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אוטיסטית גאה הקיץ הזה היה תחילתה של התגלות, אפשר אפילו לומר שזו היתה תחילתה של מהפכה. לא חשבתי שקבלת האבחנה שלי עם אוטיזם תהפוך אותי למאושרת כל כך ותיתן לי משמעות גדולה יותר לחיים, אבל זה קרה. פוטרתי ממספר מקומות עבודה והרגשתי מובסת לחלוטין. העולם שלי, כפי שהכרתי אותו, התמוטט סביבי. אנשים שהחשבתי כמעבר לקולגות נידו אותי לגמרי. הייתי עצובה, מדוכאת וההערכה העצמית שלי צנחה. רגישותי הקבועה לאור וההרגשה האיומה שנלוותה לה הפריעה לחיי היומיום שלי. השעות שביליתי במחקר והרופאים שראו אותי לא סיפקו לי תשובות. אבחנת האוטיזם שלי כן. כיום אני פעילה למען אוטיזם. "פגשתי" כמה אנשים נפלאים ומעוררי השראה עם אותם רעיונות כמו שלי. סוף סוף מצאתי היכן להשתלב. אני כותבת, יוצרת סרטונים, עושה אמנות צבעונית להפליא ומאוד פעילה במדיה החברתית. זה מצחיק איך דבר המונע על ידי אנרגיה שלילית שכזו (לאבד את העבודה שלי) יכול להפוך לאנרגיה חיובית (אקטיביזם). אני מאמינה שחיי כאישה אוטיסטית צריכים להיות משותפים. צילמתי קטעי וידאו נלהבים ואני תמיד לומדת ורוצה לחלוק את הידע שלי. Proudly Autistic This summer was the beginning of a revelation, you could even say it was the beginning of a revolution. I didn't think receiving my diagnosis of Autism would make me so happy and give me a larger purpose in life, but it has. I had multiple employment mishaps, and felt entirely defeated. My world, as I knew it, came crashing down around me. People I considered to be more-than-work-acquaintances completely ostracized me. I was sad, depressed and my self worth plummeted. With my constant light sensitivity and the horrible way it made me feel, my day-to-day life was interrupted by this constant sensory overload. The hours of research I did and the doctors I saw didn't provide me any answers. My Autism diagnosis did. Now, I advocate. I am an Activist for Autism rights. I have 'met' some wonderful and incredibly inspirational people with the same ideas as me. I finally found where I fit in. I write. I create videos. I make incredibly colourful art and I am very active on social media. It's funny how something that is powered by such negative energy (losing my job) can be transformed in to positive energy (activism). I believe my life as an Autistic Woman should be shared. I have made passionate videos and I am always learning. I always want to share my knowledge.

Ever Grey the Person This January I had my sixth child, Ever Grey. As soon as the doctors handed her to me I knew something was different about her. Her eye looked like it was bulging and half of her face was dark red. The nurses assured me that it was probably just bruising but ran to find a doctor just to be safe. I wasn’t at all prepared for what the doctor was about to tell me. Ever was born with a unilateral port-wine stain covering half of her face. A port-wine stain is a type of capillary malformation, similar to a birthmark; however, because it’s vascular it can run deeper than just the skin. Most of the time a port-wine stain isn't a big deal but because of the location and size she would need monthly laser treatments starting right away because it can harden and cause deformation. Also, because of the location, there’s a high likelihood that the malformation would be on her brain which causes a a rare disorder called Sturge-Weber Syndrome. Children with Sturge-Weber can develop glaucoma, seizures, learning disabilities, paralysis, physical deformities, and a host of other issues. I cried for the first week after bringing her home from the hospital. Not because of the way she looked, she was absolutely beautiful, but because I was terrified of what the future held for her. Luckily, she had a great team of specialists that immediately put my mind at ease. They reminded me to enjoy my time with her because nobody can predict the future but I could never get this time back. They also prepared me for the fact that because Ever looks different we may have to deal with unwanted attention when we started taking her out, especially after treatments because it causes bruising and swelling. Our First Outing with Ever Grey The first time we took Ever out to a restaurant she slept in the carseat the whole time because she’s an amazing baby who rarely cries unless she needs something. As we were getting up to leave, the waitress came over and peeked in at her. She looked back at me with a frown and said, “What’s wrong with her face?” I don’t think she meant it to be mean, but I was really taken aback. I wasn’t prepared for the fact that strangers would feel comfortable asking me questions. My knee jerk reaction was to immediately put her blanket over the seat so nobody else could see her but after some thought I put it back down. I realized that wouldn’t be protecting her as much as it would be protecting myself. For the rest of her life she’s going to have to endure people looking at her. There will always be children asking questions and adults making comments. There may even be times when someone intentionally uses the fact that she looks different to make her feel bad about herself. Those are things that I won’t be able to protect her from. The only thing that I can do is raise her to be strong and to understand that being different doesn’t make her any less beautiful, intelligent, funny, or accomplished. I started looking for things that would empower her right away. Things that conveyed the message that we know, and eventually she will know, that she’s not the same as most other people and that we are just fine with that. I wanted something to show that we are proud of her differences and that not being the same as everyone else isn’t sad or bad but makes her special and unique. Ever Grey the Company Unfortunately, I could find very little to represent her which gave me an idea. I would create something just for her that would show the world how proud we are. That’s