Remember when...

Hi I am Stephanie Rodriguez will be 45 in May and I am here to share my story...

I'm on the Autism Spectrum and have Dyslexia, ADD & PTSD(Post Traumatic Stress Disorder). I was officially confirmed, 2 weeks ago. I always knew I struggled to pay attention, I "f**k off to Ninaville" after someone had spoken for more than about 10 seconds, even if I'm interested. I didn't know that I was the different one, despite being told I'm odd and weird, my entire life, including by bosses. I just knew I didn't understand why others are so successful at socialising, relationships, tidying, knowing what to say, organising, jobs, being assertive and not getting picked on.

I was assaulted by a patient in December 2010, resulting in a crappy lower back.

In June 2011 I was in a car crash that has left me with constant migraines and a crappy upper. back and neck.Rx plan for my back, I was initially sent to physiotherapy, exercise lady (hydrotherapy then a gym program), masseuse. Then those stopped and, after a year, I was sent to a chiropractor.

Then I was informed I'd be terminated and paid out (the payout didn't cover the $ I'd already lost.Since this, no one will employ me. When I'm in job interviews, when they get to the sheet, where you have to declare injuries, they change the interview and make it harder, then tell me I didn't have enough experience, despite people I know, whom I mentored, being employed for the same job.Because I can't exercise, like before I hurt my back, I'm very fat. I hate bumping into people, from the hospital where I worked, because I dread bring seen this size and being asked what I'm doing for work now. I now drive three suburbs away, in case I bump into someone I used to know.I do try to hide my back injury. I can't explain it, but I'm embarrassed and I hate having to explain it to people. Things have been hard to a point that I am super angry and upset this happened to me I hate having these disabilities nothing but difficult.

Thinking out Loud

    Hi so I am Annie Forester!  I  have ADHD (attention deficit hyper activity disorder) is a psychiatric disorder of neurodevelopment type where there is excessive activity in the brain. Autism is a neuro development disorder which could have syptoms such as impaired social interaction,restricted and repetitive behaviors.  Dysgraphia is a writing disorder associated with impaired handwriting, orthographic coding  and finger sequencing. Depression is a mood disorder,a state of low mood and aversion to activity. Unilateral hearing loss also known as single sided deafness is a type of hearing impairment where there is a normal hearing in one ear and impairment in the other. 

I was diagnosed with unilateral hearing loss at two or three years old.I was diagnosed with everything else at four or five years old.I take ADHD medications and anti-depressents.

I'm 21 and I'm a photography student  at a community college and I also do advocate work for free .I was hospitalized once for self harm for two hours in January I'm currently unemployed and get SSI each month.So I only get four hundred dollars a month from SSI so I supplement that by selling prescription drugs other wise there'd be days where I wouldn't be able to get lunch or a pack of cigrettes every few weeks.

It is not something that I really do not share with a lot of people it is just something you tend to notice though it has never been easy for me.

A world of worry

I am Gitty Goldberg and I am 34 years old!!! I have a few disabilities but I am afraid to share but got to put myself out there. So lets start in my 20s I got cycolic vomittng once I start vomitting there is no way to stop vomitting. I went to the hospital many times for testing originally they thought it was a tumor and nothing showed up on any of the tests or scans. They sent someone a social worker to talk to and they found a trigger is stress! Any of the five senses could trigger my vomitting. 

Both the cyclic vomiting and anxiety affected me a lot in high school I was worse cause I would take other peoples worries and problems on myself so I worried and if couldn’t help people I would get sick(cyclic vomiting). On a daily basis I feel disconnected like I can't worry to much or else my cyclic vomiting will act up. I have Nausea medication which I carry around and diazapam for emergancy cyclic.

My Depression leads to Anxiety attacks and that leads to Cyclic Vomiting. When I am depressed or anxious with bad news I can starve myself for days causing cyclic vomiting. I am effected emotionally through bad anxiety or get panick attacks. I take anxiety medication but I have a fear that I will throw up and since people push me to take medication I refuse and am in such fear I throw up anyways . I will wake up from nightmares even if it is not real I will still take anxiety attack I feel it is real.

