Are any of you old enough to remember David Bowie’s song Changes? It was the theme of one high school homecoming dance…I won’t say which year!

There are lots of changes going on. It’s getting towards the end of the school year, but it’s not just the end of any school year. Ben is graduating from 5th grade and heading to the Middle School next year, and Lucy is off to the High School in the fall. I’m glad to say that life is pretty much status quo for Charlotte.

5th graders helping out with food pantry collection, May 2012

5th graders helping out with food pantry collection, May 2012

Sprague 5th graders have moved from being regular students to being top dogs of the school. They’ve participated in many empowerment- and leadership-building activities over the past year. This week the 5th graders spearheaded the food drive to ensure that the Wellesley Food Pantry would be well-stocked throughout the summer. At the end of the month they will participate in three, Outward Bound-like days at Hale Reservation, learning how to rock climb, do a ropes course, and learn about ecology–and thanks to great efforts by Sprague teachers and therapists, Ben will participate in all activities.

Ben during 5th grade vs. faculty basketball game, Feb 2012

Ben during 5th grade vs. faculty basketball game, Feb 2012

Earlier in the year, the annual 5th grade vs. the Faculty basketball game took place, with the 5th graders ever so narrowly beating the faculty by one point. What was so amazing, awesome and inspiring about this event was not the close win by the 5th graders, but how so many incredible parents and students came together to ensure that this was a truly inclusive event. Over three Wednesday afternoons, these parent coaches taught ball-handling skills to the students, and worked out certain plays that Ben and his classmates would run during the game. When it came time for the real game, Ben’s classmates– terrific basketball players who could’ve stolen the limelight–willingly passed the ball to Ben, Ben “ran” (wheeled) the ball down the court, and then passed it to another teammate to shoot the basket.

It was a sight to be seen. I missed most of it through my tears. Luckily, it was captured on shaky-cam video.

5th graders (and parent) at game night, March 2012

5th graders at game night, March 2012

What a change from Kindergarten, where during recess Ben was instructed by his teachers to take a ball and go find a friend to play with–only for Ben to return to say that he asked someone but they said no (and the teachers would say, “go try again”), to 5th grade, where Ben is a typical, regular, normal presence and is appreciated and respected by his pals.

I didn’t see these changes coming, but so many other people within our community did, and they made all of this happen. I now have only positive thoughts about upcoming changes during the transition to Middle School, but I pray that some changes never happen, such as losing touch with these great friends as everyone grows up.

Oh, look out you rock ‘n rollers
Pretty soon you’re gonna get a little older

*photos courtesy of Karen Haberly and Jessica Rosenbloom

The ABLE Act

Tonight I was witness to the most interesting of sibling disputes. How do you define “volume” and “mass” and how are they different? [Don’t ask me!] Lucy and Ben got into a heated debate about this, and Ben ended up turning to his iPad for the answer. Both claim they are right. I had to settle this argument by diversion–I sent Lucy upstairs to clean the cage of Leona the Large (guinea pig).

What is the volume of a London Eye pod? February 2012

What is the volume of a London Eye pod? February 2012

But secretly–as the parent of a child with special health care needs–I was thrilled with this fight. When Ben was in daycare and preschool, I wasn’t sure he’d make it past Kindergarten due to all his health issues (see the Education page for more details on this). Thankfully, after the trach, when he could *breathe*, he then began to grow, thrive, and learn. When he was 5 years old we realized he is terrific at mental math. Since then he’s become a compulsive reader. Those 529 college savings plans that our family’s Chief Financial Officer (aka Sherin) set up for each kid and our vision of Ben attending college independently no longer seems like such a far fetched idea.

Yet, even if Ben is at college somewhere, what amount of resources will it take for him to live independently? I’ve been following the progress of the Achieving A Better Life Experience (ABLE) Act of 2011, which is designed “to encourage and assist individuals and families in saving private funds for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life”. The ABLE Act, known as H.R. 3423 and S. 1872, is meant to supplement rather than to replace benefits provided by other sources (including Medicaid and private insurance). The ABLE Act authorizes “ABLE Accounts,” which are similar in many respects to existing 529 college savings plans. Provided certain rules are met, disability savings accounts will be exempt from federal taxation, and any amount under $100,000 can be saved without losing federal and state benefits.

