Pediatric Neurology Waiting Room

We’re in the big waiting room of the neurology outpatient center.

Welcome to Neurology and Neurosurgery

I imagine high school interns made the bulletin boards for a service project. No amount of glitter letters from the Oriental Trading Company is going to cheer this place up.

It’s only 9:30 but the place is already packed. I forgot my breast pump in the car. Shit. Jim has already driven away with the other kids. Just realizing I am without it, I feel engorged. One more thing. One more thing.

No time for that now, I have to check in. Last night while half-watching 60 Minutes I suspiciously printed out the QR code receipt for pre-check-in. “Simply present this at the kiosk to confirm your arrival.” How did I know that wouldn’t work the way it was supposed to?  The desk staff, as usual, are sweet and courteous, but don’t know a damn thing about the kiosk, and I can tell that their morale is low because of it. I don’t blame them for being resentful of how these machines were installed without warning, so now they are forced to train customers on their mechanical replacements.

Charlie starts to squawk. I am afraid he is going to make a scene. I say quietly, to myself, what kind of genius came up with this kiosk thing?

I text Channell where we are, what to say to the guard to let her up, what to say to the desk in case we are in an exam room when she arrives.

Charlie’s neurosurgeon walks by in scrubs, but he doesn’t see us. A wave of anxiety washes over me. Again.

PTSD.

We are called back for vitals.

Ten minutes later, Channell arrives. I catch myself sending a split-second prayer of gratitude out to the universe for giving me the good fortune of finding a behavioral support person, and friend, like Channell. She is radiant as always, looking like a cross between Mary J Blige and Michelle Obama, her skin glowing like an airbrushed magazine cover, her clothes comfortable, trendy, stylish, and confident. Without saying a word, she pulls out her phone, loads up Rocket Speller, and hands it to the screaming Charlie. He is angry that the guest Wi-Fi at the hospital is slow, and he can’t get the show he wants on his Kindle. Channell and I know this without being told, because Charlie doesn’t remember how to tell us… He greedily grabs the phone and stops screaming.

I look up, and three little girls are sitting in the kid chairs in front of the TV, taking a break from chatting to stare at Charlie with prissy, sour expressions on their faces and cold eyes. The stares come so frequently I rarely even notice them anymore, and don’t care. I wonder what’s wrong with them, or if they are here with a sibling. Is this a follow-up for a one-time-only febrile seizure?  Is mom concerned about “staring spells?”

People wonder how I can be so comfortable sharing my life in my speeches, blog and social media. Every day, I am forced to share my most intimate, private, and often humiliating moments in front of the whole world. I submit my tax returns to case workers when I apply for medical assistance, I let a steady stream of Charlie’s therapists, case managers, home health aides and nurse supervisors into my messy home each week. My genetic testing results are blasted all over the world for research studies. I am usually covered in one or more of Charlie’s body fluids, managing a sudden deluge of urine or nosebleed with a good-natured smile. I have lost all sense of privacy. When you have a child with profound and obvious special needs, there is no grieving in private. Everyone can see exactly what you are grieving about, and how you are handling it, everywhere you go. Like being followed by the paparazzi of personal tragedy.

Another little girl, about two years old and impeccably dressed, sits down at the tiny and colorfully painted table and chairs. I look up to her mother and can see that this child is her pride and joy. Rightfully so. The girl’s eyes squint and she is a little unsteady on her feet. She has the unmistakable signs of a child whose morning meds just kicked in. I know that look all too well.

I realize that I’m staring at her, and I wonder if her mother is still at that phase where the stares bother her.  I am making it worse.  Channell and I both comment on how much we love the little girl’s sparkly shoes. I project all the kindness, softness, and humanity I possibly can to her mother through my smile and gaze.

“You missed vital signs,” I say to Channell, widening my eyes, trying to force levity in my voice, but I am stretching it, and she knows it.

“Oh boy, how did that go?”

“He ripped the head circumference tape measure in half, wouldn’t do height, and waved bye-bye to the blood pressure cuff. But she did get his weight. Not bad.”

She goes along with my decision to pretend I have accepted this as my life, that I am impossibly strong, that I am “giving it to God,” or some other optimistic philosophy that I really want to believe but we both know is complete bullshit on days like today. She smiles wearily and looks down at Charlie, the love all over her face. “Oh Charles, my Charles.”

We look around absentmindedly, grateful for a break in caregiving, however brief.