The only stress or discrimanationis only  labeled by my family because they think it is okay to self-diagnose me and it makes me feel bad because it is not their place. Sometimes I really do have negative  feelings sometimes but instead of help they cause me pain.

Hope you enjoyed my story of my life!!!!

The same but different

Hi my name is Megan Heller, I am thirteen and I have Aspergers,Arthritis and ADHD so lets get into MY story.I was diagnosed approximately two and a half years old went to Yale psychologist center to have her evaluation but she was at 6 months having OT and 1 years old PT,OT AND MOM HAD TO FIGHT FOR SPEECH THERAPY. 

I went to HASC a special ed school from ages 2-3. I help with things needed to be evaluated then a public school for about a year in kindergarten HANC teacher said better know now then later.To find out about my start for anxiety and add diagnoses because I couldn't sit still and had emotional breakdowns. Then I did better after medicated I did so much better and was a very smart kid if I do say so myself and had less emotional outburst increasing her ability to learn.

I was diagnosed at eleven years old with artherites but people thought I had lime disease and was tested and swelled up it felt stiff it was hard for me to walk. When tests showed clear my mother took me to a specialist called a rheumatologist. He had seen it was hereditary through my blood work. My mom and doctors had given me so many antibiotics which hadn’t worked my mom had to carry me out of bed but through the day I felt a little  better.

Emotionally and medically I am Embarrassed because no medication equals fights and major tantrums and medically I need to take medication three times a day and if I don’t have medication then it kinda controls where and when I go places.

Excuse to get out of things once in awhile and upset I can’t do certain things and Kulanu classes are done . My meds or treatment plan is such as lexapro, clonodine and many more.

To answer the question I label myself and outsmarts people and people ADD treat me different like a baby because of it but always was taught nothing can limit me and i am limitless. I was only hospitalized through EEG which is itchy well that is my story.

Hardest part is is inside disability so ots harder when she has tantrums she is seen as a bad kid. She wants to be seen like everyone else with abilities not disabilities thats the hardest of my disability. So world when will our reflection show who I am inside as mulan says in my favorite movie. No person actually believes me until they see the bad way I can act at moments my poor moments. So...I just don't understand the world!

CP=Cool Person

Hi I am Raizel Goldberg I live in Bangor,Maine and am a Jew I am in my mid 20s and I am ready to share my thoughts on my disability Cerebral Palsy which is The part in the brain that controls muscles (cerebellum) doesn't work that well including fine and gross motor skills.... I was born premature and usually most premature babies have a high percentage of being diagnosed with CP. The levels of CP vary with six the highest and one the lowest... BH I'm on level 1 and a half... I wear leg braces up to my knees and use crutches for long distance. I was diagnosed and the Dr's. already knew from birth that something wrong, I was kept in hospital for 4 months under close observation due to medical complications and when I was about a year old, they gave the official diagnosis.This affect me in every day life by,Well, I missed lots of school due to many therapy and Dr. appts... And it definitely takes me longer to get to places. Most tasks take me longer to do than my regular peers. CP can affect different areas as well... I wear hearing aids and had a para throughout my elementary school years. Some people say that it can affect a person learning wise, I have had some issues with academics and needed help with that.

Thus, effects me both medically and emotionally so as I mentioned before, I do wear leg braces and use crutches when needed. I have a wheelchair but I try not to use it only when I really need to. Emotionally I went to many different therapists throughout the years to help me cope with struggles and triumphs. I BH never had a problem socially, it was more like that I had to learn how to cope with reality - that I have a disability and this is the way it's gonna stay. And yeah, I always feel like telling those therapists if they believe in Moshiach! I have a treatment plan which isI still require physical therapy sessions to keep my muscles from getting weak and do follow ups with Dr's once in while.

Discrimination is something that when I was younger, I definitely was labeled and it was very hard. But as I got older, people saw the real me and that my handicap doesn't define who I am! I'm so grateful for my wonderful parents, siblings, relatives and friends for truly helping me out in every possible way and for believing that I could set out to accomplish anything I want to do! Shout out to my close friend for giving me the opportunity to share my thoughts! She's an amazing person and I feel fortunate to have her as a friend! Last but certainly not least, Hashem. To my Father who has given me this challenge but at the same time He gave me so many strengths, resilience to keep on going and an amazing support system! I am grateful for this challenge cuz I really grow from it and it has helped me appreciate all my wonderful blessings!