What a great way for families like ours to responsibly plan for their child’s transition to adulthood. Autism Speaks and the National Association for Down Syndrome are two organizations with national presence who are advocating for the ABLE Act in Congress. Currently, the bill is in a House committee and it is projected to have a 1% chance of being enacted (apparently only 4% of all House bills are enacted). Somehow, the 140+ co-sponsors in the House and the 16 co-sponsors in the Senate know how difficult it is to save money for a child’s future when that child is receiving federal benefits. Because Ben is a Medicaid recipient–he is eligible based on a lifetime disability, not because of income–he can *never* save any real money. How is he supposed to support himself in the future?

Ben is probably one of the lucky ones, in that our CFO Sherin set up a special needs trust which, upon both parents’ death, a significant portion of our savings will be put in this trust and will then be dispensed to Ben by a designated person on a planned basis to meet his living expenses and needs. Until that time, all of the money set aside for Ben’s living expenses will really be ours, but we won’t benefit from 529-like tax exempt status on these considerable funds.

MA Senator Brown and Reps Tsongas and Frank are all co-sponsors–we now need to get the attention of Sen. Kerry on this issue! Our dream is of Ben going to college, earning a degree, finding employment, living independently, debating with his sisters—we don’t want that to fizzle. But there needs to be legislation in place that will allow him to keep the money he earns, allow family to contribute financially to his needs, and keep his state-supported health care at the same time.

Eighteen Years…and Counting

On August 16, 1991, I returned to London after a two-week trip to visit my dad and my grandparents in Kolkata, India. My grandfather had recently had a stroke, and I needed to get to Kolkata fast. The cheapest way? Fly Aeroflot–via Moscow, Sharjah and New Delhi, eventually landing in Kolkata. I’ll never do it again. Passengers with duty-free microwave ovens in the aisle; toilets being shut down in mid-air because there was no longer any water; smoking anywhere; only the hardest pieces of bread for food; and my favorite–no assigned seats, so you better fight for one!

Lucy and Ben, Giza 2007

Lucy and Ben, Giza 2007

Despite feeling quite poorly after my return, I mustered enough energy to make one last visit to our usual Gilbert and Sullivan pub in Covent Garden, as a farewell to my summer roommate Mimi who was soon returning to graduate school. I absolutely did not want to go out, but Mimi insisted. That very night, I was introduced to Sherin through our mutual friend Garry. This is how our love blossomed during our first conversation: Sherin: “Where did you go to school?” Me: “Michigan. Where did you go?”. Sherin: “Michigan State”. Me: “Oh”. [Turn away, go find Mimi.]

Such was the promising beginning to our courtship. When Sherin later that evening suggested that the group go out for an Indian meal after the pub, as is the English tradition, I screamed “NOOOOO!” (we went out for Chinese instead). When Sherin told me he loved Woody Allen (yes you did!), our future was solidified. We got married on April 23, 1994, eighteen years ago today.

One thing that I’ve always loved about Sherin is that he is a true mixture of race and ethnicity, as I am. He was born in Cairo to an Egyptian father and German mother–and grew up in Nigeria before coming to the U.S. to attend Michigan State. So when Ben was thought to have a genetic disorder, you can imagine how bizarre this was–how can two people, with such diverse backgrounds, whose children had 4 grandparents from 4 different continents, have anything genetic in common?

In May 2003, after meeting Dr. Hal Dietz at Johns Hopkins and finding out that Ben had Schwartz-Jampel syndrome–the culmination of almost 21 months of searching for this genetic answer–Sherin and I learned that we most likely share a mutation on the perlecan gene on chromosome 1, the result of which is SJS. Since SJS is autosomal recessive, every child we bore would have a 25% chance of having this condition. Lucy and Charlotte are in the 75%; Ben, obviously, is not.

Scientists are just beginning to understand how our genes can predict how we respond to adversity–had this part of Sherin’s genes been examined during genetic counseling, we could have received “good news” along with the bad. Sherin has always been extremely clear about his love for and dedication to Ben. There hasn’t been an activity that Sherin hasn’t made work for Ben–laser tag, swimming, soccer, gymnastics, trampoline jumping, ghosting. If Ben wants to do it, Sherin will find a way. When 5-year-old Ben’s love of planes and flying was comparable only to his love of geography, Sherin took Ben (and Lucy), by himself, with suitcases full of medical supplies and equipment, to Egypt to visit his parents (not by Aeroflot). When Ben is invited to sleepovers, Sherin goes along to make it happen. When I worry that Ben might injure himself, it is Sherin who reminds me that Ben needs to be a boy–and when Ben does his wheelies in his walker, or does spin outs over ice in his wheelchair, it is Sherin who has taught me to either close my eyes or keep my mouth shut and let Ben have his fun.