A father is walking his son “around the block” of the waiting room. If I had to guess I’d say the son is about nine. His gait is off, he seems frail and he has that thing, that aura that’s always so obvious but difficult to put my finger on…he seems to have some sort of cognitive impairment.

I am no better than the other nosy spectators.

They decide to take a break and sit down by his mother. He has a blue Convaid transport chair just like Charlie’s, only newer. I want to commiserate, to ask his mom if she had to go through the rigmarole with the Seating Clinic trying to get that thing approved. The Seating Clinic pretends to be about customized equipment and individualized service, but everybody gets one of the same three chairs, no baskets or other frills unless you need to carry something like oxygen, because insurance won’t pay unless you can prove there’s a medical reason to need a basket. But we are all grateful to tears when we finally receive it. Or maybe just relieved that the tedious process of procuring it is over.

I wonder if the boy, like Charlie, was always this way, or if something catastrophic happened to him as a normally-developing child. I wonder if he has epilepsy like Charlie or something else, like a neuromuscular disease. I wonder if it is degenerative, and if it is, if his parents are also getting the, “You never know, don’t lose hope, one step at a time, we just don’t know, he’s looking really great” line from the doctors.

His parents are also looking around at the other parents, at me and at each other. It’s obvious to me that we are all wondering how we got here. We have a vague look of shock, like we just stepped out of the rubble of a building bombed in a terrorist attack. One minute we were normal moms, shopping at King of Prussia mall and doing Zumba in the church basement. The next…we were in a Facebook group typing words like ‘prognosis’ and ‘epileptologist’ to other parents whose kids have the same catastrophic illness.

The stress of that morning, that year, that decade is written across our weary faces. This morning alone: packing the diaper bag, the feeding supplies, the special cups, the emergency meds, the insurance cards, pre-registering, loading equipment, rehearsing  our questions, communicating our schedule with the home health staff, taking off of work, getting them in and out of the car…

My eyes settle on a  teenage girl in a wheelchair, talking to her mother, but not in complete sentences. I feel a pang of jealously that they can communicate at all, then realize how wrong it is to compare when clearly our lives, at least today, suck equally.

For some reason, my mind drifts to the time a few years ago that I worked at this very hospital. I was behind the scenes in the offices in the back, and there were doctors and nurses there who didn’t know my personal connection to this world. It was clinic day, and the clinicians were discussing the patients that they were about to see.

“…he was here through the ER six months ago, had an MRI, some inflammation but not enough to cause—“

–“Yup, yup. All negative, but he is very fair-skinned, fair eyes, fair hair and he is a FLK, so he has something”

“What’s a FLK?” I ask, innocently.

“Funny looking kid.”

I would be forced to quit working there because I didn’t have enough vacation days saved up to cover Charlie’s second brain surgery, which took place at that hospital. The irony. Probably just as well.

I watch the doctors and nurses walk by, trying not to make eye contact, glancing at us on occasion, then quickly back down at their clipboards and phones.

I wonder if Charlie is an FLK.

I absorb the energy of sleepless nights and unspeakable choices, broken marriages and ruined careers, a laser beam of doom pointed directly at our lives. A piano over our heads.

The nurse calls us back. I recognize her from when she took care of Charlie in the hospital. I am awash in gratitude and memories.

After the appointment, I check my phone. Jim is in parking level A1. He has both my breast pump and the baby. Redundant, I am thinking.

He has talk radio playing in the car.

They are talking about Trumpcare.

Closing my eyes in church

“May I bring the Eucharist back here to your seat?”

Church Lady was crisp and tan, summery and sweet, in her black and white gingham dress and full skirt.  She had a perfect, tasteful pedicure and low-heeled sandals.  Perfectly appropriate and approachable in every way. She was pretty like those self-deprecating moms in the viral videos who make fun of their “real mom bodies” and talk about their parenting failures but in reality are gorgeous and perfect and fashionable by any standard.  She was a walking Talbots commercial.  I was a sweaty mess from pushing that wheelchair in the scorching heat, disheveled and exhausted from Charlie’s 3 AM wake up call, jolted awake wondering if he was having a seizure or just had his days and nights mixed up again.

She caught me in such an emotional moment.  I burst out crying right in her face.

“It’s really no bother.”

I could sense her getting emotional for me, when she realized I was crying.

I politely sent her away.

