More Than Just Business

Many people know that Thomas Moon, me,  is a motivational speaker, author, blogger and advocate but did you know what I do to make this world a better places?

I am involved in many different charities and causes including American Cancer Society, involving disabilities and children, adoption, foster care and more.

I am often asked Why, I do so much in the community.  What drives me to volunteer?

One answer is that I see the need.  It is right in front of me and it is hard for me to ignore it.  There is so much to do out there.

Secondly, I grew up being told I could not do.  When I was in foster care everyone told me I could not do.  Teachers told me I was mentally retarded and that I was too stupid to learn.

Foster parents told me I could not do what the other kids in the foster home did.  I was usually stuck in the corner to watch TV.  I was like a bump on a log – literally – stuck in the corner and left alone.

So when I left the foster care system, when I joined a family – opportunities opened up for me.  I was allowed to do – I was encouraged to.  My parents did not put limits or boundaries on me.  So I started doing.

Now I guess I do so much because I was told so often that I could not do.  I was told I would not learn anything – that I could not learn anything.  Now I have a Bachelor’s Degree from Rasmussen College – not a made up degree, not a degree because someone felt sorry for the kid in the wheelchair – but a real Bachelor’s Degree in Business Management – something I earned and had to work my butt off and study for.

I volunteer because I can – because instead of being the kid stuck in the corner – now I am the adult who can help and make a difference.  That is so very important to me. To make a difference.  To help those who need help.  To be the voice for so many who can’t speak out for themselves or are not heard.”

One of my events coming up is the Third Annual Strike Against Cancer. Come and support the Strike Against Cancer event on April 5th at AMF Galaxy East in Ocala! Call TJ Moon at 352-502-5994 for more information.

http://www.youtube.com/watch?v=K4KrR5bL2nk

Remember that no matter how many obstacles you come across, people try to tell you what you can/can’t do, you fall on your face, etc, keep squeaking your wheels and moving forward because no one can make your life extraordinary except you!

Florida Service Animal Legislation

Thomas (TJ) and I recently visited the Capital for Disability Day.  We visited a number of our legislators.  We both believe that you need to be engaged if you are to make a difference.  Of course we never know whether we have made a difference or not.

However, if you do not try, you will never be an instrument of change. Being that instrument of change is what we are called to be.

This year I worked on HB 849/SB 1146 that deals with Service Animals here in Florida.  Service animals are covered and our rights protected by the American With Disabilities Act at a Federal level.

Florida’s law covering service animals has some gaps and loop holes.  The intent of the new legislation is to fill these gaps and bring Florida in compliance with the ADA.

Florida law only recognizes service animals for the blind, deaf and physically impaired.  There is no coverage under the state law for mental health animals, PTSD service animals or medical alert animals.

Additionally, the ADA defines service animals as dogs and miniature horses.  Florida does not specify which animals qualify as “service animals”.  This means that someone could claim a service cat, monkey or other animal.  This legislation would define service animal in Florida as the same as the federal standards.

The legislation would make it a misdemeanor in Florida to interfere with or deny access to anyone with a service animal.  Currently service animal owners have to sue at the federal level.  If it is in Florida statute a local law enforcement officer could issue a citation if a person with a service animal is denied access.

The bill also addresses penalties for fake service animals and the rights to animals under the Fair Housing Act.

Overall the legislation create very little that is new.  It simply brings Florida in compliance with the Federal ADA legislation.

All of the legislators I spoke with were favorable to the legislation.  Unfortunately there are often more bills to vote on than there is time for.  Many pieces of good legislation die because there is not enough time to get them through all of the committees.

For most of the citizens of Florida this legislation will have little or no impact on their daily lives.  For those of us who use service animals, this legislation is important.  A true service dog is considered a piece of medical equipment and is not a luxury but in almost all cases a necessity for the owner of the animal.

Hopefully this year the bills dealing with service animals will make a timely passage through the various committees and make it to the floors of the House and Senate.

 

Tallahassee – Disability Day

Thomas and I will be attending the annual Disability Day at the Capital on Monday and Tuesday of this week.  DD Day will be on Tuesday; however we will be up a day early so that we can meet with as many legislators as possible while we are in town.

As advocates and a self-advocates it is important to stay connected with our state legislators.  It is also important to be active on the national level.  However, I have found that as advocates we can be more effective at the state level.  The laws and budgets passed by the State of Florida directly and significantly impact the lives of persons living with disabilities here in our state.