Thank you Sherin for being my rock, my best friend, my chicken curry maker, the person who can rise to meet any obstacle when I cannot, and the greatest dad our kids could have asked for. When Ben tells you “Daddy, you’re the best!”, we ALL know this is right.

Ben Elwy, Medical Educator

The afternoon began with a plank-holding contest, followed by a heated game of chess. Then there was a bit of Minnesota trivia, a demonstration of Sprague band’s latest repertoire involving the snare drum and bells, and finally, Ben performed (death-defying, in his mother’s opinion) spins in his walker, using only his arms for support, in our kitchen. It was just another day of medical education from Ben’s perspective.

Ben demonstrating side plank in his basement therapy room

Ben demonstrating side plank in his basement therapy room

Our family hosts two, 3rd-year BU medical students for one afternoon during their pediatric rotation every semester. Operation House Call is a joint venture between The ARC of Massachusetts and BU School of Medicine and is designed to teach these future physicians how best to interact with patients with developmental disorders, and their families. The program has been operating since 1991, and by all accounts, is a huge success.

Although Ben does not have an intellectual disability, Schwartz-Jampel syndrome is considered a developmental disorder because of Ben’s physical limitations and the progressive nature of his condition. I wanted to become part of this program because of my professional interest in improving doctor-patient communication around disability and chronic health problems–what better place to start than with medical students? But I also think that Ben is the best teacher of all. He has shown his own doctors how effective he is at communicating his needs, his wants, and how he copes so well with his condition. It was time that he started doing this for future doctors as well.

The program is also family-centered. The students get to meet Lucy and Charlotte and ask them questions, they can see how all of us interact with Ben, and for an afternoon, they are our guests. I let Ben set the agenda–which is why the plank-holding and chess game became realities (Ben won both). We later realized that one of the students was from Minnesota, which was Ben’s assigned state to research in 4th grade. A Minnesota trivia game developed (the student won). The students do manage to ask some important questions. When Ben was asked what the most important thing was for a doctor to do, Ben said “Don’t be late!”. My advice–find something that you can connect with your patient about that does not involve his or her health. Ben’s favorite doctors have always inquired about his latest skiing, horseback riding, windsurfing escapade, or the more mundane, such as what book is Ben reading now, and how he did on his latest math test. I was really happy to see that these students did ask Ben some of these questions without my prompting. They also asked Ben how his friends at school treat him because of his challenges, and they asked me what kinds of advice I would have for parents looking for resources to modify their home.

While we were talking, a funny event happened. I was explaining a bit more about SJS, and Ben said, “you mean it’s not Shorts? I’ve been saying Shorts-Jampel my whole life!”. After lots of laughter, Ben started incorporating this theme into jokes, such as “get off my schwartz” (he was wearing shorts). This quick wit was not lost on these students.

After three hours, we said goodbye, which is strangely hard because we didn’t know these people before. But we’ve shared a lot and we can only hope that an afternoon with Ben and us sticks in their mind when they encounter a family with a child with a disability in a family medicine or ER situation, which is where these students hope to be one year from now. We’ll never know the impact of their time with Ben. Before we know it, we’ll be hosting another two Operation House Call students, and the cycle of Ben educating others about Shorts-Jampel will continue….

Caregiving, a TEDMED challenge

If any of you teach, then you know how an inspiring teacher can be mesmerizing to an otherwise tired, overloaded group of students. I’m not often that rousing teacher, but this year, I became a fan of TED Talks to help create that bolt of motivation when it was lacking. A TED Talk by physician and author Abraham Verghese, on the importance of a doctor’s touch, was a class favorite. If you have a few minutes to spare, click on the link and you will see why.

