My daughter Lilly had an appointment with her new pediatrician the other day, and what would typically be a 10-minute appointment took twice as long because I had to explain what exactly her diagnosis was.

I should say “our diagnosis” because both of us, as well as my youngest son, have a very rare genetic condition called Oto Palatal Digital Syndrome. It affects less than 1 out of every 100,000 people.

Because of this, I usually need to tell the same lengthy story to every new doctor or clinician we see, because we are always the first (and most likely the only) people they will see with this condition in their career.

Most of the time, I don’t mind. I love educating people, and what mom doesn’t like talking about her kids?

There are some times, however, when I start to feel like a broken record, such as during panel appointments, where we see a revolving door of clinicians and have to tell the same old story multiple times, to numerous people, for hours. When you have to give a detailed medical history for the 6^th time, after waiting in a small exam room with two kids who are just over it and want to go home, it gets a little weary.

Sometimes I’m not in the mood to educate people, such as the many times I’ve had to bring one of the kids to the emergency room for one reason or another. It’s pretty much guaranteed that whatever doctor we see will have never heard of OPD.

After a couple of late-night  E.R visits (because of course, that’s when most of our emergencies happen), and trying to give a crash course in “OPD 101” while sleep-deprived, frazzled and worried,  I started printing off information about our condition and handing it to whatever doctor we were assigned to.  That way, they could get accurate information, and I could focus on my kid.

As the kids get older, their stories get longer and more complicated. As a parent of children with multiple medical issues and diagnosis, it’s hard when you feel like you have to be on “educate mode” all the time, especially if you’re feeling like a hot mess at the moment. Still, I will always do the best I can to advocate for my kids and enlighten others no matter where I happen to be.

It’s strange how times of darkness can shed light on so many things. I’ve seen my share of ignorance and ableism in the last thirteen years of being a parent to children with multiple disabilities, but I have to say it’s unreal the number of people that have been showing their true colors since COVID-19 came on the scene.

I’ve never unfollowed or blocked so many people on social media as I have in the last four months. In a way, this pandemic has been a blessing because I’ve been able to weed out the people that have made it evident that they think people with chronic medical conditions are somehow expendable.

Almost every day, there is at least one person in my newsfeed commenting on a recent COVID-19 related death with something along the lines of “Well, they were older/ had (fill in the blank condition).” Because somehow that makes it “ok” for them. It validates their narrative, which is that they have nothing to worry about because they are not old or sickly.

I’ve been hearing the same thing for months. “It’s only the elderly and people with underlying conditions that have to worry.”

It’s only them.

It’s only people like my children. Like my son with chronic lung disease, who has ended up in intensive care after catching “a simple cold.” Like my daughter, who has intellectual and developmental disabilities, two diagnoses that have both been documented not to fare well with COVID-19. It’s only someone’s elderly or chronically ill loved one.

I’m not sure people realize how much weight the words “It’s only” have, or if they ever will understand unless they have a loved one that falls within that criteria.

Somehow, justifying the horrific outcome that COVID-19 could have on some of our most vulnerable population has become acceptable.

People with disabilities have routinely been marginalized and even thought of as disposable by some, but suddenly, it’s become clear just how many people believe that the medically fragile are somehow acceptable collateral damage in this pandemic. It’s depressing and sad, and it’s yet another reminder that we need to fight even harder for our kids.

When people say, “Only the vulnerable will be at risk,” I wish they would realize that for parents like us, their “only” is our “everything.”

Eleven years. That’s how long our potty-training journey has been.

It started when our daughter Lilly was about two and a half. She had recently been diagnosed with autism and intellectual disability, and she also has multiple medical issues stemming from a rare genetic condition. We knew it would be a rough road, but we never anticipated precisely how long and how bumpy that road would be.

She resisted with every fiber of her being when we tried to persuade her to use the toilet. We bought a little step stool, and later a cute little princess potty. She wasn’t having any of it.

It took years before she was even able to communicate that she had gone in her diaper, and even that wasn’t consistent.

We had the same issues with our son, Chance. He also has the same rare condition that Lilly has. Although he doesn’t share her diagnosis of autism or intellectual disability, he has plenty of developmental challenges of his own. We bought him a little frog potty chair when he was about four years old because he had expressed a little interest in using the toilet, but he was so tiny it was hard to get himself situated on it, even with step-stool and a toilet insert.

