autism – Neverland Without a GPS

Gems in the Desert

April 5, 2022April 5, 2022Kate Welch2 Comments

Recently, I spent the day with my darling Caleb and after I returned him to his group home, I realized how exceedingly long it has been since I’ve posted. Please forgive me, dear reader, and let me catch you up.

For anyone debating group home placement, allow me to share the wonderful aspect of such a move. Not all placements are good, just as all relationships or jobs or other situations are not good. There is still much effort and constant attention and communication. Oh, but it’s so worth it, mostly for the special needs adult.

In two and a half years, Caleb has gained independence, as any 25-year-old should. He can advocate for himself, communicating his needs and wants. Without me to type words into his tablet, he has learned to read so he can go to YouTube and play his favorite music, movies and TV shows.

Along with necessary structure, Caleb has three roommates with whom he eats meals, goes on outings, watches movies and sports. The staff are particularly kind and involved and he knows their schedules. He attends a day program and has developed close relationships with several other attendees. It’s a marvel to me, as I always dreaded, in the dark, hidden corner of my mind that he would live his life deprived of such wonders.

A few weeks ago, someone suggested that Caleb be evaluated at a tutoring center. One of their treatments involves playing classical music to help align his brain, citing a recent student who went on to thrive in math and was promoted to goalie on his soccer team. Despite not knowing Caleb, they were urging me to pursue this evaluation.

I took a breath, learning as I have over two decades, to remember that this suggestion was likely coming from a place of concern and hope. I told them that Caleb and I have put in thousands of hours of speech, occupational, physical, and equine therapies. In concert with the world’s best teachers and tweaked programs, Caleb has ascended to his highest functional level, and he continues to learn.

While informing this individual that this soccer goalie and my Caleb didn’t exist in the same realm, I allowed myself to reflect on how delightfully the world has evolved since Caleb’s birth.

Twenty-five years ago, autism was a scary, whispered word. It’s still not likely a diagnosis that anyone would dream about for their child, but the diagnosis is burgeoning into something more recognized and accepted.

At breakfast that day, without any prompting, the lovely server asked me if the plastic glass was okay for him, or if he would prefer a to-go cup. Her warm smile and kind glance was and would have been precious water to me in the very scary desert of Caleb’s diagnosis when he was two years old.

We all know this acceptance is not global. Caleb, my daughter and son-in-law, my husband and I have endured too many instances of ignorance, cruelty, and debased rudeness. Those instances don’t deserve any mention here. They haven’t earned a place in any of our memories so I’m leaving them in the trash bin in my mind, rather than bringing them out for recycling now. There is nothing redeeming in reliving such pain.

Back to the sparkling bubbles of acceptance, our day involved a routine doctor visit. We have had wonderful doctors, but now there is an inherent, complete recognition of Caleb and his personality. Isn’t that what all of us Neverland parents crave? Don’t we want the world to see our marvelous children for who they are?

Even if you are not here yet, or you are weary from assaults from the unkind, know that there is the possibility of finding this gem glittering in what can feel like a barren desert.

Afterwards, in the car, Caleb picked up my phone as always, because he chooses all the music. He immediately began playing The Moldau written by Czech composer Smetana in 1874. This song tells instrumentally of the Moldau River as it journeys from inception in Bohemia, as two streams powerfully connect, merging with other bodies of water until it lands in Prague.

The Moldeau has played in our home for decades. Caleb is also partial to Vivaldi and the various works of Yo-Yo Ma. Sophie has deciphered that he particularly enjoys music in the key of G.

So, when this well-meaning person posited that Caleb should attend a center to listen to classical music, I smiled and thanked them for the suggestion.

But here is the tiny nugget that would have been missed if I were not sitting next to Caleb. As the car filled with music, he pinched the bridge of his nose, his effort to hold back tears, and whispered my dear father’s name. We lost this inimitable man two years ago and are still in the throes of grief. This great, good man is the reason we know this particular song. He played this and many other classical collections as I grew up and then he and I did the same for both Caleb and Sophie.

As always with Caleb, it was a quiet moment. He communicated all he needed to with one word and one gesture. I looked at him and said, “Honey, I miss him too.” He nodded, looked out the window and relaxed into the song. We both smiled, remembering my father as he mock-conducted the stereo in the family room, calling attention to each note, telling us where the stream picked up other waters, wearing a beatific smile of prodigious content. What joy to remember such a happy time instead of only mourning his loss.

You don’t need to force classical music or any other trope on any child. Just like with the soccer goalie, this worked for us but may not be for everyone. Look for the connections. Look for children who associate colors with emotions, or whom you find stimming in certain situations and try to see the cause. You may need to part the forest a bit to find your particular tree, but it’s there.

Your tiny stream will find its own path and journey to its own place in this very large world.

Our kids have extraordinary intelligence that presents in its own way, but I promise you it is there and you will find it.

Be well, dear reader, until next time.

The Body Remembers

October 19, 2020October 20, 2020Kate Welch2 Comments

Happy 24^th birthday to my darling Caleb. I’m not with you this morning, just as I wasn’t on that cold, rainy day in Princeton, New Jersey in 1996. You had been born just after midnight and the staff kept you from me all night because they knew something was not quite right.

I understand now. I empathize with the nurses who kept begging me to get some sleep. They knew the next part of our journey, of which I was naively unaware.

I am someone who wants to know everything, read everything, and learn the language of doctors so I can converse with them, but this naivete served me very well for the next six weeks. If I had known what was coming, I may have just collapsed.

“Please,” the one who had scrubbed into my unplanned c-section begged, around 4 AM, “Please try to get some sleep.”

“It’s been four hours. I just want to hold him. I want to tell him his name. Then I will sleep, I promise.”

I will never forget the soft touch of her hand as she brushed my hair from my face.

“They just need to watch him a little more and then I promise we will bring him to you.”

“What are they watching him for? I just had my daughter 17 months ago and she was with me within an hour. I had a c-section then too, but I was able to let her sleep on my chest. Please, I just need to meet him.”

“I know,” she said, and I know now that when she looked out the window across the room, that she was holding back tears. She was just being the messenger, but it was hurting her too.

Oh, my sweet boy, what were you thinking all those hours when you were alone under bright lights being poked and prodded?

Our labor was violent because my blood type doesn’t agree with yours. I felt my own life slipping away in the blood that was falling from the bed to splash on the floor, in the vomit that was spewing from my mouth, landing everywhere in that room. I fought so hard to hang onto that lifeforce. I couldn’t leave you and your sister Sophie.

After several hours, as you were fighting me, all 9.6 pounds of you, my life’s spirit began to wane. In that time, I felt an immediate kinship and sorrow for all the moms before me who had died in childbirth. I knew that they, too, had fought as hard as they could, and I knew their heartache in the marrow of my bones.

You, my hero boy, kept fighting. You knew it was your time to get out and you did everything right. My body just stayed locked, betraying me in the one act for which I had waited a lifetime.

I don’t know how long after, but soon I was being wheeled down the hallway on a bed with one wheel that would not keep spinning, like a grocery cart that keeps bumping you into the shelves. Panicked voices swirled all around me. The lights above me flickered as I passed out.

“Stay with us, Kate, we’re almost there.”

I was asleep before the sedation even hit. Even then I was dying. You knew this and you kept kicking and fighting for your own life, as you should have.

I woke to the oddest sensation of scissors cutting through my last c-section scar and pushed the button for more morphine, then slid back into oblivion.

A short while later, I awoke because the air in the room stilled.

I realized that something was dreadfully wrong.

You didn’t cry. The doctor kept gently rubbing your chest and saying, “Stay with us.”

I heard the whisper of “failed APGAR” and as they opened the door to wheel you to the nursery, one of the nurses turned back to me and said, “It’s a boy, Kate, we’re just taking him down the hall and you can see him soon.”

Terrified and conscious, I felt each stitch in my abdomen. It was just a tugging of skin and the anesthesia kept the pain away, but my 27-year-old self-lay there in foggy confusion, waiting for them to be done so I could see you.

The Medical Center at Princeton wouldn’t open a fully operational Neonatal Intensive Care Unit (NICU) until 2019. In 1996, they did all they could for you. You were what they called then a “blue baby,” and our wonderful pediatrician was doing his best with an adult ultrasound, trying to ascertain a diagnosis. He was restricted by lack of equipment that was available in so many other hospitals at the time.

During those hours that you were kept from me, that dedicated physician was making calls all around the tri-state area. He surely had noticed the markers that screamed a genetic syndrome. He was fighting to help you survive.

By 6 AM I was still wide awake. My heart was starting to hurt for want of having you in my arms. The nurses continued to be so kind, to beg me to get some rest, but sleep was in another realm of the galaxy until I could see you.