I have been advocating in Tallahassee since Jeb Bush was governor.  I like to think that my efforts have had some level of success and have helped to make the lives of many Florida citizens better.

The issues have remained the same for as long as I have been doing this.  We need better employment opportunities and better transportation services.  These two often go hand in hand.  It is hard to find employment if you can not get to and from work.  Persons with disabilities have a high rate of unemployment.  Only 18% of people with disabilities are employed.

Every year we fight to keep the Early Steps program funded.  This is administered by Children’s Medical Services and is the Part C of the IDEA – Individuals with Disabilities Education Act.  They provide early intervention services for 0 to 3 and serve over 40,000 children in Florida.  History has shown that early intervention works.

The Med Waiver has been under funded for a decade or more.  We currently have over 20,000 people on the Med Waiver waiting list.  Every year we work to increase funding in an attempt to reduce the waiting list and continue to provide community services for those who so desperately need them.

Last session we saw and increase in funding and were able to remove over 1,000 individuals from the waiting list.  However, we still have a long way to go.

Every year the treatment of children with disabilities in our public schools is discussed.  In 2010 we had the first significant legislation protecting children from the abuse of seclusion and restraint in our public schools.  This year there is no legislation proposed so our children will remain vulnerable to abuse for another year.

Each year we fight the same battles.  Some years we make small steps and we celebrate our successes.  It is sad that advocates for the most vulnerable members of our society have to settle for small incremental successes.  However, that is the reality that over 20% of our citizens live with. That is the percent of people who have a disability.

This Tuesday, March 18 you should hear the squeaking of wheels in Tallahassee.  I hope that our legislators listen and appreciate how difficult it is for so many of our disabled citizens to make the trip to the Capital.  We want to be listened to, we want to be heard and we want to be taken seriously.

We will continue to keep squeaking our wheels for as long as it takes.

I Acquired a Brain Injury

Now I need to make it clean that acquiring a brain injury is not like acquiring a new car or a boat or television.  You do not go down to the Brain Injury Store and ask for a new brain injury.  It just does not work that way.

March is Brain Injury Awareness month.  To help raise awareness I thought I would share about acquiring a brain injury.

There are two types of brain injury – Traumatic Brain Injury or TBI and Acquired Brain Injury or ABI.  A couple of years ago I acquired a brain injury.

Traumatic Brain Injury occurs when something outside the brain causes the injury.  Being hit on the head with a hammer, falling debris from an air plane hits you on the head, falling down and hitting your head, car accident where you smash against the side window or windshield.  These are all forms of TBI.  As long as the injury is from something external the injury is classified as TBI.

Please do not think that I am making light of brain injuries.  I suffered a brain injury.  Mine was the acquired kind.  I just think that the term Acquired Brain Injury or ABI is an odd way to phrase a life changing event.

ABI’s occur when the injury to the brain is not from an external source.  Even to a lay person like myself that makes sense; TBI external, ABI not external.

If the brain injury is the result of a lack of oxygen to the brain it is ABI.  If you sniff too much glue you can cause ABI.  Drowning can cause ABI.  A disease such as meningitis can cause ABI.  And a stroke can cause ABI.

All of these are considered non-traumatic events.  Although as a stroke survivor, I will tell you the stroke was a traumatic event.  However, non-traumatic brain injuries are classified as ABI.

Brain injuries whether TBI or ABI can often be invisible to those observing the person suffering.  However, brain injuries are real and they can result in long term or even life long debilitating effects.

Just for the record, if I had a choice I would not have chosen to acquire a brain injury.  Acquiring a new car would have been a lot more fun.  As it was, I had no choice in the matter.

March is Brain Injury Awareness Month, be aware that those of us who have suffered a brain injury struggle to different degrees with many aspects of life that other take for granted.  Although our disability is invisible, it is still real.

I know that Thomas always ends his blogs with keep squeaking you wheels.  However, I have no wheels to squeak.  I will remind you that part of my brain died.  So what is your excuse?

Invisible Disabilities

Note:  I am Thomas’s dad.  I have been a disability advocate for obvious reasons and in April of 2012 I became a self-advocate.  For those who do not recognize the term, that means I became a person with a disability.

I am a person with a disability.  I do not wear a sign or have a label on my forehead saying “Disabled”.  Although I do have a couple of t-shirts that say “Part of My Brain Died What Is Your Excuse.”