“Are your allergies bothering you again, Mom?” said my eight-year-old daughter, who, thankfully, did not make the transition between me patiently telling her to sit up straight and not say, “Yo!” as her greeting during the sign of peace to my overwhelming grief in that hot chapel in late July.

“Yes, sweetie.  You know I have bad allergies.”

I have taken Ryan and Charlie to church twice now since moving to our new town.  Both times, the people in my life wonder aloud, “Why would you do that to yourself and everyone at church?  Why don’t you just leave him at home?”

I go to church to seek support and find a sense of community.  There is no way that the community can support me without meeting Charlie and seeing my daily life.  There is just no way.  Saying, “my son at home had two brain surgeries, has profound cognitive impairment, and autism” doesn’t do justice to the constant care he requires during all of his waking moments.  It simply needs to be experienced.

He is my child, and he has every right to be there, just like the “neurotypical” babies who squawk in the pews but, eventually, grow out of it.  Charlie is my big boy, sitting in the aisle in his wheelchair, sometimes half-singing the Wonder Pets song at the top of his lungs, sometimes dumping the contents of my purse all over the aisle, laughing as my makeup, coins, credit cards, and keys  scatter everywhere.  Sometimes he claps and cheers for no apparent reason.  He is no different from any toddler, only my stories of how he misbehaved at church will never be past tense.

The first day, I was so self-conscious.  Charlie was making a lot of nonsensical noise, singing and screeching, taking his shoes and socks off and throwing them.  Of course people are going to turn around.  I would, too, because that’s what you do when you hear a strange noise.  You turn around.

I wanted to crawl under a rock and die.

I was so self-conscious by all the people turning around, but I was determined to stay.  So I closed my eyes and tried to find peace, listening to the priest and finding comfort in the prayers I have been saying since I was old enough to speak.  I smiled gracefully and, sometimes, winced, when he was particularly disruptive.  I could feel their eyes burning a hole in me.

That first time, we chickened out and left about ten minutes early after Charlie urinated all over himself and the aisle.

There is something that happens when hundreds of people experience your suffering all at the same time.  You see your life through their eyes.  All the little things you have gotten “used to” suddenly brought to the surface.  It is sad and painful and overwhelming and devastating but also beautiful and liberating and cathartic.

I want to be a part of life.  I want to take my kids places like everyone else.  I want to live my life without thinking about who is going to be capable of watching him, if his noises are going to upset everyone.  I just want to be a regular mom and take my kids to church.  I want my daughter to have these ordinary experiences.  And I want others to bear witness not just to my suffering, but to my joys.

In those 60 minutes of Mass, I see through their eyes the horror of the level of Charlie’s impairment, how much work his care requires, how exhausting it is to be his caregiver.  But I see something else through their eyes:  a devoted mother of both children who is determined to listen to the homily, teach her daughter morals and discipline, and not let Charlie’s condition make her compromise the type of upbringing that she wants her daughter to have and that her daughter deserves.  My kids are far too important to slip through the cracks because I am not brave enough to meet their gaze.

I am starting to feel their respect as much as their pity.

I will keep bringing him, and each week I will greet my fellow parishioners, who so far have all been so compassionate with their words, deeds, and kind glances. When I become overwhelmed by the energy coming my way, yes, I will simply close my eyes.

 

 

How to research your kid’s medical condition like a pro

Tips from a mom who happens to be a professional researcher.

I am often asked if having a background in medical research helped me in navigating my son’s complex, mysterious, and rare medical condition.

The answer is:  yes and no.

Before I became a full-time epilepsy activist/blogger/goddess/mom/public speaker/all-around glamorous diva extraordinaire, I worked in clinical research.  For nine years, I was a research data analyst and database manager for adult pulmonary research at Johns Hopkins.  I did statistics for presentations, conference posters, and peer-reviewed manuscripts, and helped to plan and implement large-scale clinical research studies on subjects like pulmonary hypertension, asthma, and cystic fibrosis.  Before that, I worked for several years in women’s health.  What that means is, when my son was diagnosed with infantile spasms, I knew absolutely nothing about pediatric neurology.

In many ways, I was a total beginner just like many of you.

On the other hand, my degrees in political science and public health combined with my experience in the health care field taught me a whole lot about where to find the good information about my son’s condition.   I also know a lot about research “systems,”  how papers get published, how research is funded, and how to read a paper.

I would like to share with you my “essentials,” or the sites that I check first when I am looking up research or general information about my son’s condition, or helping another family look for information.

Using a few of my tricks, you can be good at this, too.

