How do you cope with a child with a disability?

Growing up I always witness people asking my parents how do cope to care and raise a child with a disability. My parents thought it was just them so during the holiday I went to visit my little friend who has a disability an my dad ask his mom did anyone ask you this question before.. How do you cope with your child with a disability and why do not you put him or her in a home ? It really shock me that this mindset continues as we have come a long way but still have a long way to go. Back in the days people with disabilities was placed in mental institution or never came out the house because they were considered a disgrace to the family which is apart of history I will never forget.  They were mostly put in a place called Willbrook State School were they were treated unfair, etc.  My mom told me this story when she found out I had a disability doctor's told my mom they could leave me in the hospital or take me, my parents said I am God child so they would take me as I am. The raise me as a normal child as a baby when I was born until this day but my parents had to adapt to a brand new life being that I have a disability but one thing I told them when I was younger I need them to treat me like everyone else..treat me no different..
We are human too. It takes a courage and faith and hope to raise a child with challenges but its worth it at the end and forever we come with gifts and talents..  Sacrifice is a word I would give to all parents of children with disabilities because all what you do well worth it when you look back with the doctors appointments,diagnosis, the therapies, the IEP's, the sleepless nights,the judgments,the picky eating etc..Yes to my mother dear mom you have done it all until this day you deal with some of these moments still occur today some you proud to say I can handle on my own..You are so proud mom and dad these are moments you remember how much I grew.

My experience in Canada

 My experience in Canada 

How can you enable yourself in an inaccessible place? 

Many people tells me I have an "advocate eye" where ever I go I find a reason to have a "voice" to speak out, my parents often try to get me to stay quiet when we encounter with an issue that they know I am passionate about, I explain to them that we must not only be seeing rolling in a wheelchair, walker, cane etc but our voice must be heard. This past weekend I traveled to Toronto, Canada to spend time with family for their Thanksgiving holiday but I also went there with an advocate eye because every year  I travel to Canada and been wondering why I don't see such an high population of children and young adults with disabilities exposed in Canada I wonder if their put in homes or Institution like Willbrook "I hope not. Not only did I go there with an advocate eye but I encountered with accessibility issue at the Burger King. I also met with another individual who is a wheelchair user as well. When I went to eat lunch with my sister, mom and dad we had an accessible parking space but there were no flat surface for my wheelchair to get above the ground so my dad had to lift my manual wheelchair up from the street parking lot on to the sidewalk then we entered the restaurant to later noticed their were no assigned wheelchair seating area, me and the another customer who utilized a motorized wheelchair had no choice but to sit at the edges of the tables in between walls  and the walkway so we decided that we are not going to keep moving for abled body customers they will just have to walk around the other side, when my mom questioned the manger on why they are not accessible she came up with excuses saying "they can't do anything about". We even ask the customer who is a wheelchair user about accessibility issues and the population of people with disabilities in Canada to make sure I am not the only one just seeing these things as issue in my eyes and so passionate to make a difference, they responded I am tired of fighting my mom who is a strong advocate for these issues as well she told the customer "Keep fighting if not who will" and I handed her my business card.  Until this day I wonder how that customer who uses a wheelchair for mobility entered and exit the restaurant because according to my view they were no flat platform. Later this week on social media there was a pictured post that was shared on one of my group page member share an status from a Facebook user that  she received a phone call from her husband asking her to pick him up at the airport. She states that she was confused because her husband was supposed to be on a plane flying out of Rochester for a conference in Vancouver  Instead Air Canada refuse to let him board because he is quadriplegic and is unable to walk and made up several excuses on why you can't board, neither of these excuses made sense to me because he has Traveled all over the world even recently to Africa and did indicated on his ticket that he was  a wheelchair user that’s what caught my eye in this story that something is wrong, because I know customers who are wheelchair users probably pay more for their plane ticket just to have that accommodation, that’s total discrimination and a shame on Air Canada but from my experience this past weekend it doesn't surprise me with their reaction towards an passenger who is an wheelchair, their expression can tell me that they employees have the mindset that people who uses a wheelchair for mobility are not able enough to travel on their own not only people who have disabilities minds are affected. Air Canada  I hope you change your employees perceptions and make it right next time we earn the American Disability Act law 25 years ago, we recently celebrated history of the ADA law but look how far we have come with so much to be done. Canada government, business, restaurants etc let your individuals with disabilities be counted for.