Humble with a dash of couragous

Hi my name Alexis Silver!! I came from the great city of Fairlawn,New Jersey and yes I AM 18 at the moment and I want to share my story for those who want to know. She was always placed in the lowest tracks up until 8th grade which is when they found out She’s dyslexic and in 6th grade her teacher asked if she had noticed everything looks backwards  and it explained her slow reading. Nobody second guessed it until later so she found when they questioned why some of my letters looked a certain way! It's annoying!

Her ADD,OCD and Social ineptitude came around 5th grade  never able to read people's faces well, doesn’t understand when a comment is inappropriate and too much.Which is a struggle in class when teacher try to hint or push away her comment she would say things and she wouldn’t understand to filter they get mad,bad social cues,asthma since birth it was really bad sometimes she will get panic attacks and anxiety attack which would affect her asthma barely able to breathe. Always had depression and anxiety but not discovered until high school a suicidal period so she see a therapist for that they said if you want medicine to treat all your diagnosis you must see someone,Sinusitis(major sinus infection). There was never a day I didn’t have a sinus infection  and had 3 surgeries they have been monitored.

My Everyday life is I can’t go ANYWHERE without my medications for example if I'm on a plane and Iforgot them I must miss my flight take medicine.I need to  collect my stuff like Aderall cause that is not sold in Israel. Also I am in major pain at times and due to my acid reflux; I will have to go through the day. Anxiety attacks used to be so bad that she used to rock back and forth, pull out my hair, scratch myself,hurt myself. Alexis's mom used to need to grab her hands and sit on top of her until she stopped it was really bad but she hasn’t had one in a few years thank goodness that affected around her friends,she feels like her problems are nothing compared to her friends. 

Insomnia affects her life because she can be staring at the ceiling for three hours no sleep so she will get up, she is able to run on an hour or two of sleep but a couple times her sleep deprivation a few times in high school she dropped and fainted no hospitalization but needed to miss the rest of the day. If I don’t take my acid reflex medication I can not eat all day but if I do not eat it is bad.I have had this since birth.had since baby My doctors say I have acid reflux due to my anxiety that really affected me in 9th grade when I had braces I was  throwing up often and that burned the anamel off of my teeth and needed to get bonded none of my teeth are actually real all of them are fake because there was no protection on my teeth. It’s frustrating! Cause my OCD kicks in on my dental hygiene with fear food in my mouth will rot. 

I take medication such as Adderall,Zolaf APATIHEC,TOPAMAX,ZARATONIN etc. and I see doctor,blood drawn often ,therapy so I can be prescribed and diagnosed with medication .Insomnia caused me to fall a couple times and I sometimes can't fall asleep until a few hours before I wake up thinking to myself will I fall today or not.

Anxiety attacks so bad that mom  said if not stop rocking back and fourth we need to call for help,Oral allergy  not much iron so i take iron pills. I can’t give blood but on the other hand I’m proud of my label normalize it don’t hide it they want to label me its okay you don’t know the struggle really try to surround myself with positives not negatives.

NO WEAKENESSES

Hi my name is Merrideth House you guessed my parents love those shows somtimes I feel that is all knowledge in the medically. I live in Utah and I am 23 and a half years old and my disibility is Nemaline Myopathy. Basically at few days old they noticed something was up and then diagnose this as nemaline myopthy. It took them a little more time to confirm that it was Nemaline myopathy. And they also did muscle biopsy on both of my parents to check on if this was genetic or not.

Nemaline Myopathy is a disability of which weakens muscles in the whole body which has required me with it often comes scholiosis and and droppy chin. One of my first memories associated with Nemaline myothpy is get feeding tube at only one years old because I wasn't able to suck so my parents had to drip feed milk into my mouth instead and even then I was so skinny and it was such a struggle to get me enough nutrition, that by one years old my parents were begging the Drs to give me a feeding tube so that I could gain.