where my first idea of a polar bear with the port-wine stain onesie came from. I realized that if I feel this way about Ever at such a young age, there must be other children and parents who feel the same way so I started making more shirts to represent more children. Children who wanted to embrace their differences and let people know that they realize they’re unique and that they are proud of who they are. It was important for me to try to represent as many children as possible but also to add designs that were motivational and inspirational. Clothes that helped reiterate how important it is to embrace our differences and how special these children are. Ever & Friends I now have a collection of characters, Ever & Friends, who each represent a child with a different disability. I have several more characters coming within the next few weeks and plan on continuing to grow the line. I also have a Cute Tees collection that feature positive messages and fun sayings. I also decided that a portion of whatever profit I make, if any, would go to the Sturge-Weber foundation. We may not know if Ever has Sturge-Weber for a while but the people who I have met that have it or are raising children who were diagnosed are some of the nicest most caring people I’ve had the pleasure of meeting. Right now every piece is made to order by me. I plan to add more to the collection in the near future and I sincerely hope that it helps show all children how special and important they really are. www.evergreydesigns.com

managing a disability When it comes to managing a disability, such as incontinence, whether you are adjusting to a new medical condition for yourself or acting as a caregiver, there are a lot of fresh challenges to face. The patient could be your child, a parent, spouse, or someone else you care deeply for and the fear of all the new unknowns can add a high level of stress. For many, when caring for loved ones especially, there are a million questions that you might not have the answers to. However, at the end of the day you don’t want to live for someone who contributes to a world that wants you to suffer. That’s something Aeroflow recognizes and that is why they cannot be grouped with average DMEs (Durable Medical Equipment) providers. Instead of simply providing prescribed items for a patient’s treatment they act as a active resource to help answer all of your questions to help you find the fit for your loved one, so they can remain comfortable, clean, and mobile. A Look At Incontinence To put it simply, incontinence is the inability to control urination or defecation, or the involuntary act of voiding. It’s most commonly related to urinary issues and affects people of all ages. There is no need to worry, incontinence is completely normal and actually quite common. Generally incontinence caused by a larger condition, such as a developmental delay, urinary tract infections, functional impairments such as arthritis, overactive bladder, and more. Incontinence has the potential to create a lot of embarrassing situations. A child with pediatric incontinence may not feel comfortable at a sleepover for the fear of having an accident or an elderly woman may not feel able to attend a family reunion. A spouse caring for their husband may wonder how a long car trip or all day activity would be possible without having bathrooms frequently available. Aeroflow seeks to put those worries at ease by providing a broad range of the most advanced incontinence supplies to make active lifestyles possible without accidents and anxiety. Incontinence Supplies For children and older adults there are products like ultra absorbent diapers and bed pads or chux to protect surfaces from urine. These items also make it possible to go for longer durations if a bathroom isn’t nearby. There are also a number of sanitary catheters available to suit the needs of incontinent adults. Curved tipped catheters that are easier to insert for those with enlarged prostates are available, as well as external condom catheters, and a variety of bladder bags and accessories. When it comes to sanitation Aeroflow also provides changing gloves and wipes to ensure that both the caregiver and the patient remain sanitary and comfortable. It is always best to be prepared for a quick clean up. Contact an Aeroflow support expert to discuss which catheter or incontinence supplies would best suit your needs. You may even qualify for free samples to try before making an informed final decision. Receiving Incontinence Supplies For children and adults incontinence may be a source of humiliation. No one wants to stand in the diaper aisle of a store with a photo of what they need clearly displayed on the packaging for the world to see. That is why Aeroflow will discreetly ship the supplies you need to your doorstep on a regular basis. The packaging doesn’t display what is inside, so no one will no your loved one’s tiny secret. Also, when you’re in a caregiver role or suffering from a condition you may not have time for overwhelming tasks like contacting your doctor or insurance company for these supplies. Aeroflow will take this task off your plate by making all the calls for you. Simply spend a moment filling out a form to see if you qualify for supplies through insurance, then Aeroflow will handle the rest. We will make multiple phone calls and sit through all of the long hold times to make sure the treatment items necessary to improve your loved one’s quality of life are sent directly to your home. This allows you to have more free time to focus on the bigger picture, caring for your family. Incontinence is major adjustment for every member involved, not just the person afflicted, but it doesn’t have to cause a radical life change. Visit AeroflowUrology.com/ for more information.

