Category: Patient Profiles
1 February 2017,
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       FROM WINTER 2017 ISSUE

Micah Fowler, a New Jersey 18-year old who has lived with cerebral palsy all his life, seemed like the perfect choice to play a leading role in the groundbreaking ABC TV series Speechless —he was a natural for the role of JJ DiMeo, a teenager who deals with the daily life challenges of cerebral palsy in weekly episodes.

Eleven episodes and nearly halfway through the 23-episode first season of the show, Micah and Tammy Fowler, his mother, took time to share some on-set insights about the series, and what makes taking on the character of JJ difficult, fun, and a sometimes humbling responsibility.

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills. It is usually caused by brain damage that happens before or during a baby’s birth or during the first three to five years of a child’s life, and can lead to other health issues, affecting vision, hearing and speech problems, and learning disabilities.

One of the challenges for Micah in assuming JJ’s character is the dramatic difference in the level of severity of their conditions: while diagnosed as moderate to severe early in his life, Micah’s condition is now considered moderate. While JJ is confined to a wheelchair, Micah is not—and only uses a wheelchair for long distances. JJ is non-verbal, and relies on a communications board and a human aide or family member who “translates” the messages JJ conveys through the board by using movements of his head to guide laser pointers in the frames of his eyeglasses. Conversely, Micah loves to talk, and “he talks a lot!” his mother laughs.

“As an actor,” Micah amplifies, “I have to rely on the emotions that JJ would feel in the scenes and try to have his personality come through. My goal is to make sure the audience knows what JJ is thinking and feeling at all times. JJ uses a laser pointer and aide to communicate, so I have to compensate physically by being extremely expressive with my facial expressions and body movements. Sometimes I’ve just wanted to blurt out what I (as JJ) am feeling and trying to say!”

Tammy recalls that Micah was nervous when he first booked the role because it’s hard to project “speechless” when you’re used to speaking. It required learning new skills and researching the role by meeting with and learning from non-verbal people who have CP and use speech devices.

“He never wore glasses; he’s never worn a laser on the glasses to point to words,” she explained, “so we watched videos on YouTube, and we had the glasses, the laser pointer, and a board at home; he worked on moving his head and finding the letters.”

Micah compensates for speechlessness by being extremely expressive with his facial expressions and body movements—while still carefully restraining his hand and arm movements to match JJ’s severity level. Micah has individual dexterity and can use his fingers to feed himself and manipulate things; JJ can only grasp things with his hand as a whole, but doesn’t use his fingers.

The role presents challenges on a deeper level, as well, since everything Micah does requires a greater expenditure of physical energy and effort because his muscles are weaker: walking with his walker, speaking—all are harder and take a lot more effort than an unafflicted person.

And although the role of JJ keeps Micah in a wheelchair all day on set, afterwards, when Micah has time out of the chair, he actually has to work harder to build up the lines of communication between his mind and the weak dorsiflexor muscles that enable him to pick up his feet. So when not filming, Tammy says that Micah makes it a priority to exercise in his apartment and at the gym to keep his muscles strong.

Tammy explains, “His future mobility depends on his using what he has now—or he could definitely lose some of his abilities if he doesn’t stay active and keep those muscles stretched.”

“Micah is ambulatory with an assistive device like a walker, he is in a wheelchair for longer distances and at school, but at home he uses a walker,” says Gary Michalowski, CPed, BOCP, BOCO of Lawall Prosthetics & Orthotics. Michalowski has been fitting Micah with bilateral molded ankle-foot orthoses since 2002, when he was just four years old.

Micah is also currently finishing his high school education via long distance: “He has a private tutor on staff 15 hours a week,” Tammy notes, “but Micah is in so many of the scenes that they can’t fit in all 15 hours during the work week. That means he has to do five of those hours on Saturday mornings. He’s looking forward to coming home when we’re done filming Season One in mid-March so he can go back to his high school and graduate with his class this year–so he won’t have to do that anymore!” Tammy laughs.

In addition to the differences in their physical capabilities, Micah and JJ also differ significantly in character and personality, she observes.

“JJ is more mischievous and really enjoys giving his brother a hard time. In real life, Micah is not mischievous at all. He’s not one to tease his sister like JJ teases his brother—and Micah has a really sweet personality that doesn’t want to give anybody a hard time or see them hurt.”

There are occasional similarities, she admits; once in awhile a family member watching the show will catch a familiar facial expression and say “Ah! That was totally Micah!”

“There are quite a few personality traits JJ has that is not Micah, for sure, but he does a good job of portraying that different character,” Tammy points out with pride.

The proof is in the reviews the highly-acclaimed series has received to date. Rotten Tomatoes gave Speechless  an extraordinarily high rating of 98%, and commented that it “speaks to a sensitive topic with a heartfelt lead performance and a fine balance of sensitivity and irreverence.”

The show provides entertainment that enlightens; TV Guide’s review calls it “a clear-eyed and empathetic exploration of life in a special needs family that makes plenty of room for hilarity.”