Ben's parent caregivers on his 8th birthday, 2009

Ben's parent caregivers on his 8th birthday, 2009

A relative of TED–Technology, Entertainment, Design–is TEDMED, an annual conference which brings together 1,200 people (more than half of them from outside the field of medicine), in one place over 3 1/2 days to share innovative ideas of how to address the most pressing health care challenges. It’s not a place for stuffy academics (although the most cool ones are often there). It’s a place for people to share ideas from outside of medicine to reshape how our country provides health care. I SO wish I was in DC right now, where the conference is taking place April 10-13.

Although only the bigshots are there, you and I can participate in TEDMED by voting on what we consider the biggest challenges in health care right now. I think our country’s caregiving crisis is one of those challenges–and so does Suzanne Geffen Mintz, founder of the National Family Caregivers Association, and caregiver to a husband with multiple sclerosis. I’ve been reading the NFCA e-newsletter for years, and I’ve followed their legislative progress as they lobby Congress to pass bills that provide more support to the 44 million Americans who provide free caregiving to aging parents, Veterans who return from combat disabled, and medically complicated children. It’s an industry worth $350 billion dollars, if it were actually paid for, but right now, 80% of informal, long-term caregiving is provided at home, at a financial loss to the family.

But it’s a problem of a national scale. 60% of caregivers are women (40% are therefore men), and many of these people are unemployed or underemployed, not earning Social Security or contributing to their pension plans. And, not surprisingly, many caregivers report worse health, including mental health, than people who are not caregivers. We all know my health struggles as a caregiver–and we know there are millions of others out there like me. It’s obvious, but I’ll state it–caregivers with depression are not so good about taking care of the health needs of those for whom they are caring.

Please show TEDMED that you agree that the caregiver crisis is indeed one of America’s greatest health challenges and which requires the efforts of innovators and entrepeneurs around the world to start solving. Vote for #34 at this link!. Your votes will help set the next agenda for TEDMED.

I wonder if any of the leaders and innovators at TEDMED are considering less technologically-advanced innovations to address the the mental health crisis for caregivers–a more “back to basics” approach of a doctor’s touch, a listening ear, a shoulder to lean on. I think Abraham Verghese would agree with me, as would many of Ben’s physicians who have provided just that to us over the last 10 years.

Outing Depression

After Ben was diagnosed with Schwartz-Jampel syndrome, my world began falling apart. I don’t think it was just because of the diagnosis, I think part of it was the uncertainty of what he and all of us would be facing. Up until May 2003, I had become as expert as possible on Marfan, Ehlers-Danlos, and Stickler syndromes, the three major diagnoses doctors had considered for Ben. SJS came out of the blue–and what was worse, very little was known about it. How was I going to become an expert?

In July 2003, as I was spiralling downward, I self-administered the Beck Depression Inventory, and was shocked that I scored in the severe range. I’ll never be able to fully describe the cloud, the fog, the fear, the anger, the despair that comprises depression. But I thought, “I have a PhD in psychology, I know what to do”. Of course I didn’t. I went to my primary care provider, who prescribed Lexapro–which had recently come on the market–but she knew of NO psychologists or clinical social workers to refer me to. My countless calls to unknown therapists resulted in zilch. I finally found a psychoanalyst through a friend, but after 6 months of seeing her, I realized I didn’t have 5 years to figure out a solution to my problem. The psychoanalyst had sent me to a psychiatrist to get my medication right, and it was this doctor, being one of the few psychiatrists who actually engage in cognitive-behavioral therapy ,who finally helped me reach recovery. And he helped wean me off Lexapro, which had stopped my rage, despair and anger, but had left me in a near-zombie like state.

I always felt the need to go public with my depression experiences–it was my own anti-stigma campaign. I chronicled some of my experiences in a commentary in the journal Pediatrics, I was a featured speaker at a Family Voices conference in South Carolina on this topic, and I’ve been a guest speaker in a BUSPH class on maternal and child health to talk about this as well.

But it was wonderful to experience someone else going public with their mental illness story last night. Sherin and I saw the play “Sick”, performed at BU by the Seattle-based monologuist, Elizabeth Kenny. Elizabeth, after developing depressive-like symptoms as a result of hormone medication for ovarian cysts, was sent to a psychiatrist, who first put her on Paxil, then Celexa, and finally Lexapro, while other physicians added Klonopin and then Zyprexia to the mix. The narrative is about her developing psychotic symptoms while she was taking both SSRIs and anti-psychotics, and how these meds ended up making her toxic and taking away 2 1/2 years of her life. The story is powerful, and will be very familiar to those who have tried to fix one health problem, yet the “fix” only creates other health problems. Elizabeth’s case was extreme, but as one physician from the crowd pointed out, she was never referred to an endocrinologist, which was what should have happened in the beginning.

