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.

Growing up is hard to do: transitioning your child with special needs

I am the first to admit that the idea of transitioning Charlie to adulthood absolutely freaks me out.  I am FINALLY all settled with the doctors, therapists, schools, systems, insurance, and programs and I will have to do it all over again in what seems like a few short years?

I find that a lot of the resources out there for transitioning kids with chronic illnesses are aimed at kids who are capable of  becoming independent advocates for themselves.  My Charlie has a profound intellectual disability and will probably never be able to fully communicate his medical history, wants, and needs to a health care provider or live independently.  It is very possible that I will always have to be his voice and make decisions for him.  This adds a really challenging layer to my transition planning, so I need to start early.

Here are some of my questions/worries about transition:

  • Will he live with me or in a group home?
  • Where are the group homes?
  • What if the group homes are horrible like the institutions I saw on 60 Minutes? How can I find a nice one?
  • What happens at these places?  What will his life be like?
  • How will I pay for the group home?
  • If he stays with me, how will I take care of him alone?  He’s only six and it’s already difficult to bathe him alone. Can I get an aide to help me?
  • What are some things I will need to look out for at his IEP meetings as he gets older?
  • If Charlie is eventually able to work, are there rules about how much money is he allowed to make?
  • How will his Medical Assistance and other benefits change?
  • How do Social Security benefits fit in with all of this?
  • What forms will I need to fill out?  What are the associated timelines and deadlines?
  • Will I need to make myself his legal guardian?  How does that work?
  • Will his sister have to play a role in any of this?
  • Are my assets protected if Charlie needs expensive care?
  • Are my parents allowed to leave money to Charlie in their will?  If so, how much, and under what circumstances?
  • What is our children’s hospital’s policy on transition?
  • What doctor will Charlie see when he is transitioned to adulthood?
  • How will all of his medical records get transferred?

What will happen to Charlie if anything happens to me?

I am currently in the early stages of this process and will update these links and this narrative as time goes on.  However, although incomplete, I hope this helps you in your exploration of transition resources for your child.

The first thing I recommend is that you create a personalized advocacy toolkit so that you have your information totally organized and an entourage of helpers when this transition starts to happen.  Send to your team your own list of transition questions and you will get a wealth of information in return!

Don’t forget to e-mail your social workers and case managers at the hospital and school system and ask them to explain what to expect in the transition process.  If it happened today, to which medical center would they refer you? (you probably have some idea, but ask anyway).  Is there a program in place at the hospital to assist with transition?  Can they put you in touch with a family with similar circumstances to yours who has successfully transitioned?

Go to your local social media group (the one you identified or created as part of your personalized advocacy toolkit) and ask if anyone has gone through this transition process.  When you find someone, ask if they can post about their experiences and recommend helpers like social workers, financial planners, and lawyers who were particularly useful in this process.  Just asking the question is guaranteed to launch a lively discussion, and it will be great to hear the experiences of families who live in your area.

Next, go to the Child Neurology Foundation (CNF) page on transition.  Every time I go to their site I say, “WHOAH!  Where has this been all my life?”  I am so thankful that they put together this page. It’s really, really good, and not only for people with neurological conditions.

I want to highlight some of the other links that will be particularly useful to my readers:

Disability.gov has a page on transition that has some great resources.

Foster care:  For people with disabilities who went through the foster care system, this guide from the Florida Division of Vocational Rehabilitation is absolutely wonderful.

State resources:  Got Transition has a list of links to your State’s transition resources.  The American Bar Association’s Adult Guardianship Handbook by State is also terrific.

Financial planning:  this Special Needs Financial Planning blog post breaks it all down nicely.

Education and Employment:  The Center for Parent Information and Resources has a great overview on transition in the school setting that is helping me to get oriented to all that is involved.  You should already know about this group from when you created your personalized advocacy toolkit.

Social Security Compassionate Allowances List: In response to complaints about long waits for the Social Security Administration (SSA) to make determinations for Social Security disability benefits (SSDI) or Supplemental Security Income (SSI), SSA now offers a Compassionate Allowances program that expedites the application process for people who have certain conditions.  Find out if your child’s condition is on the list.

As you can see, I have a lot more questions than answers about Charlie’s transition to adulthood, but at least I am armed with all of the information that I need to make his transition go as smoothly as possible.

What are your experiences with transition?  Do you have any great advice or resources to share?  I would love to hear from you in the comments below!