FINDING AND OBTAINING ARTICLES

UpToDate is hands-down my favorite resource for finding the latest, evidence-based information about any condition, written by doctors who really know their stuff.  These articles summarize the state of the research on a particular topic, synthesizing all of the latest studies, in an easy-to-read format.  The patient articles are free, but you can fairly inexpensively subscribe to the whole site with short-term access.  The articles that you get with the subscription tend to be much more detailed and are at a higher reading level than the articles written for a patient or caregiver audience.  Best of all, the articles provide lots of references to journal articles if you want to read about anything that was summarized in greater detail.  Oh, how I love UpToDate.

How can you find these journal articles?  Start with PubMed.   Click on the link and put my name (Boyce Danielle) into the box at the top.  It will send you to a list of a bunch of articles I co-authored.  Once you stop yawning, you can try searching for something that actually interests you.  Try putting in the name of a top researcher that you may have heard of, your child’s condition, or a combination of search terms like “epilepsy” “brain surgery” (although you might want to get more specific on those search terms, as it will give you way too many results to be helpful).  PubMed is where I start when someone asks me, “Hey, Danielle, I read a news article that came out yesterday that says they found a genetic mutation that causes cortical dysplasia.  Do you know what that is?”  I will play around with those words and between Google and PubMed (Googling [study epilepsy “cortical dysplasia” genetic] might lead to the authors’ names, which is then entered into PubMed), I will get enough information to answer the question.  There are a lot of different tools in PubMed that can help you search like a pro.  Just poke around that site for a while to get the help that you need.  Once you have your list of results, click on the article title to get the abstract, or a quick overview of the paper.  Many of the abstracts link to free full-text articles. Sometimes you have to dig around a bit to find the free links.  If the article you want is not free, sometimes your doctor or social worker will print out a copy using their institution’s access privileges– just don’t ask too often, because this takes up a bit of their time.  The organization called Partners in Information Access for the Public Health Workforce has published an essential list of other strategies for accessing medical literature.  It never hurts to have a good relationship with your local librarian.  Librarians love to help with research projects, and often have contacts at local medical libraries.

Side note: It also never hurts to try the Institute of Medicine (IOM).  The IOM convenes expert panels and sometimes publishes really great documents jam-packed with good information and references.   This includes recommendations for changes that should be made to improve care.   I mention the recommendations because I often cite the recent IOM report on epilepsy in my advocacy efforts (“but, the IOM thinks we should do this, too!”)

INTERPRETING THE ARTICLES

Now that you have your articles, you may be thinking, “Holy cow, I don’t understand a word of this!  What does this all mean for my child?”  Have no fear!  I can help you.  The BMJ’s “How to read a paper” series will help to demystify what you are reading.  Note:  it is very important to choose papers based on well-designed research studies, because the interpretation of results is much more straighforward and relevant if you do.  Reputable sources mentioned above and your physician’s recommendation are the best place to start.

That’s it!  That’s all there is to it.  Once you have mastered these basics, read on for some special topics.

SYSTEMATIC REVIEWS

Cochrane Reviews take all of the published evidence on a topic and synthesize it using a fancy and totally legitimate methodology called a systematic review, and then draw conclusions for level of evidence for a particular intervention.  Clear as mud, right?  OK, let’s try an example.  I am interested in learning about the evidence based on the published literature on brain surgery for epilepsy.  I put “epilepsy brain surgery” into the search and obtained these results.  The review explains how many studies were selected, how the analysis was performed, the limitations of the analysis, and the authors’ conclusions.  If you link out to the Cochrane Library, you can find a lot more details, including author information.  Pretty awesome, huh?  I guarantee that if you mention a relevant Cochrane Review to your child’s doctor, she or he will be very impressed and will also possibly fall off her or his chair.  The only limitation for some of these reviews is the fact that rare conditions or interventions (like brain surgery for children with infantile spasms) occur too infrequently to be studied on a large scale, so there might not be many studies, and therefore there might not be enough evidence to give them a thorough summary.

Online courses

Now that you have a taste for this, how about taking some FREE online courses to expand your knowledge base a little?  You know, in your spare time! 🙂

While this CDC course focuses on population-level (public health) studies, I think it is a great way to get you thinking analytically.

