The Three-Second Hug

This morning as I was walking alone in my neighborhood, a young man was walking ahead of me, with his father, arm in arm. I sensed that the young man had some sort of developmental disability, because they looked like Charlie and Jim walking, if Charlie was a teenager.

They stopped to look at something and I started to pass them. The young man turned toward me. I could see that he had Down syndrome. We both smiled. He said hello and I said hello back. His father had an all-too-familiar look on his face, a combination of fear that the stranger would not be kind to his child as well as fear that his child would do something to make the stranger uncomfortable. Of course, I instantly wanted to put them at ease and tell him about Charlie but that’s never an easy topic to bring up with a complete stranger, and I didn’t want to make the son feel self-conscious. It’s always so much easier to have those encounters when I actually have Charlie with me. So we just exchanged pleasantries and I kept walking.

Then the young man says from behind me, “I like your purse.” I stopped, turned around, and said, “Thank you! It’s from India.” At this point, the dad looks increasingly uncomfortable at the son’s insistence to stay and engage me in conversation, shifting his weight from leg to leg, looking around for an exit. I know that feeling very well.

The son said, “I love Indians!” I smiled, charmed, and said, “So do I! And I love Indian food too!”

He said “Do you love huggable Indians?” At which point his dad is totally stressed out, barking, “OK, OK!” to his son.

Then the son says, “Can I have a hug?”

I said, “Sure!”

Before I could open my arms, the father jumps in, clearly dying inside (but probably also wondering why this lady is not acting the least bit uncomfortable right now), and the father exclaims, “Three second hug! Three second hug!” This is also familiar to me. Charlie has several “catch phrases” that Team Charlie uses to redirect negative behaviors. One of our big ones is “Wait, wait, wait!”

The young man and I shared a three-second hug. To the father’s visible surprise, I followed the Hug Protocol without missing a beat: we all counted out loud during the hug: “One, two, THREE!”

It was a really good hug, and completely innocent and appropriate. He just wanted a hug from the nice lady with the beautiful, Indian purse.

I turned to his father, mustering all of the kindness that I possibly could with my eyes, and said, almost whispering, “My son gets help with learning how to give three-second hugs from The Arc.”

I could see a look of relief wash over him as I smiled and said goodbye.

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. Shoot. 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. 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.

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 disabilities, 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 BS 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.

Parents Changing The World: Les Rogers and the 1915 K Plan Waiver

I am often complimented by people outside of the pediatric neurology world for what is perceived to be my “rare” dedication and commitment to advocacy, and my ability to combine the personal and professional for the greater good. My response is always, “If you think I’m cool, you should meet my friends!” I have met hundreds of brilliant activist-parents along the way, parents who blow my accomplishments out of the water, parents who inspire and educate me every day. I am fortunate to have many of these parents as part of my group, Neurology Parent Professionals. This section of the blog will be dedicated to featuring those parents’ favorite projects, in their own words.

I would like you to meet Les Rogers. Les is a man of many talents, including a professional educator, a public policy expert, and an exceptional father. I met Les in the infantile spasms parent support groups. Les is always able to provide terrific advice, especially when it comes to health care financing. He often mentions something called the “K Plan.” One day, I asked Les to tell me more. I was so impressed with his work in Oregon that I immediately knew that he needed to tell YOU more, too. A special thank you to Les for sharing with us!

Without further ado, I am honored to share his story and expertise with you, in his own words:

The 1915 K Plan Waiver in Oregon: The Best Thing to Happen to Disability Services in a Long Time

Truly Providing the Supports Families of Special Needs Children Require to Thrive

“The true measure of any society can be found in how it treats its most vulnerable members”-Ghandi

April 2017

By: Leslie Rogers

What are Medicaid Waivers and What is the 1915 K Waiver/K Plan in Oregon?