The reason I created this blog

When I created  this blog it was in honor of my dear friend and sister Chelsy Blake who left me, her friends, her family and all who loved her dearly unexpectedly in September of 2014 to gain her wings in heaven, it was the saddest day for all of us but she will always be remembered for her love all who she loved, her smile,her happiness and passion to make a difference for those who are differently-able like herself, we had so much things planned to accomplish before she left my side. She even e-mailed me he business plan to work on it for her before her passing so I found it again a few days ago after looking through my email and I have deiced to find time an edit it and hope to be able to but some action to it I do plan on creating a business benefiting people with disabilities in the future  but what I do want to share is I am working on the draft of my first book about my life and Chesly although you are in heaven you will be apart of it. I love you girl I will always continue working for people with the vision you had for all of us.
Its us against the world I will never forget these words you spoken dailly

My reaction towards the idea of Guardianship

The idea of guardianship for a person with a disability is a great policy for a caregiver for an individual who are not  able to make proper discussions for themselves when they became an adult from 18-21 years old, this is an legal process and will have to go to family court to make an official steps in this matter. A parent will always believe they are their child's parent  and will be their guardian forever which is not the case unfortunatly. It makes a parent  feel like if a piece of their heart just broke away.. and they will no longer have no say for a child they care for and about esspecially when they have a dis-ability.  When I attend doctors appointments with my Home Health Aid, the doctors and nurses look forward to seeing my mother in appearance which makes me going to these appointments so discouraging, my mom is only considered my advocate to some point but all  discussion are made by me. My mom has done so much for me, now she is teaching me my independence and enjoying the breaks that she has now that I have all my support services that I didn't have years ago to take me to appointments and more. I know enough about my disability to relate to medical professions and even educate others, I know the right from wrong, I ask questions and if something don't sound right I say " Hold on" let me ask my mom for advice  I have a feeling that because I am diagnosed mild mentally delayed that would be the reason they look forward to seeing my mom or because I look young they don't think I am 20 years old, issues like this can possibly  make me required  for full guardianship. Because of this my rights and voice will be taken away I will give up my rights of choose  and since I am able I will be the one to sign off on this process. I don't want this to happen but that document is following me all over I want it remove but I don't know how this can change for me I am afraid that document will take my bright future away but my mom believe I am not in need of guardianship but I will now question whats on paper and how does it define me..
This has been on my mind for a while because I knew what idea would be

A Video of my Testimony on Uber

The word disability is to wide to define

So much labels that define disabily

Disability Pride Parade in NYC 2015

The disability pride parade was an awesome for the first time ever in NYC
I was so excited about the event before the day arrived because I always dreamed of a day to come in which the disability community can come together and the abled body community can have some awareness about people with disabilities
It is hard to believe we have come a long way within the passing of the ADA but we sure do have a long way to go in equality for people with disabilities
What I have done in honor of the ADA celebration and I know Chelsy would be so proud of the hard work I am doing towards school and advocacy.
I saw the legacy tour   bus in Brooklyn and Queens along with both borough presidents,
It was definitely my honor to speak at ICS women's health conference and I did so much more and things are continuing to happen

Plans in Honor of Chelsy

Chelsy was a hardworking, smart, lovely, passionate young lady but she always wanted to make a difference in the lives of people with disabilities. She was the founder of Awareness Key at her college. We want to keep her mission going so I came up with the idea that we should have a scholarship or sponsorship in her honor. 

I will be happy to keep you posted on this mission 

Thanks 

Light up the Empire State Building for all causes

Support all causes 
I notice that the Empire State building lights up for Autism Awareness, down Syndrome awareness and much more but it never lights up for the Cerebral Palsy Awareness month green is our color. We have a high population that keeps increasing of indivduals with Cerebral Palsy and I noticed that we are not recognized the way we should.  I know that my friend Chelsy will be so proud of me that I am making this part of my project on how we can get the Empire State building to light up the building Green when its Cerebral Palsy Awareness Month or day.
I will keep you update on this project

