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.

 

 

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!

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!