Finally, as family came to congratulate us around 11:00 AM, they were asked to leave so the doctor could deliver his news. He had been Sophie’s pediatrician and he was rather brash with his words, but he was always right, and he always did exactly what she needed.

His usually neat ponytail was unruly, lines creased his forehead, and his eyes were red from enduring every second of this with me, though I didn’t know that. He asked everyone but your father and me to leave, then he sat gently on the edge of my bed.

“I know you’ve been waiting to see your son, but there is something wrong with his heart.”

I sat up too quickly, tearing a few of my new stitches. I had never even thought that a baby could have a heart problem. With mercy that I hope he received back a thousand times, he didn’t tell me any of the other things that he surely expected we faced.

“How do you know something is wrong? And how do you not know what it is?”

“Our equipment here is only for adults, so he needs to go to a children’s hospital where they can fully evaluate him.”

I asked him which one he would send his baby to. Without taking a breath he said, “Children’s Hospital of Philadelphia.”

I would later find that he had done his residency there and was incredibly well-respected by everyone we would meet. That rough outer shell was protecting a heart that loved his patients more than their parents would ever know.

“I need to see him” I whimpered through tears that would not stop for four days, until I could be with you.

“I know,” he said, as the EMTs made their arrival a few minutes too soon. “Give her a minute with him, please,” he said, just as that sweet nurse brought you in, bundled tightly in that white and aqua and orange blanket so reminiscent of 1996.

“Hi there,” I said as I reached for you. You were almost 10 pounds and so long. You reached your hand out to hold mine and I started to cry harder. “Your name is Caleb. Do you like that name?”

My sweet boy, you didn’t coo or cry or even look around much. But you felt so right in my arms. You already lived in my heart and I couldn’t bear to let you go. But if I didn’t, they couldn’t have made an aortic arch for you, or sewn the hole between your pumping ventricles. If I didn’t, you wouldn’t be here and that was not even a consideration.

Precious Caleb, you have been pure joy in my life. You have led me down roads I would have gladly hurried by, but I’m grateful for each one because I got to keep you and help you grow as you bravely traversed each one. You have suffered so much pain, so many surgeries and accidents and illnesses, but you are the happiest and strongest person I know.

This morning, as I have for the past 23 years, I have woken from a nightmare. Thankfully, I don’t remember them. I think my body remembers the physical and psychological pain of your birth and my brain sends a nightmare, so I don’t forget.

I don’t forget how very lucky I am to have been able to bring you home. I don’t forget that you are still with me, still laughing that belly laugh and still smiling through those beautiful blue eyes. I don’t forget the hours and hours of all kinds of therapies and incredible therapists and teachers and doctors who have brought you to where you are now: a semi-independent young man who is truly living his best life.

My beautiful boy, may this birthday and every one to follow always be days of laughter and love. May you always know how treasured you are. May you feel in that wonderful, corrected heart the love that you bring out in others. May you always know that you are exactly where and who you are supposed to be.

With all my love,

Mom

22Q, Quarantine and COVID-19

March 24, 2020March 24, 2020Kate Welch2 Comments

First, let me begin this blog with the most wonderful news. Caleb has settled into his new home like he’s lived there forever. He has three male roommates his age who adore him. They watch movies, play basketball in the front yard and share meals. The staff of this home is loving, protective, knowledgeable and they treat all of the residents like family. This is why I’ve been so quiet. Every time I see him or talk to him on the phone he is happy and excited. Any writer will tell you those stories are very boring to read.

Then COVID-19 hit and though the first week of quarantine has definitely been challenging, it hasn’t hit me like it has others. I’ve devoted a lot of thought to this and realized that it’s because this is not the first time I personally have lived through various types of quarantines, which so many 22Q parents will recognize, to the point where they may feel they are looking in a mirror.

I will share some helpful tips in a minute, but the most important thing I will share is that you will get through this. I’ve been here, in this pit of despair and because I’ve climbed out of it for now, I can extend a hand and help you.

This quarantine will be difficult and some days will drain every single ounce of your patience, energy and humor. Some days will be so dark, but always remember, no matter how dark it is, the sun is up there, beaming behind clouds, ready and waiting to light your life right back up.

In 1995 when I was four months’ pregnant with my daughter Sophie, I began having contractions. Terrified, my mom immediately took me to my doctor, who measured the contractions and put me on complete bed rest. For five months. I was allowed one shower a day and to make my lunch and a simple dinner and that was it. Leaving home was out of the question.

My mother, who drops everything when her kids need her, began driving an hour and a half once a week to bring me lunch and to clean my two-bedroom apartment. She told me she knew this was so hard, but that every day I should make my bed, shower, put on makeup, fix my hair and put on one of my super cute maternity outfits, then go to the couch. This was some of the best advice I have ever received. It kept me from falling into depression.

Sophie made it to her due date, as did her brother Caleb 17 months later. As you know, Caleb was not healthy. After his open-heart surgery at four days old, I stayed in a green plastic wanna-be recliner for three weeks, holding him the entire time. My heart broke for this sweet baby whose entrance into the world was met with unfathomable pain. During that time, I showered twice a week and ate one meal a day, dashing to McDonald’s for a Big Mac Meal at lunch when he was napping. I have no idea how my body made the milk to feed him, but it did.

When I could finally bring Caleb home, the difference in me after those births was shocking. After Sophie, my hair was shiny and long, I had curvy baby weight that I cared nothing about and my skin shone with health. After Caleb, I was so thin that my hip bones stuck out. I had lost all muscle tone and looked like someone with a major illness. My hair was thin and lackluster and my skin dull from not having been washed properly in a long time. I was 27 but looked so old and frail.

If I thought my days of quarantine were over, reality was waiting at home to smack me in the face. Not 24 hours after we got home, Caleb contracted a 105 degree fever. I called the hospital where we had been, and they said not to let anyone in the house. They reminded me that Caleb is missing his thymus, one third of a healthy immune system, and that he would be most vulnerable to viruses–which we are all now learning are notoriously difficult to treat. They told me to watch him closely and to treat the fever, which I did.

Then came the hard part. Sweet neighbors and friends kept stopping by to bring gifts. I had to talk to them through the door, telling them thank you but can you please leave the gift outside? Family wanted to visit but I had to tell them no. I eventually put newspaper over the sidelights by the front door, a sort of warning to not come close.

I treated our home the way many places are being treated right now. I used Clorox wipes to clean every doorknob, cabinet, toilet and faucet handle several times a day. I washed my hands, Sophie’s hands and Caleb’s hands multiple times a day. Pacifiers were sterilized daily. I was still nursing Caleb so thank God I didn’t have to sterilize bottles. We stayed at home, always. I went to the grocery store at night when my ex-husband was home, so Caleb wouldn’t be exposed to germs there.

Even with all of those precautions, Caleb was seriously ill, with a 105 degree fever for two weeks of every month. For two years. Not only were we isolated from society and not allowed to leave the house, there was the constant undertow of worry that Caleb could die. Sophie couldn’t have friends over or go to their homes. We briefly joined a playgroup but there were two moms who brought sick babies because “I just had to get out of the house.” That led to a full month of fevers for Caleb.

After that two-year quarantine, Caleb entered a preschool for kids with developmental delays like him. He loved it, but people often sent their sick children, so he missed at least a week of school every month. This went on until he was in high school.

When Caleb was 10 years old, he broke his femur at recess, trying to be Buzz Lightyear. I wasn’t there, but I am haunted by the image of this cheerful little boy yelling, “To infinity and beyond,” jumping, and landing with a horrible snap. This break required two surgeries and six months of home recovery. At first he was in so much pain he didn’t mind being home, then around month four he started becoming frustrated and angry. I was right there with him. The cast and then the various braces made it incredibly difficult for me to take him anywhere by myself, so, again, we stayed home.

Caleb can’t regulate his body temperature and a neurologist told me that if he overheats he could die. So 23 summers we spent inside, unless we could be in a pool. Add in the various hurricanes, snow storms and random school cancellations (we have moved a lot) and I almost think Caleb and I spent half of the 23 years he lived with me at home. These were incredibly taxing times and my heart actually hurts thinking of all the children stuck at home right now, typical or not. Caleb’s autism would kick into high gear and he would scream, tell me he hated snow or weather or whatever kept him from his friends. It was exhausting and stressful to the point that at 50 years old, I have 18 significant health conditions. I’m just worn down.

Parenting is certainly not for the weak. Being a parent in this crisis with no known end date is almost intolerable.

For us, this quarantine is different. Caleb is happy. Like I mentioned above, he is with friends and rotating staff. He has everything he could possibly ever want in his new room. I know some of this is maturity but the resounding truth is that he is exactly where he needs to be, and I’m right where I need to be, always ready to go get him if he needs extra care or contracts this virus.

So, the reason I shared all of this is to help some of you navigate this confusing, frightening world. There is so much out of our control, we need to find things that we can control, to give ourselves much-needed mental strength. The stronger we are, the more peaceful we are, the better the chance that our children will feed off of that energy, rather than fear.