Khan Academy is one of my favorite sites ever.  You can learn almost anything for free.  I can get lost on this site for hours the way I imagine other women get lost in the lip gloss aisle of Sephora.  Conclusion:  I may need to get out more.  I just can’t help myself.  This is a great site for getting caught up on basic science and biology, like organs and how they work.  Sign up for free and then start with the Health and Science section of the site.  For parents of kids with neurological issues, check out Biological Basis of Behavior:  Early Methods of Studying the Brain.

MIT Opencourseware is one of those projects that restores my faith in humanity.  Hundreds of courses on almost every subject imaginable available to anyone to review, FREE!  Like Khan Academy, this site is more for big picture topics related to the human body rather than individual diseases.  If you search for broad terms like, “brain” you will be blown away.

These are just a few of the millions of resources online waiting to be discovered.  There’s nothing stopping you from being the most educated person in the room about your child’s condition.  After all, you are already the expert, and you always were.  Now you have the research to prove it.

I am so happy to be able to share this information with you, my most fabulous readers.  Please comment if this post helps you or if you have any questions!

 

Love letter to my boy and his eternal childhood

Yesterday, Charlie ran into my room for the tenth time of the morning, causing mayhem by knocking my jewelry off of the dresser and playing with the buttons on the window air conditioner.  As I pulled him (all 60+ lbs of him) up onto the bed, I tried to distract him with the television.  I entered “12” into the remote.  “12” is my go-to-channel for every TV-related emergency: it is public television.  Curious George was on.  And while it did capture Charlie’s attention only for a minute, I found myself smiling at the animation and silly plot.

You see, I missed all of the simple pleasures of childhood when my daughter was little.  I was always working, cleaning (“multitasking”) or caring for Charlie, who had hundreds of seizures daily through Ryan’s second, third, and fourth years of life.  TV was a tool, and yes, I admit, a babysitter.  I never just sat down and watched an episode with my kids.

Until now.

When you have a child like Charlie, whose personality is frozen at age two, you have a lot more opportunities to take it all in.   You are forced to go slower, to stop comparing, to take each day as it comes.

This life is not sad.  His existence is not sad.  HE is not sad.  Quite the contrary.  I feel sorry for people who do not get to experience the life-transforming joy that comes with having a child like Charlie.

This is more than a good thing. This is a miracle.

Infantile spasms robbed me of all joy as I knew it for many, many years.  But what was sent in its place is a joy the depths of which only a mother of a child like Charlie can possibly understand.  This is my reward.

This is my evidence of God.

He is my joy, my redemption, the source of a million chances to do something right with my life.

This is the joy I feel every morning at 4 AM when I change his soaking wet diaper, pajamas, and sheets, and he whines until I give him a toy.  I find myself smiling and love-talking to him while I do this.  I suffer this gladly, no matter how late I was up the night before or how many meetings I have the day ahead.

This is the joy I feel while staying up all night with him in the uncomfortable hospital bed, then entertaining him all day in that small room as he runs around, tethered to the wall, watching for seizures on the video EEG.

This is the joy I feel when I switch gears, reintegrate into a business meeting or school function for my daughter, perform exceptionally well, and mention none of the special challenges that I had that day, or that I face later that night.

This is the joy I feel when I am contacted by a parent of a child newly diagnosed with this horrendous condition, and somehow I know just what to say to them to make them feel like they can handle it, at least for one more day.

Joy has become my superpower.

This joy is walking me toward a profound peace.  I’m not quite there yet, but I am close.

This is the peace I feel when I bring him to the children’s hospital and hear that there is little more to be done on their end to raise his level of function.

Please note the joy on my face before expressing your condolences to me, either in words or facial expressions, when you see me caring for Charlie out in the community.  You will notice, I may seem tired, and perhaps a bit stressed, but never, ever unhappy.  It is impossible to  know Charlie and be unhappy.  I am becoming the woman, and mother, I always wanted to be before I had Charlie. I am doing GREAT in every area that matters.

I am Charlie’s mother.  I am SO lucky.