I was once asked by a friend and colleague what it feels like to tell my story about depression. It’s definitely uncomfortable, but if I won’t do it, who will? Elizabeth Kenny will–kudos to Elizabeth for her commanding performance about the problems with U.S. mental health care. She began her public journey by speaking to psychiatrists at Cambridge Hospital about her experiences, and now she’s traveling across the country in her one-woman show. I won’t be joining her on stage, but I commend her spirit.

Passion, for Ben

Lucy had a far-off soccer game, and Charlotte has a hacking cough, so it was just Ben and me this morning at St. John’s, to celebrate Palm Sunday and re-live the Passion. Ben didn’t complain that his sisters weren’t going with us. Ben’s only complaint–ever–is about practicing piano.

Ben with Easter treats, April 2011

Ben with Easter treats, April 2011

Being at church with Ben is such a curious situation. I experience feelings of support, sympathy, pity, optimism and blessedness, all at once. If I’m at church without Ben, I’m barely noticed. With Ben, all eyes are on us. We are greeted, always so warmly, by Sister, who is genuinely delighted to see Ben, and doesn’t pat his head. She bends down to talk to him face-to-face and always asks him a meaningful question. Similarly, the priests smile, greet Ben, shake his hand or give him a high five. Today, the priest, recalling a conversation from at least 3 months ago, said, “I see you brought your most well-behaved child with you today!”. Shocked he remembered our talk from January, I had to agree–and had to marvel, once again– at how lucky we are to have Ben.

A couple months ago, when Charlotte, Lucy, Ben and I were all at church together, I had my hands full. My kids are old enough to act decently, but Charlotte was clingy, and every time I helped Ben with something, she tried to interfere. Being at church has a very calming effect on me, so instead of doing what I’d do at home (scream, shout, add expletive here), I hugged her with one arm, Ben with the other, and even managed to give Lucy reaffirming squeezes to her hand every so often, as if to say, “I know you’re older and don’t need me to hug you, but I still love you”.

Two really interesting things happened. One was that a woman sitting next to us told me what a joy it was to watch us in church. The other is that a woman sitting behind us gave me her card and said that if I ever needed any help with Ben, like meeting him at his busstop or helping him get to school, that I could call her and she would help me. Normally I would be quite skeptical about such an offer, but she confided that she had a son in his late twenties who uses a wheelchair, so she understood more than what I first gave her credit for.

It would be easy for me to mistake these gestures and offers as being overly sympathetic or being done out of pity, but that would be wrong. Yet it’s what I would have done a few years ago. I can tell that I’m growing up, because now I bask in the compliment that I’m a competent mother, and I feel good that apparently I’m approachable enough for someone to offer help. It’s been a lot of big steps to get to this place. I know that people who compliment me and offer us help see that I feel passion for Ben. And what an appropriate day to share this than on the Lord’s Passion.

Unaffordable Health Care

Here is a little quiz: How much money did the Elwy family pay in out-of-pocket health care costs in 2011? a) $5,000; b) $21,000 or c) nothing.

I’m not telling….yet!

The media is viral with coverage of the many case filings at the Supreme Court of the United States regarding the Affordable Care Act (ACA). As the mother of a medically complicated son, and a professor of health policy and management, I just can’t stay out of this conversation.

Ben recovering from double knee surgery, November 2011

Ben recovering from double knee surgery, November 2011

According to Dr. Sherry Glied, Assistant Secretary of Planning and Evaluation at DHHS, and the person who is in charge of implementing this two-year-old law, the ACA has five major reform areas: 1) reform of insurer practices; 2) improvements in insurance coverage; 3) expansion of coverage; 4) prevention and public health fund and 5) delivery system reform. I cover this last part in my PM755, The Shape of Health Care Delivery class at BU School of Public Health–so if you want to know more about accountable care organizations, bundled payments and the Centers for Medicare and Medicaid Innovation Center–you can email me offline. But it’s the other aspects of the law that are so important here.

