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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“What?” he asked.

“Can I come in, sweetie?”

“No.”

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

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

And there is nothing anyone can do to fix it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

helping hands

Overcoming the Crush of Paperwork When Your Kid has Special Needs

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

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

So why did it knock me out?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5:03 AM Caleb: “No snow today.”

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

6:47 AM Caleb: “No snow today.”

Me: “Yes, Caleb, go back to bed.”

7:43 AM  Caleb: “No snow today.”

Me: “Go back to bed.”

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

Caleb: “No breakfast. No snow today.”

Me: “How about waffles?”

Caleb: “No snow today.  School tomorrow.”

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

get.”

Caleb: “I don’t like snow.”

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

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

It didn’t matter.

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

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

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

Caleb: “I hate snow.”

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

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

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

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

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

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

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

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

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

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

I will do the same thing tomorrow.

Ugh. Psych Evals.

First, let me say that we live in a wonderful country with so many resources for anyone with disabilities.  It’s prudent that the agencies which govern those resources make you jump through a few hoops, to weed out the advantageous or greedy.  I get it.  But when there shouldn’t be a doubt that your kid is disabled, it is painful to wade through the paperwork and required tests necessary to secure the resources.

Today was a required psychological evaluation for Caleb.  I fought the agency, begging them to understand how horrible this process is for him.  He knows he should know the answer, but he can’t come up with it.  A geneticist once told me when autopsies have been performed on kids with Caleb’s syndrome, they found cul-de-sacs where healthy brains would have freeways.  There are some neural connections that will never form.  I asked a representative of the agency, “If I gave you an IQ test in Mandarin right now, how would you do?” and was met with uncomfortable silence, then, “I’m sorry, but if you don’t do the test now, it will be required within six years anyway.”  Best to get it over with.

Caleb’s last exam was about five years ago.  His IQ was in the low 40s.  As far as I understand, that is a pretty static number.  There haven’t been any miraculous mental growth spurts or any indication that his score has changed.  But government is government, and I get it.  I just don’t like it, for his sake.

We met with a very kind psychologist who either wasn’t familiar with kids like Caleb or had only been on the job for a few days.  He kept asking questions about sequencing, or asking Caleb to repeat words in a particular pattern.  Caleb kept looking to me, pleading with his eyes for me to translate, as I always do.  It wasn’t allowed, so all I could do was tell him he was doing a great job.

What the psychologist didn’t know was that Caleb’s day started at the dermatologist’s office, having three separate wounds cultured.  On two they used a needle.  On one a tiny knife.  Blood was pouring out of his skin, but Caleb just took it, asking me “All done now?”  He didn’t flinch or scream or anything he may have done 14 years ago.  And I found something profoundly sad in that.

After about 20 minutes, the psychologist said, “He obviously is completely dependent on you.”  In my head I repeated the Mandarin thing but in the office I just sat calmly and looked back at him.  Then he told me that I was distracting Caleb (which I definitely was) and asked me to sit behind him while they worked on a series of puzzle matching activities.  It is excruciating to watch any child shoot for the hoop and miss, so I sort of zoned out during this part.

I was watching doves on an adjacent building as they navigated the steep slope of the roof to get to the goodies in the gutter.  More doves from another building saw this and all flew over in a great flutter of wings and chirps.  Just as I was beginning to wonder, “If they have wings, why are they walking?  Why don’t they just fly down?” several of them took roller-coaster dives to get to the better bounty on the ground.  I was pondering whether they were scared while falling or if they knew their wings could save them, and then extrapolating how we humans might accomplish so much more if we lost our fear of falling when the psychologist told me we were done and we could leave.

“I have all I need,” he said, with a kind smile.

We had been there for 45 minutes of a two-hour appointment.  As we walked out, I put my arm around Caleb, praising him and telling him how proud I was of how hard he worked.  From the corner of my eye, I saw the psychologist watching us.  I don’t know what he thought, of course, but I hoped that perhaps the next time he meets a young man who so quickly can’t meet the demands of a test, he will let him go sooner.  It makes me weep that this world lacks the tools required to mine the vast intelligence that resides beneath the still pond of Caleb’s mind.  I railed against the injustice of forcing him to conform to our world, our rules, our standards.

I don’t think any one of us could ever live and thrive in his world the way he has in ours.

The Thing I Forgot About New Year’s Eve

Ah, New Year’s Eve.  Parties.  Confetti.  Reflection.  Hope.

And fireworks.  So many fireworks.

I don’t have anyone I can trust to babysit Caleb, so for many years, New Year’s Eve has been about board games and watching the ball drop on the TV.   It is what it is.

2014 was not a great year in our home, but I don’t want to bore you with all of that.  Let’s just say that last night I was filled with hope for the new year, that perhaps 2015 can be a herald of new beginnings.  A dear friend told me to pray for peace, and that is what I will be doing.