A beginner’s guide to the special education process

Are you new to the world of special education?  When it became apparent that Charlie would need special education, I went to the online support groups.  I remember feeling so overwhelmed and intimidated by the other moms who seemed to know so much more than I ever could.   I worried that I would never get up to speed.
If you feel like that, too, I want you to know that you are not alone.
This post is a roundup of everything I wish I had known at the beginning.
Get up to speed quickly by reading  10 Basic Steps in Special Education. The  Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation.  Wrightslaw is one of my favorite resources for special education law.
Did you know that there is an  Office of Special Education and Rehabilitative Services?  I didn’t, either, but knowing about it should come in handy someday!
I love these free  printables and other resources for children with special communication needs. Charlie uses a PECS book to communicate at his Easter Seals school and I am always amazed at how using the PECS system has improved his verbal speech!
Charlie LOVES his iPad. I picked up a few of these  22 Best Mobile Apps for kids with special needs. Charlie is also obsessed with  Rocket SpellerParker PenguinSuper Why! app and  Toca Doctor.  When you hear about kids using speech apps on the iPad, they are often referring to Proloquo2Go.  We are hoping that Charlie will start using this software soon.
Finally, oh how I wish I had known about A Day in Our Shoes a few years ago when the tumultuous IEP process began.  This site, and the corresponding Facebook support group, will rock your world with great resources!
I hope you feel a little better about setting out on your adventure in special education.  Please comment below to share your own favorite resources or ask questions!

Paying for it

When Charlie was first diagnosed with infantile spasms, I had private insurance through my employer but it was not nearly enough to cover copays for medications and therapies plus all of the other expenses such as wheelchairs and special beds that private insurance denied. I am above the income cutoff for Medicaid. What’s a working family with a really sick kid to do?
As it turns out, there is special waiver program, administered on a state-by-state basis, that can help! If you really want to drop some knowledge, ask your local Medicaid office about the Katie Beckett or Tax Equity and Fiscal Responsibility Act (TEFRA) provision. You can learn all about it here! For those of us who don’t have time to read a huge report, I love this web site for comprehensive information on  Medicaid waivers nationwide!
Sometimes, the medications that our children need are super expensive even after our private and public insurance options are exhausted. That’s where patient assistance programs come in. Find out if there is a patient assistance program for your child’s medication  here.

My apartment, the nudist colony

I said it before and I will say it again.  Potty training is no fun.  This issue is compounded by the fact that many of our older kids can also undress themselves, take off their diapers, and wreak havoc in our homes. This week, I have not been able to keep my Charlie’s clothes on…especially his PANTS! And when there’s a dirty diaper involved? Let’s just say I had to buy a case of disinfectant wipes this week!

 

I turned to other parents in various Facebook groups for advice and support, lamenting the fact that Charlie is turning our living room into his own personal clothing-optional resort.  As usual, I received tons of great advice.

 

From the category, “Why didn’t I think of that?” These  pajamas zip down the back to prevent unwanted removal. But, alas, buying special clothing is not in this single working mom’s budget.  I went OLD SCHOOL.  Something I did which worked like a charm is to cut the feet off of footed pajamas and put them on backwards.  Now I am on a constant quest for footie jammies and other one-piece outfits, which I can never find when I am looking for them!  Pretty soon the only readily available, affordable one-piece outfits will be discount Halloween costumes.  If anyone can pull off a Chewbacca costume in June, it’s Charlie.

 

I tried the overalls-on-backwards trick recommended by one of his behavioral specialists and learned two things:   1) Charlie looks ridiculously adorable in overalls.  2) He figured out how to unsnap them within the first 20 seconds.  Thanks a lot, team of expert occupational therapists, for teaching him this useful skill.

 

Do you have creative adaptive clothing ideas? Send in your pictures!

I am in potty training Hell

Potty training is no fun, but it’s even less fun to have an older child who is not ready for potty training, or requires the use of special techniques to learn.

Of course, many children with special needs will always be incontinent, through no fault of their own or their parents. Charlie might be one of them.  Over the years, I have spoken to many parents of adult children with special needs who feel that their child could have developed the skills, but for whatever reason, never did.  If I’ve learned one thing about potty training from these parents,  it is this:

They wish they had tried.

If they did try,

they wish they had pushed harder to get help.

It would have improved quality of life for everyone times a million.

We are working on it every day.  I tried all of the usual techniques that worked for my older daughter, but, without modifications, these approaches often do not work on a child with special needs. To see how some of these techniques are adapted for a kid like Charlie, this article on potty training advice from the UNC TEACCH Autism Program is a great read.  Charlie receives behavioral therapy and has the autism diagnosis. Our behavioral people have a lot of great ideas which include using “reinforcers” such as the iPad or foods, and all of these strategies will require consistency and persistence.

Indeed, the standard approaches are just too pedestrian for a complicated man like Charlie.  As you can see from the photo above, a potty chair makes a great office chair to sit on fully clothed and bark orders to his imaginary secretary with his imaginary phone.