 

How to make a personalized advocacy toolkit for your child

As a coach for parents of children with neurological conditions and developmental disabilities, I receive many questions about obtaining services through government agencies, financing medical care, and addressing disability rights violations.

It can be especially tricky to get the specific information that you need because of your child’s unique circumstances, differences in State laws, and the type of issue that you are having (insurance, housing, school).

No matter what the issue is, I almost always refer families to a set of tools that I like to think of as a personalized advocacy toolkit.  Any parent can make their own toolkit and use it to advocate for their child.

The goal is to be prepared to give organized information about your child’s condition to a network of familiar advocates who can be mobilized at a moment’s notice.

First and foremost, before starting this process, you must repeat this mantra:  I AM NOT A BOTHER.  I AM NOT A BOTHER.  The people in the list below get paid to help you, and even if they didn’t, they would be honored to help a deserving parent like you.

Let’s begin.

Make a one-page fact sheet about your child’s condition, and keep it on hand electronically and hard copy.   The fact sheet should include:

  • overview of the condition
  • how the condition affects your child
  • links to further reading

You can whip out this fact sheet whenever someone asks about your child’s condition — at an IEP meeting, with a new nurse or therapist, or when you are contacting an elected official.

Create a timeline of medical events in your child’s life.  This should be as brief as possible (easier said than done), and like the one-page fact sheet, it will make it easier to communicate to individuals who are trying to help you.

Create a care binder to organize all of your child’s medical information including your fact sheet and timeline.  Seattle Children’s The Center for Children with Special Needs offers this downloadable kit.

Make a list of all of the advocacy and research organizations for your child’s condition and get to know the staff.  I am so fortunate that the epilepsy world has many wonderful nonprofits who have Charlie’s back, such as the Child Neurology Foundation, the Tuberous Sclerosis Alliance, The Infantile Spasms Project,  and the Lennox-Gastaut Syndrome Foundation, just to name a few.  Once you make your own list, find out if these groups have State and regional contacts in your area and reach out to them.  Often, these groups have employees or volunteers that are dedicated to helping parents solve problems related to access to care.  Sign up for their newsletters and find them on social media.

Know your State resources. Every State has at least one Parent Training and Information Center (PTI) to assist families of children with disabilities.  Use this interactive map to find your PTI!  This post tells you all about how to find State Medicaid waiver resources.

Get to know your pharmaceutical companies. If your child takes medication, find out if the manufacturer has advocacy programs, such as patient assistance to cover co-pays and other grant programs.  Some have other great resources such as regional meetups and caregiver blogs.  RxAssist is a good way to locate patient assistance programs.

Know NORD.  The National Organization for Rare Disorders has many patient assistance programs and other resources to help families with a variety of situations.

Maintain a list of grant programs.  Check out the Foundation Center’s page for grantseeking for individuals.  This blog post from Joyful Journey Mom is so comprehensive.  I am amazed every time I look at it!

Put your hospital social worker on speed dial.  Social workers are incredible, magical people who are here to support you and your child.  My son’s social worker just got him approved for home health aide hours after I tried and failed.  When in doubt, tell the social worker.

Meet your elected officials:  find your elected officials here and send them a note.  Better yet, if possible, visit them in person, even before you need their help.  When you are in a jam, especially involving State or Federal benefits, housing, or other areas that touch on public policy, send them a letter requesting their intervention.   The American Library Association has a sample letter that you can customize for your circumstances.

Find (or create) a social media group for the community of families at your local hospital.   The beauty of this group is that it allows you to meet other parents of children with a variety of conditions, but who share the same providers.  If you only stick with groups for your child’s condition, you will miss a wealth of knowledge (and new friends).  My local Facebook group is quite active and is terrific for troubleshooting issues ranging from parking at the hospital to recommending providers.

Find a lawyer or know how to find one.  I love Wrightslaw’s Yellow Pages for Kids.  Identify your local pro bono health law group, often run in affiliation with law schools.  Mine is the Pennsylvania Health Law Project and they are so helpful, especially when there is a problem with Charlie’s Medical Assistance.

Now that you have your toolkit, you are prepared for almost anything that comes your way! Don’t forget to update it every six months or so, and touch base with your favorite organizations frequently in case of staff turnover so that you know exactly who to call when you need help!

I would love for you to share your favorite resources with me in the comments!

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.

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!