Growing up with polio I am going to explain my life struggles and show you should never lose hope due to any reason of your life. When I was 5 months old, I suffered polio disease by injection. My parents tried to help me recover, but success was difficult. As time passed, I grew up and started to attend school. I was average in my studies, but I tried hard. When I completed my secondary exam, I was admitted to Vishakhapatnam Hospital for an operation on both of my legs. At that time, I suffered very much in school but my friends were very supportive. I am very thankful to have them. My parents were also very supportive and always encouraged me. After my operations I felt very weak, but I managed myself during that time. I didn’t want to study because my classes were on the 3rd and 4th floor. I studied in North Gujarat Palanpur School. They never agreed to run classes on the ground floor, so I used tricycle. Working with Diamonds In 1996, I started working at my cousin’s office. I traveled to the office with a four wheeler scooter. After two years they started giving me a salary of 1,000 Rupees per month. After five years, my salary increased to 5,000 rupees, but I was not satisfied with my job. At that time my father had a heart attack. Since I’m the oldest in my family, all of the responsibilities were put on me. We had no cash, but my father’s goodwill was well respected in the diamond market. I left my job and started polish diamond trading in Palanpur. Finding Love With another polio survivor After some time, the market condition was slowing down so I started traveling by bus one time a week to Ahmadabad to purchase diamonds. It’s one hundred fifty kilometers away from my town. I would walk by my hands, and not use a wheelchair. In between I connected with Ahmadabad (NGO) and met Dipali. She also had polio problem in both legs. She lived 25 km far away from Ahmadabad. My friend and I talked with her parents on the phone. After we decided to visit her home and meet with her. Both of us liked each other and our families met. We got married within six months.Today, we are married with two cute boys. One is 10 years old and the second is 6 years old. Both of our children are normal. I have a plan for buying diamonds from Surat and want to grow my business. After 7 years living in Ahmadabad, we moved to Surat. My firm's name is "Shashwat Gems." Today, I am a buyer and supplier of cut and polished diamonds. I supply diamonds to jewellery manufacturing companies from the last five years without any marketing. My office is on the 2nd floor and I go to the office everyday from 10am to 8pm by my vehicle, which is disabled friendly. I have three people who work for me and they are very supportive. I complete each and every duty and do all my work with honesty. We plan on starting a Web Portal GGDA (Global Group for Differently Abled). Our goal is to encourage and motivate disabled people and their families. In this web portal, useful information will be posted which will be very useful for disabled people. Disability is not a curse After all odds in my life, I never lose hope and continue to live my life with my confidence. Disability is not a curse and disabled people have more strength and power allowing them to do the best by their efforts and hard working. My message to all people who never underestimate the physically disabled person’s ability and always try to help them in many ways because they also have equal rights for living their lives. One more important message to my disabled friends is to not try to hide your internal strength and start believing that God gave you some abilities and you can win. We are all here for some special reason, so stop being a helpless person. Become the architect of your future. Always keep in mind that you have not been handicapped by your condition. I’m physically challenged and differently abled. I’m very thankful to my parents, colleagues and friends who always encouraged and supported me on the way of my life.

הדיאגנוזה שלי: אפזיה (פגיעה ביכולת לשונית כתוצאה מפגיעה מוחית) סיימתי תואר ראשון בביולוגיה באוניברסיטת טוסון במרילנד. כשסיימתי בשנת 1998, הייתי בדרך להמשיך בקריירה ובחיים שאני אוהב. בשנים שלאחר מכן, רכשתי מיומנויות של טכנאי חירום רפואי. זה איפשר לי לעבוד בתור טכנאי חירום רפואי ופרמדיק בסיטואציות שונות ומרגשות. תפקדתי כפרמדיק טיפול נמרץ, חובש טיסה מוסמך, טכנאי הצלה, כבאות, חומרים מסוכנים, נשק להשמדה המונית ופרמדיק במגן דוד אדום בישראל. החיים היו טובים. בתחילת יוני 2007, בגיל 33, אושפזתי בבית החולים "קולומביה" בניו יורק, לניתוח לתיקון שסתום מיטרלי (MVP) שהתגלה ליד שסתום אבי העורקים בלבי. כמו אנשים רבים שמאושפזים לניתוחים רציניים, אבל לכאורה שגרתיים, חשבתי שאהיה בחוץ תוך זמן קצר. אך זה לא קרה. במהלך הניתוח חוויתי שבץ בצד השמאלי של מוחי שהותיר אותי עם שיתוק בצד ימין, ואפזיה קשה שהלכה להרוס את חיי. My Diagnosis: Aphasia I completed my Bachelor of Science in Biology at Towson University in Maryland. By the time I graduated in 1998, I was well on my way to pursuing a career and a life that I loved. In the years that followed, I garnered credentials as an EMT. This allowed me to work as an emergency medical technician and paramedic in many different and exciting capacities. These included that of a Critical Care Paramedic, a Certified Flight Paramedic, a Rescue Technician, and in the allied roles of firefighter, hazmat (hazardous materials) operations and weapons of mass destruction technician and a paramedic with Magen David Adom in Israel. Life was good. In early June 2007, at 33 years of age, I was admitted to Columbia Hospital, in New York, for surgery on an mitral valve prolapse (MVP) repair that was discovered near the aortic valve in my heart. Like many people who go in the hospital for serious, but seemingly routine, surgeries, I thought I’d be out and recovering in short order. However, that was not to be. During the surgery, I