We know that many of our community members are feeling a little bit pent up lately. It's really hard to quarantine, especially as the weather grows nicer. So today we're offering Kathryn Jenkins reading her wonderful book The Inclusion Alphabet for you and your families. This is a book for all ages and abilities, and as Kathryn explains in this video, there are different ways to read it depending on your wishes and needs. 

Follow @inclusion_project on Instagram to learn more about Kathryn's work, and stay tuned for more collaborations between Different & Able and the Inclusion Project! 

Editor's Note: We are working on adding closed captioning to all our videos, and hope to accomplish this in the next few weeks. If you would like a transcript of this video before then, please contact espampinato@differentandable.org. 

“Your child has the physical skills of a newborn,” is never something a parent of a 1 year old wants to hear.

Given our daughter’s many diagnoses, it perhaps would have been justifiable to give up and accept what many of the experts were describing as a life of limits. A life of can’ts. However, in our case, with a lot of work and determination from many people, 12 years later, our daughter has become a rhythmic gymnast and a dancer. Erin’s current reality would not be possible if we had accepted her original prognosis.

Erin was born 8 weeks early with Down syndrome and just about every physical complication that could come with it. She had 3 major surgeries in her first 6 months and spent almost half of her first year in the hospital. When she was cleared for Early Intervention at 6 months, we began working with Developmental, Speech, Occupational, Physical, Music, and Swim therapists along with a nutritionist. She also took a weekly inclusive music class.  We immersed ourselves in Signing Time videos, and Erin had an age appropriate vocabulary—with sign language being her first language. She used an NG tube for the first 11 months of her life. She and her team worked hard. Her siblings were also expert play therapists and creatively included Erin in every activity they could. Shortly before her third birthday, Erin transitioned to the school based Early Childhood program, and a hospital based Physical Therapy program, using a walker and crawling. She was able to first walk in swim therapy with the buoyancy support.  One week after having ear tube surgery and with a candy reward system her sister devised, Erin walked for the first time on Halloween, just before her third birthday.

Sometimes the most amazing things become life changing break throughs. Looking back, we had two of those break throughs. Erin’s Aunt and Uncle sent her a rhythmic ribbon for Christmas. Nothing fancy, but Erin would play with the ribbon for hours. She would put the song, “Let it Go,” on repeat and dance and dance. I began searching for opportunities to develop this interest and found that Special Olympics offered rhythmic gymnastics. With the help of her PT at the time and her sister the dancer, Erin began applying all she learned into an athletic framework. Having mastered crossing the midline at a younger age, we hadn’t worked on it much. That is until her ribbon routine called for a figure 8. What her sister and I thought would be easy became a complex motor planning exercise months in the making. The advantage of the Rhythmic Gymnastics framework was that, while therapy isolated and made it difficult to attend extracurricular activities, a recreational based model provided socialization, confidence building, and added a skill development. She moved from being a patient to a performer. She then became involved with Unified Sports, which is an inclusive model, gaining peer modeling and socialization. This transition to a recreational based program gave her a chance to perform with her friends at a Special Olympics Gala. Her years of PT work allowed her to overcome her physical challenges and use her grace and strength to show others the possibilities.

The second break through for us came when a service dog named Cassie joined our family. At the time, Erin was using her hard-earned physical therapy work to elope. Cassie would alert us if Erin was headed out the door. Erin really did not appreciate the sensory overload of having a dog bark at her and stopped eloping within 3 or 4 months. We also trained Cassie to track Erin. This gave us great comfort and playing hide and seek with a dog was a wonderful activity for Erin and her friends. Erin also helped train Cassie, which provided fabulous leadership and speech opportunities. Cassie was a great reinforcer of ending consonants, as in “sit,” “down,” and “shake.” Cassie was great support for 9 years, taking us for walks, playing ball, and being a loyal friend. She also taught us about saying goodbye this week, as she passed over the rainbow bridge, Erin insisting she be by her friend’s side, as Cassie has been by Erin’s side all these years.

Our other animal partners have been the horses at the Hanson Center Therapeutic Riding Program. Horse back riding is not only good for core strengthening, but it provides a valuable connection to a beautiful creature.