I have dealt with depression several times in my life. Depression can be contagious, affecting those in your home even if you think it doesn’t. It can make a stressful situation so much worse. If you need medication or treatment of any kind, please seek it out. If, like my case, it’s a life situation, not a chemical imbalance, try some of these suggestions.

Always make your bed when you wake up in the morning. It starts your day off right and every time you see it, you will see an accomplishment. Shower daily, or as often as you normally do. On dreary days, like this one I’m in, turn on lights. Light candles. String Christmas lights. Bringing light to darkness is always a path to joy.

This one sounds challenging, but it’s a game changer. Keep the house clean. Keep up on the laundry. Do the dishes right after each meal and empty the dishwasher as soon as it’s ready. I can hear the groans, but chaos begets chaos and the goal here is peace.

Exercise if you can—those endorphins will frame your days. If you can’t, play with your kids. The Floor is Lava is always a hit. So is making a fort in the dining room. Have a picnic wherever you can. Bake a birthday cake, even if no one’s birthday is anywhere near. A doctor told me that card games or any games where pieces are exchanged is not a good idea because it would be literally passing germs, but Pictionary or charades allow for social distancing.

If all else fails, take three deep breaths. Take a Mom or Dad time-out. Step outside your front door and breathe the fresh air for just a minute. Try to find just three things to be grateful for and write them down, then look them over later.

The picture for this post is my favorite little lamp. I never used to light it because I didn’t want it to burn out. It’s on every day now. In the words of the immortal Erma Bombeck, “use the good China.”

And always, always, always look for the light.

Everything You’ve Ever Wanted is on the Other Side of Fear

October 31, 2019November 1, 2019Kate WelchLeave a comment

Right off the bat, let’s quickly attribute that quote to George Addair. I’ve found plenty of proof that he said that, but I can’t find anything else about the man. His quote, however, changed my life.

Fifty-two days ago, I placed my sweet, vulnerable, darling Caleb into a residential home. Fear of that act has siphoned my life force for the past decade. But more on that later.

Fear has been a constant companion in my life. As a little girl, I feared the dark and Hamburgler-like robbers who might sneak in during the night.

We would go on to have our apartment broken into and the one car in our family stolen, so those fears grew long, invasive roots like a willow tree. Many storms would come and invade otherwise normal days, sending those roots further into the soil of my psyche.

As an adult, my fears became more esoteric. Fear of failing, fear of success, fear of saying or doing the wrong thing, fear of reacting too strongly. Feminism was rampant by 1985, but it had not yet perched in my soul.

Mostly I feared confrontation. I would simply stop talking to a friend rather than have a conversation. If I received a bad grade for a project, I would write a letter to the teacher. During one history presentation, I videotaped it rather than perform my speech in front of the class—I was afraid of that teacher, who, two years later, would go to prison for attacking a student.

Confrontation, in my mind had two speeds: 1 or 100 MPH. One MPH was complete avoidance, which leads to self-hatred and an awful pit in my stomach. 100 MPH is screaming at the subject, like that out-of-control father in Twisted Sister’s We’re Not Gonna Take It video.

My life would be a series of conflict-avoidance scenarios. I won’t list them here but the most egregious was that I was raped, after two sips of a drink at a fraternity party, in 1987, when I was 17 years old. I am deadly serious when I tell you I didn’t report him for fear of his reputation being sullied. I also knew viscerally that at that point in time, I would be blamed.

Another trespass on my soul was having my college honors thesis denied by a female professor because she claimed it was written with a traditional woman’s point of view. My interpretation of feminism means we support all women in their beliefs, but my university did not share this view and I was denied that honor at graduation.

Three years later, pregnant with my second child, I didn’t feel any fear, certainly nothing like I had felt when I had my daughter Sophie 17 months before. Throughout Caleb’s pregnancy I felt peace and content.

When he was born at midnight and taken by noon from Princeton, NJ to Philadelphia, PA, I still felt no fear. When a cardiologist called the hospital later that night and told me that Caleb seemed to have a condition called DiGeorge Syndrome (now called 22Q Deletion Syndrome), I felt no fear for me, only for that tiny baby who was now so far away from me, awaiting open-heart surgery. I was soaking in worry, but not fear.

Six weeks later, after a grueling recovery for both of us, my little family was transferred from New Jersey to Buffalo, New York. I received a bill from the Children’s Hospital of Philadelphia in the amount of $144,000 for Caleb’s surgery and hospital stay.

I knew I had to call immediately, but I couldn’t let my babies out of my sight for any length of time so I sat at the kitchen table, preparing my confrontation. Raising my voice would frighten Caleb and his 18 month-old sister so I took a few deep breaths. My hands shook a bit as I dialed the hospital.

The woman on the other line verified the bill.

“But we have insurance,” I said calmly.

“Yes,” she said disdainfully, “but you didn’t pre-register your son so it won’t go through insurance.”

“So after missing my baby for four days and leaving against medical advice, you’re telling me that before rushing to see my baby, I was supposed to stop by and register him?”

“That’s exactly what I’m telling you,” she huffed. “It’s procedure. Now, can you pay all at once or—“

“Is this the number you wanted?”

Silence.

“You see, ma’am, the first thing I did when I arrived at your hospital was pre-register my son. We’re done here, right?”

That bill ended up being paid in full. After I hung up, a peace settled about my chest. I had just had my first confrontation without yelling. I was a little drunk with power. If only I had known how many peace-stealing confrontations were headed my way.

Two months later, I called another hospital because I hadn’t received a confirmation call from the MRI department for the next day’s appointment.

“We have no Caleb on the schedule today or on any day. You must have done something wrong.”

My heart raced, my throat completely dried out and tears threatened to shoot straight out of my eyes.

“But… but, there is a hole in the crack of his bottom and they told me it could be a tethered spinal cord, which would need immediate medical attention. You have to see him.”

“I could try to schedule him now, but our next appointment is 8 months out.”

I went numb. I looked at that little boy who had already had open-heart surgery, four missed spinal taps and a balloon catheterization. Failure was out of the question.

I believe God spoke for me now, because there is no way, in that moment that I could have responded with: “Ma’am, I don’t know if you have children, but if you do, I pray they are healthy. If they have special needs like my son, I pray that people will be kinder to you than you are being to me right now.”

“I’m so sorry,” she said, and I believed her. “Let me see what I can do.”

For the test, she had to coordinate the test, anesthesiologists and a cardiologist, but she made it happen two days later. Caleb would eventually be diagnosed with midline failure to close, but his spine, for that time, was healthy.

Fear had made confrontation something ugly and angry in my mind. It had made confrontation something in which neither would be happy, with no growth or understanding. In learning to face fear, I was learning to change the face of confrontation and it would change my life and my children’s lives completely.

The rape and the damaged girl it left behind in tatters would lead to an abusive 19-year marriage, from which I eventually fled, calling upon all of my fear of confrontation. Sure, I was scarred and hobbling, but I had my teenage babies with me. I left like many abused wives, under the watch of a skilled therapist. We slipped out quietly while he was out of town, taking only our clothes and the computer which held all of my writing.

I conquered the fear of being a single mom—I learned that I had lived that role for almost two decades and that fear was baseless.

There would be other fear and fights along the way: fights for inclusion, therapies, proper class placement, medical tests and treatments. When Caleb turned 21, I had to fight to find doctors and dentists who were willing to take him on, since the pediatric world could no longer see him.

But there was this one fear. You know the kind. The kind, that, as a child, made a sweater in the corner of your room at night look like a monster. As an adult, it’s the kind that slips into a dream and rotates that dream into a nightmare that will wake you, dripping in sweat, afraid of the most gruesome corner of your mind.

This fear was “What will happen to my son, the light and love of my life, if I die? Who on earth could care for him?”

If I dig a little further, that fear descends to knowing that, with this child, I am not leaving him to live a better life than I had. We all want our children to know better than we did. Caleb will have a full life, but a much different one than I dreamed for him.

Caleb’s sister, Sophie, is knee-deep into a PhD program in genetics. She is learning computer coding. She knows more in the first second of her waking than I will know in a month. Sophie will live every parent’s dream—she will live a full, satisfying, rewarding life.

My fear of leaving Caleb exploded on October 2. A traumatic act did occur, but to me, thank the Lord, not Caleb. I went into that confrontation with the courage of an All Star sliding into home plate.

The new placement took a few conversations. I advocated for an immediate change of placement, which used that carefully honed skill of quiet confrontation.

I only realized after everything had happened that my entire life had prepared me for that one phone call.

Caleb, though his calm, sweet, strong disposition taught me to fight for him. He taught me to look fear in the face and walk toward it. Like Dory and Nemo sang, “You can’t go over it, you have to go through it.”

