My trip with the Make-A-Wish Foundation has finally reached its final stages. After nearly 4 years since being nominated for a "wish", I'll be flying off to Rome with Mom and Dad to meet the Holy Father, Pope Benedict XVI at the Vatican this February.
My Mom, Dad, and I will be leaving from Atlanta in early February and we'll spend 6 days in Italy. I can hardly believe that I'll be traveling across the "pond" as my Dad calls it. Once there, we'll get settled in our hotel and do some sightseeing before we visit with the Pope on Wednesday. It will be sooo cool! How many 9 year old kids get to have a private audience with a head of state and how many kids get a special blessing from the head of the Roman Catholic Church? I'm pretty blessed.
Please stay tuned. I'll be making my Dad post the pictures from our trip and I'll make him do more posts so that everyone can stay up to date!
Grandmom and Pop Pop were visiting and we were looking for something new to do, besides swimming. It's very hot right now in west central Georgia and doing anything outside is tough for me. One of our local cinemas also has an indoor minature golf course, laser tag, and...a skate rink. None of those are great for someone in a wheelchair but my Mom decided to ask if the staff would let my parents push me in my chair while they skated behind me.
We had a great time. All the kids were checking out my light up wheelchair wheels. My parents hadn't been in skates in years, but they were looking pretty good. My 2 and 4 year old Sisters even gave it a try. I got help them learn too! They used the handle on my wheelchair to balance themselves.
I would really like to thank the Carmike Hollywood Connection for letting me have so much fun at the skating rink!
A few weeks ago, my Dad posted a response to a New Times Times article about how New York State was failing it's developmentally disabled by letting abusive people who work in the groups homes and residential care centers assault, neglect, and now murder helpless children.
"Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan."
A follow up article by Danny Hakim continues to illustrate how little New York State cares for the people that are entrusted with their care. While the media provides a deluge of updates on Hollywood stars, and political pundits talk about human rights violations in far off lands such as Libya, Syria, and Egypt, we have children and adults who are trusting our elected officials with their lives. Our tax dollars are being sent to help other countries while children, like Jonathan, are being crushed by in the back seat of a van because he was showing behavior that is consistent with his Autism. This is happening right here in our very own country. America, the greatest county in the world, is not preventing the most helpless section of our population stay stafe.
We need to take a stand and let the people that are supposed to protect us that it is not OK for even one more incident to occur. Please write your Congress person and Senators and let them know that you won't stand for this.
That's the saying that means act in a manner that is customary to the local population. I better brush up on my Italian because I'm headed to Rome!!! About 3 1/2 years ago, my Mom and Dad submitted an application to the Make-A-Wish Foundation. They approved the application and asked what my 3 top wishes would be. Since I can't speak, Mom and Dad told them I wanted a special blessing from Pope Benedict in Rome. We knew it was a pretty big wish to ask for and we were sure that it probably wouldn't be granted, but it never hurts to ask. Right? They were hesitant about the wish because they don't normally grant international travel wishes to children that can't speak and they were worried about what would happen if I had a medical emergency so far from home. My Wish coordinators and my parents really had a lot of work to do.
After almost 4 years of waiting, I found out that my wish has been granted! We don't know dates yet, but it will be pretty soon. My Dad already submitted my passport application. Once we get that, we'll start planning everything that goes into arranging a special audience with the Pope.
I'll you all know more as the details start to pan out.
My Dad just finished registering as a St Jude Hero. He'll be running the 2011 St Jude Marathon in Memphis this December. I would like you all to click the St Jude banner at the top of my blog and considering helping my Dad reach his $2500 fundraising goal. I won't be running this year with him because the powers that be have determined that it's too "dangerous" to have a 9 year old child (in a wheelchair) on the course.
Oh well, it won't be much longer until I'm 16 and can register right along with him.
A car owned by Enterprise Rent-A-Car illegally parked in a handicapped parking space.There are few things that really annoy my parents in regard to my disability. One of those is when people illegally park their vehicles in accessible or "handicapped" parking spots. Today, while out running errands, my Dad drove past a local Enterprise Car Rental store that has a history of blocking the loading zone next to an accessible parking spot or blatantly illegally parking in those reserved spots. My Mom and Dad have spoken to the manager and employees of several occasions about how it's not only illegal but also inconvenient for anyone that needs those parking spaces to load and unload wheelchairs, has difficulty walking distances, etc. Today, my Dad spoke to manager again and he admitted that they were "in the wrong and had no excuse for allowing this happen". If this was a one time occurrence then the manager's excuse would be legitimate, but history shows that this company has little regard for obeying laws or caring for people with special needs. My parents have been complaining to this company for nearly a year and nothing has changed. I hope that any of you that read this will complain to them and I hope that the Columbus Police Department will start enforcing our laws and holding them accountable.