My disability is not readily visible.  In April of 2012 I suffered a major stoke.  I am a stroke survivor.  For a time I was physically disabled.  However, with hard work and therapy I was able to regain the majority of my physical abilities.

One side of my body is weaker than the other.  This in spite of exercising.  I have pain in some of my joints.  I walk with a bit of a lilt at times, especially if I am tired.  One of my favorite side effects is that, if I bend over to tie my shoes there is a good chance I will fall over.

 All of these are minor inconveniences.  If this were the sum total of the lasting effects of my stroke, I doubt that I would be classified as disabled.

Understand that part of my brain died.  A large part?  I can not say if it is a large part or not. However, consider that loosing any part of the computer that runs your body is not good.  A scan of my brain shows a number of areas of white spots, some large and some small.  These white spots represent brain cells that are dead.

That is why I had the t-shirts made up, “Part of My Brain Died What Is Your Excuse.”  Realize, I do not use dead brain cells as an excuse for my behaviors, opinions or actions.  But they are dead nonetheless.

Recovering brain function was much more difficult than recovering physical function.  It is possible to exercise the brain, but it is not nearly as easy as exercising the body.  And the results are not as significant, or at least not as significant in my case.

Every brain injury is unique.  My experiences are not the same of another stoke survivor, even a stroke survivor of similar age.

As I sit here and write this, one of my brain issues becomes very apparent.  I have been a writer most of my life.  I made my living putting words on paper for many years.  My writing includes corporate work, magazine articles and at one time I had a weekly column in one of our local newspapers.

Writing came naturally, or I should say, writing use to come naturally.  Now I struggle to put words on paper.  They no longer flow from my fingers without effort.  The muse in my head no longer directs me or tells me what to say.

Each paragraph, sentence and word is work.  That is such a new experience for me.  Writing should not be work; it is supposed to be fun.

However, I still write.  I still have the urge to put words on paper.  I still have stories that need to be told and ideas that need to be shared.

My struggle with writing is just one of many brain issues.  My memory, especially short term, is terrible.  Yes, even more terrible than most males.  I have trouble focusing on tasks.  Numbers no longer look and act like poetry for me, math is now math.

There are other issues as well.  Some are private and are I choose not to share them publicly, not even on this blog.

Taken individually, my struggles or problems may not seem significant.  Maybe even taken as a whole they do not seem significant.  However, they have significantly impacted my life.

I have been told by acquaintances, I know now that were not friends, “Howard, I know you had a stroke.  But you are not really disabled.  Not like someone with Autism, or Downs Syndrome or Cerebral Palsy.”

Yes I know I am not disabled like someone with Autism, or Downs Syndrome or Cerebral Palsy.  On the other hand they are not disabled like I am.

My disability is invisible.  You can not see it and you have no idea what is going on inside my head.  Until you do, until you can understand what it is like to be me, then do not judge and do not  criticize, and more importantly keep your comments to yourself.

They Look Normal

Have you ever notice how we naturally tend to judge people without even being aware of it.  Maybe a guy walks by and we look at him and think “man why doesn’t he do something with his hair”?  Or maybe a woman walks by and we think “doesn’t she realize those pants look awful on her”?  I know petty as it may seem we all have done it or do this on a regular basis.  What about those times that we are in the store and we see a child that has an awful tantrum?  What is your first thought? “Those parents need to learn to get their child under control” or “If that were my kid I’d take them home and give them a good spanking or time out”.  Does this resonate with you?  Have you actually gone up to the parent and made a negative comment about their parenting skills?

We’ve all heard the saying “you should never judge a book by its cover”.  In life this applies  to people and situations more then you may realize.  Let’s go back to that child in the store and take a closer look at what might really be going on.  We have a mother that is taking her child to the store.  But what you don’t see or know is that this is a child with a disability.  Well how can that be you say because “they look normal”.  Ah here is the kicker….they look like any other child on the “outside”, but on the inside they are “wired” totally differently.  This trip to the store has over stimulated the child and all the noise, lights, crowds and waiting has caused this particular child to go into “sensory overload” and they are actually in physical pain over it.  All the child can do is meltdown to deal with it.  So the parent is doing everything they can to try to calm the child and get them out of the store.  I have experienced this first-hand as I have one of these children that “looks normal” but is wired differently.  And yes I have experienced the comments and looks from those “judging the situation” and my “parenting skills”.  I also work with children that “look normal” but actually have different disabilities even from my own child.  There are a lot of these individuals out there in our communities.