Micah is keenly aware of the additional burden that he carries in portraying JJ’s character. He’s thrilled to be identified as a role model by professionals in the special needs community, as he has always enjoyed using his special gift for encouraging others—and recognizes that this is an incredible opportunity to do so. While it’s a breakthrough role for him, it’s also a groundbreaking opportunity for the entire community of those who deal daily with disabilities.

“Growing up as a huge television and movie fan, I couldn’t help but notice the lack of representation, the lack of lead characters diagnosed with disabilities,” Micah recalls. “The fact that I get to portray a lead character dealing with cerebral palsy on prime-time television is so exciting for me—and exciting for us!

“My family has always given me unconditional love, supported me in everything I’ve wanted to do and pushed me hard! I have been blessed to grow up with a great support system and I know not everyone has that. I’m honored that I’m able to represent the special needs community on such a big platform. I feel a great sense of responsibility to them and hope to make them proud.”

Micah’s own personal journey from adorable tot to insightful representative, Hollywood star and role model for thousands with disabilities has not been an easy one.

Tammy recalls the shock of receiving that initial diagnosis when Micah was just a baby:

“I knew something wasn’t quite right when he wasn’t reaching milestones like rolling over and sitting up when he was 12 to 14 months old. The neurologist who saw him immediately recognized it as cerebral palsy, and confirmed it with an MRI and other tests. It was devastating at first. They didn’t offer any long-term prognosis as far as his capabilities down the road, and it was the unknown that was scary. It was definitely a difficult time.”

His parents decided they would do everything possible for him, and that included pursuing therapies and alternative treatments not only locally but also out of town and even out of the country.

During the first five years we traveled a lot”, his mother recalls. “Then we started regular physical and speech and occupational therapy sessions three times a week at Specialized Children’s Hospital in New Jersey. We also began seeing Dr. Kirk Dabney (at Nemours Alfred I. duPont Hospital for Children) in Delaware, which is where we connected with Lawall orthotist Gary Michalowski.”

There Micah was able to get his braces from a multidisciplinary team working closely together—something Tammy particularly wanted and still appreciates for the convenience and confidence it has provided her through six surgeries over the years to correct his condition—several of them orthopedic procedures.

“His muscles were too tight,” she explains. “As he grew, the spasticity* kicked in and his muscles would be super tight, so he had to have surgical muscle transfers and muscle releases.”

Michalowski has been representing Lawall at the duPont Children’s Hospital for more than 30 years, and began partnering with Dabney to provide care to Micah since 2002, when Micah was four years old.

Michalowski began by making the bilateral molded dynamic ankle foot orthoses (DAFOs) that assist with decreasing Micah’s strong extension tone and addressing equinovalgus pathology issues secondary to his CP.

He has continued providing new braces on a roughly annual basis over the last 14 years as Micah has outgrown them, with occasional additional visits to adjust fit and change the braces’ padding and straps.

About four years ago, a major surgery reconstructed Micah’s feet, building in an arch and adding pins to turn the foot inward to repair a gait anomaly that caused weight bearing on the inside of his ankles rather than the soles of his feet. He wore casts on both legs for eight to ten weeks following the surgery.

Soon, Tammy believes, he’ll stop growing, which should eliminate the need for further corrective surgeries.

“Micah is just a great guy—super personable,” Michalowski believes. “He’s a very smart young man and a delightful individual. The stardom he’s enjoying couldn’t happen to a better person. I’ve known and worked with him and his mom, dad, and grandfather over the years—and this is a huge blessing for the whole family.”

Micah recalls Michalowski and Lawall’s service as an integral part of his early life: “I truly hope every other kid with CP in our country has access to an amazing team of orthotists like I did growing up. I am just one of many lives they have helped through their work. Thanks to them for believing and continuing to invest in kids with special challenges like me.”

“Gary has been measuring, fitting, and fabricating Micah’s leg/foot braces every year since he was four,” Tammy adds.

“The Lawall location at duPont Children’s Hospital truly provides top level care; we specifically chose to get his braces fit there because it has allowed Gary and the team to consult directly with his orthopedic surgeon and post-surgery therapists—all at one location during each visit, and to create orthotic devices that are truly customized to meet Micah’s specific needs. Gary and his team are amazing!”

Going Hollywood

Oddly enough, Tammy explains, it was his sister’s extraordinary talent and early success in local children’s theatre and her subsequent series of starring juvenile roles on Broadway that paved the way for Micah, and helped to open doors when his interest in acting was re-ignited.

It started when Tammy took both children to see a production of Oliver  at their local community theatre. “Kelsey kept trying to get up on the stage during the whole show,” Tammy laughs, “and saying ‘I have to be up there!’ I spent the whole show picking up my daughter and bringing her back!”

When Kelsey started appearing in other local productions, Micah also wanted to try a role in The Wizard of Oz —and was a big hit being pulled around the stage by Munchkins in a flower-bedecked Munchkinmobile.

He lost interest, however, because there was too much boring wait-around time, while Kelsey pursued her muse with a burning ambition, hard work and study that took her through ten more local productions and set her sights on New York City.

“We were really against our kids being in show business—very leery of it. My husband and I were working and it just wasn’t practical,” Tammy recalls.