To continue our transition from medical based PT to life-long recreational based exercise, we have begun working with Angela Rodriguez, owner of Kines Training and Coaching. As Angela says, “Exercise gives you confidence, makes you strong mentally and physically, makes you self-sufficient, and helps you handle every day life.” These are things I strive for myself and wish for all of my children. They are also key for achieving joy regardless of ability. Erin is currently working on yoga with Angela, improving balance and strength. The two and Erin’s sister are also working on breathing to help with focus. “Breathing brings back the focus and supports regrouping and changing your reaction,” Angela said.

Life-long fitness is much more effective when people find and do what they love. For children with special needs, doing this may require a medically-based therapy program to develop skills and strength needed to move into recreational-based programs. Therapists working with Special Olympics and other programs can help their patients continue to receive benefits long after treatment has finished.

“Repeat after me: newspaper, rose, hamburger”.

No response.

“Ms. Smith, repeat after me, newspaper, rose, hamburger”.

No response.

The clinician looked at 22-year-old me and said, “Ms. Smith has progressive Multiple Sclerosis – this is a very severe case.”   This was my last day at my clinical placement, it was all too much for me to handle.

I was diagnosed with Multiple Sclerosis in 2012; I was 22 at the time.  They were not sure what was wrong with me at first.  I was a frail, 20-something college student, following a strict “vegan diet” to cover up underlying issues with food and chain smoking American Spirits – I was the poster child for malnourishment and ill health. But my symptoms had suddenly become much more serious than just poor general health.  My symptoms consisted of going blind in my right eye when overheated, stressed, working out, eating soup, drinking coffee, sitting in fluorescent lights, smoking, drinking, sitting in class, putting on eyeliner – okay, I was basically blind all the time! For a long time though, I hid my symptoms. I would tell my friends, “It’s getting better!”

I went through a year of tests – spinal taps, blood work, MRIs, you name it.  My mother has had Multiple Sclerosis since 1998 and with my family history and the nerve damage in my right eye, the doctors wanted to be thorough.  One hospital discharged me and told me to take vitamins. After a year of multiple hospitals, cities, and doctors, I was diagnosed.  Multiple Sclerosis, according to the National Multiple Sclerosis Society, is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body.  No, I wasn’t going to die – but it sure felt like that sometimes.

I was a Speech-Language Pathology undergraduate student at the time and my final placement was at a rehab center in Brooklyn.  I could tell my professors were nervous about sending me there after hearing of my recent diagnosis, but I felt positive about the placement; after all, I had been living with my mother having this disabling disease my whole life.  I even wrote in one of my papers that I wanted to work with adults with neurogenic disorders.  At the time, I don’t think I realized how much this placement would affect me.  One client I met had progressive Multiple Sclerosis, and her mind was gone.  No responses.  No eye contact.  No “connection” to her verbal language.  The clinician explained that they saw her decline and watched this disease take everything she had to offer. I was a good student. Straight A’s, always punctual, engaging and communicative.  I stopped going.  This was my final year of school, and I just gave up.  It was too much.  Luckily, Marymount Manhattan College has wonderful and empathetic professors who understood what I was going through and changed my placement to a preschool. I will forever be thankful for that.

Now that I’m in graduate school, I look back on those moments of weakness in the first months of my diagnosis. I am now, a completely different person.  My Multiple Sclerosis has changed me, and for lack of a better term, for the better.

I left New York City in 2014 to move to Philadelphia.  Philadelphia was closer to my parents and had cheaper rent.  I had always an interest in nutrition, hence my vegan diet at such a young age, and I started learning how to take care of myself through nutrition.  I started accepting that my condition was incurable, and I needed to handle it.  I chose to stop taking my disease-modifying drugs, which left bruises all over my body, and manage this disease in a more holistic fashion.  I kept up with my vegan diet, but incorporated more whole, plant based foods.  I started juicing, eating raw foods, and exercising daily.  Now, by no means, am I perfect at this point.  This has been a journey and quite the process.  In early 2015, I met my future husband, and we moved to Colorado a year later.  Still eating whole foods and managing my Multiple Sclerosis naturally – I remained symptom free. I started my graduate degree in Speech Pathology, and my Multiple Sclerosis was nowhere to be found.  I felt like I healed myself.  I wrote a blog and gave diet and exercise advice to everyone who asked (and people who didn’t ask).

And then, in 2017, I forgot how to walk for the first time.  After a year of a vigorous running schedule, graduate school and a miscarriage, my body said no more. My diet was good, but it wasn’t great.  As cliché as this sounds, life happens.  Things take the back burner – things that shouldn’t.  At the time, I was off disease modifying drugs for 3 years with no symptoms. I became lax.  I had too many glasses of wine some nights, and living back in Philadelphia, too many vegan cheesesteaks.  Just when I thought I was done with this disease, I was right back where I had started – in that god awful tube for another MRI.  My legs were weak and shaky and I had no feeling in the left side of my body. Once again, Multiple Sclerosis wasn’t going to kill me, but it sure felt like that.

