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

Art is a way to express feelings. While drawing I am happy, often angry, sometimes endlessly sad or even destroyed. Sometimes I feel all of these emotions all at the same time.

My paintings are an entrance. I want the viewer to become a part of the world of a person whose life is influenced by autism.

That brings me straight to a word "autism." If you look at my pictures, then you may make assumption that I am autistic myself. In fact, it is my son who has this particularity. When he was only a few months old, I realized from his rhythmic movements and twitching that something was different about him. I told my husband about it and we watched him for a while. The symptoms were worse on some days and better on others. Over time, however, unbridled tantrums, screaming attacks, and self-injuring behaviors overwhelmed us. Sometimes our son hit his head so hard against the floors and walls that he was green and blue. At night he had screaming attacks and roared so loudly that our neighbors complained to us and knocked against the walls.

At first I was angry and sad, because I knew there was no cure.  I was desperate and completely at the end of my rope. Then I took notes and began to paint and sculpt together with my son. We changed our life in small steps and art as well as reading became an important part of this change. My husband and I practiced accepting him as he is, with all his edges.  Our painting together spurred me to cope with all my emotions. My son can not bear it when I cry, scream or laugh loudly. So art is the best way to explore all the feelings I have.

My husband and I practiced accepting our son as he is, with all his edges.

An "autist" does not differ externally from a "normal" person. He stands out only because of his behavior. In the past, I was easily annoyed by the looks of other parents, when they observed my son's symptomatic behavior. Today I am more relaxed. This is exactly what I try to show in my pictures. I don't shy away from showing the pain and the anger that I sometimes feel when my child is violently spinning and can not be calmed down. I practice with him every day and we do rituals that give him security. Sometimes I struggle to cope with this pressure. My paintings help me. I publish my works on the internet to reach people all over the world who may be affected by similar issues or in a similar situation. My paintings are also for those who have never before had experience with an autistic person. I'm convinced that you will find yourself in my art.

Medical research learns more about autism every day. Therapies are an important step, but above all I've found that the cohesion of the family is what helps the most. Without my husband, I might have failed in the experience of raising a child with autism. Without my painting, I would have died emotionally.

I think it's important to find a balance. Many parents of autistic children forget about themselves and spend all their time worrying about their children. For them I hope that, despite all the challenges, they can remember to take care of themselves too. Most of all, I hope that others remember that they are not alone.

You can contact or follow Desi's work at @eerised_art.

As a child, I was told that I was prone to seizures, but I never thought I would experience them as part of my day to day life.  Everything changed, however, the first day of orientation during my freshman year at Wheaton College. 

 I spent the day like everyone else - moving into my dorm room, unpacking, saying goodbye to my mom and saying hello to the next chapter of my college life.  

And then it happened.  I was out with some new friends, eating pizza, when a piece got stuck in my throat.  Seconds later, my right arm lost sensation.  I started to lose consciousness.  I screamed for help.  I thought I was dying. 

 I was told my seizure lasted for a few minutes; I fell out of my chair and my body shook uncontrollably on the floor.  EMS came immediately and rushed me to the hospital.  

From that moment on, my life shifted. Suddenly it revolved around regular visits to doctors and  hospitals, as well as frequent testing (MRIs and EEGs). I also had to try out different seizure medications to find the one that was the best fit for me.

 In my college years, if anyone mentioned the word “epilepsy” or the word “seizure” I couldn’t tolerate it.  I worried about my future.  Would I graduate college?  Would I get a job?  Would I have friends? 

Around this point in my journey, I met Dr. Devinsky from Finding A Cure for Epilepsy and Seizures (FACES).  I have vivid memories of how I felt during my first appointment.  I don’t remember much of what he said when we first met, but I definitely remember that I was crying hysterically. Dr. Devinsky has played an important role in my journey. Over time, he found a medication to adequately control my seizures.  I am grateful beyond words.

 I have been seizure free for six years. This was a critical step forward in my journey, and it presented me with the next important transition in my life with epilepsy.I needed to decide how I wanted to live.  Was I going to live live with fear and or live with courage? Was I going to tolerate the fear of never following my dreams? Could I live with my  fear that my life would be crushed by my condition? Or, would I find  the courage to persevere? Would I find the courage to push forward?

I chose to live with courage.

I refer to this choice as “my acceptance.”  For me, it’s about finding a way to cope and live with the condition - for what it is - while living my life as fully as possible.  

Acceptance and life experience led to four big shifts in my outlook, and my life: 

BEFORE, I thought: People would not accept me because of my epilepsy; I worried they would doubt my abilities because of my condition. NOW, I can see that people recognize how capable I am - based on my performance, rather than my epilepsy. 