experienced a stroke on the left side of my brain, leaving me with right-sided paralysis, and profound aphasia, which proceeded to wreak havoc with my life. האפזיה תיסכלה ובילבלה אותי נשארתי בבית החולים קולומביה במשך חודשיים ולאחר מכן הועברתי לבית חולים שיקומי בלונג איילנד לחודשיים נוספים של שיקום אינטנסיבי. בתחילת אוקטובר שוחררתי והתחלתי בטיפול בבית (שאני עדיין מקבל ביד וברגל). במהלך שיקום השבץ, קיבלתי טיפולים פיזיים, תעסוקתיים ותקשורתיים "מסורתיים", אך שילבתי גם טיפולים לא מסורתיים שכללו דיקור, עיסוי, טאי צ'י, יוגה, טיפול באילוץ, טיפול במים, משחקי מחשב מיוחדים ותוכנת דיבור. ניסיתי גם להשתמש במכשיר Neuromove (מכשיר לחידוש תנועה לאחר שבץ) בצד ימין שלי. עדיין יש לי בעיות איזון וחולשה בצד ימין של הגוף, אבל זו האפזיה שמתסכלת ומבלבלת אותי יותר מכל. אני יכול להבין מה אנשים אומרים לי ועדיין יכול לקרוא היטב. עם זאת, ממשיכות להיות לי הרבה בעיות דיבור, כתיבה והבעה. זה יכול להיות הרסני עבור כל אדם חברותי, שלא לדבר על חובש מוסמך שצריך לתקשר במדויק וביעילות כדי לבצע את עבודתו. Expressive Aphasia frustrates and confounds me I remained in Columbia Hospital for two months and then was moved to a rehab hospital in the North Shore - Long Island Jewish Health System - for two more months of intensive in-patient rehabilitation. By early October, I was discharged, and began outpatient therapy at home (which I still receive for my arm and leg). During my stroke rehabilitation, I received “traditional” physical, occupational and speech therapies, but I also utilized a rich mix of non-traditional therapies that included acupuncture, massage, tai chi, yoga, constraint therapy, water therapy, computer games and special speech software. I also tried using a Neuromove™ device on my right side. I still have balance problems, and weakness on the right side of my body, but it’s my Expressive Aphasia that frustrates and confounds me more than any of my other post-stroke residuals. I can understand what people are saying to me and I can still read quite well. However, I continue to have a lot of trouble speaking and writing, both of these being reflect problems with expressing myself. This can be devastating for any friendly and outgoing person, let alone a certified paramedic who needs to communicate accurately and effectively to do my job. סובלנות לאפזיה אני מסרב להניח לאפזיה לעמוד בדרכי. אני עדיין עובד ומתנדב בתור חובש, וחשוב יותר, יצאתי למשימה חדשה של "סובלנות לאפזיה", לחנך אחרים על אפזיה וכיצד היא משפיעה על חיי היומיום של ניצולי שבץ. כדי להפוך את המטרה החדשה למציאות, הייתי מעורב בהרבה פרויקטים הקשורים לאפזיה. כמו מספר עצום של פעילויות בחיי טרום השבץ, עשיתי כל כך הרבה דברים מאז השבץ שלי שלא ניתן לכמת. ובכל זאת, הנה כמה מהדברים שאני מחשיב כהישגים הגדולים ביותר שלי: - מאמר שפורסם על המסע שלי לעיתון "ג'ואיש סטנדרט" ב-13 באוגוסט 2010. המאמר הופיע בעמוד הראשי. - החל מנובמבר 2008 ועד היום אני משתתף פעיל באגודת האפזיה הלאומית. - סייעתי למשטרה, כבאים וטכנאי חירום רפואיים בניו יורק, ניו ג'רזי, פנסילבניה, קונטיקט, אוהיו, אילינוי, קליפורניה, ישראל ועוד על ידי השתתפות באימונים ועבודה על יצירת תוכניות ההכשרה שלהם. - מאוגוסט 2009, ומדי שנה עד היום, אני ממלא ​​תפקיד מוביל במועדון הדרמה של מרכז אדלר לאפזיה לפני קהל של 500 איש במיווד, ניו ג'רזי. - שימשתי כיועץ לאפזיה בשני מחזות: 1) מחודש מאי עד יוני 2009, להפקת "שמי הלילה" בניו יורק, ו -2) בספטמבר 2010, להפקה של "כנפיים". aphasia advocacy I refuse to let Aphasia get in my way. I still work and volunteer as a paramedic and, more importantly, I’ve embarked on a new mission of “Aphasia Advocacy,” educating others about Aphasia and how it impacts a stroke survivor’s day-to-day life. To make this new goal a reality, I have been involved in a lot of Aphasia-related projects. Like the myriad of activities in my pre-stroke life, I’ve done so many things since my stroke that it’s impossible to list them all. Still, here are some of the things that I consider to be of my greatest achievements: -An article published about my journey for the Aug 13, 2010, edition of the “Jewish Standard” newspaper. The article, entitled “Got _______? Aphasia: At a Loss or Words,” was the featured cover story. -From Nov 2008 through the present I’ve been an active contributor to the “Aphasia Awareness Training for Emergency Responders Project,” for the National Aphasia Association. -From Nov 2008 through the present I’ve been an active contributor to the “Aphasia Awareness Training for Emergency Responders Project,” for the National Aphasia Association. -Assisted with outreach efforts to police, firefighters and EMTs in NY, NJ, PA, CT, OH, IL, CA, Israel, and more by participating in their training sessions, and working on the creation of a curriculum, and materials, used in their training programs. -In August of 2009 and annually through the present, I have played a lead role in the Adler Aphasia Center’s drama club before an audience of 500 people at the Adler Aphasia Center in Maywood, NJ. -Served as an Aphasia Consultant on two plays: 1) From May through June, 2009, for the production of “Night Sky,” in New York City, and 2) In September, 2010, for the production of “Wings.” פרויקטי אפזיה עתידיים אני מתכנן פרויקטים נוספים לעתיד. ראשית, אני רוצה להרחיב את מאמצי המודעות לאפזיה שלי ולהיות "נואם מוטיבציוני" לחולים המאושפזים בבית החולים בלונג איילנד. אני אומר להם שכל דבר אפשרי. פילוסופיה זו עשויה לעזור להסביר כיצד - לאחר שסבלתי משבץ במהלך הליך רפואי לפני כ-9 שנים - הצלחתי לעבור מכיסא גלגלים למקל להליכה ללא עזרה. ואם הזרוע שלי עדיין לא חזרה למצב נורמלי, זה לא כי אני לא מנסה. פעמיים בשבוע אפשר למצוא אותי במרכז אדלר לאפזיה במיווד, עובר מפעילות לפעילות, עם אנרגיות וכיפה. אף על פי שהופעתי בכל אחת מהפקות התיאטרון של המרכז, נראה כי ביססתי את המוניטין שלי שם עם תפקידים ראשיים ב"הכנר" ו"היפה והחיה". המרכז הוא גם המקום שבו אני מגייס כמה מחבריי לספורט. אני לא מבקש מהם לעשות שום דבר שלא עשיתי בעצמי. לאחר השבץ שלי פחדתי ללכת לפארק השעשועים Six Flags, אבל ידעתי שאני צריך ללכת כדי להתגבר על הפחדים שלי. אחרת, לא