I have a lot of flaws and a lot of things I do not like about myself.  But there is one thing that I’m pretty amazing at: I don’t take no for an answer.  Multiple Sclerosis has taught me that.  I can barely walk? Nope, not happening.  I took it to another level.  I stopped running, even as much as I loved it; I felt that it was too much on my central nervous system.  I started doing yoga instead – and practicing meditation. I stopped drinking – it didn’t do anything for my body. I began asking myself a question every day when waking up – what can I do for my body and my health today? What is the best for Monica? I continued eating a whole food, plant based diet and started eating 9-10 cups of raw leafy greens a day. I also began supplementing with vitamin D, which is great for people with Multiple Sclerosis.  

When asked to tell my story I find myself thinking – well what part?  Do you want to know about the 22-year-old that couldn’t handle her clinical placement due to an unfortunate diagnosis, who you could find on East 90th street chain-smoking?  Do you want to know about my years of healing where I became a spokeswoman for healing multiple sclerosis and then miserably failed by losing my ability to walk? Do you want to know about my current diet and how I overcame failure?  Ask me for my story in a year, and it will be longer. There will be more successes along with hardships.  With or without an unfortunate diagnosis, life goes on. Our story lengthens as we grow as individuals.

Repeat after me, “hamburger, rose, newspaper.”

Today, I can repeat.  And that’s all that matters.

The Beginning

Annabelle was born at 10:30 pm on November 1st, 2016 at 34 weeks gestation. She weighed only 4lb 4oz. Annabelle was brought into the world early by an emergency caesarean section as a result of reduced feral movements which arose due to pre-eclampsia. Pre-eclampsia is a condition which affects a small proportion of pregnant women and while the cause of it is unknown it is thought to occur when there is a problem with the placenta.

After being in and out of hospital for scans, monitoring and numerous checks for 2 weeks prior, it was decided that our little girl wasn’t happy where she was and needed to be delivered.

Annabelle was delivered breech and needed resuscitating. It took several minutes to get her to take her first breath. She was transferred to the Special Care Baby Unit with the support of oxygen. A cranial ultrasound revealed a grade 1 brain bleed which resolved prior to her discharge and she had phototherapy on day 2 due to being jaundiced. After a couple of days in special care Annabelle started to thrive and the staff were amazed at how well she was doing. Everything seemed great and Annabelle was discharged on the eighth day of her life.

The next few months everything was going well. Annabelle did battle with a cow’s milk protein allergy which caused her pain and discomfort and she also suffered from reflux causing her to vomit several times a day (which we now know was a symptom of her Cerebral Palsy and the lack of tone in her stomach muscles) but once we knew how to manage this and removed dairy from her diet, things became easier.

As first time parents you watch everything your child does, encourage them to hit their milestones and brag to your family and friends about how well they are doing. Concerns about Annabelle’s development began, however, when she was still not able to sit without assistance by 9 months old. She was also doing various things that just seemed ‘different’: for example she had strange uncontrollable movements, she favored her right arm over the left and her hands were regularly clenched in fists. We put it down to Annabelle’s prematurity but we were secretly concerned and spent hours upon hours scouring the internet to research possible causes of the signs she was exhibiting. While Cerebral Palsy was at the front of our minds, it was something that was not spoken of.

Cerebral Palsy and the Diagnosis

Cerebral Palsy is the umbrella terms for lifelong conditions which affect movement caused by a brain injury or abnormal brain development, which occurs around the time of birth. Annabelle was formally diagnosed with Cerebral Palsy just after her first birthday. While the diagnoses was not a shock, it was extremely hard for us to absorb. For the past four months, we have spent time coming to terms with the diagnosis and learning about the journey which lies ahead of us.

Annabelle is still not able to sit without assistance, she is not able to crawl, she is not able to stand and she is not able to walk. All four of Annabelle’s limbs are affected as well as her trunk.  

Explaining Annabelle’s ‘differences’ to others is hard as our emotions often take over, but we are hoping that over time it will become easier.  We want to share Annabelle’s journey to help raise awareness of the daily challenges that children with Cerebral Palsy face.

