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Archive for December 2016

Dyslexia X2

Tuesday, December 20, 2016


Last school year, only a few weeks after Oliver was diagnosed with dyslexia, Bennett's kindergarten teacher sat down with me.

She wanted to tell me she was suspicious that Bennett might have dyslexia and had no idea, at the time, that his brother had just been diagnosed.  She knew only that Bennett was very smart and wasn't performing in reading and spelling as she believed he should.  She encouraged me to have him evaluated.

This is a sample of Bennett's school work that was concerning to Bennett's kindergarten teacher, prompting her to suggest he be tested for dyslexia.

So this September, now with Bennett in 1st grade, six months after I took Oliver to UNT-Denton to get tested, I took Bennett for his own psycho-educational assessment.  A few weeks later, he was given the official diagnosis of dyslexia, a neurological condition that involves difficulty in learning to read or interpret words, letters and other symbols but that does affect general intelligence.

It's a real bummer that Bennett has two things that make life challenging: a disease that will eventually make it hard for him to breathe and a condition that makes reading a challenge.  But in both situations, we are grateful there are resources to help. (By the way, CF and dyslexia, although both inheritable conditions are not believed to be causally connected.)

In the same way I have become an advocate in the area of CF, I have spent many many hours to become to advocate for my boys in the area of dyslexia.  I have scoured the internet.  I have ordered books about dyslexia on Amazon.  I have found friends going through the same journey.  I have joined dyslexia Facebook groups.  For months, I sucked down every piece of knowledge I could gain about the topic of neurodiversity and dyslexia, all so I could begin to articulate what my boys were dealing with and to decide how to help them.

Almost as soon as one gets the dyslexia diagnosis, one learns about the best practice of receiving Orton-Gillingham based one-on-one 2X per week dyslexia tutoring.  Thankfully, by the time we received a diagnosis for Bennett, Oliver was already working with a dyslexia tutor.  So, it was easy to just plug him in.

But, over time, I began to realize the cost and commitment of having two boys in twice weekly tutoring for years to come - and I began to recognize that maybe it would be easier if I became a dyslexia tutor myself.  Thankfully, since I have a Master in Education, doing so wasn't too difficult.  I found a highly-recommended reasonably priced curriculum that I could use without significant training.


The dyslexia curriculum I use is called "Barton Reading and Spelling Systems."  The program helps break down/isolate the phoneme sounds and provides spelling strategies and spelling rules to help people with dyslexia master areas that are often challenging.  In addition, it offers significant opportunities to practice these strategies which is imperative for those with dyslexia.

I have been in constant conversation with the boys' school about the best ways to support them.  The administration/teachers at the school have been gracious enough and flexible enough to allow me to pull the boys out of class 1 hour every morning to tutor them on a rotating schedule.  This allows me to work with each of them one-on-one to help them gain the reading and spelling skills that dyslexia makes challenging to master without intervention. (I am really enjoying my time with the boys.  I consider it a great gift to be able to work with them.)

Reading and spelling issues with dyslexia can be directly addressed through tutoring but dyslexia affects other aspects of school learning, including memorizing and processing.  It is complicated enough in the classroom to deal with cystic fibrosis, but it's even more complicated when a learning disability is involved as well.

But dyslexia, just like CF, teaches me to be patient, to see the child beyond the diagnosis and to embrace a different experience than we first expected to have.

In preparation for a recent conversation with Bennett's principal and teachers, Brian and I spent a long time talking through our expectations of Bennett in school.  We realized that it's so easy for Brian and me to get caught up in the expectations placed on us and on those around us:

If he doesn't do this well, then he may not do this other thing well.  And if he doesn't do this other thing well, then he won't do that thing well.  And if he can't do that thing well, then...

One of the biggest reminders CF provides our family is that we're not in control...and that even, if we do everything "right", it still might not turn out like we want.

So we've learned that it's better to live in the present, not stressing about the other things, but embracing these things.

Bennett missed a lot of school last year and continues to miss school due to his CF.  Even if we can get Bennett better where he needs to be educationally, there is a very good chance Bennett will land in the hospital at some point and likely he'll fall behind again.  Then what?  Our family just can't play that game.

Throughout much conversation, Brian and I spent time recently reminding ourselves what is true about Bennett and our role as his parents: Bennett is a very intelligent, tender-hearted and eager little boy who will thrive in whatever situation he is put in.  We realized that what we, as his parents, need to do for him - more than anything else - is to just stop the noise around him - to prevent pressures that might make him feel like he's missing out in life and to help him to fully engage in whatever life has given him in the moment.