But when Kelsey’s directors and vocal coach insisted that her talent deserved a shot, Tammy took time off to take her to a few Broadway auditions—and the rest is history.

“She booked her first role in Grey Gardens when she was nine years old, followed by another show (Sunday In the Park with George) both of which Kelsey performed in for a year and then another (Mary Poppins)  which Kelsey was in for 2 1/2 years on Broadway, and seven months on the US National Tour–then Bonnie and Clyde  on Broadway and beyond.

“Basically, she did five years straight on Broadway, in eight shows a week, six days a week—with maybe a break of a month or two in between,” Tammy recalls. “Doing Broadway with Kelsey was a full-time job for me, but when she went off to college I thought I could start my own career as a real estate agent.”

“Fate soon intervened in the form of Kelsey’s agent, however, who had met Micah along the way, and had been sending him television and movie auditioning opportunities, which he found more interesting than theater. He did an appearance in two episodes of Blues Clues and two appearances on Sesame Street  and then at age 15 booked the role of Barry in the feature film, “Labor Day” starring Kate Winslet and Josh Brolin.

It took more than a year, and several homemade audition tapes, personality tapes, and sample scenes in which Micah was videotaped playing JJ’s role, reacting to other character’s lines (read off-camera by his parents) from the series pilot for Speechless.

“Everything was done long-distance, via tapes made in New Jersey which were then sent digitally to the agent in New York and the casting director in Los Angeles.

“We got the call on Micah’s 18th birthday—March 5th—that he had booked the role!” said Tammy. “It was incredible. We went out there and did the pilot last spring, over five or six weeks, then came home. Although only 45-50% of the 200 pilots shot each season ever appear on the air, when the waiting was over, we learned in May that the series was being picked up and we had to be out there to start filming in August.”

Now, as of this writing, nearly halfway through its first season, with a boatload of positive reviews and enthusiastic responses from viewers and critics alike; it seems likely that the show will be picked up again for next year.

“We’re hoping!” Tammy exclaims fervently. “We’ll find out between March and May!”

Meanwhile, when production wraps for Season One of Speechless  in March, Micah will be back home, enjoying the life of a high school student, hanging out with friends and going to the movies. He’ll be keeping up with the TV critics, watching YouTube videos where reviewers discuss his favorite different shows and series –like Marvel and DC Comics-based shows such as Arrow  and Flash —and, of course, Speechless.  A devotee of Star Wars  and all its incarnations, he also enjoys video games and plays on a sled hockey team with other competitive special needs players.

He regrets missing much of the season with his east coast New Jersey team while filming in Los Angeles, and hopes to rejoin them upon his return to New Jersey. He also hopes to join a sled hockey team in Los Angeles, within close driving distance of the Speechless  studio if and when Season Two production begins.

In the final analysis, Micah’s life has been dramatically changed by his involvement in a show that has made him not only an internationally famed actor, but an ambassador—and he and his family are awed by the number of lives he has touched.

The Cerebral Palsy Foundation (consultants for the show) includes comments on its website from Speechless  viewers whose lives have been changed—individually or as a family. Micah is an Ambassador for the Cerebral Palsy Foundation and Micah’s social media handles are: Twitter: @micahdfowler Instagram: @micahdfowler Facebook: www.facebook.com/officialmicahfowler

“It’s just amazing how much the show is impacting viewers,” Tammy marvels.

She mentions a grateful thank-you from a mom whose wheelchair-bound 12-year-old had been deeply depressed by her situation for two years, convinced that her life and her potential were severely limited by her wheelchair. The show completely changed her daughter’s outlook. “Thank you for giving my daughter’s smile back to me,” the mother wrote.

“It’s really cool to hear stories like that and we get them constantly,” she reports. “—how the show is renewing hope for kids with disabilities, giving them a vision and encouraging them to dream for themselves.”

Michalowski notes that cerebral palsy is not an uncommon condition. In fact, according to United Cerebral Palsy there are approximately 765,000 individuals in this country who manifest one or more of the symptoms of cerebral palsy. Thus, the show’s potential—through Micah’s talent—to reach an audience in need of such encouragement is enormous..

The expectations the show raises are not unrealistic. Michalowski points to a 90-year-old patient he had served for 33 years—who in turn served clients of her own as a speech therapist—and to another professional with CP who is a nurse practitioner specializing in neurology cases.

Micah’s vision for the show is one that allows viewers an inside look at the challenges faced daily by those with special needs and their families.

“Each family has its own issues and challenges, unique and different,” Micah reflects. “As viewers watch week after week, with time I hope that they begin to see the DiMeo’s and other families like them as any other typical family—facing their ups and downs, good days and bad days like everyone else.

“I think Speechless  will make people more comfortable around people with disabilities, and encourage viewers to look beyond the limitations of special needs people in their own lives and discover what they’ve been missing—their love, personality, and yes, even their humor.

“And I hope other kids with CP will work hard to chase after their dreams and their future, and not let their disability hold them back.”

To such young people, he offers advice: “Do not let your disability define who you are or what you can do in life. Believe in yourself! Follow your own dreams! Don’t set limits on yourself! Persevere, even when it looks impossible—and always keep believing!”

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