הייתי יכול לבקש מאחרים לעשות את אותו הדבר. עכשיו, כשאני מזמין את חברי המרכז ללכת, למשל, לצניחה חופשית, אני יכול לספר את הסיפור שלי. עד כה, הבאתי עשרות משתתפים מקומיים. אני רוצה שכולם יגיעו למתוח את הגבולות ולהרחיב את האופקים שלהם לאחר שהפכו לבעלי מוגבלויות. התוכנית שלי שנערכת בחוץ - פעילויות מהליכות בטבע ועד רפטינג - מיועדת לאנשים שחיים עם מגוון רחב של מוגבלויות, כולל אלו שסבלו משבץ, מפגיעות בעמוד השדרה, קטיעה או ליקויי חישה. התוכנית הינה בשיתןף עם ארגונים אחרים, וציוד מותאם זמין בעת ​​הצורך. גדלתי בלובוק שבטקסס, אני רהוט באנגלית ובעברית ונחוש בדעתי לשמר את שתי השפות. כדי לעשות זאת, אני בדרך כלל מבלה בערך 15 שעות ביום בסוג כלשהו של קלינאות תקשורת. Future Aphasia Projects I have even more projects in mind for the future. For one thing, I would like to expand on my Aphasia awareness efforts by becoming a “motivational speaker” to hospitalized patients in the North Shore – Long Island Jewish Hospital system. I tell them anything is possible. That philosophy might help explain how — after suffering a stroke during a medical procedure some 9 years ago — I was able to graduate from wheelchair to cane to unassisted walking. And if my arm is not back to normal yet, it’s not for lack of trying. Twice a week, I can be found at the Adler Aphasia Center in Maywood, going from activity to activity, distinguished both by my energy and kippah. Though I have appeared in each of the center’s theatrical productions, I seem to have cemented my reputation there with a star turn as Tevye in “Fiddler” and The Beast in “Beauty and the Beast”. The center is also where I recruit some of my sports buddies. I don’t ask them to do anything I haven’t done myself. After my stroke I was afraid to go to Six Flags Great Adventure theme park, but knew I had to go to overcome my own fears. Otherwise, I would not be able to ask others to do the same. Now, when I invite members of the center to go, say, skydiving, I can tell my own story. So far, I have enticed dozens of local participants. I want everyone to come stretch your boundaries and expand your horizons after becoming disabled. My outdoor program — which engages in activities from nature walks to white, water rafting — is targeted to people who live with a wide range of disabilities, including those who have had strokes, spinal cord injuries, amputation, or sensory impairments. The program partners with other organizations, and adaptive equipment is available when needed. I was raised in Lubbock, Texas, have been fluent in both English and Hebrew, and I am determined to recapture both languages. To do this, I generally spend about 15 hours a day engaged in some kind of speech therapy. לעולם לא להיכנע לאפזיה אמי נולדה בירושלים. אני עדיין מבין עברית, אבל לא יכול לקרוא, לכתוב או לדבר עכשיו. באשר לאנגלית, אני יכול להבין הכל אבל לא להוציא את המילים החוצה. בביקורות על עבודתי כטכנאי חירום רפואי, ישנו אזכור אחד בלבד לאפזיה - לחלוטין לא מספיק. אני גם עובד בהתנדבות - מסייע לפרמדיקים בשני בתי חולים בניו יורק ובביקור חולי שבץ בבית החולים North Shore ובבית החולים היהודי בלונג איילנד. אנשים שסבלו משבץ עשויים להתפתות לסגת. אני אומר להם לא לוותר. מאחר שאני עדיין מסוגל ליהנות משני ענפי הספורט האהובים עליי, סנובורד ורכיבה על סוסים, אין זה מפתיע כי הייתי רוצה גם להקים ארגון ללא כוונת רווח (בשם "NYC Outdoors Disability"), שיעודד סנובורד, רכיבה על סוסים, טיולים רגליים, רכיבה על אופניים, שייט, צלילה ופעילויות אחרות עבור אנשים עם מוגבלויות. בהתבסס על ה"רקורד" שלי עד כה, אני בטוח שאצליח עם שתי המטרות. Never Give Up With aphasia My mother was born in Jerusalem. I still understand Hebrew, but I can’t read, write, or speak it now. As for English, I can understand everything but I can’t get the words out. A review of my EMT manual shows that aphasia rates only one mention — not nearly enough. I’m also engaged in volunteer work, assisting paramedics at two New York hospitals and visiting stroke patients at North Shore Hospital and Long Island Jewish Hospital. After someone has a stroke, he or she may be tempted to retreat. I tell them not to give up. Since I’m still able to enjoy two of my favorite sports, snowboarding and horseback riding, it’s no surprise that I would also like to start a not-for-profit organization (that I’ve dubbed “NYC Outdoors Disability”). It would promote snowboarding, horseback riding, hiking, hand cycling, sailing, scuba diving and other outdoor activities for people with disabilities. Based on my “track record” so far, it’s a sure bet I’ll succeed with both goals. No Barrier Summit www.NoBarriersUSA.org/summit

the little princess has something a little extra "A Princess Wish" is a story about a girl who longs for a sister by her side. She dreams of a forever friend to play with and enjoy everyday moments with. An endearing story about wishes coming true in unexpected ways. When the little princess finally comes along she has something a little extra. The big sister excitedly runs to meet the new baby and examines her all around, announcing that she is indeed perfect. The moral of the story is that sometimes we dream with expectations, but the outcomes though they may not be what we imagined, can lead to a new journey filled with excitement and happiness. living the beauty of Down syndrome This book was inspired by my precious daughters. It is a true story in every way except for the fairytale part. I am a mother of two lovely little ladies. Our youngest one living the beauty of Down syndrome. This diagnosis is just a little something extra. Sure it makes her different, but we are are different in our own way. I wrote this book for every child, boy or girl, in hopes that every parent will openly and lovingly teach their children to love all those around us, whether the same or different. We all have something in common. We all have a heart, we all have feelings, we all want to be included, loved and respected. Follow our story on Instagram @mommytor_az.