This effects my everyday life by well.... I had to get a trach (tracheotomy) when I was five because I had pneumonia. I was coughing a lot the day before and then that day I slept the whole day and my face was pale and I couldn't wake up. I was past exhausted! My mother told my father to take me to the ER and my father thought we were going to be in the waiting room for awhile because of it being not that serious but, that was not the case. They took my vitals and my pulse was in the 80s very bad and so they rushed me in and probably gave me; nebulizer treatment, I'm guessing I don't remember. But they realized that my right lung was collapsed because of so much mucus in it and basically that's when I started to need a tracheonomy and or a biopsy which is a machine that breathes the air in through the mouth and nose, but I couldn't tolerate the bipap so I got a trach and the ventilator and constant nebulizer treatments because of weak lung muscles not being able to cough it up and it took me more energy to even breathe by myself....

This effects me medically and emotionally on a daily basis because I'm in a wheelchair because I had back surgery when I was eight, to put a rod in my back to stop my spine from curving. I was walking up until then but with poor balance and I needed a helmet and walker in case I fell which was a lot oh and also a few times when I fell I broke my legs because my bones break easily... So of course after the surgery I lost whatever ability I had to walk and I became even more dependent on people which is kinda hard even tho I'm used to it because I like to do things for myself and don't like to be watched by nurses 24/7 and I can't even be by myself because it's not allowed... So ya there are many times when I just wish I could get up and run. Also because I love helping people, it makes me happy and is who I am so the fact that I need so much help from people? It's kinda annoying. Maybe even more than annoying at times..... not really any treatment plan. I have been hospitalized Ya many times for different surgeries and pneumonia and mucus plug once 

My days are different makes me different than all my friends because my brain is normal but my body is not so I just wish I can get married and do a lot of what my friends are doing and it makes me feel stuck many times. I'm a strong person by still, depression has partly affected me because of feeling stuck so many times. And the other part of depression is from family drama having nothing to do with me being handicapped. My friends are my WORLD. Samantha Kamenetsky is my person and basically what keeps me going. We help each other realize our disabilities may make our lives harder but we are still awesome,fun,crazy and strong!

Small headed

                                                  Small headed

My name is Lexi O'Malley aka Sexi Lexi my friends say I am not a big shot not the type to have a big head and I am here to tell my story and teach more about my condition. When I was a few months old my right hand started to shake, my mom said it looked like I had Parkinson’s Disease.  My feet were toed in and I was very stiff.  She said she knew there was something wrong but no one else believed it.  The top doctors at Columbia Children’s Hospital in NC said I was a healthy, alert, age appropriate baby.  That I would outgrow my feet turning in when I started to walk…well that never happened.  At 8 months old we went to a neurologist in Westchester we lived in Rockland County then who said I had a neurological disorder.  He also said I had microcephaly and was high muscle tone.  Most said I had cerebral palsy but he thought it was an umbrella term and wanted to find out exactly what I had.  Every week they took blood and would tell me another terrible disease they thought I had.  Finally when I was a few years old they did an MRI and discovered I had a rare neurological disorder called closed lip schizenchepaly.  It means the clefts in my skull did not close all the way..  They were small and bilateral and they told me I should be alright.  Each doctor told me a different age I would walk, they all said I would but I never did.  They would dangle a carrot in front of my parents with each surgery they suggested.  Muscle transfer with a body cast for months in a reclining wheelchair left me with a hole in my spine. Hip surgery,, leg casts on leg casts off, Botox injections, alcohol blocks but still I never walked. 

I am unable to walk, use my right hand or talk.  All the doctors said I would do everything.  What they were wrong about is microcephaly and low IQ.  They seemed to think I would never be able to learn anything, especially new concepts. I am in college, on the Dean’s List, Honor Society for Psychology and in the 90% for abstract concepts on IQ tests.

I am never sick (knock on wood) and only go to the doctor 1x year for my check up.  I go to prompt therapy for speech and am able to make some words.  I should go back for physical and occupational therapy since I stopped when I graduated from High School.

Emotionally I am happy most of the time.  I am lucky because my mom always believed and fought for me.  I was discriminated against in High School by the administration who thought I would never pass state exams or go to college.  I think they just didn’t want to be bothered figuring out the proper accommodations. Finally in 11^th grade they wanted to to go to a vocational school even though I was only 18 and had until 21 to graduate.  I left that school and all my friends in my senior year to go to a school for the physically disabled.  I got all 90’s and 100’s passed not just 6 state exams for 7 and got 1 wrong on the English regent multiple choice.  I graduated became student of the year for all Nassau County and my old school that threw me out, gave up on me brought we dozens of roses. 