Through careful negotiation, I was able to help him secure housing in the Cadillac of homes in our area, with amazing staff, roommates his own age, and a private bed and bathroom. He still attends the day program he adores. Friends and I believe he is the happiest and most independent we’ve ever seen him.

Fear blocked me from ever seeing that Caleb’s life could be this wonderful. The wise Mr. Addair was right.

I know I have many more fears to confront, but I will use this experience as my exemplar.

So what’s on the other side of your fear?

Photo Credit: Dr. Joseph Ivan on Twitter

…And Caleb Has Left the Building

Image September 24, 2019September 25, 2019Kate WelchLeave a comment

Just over two weeks ago, my almost 23 year-old son Caleb went to live in a residential home about 40 minutes away. We are both still wandering in Neverland, a little dazed, still unsure of the landscape, still questioning what the future holds in her hidden hands.

I write this for anyone who has endured this or will endure this challenge, because it is unlike any other.

When I took Sophie to her college dorm in 2013, my mom, Sophie and I lugged all of her belongings up three flights of stairs in 95 degree heat. We had planned so well that the room was pretty much together in an hour. I then hugged Sophie, hard, told her how proud I was of her and how much I loved her and we left.

Sophie later told me that at the time she felt a bit taken aback, as she watched other parents stay all day, then take their kids out for dinner while she trekked to the cafeteria for her first meal, feeling a little shaky and alone.

I cried for about a month, missing the funny, sweet, helpful soul that Sophie is. The house felt empty, as though it too missed the breath of her. I now am enamored of the wife, PhD student and young woman she is. College shaped her and she blossomed through the experience.

Six years later, she now tells me that my leaving her was one of the greatest gifts I ever gave her because she realized right away that everything was on her. Overnight, she became one of the most self-reliant people I’ve ever known.

The day before we were to move Caleb to his new home, I Face Timed Sophie and her husband Al, whom Caleb adores. We told him that he was a big boy, and just like his sister and brother-in-law before him, he was now old enough to go to college. This was the best analogy we could conjure. His reaction was a gut-punch.

Caleb speaks in somewhat broken English. He communicates his wants and needs in as few words as possible. On this day, he said, word-for-word, while crying and lunging into my lap: “I don’t want to go to college. I love you, Mom. I want to take care of you.”

Stress has taken an awful toll on my body. My 18 health conditions are what secured Caleb’s placement. Maybe he knows of these. Maybe he thought he could care for me. But he doesn’t know that some of these conditions could be fatal and he needs to establish his own life in case I’m not here.

I maintain my relative sanity by not anticipating the future. I could never have envisioned this reaction and it left me crying and shaking, which I would do a lot in the next few weeks.

I use special needs picture-exchange software (Boardmaker) to explain changes or trips to Caleb. I made him one for this, showing that he would live in his new house, I would stay in mine, my boyfriend would stay in his, his dad and his wife would stay at theirs and that Sophie and Al would stay at theirs. I didn’t want him to feel he was being kicked out or replaced. This picture board calmed him a bit.

Over the next 45 minutes, Sophie and Al told Caleb how much fun he would have, that he would have new friends and that he could still go to the day program he adores. They told him he would have a new room and that we would all still see him.

Typical of Caleb’s incredibly strong and sweet soul, he finally said, “I like college. Sophie, Al, Mom come tomorrow?” We all said yes and he seemed happy.

We wanted his room to be fully finished the first time he saw it. My sweet father had already sent a painter to transform the room into a color called Blissful Blue, a favorite of Caleb’s. I had already mounted light and heat-blocking navy blue curtains with silver stars. I had a ceiling fan installed to keep the room cool. I had purchased all new Toy Story 4 bedding and made a super soft headboard for him to lean against.

After he left for his day program, I picked up the U-Haul and Sophie and Al drove three hours to come help me. Over the next four hours, ninja Sophie and Al packed up as much as they could of Caleb’s favorite things. I can’t remember what I did but these two worked with a synchronicity that astounded me. I am always awed by the strength of their marriage, in every situation.

They followed my U-Haul to Caleb’s new house but I had to leave immediately to go back and meet his bus. In the short time it took me to drive home and return Caleb to his new house, Sophie and Al had completely emptied the U-Haul and set up Caleb’s room. The book shelves were stacked, the tall DVD shelf was completely organized, and the TV and DVD hooked up and ready to go. When I arrived, we put up Toy Story 4 decals everywhere, including an incredibly large one that looks like a window with the characters coming through, a gift from sweet family members.

When Caleb saw the room for the first time, he said, “Wow!” He touched all of his familiar books, toys, the baby dolls he loves. He looked in the closet and saw his clothes hanging neatly. He touched the new bedding and marveled at the window decal above his bed.

As soon as it was all done, I reflected on how I had left Sophie at college. I remembered the slicing in my heart as I said goodbye to that child and I steeled myself for another slicing as I turned to Caleb. I knew this one would hurt even more.

I knew I had to leave. I knew dragging it out would only hurt us both. But as I looked at his still-baby hands and the chubby cheeks on his still-childlike face, our life together ran through my vision, pictures on old-fashioned film reels.

Caleb is the child for whom I almost died in childbirth. He was born at midnight and they wouldn’t bring him to me because he was blue, but they wouldn’t tell me that. I wouldn’t sleep until I had held him, nursed him. Our pediatrician came in, right after the nurse handed me my beautiful baby at 11 AM. He told me something was wrong with his heart, but they didn’t know what. Right behind him came EMTs, rolling a mobile crib to take him 2 ½ hours away.

That night came a call from a cardiologist at Children’s Hospital of Philadelphia, informing me that not only did Caleb have two heart defects that needed immediate surgery, but he believed, and was later proven right, that Caleb had DiGeorge Syndrome, now called 22Q Deletion Syndrome. I held the phone away from me, like this must be a sick joke, but he kept talking, telling me all the things that could go wrong for Caleb.

Caleb is the 4 day-old baby for whom I prayed through open-heart surgery. I stayed in a chair next to his crib for three weeks, doing immeasurable harm to myself and never healing properly from his C-section. I never regretted it.

Caleb is the child who would have 55 doctor visits a year, with specialists I didn’t even know existed. For the first two years of his life, he was really sick for two weeks of every month. He would get 105 degree fevers and then have seizures wherein he turned blue as his body tried to bring down the temperature. He needed another heart surgery at four months because he grew scar tissue from the open-heart.

Caleb, due to balance and coordination issues that would never fully develop, broke his wrist on one playground and his femur on another. When he falls, he doesn’t have the instinct to break a fall with his hands. He fell directly on his face several times, leaving angry red scratches from cement or mulch. He once fell on a wet floor at a restaurant, knocking the braces right off of his teeth.

He’s afraid of fireworks and dogs. He hates when the power goes out. He hates when anyone cries, I think because he recognizes pain and doesn’t want anyone to suffer. When he’s about to cry, he pinches the bridge of his nose, as if trying to stop it.

So saying goodbye to this child was infinitely more difficult than leaving Sophie at college, where she had a world of wonderful things to explore. Saying goodbye to Caleb meant leaving him in the care of strangers, in the company of three other male residents with special needs.

I kissed this giant boy and hugged him, getting to the U-Haul before he could see me cry. I tried not to picture him studying his room. I tried not to picture his confusion. I tried not to picture what he was thinking, because I never really know anyway.

A week after the move, I picked him up for some doctor appointments. He seemed happy, but he smelled different. His hair wasn’t combed the way I do. He had a mustache that I jokingly call half-way to Tom Selleck. Quick aside, I went right to Wal-Mart, bought an electric razor and shaved him in the parking lot. I’m so used to people staring at Caleb that this didn’t bother either of us one bit.

I posted a picture from that day on Facebook and a dear friend from high school messaged me with words from her own 80 year-old mother, who is taking care of her disabled son: “My mom said to remind you that no one will ever take care of Caleb as well as you do, but that doesn’t mean they aren’t taking care of him.”

I take enormous peace from this statement. But it’s still something I will have to work hard to accept.

Last night I met some friends at our favorite bar. I recently learned that I knew one of the darling bartenders as a child. Her brother was a good friend of Caleb’s in preschool. Though I see her frequently, I hadn’t seen him since about 2000. Last night, he came to visit his sister. He’s a grown man, with a beard and a backwards baseball hat, enjoying a drink at a bar. As soon as I recognized who he was, I had to leave.

Seeing that young man there reminded me of all that Caleb is not and never will be. Seeing him made me realize the chasm between him and Caleb, who as young boys weren’t all that different. Seeing him made my heart sink for the millionth time in Caleb’s life, a reminder that something went horribly wrong when I carried that sweet baby in my body. I had to leave because my poor friends have seen me cry way too many times in the past two weeks.