Brian's and my hopes for Bennett are no less high as they were before we got the CF diagnosis...and the dyslexia diagnosis.  They are just different.  And there is something beautiful about our hopes being different - because it is at that point that they've stop being our hopes for Bennett and, instead, have become Bennett's hopes for himself.

Having a child with CF and two children with dyslexia continues to humble me as a mother.  I am regularly faced with the reality of our situation juxtaposed with the way I wish it could be.  It is here, though, that I am able to recognize their are always blessings embedded in loss.  For example,

Progressive diseases don't give the gift of time.  But they do give the gift of the present.

Learning disabilities don't make things easy.  But they remind us our value doesn't come from others.

Bennett's challenges bring up compassion within me.  I want nothing more than for life to be easier for him.  But it is in light of these challenges that Bennett most demonstrates the depth of his strength and resilience.  And I am incredibly fortunate, as his mother, to get a chance to experience this part of him first hand.

I'm proud of you, Bennett.

Training the Future Child Mental Health Care Workforce

Monday, December 5, 2016

Last week, I was given the opportunity to participate in the "Forum on Promoting Children’s Cognitive, Affective, and Behavioral Health" with The National Academies of Sciences, Engineering, and Medicine.

Although much of my patient advocacy work is with CF on behalf of Bennett, this particular forum was focused on mental health and, so my work focused more on Oliver's part of our CF journey.

Along with several other parents who shared their children's stories of mental health, I helped open the symposium by sharing with a room full 50+ various pediatric mental health experts Oliver's young struggles with anxiety as a sibling of a person with cystic fibrosis.  The goal of our two-day work was to develop action items and recommendations for improving the training of the future workforce in child mental health care.

I found the conference to be really fascinating and couldn't help but think of many other families like mine would have loved to have been there listening to the current state of the pediatric mental health care system and ways currently being suggested to improve the system for all children.

My goal in sharing both boys' story, but especially Oliver's, in this forum was to bring a human element to a room of brilliant minds (pediatricians, psychologists, researchers, innovators, policy-makers, etc.) working on behalf of kids.

I shared Oliver's story, much of which I have shared on the blog, by sharing Bennett's journey:  Oliver was two years old when his world was turned upside down.  His baby brother had almost died in the womb and at only a week old had been given a progressive and life-shortening diagnosis.  As a young toddler, Oliver was left to watch him mother and father grieve and his brother be hooked up to machines.

Oliver, age 2
Oliver's anxiety would eventually become so disruptive to the family that his mother would reach out to a play therapist for help.  Improvement would come as Oliver's little brother's health improved and as his parent adjusted to a new normal.  But school would become a place of frustration and hopeless until Oliver was provided pharmacological support for anxiety and diagnosed with both learning disability (dyslexia) and giftedness.

After I shared Oliver's story, I implored the group that sat before me to remember "the Olivers"...all of the siblings of children in the system.  I implored the group to recognize that anxiety and depression is high in chronic disease communities, like CF, for those with chronic disease, but rates are even higher for siblings...and even higher still for caregivers.  And I implored the group to remember that "one more thing" for a family is never just "one more thing." One more referral or medication refill or follow-up appointment or treatment...is one more system to be created, one more barrier to overcome.  I asked the experts before me to be thoughtful, that when improving the system, to not to continue to overburden the families at the center of needing mental health care.

The meeting was very stimulating as one expert after another came up to the podium to share for about 5-6 minutes about what they are doing in the mental health space that is working successfully and offer recommendations of what needs to be done to improve the pediatric mental health care system.

It's hard to fully capture and share in a meaningful way all of the good insights provided (although I will link to the online recording of the meeting once it's online). So, I thought it might be best for me to just share some of my favorite favorite quotes or one-line insights from the conference:
  • Mental health: get a "check up from your neck up."
  • Mental health disorders typically develop in childhood. 1 in 5 children develop a mental health disorder.
  • Mental health care is the greatest example of how fragmented our health care system is. (Dr. Benjamin F. Miller, Farley Health Policy Center at the University of Colorado)
  • 35% of kids who received outpatient mental health care saw only their primary care provider. (Dr. Benjamin F. Miller, Farley Health Policy Center at the University of Colorado)
  • [In mental health], we need to create a culture of whole health. (Dr. Benjamin F. Miller, Farley Health Policy Center at the University of Colorado)
  • Schools are becoming the defacto mental health system. (Elizabeth Connors, University of Maryland School of Medicine)
  • What if we had an IEP for behavior and mental disorders? What if children had a right to appropriate mental health resources? (Christoper Bellonci @ Tufts Medical Center)
    • my personal translation: Why do we, as a society, value all children getting access to education but we don't value all children having access to mental health care? Why are families often left to fiend for themselves in this area?
  • We need to better support our "front line providers" who are working with children with mental and behavioral disorders
  • Regarding the need to provide better mental health care for our children: "Moral outrage my be our greatest leverage if we chose to use it." (Christopher Bellonci, Tufts Medical Center)
    • my personal translation: We cannot sit back and ignore that the children in our country deserve better."
  • We need a culture of "shared vision" - where children are considered "everybody's child."
  • The last thing we need is another program. We need system transformation. (Dr. Benjamin Miller, The Farley Center in Colorado)
  • [We must] Change the question from 'What is good enough?' to "How good can we get?' 
    • my personal translation: we must refuse to be complacent in what we do in mental health care
  • "Whoever has the data...has the influence."
    • my personal translation: it is critical to demonstrate through data the effectiveness of whatever you do in health care
At the end of the meeting, along with another two parents who represented the patient/family voice, I was asked to briefly share a last few words.  I sat there, as the conference was winding down, right before I was to hold the microphone, wondering what else I could say to this group that hadn't already been said.  So many amazing people had already shared so many wonderful and sobering thoughts.  What could I add??