Even though the frog potty never got used for the purpose for which it was intended, it was well-loved. He loved putting small toys in it and carrying it around the house. I even found him taking a nap in his toddler bed with it one day. Each time we attempted to potty train, it ended up backfiring, and we felt defeated. We would drop it for a few months and then begin again.

I knew they were both capable of toilet training; I found out from their teachers a couple of years ago that they were occasionally sitting and going in the toilets at school…so it was frustrating and baffling to us that they had no interest in doing it at home no matter what we tried.

Fast forward to late last year, right around Thanksgiving. Chance started requesting to wear underwear. We told him that he needed to show us that he could go in the toilet every time he needed to go to the bathroom.

“Even poop?” he asked.

“Yes. Especially poop!”

It took a few days of trying and a promise of brand-new underwear with the character of his choosing, but he finally did it.

In January, we moved to a new house, and Lilly regressed a little bit. We had finally gotten to a place where she would go pee in the toilet, but she started going in her diaper again and not even telling us when she had gone. We figured it was back to square one.

About a month after the schools closed due to COVID-19 precautions, something shifted. One day she just decided to put on a pair of the new underwear (from a previous potty-training attempt) that has been sitting in her dresser for months, and she has been diaper-free ever since.

We still have to clean up the occasional accident. They both still need to be continuously reminded about good hygiene practices and prompted to clean themselves thoroughly, but overall, it has been fantastic to see them hit this milestone.

I know some may think this is oversharing, especially given their ages (Lilly is almost 14 and Chance is 9). I usually don’t write or post too much about sensitive issues like this regarding my kids’ disabilities, but I think it serves as an important reminder that our kids will hit some milestones in their own time, on their own terms, when they are good and ready. Never lose hope!

Last year I wrote a blog about caregiver PTSD; a very common, yet unacknowledged phenomenon that occurs in parents of special needs kids.

I talked briefly about the medical PTSD aspect that affects two of my children, but there was, and is, so much more to say.

I don’t think I have met a child who is not afraid of the doctor at some point.

I remember hiding under the exam table when I was little, wishfully thinking that the doctor would open the door, think I wasn’t there, and leave me alone.

That fear subsided as I got older and more mature, but for kids with medical PTSD, that fear almost never goes away.

Many people mistake Medical PTSD for anxiety, and not to minimize the effects of anxiety, but this is something totally different.

Medical PTSD, from my own experience with my kids, can actually cause anxiety that spills over into other aspects of their life.

Medical PTSD is melting down the minute we enter a medical office of any kind; the smells, the atmosphere, the scrubs all bring back traumatic experiences of being hospitalized numerous times, the pain of recovering from many surgeries and being poked and prodded too many times to count.

Medical PTSD is not even able to examine my child properly in some instances because they won’t, and can’t calm down long enough. We have to have all dental procedures done under general anaesthesia because of this.

We try and combine dental work with other procedures that require anaesthesia to minimize stress and recovery time.

Medical PTSD is regressing emotionally after every hospital stay, every procedure. Sometimes it takes days to bounce back; sometimes, it takes weeks.

Medical PTSD is being scared to let Mom or Dad out of your sight when you are in the hospital, even at 8 years old, even if it’s just when they run to the bathroom, to sneak Ninja style out the door once your child falls asleep so you can do a cafeteria run or grab some much-needed coffee.

Medical PTSD is seeing absolute fear come over your child’s face at the mention of going to the doctor’s, even if the appointment is not for him.

Medical PTSD doesn’t only take a toll on the child who suffers from it; it affects those close to them as well.

Parents and caregivers of children with Medical PTSD experience their own form of distress, watching their kids go through all that they do.

So, to all the parents and caregivers of medically fragile kids out there: I see you, I get it, and you are not alone.

I had a conversation recently with a fellow Mom of a special needs child that really hit home. The conversation revolved around how our perceptions of what is “normal” have changed so drastically since having our kids.

It made me realize more than ever that “normal” is a relative term, and each person; each family has its own version of what is normal and what is not.

The fact is that every family has their challenges; some are just more obvious than others.

I came up with a list of things that we consider to be our version of normal. I’m sure you all have a list similar to this one. These things may be considered unusual, but they have become a way of life for us.

You mean it’s not “normal “:

To have toys lined up on the windowsill, TV stand, and floor. All the time.

For your garage to look like the medical version of the TV show “Hoarders.”

To think that 4 straight hours of sleep is refreshing

That our car looks like we packed for a vacation just to run a few errands

For your living room to resemble a mini-hospital

To be woken up by beeps from a pulse ox machine rather than an alarm clock

To forget what “spontaneous” looks like.