I went home to my empty house and didn’t feel home. I am now a mother with no children at home and I don’t quite know who that makes me.

Caleb goes up and down with his emotions—sometimes he wants to move back home in 2024 (the length of college, as my intelligent friends figured out) but he has now moved it up to 2020. Sometimes he likes it at his new home, sometimes he doesn’t, but he hasn’t said anything alarming. I’ve spoken with the staff about his hygiene. I will still keep taking him to doctor appointments and next month we will have a party for his birthday.

The most painful part is that Caleb and I are still in Neverland, just not together. I feel like he is on one side of the island and I’m on the other. Every instinct in me tells me to go to him, to bring him home and lavish him with the love and care I’ve always given him. But I feel a metaphorical hand on my chest telling me to wait, to give Caleb a chance to blossom like Sophie did.

I pray constantly that he may know I did this out of love, when I’m sure it doesn’t feel like that for him now.

So I sit on the shore, staring at the mountain range between us, listening for the slightest sound that he needs me. I hope my Peter Pan is finding his footing and learning to thrive and that he will only occasionally listen for me.

Then I will know it’s time for me to leave Neverland.

Photo credit: otherland-larp.fandom.com

Everyday Loss

Image August 18, 2019August 18, 2019Kate Welch1 Comment

In my little world, the last few months have brought an inordinate amount of death. A dear, dear friend named Jamie passed away after fighting cancer for nine long years and every time I think of her, I am haunted by her laugh and the smile that always lived in her sparkling, mischievous brown eyes. I think of her husband and two adult children who now have to carry on without the light that emanated from their wondrous wife and mom.

My friend Lisa, who lives with me in the trenches of special needs moms, lost her brother Dan after a long fight with cancer, even though he was in remission. Dan was so well-loved that at the celebration of his life after a private funeral, the venue was filled to capacity. The group chose to remember Dan by swapping funny stories and remembering the vibrant, kind and joyful man he was.

In our big world, you can’t turn on the news without hearing of innocents being slayed all around the world. It’s an angry time and an angry place with too much loss. I enjoy watching retrospective documentaries and I wonder what future documentarians will have to say about this volatile time.

At a birthday party the other night, I was talking with an acquaintance named Julia who quickly became a new friend. A few weeks ago, she had posted pictures on Facebook of a beautiful young woman, alongside some very sad words. So I asked Julia about her. She told me that that smiling girl was her darling daughter Amanda, who had been killed in a tragic car accident when she was 19 years old, on July 25, 1999. I’ve seen this woman socially several times and she always has a smile on her face that belies the horrific tragedy of what she went through 20 years ago. You would never know by looking of the weight of the burden she carries.

Before we spoke, I may have subconsciously set Julia into the nasty, embarrassing corner of my mind where I sweep people who look to me like they have lead perfect, happy lives with perpetually clean houses and new cars and no money worries and wonderful, fulfilling marriages and careers. That corner needs to be tented and fumigated as if it were housing the worst insects on the planet, because it is. There is no perfect anything. Everyone has a story and if we delude ourselves into thinking that they don’t, jealousy and anger will shrivel our hearts to raisins.

I’ve written before of the loss associated with raising a child with special needs. There is the loss of friendships you thought could withstand the new normal of medical visits, relentless hand sanitization and rules about who can touch what. There is the loss of family members you thought could withstand the rubber hammock of changing emotions and ABA- mandated lessons to follow. There is the loss of typical classrooms and sports or music or whatever hobby might have floated around the edges of your mind as part of the future for your child.

There is the loss of the feeling of pride of your newborn or toddler in public. The first time your child with autism completely loses it in a grocery store, or a football game, or anywhere where scrutiny hides like a demon in shadows. The love you feel for that young soul supersedes the stares, the whispers, the gossip. But it hurts. Oh, how it hurts. So you hold your head high, willing the tears to be quietly whisked away as if by windshield wipers. You hold the hand of that precious baby, sending all your love into the grip, while they twist and turn and contort to get away from you.

You can’t win. You won’t ever win. But that won’t stop you from trying.

You will try at school. You will try at your other children’s schools. You will try at block parties. And the mall. And the gas station. You will try at the community pool.

And you will always fail. Because it’s not about you.

It took years, eons to finally accept that Caleb was not meant for my world, nor me for his. That’s the cruelest reality about having a child with special needs. Neither of you fits. You love them fiercely, with a love that transcends time and space and the rude, glaring, invasive, probing stares of those who do not understand. But, alas, you two will never inhabit the same universe.

Perhaps the most painful is when that child, teenager and then adult, is in pain, and you try to offer comfort.

“Leave me alone,” or “I’m busy” is the refrain you will hear most often. Sometimes it will be a scream. Sometimes that scream will be accompanied by a flat hand to his own face.

So you step back, your weary heart wounded yet again. You try to will the tears to be sucked back into well-worn ducts, but somehow that doesn’t happen.

After these exchanges, I often find myself in the fetal position on my couch, wrapped in the denim blanket that once graced Caleb’s first big-boy bed. It has faded to the softest blue and it has several holes in it from so much use. It is my greatest comfort in the world.

Incomprehensively, I had to fight for this blanket in my divorce. I gave up something seemingly more valuable to keep that blanket. My ex-husband knew how much I need it, how when I wrap myself in it, I can go back in time, for a millisecond, and join the toddler who reached for me, who was comforted by my hugs. That little white-blonde-haired boy could trade tears for giggles in those days, when we pretended we were in a tent or when I tickled his belly. I had such high hopes for that chubby-cheeked little boy.

Now I wrap myself in that blanket when unbidden tears just start rolling out of my eyes as I wait to hear if a residential placement is available. I know we both need it but the thought of going through with it makes me feel like I’m trying to walk but I’ve accidentally nailed my shirt to the wall behind me. Even though Caleb is an adult now, when I look into his sea-glass green eyes I see that baby. I see all we have been through together. And I know with a gut-twisting thud how very difficult this will be.

I wish that Caleb could be graduating college right now. That he had a girlfriend and friends who would show up suddenly for dinner. I wish that Amanda had had these past 20 years to spend with her mom and become all that she ever wished to be. I wish that Jamie was with her family, making them laugh and loving them with the love she lavished so freely. I wish Dan was here to joke with Lisa and hold his wife’s hand.

Physical loss causes the deepest intake of breath. Julia told me that she didn’t think she would be able to breathe after Amanda passed away. She told me she is surprised that 20 years later, she is still breathing. Anyone who has ever lost someone will recognize her next statement: “Love never dies.”

No matter the loss, the love always remains. Sometimes it burns like a cigarette on a favorite pillow. Sometimes it aches, like the ache I feel when I want to hug Caleb and he says, “Hands to self.” Sometimes loss just lingers like a shadow that follows wherever you go.

Loss is loss is loss.

My loss with Caleb is called autism. Autism is like an alien who sucks out all of the connective tissues of relationships and leaves dried-out limestone where there should be living, pulsing blood and love and sweetness passing between two people. I will always, always love my son. And I will always, always curse the autism that takes him away from me.

My family helps me with Caleb and they all tell me exactly what I tell them all the time: “Being alone in the house with Caleb is lonelier than just being alone.” He’s there and not there at the same time. You naturally expect an interaction of which he is not capable. He cooperates with bathing, asks for meals and declares when he’s going to bed. Sometimes he will sit and color quietly next to me while my mom and I play a game, but mostly he stays on the top floor of our house, which is explicitly his.

So what will the loss be like when he eventually moves out? He was out last night with his father but I kept listening for his giant-like footsteps and kept putting my foot on the first stair to go check on him. How will the house feel? Will it be hollow like the physical loss of a loved one passing? Will it just be too quiet?

I can’t sit with these feelings for too long or I will risk losing a day to tears on the couch. Sometimes a day is okay, but sometimes the depression pulls and anchors me and it’s very hard to claw my way out.

Loss wears many faces. It comes for everyone in one form or another. The only way to diminish its soul-scarring effects is to talk with each other. Keep Jamie and Amanda and Dan alive by sharing stories and letting memories warm our hearts like gentle spring sunshine. For Caleb, I find other moms in my situation and we turn tears to laughter, which heals instead of drains.

Loss is a part of our existence, but the enemy of loss is love. Love makes loss retreat, so let’s love as hard as we can, as fully as we can, whenever we can.

Photo credit: Stocksy United

This blog is lovingly dedicated to Jamie Price Harkins, Amanda Williams and Dan True.

Don’t Be Me

June 19, 2019August 18, 2019Kate WelchLeave a comment

I have always been an overachiever.

Take last week. I am not quite 50 but was diagnosed with shingles. In my eye. Because, go big or go home, right?

Shingles is directly related to stress, which has been a constant unwanted companion since 1996 when my Caleb was born missing part of a chromosome. I’m sure there was stress before then. I know everyone is under stress. Stress can’t be quantified or compared or broken into any kind of functional test. However, the stress of being the mom of a special-needs, medical-fragile child is in its own category.