What is wrong with me? Is it only just a little over four years since I held Belle in my tummy? It feels like a lifetime ago. Raising her has been the most challenging thing I have ever had to do. The first year of her life was marred by doctors appointments. "Something is wrong with me" I would cry. "I can hardly walk" I would sob. "It's pelvic girdle pain. You had it during the pregnancy and it takes time to go away." they told me. Months went by. It didn't get better. "Sadly this seems to be your new normal now. You need to accept it. The more you fight against it the more upset you'll become." Accept it? I couldn't leave the house without help. I pushed the buggy constantly even though it exhausted me and caused me pain because it was acting as a walker - helping me to stay upright. I couldn't carry my baby up the stairs. I couldn't lift her into the bath. The heavier she got, I couldn't lift her out of the cot. Breaking point I became very depressed, as you would. I called my Health Visitor one day and told her I didn't think I was cut out for this. "I am not good enough for her. I can't take her out. I can't play with her properly. I can't do anything. She's better off without me." That phone call kinda saved my life. She had me put on antidepressants, came to see me daily, called/ texted me, and reassured me endlessly. But I was still struggling, unable to do daily tasks was wearing down my self esteem. After another difficult day, I went back to the doctor's. "What is making you so unhappy?" he asked. "My legs. I can't walk. I have no independence. And I'm in so much pain." He agreed to send me for a routine x-ray to give me a peace of mind that nothing was wrong. Weeks passed and the day arrived. I laid on the bed for my x-ray. And I waited, and waited, and waited. Eventually they came back in. Vindication at last They told me it wasn't good news. My pelvis is shattered, both hips are broken and have likely been that way since I gave birth - Belle was 10 months old at this point. "I knew it." is all I said. I think everyone expected me to be sad but I felt positively jubilant. All this time, I hadn't been imagining it. There was something wrong. Vindication, at last. So I had surgery. I was pinned and plated, sent for a myriad of scans. "This is fine" I told the Dr's, "but there is more to it than this break. I'm fatigued beyond belief. My muscles are deteriorating, I can't lift my arms to wave anymore as I lack the strength. I'm losing weight. I feel ill every day. I have leg spasms so severe that they throw me out the bed." I was so naïve to all that would come next. One autoimmune disorder. A brittle bones disease. Several vitamin deficiencies. A rare thyroid disorder that means no matter how much I eat, without medication my weight will drop and I will become at risk of heart failure. Oh and my legs? They'd never go back to normal. I still use crutches now and can only walk short distances. Stairs are ridiculously difficult for me. I can't bend over. I certainly can't lift anything. All because the fracture was so old, by the time they tried to fix it it had malformed so it'll never go back to how it was. A few months post surgery, my collarbone snapped. Have you ever tried looking after a toddler with an arm in a sling and using two crutches? Now that was a challenge. More surgery. A plated shoulder. A million jokes about me being the bionic woman, although it was becoming less funny to me by the day. Finding my way as a single disabled mum Two months later, my relationship broke down. It had been coming a long time and we both knew it was the right thing. My health visitor again came into her own. "You can't stay here in this house. You need somewhere without stairs if you're gonna be a single disabled parent. Give me a few weeks and I'll get you somewhere. I promise. And you need a new bed - one with a remote so you can get up easily for the night feeds. I'll sort it for you. Oh and a bath board too. We'll figure out a safe way to do baths." Oh god. A single disabled parent. Those words rang in my head. I started to panic. How was I going to do this? I can't lift her up. I struggle to put her in and out of the cot. I can't do this. Shortly after, I got a phone call. We'd been offered a ground floor maisonette. Then the disability equipment team arrived with a bed and a bath board and everything else I could ever need. My health visitor spent the day with us helping me find safe ways to do everything. We made Belle's cot into a cot bed to make it safer. And slowly but steadily we found our way. My confidence grew and grew. I will never forget the first time I went to the shops by myself post separation. I walked round the whole time in a daze. "I'm doing it" I thought. "Nobody is helping me. I'M doing it." There's a photo I keep on my fireplace of one year old Belle in a swing. It's the first time I ever took her out by myself. I lifted her into the swing and high fived her and took her a picture. "YES. I got you in the swing. I AM SO PROUD OF MUMMY." Gaining confidence. So slowly, but surely, we found ways around things. I will never be able to run around the park, but I will chase with her while zooming around in my wheelchair. I won't be able to go ice skating, but you can bet I'll be the one at the sidelines cheering her on with all my might. Three years of disabled single parenting have taught me one main thing, and that is resilience. There is a way around most things. I am so much stronger than I give myself credit for. Every day has it's challenges, but I would take all the challenges in the world, because they mean I get to be her mum - and what a wonderful honour that is.