To have to drive more than two hours for doctors’ appointments because your child’s specialists are all out of the area.

To feel like it’s Christmas when you get approved for a new piece of adaptive equipment.

To have a hospital-ready bag packed at all times.

To have to constantly educate people about your child and their condition.

To have massive anxiety when cold and flu season rolls around.

To have to scout out unfamiliar places before attempting an outing to check for possible triggers that might cause a major meltdown.

To have a file drawer dedicated solely to your child’s medical records, IEPs, and other diagnosis-related paperwork.

I know that sometimes it’s hard to see other people’s “normal” and even sometimes be envious. One of my favorite quotes is from former US President Theodore Roosevelt; he said: “comparison is the thief of joy.”

I know that for many of us, our version of normal may not be what we planned for our lives or our kid’s lives, but I also think it’s one that we should embrace as best we can.

 

Vaccination has been a hot topic here in the United States in recent months as measles cases are popping up across the country.

As of June 27^th, there have been 1095 cases reported, and no doubt there will be more.

State legislators have been introducing, and passing bills that tighten limits on vaccination exemptions and the people who disagree with vaccination have been extremely vocal in their opposition.

I have always been pro-vaccine, and I was honestly curious as to what made people so adamant; even militant, in their opposition.

So, I did some digging and found myself down a rabbit hole late into the night on a few occasions.

One of the most pressing arguments against vaccines has always been that they cause autism.

Despite the fact that this has been widely debunked, that fear has stuck with people over the last two decades.

I came across one website which featured a man wearing a red baseball hat with the words “Make Autism Go Away.”

It was designed the same way as the MAGA hats that President Trump supporters wear, and at first, that is what I thought it was.

Out of all the anti-vaccine stuff I had come across, this one affected me the most.

My 12-year-old daughter has autism. She was diagnosed at age 2.5, which is the average age of diagnosis.

This is also the time span in which children receive their MMR vaccination.

I have had people assume that her autism was caused by her MMR shot, but the truth is that she was diagnosed before she even received it.

We had put it off several times due to illness, so she was actually behind schedule on some of her vaccinations.

Besides being ableist, the “Make Autism Go Away” statement is a little deluded.

Autism isn’t going anywhere. Autism has always been around.

Leo Kanner first described autism in 1944, but since it had never been an official diagnosis before, it’s prevalence before this was zero.

There have always been people with autism, but they most likely were written off as “insane,” and I imagine many were hidden away or ended up institutionalized.

People with disabilities were frequently institutionalized well into the 20^th century.

In 1965, Kanner wrote that after he made his first diagnosis of autism, “almost overnight, the country seemed to be populated by a multitude of autistic children.”

Over the years, the diagnosis has evolved and broadened, which is one explanation of the uptick in autism cases.

Despite all the evidence to the contrary, there will probably always be people who avoid vaccinating their children for fear of autism, and a multitude of other reasons.

The anti-vaccination movement is relatively small, but they are loud, and the loudest voices can be quite persuasive, especially to those on the fence about vaccination.

I understand that an autism diagnosis is challenging and life is not easy, but making statements that people like my daughter need to “go away” because of something they have no control over isn’t helping at all.

Even if they are only talking about the diagnosis and not the person, the two are not mutually exclusive.

Educator, author, and professional speaker Chris Bonnello, who also happens to have autism has stated, “I don’t want to turn an autistic person into a non-autistic person. I want to help an autistic person who struggles to become an autistic person who doesn’t struggle.”

If only that charismatic energy that the people who preach against vaccination seem to emanate could be used to educate and advocate for people with autism instead of demonizing the diagnosis and using it to fear monger.

What a much better world it would be.

July is National Cleft and Craniofacial Awareness month here in the United States.

The term “craniofacial” refers to the parts of the head and face; a “craniofacial condition” refers to any disease, defect, or trauma resulting in the malformation of the head and face.

Cleft refers to an opening or split in the upper lip which happens when developing facial structures in an unborn baby don’t close completely.

A baby with a cleft lip may also experience a cleft in the roof of the mouth, also known as a cleft palate. Some children are born with one or the other, and some are born with both.

Cleft lips and cleft palates can usually be corrected surgically at a young age.

Craniofacial differences came into the spotlight in 2017, when the book “Wonder” by R.J Palacio was made into a hit movie.

It resulted in the “#choosekind” movement and a surge in awareness of craniofacial conditions, facial differences, and the people they affect.