A lot of times, people park in a handicapped spot out of convenience. They may have a placard or disabled license plate for a person in their family, but they park in those reserved spaces regardless of whether the family member is with them. I've seen cars park in a accessible parking spot only to see some able bodied person get and stroll into the store with little or no regard for whether they are inconveniencing someone who truly needs a parking space with extra room or that is closer to the store entrance.
Let's face it, most Americans could use the exercise that comes with finding a parking spot that's further away.
I met a new developmental pediatrician today at Sparks Clinic today. Most children with disabilities like mine are followed by a developmental pediatrician. These are specialized pediatricians that works with children that have a wide range of developmental issues such as Autism, Downs Syndrome, Rhett Syndrome, etc. They also act as a hub for children like to me to link with other medical and diagnostic professionals. My parents and I are very excited about this new doctor and this new chapter that she will hopefully lead us to. See, I've been battling my seizures for so long that they became the focus of my treatment, but now I'm at a place where we can, again, explore new diagnostic options, new research, and newly discovered syndromes in an effort to discover what is causing my disability. My seizures are still a big issue for me, but we've reached a point where the path of treatment has become less clear and we are playing a waiting game to see how my brain responds to the 3 surgeries I had in the past two years. I will still be seeing Dr. Kim for my epilepsy treatment. Dr. Khatri, the developmental pediatrician, is a young vibrant and invovled doctor that recognizes my issues as a challenge. She also understands that my parents care a great deal for me and would like to know everything they can about my specialness. She's in demand and wasn't accepting new patients until my Dad convinced to hear my story and meet me. Now, she's on board. I tend to have that effect on women...I'm pretty much irresistible!
After today's meeting, Dr. Khatri will get with a team of professionals and arrange a very comprehensive evaluation. I will have lab work done that will assist some geneticist in looking for any newly identified gene markers that may shed light on my delay. This is great because my last genetic evaluation was over 5 years ago and genetic research has been advancing every 2 years of faster. Some of the test that were performed on me when I was 3 years old are now considered antiquated and no longer used. I'll also meet with a new neurologist that specializes in metabolic disorders. These disorders are wide ranging and their impact on the children, like me, is just as wide. Some haven't even been discovered or named yet, but they still affect us. Like genetics, this field is advancing just as quickly. The last metabolic work up I had done was at Duke University Children's Hospital when I was 2-3 years old.
Included with these new doctors, will be other professionals that will evaluate and test me to see where I am in my development. I'll meet with a developmental psychologist, occupational therapist (OT), physical therapist (PT), and speech and language pathologist (SLP). I see an OT, PT, and SLP now but these work in the school system and are not of the same caliber that are common at teaching and research hospitals.
It will be a long and challenging road just like it was for me to get to surgery to treat my epilepsy. We're all excited about the work that lay ahead. My Dad will be traveling with me a lot to Birmingham, AL (our second home). My Mom and Sisters will continue to care for me and help me everyday. My new helper, "Miss Amy", is ready to help me on my journey too. Miss Amy is super energetic lady that has me walking and working on my goals for much of the day.
I'll keep everyone up to date about this new and exciting chapter in My Journey...
I was contacted by a site administrator who manages a site that helps patients understand the risks and side effects of the drugs we take. Drug Watch appears to be a great site to help educate those that are taking medications that may have very serious side effects. There are times when our doctors don't fully communicate the risks involved with prescribed pharmaceuticals. Thankfully, there are those that are dedicated to spreading the word.
Take some time to look through the site and see what they say about the anti-epileptic drugs you may be taking. You might learn some facts that need your doctors attention at your next nuerology appointment.
Knowledge is power...don't rely soley on doctors for information when it comes to your health or the health of the ones you love.
Tomorrow is an exciting day for my family and I. We'll be headed back to Birmingham, AL, but we won't be going to Children's Hospital. I'll be seeing a new development pediatrician at the Spark's Clinic. I haven't been to a developmental pediatrician in several years because my family has been so focused on controlling my seizures. The reason that this visit to the doctors is so exciting is because developmental doctors are well versed in the most recent research. They are up to date on new genetics testing, new treatment options for children like me, and many other things that specialist may not know.