Medicaid waivers are programs that provide supports and services needed to people that would otherwise be in an institution, nursing home, or hospital to receive long-term care in the community (The History of Waivers). The 1915 K waiver is known as the Community First Choice Options, with the goal of keeping people in their community and not in an institutional setting. Serving people in the community is by far the least expensive option and why this program was created. Prior to 1991 the Federal Government only paid for services if a person was in an institution (MedicaidWaiver.org). The K Plan was born of the need to fulfill broken promises to the disability community over many years. In Oregon, Institutions were shut down without sufficient diversion of funds to Home and Community Based Services to meet the needs of individuals attempting to reintegrate into society (Erasing Fairviews Horrors). This led to a system that could only provide for families in crisis in Oregon, which was cruel and did not support families until nearly all hope was lost.

I will focus on how Oregon implemented the K Plan since that is my experience. The overall system of Medicaid waivers operates under rules from the Centers for Medicare and Medicaid Services (CMS). The system in Oregon is a Community based system with a significant preference for less expensive supported in home living and a collection of group homes, foster placements, and some emergency placement facility options. This system also serves all ages that experience a qualifying level of need. In fact far more adults are on the K plan in Oregon than children, which is often forgotten in much of the literature that focuses on children on the 1915 K waiver.

What Services Are Provided?

The K plan in Oregon is a unique approach to providing services to families with special needs loved ones (Oregon K Plan Brochure).

Key Features of the Oregon System:

The anecdotal evidence is that the Oregon system has been much more expansive with its definition of what constitutes an institutional level of care. This has led to nearly every family that needs services getting qualified for services as opposed to the prior system of only serving those families in abject crises.

Key Features:

NO WAITLISTS by LAW: if you qualify you receive services. The state does have 90 days to evaluate the application, and there are Medicaid appeal rights etc.
Up to $5,000 worth of funding to provide things private insurance and Medicaid decline. Such as environmental modifications including lifts, changes for wheelchair accessibility etc.
No parental means testing: understanding that often the parents of special needs children are driven to bankruptcy at a far higher rate
Presumptive Medical: presumptive medical provides Medicaid as a tertiary payee (last in line payee) for those families of children with significant medical need. Keeps families from going through the cyclical bankruptcy cycle, and ending up on Medicaid anyway.

Services Provided:

Personal Service Worker Hours: These are hours of caregiver support designed to help individuals be included in the community
24 Hour Respite days
Children’s In Home Intensive Services for children with significant medical and/or behavioral problems
Training for families and caregivers such as delegations of medical tasks etc.
Behavior Therapists, and Applied Behavioral Analysis
Service Coordination
Case Management
Family to Family Networks

What States Have the K Plan?

Federal Community First Choice K Plan

Five states have the K plan implemented in the United States:

California
Maryland
Montana
Oregon
Texas

These five states account for nearly a quarter of the United States population among them. Every state’s implementation of the K plan has been a little different. I hope that parents from some of the other states that have implemented the K plan will read this article and write about their own experiences, and how the K plan has worked in their state.

The Rogers Family’s Experience with the K Plan

Our family was driven to the edge of bankruptcy following my child’s diagnosis of West Syndrome and nearly half year stay in a children’s hospital. The medical bills were piled a mile high. Not the least of which was caused by a drug company raising the price of her seizure drug from $40 a vial to $33,500 a vial, but that is a story for another time (Mallinckrodt Fine FTC Article). We were exceeding 1,000 explanations of benefits a year from our two insurance companies. It was a tsunami of work coordinating benefits and getting bills paid on top of caring for our child that many people face. It is the double tragedy of significant medical illness in our society first the medical tragedy, then the inevitable fights with insurance, and ultimately the bankruptcy cycle for many families (Sharpe and Baker, 2007). Following our release from the hospital after we finally got seizure cessation from West syndrome, our child had regressed to a newborn. Gloria is tube fed, suction dependent 24/7, and requires intense one-on-one care all day every day. We filed for Disability Services in our state, which is operated through the K plan. A case manager came and did an evaluation, and a few months later we received the results (they have 90 days to respond). Gloria’s level of need was bordering on 24 hour nursing care. She missed the Children’s Intensive In Home Services (CIIS) level of care by just a few points, We were awarded around 300 hours of care, presumptive medical, and began working on the environmental modifications needed to make our house wheelchair accessible. The presumptive medical helped us avoid bankruptcy. The Personal Service Worker hours of care have helped us keep Gloria supported in our home, and allowed us to provide night nursing so that my wife and I can continue to work and provide for all of Gloria’s uncovered needs that exceed what the K plan provides for. In short we were able to keep our family whole, keep our marriage, reduce the stressors and pressures, and continue to work and contribute to society.