While much of the ACA won’t go into effect until 2014 (such as the end to discrimination based on pre-existing conditions), many parts of ACA are already law. In reforming insurer practices, the U.S. government has already repealed lifetime limits on health insurance coverage for 105 million Americans. For a child like Ben–whose procedures, surgeries and therapy visits take us to the catastrophic limit of our health insurance coverage every year–repeal of lifetime limits in insurance coverage is the difference between life or death. In improving insurance coverage, the ACA now provides 54 million more Americans with full access to preventive services recommended by the U.S. Preventive Services Task Force without a copay, including 5.5 million receiving Medicare. Young adults–2.5 million of them–now receive health insurance coverage through their parents’ plans, under the ACA expansion. Maybe you are one of these people who have already benefited from the ACA? If so, I’d love to hear your story.

I am the subscriber of our family’s Blue Cross Blue Shield health insurance plan. We have a lot of freedom, and coverage, in this plan. When we need to take Ben to Johns Hopkins to visit genetics specialists who are some of the few people in the world with any expertise in Schwartz-Jampel syndrome, we do not have to ask BCBS for permission. Ben receives 75 physical or occupational therapy visits a year–generous by any account–but these are usually used up by late Spring, at which point BCBS provides an Individualized Case Management program which assesses Ben on a month-to-month basis and provides him with coverage for additional chest physical therapy visits. Without these thrice-weekly appointments, Ben would be–and has been–hospitalized with pneumonia. All of Ben’s six daily meds are covered. In addition to the BCBS coverage, Ben qualifies for Massachusetts’ Medicaid plan under the home care waiver program called Kaleigh Mulligan, which provides him with additional insurance to cover the costs that BCBS doesn’t, such as some copays and much of his nursing care.

But Ben’s coverage hasn’t always been this complete. Last year Ben was deemed “too healthy” by the Commonwealth of Massachusetts, and thus his nursing coverage was reduced–which meant we had to pay out-of-pocket for a good chunk. After lots of emails and phone calls, we managed to get many of the hours reinstated through the unhealthy winter months, but the loss of coverage took it’s toll on our checkbooks.

So the answer to the quiz? If you remember your SAT test prep class, you may also remember that if you don’t know the answer, you guess B!

This from a family with double health insurance coverage for their son. You can only imagine what it’s like for parents of children who have lifetime caps on their insurance plans, who have $1500 lifetime caps on durable medical equipment (a wheelchair alone costs over $15,000), children who need to take experimental drugs, and children whose families can’t afford any out-of-pocket expenses, period. Although the $21,000 was a staggering amount for us, we know how much worse it could have been. And I know how much relief the ACA will bring to families of children with medical complications–as long as it’s still in place come the end of June.

Voracious Reader Ben

It's spring in MA, just like it was in Lake Konstanz, Germany, April 2011

It's spring in MA, just like it was in Lake Konstanz, Germany, April 2011

Ben no longer has any good books to read. This is what he told me this morning. Zero Hour, the latest in the H.I.V.E series by Mark Walden, automatically downloaded to his Kindle this past Tuesday morning, is now finished. He said, “I might have to start reading A Children’s History of England“–referring to a book I downloaded on his iPad sometime ago. Yes, I got flack for this at the time, but today his comment was serious. A book about history from Ben’s perspective is definitely better than no book at all.

When Ben was 1 year and 1 week old (precisely August 4, 2002–who says that there is recall bias when talking to parents about their children’s health history?), he got his first pair of glasses. It wasn’t until he was 11 months old that we realized he had dislocated lenses–ectopia lentis–and it was this discovery that started our family on our clinical genetics path. I thought it had been absolutely adorable when Ben brought a board book up to his face and squished it against his nose, and it was equally precious when he would push his face into mine as I held him in my arms, as if he couldn’t get close enough to me. In reality, he couldn’t see anything. Boy, I was so stupid.

His first pair of glasses were truly hideous. They had whitish-clear plastic rims, with super thick lenses to account for his incredible refractory issues, with those sorts of rings that go around the ears in the hope that the child won’t yank them off. I was told that Ben would leave them on because he knew how much he needed them. Indeed, the moment he put those glasses on, he looked around and said “oooooohhhhh!”. I cried. At 1 year old he was finally seeing what we all thought he had been seeing all along.

But Ben has always been sassy, and at 1 year old he knew the best way to get our attention was to rip those glasses off and throw them, especially when were out in public. So despite the seemingly ergonomic and safe design, those glasses did not stay on his face.