The doctor I'm going to see is highly recommended and wasn't accepting new patients. My Dad had to speak to her on several occasions and encourage her to take my case on. He was able to express how unique I am and this doctor recognized that I present a special challenge to doctors.
I can't wait to report what sort of ideas she has.
A recent article in The New York Times illustrates the saddening lack of oversight that our government provides when it comes to the care of persons with disabilities.
A New York Times investigation over the past year has found widespread problems in the more than 2,000 state-run homes. In hundreds of cases reviewed by The Times, employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases, were simply transferred to other group homes run by the state.
And, despite a state law requiring that incidents in which a crime may have been committed be reported to law enforcement, such referrals are rare: State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than 5 percent were referred to law enforcement. The hundreds of files examined by The Times contained shocking examples of abuse of residents with conditions like Down syndrome,autism and cerebral palsy.
Americans are always trying to be a beacon of enlightenment in the world. We try to proclaim that our standards and morals are worth following. We support regime changes in lands where dictators abuse the rights of humans. We send our war machine to topple governments that allow their citizens to be tortured. What is different about the state of affairs in the Office for People with Developmental Disabilities? Their website banner proudly proclaims "Putting People First". That can't be right with statistics like this:
State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than 5 percent were referred to law enforcement. The hundreds of files examined by The Times contained shocking examples of abuse of residents with conditions like Down syndrome,autism and cerebral palsy.
Why is the UN not discussing sanctions against the US for the repeated lack of protection for people that need the government to protect them, care for them, advocate for them, support them? It is time that we start holding our elected officials responsible for their lack of leadership. They've been elected to ensure that the laws of the land are followed, that public services are rendered, and to protect a section of the population that can't speak for themselves. Why is Governor Cuomo not standing tall before the New York State Legislature defending his impeachment? As the elected leader of the Empire State, isn't he ultimately responsible for the actions of his government? An extra-marital affair is apparently enough to have a US President impeached. Why is the rape of someone with Downs Syndrome, or the physical assault of someone with cerebral palsy, or any of the other 13,000 allegations from 2009 that went un-investigated not enough to warrant at least a public hearing?
Families of people like me, the ones that need constant care and love, have a life long struggle ahead of them. Normal no longer exists. We can't just go out to a movie, or the pool, or a restaurant without planning and preparation. Where will I sit, what will I eat, will my wheelchair fit, will my "special noises" disrupt the other patrons? Those are just a very few of the considerations that my Mom and Dad have to consider every time we leave the house. That is why my Mom, who has a Master's Degree, has made the sacrifice to be a stay at home Mom. She could go out and work and earn a very nice income. We could live in a big home and have all the new gadgets, but who would watch over me? My Dad couldn't do it, because he made a sacrifice too. He joined the US Army so that I could have the best health care and our family could have a stable income and good family support. But being a Soldier means working 10-12 hour days. Sometimes it means going to another country to fight a war. Thankfully, the Army hasn't asked my Dad to make that sacrifice yet. His commanders kept him home, close to me, so that he could help with my needs. Families like ours must make sacrifices that are different from the kind of sacrifices that "normal" families make. We have to constantly balance between doing everything we can at home or sending off our special loved ones to institutional care. It's similar to the phase that comes at the end of our life. When our parents flip roles with us. We must become their caretakers. My Mom and Dad are the ones that make sure I'm loved and that I don't sit in a dirty diaper for five hours. They are the ones that speak for me because I can't speak for myself. They don't do it alone either. My sisters, grandparents, and my extended family all help me everyday. That's not the only help I receive though.
The State of Georgia also helps, by providing programs like the Medicaid Waiver Program. This program is designed to help families keep loved ones in the home. I get money from the state to help pay an in-home aid that helps my Mom. This person does therapy with me, feeds me, but is under the supervision of the person that loves me most; my Mom. America needs more programs that support parents of children that are special. Its cost less to keep a person with developmental disabilities in their home than it does to institutionalize them. Why not educate and support parents before they get to the end of their rope. Most parents don't want to send their child off to a group home, but they run out of options. Everyone needs some level of self-care. We all need a break, a vacation. If more states offered programs like this and truly lived by their mission statements then the maltreatment of America's most needy citizens could be reduced.
America has come a long way from the days of the Willowbrook State School but we still have a long way to go if New York is still allowing abusers to move from one group home to another without any real consequences.
Caution: This video is not easy to watch and shows the neglect of children.
Please contact your elected officials and advocate for your special loved ones.
Monday, January 9, 2012 at 16:33 