Recently, when I applied to have my now 22 year old precious, wonderful, amazingly strong son put on a list for residential housing, I was astounded to find out the criteria.

My doctors had to write why I was physically incapable of caring for my son.

I have moved 23 times, all over this glorious country, but in this particular state, there is a shockingly absurd lack of housing for those with special needs. A few years ago, a friend’s son was going through a two-week period of no sleep due to bipolar mania. She sought help from a developmental pediatrician we both revered. Unfortunately, even though the doctor did her extreme very best, there were only six beds available in the state for mental illness on that particular day. They were gone before she could apply.

My friend did all she could. She took her son home and lived through five more days of no sleep for her, her husband and their adult child.

There is something horribly wrong with this outcome.

When I asked three of my doctors to write letters for the state to place my son on the critical waiting list for housing, I figured each would write about one condition. To my horror and shame, the three of them came up with 19 health conditions that were debilitating, stress-related and a few of which will eventually prove fatal.

My first instinct is always to protect Caleb. He is my baby. He is my responsibility. He is a young man trapped in a 6’2” body that weighs over 240 pounds. He will keep progressing but will never be an actualized, functioning, independent adult. My deepest fear, the one that wakes me in sweat, shaking at 2:00 AM is that I will die and he will be placed wherever a bed is available, without me being able to help it feel like home. I never go back to sleep after those wakings.

So I sent the letter. We got approval to be on the list. After two tries, we found a wonderful, peaceful, loving, perfect home. Caleb had to complete a two-part TB test, which I initiated immediately. I began to decorate his new room in my head. I was planning how to help him through the transition and figuring out the best way to present this life-changing event to him.

But.

The night I chose the house and began the procedure, I cried for six hours straight. I feel like a failure to my child. I feel like I am abandoning him. I feel like I am abdicating responsibility.

Then, deep in my conscience, a shadowy finger beckons me and reminds me that I am providing for Caleb, for when I won’t be here. She reminds me that he is a young man and should have a life of his own. She reminds me that it will be best for both of us for him to establish his own life, with frequent visits and constant reassurance that he is so loved.

The morning after the six-hour tear session, my eyes were swollen, but I chalked that up to all of that awful sobbing. I figured I injured my eye with the violence of those tears or perhaps caused a stye.

Six days later, I woke up to an incredibly angry right eye. If I were to try to post a picture, I would need that technology which shades the picture, with a picture box warning that the image would be graphic. It was horrifying, truly, to see my eye closed by red and purple swelling that was so heavy I couldn’t open it.

Again, I figured I had some sort of eye infection. I was fortunate to get an appointment with an ophthalmologist that day. He walked in, asked me if it hurt to brush my hair (how the heck could he know that???) and when I replied that, yes, it did, he put some drops in my eye, looked at them through some device and calmly said, “You have shingles in your eye. You might go blind in that eye. Here’s some medicine.”

He tried to leave the room but I am a bulldog after challenging Caleb’s doctors for 22 years.

“What should I look for? How can I prevent blindness?”

He replied, “Take the medicine and come back Tuesday.”

My mom was with me. I looked to her and she was crying. The nurse wouldn’t meet my eye.

“One more question,” I asked, causing the doctor to sigh and hold his hand on the door but not fully open it.

“What caused this?”

“Have you been under stress?” he asked.

I laughed and said, ‘a little.’”

“There you go,” he replied, finishing his grip on the door and walking out.

I was numb. Now it was 19 conditions. When is it enough?

A-ha, but there’s more.

The next day, Caleb’s caseworker called to tell me that the wonderful, perfect home that had opened up for him was now not available due to funding. My world fell down around my feet like deflated balloons.

I have worked with a Theta Healer for a few years. When Western medicine can’t help me, I go to her. She’s like a therapist on steroids, who uses prayer and incredibly probing questions to ferret out the cause of an illness or condition. She speaks to the theta waves in the brain to help your brain heal your body. I always leave her office feeling healthier and ready to fight whatever is ailing me.

Three years ago I was struggling with Epstein-Barr, a virus that caused me to sleep 14-16 hours a day. There is no cure. I’ve read first-hand accounts of some people who never get over it. I had a few sessions with her and was able to resume my normal life.

So I called her with this situation and saw her a few days ago. I explained all that was going on. She listened, and then quietly looked up.

“So you think that in order to not have to care for Caleb, you must be sick. And you keep getting sicker and sicker to prove that point.”

BAM.

There’s that old, cloying adage that parents don’t get sick days. Looking back over the past 22 years, I can now see that sometimes I would run myself down trying to be the perfect parent at all times. I would then get so sick or need surgery or completely fall apart instead of just taking some time for myself. I felt time for just me was selfish, just as I fear that letting my son live in a residential home is selfish on my part.

How many of you feel that way? You don’t have to be the parent of a child with special needs to feel this. You don’t have to be a parent. You could be caring for your parent, or a spouse or a sick pet. You could be someone with a job you don’t feel you can step away from. It can be anything that demands your full attention and siphons away any time to care for yourself.

Allow me to be the unwitting example of what can happen if you neglect yourself. When I do find the right place for my sweet son, I will go into mourning but after that, I want to watch myself carefully and see how many of these health conditions improve or disappear. I’ll be my own scientific study.

But it’s not too late for you. I know we can’t all stop whatever we are doing but we can take little steps to care for ourselves. One option is to learn how to breathe. I am at fault for constant fight-or-flight breathing, which causes toxic amounts of carbon monoxide to build up in your lungs. It’s all about the exhale. There are videos on YouTube and apps that help you learn to breathe.

There are also apps that offer three-minute meditations. My favorite is Headspace but there are plenty to choose from. I used to steal three minutes to hide in the bathroom from my screaming toddlers–and scream as loudly as I could into a towel so I wouldn’t frighten the little ears pressed so tightly against the doors. I wish I’d had an app then to help me make that time productive.

Found time is a treasure but we can all step outside for a breath of fresh air. Twenty minute naps flood me with energy to meet the day. Holding a cross or a crystal or whatever brings you peace can help too. I know these are tiny steps but I believe that taken together they can have a profound effect on your health over the years you may be battling stress.

The distilled message here is find something that brings you joy and peace. From there, you will gain the strength to do what you need to do. You will also strengthen your precious soul, mind and body and hopefully end up healthy before you rack up conditions that will weaken everything you need to be everything you are.

Photo credit: shutterstock.com

Unmeasurable Progress, Part II

June 12, 2019Kate WelchLeave a comment

On January 18, 2015, I wrote the first part of this blog entry. I talked about the tools professionals use to measure Caleb’s progress and chart his intelligence. I also talked about how Caleb has his own tool box and that his is the only one I really care about.

A few weeks ago, I was having coffee, watching the Today show while Caleb waited by the front door for the bus. Queen Latifah was being interviewed and was asked to name her favorite karaoke song. She belted out a few verses of Bon Jovi’s You Give Love a Bad Name. Cut to two seconds later and Caleb had found the song on my phone and was playing it. I keep saying how intelligent he is–despite what our conventional intelligence testing keeps trying to tell us.

Caleb has a diagnosis of hyperlexia, which means that he memorizes the shapes of words, rather than learning them phonetically. I was initially alarmed at this diagnosis, but the therapist we were working with quickly assured me that 90% of what typical adults read is sight reading—the same theory as hyperlexia. Most words we read often we don’t even bother to sound out. We just understand them and move on.

What Caleb has learned to do is memorize song titles from the XM console in my car. He then comes home and plugs those letters into YouTube and listens to his favorite music. He does the same thing with DVD titles, finding clips of his favorite parts of movies on YouTube.

If you meet Caleb, he will immediately ask you three questions: 1) When is your birthday? 2) What kind (brand) of car do you have? And 3) what color is it? When he was very young, he memorized all of the logos of cars and could recite them perfectly. He did this for years before I caught on. And more often than not, he will later remember the birthdays of people he has asked.

Years ago our geneticist told me that autopsies of those with 22Q Deletion Syndrome show that their brains have white matter where there should be grey matter and vice versa. What this translates to is that Caleb has cul-de-sacs in his mind where we have freeways. Some information can never get through.

But… he has found this workaround, this marvelous workaround to help him function in the world. He knows every month by name and loves to change the calendar. He often wakes up at midnight and changes all of the calendars in the house. He understands how to work my iPhone and his iPad with startling speed. He completes 500 piece puzzles in minutes and he does word searches like no one I’ve ever known.

Last year, Caleb was asked to join the Greenville Greeters, a group of people of all ages with disabilities who attend his day program with him. This group goes to corporations, where they wave and shout with great enthusiasm to welcome people as they arrive for work. I could never have conceived of such a joyful use of Caleb and his friends’ social talents. The Greeters website states: “This interaction fosters communication, breaks down barriers and can be informative and transformative to those who participate.”