"מריה ופיט": הזוכה בתחרות Film Your Story בשיתוף AdaptLab Productions, yoocan ופסטיבל הסרטים בניו יורק העבודה האחרונה שלי היא על סרט קצר בשם "מריה ופיט". לא ציפיתי לשפר את כישוריי כמספר סיפורים. מאז התחלתי לעבוד על הסרט הקצר, למדתי איך לעשות עבודה טובה יותר בלספר סיפור חזק. למדתי גם איך לעבוד כחבר טוב יותר בצוות ההפקה שלי. העורך, אנדרו ג'ונסון, תיאם אותי את הצילומים על ידי כתיבת השוטים ומה שקורה בהם. למדתי גם לעזור לעורך בעריכות עם החלטות באילו קטעים וראיונות להשתמש כדי לספר סיפור חזק ורב-השפעה. צילמנו בהרטפורד, קונטיקט וכן מירוץ אופני יד עם מריה ופיט בניו ג'רזי. כמו כן, הוספנו נאום של מריה בכנסייה היוונית האורתודוקסית. צילמנו גם את ארוחת הערב של אחותה שם היא ראיינה את אחיה (בובי), אחותה (זואי) ואמא של פיט (איירין), עם עוזר ההפקה (ברן בטר) והכותב שלנו (ליי סילבר) שתימלל את הראיונות. עשינו גם הוקרת תודה למריה ופיט על כל העבודה הטובה שלהם. הסרט שלנו הוצג בפסטיבל הסרטים 2018 Reelabilities ב-JCC בהארלם ב-10 במרץ 2018 עם סרטים קצרים אחרים. אני אמשיך בצמיחה שלי כחבר בצוות ההפקה וכצלם. Maria & Pete: Winners of "Film Your Story" Competition in Partnership with AdaptLabs Productions, yoocan & Reelabilities Film Festival: New York My most recent work is on a short film called Maria & Pete. I didn't expect to improve my skills as a storyteller. However, since I started working on this short film, I have learned how to do a better job with storyboarding and and telling a strong enough story. The editor Andrew Johnson coordinated on shooting with me by writing down the type of shots I was shooting and what was happening in those shots. I also learned how to help the editor with the edits by helping him decide what footage and interviews to use to tell a strong and influential story. We shot on location starting in Hartford, Connecticut featuring a hand cycle race with the subjects Maria and Pete, New Jersey featuring a speech by the subject Maria at her Greek Orthodox church. As well her sister's dinner interviewing her brother Bobby, her sister Zoey, and Pete's mom Irene with our production assistant Bren Bater and our writer Leigh Silver who transcribed the interviews. We also had a stand out for Maria & Pete at all good work. Our film will be shown at 2018's ReelAbilities film Festival on March 10th at the JCC in Harlem with other shorts. I will continue in my growth a member of the production team as well as the cinematographer.

Pants Up Easy: A product designed as an accessory for those confined to a wheelchair Pants Up Easy was invented by Douglas Pearson, for his close friend Paul Degroot, a wheelchair user with paraplegia as a result of a spinal cord injury. Douglas noticed that Paul spent long periods of time in the restroom. When asked why, Paul explained the difficulty and problems associated with dressing before and after using the toilet. Once on the toilet it was extremely painful and problematic to simply pull his pants up and down. Paul would wiggle back and forth, tugging and pulling on his pants to get them down and then repeat the process to pull them back up again. Pants Up Easy Has changed the lives of Many Paul had the same struggle while dressing in his wheelchair, usually needing to lay on his bed to pull his pants on. Douglas immediately began to design a product to assist his paralyzed friend to be able to independently pull his pants up and down. The results of that effort are the 3 individual products in the Pants Up Easy line Wall Mount, which is permanently installed to any wall Toilet Model. It’s freestanding and placed behind any toilet (no installation required). The wheelchair model is freestanding and assists in the dressing process while in the wheelchair. These products have truly changed the lives and the many others that use them on a daily basis; Spinal cord injury victims, police injured in the line of duty, individuals with a loss of mobility, firemen injured in the line of duty, individuals with the loss of the use of their legs, elderly with limited mobility, wounded veterans, paraplegics, those afflicted with debilitating disease like MLS.

Film Editor: Andrew Johnson As an editor, working on ‘Maria and Pete’ has created a challenge and on the journey took me out of my comfort zone. I have cataloged material from Oren Sauerhaft (cinematographer), coordinated with Oren on the editing process, and storyboard with Oren on mapping out the material we already had. ReelAbilities Film Festival Leigh Silver (writer) helped us transcribe the material we needed in order to narrow down the material for our storyboard. Bren Bater helped assist us in the production in making it run much smoother. We went to locations such as Hartford, Connecticut and New Jersey to feature an inclusive Sunday church and a Pancake Factory dinner. We featured our film to a focus group at the Freedom Tower. We were the standout film and everyone was impressed by our work. We presented our film at the ReelAbilities JCC Harlem along with other shorts on March 10th, 2018. We will continue our other projects to work on.