Caleb goes to sleep early so my motley crew and I were well ensconced in a card game around 9:00 last night when the first fireworks went off.  All of us held our breath, knowing the sound, the vibrations and the light would wake him up, and make him angry and fearful.  There is nothing I can say or do to calm him in these situations and it breaks my heart into a trillion little sharp pieces to see him upset, knowing I can’t help him.

Caleb has Hyperacusis, which means his hearing is too acute.  Sounds hurt him.  Add to that sensory integration disorder, and the poor kid rightfully becomes agitated very easily.  I attributed his fear of fireworks to these issues, but I didn’t know until yesterday that the fear goes deeper, rooted in his brain like the tendrils of a tenacious weed.

Yesterday morning, we saw Caleb’s therapist.  This man has helped unlock so much of what Caleb needs to say but is unable to—he’s changed our lives.  Along with fireworks, Caleb has an intense fear of fire trucks and ambulances and his therapist is helping us find a way to cope.  Caleb has unfortunately been in several ambulances and has had the first responders, the fire fighters, visit him too many times.

His therapist told me yesterday that even infants store sensory memory in their amygdala, the part of the brain responsible for memory.  He told me there is a theory that in people with autism, the amygdala is larger and therefore their flight or fight response is exaggerated.  So my poor son has locked deep in his brain the memory of his first ambulance ride, when he was about 12 hours old.  It was an almost two-hour ride.

Now that I picture that sweet baby, who was taken from me so surgeons could repair his heart, I can’t imagine how he must have felt.  I can’t imagine how it was to be born, held and loved for a few hours, then placed in a hospital crib under bright lights and have lines and needles stuck in all sorts of places.  Then his ribs were cracked open and I can’t let myself imagine that pain.  What a horrible way to enter the world.

Caleb’s therapist has told me many times that the opposite of fear is safety.  So every time we pass a fire truck even if it’s just moseying down the freeway, Caleb becomes upset.  A parked fire truck is even worse.  Ambulances racing past us create intense anxiety.  I am connecting the boom of fireworks to these other loud sounds, even if he doesn’t see the connection.  But his reaction is the same, and sometimes worse.  I tell him repeatedly that he is safe, that I am here and I will protect him but it seems that his sensory memory completely overwhelms him, and the words I toss out disintegrate like snowballs.

As we predicted last night, the fireworks roused Caleb from a deep sleep.  He came to me with bloodshot eyes, his cheek lined from where it lay on the pillow.  “Fireworks go home!” he pleaded.  “Show me clock when fireworks go home!”  My only answer, which turned out to be patently false, was, “They will soon, buddy.”  I tucked him back into bed again, hoping the noise would stop.

I know Caleb has to adjust to our world.  I know the people sending off the fireworks didn’t mean to cause chaos in our home.  I read with sadness my friends’ posts on Facebook about how their dogs were trembling from all the fireworks.  I didn’t want to compare Caleb’s reactions to a dog’s because it didn’t seem like an equal comparison.  But I still wanted to find a way to make my home soundproof and vibration-proof and light-proof.

The ball dropped and everyone retired to bed.  An hour later, I was reading and about to fall asleep when Caleb came in, his face creased with immutable fear.  He stood at my doorway, pleading, “Fireworks go home!”

I said, as calmly as I could, “They will soon, honey.”

“What time fireworks go home?” he asked, his voice going up in pitch.

“Soon, I hope, but I am here for you.  I will protect you.  Why don’t you sit in my bed until they stop?”

My words were cut off by Caleb hitting himself in the face with both hands so hard it would be considered assault if another person did that to him.

Fighting back tears, I asked him to come sit by me.  He made it to the foot of my bed and asked again, “Fireworks go home?”

I tried the deep breathing exercise his therapist had recommended.  Caleb got three breaths in before he folded in half, leaning forward and expelling a guttural scream with the velocity of vomit.

Swallowing tears that would only escalate the situation, I told him again that I was here, that I would protect him.  He ran from the room, but I stayed awake, on alert for his next visit.

I suggested his weighted blanket, but he was past the point where that would help.  He was past it when the first firework went off.

By now it was 1:00 AM and I thought the people setting off the fireworks might stop.  But the rumbles and booms continued and Caleb was soon back in my room.  This time he did consent to get under the covers and let me talk with him.  He did listen when I told him I would keep him safe.  He kept asking me to set a timer to let him know when the fireworks would stop which works in many other applications, but without knowing an end time it did no good.  Around 1:15 AM we heard the last boom.  He asked me if it was over and I said, again, “I hope so.”

I’ve said before, Caleb is still making progress.  A few years ago, this cycle would have continued unabated for hours.  It took about four hours this time, but that’s down from five last year.  I just wish there was more I could do.  I thought of going to a hotel somewhere but then laughed at myself, for New Year’s is a global thing.  Maybe the moon?  My friends and I have talked for years about buying an island where only people with special needs could live.  But for now we live with the rest of the world.

If it were sounds alone, perhaps he could handle it.  But he feels the boom.  He sees the light because even though he has room-darkening curtains, he pulls them back and then the lights scare him.  He feels the vibration on his floor.  There is no escape for him.  What torture he must endure.

