Month: June 2016

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

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!

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

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

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

The answer is:  yes and no.

Before I became a full-time rare disease researcher/activist/blogger/goddess/mom/public speaker/all-around glamorous diva extraordinaire, I worked in clinical research.  For 14 years, I have been a senior research data analyst and database manager for adult pulmonary and nursing research at Johns Hopkins.  I do the statistics for presentations, conference posters, and peer-reviewed manuscripts, and help to plan and implement large-scale clinical research studies on subjects like pulmonary hypertension, asthma, COPD, and cystic fibrosis.  Before that, I worked for several years in women’s health.  What that means is, when my son was diagnosed with infantile spasms, I knew absolutely nothing about pediatric neurology.

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

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

I am now pursuing my doctorate in public administration, focusing on emerging qualitative research techniques that capture “real world data” on the patient and caregiver experience.

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

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

FINDING AND OBTAINING ARTICLES

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

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

Side note: It also never hurts to try the National Academies of Medicine.  This group convenes expert panels and sometimes publishes really great documents jam-packed with evidence-based information and references.   This includes recommendations for changes that should be made to improve care.

INTERPRETING THE ARTICLES

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

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

SYSTEMATIC REVIEWS

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

Online courses

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

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

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

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

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

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

What it is like to have Charlie for a brother

siblingBy 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.