presents.

Last night, Caleb developed a cough in the late afternoon and asked to go to bed a half hour early. This morning, he woke after sleeping 15 hours with glazed eyes and a voice which my daughter lovingly likened to the late Joan Rivers. At that point, his fever was 98.9 (his normal is 97.5), so I gave him breakfast, lots of water and tucked him back into bed. He slept a few more hours then came down to eat lunch and have more fluids pushed at him. A little while later, on my millionth hand-on-the-forehead of the day, he was burning up with a temperature of 101.6.

Because he can’t regulate his body temperature on a good day, this climbing fever is bad news. I am fully anticipating a 2:00 AM wakeup call where his fever is over 103. The immune system shuts down a bit during the night and this scenario is all but guaranteed.

My arsenal of treatments for Caleb is extensive. Whenever he enters our home from anywhere, he washes his hands. I sterilize door handles, faucet handles, remotes and light switches once a week. I have backups to already-full containers of acetaminophen, ibuprofen and Benadryl. I have unopened containers of cough medicine. There have been times where I couldn’t get him to a doctor or urgent care office, so I have to be prepared to nurse him through a day or two without formal treatment.

Today I had an epiphany that makes me want to slap my forehead like those poor people in the V8 commercials. Caleb can’t swallow medications so for 8 years I have run to the computer for every fever, trying to calculate the correct dosage by weight of children’s liquid pain relievers. These are gloppy, heavy liquids and sometimes Caleb would need 6 teaspoons or more of one, then 6 or more of another (ibuprofen and acetaminophen don’t work on their own against Caleb’s inability to regulate his body temperature, so I have to alternate doses every two hours).

Today, voila, I finally figured out I could crush the adult pills, like I do with his other meds, and put them in a shot glass of chocolate milk. He was incredibly relieved to take meds this way and I sat there scratching my head and wondering what took me so long to come up with this one.

About 98% of the time, when we do go to the doctor, Caleb has a viral infection. He receives regular flu and pneumococcal vaccines, and he received one for meningitis. Without these vaccines, Caleb’s weak immune system would be far too vulnerable. With them, he still gets sick, but it seems to be a less life-threatening illness for him. I expect when we see the doctor tomorrow she will tell me it’s viral, but on the microscopic chance that it’s bacterial, we have to act early and get ahead of it so that it doesn’t become too strong for Caleb to fight. A few years ago, Caleb contracted a virus that lasted 21 days. I never want for him to have to go through something like that again.

Caleb’s been sleeping beside me as I write this and I marvel at how well he listens to his own body. How many of us, when we’re sick, tough it out or act like we are so strong we don’t need to rest? He is so much wiser than me and I’m sure if I had posed the problem of liquid medication dosages to him, he would have figured it out 8 years ago.

For now, I am praying that all he is doing to take care of himself works and that he is back to his happy, joking self very soon. The house feels way too quiet without his laughter.