Then, I thought about Oliver. What would Oliver say?  What would I want tell Oliver, if he could understand, about what I just did and about the discussions that had just been had?

In that moment, I remembered what the child psychologist told me at Oliver's psycho-educational assessment this past February.  Eight year-old Oliver was still in the midst of having significant anxiety issues.  The psychologist had asked him to draw a picture of his immediate family and each of our roles in the family.

I shared with the room what the psychologist revealed to me, what Oliver had drawn in his family portrait.  Oliver had drawn a space ship with most of us family members inside.  But, most interestingly to the psychologist, he had drawn himself outside of the space ship, sitting on top as the look out - ever vigilant (anxiety) of the danger that lurked around him.

I shared this with the room.  Then looked directly into the eyes of the men and women who sat in front of me and said, "What will I tell Oliver about this conference?  I will tell Oliver that he does not sit alone on top of that space ship.  He has all of you guys there up with him, looking out and working to protect him from the dangers that lurked."

That's exactly what I am going home feeling - grateful to know some of the work that is already being done in the pediatric mental health space to give better care to families who need it and grateful to be more aware of the work that is still yet to be done.

I'd love to jump 20 years ahead and see where the mental health care culture will be in the future. Here is what I hope to see:

parents will have more resources at their fingertips...

parents will be more welcomed as a part of their care team...

experts from different disciplines (education, pediatricians, psychologists, etc) will be more holistically trained, better aligned and working more fluidly together...

mental health care will be less patient-focused and more family-focused, less patient-centered and more family-driven...

and, most of all, mental health will no longer be something people are ashamed to talk about but something that is embraced as part of whole health wellness.

That change is happening already.

People from NACFC (and a few other nuggets worth mentioning)

Thursday, December 1, 2016

I genuinely have not meant to stop blog posting as of recent.  I just can't seem to catch up.  Kids, holiday traveling and work projects have all had me preoccupied.  But there are so many good things to share!!

In my last blog post, I shared as much as I could about what I learned at NACFC in October.  But there are other things worth noting so I'm posting those thoughts/pictures here. 

First, let me share about the people at NACFC.  I certainly could not capture all of the people I love getting to see and meet at NACFC but here are just a few of those who I captured.  Above left is one of my best CF Mom friends, Erin.  Above right is my friend Chris, an adult with CF who, along with his wife, recently adopted one of the the cutest little babies I've ever seen.


Above left is Lou, a CF mom from Ireland, who I am still thrilled I ran in to on the streets of Orlando as we were both walking different ways to restaurants for dinner.  We were able to stop for 2 seconds and capture a picture.  We joke that we are related because both of our kids have the exact same CF mutations. :) Above right is Jerry Cahill, a CF adult hero in his own right.  He's one of the nicest guys and I was over the moon to meet him in person.  Bottom left is Sioban, a CF mom, who is an amazing mother and CF advocate.  I very much admire her and cherished the time we had to visit together at NACFC.  Bottom right is the C3N team from Cincinnati Children's Hospital that I work alongside with our work in the Learning Health Network. (Notice Michael, the goofball in black! ;))


This picture is from our "Parents Connect" Dinner at Opa Restaurant in Orlando sponsored by Allergan.  It was the first of it's kind and will hopefully be an annual event.  I met lots of great CF moms (and a few dads) who I either already had a connection to via social media or do now.


Above top is Peter and Ginger.  Peter is a CF dad with an English accent and powerhouse fundraiser for the CF Foundation.  He is a risk taker and is always doing something wild and crazy to raise money for CF.  Ginger is a passionate CF mom from Tennessee who is 100% southern.  Ginger will be the 2016 CFF's Volunteer Leadership Conference Chair in Dallas this Spring. Above bottom is Laurie, a CF mom from Vermont who I work with closely on the CF Foundation patient-driven initiative, Insight CF.