Introduction Of Chelsy Blake

My dear Friend Chelsy Blake was a friend I was honored to know and meet, the way we did was different, simply through a story being published in the Able Newspaper. She never had a friend like me being that I am just like her. We had a different best friend bound she was mostly like a sister to me. We had the same mind set and wanted to see the same ideas for making a difference for people with disabilities and was willing to journey me in my advocacy journey. She was willing to make my dreams come true and create many projects as we had a lot plan.. Weeks before we was planning to go on a advocacy mission to Albany she passed away unexpectedly.. Moving forward I have a lot planned in her honor

Behind the advocacy life

Behind the advocacy world this was never me.
When I become an advocate my world change, dreams as well as my personal life.
I am a star.
I am voice and opportunities grow each day I am bless.
I have endured so much before  advocacy I was always down now I have so much energy I am completly unstoppable.
Advocacy 24\7 on the roll.

Not giving up just found a different path

Often people judge me and will over look the choose I making but this is my life and I decide how I want to live it. Here is the great news I graduate high school and pushed and advocated that I go to college because at that time the only idea people had for me was to place me in a day program but I 100%  denied because I knew this world was big and opportunities now after two years of being in college and receiving college credits and is a good student I found that the knowledge I am getting in college will never been put to use in the work environment so I found my desire to  pursue my journey in becoming an certified administrative assistant and possibly a bookkeeping as well. I will begin this new journey after I complete  my fall 2015 semester I hope to go into the program. So excited for my new goal!

Spread Advocacy into the Caribbean

Disability History is important to me and I am  noticing that the Carribbean lack a lot for an important part of society. The Caribbean for people with disabilities is an example of Americans past for people with special needs
Check back for updates as I working on a paper for this topic..
Thank you!!

I am not broken so I am not disabled.

I am not broken
SO I am not disabled
What makes me disabled
is being differently abled
Some things are just a little more challenging than others
I am filled with inspiration and abilities..
All of these things make me different

My Experience During My Oral History For Visible Lives

On the day I had my Oral Historical project for visible lives I was interviewed by Monica Diaz. I was very nervous the night before this interview so I started writing down ideas because my story can go on and on. I just never know where to start. It was very funny.. Once we begin the interview my thoughts just started to flow without  any hesitation.. I guess it was the time to express what I really want the world to know about a person with a disability or to educate the indivduals around us about physical or intellectual disabilities.  When I begin to speak about all what I do and how I am a great advocate with all the committees I serve on as well as being a college student.. Monica was really inspired by my story and ask me when do I have time for friends and I had to laugh and say I always have to check my calendar all time. Monica also wished me will in my journey and said she hope to see me in the White House in 5 to 10 years from now like I expect to as well...

Contact your local officals

http://assembly.state.ny.us/mem/?sh=main

Be the voice for those who don't have a voice for themselves please contact your local officials and tell them please tell them no more budget cuts.. about to start writing letters to local officials and assembly members..its also time to make appointments to meet with them!..I am afraid of our future please keep the promise that you promised us years ago..

6 months..Already

6 months since you left my side but its still continues to be us against the world you always told me each day we spoke..tomorrow will make an year since you reached out to me by email and I took a few days to respond because I was not sure what to say back to you but I finally found the courage to e-mail you back and connect with you the network I have has change my life and allowed me to meet amazing people but you are my #1Chelsy Blake Yesterday I went  to an advocacy event..to speak to government officials..we have budget cuts and things are not getting any better..I will never forget you..when am the voice to make a difference..love you♥ RIP

Next Step

I am planning to start a disability awareness group at my college
I have to get in contact with someone who can help me get started so excited can't wait to get started!!!!!!!!!trinafightforrights.com

Forever in my heart

You are forever in my heart
Nothing will be the same with out you but I know you looking over me.
Your passion for advocacy with people with disabilities was so equal to mines and my views..Its not over because I want you to know I will forever keep your spirit alive..
Your are the only friend I had with the same kind of disability and level of understanding
The thought of how felt people in day hab and residence is being treated so unfair is my goal to change..Its a stastics that they believe we must live by and I know you were hurt by that and so am I..
Each night we spoke up such things my heart and mind would open more..
You are my heart.
Its us against the world- trina and Chelsy

Introduction

My name is Ketrina I am starting this blog on the behalf of my friend Chelsy who passed away 4 months ago