Auggie Pullman, the fictional character in “Wonder,” is a representation of one of the approximately 600,000 people in the United States that are affected by a craniofacial condition or facial difference.

Two of my children and I are three of those 600,000.

We were born with a rare genetic condition called Oto Palatal Digital Syndrome with Pierre Robin Sequence.

This involves, among other issues, an extremely small lower jaw which compromises the person’s ability to breathe correctly. Pierre Robin Sequence is one of the 19 conditions classified as craniofacial by the Children’s Craniofacial Association of America.

Although these conditions vary widely in severity, the people that they affect all have some sort of noticeable facial difference.

When I learned that Wonder was being made into a film, I was a little bit leery. I was afraid that it wouldn’t do justice to the challenges that people with facial differences live with every day, and the struggles that many of us go through. I was also afraid that it would put people with facial differences up on some kind of inspiration pedestal rather than validate and celebrate our differences.

Usually, people affected by craniofacial conditions do not want to be the source of someone’s inspiration just because they happen to have a facial difference.

My hope with the release of the movie and “#choosekind” movement was that people would not only choose to be kind; they would choose to be educated.

So far, I have not been disappointed. There will always be the awkward stares and questions, but I would rather have blunt questions than for someone to make assumptions about myself or my kids.

Another awesome thing about the rise in awareness of craniofacial conditions is that it has allowed me to find a wonderful online community of people with the same diagnoses of OPD.

A couple of years ago, I had almost given up on finding anyone else with the same condition, but now I have found a group that understands myself and my kids in a way that no one else can.

Everyone with a cleft or craniofacial condition deserves to be celebrated.

Each one has a unique story, and many of us would be glad to share- all you have to do is ask!

Before our youngest son was born eight years ago, cold and flu season didn’t seem like too big of a deal.

Each of our three kids usually came down with at least one cold during that time, and when April rolled around and the season was over, we breathed a little sigh of relief.

And then Chance arrived and suddenly cold and flu season became year-round for us.

After going into acute respiratory failure at two days old, Chance was placed on an Extracorporeal membrane oxygenation (ECMO) machine.

This treatment uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill person.

It provides heart-lung bypass support outside of the body. It looks as scary as it sounds and is very much a last resort type treatment.

He survived this, only to contract a staph infection in his lung, which required weeks of IV antibiotics and left him with compromised lungs from all the trauma he’d gone through.

Over the next few years, he was admitted to the hospital at least twice a year for respiratory issues. He would stay anywhere from a few days to two weeks.

Many of those stays required him to be on a ventilator, and all of them started with a simple cold.

As he grew older, the hospital stays became less frequent, but we also learned the hard way that respiratory issues were not always confined to the winter months.

He was in the Pediatric Intensive Care Unit for a week in June of 2013 and just last August the smoke from the wildfires here in Northern CA led to pneumonia despite an air purifier in the house and wearing a filtered mask outside.

Chronic Lung Disease is deceptive and sneaky.

My kid can look fine in the morning, and by night time, his breathing is so labored we need to rush him to the ER. This has happened more times than I care to count.

It happened just a few months ago. He was acting like his usual chipper self at breakfast, but by 3pm was feverish and lethargic, and his oxygen saturation was lower than it should have been.

Chronic Lung Disease is like the dementors in the Harry Potter books; not only does it take my child’s breath away; it casts a gloom on everyone it touches when Chance is ill.

Every time he gets a cough, my mind goes straight back to seeing him hooked up to the ECMO machine; watching a machine doing his body’s work for him.

Sitting in the ER a few months ago, I was mentally preparing for admission and a possible med flight to a bigger hospital.

My mind always goes to the worst-case scenario now; I’m pretty sure it’s a defence mechanism.

That, or just straight up PTSD. This time we got lucky. He was diagnosed with pneumonia and sent home with antibiotics; we had caught it early.

Chronic Lung Disease will always be a part of our lives, and we will always be on edge every time a cold goes through the house or his classroom.

If there is a silver lining to Chronic Lung Disease, it is that it makes you slow down and learn not to sweat the small stuff.

It makes you aware of who you want to be surrounded by and who you would rather distance yourself from. It gives your perspective and shows you how resilient and strong kids can be.

It has also shown me how strong I can be as a mother, as it has forced me to make decisions I never dreamed I’d have to make.

It has also taught me how to advocate for my son and myself. Most of all, it has taught me that there are always life lessons to be learned.