The picture above is the grassroots parent lunch at NACFC that came from a bunch of CF Moms who were already connected on Facebook but who wanted to meet in person.  This is our second year to get together but it was just as valuable as last year.  It's nice to be able to share what we are learning, what sessions we are exciting about attending and what tips we've learned that we are taking back home.

I must say these pictures, while fun to see, also makes me sad...because of those who cannot be in these photos.  One of the most tragic things about the North American Cystic Fibrosis Conference is that people with CF are not allowed to attend NACFC.  I understand the CF Foundation's infection control guidelines, that people with CF are a risk to other people with CF which is why they are not allowed to attend.  (I also know some people with CF come anyway.)  I greatly appreciate the way the CF Foundation is working each year to bring more and more of the conference online so everyone can participate, if at least virtually.  But there is no true substitute for in person connecting.  It makes me super sad, as a mother of a child with CF, that this conference cannot be something that the very people we are there for can experience.  It's so sad that CF even takes away the opportunity to be at a conference about one's life-saving treatments.  To think that, unless something changes, Bennett will not be able to attend this conference with me when he is an adult is very disappointing.  All the more reason we need a cure.

I was really excited this year to be a part of a team that had a poster accepted at NACFC.  For the last year or so, I've been working alongside some amazing people from the FDA and several pharmaceutical companies as a part of the Clinical Trials Transformation Initiative of the Duke Clinical Research Institute at Duke University.  The abstract that was accepted is called "Pediatric Trials in Antibacterial Drug Development: Findings from the Clinical Trials." I'm proud to be a parent sharing research at NACFC. Unfortunately, in order to share research at NACFC, you have to have a research organization, something most non-clinicians like parents/patients don't have. With continued support from patient-driven research sponsored by the CF Foundation through the Insight CF Registry Research Project, I am hopeful that, over time, there will be more opportunities and platforms for patients and families to share their knowledge and research with the CF research community. People with CF and their families are increasingly being acknowledged as experts in the field. But, as of now, there are few opportunities to demonstrate that research at medical conferences such as NACFC. I'm hoping that change is coming.



Kate's Farms was a huge buzz at NACFC and while it may be coming to a CF Clinic near you, the reality is patients/families have been demanding "real food" enteral nutrition for a while now.  There is a very big push in the CF community (and, in the general g-tube community) for better enteral nutrition options.  Kate's Farms was the only "dairy-free, gluten-free, soy-free, non-GMO" food enteral vendor that I knew of at NACFC and received very good interest from those who visited.  The other companies I know that offers something similar is Liquid Hope and Real Food Blends.  Although they weren't there, I know the CF community has been asking for more holistic nourishment support for their children who are being supplemented at night and during the day.  The desire is to see that children who are fed through a g-tube are getting similar types of wholesome foods as those who are not.  Personally, I think Kate's Farms signals the change in preference for a more balanced diet from the CF community.  I'm happy to say more and more docs are getting on board.

Another buzz at NACFC this year (that I actually saw last year but didn't post online as not to jeopardize the FDA approval process) was Relizorb, a new enzyme just approved for enteral feedings.  The way that it works is you place one end of the cartridge into the tubing and put the enzyme into the tube extension so that the formula goes through the enzymes as it goes in to the belly.  This product rocks my world!  Not only is it supposed to be more effective than other enzymes for tube feeds (we're still determining if that's true for Bennett), it is SO easy to use and negates having to crush enzymes or wake Bennett up to take enzymes by mouth.  Bennett has been trialing Relizorb for the last few weeks and Brian and I love it.  We are still trying to figure out what is the best formula to put with it since fiber in a formula can clog the cartridge, but other than that, we're huge fans of this new enzyme method.  Improving the treatment burden is huge and I can say Relizorb does that!

This is me and Lisa.  She's a CF doc.  I'm a CF mom.  We met on Twitter.  Throughout NACFC, we were both tweeting our respective experiences at the conference.  But, as Twitter often does when you're passionately tweeting about a topic, it connected us together.  I was delighted to see such an active CF doc on Twitter sharing good information.  She was delighted to see an equally active mom in the Twittersphere.  So, we decided to do a "Tweet-up" and met up with each other in real life!  Lisa and I both believe Twitter is such a great resource for the sharing of good ideas and information, particularly for the larger CF community since so many of us are dispersed around the nation and can't get together.  We hope to work together on this topic in the future: improving CF care through the connection and collaboration of social media.