The Diagnosis: Cerebral Palsy When you first become a parent, you look for all those first milestones. First smile, first word, first steps. This is what we have been taught to do. We wait patiently, eagerly and excitedly for all those moments to arrive. But sometimes Life has another plan, you have a child and few months later you discover that your little nugget has Brain damage. You hear the words coming out of the doctor’s mouth but somehow your own body shuts down. It feels like someone has thrown you down a very high cliff and wants you to fly. You want to fly, but no one has taught you how, you have not seen anybody do it. You fall, and fall, and burn, and then you Rise like a Phoenix. My daughter has Cerebral Palsy. Doctors predicted she might walk with aids, or not walk at all. Today she walks without aid, jumps and does whatever she is told she couldn’t. When you become a parent to special needs child you become this fierce and powerful energy that your child needs you to be. You fight for services, push for appointments, learn all the jargons, and make sure there isn’t any stone that’s left unturned. The Acceptance I was devastated. I had to learn a lot and very fast. I had to come out of darkness and be there for her. I had very little time to grieve the loss. When others cheered their kids for walking, I was cheering because she was trying to walk, and when others were sleeping at night, I was watching my daughter so she wouldn’t have a seizure alone, even my breaks were filled with constant search on internet on ways to help my daughter. Admits all this, I forgot to take care of me. I broke down like a machine that was overused. I couldn’t get out of bed. Reality hit me hard that day. My daughter still needed me, but I needed myself more. I had to prioritize. I had to put myself first however selfish that seemed to me. The guilt was eating me alive. I made a choice to give myself 2 hrs a day where I am not talking about her, reading about her conditions, searching internet for ways to help her. I suddenly realized I had very little left in life that wasn’t about my daughter and her condition. And Finally Moving On I started going out more, making new friends, talking to people. It felt good, like I too have a life. I started a blog to help other parents in my situation and that felt liberating. Today I receive messages from moms all over the world, in similar situations like I was few years ago and it feels good to be there for them the way I needed someone. Today we are happy and have adapted in this Imperfectly Perfect Life of ours. We laugh, play, giggle all day and are thankful for this life every day.

הזוכה בתחרות Film Your Story ל-2018: "מריה ופיט" בשנה האחרונה התפתחתי כצלם קולנוע בעודי עובד על סרט קצר בשם "מריה ופיט". כצלם הסרט פיתחתי מאוד את כישוריי. עם זאת, לא ציפיתי לשפר את כישוריי כמספר סיפורים. מאז התחלתי לעבוד על הסרט הקצר, למדתי איך לעשות עבודה טובה יותר בלספר סיפור חזק. למדתי גם איך לעבוד כחבר טוב יותר בצוות ההפקה שלי. העורך, אנדרו ג'ונסון, תיאם אותי את הצילומים על ידי כתיבת השוטים ומה שקורה בהם. למדתי גם לעזור לעורך בעריכות עם החלטות באילו קטעים וראיונות להשתמש כדי לספר סיפור חזק ורב-השפעה. צילמנו בהרטפורד, קונטיקט וכן מירוץ אופני יד עם מריה ופיט בניו ג'רזי. כמו כן, הוספנו נאום של מריה בכנסייה היוונית האורתודוקסית. צילמנו גם את ארוחת הערב של אחותה שם היא ראיינה את אחיה (בובי), אחותה (זואי) ואמא של פיט (איירין), עם עוזר ההפקה (ברן בטר) והכותב שלנו (ליי סילבר) שתימלל את הראיונות. עשינו גם הוקרת תודה למריה ופיט על כל העבודה הטובה שלהם. הסרט שלנו הוצג בפסטיבל הסרטים 2018 Reelabilities ב-JCC בהארלם ב-10 במרץ 2018 עם סרטים קצרים אחרים. אני אמשיך בצמיחה שלי כחבר בצוות ההפקה וכצלם. Reelabilities 2018 "Film Your Story" Winners: Maria & Pete Over the past year, I have grown as a cinematographer while working on a short film called Maria & Pete. As the cinematographer, I learned to hone more of my skills. However, I didn't expect to improve my skills as a storyteller. Since I started working on the short film I learned how to do a better job in telling a strong enough story. l also learned how to work as a better team member with my production team. The editor, Andrew Johnson, coordinated on shooting with me by writing down the type of shots and what was happening in those shots. I also learned how to help the editor with the edits by helping him decide what footage and interviews to use to tell a strong and influential story. We shot on location starting in Hartford, Connecticut featuring a handcycle race with the subjects, Maria & Pete in New Jersey. We also featured a speech given by the subject (Maria) at her Greek Orthodox Church. We also shot her sister's dinner where she interviewed her brother (Bobby), sister (Zoey), and Pete's mom (Irene) with our production assistant (Bren Bater) and our writer (Leigh Silver) who transcribed the interviews. We also had a stand out for Maria & Pete for all their good work. Our film was shown at the 2018 Reelabilities Film Festival at the JCC in Harlem on March 10th, 2018 with other shorts. I will continue in my growth as a member of the production team as well as the cinematographer.