Caleb has learned to adapt and thrive in our world, which many people, including myself, often find incredibly difficult to do.

I’m writing this for those other parents out there, the ones of young children who have recently been diagnosed with 22Q or any other disability. I’m writing for any parents-to-be who have been told there is something wrong with their baby. I want them to know that there is learning in our babies’ brains, even if it can’t be stripped down to an IQ score or reading level. There is no way to know what strengths your child will be born with, what personality traits they will have that can lead them to find their own workarounds. There will be challenges, some that will knock you to your knees, but there are also miracles waiting to unfold before you like swan wings.

Just this week at the Tony Awards, Ali Stroker became the first actress who uses a wheelchair to win the award for Best Supporting Actress in a Musical. She is the first actress with a disability to win a Tony Award ever. Paralyzed in a car accident at age 2, Stroker didn’t let her physical disability dissuade her from pursuing a career in musical theater. In my life, I’ve let lesser dreams die due to my own laziness, so I am humbled and enchanted by Stroker, who said in her acceptance speech, “This award is for every kid watching tonight who has a disability, who has a limitation or a challenge, who has been waiting to see themselves represented in this arena,” she said. “You are.”

Stroker has said, “When I began to sing, I just felt so free. There was like no limitation.” For her, and for so many of us, along every ability level of humanity, music is a conduit that frees our souls and fills our minds. How lovely that Stroker is being recognized for her remarkable talent.

Last week on America’s Got Talent, Kodi Lee, a 22 year-old young man who is blind and has autism, awed the judges and audiences everywhere with a spot-on performance of A Song For You by Leon Russell. He not only sang in perfect pitch, he also played along on piano. Lee’s voice and performance would have been remarkable on their own, but knowing how much he has had to overcome in his life, he took my breath away. The audience and judges stilled, so I know it affected them as well. Gabrielle Union even awarded him the coveted golden buzzer.

We will have gained so much when we leave out of Ali Stroker and Kodi Lee’s descriptions that they have a disability of any kind. We will all be richer when we realize that we are all part of this wonderful, tragic, magical, heartbreaking ball of humanity that loves and cries and laughs and fears. Distilled by whatever labels others wish to impose, we are all brothers and sisters.

When I was pregnant with Caleb, his older sister Sophie was still a baby. During pregnancy and her infanthood, I played lots of Vivaldi, Yanni (groan all you want but I still love that music), Kenny Loggins’ Return to Pooh Corner and various pop songs on the radio. I had read that music in the womb makes for a smarter baby. So I played music constantly.

Sophie went on to play the viola wonderfully. She met her husband Al, also a violist, in her high school orchestra. She was fortunate enough to play at Carnegie Hall on a high school field trip. She plays guitar and sings like Joan Baez. Whenever she would practice, Caleb would sit outside her room, his back to the wall next to the door, and just listen. For hours. He absolutely loved her concerts.

Sophie later told me that Caleb especially loves music played in the key of G. I’m not a musician but after she told me that, I could hear similarities in the music he loves. I have no doubt that if Caleb’s brain was not affected in just one spot, he could have been a great musician like his sister.

When Caleb heard Queen Latifah singing and found that song so quickly, I was flushed with the realization that music has plowed through one of those cul-de-sacs in Caleb’s brain, crumbling it into a dusty pile of old bricks. Music allows him to muse about his emotions and communicate in ways his mind can’t on its own. Like Ali Stroker stated, music makes him feel free.

There are so many ways we connect as humans. Language is the largest, and therefore the simplest way that we try to measure intelligence and progress. Music, in its composition, boils down to math, with the construction of tempo and notes. Math is a language that we always use to measure intelligence. Therefore, my Caleb, and those like him who understand music deeply in their minds, might be the most intelligent of all of us.

I don’t think we could ever begin to try to manage to understand or measure that kind of progress.

To learn more about the Greenville Greeters, click here: Greenville Greeters

To watch Ali Stroker’s Tony Awards acceptance speech, click here: Ali Stroker’s acceptance speech

To watch Kodi Lee’s AGT performance, click here: Kodi Lee AGT

Photo credit: Better Homes and Gardens

The Fallacy of Eyesight

February 10, 2019February 10, 2019Kate Welch2 Comments

Caleb has had a favorite song for over six years, Matt Redman’s Blessed Be Your Name performed by the Newsboys. I will share a few verses in a minute but something just happened that I have to tell you about.

We have an Alexa device that doesn’t understand Caleb, so he asked me to request the song while he was eating lunch.

I made his favorite macaroni and cheese, mostly tuning out the first part of the song that I have heard a million times.

These verses are out of order but I’ve grouped them so you might understand Caleb’s reaction.

Every blessing You pour out, I’ll
Turn back to praise
When the darkness closes in, Lord
Still I will say… Blessed be your name

Blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

It’s so easy to assume that just because Caleb can’t always express emotion that he can’t feel everything like we all do. This is a fatal misunderstanding.

As the song ended, I went to get his plate and cup. He was wiping his eyes. Caleb cries like many young boys I have seen. No tears actually fall, but his eyes turn red and he pinches the bridge of his nose with his thumb and forefinger, trying to keep those tears from ever escaping.

Though not frequent, I know it signals something profound. I know he is feeling pain that is usually suppressed. I don’t know where the sadness goes and it hurts to think of him keeping so much pain inside instead of letting me or someone else help.

Caleb is one of the happiest people you will ever meet. He loves all things light and funny and when something tickles him, he roars with a deep belly laugh that crescendos into a high pitched squeal. He and my boyfriend have more private jokes than I’ve had in a lifetime. Caleb often laughs at nothing at all. He seeks joy constantly. He abhors sadness and anger.

When I saw him wiping his tears, the words from the song hit me like ice.

God you give and take away
Oh you give and take away
But my heart will choose to say
Lord, blessed be Your name

When it ended, I asked, “You love that song, don’t you, buddy.”

Through red eyes, Caleb replied, “Yeah.”

“Why is it your favorite,” I asked.

His answer shattered me

“The story of my life.”

Caleb does love The Story of My Life by One Direction, I believe for the same reason he loves Blessed Be Your Name.

Come closer to hear how profound this is. Caleb tests cognitively around age 5 but I believe he is much more advanced and that standardized testing isn’t sensitive enough to truly measure cognition. We don’t have the tools to measure intelligence that doesn’t fit into neat little boxes. We are missing out on so much by dismissing those who can’t ace an SAT or IQ test.

I’ve actually gotten angry with professionals who tell me Caleb’s IQ. To one, I said, “How about we give you an IQ test in Mandarin right now?” But I digress.

I see Caleb’s insight and intelligence in how he has analyzed and interpreted these two songs. It confounds me because the theme of both songs is a deep philosophical musing about one’s life. The lyrics require the listener to reflect and to search for an answer about why things happen. They require the listener to accept that which we can’t change.

One of Caleb’s challenges is that his diagnosis of 22Q chromosome deletion syndrome greatly impacted his brain. In this syndrome, there are already assumed learning differences and often some form of mental retardation. A geneticist told me years ago that when autopsies have been performed on someone with 22Q, in their brain there is white matter where there is supposed to be grey matter and vice versa. He said that where you and I have freeways, Caleb and others like him have cul-de-sacs. Some information can never, ever get through.

Imagine living a day like this. Knowing something, wanting to answer a question, wanting to ask a question, wanting to express anything only to have it blocked by your brain. It would be worse than that awful feeling of having something on the tip of your tongue. I can’t conceive of the level of frustration and hopelessness that must plague Caleb every minute of every day.

In addition to the issues from the syndrome, Caleb had open-heart surgery at four days of age. During surgery, the medical team had to stop Caleb’s circulation and keep his brain on ice for four hours, ending with a full blood transfusion. I’m not a doctor but I’ve read articles that insinuate that perhaps Caleb’s surgery went too long, that his brain was deprived of oxygen to the extent that significant mental retardation was the result. I don’t blame the doctors. I wanted my baby, in whatever state they could return him to me.

Caleb suffered several febrile (high fever) seizures until he turned five. A 105 degree fever overwhelmed his system and a seizure was the way to bring his temperature back to normal. During them, he would turn blue and it would seem like he wasn’t breathing. I believe those contributed as well.

I’ve written how, in 2006, Caleb broke his femur at school. Surgery followed that afternoon and when I could see Caleb again, he was burning up. His body can’t regulate temperature and I believe his fever was 107. Though he was past the age where he would have a febrile seizure, Sophie and I believe he had several seizures that day, perhaps in surgery and in the recovery room. Again, the doctors did all they could and I place no blame. I wanted to get my baby home.