I hope that this blog post affects us all by nothing more than making us take a moment to stop and think when we witness something out in the community with a child, teenager or adult that may seem “odd” even though they may “look normal”.  Give them the benefit of the doubt.  Maybe their brains are just wired differently.  This doesn’t make them any “less” than anyone else…just different.

Guest blog by Deanna Rouse an advocate and parent of a child with one of the invisible disabilities.

Epilepsy and Medical Cannabis

Guest Blog by Jamie Sagona – Self-Advocate and friend.

I came across a New York Times article, which led me to a Huffington Post article,

which led me to a Tedx Talk video that blew my mind. It inspired my to do a large

amount of research into medical cannabis and its use for the treatment of seizures

(among other things). It has been a long time since any treatment for epilepsy or any

medical conditions for that matter has gotten me so excited or given me such hope.

One of the more cutting edge treatments gaining notoriety for treating seizures,

even the most severe seizures in children, is not what you might expect. It’s

medical cannabis. A specially derived extract from a plant that has been bred to

have no psychoactive effects, but more analgesic and anti-inflammatory qualities.

It has essential no tetrahydrocannabinol (THC), the psychoactive element found

in cannabis, and it has a high concentration of the non-psychoactive element

cannabidiol (CBD).

So far, there have been no reported negative side effects from taking medical

cannabis. Pharmaceutical treatments for seizures often cause one if not several of

the following: weight gain, fatigue, kidney damage, liver damage, depression, and

cognitive processing problems, among other problems.

A non-profit organization in Colorado called Realm of Caring developed this special

strain of medical cannabis and distributes it to children and adults with various

medical conditions, including epilepsy.

Children that were taking numerous pharmaceuticals and still having hundreds of

seizures a week are now seizure free or virtually seizure free after just one dose of

this cannabis extract. Not only are they seizure free, their cognitive and physical

development has rapidly improved as well. Research currently being conducted

indicates that this improvement my not only be a result of the lack of seizures, but

also due to a property of the medical cannabis.

The irony is that as far back as 1949, research conducted in the United States

showed that cannabis a good treatment for seizures. I am on a quest to learn more

about medical cannabis and its effect on seizures. What I have learned is just

the starting point for me. More research is being done every day internationally

to discover the medical properties and uses for medical cannabis. Luckily,

everyday more information comes out and more formal research studies are being

implemented.

I think it is not only important for me to share research regarding cannabis as a

treatment for epilepsy, but also as it relates to treatment for medical conditions

such as Alzheimer’s, Arthritis, Anxiety, Glaucoma, Depression, Multiple Sclerosis,

Cancer, Chronic Pain, PTSD, Parkinson’s, Migraines, Nausea, Tourette’s Syndrome,

HIV/AIDS, Hepatitis C, and Crohn’s Disease. And these are just a few of the medical

conditions that we know of so far. Pass it on.

http://www.huffingtonpost.com/2013/10/21/medical-marijuana-pediatric-

epilepsy_n_4137260.html

 

 

How others view people with disabilities and treat them like they are not really human.

Have you noticed how people without disabilities, treat people with disabilities like they are so special and people who help them are incredible human beings?

I was, with a friend/someone who helps me with certain actives like shopping and cleaning at  home that I can’t reach, at Sam’s Club the other day.  We were standing in line and a lady in line next to us comes up and says how it is so nice how you are helping that special person (Referring to me).

I had to fight myself to keep my cool or the beast in me would have come out! My support services person on the other hand couldn’t help but pipe up and respond to the lady, “Lady, one day we will all need help.” My support services person told me she had to hold herself back because she would have let the lady have it.

People say things like, “What is wrong with him, is he retarded or disabled or something?” There is no need for it, if you don’t know then don’t ask.  Besides it is none of their business.

There is a British video called Talk on YouTube and it turns the world around.  Persons with disabilities are the norm and those without disabilities are considered different.  Check it out, it’s funny and serious.

Time to change everyone and quit putting others down because they are different!

Squeak, squeak

 

Florida BLOGCON 2013

This is my second year attending the bloggers conference held in Orlando Florida. The conference has been going on for three years now. My first year was last year and I attended with my dad and brother and this year I attended with my brother.