Today we are reading his favorite books, maybe watching a movie.  Today is all about Caleb and helping him heal from the ordeal of last night.  And I am praying that everyone used all their fireworks last night.

Anything But Toy Story 3

So it’s Christmas time and we have our tree up and lit and it looks gorgeous.  Caleb really could not care less about it—he really wants the presents that are under the tree, but until then it’s just furniture to him.  I used to try to get him to help decorate, and even bought him a new ornament each year to try to encourage his participation, but a few years ago I figured, “Hey, it’s not his thing.”  I don’t think most teenage boys are chomping at the bit to decorate their trees, and I owe him the courtesy I would show any of them who declined.

Today I was dusting nearby the tree.  It is next to a window with wooden blinds.  Somehow, while I was dusting, Caleb’s Mr. Potato Head ornament became entangled with the string controls for the blinds.  I was laughing (by myself) pretty hard so I posted the picture on Facebook with the following caption: “Woody.  Buzz.  On.  My.  Go.”

I was still chuckling after I finished the rest of the cleaning so after I showered Caleb and got him into some fresh pajamas, I suggested we watch a Toy Story movie.  Any Toy Story movie.  I told Caleb to choose while I was showering.

He picked Toy Story 3.

In addition to the wonderful bright star that is Caleb, I also have a beautiful, wonderful, brilliant daughter named “Sophie” who is away at college in another state.  It thrills me to the depths of my soul that she is able to have this opportunity.  It thrills me that she has managed to escape from the rather difficult world that Caleb and I inhabit.  As much as I stand behind her, encouraging her and helping propel her along, I miss her.  With every breath.  She knows not to let me watch Toy Story 3.  But she wasn’t here to stop the carnage today.

I made Caleb his favorite soft pretzel and he and I got under our favorite big blanket and hit “play” on the movie.  I was doing okay.  I was thinking I could make it through this time.  My eyes filled up when all the toys realize they are drifting down toward the junk yard fire.  Caleb, who senses every hair on my head, instinctively looked at me during that shot.  I proudly smiled at him and said, “It’s okay.”

Allow me to back up for a second.  When I say Caleb senses every hair on my head, I am not exaggerating.  I’ve been told Caleb has face blindness and that he feels others’ emotions too deeply.  They hurt him.  Caleb can read my emotional temperature with head-aching accuracy.  I spend the hour before he arrives home from school picking off the emotional cobwebs of the day and putting myself into a happy place.  This was the suggestion of several therapists—if Caleb’s afternoon is easier, so is everyone’s.  Often, I fall apart after I’ve read him his bed time story and tucked him in.  But for the three hours he is here after school, it’s all happy times.  With all that he struggles with, it is one of the most important ways I take care of him.

So… back to the movie.  Right about when the toys were washing themselves off with the garden hose, I felt it.  Tears pricked at my eyes, and I felt the heartache of Andy (and Sophie) leaving for college, like it was the first time I saw the movie (during which my 10th grade Sophie incredulously whispered “Mom, you HAVE to stop doing that!).  Maybe I’m still working through Sophie being gone.

Now having had a few hours to digest the episode, I think I was definitely mourning Sophie being gone, but I’m also mourning that Caleb, who should be graduating this year, will never go to college.  All the kids who were babies when he was are moving on to other things—not all are going to college, but they are all graduating high school.  If Caleb ever lives on his own, it will be in a group home, something he has told me with ferocity he is nowhere near wanting to do.  All the dreams I had when I was pregnant with him (you know, Heisman trophy winner, debate team captain, valedictorian and salutatorian since he was so gifted) are settled around my feet like wilted confetti.  I’m learning to step over it, but it is hard.

Until this: I was thinking back to when Toy Story 3 came out in the theaters.  Yes, Sophie was annoyed, but Caleb kept leaning forward in his seat at every emotional moment.  When he saw my tears, he hit himself in the head a few times.  This was an improvement over the decade leading up to that moment, when my tears automatically caused his tears.  He would run screaming from the room, until I mostly learned to swallow tears.  But that’s not healthy so I started to let myself cry around him, telling him I’m okay, and it’s okay for people to cry.  And this afternoon, for the first time, he was accepting of that.  Caleb wasn’t happy I was crying (we did have to call his sister on the phone—she told him it was okay, too) but he didn’t scream.  He didn’t hit himself.  He cycled through his usual panic modes—asking for no bedtime story (a self-imposed punishment or communication that he just can’t handle me at that moment) but then he came back to center.

This is huge progress and it almost happened without my acknowledgment.

While I won’t be watching Brian’s Song or Heaven Can Wait (that one slays me every time) I am sitting here so proud of Caleb.  And it’s vindicating too—I was told years ago that he would stop learning, stop maturing, but he just made this huge milestone at 18!  As I have done Caleb’s whole life, I listen to the experts and take their words with all respect, but I also know this young man better than any of them.  And I know he’s not finished yet.