I will admit, I am pretty discouraged.

Charlie doesn’t really communicate his needs in a functional way unless he is whipping his cup at me and saying, “DWINK?” so it’s really difficult to teach him to tell me when he needs to go, and I have to rely on his “tells.”   So, for example, he will be at the windowsill where he likes to play with his toys, and will start doing what I like to call the slow motion James Brown move, crossing his legs and crouching.  This is the point that I am told by behavioral experts that I am to implement an approximately 400-step plan (or at least it seems that way) that involves verbal cues, reinforcement, praise, shadow puppets, and interpretive dance.  This process usually results in him sitting on the toilet with a goofy grin doing nothing, with me and at least one therapist kneeling on the tile floor, sweating and saying/singing ridiculous things to him to encourage him to go, finally deciding that we must have been mistaken and he DOESN’T have to go after all, pulling his pants up, and him throwing his “reinforcer” toy in the toilet…

…then pooping his pants in the living room five minutes later.

Alas, I’ll never know unless I try.

Meanwhile, back in the real world, Charlie needs diapers.  Lots of them, and big ones, because he is six years old and big for his age.  What kind of diapers should I buy now that Charlie has outgrown the biggest size of Pull-ups but the smaller adult size is too big and bulky for his (adorable and) ambulatory self? Will my insurance help me to pay for these diapers? Here is a great  article on diapers for big kids.

As for obtaining and financing Charlie’s diapers, this has been a seemingly never-ending nightmare of red tape and trial and error for the last three years.  I am lucky to live in PA and have Medical Assistance, a wonderful, magical secondary insurance that picks up a ton of what my private, employer-based insurance doesn’t cover, such as therapies and diapers.  However, until recently, I was unlucky that I had to jump through crazy hoops every month just to use the insurance to get Charlie’s diapers.  I would have to call and sort something out, send in a form, confirm a standing order, or otherwise keep the diaper supplier on my to do list for at least two weeks out of every month, and even then, the shipment was often delayed.

For all the trouble involved, I could have used that time to make handcrafted, artisanal diapers from recycled organic fibers and still would have had time leftover.  Don’t you hate it when “services” that are supposed to make your life easier actually become your part-time job?

Once again, I turned to my Facebook family for advice.   The other moms didn’t seem to be having so much trouble, and recommended that I switch diaper suppliers, so I did, last month.  I have to say, the prospect of changing suppliers was intimidating.  It was one of those “Devil you know” type of situations.  I am SO GLAD I SWITCHED!  After a few brief, initial consultations to get insurance sorted and assess our needs, they sent me two sample diapers to see what would work best, then they processed my order right away after I told them which diaper was best.  Best of all, they let me do many transactions online, something very important to me because it’s really difficult to discuss diaper absorbancy when Charlie has the same ten seconds of an episode of the Dora the Explorer on his iPad on repeat, full blast volume in the background.  I would like to give a shout out to J&B Medical Supply for making the process go smoothly! So, the moral of the story is, if the process seems to be too much of an ordeal, maybe it’s not you…it’s them…and switching suppliers can solve the problem!

Does your private insurance carrier cover diapers?  If not, be sure to check this site for a list of potential sources for coverage in your state.  What are some of your potty training tips?

Welcome to my world!

familyphoto
Welcome to my blog!  I am Danielle Boyce, the founder of Neurology Parent Professionals, a networking group of parent advocates.  I am a working mom of three, including a seven-year-old son, Charlie, who had a severe form epilepsy called infantile spasms , a condition that sometimes leads to Lennox-Gastaut Syndrome, and has the autism diagnosis.   He has had two brain surgeries to collectively remove much of the right side of his brain.  I also happen to have a Master’s in Public Health with a concentration in epidemiology and have worked as a Senior Research Data Analyst at Johns Hopkins, Division of Pulmonary and Critical Care Medicine, for more than ten years. I also wrote a children’s book called Charlie’s Teacher, which is written from the perspective of a sibling of a child with special needs.  I travel the country speaking to families and neurology professionals about the importance of including the caregiver perspective in absolutely every aspect of pediatric neurology.  My goal is to share high-quality resources and advice that I have collected from a variety of patient communities throughout my personal journey — all with a sense of humor.   Follow me on Linkedin and Twitter

 

Do you have a resource or event that you would like me to share? Perhaps a question or concern that you need help solving? Please contact danielle@neurologyparent.org and your submission may appear in a future post!