I have to say that last year was awesome but this year was even better! The conference was held at Full Sail University which was a really great venue. Bess, Katy and the team did a great job putting the conference together.

The day started with me getting ready and waiting for my brother to pick me up so we can head to Orlando. When we got to the conference and signed in, we decided to look around and see what was going on. We were just going along when I suddenly hear someone call my name. I turned around and it was Katy, she wanted to say hello and that it was great that I came back this year. The keynote speaker (Pat Williams, VP of Orlando Magic and a motivational speaker) was about to begin so we headed over to grab our seats.

Bess, founder of conference, got on stage to welcome everyone and say a few things. One thing she mentioned was that this was the third year of the conference. She asked everyone who attended last year to stand up. Well, being in the wheelchair I did not stand up but I raised my hand, to my surprise Bess said that she knew I was there. She was the first person to ever do that and I was so glad she did.

The keynote speaker began and blew the crowd away. After that the different sessions started and went to 4:30. I attended many great sessions and had a great lunch provided by Bahamas Breeze. After lunch we had time before the sessions began again. We had choices to check out Google glasses, take a guided tour of Full Sail or to do yoga. The decision was to go on the tour.

The tour was awesome! We had some roadblocks because the tour guide took us though some doors that had stairs only. The tour guide nicely came back and led us through another entrance, while the rest of the group waited inside for us. Great experience and the university is wheelchair accessible for the most part.

After the tour, we went to other sessions until 4:30. We then headed off to a timeshare in Orlando that was family was at. My nieces 1 year birthday was that same day and we all wanted to celebrate before I had to go home sweet home.

One of the big messages we got from the conference is that even though we all have struggles and obstacles, we need to suck it up and keep moving forward conquering our goals and dreams.

I am so excited and can’t wait until next year’s conference but in the meantime we all need to remember to squeak our wheels until ours hearts content!

Becoming Disabled

Although I am listed as a team blogger with my son TJ, the reality is that I have allowed him to do most of the blogging.  It only makes sense, as he is the person living with a disability.  Being a parent is important, but it is not the same as actually living with a disability day to day.

As an advocate for those with disabilities, I have often been called on to give speeches or talks, or to even testify before our State Legislature.  I can not remember how often I have mentioned that being disabled is one of the minorities you can join or become a member of at any time.

Someone who is able bodied only has to trip and fall to join the ranks of those with disabilities.  A car accident, a virus or medical condition – so many things, some of them seemingly innocuous, can cause anyone, at any time to join those with disabilities.

In April of 2012 I took that step.  I went from what many in the disability community call a Temporarily Able Bodied (TAB) person – to a person with a disability.  The journey from TAB to disabled was relatively quick.  In my case it was a major stroke that paralyzed my right side and caused limited cognitive issues.

In the months and now year since my stroke, my right side has gained most of its mobility and although I still have cognative issues, I have recovered very well.  However, the fact remains that I now am classified as a person with a disability.

For those who are into classifying levels or severity, I would probably be classed as mildly disabled.  However, as the old jokes goes there is no such thing as being a little pregnant.  Of course I am not pregnant.  Rather I have limitations that were not there before.

My friends remind me not to complain and of course they are correct.  As anyone will tell you, all you can do is accept and move on.  That coupled with the fact that there is still so much that I can do – keeps me mindful of the fact that I am very lucky.

You have heard or read TJ say over and over again about living your life to the fullest, despite limitations or disabilities,  and of course he is right.  He has lived his disability day in and day out for over 26 years and will continue to live it for as long as he is around.

As a parent, I can tell you I can not ever remember hearing him bitch or complain.  Not once has he become distraught or depressed because of his disability.

He is the model that I try to emulate as I try to cope with going from TAB to a person with a disability.  I am always mindful of his continuing struggle and his continuing acceptance in the face of odds that I am not sure I could handle.

The message is simple, we move on and deal with any disabilities or problems that come our way.  At times we may falter or feel sorry for ourselves.  So we find a model or models that help to keep us straight, keep us from feeling sorry for ourselves.

I am lucky I can look to my son for that inspiration – I can also look to so many others I have met in my work and advocacy with persons who have disabilities.  I look to TJ, Heather, Manyvonne, Ian, Michelle, Linda, and so many more.  I remember how they persevere and keep living their lives as  best they can.  And at times live their lives better than they can, even though that may not seem possible.  But it is true.

 

 

 

 

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