People see me in a wheelchair and look so sad.  They always stare and my mom says “take a picture, it lasts longer”. They don’t talk to me or if they do they talk in a low, slow, baby tone.  Pity and sadness from others is the hardest.  Being non verbal separates me even from my disabled peers.  I worry about my future more than I think the non disabled.  I feel discrimination on a daily basis, whether it be physical obstacles or from people.

My condition has not gotten worse but the predictions the therapists told me when I was young and didn’t believe did come true.  I need constant assistance with most everyday life chores..

I have done what nobody thought possible with Kids of Courage though for example they took me jet skiing . I have Made friends who consistently have my back and I love like family. Thank you KOC and I hope I taught you something throughout my writing.  

Skinny and handy

                                       Skinny and Handy     

                                     

   My name is Yael Freedman!!! I am now eighteen years old.I was diagnosed with anorexia in May time of my freshman year some even feel this all started in eighth grade. Car pal Tunnel syndrome in October time my sophomore year. As everyone does there is a story behind all this chaos let me first explain what these are exactly in case someone doesn't know so Anorexia is the more common one but the definition is a lack of apatite mostly associated with memories in my case bullying. Carpal Tunnel Syndrome which is my wrists the nerves are squished it is very irritating basically. Time to tell my story my first one will be about my...

 Carpal Tunnel Syndrome so here goes nothing one day I was in pain while taking my notes to a point that my family noticed how much pain I felt in my wrist. I was taken to a PA Dr. Weingarden who diagnosed me but to make sure we went to a hand specialist who had given me a brace to wear sure enough I had Carpal  Tunnel Syndrome. Now I can type my notes as convenient as that is it gets me upset, that people say in school "OH MY GOD YOUR SO LUCKY YOU CAN TYPE YOUR NOTES!!!!" but truth is although it was something small and can be controlled;it is still annoying. I treat my hand by heating  it every  morning (it is as weird as it sounds) and a brace to  wear at night so my media nerves   do not condense. The colder it gets outside the more pain Carpal Tunnel Syndrome has  put me through cause my nerves to close up.  

So if you can say who your best friend is who would it be possibly your cat or my Aunts Son Vinny mine was my school psychologist Linda from 9th grade until now my senior year. Every time we spoke the conversation always began the same YAEL NICE TO SEE YOU WHAT DID YOU EAT?!?!?!?! I'd hug her say I am fine, I  ate and I am more of a gum person! She laughed that kind giggle of hers...she had also come on our Shabbaton/ School bonding weekend trip where things were about to get interesting.   On our shabbaton at meals I didn't eat at all not sure if the girls were worried or grossed out or what caused them to tell Linda but...they did. Soon enough Linda came over to me privately put a roll in my face and for the first time she sternly said to me eat this at least your mom will be called. I didn't think she was serious and it maybe to psych me out but OF COURSE the sixteen year old was wrong! My mother was called right after the Shabbaton and Linda told my mom I am not eating which I replied but I'm never hungry but when your the kid not many people will buy that. Linda basically diagnosed me before her colleague of whom was a doctor had declared I was severely and dangerously underweight;and must be treated right away. I refused unless they allowed me to do outpatient work. 


Right after diagnosis Anorexia was given Medical workup (blood pressure, glucose levels etc. I was not allowed to exercise for about a week no biggie there. Then they gave a strict food plan which made it super hard three meals a day two or three snacks felt. Anorexia  over the years has gotten better Thank God but it depends triggers are family,parties.I know how to handle it better!!!There are good things about it though I am ambidextrous and this got me through being so shy about everything to being a very talkative and medically it affected me because My pale skin tends to fluctuate often my weight shifts often up and down. Thank god no hospitals but sometimes I felt labeled self consciously I felt like the messed up uber skinny girl but that feeling disintegrated once my friends came I still answer questions but I am thankful for all the people who have helped me and now I do many forms of things. That is my story so peace out everybody!!!