BEFORE: I could not tolerate epilepsy.NOW, I am comfortable with my epilepsy, and I can talk about it openly.

BEFORE, I thought:  I could never drive or socialize freely.NOW, I have my license and drive myself to and from social events with friends. 

BEFORE, I thought: I was at the mercy of my disorder, loaded with anxiety and fear. NOW, I am on the right medication and have educated myself about my condition. My choices make me a healthy and functioning person. 

I’ve come a long way…

As a girl, I didn’t understand the word.  

As a young adult, I couldn't handle hearing the word.

Now, as a woman, I can talk about my condition and say: epilepsy is a part of me.

My name is Jane and I was born in Chicago. Soon after my birth, doctors realized I had cerebral palsy.  My CP resulted in physical and cognitive deficits. I have right arm weakness which prohibits me from doing two-handed tasks. My attention deficits, slower processing speed, and problem-solving skills affect my academic and vocational performance if accommodations are not granted. 

For these reasons, the Americans With Disabilities Act (ADA) has played a crucial role in my education. Because of the ADA, I was able to graduate from high school, college, and graduate school. Having my CP-related deficits did not make excelling easy. I had to work twice as hard as the typical student without a learning disability and I had to be pretty resourceful to get around my one-handedness in school and graduate training.  

The ADA insured that reasonable accommodations would be made during my entire schooling. As I write, you will see what is meant by “reasonable accommodations.” For me, it began when I began experiencing academic difficulties in fourth grade. After receiving a neuropsychological evaluation that revealed my deficits, I started receiving accommodations. The accommodations included receiving extended time on exams and projects, getting the help of a peer note-taker, and getting access to class material prior to the start of each semester. I needed extended time because my processing of information was slow, a peer note-taker because I was a slow writer, and access to class material would allow me to study in the summer so I would not lag behind the class because of my slow reading.  The accommodations leveled the playing field for me so that I could demonstrate my intelligence and not be hindered by slow processing and reading.  

As I continued my education, my accommodations changed as the program demands changed.  When I entered graduate school to get my masters in Psychology, I needed accommodations that would serve me both in class and in clinic practicums. In class, I continued to receive extended time for exams and a peer note-taker. For clinic practicums, I now required audio recording privileges to take home after therapy sessions. Students in my program were generally not permitted to take home audio recordings of their patient sessions.  The Office of Students with Disabilities (which is responsible for ADA implementation in my program) arranged for special permission for me to take home the recordings of my patients so I could fill in the gaps of my therapy notes that occurred because of my slower processing speed and working memory deficits. Physically, I had to learn compensatory strategies to manipulate testing materials. An occupational therapist taught me ways to maneuver materials using one hand. She taught me to use therapy “sticky mats” to keep things in place and ways to grab materials in a seamless manner during sessions with clients. The occupational therapist also suggested using a suitcase with wheels to carry all my books and materials to the clinic. Again, the faculty recognized by unusual changes in procedures as “reasonable accommodations” since they were protections offered by the ADA. 

The ADA applies to all individuals with disabilities in all levels of education and employment. According to the United States Department of Justice Civil Rights Division on the ADA:‍

“This law is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 -- the ADA is an ‘equal opportunity’ law for people with disabilities.”‍

The faculty members in my program were unaware of how the ADA applied to students in graduate school. Most assumed that the ADA only applies to students in secondary undergraduate programs. Their incorrect understanding of the law and reluctance to understand my eligibility for accommodations in graduate school prompted me to seek the advice of legal council. With the help of an attorney advocating for my rights, the faculty began to comply and grant my accommodations. The main reason colleges have a center for students with disabilities is because of the ADA for students. Unfortunately, in my case, my school’s Center for Students with Disabilities was unable to be helpful. Thankfully, the law is there to protect people in my position. 

I am now working at the Children’s Hospital of Philadelphia. I continue to use the same accommodations that I used in graduate school in my work today.

Going to the prom is often a rite of passage for teenagers, and yet many young people with differences don't get to go to prom because their schools or support programs don't sponsor prom events. That's where the Tim Tebow Foundation comes in. Every year the Foundation hosts "Night to Shine" events all over the country and world, where people over the age of 14 with differences can come to get their hair and make up done, get their shoes shined, ride in a limo, dance the night away, and be crowned King or Queen of the Prom. It's a very special program and this year it takes place on February 7th.

You can check out highlights from last year's event in the video below, and we'll be updating this post as we get highlights from this year's event in the coming days. Given the popularity of last year's events, which drew 100,000 people, this year's events are likely to draw 115,000 guests with disabilities and 215,000 volunteers.

Looking to find an event near you? Check out this year's event locations here.