Living with Cerebral Palsy

Over the last four months we have had numerous hospital appointments, brain scans (EEG and MRI) and therapy sessions, all of which have helped to put the pieces of Annabelle’s puzzle together. This support has made her stronger, but only time will tell how ‘different’ she will be. No one child with Cerebral Palsy is affected in the same way and consequently, it is impossible to predict the future.

Annabelle attends physiotherapy, speech and language therapy through the NHS who have also provided her with her Jenx Corner Seat and have ordered her a standing frame to enable her to have some mobility as she grows. Annabelle has recently benefitted from the work of two charities, Dame Vera Lynn Children’s Charity and Whoopsadaisy, both of which specialize in helping children with Cerebral Palsy and other motor disorders. They provide Annabelle with Conductive Education and also Music Therapy. Every morning Annabelle is required to do various stretches to help loosen her muscles and on a daily basis. Annabelle does therapy at home which we incorporate into play to make it more manageable and fun for her.

We are adapting to deal with the ‘different’ life Annabelle is going to live as a result of Cerebral Palsy. We know that as a family, with unconditional love for each other, we will help Annabelle to reach her full potential.

She may be ‘Different’ but she will be ‘Able’!

You can learn more about Annabelle's story on her website and on social media, Instagram and Facebook

Digby Webster and Tracie Sammut have made waves in the art and TV world – but successes aside, both face an uncertain future.

Digby Webster, a widely exhibited visual artist, was born with a genetic disorder known as Down Syndrome. Tracie Sammut, an actress who has been featured in classic Australian TV shows such as Home & Away and GP, and received a prestigious Logie Award for Special Achievement in 1993, shares this disability.

Digby, 30, and Tracie, 39, still live at home in the care of their families, who are anxiously watching as they take their first tentative steps towards independence.

Flying Solo follows Digby, Tracie and their friend Tom, 36, over the course of four years as they pursue their new lives, juggling their passions with new responsibilities.

Digby tackles fundamental skills such as money management and cooking, even undertaking a new job as he prepares for his newest exhibition. Meanwhile Tracie decides to take Tom under her wing and train him as an actor. But for Tom – now living on his own – pursuing his dreams of professional acting proves an uphill battle as he finds himself struggling with time-management, household chores and depression.

The trio's journey is chronicled in Flying Solo, a feature documentary directed by Australian-American filmmaker Ehsan Knopf, which premiered online on March 21, 2018, World Down Syndrome Day.

The film, made in close collaboration with its subjects, captures their hopes and the hurdles they – like many people with intellectual disabilities – hit along the way. It features frank discussions about disability by the subjects and their friends and families, as well as inspirational scenes of mentorship and friendship.

A social impact documentary, Flying Solo pulls back the curtain on the unexpected strengths of disability, revealing the unique contributions people with conditions like Down Syndrome can make to society. It also aims to inspire change around a chronic lack of access to supported accommodation, which maximizes independence for people with disabilities.

“People with disabilities need to be heard,” Digby Webster said. “I hope the film will show people a different kind of world and also help to create a more open and inclusive community.”

Flying Solo, which first began as a student short film in 2013, was inspired by the filmmaker’s discovery, as an adult, that he himself had a disability. Filmmaker Ehsan was 26 when he got the life-changing diagnosis of Asperger’s Syndrome, a form of autism. A year later, a friend showed him Digby’s artwork, prompting him to get in touch with the artist and make a film about his journey.

After meeting Tom and Tracie, Ehsan expanded the scope of the documentary to include their stories as well, encouraging Tracie and Tom to work together. The result was a series of acting workshops featured throughout the film.

Flying Solo can be watched online on Vimeo On Demand.

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Did you know that, contrary to what many believe, dyslexia and many other learning disabilities do not affect intelligence? Rather, learning disabilities are generally processing disorders which occur in the brain. In the case of dyslexia, this means that reading fluency is compromised.

Not only is dyslexia an invisible disorder, but it also carries a lot of stigma. Children with dyslexia are often treated as if they are “lazy” or “defiant” in school, when they may just be expressing frustration with their difficulty reading in various ways. Thankfully, attitudes about dyslexia are starting to change and many people with dyslexia have achieved amazing things. One such person is Gavin Newsom, the current Governor of California.

Newsom sits down to talk about his experience with dyslexia with Cheryl Jennings.

You can read more about Newsom’s journey with dyslexia here: How I found Strength in My Dyslexia Diagnosis