Depending on Ben’s vision stability, we might still find Ben with glasses on or off when he reads his Kindle or his iPad. Right now they are mostly on, thanks to Sherin recently finding a really good fitting pair, which means Ben can actually use the bifocal part of the glasses. Because of Schwartz-Jampel syndrome, Ben has trouble bending his neck. It’s easier to not have to lean over a table or desk to read–but it’s even harder to bring something to eye-level due to lack of strength and flexibility in his arms.

It’s because of the Kindle and the iPad that Ben is such a voracious reader. Bookshare allowed him to be able to download for free up to 100 books a month, but he needed to be sitting at a computer to read them. All you voracious readers know that reading on a sofa or in bed is just heavenly–and Ben couldn’t do this with his PC (it was even unwieldy with a laptop). Santa of Christmas 2010 brought Ben a Kindle and reading changed forever. He uses the next to largest font size, there is no glare, and a small light in the case allows him to read in the dark. Sometimes Ben is “missing’ in our house, but I now know to look in the family room. He’s somehow heaved his body onto to the sofa and is curled up with the Kindle.

About a year ago, an amazingly generous friend donated his “old” iPad to Ben when he upgraded to a new one–saying that Ben needed the iPad more than his own children did! With the iPad, Ben can download his Kindle books to the iPad using the Kindle app, but he can also download books from Bookshare using the Read2Go app, which works with Bookshare. It cost $20 to get the Read2Go app, but given that up to 100 books can be downloaded a month for free, this was small change.

We’ve run out of new ideas for books, so please send your recommendations! It will be a long weekend if I don’t get a book before tonight. Lucy, another voracious reader, and I will be at the Hunger Games opening tonight, to see if the movie can in any way compare to such an incredible book and series. But that’s another issue!

What is Implementation Science?

Cherry blossoms, frizzy hair, and a truly accessible Metro. Where am I? In Washington, DC, of course (you knew at the cherry blossoms!), attending the 5th annual NIH Science of Dissemination and Implementation Conference.

When Lucy was nearly 2, she and I traveled from London to visit my brother who was then working as a creative writing and English teacher at a private school in Georgetown. Ben was an unknown at that point, but I remember making one of many foreshadowing comments at that time–“if I was using a wheelchair, I’d want to live in DC”. Twelve years later, I still think that. It’s totally possible that Ben will end up here one day, if not for the accessibility but because there are so many awesome research and scientific opportunities.

Ben on the Mall, Washington DC, April 2009

Ben on the Mall, Washington DC, April 2009

As the mother of a child with medical complications, I’ve learned first-hand that not all evidence-based practices are implemented quickly or easily into our health care delivery system. For example, in the 1960s, the American Academy of Pediatrics started promoting the medical home model as a way of coordinating care for children with special health care needs. The idea was that each child and his/her family would be part of a pediatric practice that would really know the child and family, their needs, and would engage with them in shared-decision making about each step in the child’s care. But over 40 years later, not all children have access to such care.

We were one of the lucky ones, who moved to Massachusetts when Ben was one year old, and found the ideal pediatric practice who did promote such an idea–but Ben’s pediatrician has always been an early adopter. How can other health care providers adopt innovations in a timely manner and sustain them over time? That’s the point of implementation science. There is actually a science to sharing information on evidence-based practices with key stakeholders who need to be engaged to make changes in health care, and ways in which researchers, community-based organizations and patients can all work together to facilitate such change.

Simulation studies, ethnographic approaches, and more are the methodologies that will help me understand the role of social networks–from both the provider and the patient perspective–in implementing evidence-based practices during my two-year Implementation Research Institute Fellowship. I’m not specifically talking about Facebook, but it’s similar. Physicians, nurses, and other providers are part of both virtual and on-the-ground social networks. I’ve become part of a select social network called Mass Family Voices as the mother of Ben. We parents tell each other what services work for our child, which doctors to see, which organizations really go out of their way to help us. Health care providers do the same thing. They seek advice from others in their social network on what is the best way of treating a particular patient, the ways in which they should be engaging patients in their care. As the mother of Ben, I already know the power of the social network for disseminating information. As an implementation scientist, I hope to harness this power to motivate health care providers and organizations to improve mental health care for patients.

So, back to accessible DC. Is it too early to ask Ben to start thinking about a summer internship at the NIH?