If you look at pictures of Caleb before and after the femur break, it’s as if you can see a dimming in the light behind his gorgeous baby blue eyes. It’s permanent and such a startling change. There are moments where he is especially engaged and you can get a sweet glimpse of who he could have been without this syndrome. Friends call it 10 seconds of typical. It gives me such hope and I yearn to wrap him in bubble wrap so the typical boy never goes away. But it recedes like a tide and is just as difficult to chase.

I share all of this about Caleb’s mental condition so that you may understand that Caleb crying today over a song was actually him screaming out that he knows his life has been difficult, and that he accepts it. Socrates would be so impressed that Caleb knows his precept: “The unexamined life is not worth living.”

So many people underestimate Caleb and those like him and I’m writing this to shout that these marvelous people know. There is sentient, deep, reflective, insightful intelligence locked inside someone who looks inferior to many people. Please, when you see someone challenged, wave if they look like they’d like it, smile if it looks like they may smile back, or simply ask for a blessing for them as you pass by.

We were at Wal-Mart today and Caleb saw row after row of Valentine’s Day heart boxes. I usually pick one out for him, but he was so excited I told him he could pick his own. He roared his happy growl with that squeal at the end and a Wal-Mart employee smiled so engagingly at him that I said, over my shoulder, “Thank you so much for thinking that was cute.”

“But he is cute,” she said.

“I know,” I responded, “but I love when others see it too.”

Even though I’m focusing on what Caleb can express, there is something more painful with which he has to deal. Caleb, I believe, understands everything. He’s teaching himself to read by memorizing song titles and then typing them into his iPad. He’s mostly quiet, but he’s taking in all of the conversations around him, even things I don’t want him to hear.

I’ve been writing about the denial we received for Caleb to live in residential housing. I filed an appeal a few weeks ago, in an eight-page single-spaced plea to our state’s DDSN board. This week I received a letter from the state director, telling me that she read my appeal and is overturning the denial and placing him on the waitlist, for which I am eternally grateful.

Caleb has been picking up on all of this new language about a home. I haven’t told him directly because there is nothing available at this time. Telling him now would only fill him with anxiety and fear that don’t have an end-date. I will only tell him when a decision has been made.

I know it will be so difficult for him at first but I also know that he will thrive in a structured setting with friends and a caretaker. It will take time and if it doesn’t work, I’ll bring him back home if I am physically able. From all he has gleaned from overheard conversations, I know he can sense a major change on the horizon.

So this is the final verse of the song that muses on good times and hard times, triumphs and challenges:

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name

My amazing Caleb lives a life of complete trust in God. I’ve never seen a more pure example of a good and faithful servant and I’m grateful, humbled and beyond blessed to be his mom.

Photo credit: Medium

Run

January 27, 2019March 27, 2019Kate Welch4 Comments

This life as Caleb’s mom has honed me into a devout Christian. I am also a firm believer in karma and the law of attraction. I wish I could only attract good, strong, happy things but sometimes negative just attracts more negative.

A few weeks ago I wrote about trying to find a residential placement for my precious Caleb. I threw in a story which mentioned a sacral dimple that he had in 1997, when he was six months old.

Last week, I found another one. A bigger one that was bleeding. Karma, law of attraction or simple coincidence? I’m not going to speculate. I’m too busy learning how to care for this new disease.

For those so inclined to know this rather icky condition, it is a small depression in the crack of one’s bottom.

One has existed for 22 years. I don’t know when this new one formed or when it ruptured. Yesterday, I found the smallest and newest, above the other two.

Special needs moms will understand the fatigue of which I am about to write. The need to press doctors to please do something—send us to a specialist, write a prescription, give me a diagnosis, anything that will help make sense of something new and terrifying.

Last week, after pushing for a quick appointment instead of one in a month, we saw a colon and rectal specialist who diagnosed Caleb with pilonidal disease. Not uncommon but not common. Just like Caleb.

The doctor calmly listed the care for this condition. He listened to every question and patiently answered every one. He told me if Caleb gets a high fever, this condition will likely be the cause and he will need to come in immediately to have it drained and begin a course of strong antibiotics.

He told me to stop using soap on Caleb’s back. To keep the area trimmed of hair. To apply diaper rash ointments or creams because the one that ruptured last week was certainly painful to Caleb who never, ever complains. Once more, I had failed my son because I didn’t know of a struggle he can’t communicate.

Like all of our other wonderful doctors, this doctor doesn’t know that he just added that one extra card that collapses the house.

I hear an echo in the recesses of my exhausted brain. It whirs around like confetti. Isaiah 40:31 But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Papa, it’s so hard and I’m so tired.

My child, I already gave you the words and my promise for this situation: Run the race with perseverance.

But it’s so hard. And I’m so tired.

Run. With perseverance.

But…

Run.

When we arrived home from that appointment, the charging cable for Caleb’s iPad broke. It’s his favorite thing in the world so, already upset from the examination, he became angry and agitated that he couldn’t keep the iPad charged at 100%. OCD can be very cruel to someone who already struggles with so many issues.

While I was ordering a new cable online, his case manager called to tell me that his application for residential placement was denied. Again.

I will never understand why, in our life and everyone else’s, when one thing goes wrong it seems like an invitation for other things to go disturbingly awry as well. Law of attraction?

Papa, it’s so hard and I’m so tired.

I often wake right at 2:00 in the morning. I desperately try, like my mother has taught me, to thank God for all of the good in my life. There is so much, truly. I start, but then my mind starts to wander.

What if, after all of this fighting, Caleb ends up in a place where they are not kind to him? What if they don’t notice a small hole in his back and he becomes really sick? What if he wakes in the middle of the night and has no one to comfort him and try to talk him down from a nightmare?

I hear, in those recesses, words that fight to be heard among the chaos, Psalm 46:10: Be still, and know that I am God.

I don’t doubt these words. I know them and breathe them and feel them in the marrow of my bones. But like Peter, my absolute favorite Saint, I find myself panicking in the Sea of Galilee when the water turns rough. I find myself hyperventilating in the garden at Gethsemane. One minute, I’m cutting off the ear of a guard, the next, denying Jesus’ existence, devoid of the faith that had propped me up so well a few hours ago.

I suppose that’s why it’s called a walk of faith. It’s not a cruise. It’s not a romp. It’s a walk, along a rocky, lonely, painful, and questioning path.

Please don’t misunderstand and think for a moment that I’m not acutely aware that this path is primarily Caleb’s. He is the one who has to withstand physical and emotional pain, misunderstanding and living in a world that makes so much less sense than one he would design for himself. I know.

This morning I was working out at home. A struggle for sure, but I was giving it my best effort. About 35 minutes into a 45 minute DVD, Caleb came down and said, with calmness and deliberation: “I need help with my TV. Please.”

These words are a Herculean effort for my son. He typically expresses his wants and needs with as few syllables as possible.

Because this request was so eloquently stated, I paused my DVD and went upstairs to Caleb’s private retreat.

Somehow, this young man whose true IQ can’t be properly measured had programmed his TV to only communicate in French (which I am fluent in, but couldn’t translate this morning) and to only display in black and white. He was pissed off.

I sat on his bed for 15 minutes trying to figure out how to rectify this situation. I am fairly technologically savvy and fairly fluent in French, despite what I said earlier. It was impossible to untangle this mangled fishnet.

I kept saying, as calmly as I could, with my muscles tightening from warm and ready to go to something resembling concrete, “I am so angry right now, Caleb.”

When I finally fixed the problem, I went to hug him and apologize for being angry. He kept his arms as his sides, like one of those toy soldiers.

“Hands to self,” he said.

Like so many phrases in autism, that one is a triumph and a defeat. It’s a triumph that he could communicate such a complicated phrase instead of just screaming. But it was also a defeat in the heart of a mom who was trying to issue an apology.

I have never, ever questioned why Caleb was given to me. I have always accepted that he was given to me, truly a gift, even if I don’t understand it. There are times I wear my role as his mom as a badge of courage. And there are times I cower on the bathroom floor, mascara running black tracks down my face, my chest heaving with sobs that probably should have been let loose back in 1996. Old sobs hurt as much as new sobs.

At the same time, I have relied on government programs to fortify my incredibly vulnerable son’s life. I worry and then worry some more that if something happens to me, he will be thrust into a life he can’t understand. I am confounded as to why they are fighting us so hard right now to help me secure his future.

There is, of course, another Bible quote to combat this worry fatigue. Matthew 6:25-27: Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

I groan, like any child. And I remind myself that my life is just a borrowed gift. So is Caleb’s. This time will fly by in God’s heart like a few moments. And I will understand everything one day.

Then, like gentle rain slipping down new spring leaves, I hear my brother tell me in Matthew 11:28-30: Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.

I slip the other end of my yoke over Jesus’ shoulder. He smiles at me and we begin the first steps of what will be a long run.

Photo credit: Medium.com