Therapeutic Riding Rules

Ben riding Snoopy at BiNA Farm For much of the past six years, Ben has paid weekly visits to friends Blue, Rags, Bay, Snoopy and Terry each Saturday morning–and today was no exception. Terry is the Co-Founder and Director of Therapeutic Riding at BiNA Farm. The rest? Horses.

When Ben was 4, I realized he needed more than one physical or occupational therapy a week to keep his body limber and to fight the myotonia. With the help of his physical therapist at Spaulding Rehabilitation Hospital, I started to look into therapeutic riding lessons at local barns. I found Terry Snow, who at that time ran her own part-time riding program through sheer determination and a handful of dedicated volunteers. Terry suggested that Ben first observe a session before starting, but he ended up getting up on a horse (Bay) anyway, and the rest was history. Apart from longish recoveries from hip and knee surgeries and the occasional battle with pneumonia, Ben is usually on a horse once a week.

Groundbreaking research by Emmy Werner at the University of California, Davis, has found that there are two predictive factors for a child’s resilience in the face of adversity: 1) a supportive person who stands by you no matter what and 2) being really good at at least one thing. Ben is very fortunate in that he has been surrounded by supportive people (who can be parents, aunts, friends, teachers, and more)–but we had to work harder at “being really good at something”.

Horseback riding proved one thing he became known for being good at. In Kindergarten I’ll never forget his teacher telling me how each child in the class was explaining something they like to do. Ben told his classmates that he likes to ride horses. One child said “How do you get your wheelchair on a horse?”. Ben had a good chuckle and explained that he gets out of his wheelchair and then gets on a horse! It’s been a favorite story for a long time, but it showed the importance of explaining to others that just because he is in a wheelchair sometimes doesn’t mean he’s in it at all times.

Therapeutic riding is also fun, thanks to Terry and the 3 dedicated high school girls who are at the Dana Hall School barn every Saturday at 8 am to get Snoopy–the horse Ben now rides–ready with just the right gear for Ben. I know that those of you with teenagers will be impressed with these selfless, early-risers! Ben sits side saddle on Snoopy for the first 5-10 minutes to warm up, with two girls walking on either side of the horse supporting Ben’s body, and one girl leading Snoopy in the front. Ben’s body is at first too stiff to straddle the horse, but soon Snoopy’s slow, rocking movement and his warmth get through to Ben’s muscles and he is now ready to straddle the horse.

Once Ben is sitting forward, there are obstactle courses to travel–today it was a 7-step course involving walking over poles, picking up rings, throwing balls, identifying signs and more, and Ben does all the leading, turning and stopping. Sometimes Snoopy listens, sometimes not, but if not, Terry keeps Snoopy in shape. Terry also plans trivia games for Ben to play while on the horse, to keep his mind off the physical difficulty and concentrate on the fun (I’ve posted before about how Ben loves mental work). And no one greets you more warmly on a cold, Saturday morning than Terry, who has a million other things to do but acts like being in a barn with Ben is the only place she’d rather be.

Children’s Hospital Boston Listens!

Ben with the fish at Children's Hospital Boston, 2007

Ben with the fish at Children's Hospital Boston, 2007

I love it when I feel heard. Not just head-nodding or pretend listening, but the kind of listening that leads to action. Children's Hospital Boston has really heard me.

Today, Ben, my husband Sherin and I attended one of Ben's many orthopedic appointments. Ben sees orthopedic specialists for his hips, knees, wrists/elbows, spine and also a general orthopedist. We are very familiar with this department.

Years ago we decided that these multiple-times-a-month appointments would only be manageable if we split up--I do one, Sherin does another. But some appointments are important enough for a "command performance", which means we both go.

Ben's had some numbness in his shins since his November 2011 surgery and we wanted to follow up on this. It was also time for new xrays to track any changes in the knee bone growth. But really--I love this surgeon. He's amazing. He emails me, he calls my cell phone, I have his cell and home phone numbers which I only use when he tells me to call him, and we even invited him to Thanksgiving dinner. He considered it, but decided he should probably be with his own family, but Sherin's unconventional swordfish dinner was tempting!

We've always had terrific communication with this surgeon. This isn't my point of this post.

My point is that I have been telling Children's Hospital, and their Center for Patients and Families, that parking rates for families of children with multiple-week (or heaven forbid, multiple-month), long-term hospitalizations is just outrageously expensive. In 2006-2008, Ben had several multiple-week hospitalizations related to his two tracheostomy surgeries, pneumonia, and two femoral osteotomies. All of these involved ICU stays. Charlotte was 9 months old in 2006, and Lucy, who was 8, also needed her parents. Sometimes we drove in an out of Children's Parking Garages 3 times a day--each entrance at $9.00 a pop, the discounted parent rate. Multiply that $27 x 14, 21, 28 or longer, and you get the idea of what just parking costs are incurred during a child's health crisis. Never mind the eating on the go and the out of pocket health care costs.