We were saved when we received the K Plan, and we were able to keep Gloria in our home around December 2015. We scoured our area for a nurse looking for a night shift while we were waiting for the state to make a decision about Gloria’s enrollment and number of hours, and thankfully we found one and had her fill out the enrollment information to become a Personal Service Worker through the K Plan (this process has taken some of our workers two months). Thankfully we were all set and ready when the K Plan began, and we had enough hours to provide nursing for Gloria at night. This allowed us to continue to work, and begin to pay off the mountain of medical debts we had, and I could work providing money to cover Gloria’s medical equipment that was not covered. We also thankfully qualified for presumptive medical (which makes Medicaid a last payer up to our max out of pocket), which basically keeps parents of severely disabled children from going bankrupt, and losing everything over and over again (which has been my experience being around the disabled community my whole life). The K Plan saved my family and saved the state hundreds of thousands of dollars by keeping Gloria with her family at home and out of Skilled Nursing Facilities. That is the purpose of the K Plan.

How Do I Get the K Plan in My State?

My dream is that all families are supported like those in Oregon. We have a golden opportunity to advocate at the state and national level for the expansion nationwide of the K plan as a basis for the standards of support for families facing the challenges of caring for children and adults with special needs. Growing up with two adopted special needs siblings, and now caring for my daughter with Cerebral Palsy I know at a visceral level what life before the K plan was like for many families, and how so many families floundered and imploded without the supports that are needed to keep a family whole. Many children ended up in foster systems that could not find a placement for them, and languished in Institutions like Fairview in Oregon. With the K plan in Oregon those with special needs are being given an opportunity like never seen before in the United States. There is a chance for true community inclusion. I have presented to organizations like Rare Disease Legislative Advocates about the K plan to help garner national awareness of the transformative nature of K plan services in Oregon (RDLA K Plan Presentation-please utilize this resource to help advocate for the K Plan in your state). With your advocacy support coupled with organizations like the National Organization of Rare Disorders, and Rare Disease Legislative advocates we can strive to improve the standard of support for those needing services to be able to live full lives in their communities.

Resources

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!

The Wishing Star

The other day, Ryan was sad because she thought I love Charlie more. I asked why she feels that way and she says because I don’t make him dress himself, brush his own teeth, use the bathroom, or do other things that I ask her to do for herself.

I explained that I wish he could do those things and it makes me very sad that he might never be able to. I said every mother wishes to have a healthy child who will grow up, go to school, get married, and have children. I said I wish for all of those things and I am sorry I don’t show that sometimes, but I am only trying to be strong for her.

Ryan left the room and came back with this: a Wishing Star.

“You can wish on this, Mommy.”

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
- If possible, use the National Library of Medicine, a source considered credible by elected officials and others who will read this. Otherwise, stick with peer-reviewed journal articles (learn all about this in my previous post about researching your child’s condition).

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. Needymeds.org is another great resource!

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 my resource page! You might also try the Foundation Center’s page for grantseeking for individuals.

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.

For education matters, check out Understood.

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!

What it is like to have Charlie for a brother

By Ryan Madeline Enderson, age 7
(Edited for spelling and some punctuation by Mom)

Here is a good thing about it: he is funny because he says, “ok …BUM!” And Momma and me think it is very funny. Here is something annoying: In the morning my brother always wakes us up in like 6:30 AM and squawks his head off. Not really. And sometimes when he has seizures he has to get brain surgery and he has a wheel chair with special needs. And rarely we go to church because my brother echos in it so we have to leave early. In church you are supposed to listen to the person who is talking like at school.

I love Charlie very much.

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.