Today, when I was paying for parking, I noticed a brochure entitled "Family Extended Stay Parking". Intrigued, I read it on the spot. It says:

Long term visitors can now enjoy the freedom to come and go without needing to visit the cashier stations. With a minimum up front purchase of one week for $54, you'll pay only ONE LOW DAILY RATE of $9.00 (my capitals) regardless of how many times you exit the garage.

Hallelujah! I, and hundreds of other parents, have been heard!

“Ben’s Busy Day at the Hospital”

Have you ever looked for books to help your child cope with an upcoming surgery, or to help your child get through a long bout of illness? If you have, then you know that most children's books in this genre are based on one type of surgery (eg, ear tubes) or for minor activities like visiting the dentist. Very few books are out there for children who might be at the hospital each week, or for kids whose health problems won't go away but instead need to be actively managed. How do they cope?

Sprague's entry into the Scholastic KAA competition

Sprague's entry into the Scholastic KAA competition

Under the guidance of Sprague School's art teacher, 21 current 4th and 5th graders at Sprague created this book using techniques of collage, photo cropping, colored pencil drawings and more back in June 2008 before Ben's double femoral osteotomies. The idea had been to empower Ben during his upcoming surgeries and to emphasize the ways in which Ben makes sure he has fun during his many trips to the hospital-- but it also really helped the kids work together on a fun art and writing project!

Now, the kids are submitting their work to the Kids Are Authors national competition hosted by the Scholastic Book Fairs. We know it's a long shot, but we believe in optimism! Thank you Jen Stabnick for making this possible!

Good Day, Good People!

My cabbie in New Orleans this morning hailed me with "Good day!" as I left my hotel bright and early to join colleagues at Cafe du Monde, the 24-hour eatery famed for its beignets and chicory coffee. I asked the cabbie if there is a good way to respond to this and he said "We're coolin'". If anyone is from New Orleans, you'll have to let me know if he's pulling my leg.

For those who use wheelchairs, I was really pleased to see that Cafe du Monde is accessible from the street level, and that the small round tables are surrounded by movable chairs--which means you could easily slide these chairs away and make room for a wheelchair. There are a lot of tables and chairs packed in there, but at 6:30 am it was not overly crowded. It might be different at 1 am!

I'm in New Orleans to participate in the VA HSR&D Scientific Merit Review Board meeting. I've read some great scientific proposals that I hope will strengthen the way we provide care to our deserving Veterans.

Ben practicing the snare drum

Ben practicing the snare drum

Before I left Boston, I attended band rehearsal with Ben at Sprague School. I'm Ben's heavy--I pack up and carry his snare drum, his bells and mallets, and all the music. I then unpack this at Sprague and set it up with a music stand and get everything in place so that he can easily access it. I shuffle the sheets of music around as needed. All other band members do this on their own. I know Ben would like to do this himself, but he never complains that I have to do it for him.

With the help of the assistive technology specialist, Ben's music is about 70% larger than other kids' music, so that he can more readily see his notes and follow along. Still--the band conductor has to stop and start the music all the time, in order to focus on different parts of the song, to ask certain music sections to work on specific measures, and so forth.  Ben isn't able to see where he should start again, so in addition to being his arms and legs, I'm also his eyes.

What I love most about Tuesday band rehearsals is that every 4th or 5th grader in the music room doesn't bat an eye that I'm there. They know that Ben is playing the music on his own, and that I'm only there to facilitate this. Ben was very reluctant to join the band, probably because he knew he would have to have me there. But seeing that my presence is considered a non-event by his bandmates has made it possible for Ben to just enjoy playing the music and being part of a group.

Those Spraguers are such good people!

Hello world!

Rani and Ben on a Thames River Cruise

I'm on London time after a glorious week's visit there, visiting old friends and nostalgic settings. I'm often awake at 4 am, thinking about the things I should be doing, but also about the things I really want to do. One thing that I've wanted to do was write a blog about our lives with my son's extremely rare genetic condition.

Ever since Ben was diagnosed with Schwartz-Jampel syndrome (SJS) in 2003, I've shared my thoughts and feelings about access to health care, doctor-patient communication, shared decision-making and the ups and downs of family life with anyone who would listen, and often with those who didn't want to listen.  Scholarly and commentary articles have been published in peer-review journals, essays  have been published in disability awareness magazines and local newspapers, and a hospital-linked blog has been maintained for over five years.

But I've come to a new page in my parenting, and it is in this blog that I'll express these new thoughts. I'll talk about traveling with Ben's wheelchair, walker and medical supplies; I'll describe what it's like to listen to patients' stories about their feelings of stigma when I know all too well what they are experiencing, yet I need to keep an objective distance; and I'll mention the random acts of kindness that keep me and our family going on a daily basis.

I hope that this blog will be helpful for the one or two families who have children with SJS who contact me every year to find out what I know about the condition--because, really, let's face it, when 86 people in the world have this condition, not much is known. I also hope that this blog will reach the wider community of those with mobility and medical challenges who know that every outing has to be researched and examined in advance--spontaneity is not often the rule. And I hope that those without knowledge of these challenges will appreciate how I and others have learned so much from Ben and how he has braved every situation he has faced with more courage than hundreds of us could muster in a lifetime.