Tag Archive for disability

Slow Brain Day

| November 20, 2014 | No comments

I call them slow brain days.  You may have them.  Getting up is a little harder than normal.  Starting the day seems like work.  Everything you do just seems to take more time and effort.  Sometimes more time and effort than seems worthwhile.

If my teenagers had tried that years ago I would have told them they were being lazy or they were trying to get over on something.  And they probably would have been.

Now years later, having survived a stroke and having part of my brain die – it is something has happens now and then.  My brain just needs a break so it takes one.

I have learned to listen to my body.  If I am tired at 7 or 8 pm I go to sleep.  If my leg is doing the twitchy thing (that is my legs way of telling me enough) then I sit and let it rest.  So it would follow that if my brain wants to go slowly, then I should take it easy and let my brain have its way.

One of the advantages of being retired and disabled is that I have the luxury of allowing my body to dictate my schedule.  Why push my brain when it needs rest?  I have no pressing engagements.

There have been days that are not slow brain days.  However on occasion my brain will get overworked.  It is not exactly a headache and my brain does not really hurt, but it lets me know it wants a time out.

Anyone who has suffered a brain injury will probably know what I mean.  Those times when your brain just does not want to think, or rather not think to hard.

It is not something that we can control.  We may have coping mechanisms.  We may have ways to disguise those times.  However, the bottom line is that the brain usually wins and we have to give it a rest.  Literally.

This is just one of the many invisible disabilities that accompany brain injuries, both TBI and ABI.  Brain injury survivors have two choices, fight it or accept it.  I have found that fighting what my body and brain are telling me is futile.

I do stretch my limits.  I do challenge both my body and my brain.  However, when push comes to shove, I am overruled.

It is not the end of the world.  Slow brain day, then I just take it easy.  After all I have an excuse for lolling about, part of my brain died.

Previously posted on my blog Part of My Brain Died What is Your Excuse.

Category: Brain Injury, Disabilities, Living With A Disability | Tags: , , , , ,

Get Involved in Your Child’s Life!

| October 26, 2014 | No comments

How involved are you in your child with a disability’s life or any of your children?

I am not a parent so I am not coming from a parent’s perspective but I am coming from my own experience. I am an adult with a disability but I used to be a child of course. I went into foster care when I was about three years old and in foster care, no one gave me the time of day.

I was told I was stupid and would go nowhere in life. I was usually told to just go sit in the corner and watch T.V.

Having no support, I basically had no life. My life changed at age 11 because two wonderful people came and adopted me. The Moon family treated me like any other child and knew I wasn’t stupid.

My new parents got involved in my life and wanted me to go places, me too. We fought the school to get me a regular education and when getting nowhere, I was took out and home schooled.

We fought VR to help pay for some of my college, worked to find a way I can move out on my own/be independent and much more.

The moral of it all is that because I had/have parents involved in my life, it helped get me to where I am.

I say help because you can’t live your child’s life, only they can! Talk with your child, find programs and activities that will improve their life, take them to important things and actually get involved. Having parents involved in the child’s life will do much for amazing things and not just for the child but you too and even others.

I found this story online that shows how having parents involved in a child’s life (school, skills, work, etc.) will do wonders. Check it out at http://www.eduguide.org/article/special-needs-children-the-power-of-
parent-involvement

Your child is so important to you and I know you want the best for them, so get involved. You are going to have battles but you can’t give up, sometimes we have to squeak our wheels so many times before something happens but don’t you dare quit!

Category: Being Disabled, Disabilities, Growing Up Disabled, Living With A Disability, Raising A Disabled Child | Tags: , , , ,

Crabbing From a Wheelchair

| September 15, 2014 | No comments

I know eating crab is the best part but have you ever tried crabbing from a wheelchair.  Have you ever wondered how someone in a wheelchair goes crabbing?

I went deep sea fishing and crabbing about three years ago up in Maryland. I will tell you about the deep sea fishing before I tell about crabbing.

real fish pic (Small) Picture 115

 

 

 

 

 

 

 

When we got to the fishing charter boat, we saw that we had to climb down a latter into the boat which would have been a challenge for me.  Instead, two or three guys just lifted me up in my wheelchair and set me in the boat. I caught the biggest fish on the boat that day.

Crabbing time, we went down to a peer to go crabbing. I used a string, crab basket and some chicken necks to catch the crabs.

There were two ways I did the crabbing, one while sitting in chair and the other by propping myself up against the railing. Some people have to stay in the wheelchair because their legs are not strong enough. (You should work out your legs so they get stronger)

While sitting n the chair I tied the string to the crab basket and tied the chicken neck inside the basket. I then took and threw the basket in the water while holding on to the string. I let the basket sink to the bottom.

I let it sit a few minutes and then pulled up on the string until the basket was above the water. I pulled all the way up if there were crabs in the basket but if not I lowered back down.

Now doing the crabbing while standing up against the railing is pretty much the same except I was standing up.

Hopefully this gets you wanting to give deep sea fishing and crabbing a try. I thought it was a blast!

Get out there and do new things.  Remember squeaking your wheels will get you far!

Category: Being Disabled, Disabilities, Growing Up Disabled | Tags: , , , ,

Science Fiction, Fantasy, Comics, Gaming and Those with Disabilities

| September 6, 2014 | No comments

Dragon Con in Atlanta bills itself as the largest multi-media popular culture convention focusing on science fiction and fantasy, gaming, comics, literature, art, music and film in the universe.

It is held in a number of hotels in downtown Atlanta and the crowds can be massive.  Over 50,000 people attended this year, possibly 60,000.  They can be intimidating for people who have no special needs or disabilities, but for those with disabilities it can be a massive task to overcome.

Two things make Dragon Con easier for those with disabilities to handle.  First, the people who attend the Con are mostly geeks.  Yes we are geeks and proud of it.  Many of them have been picked on or made to feel different.  As a result, the Con crowd accepts everyone and judges no one.  No matter what, you are made to feel welcome.

Second, the Dragon Con disability services are great.  The staff and volunteers do their best to accommodate everyone.  It does not matter what your special need or disability is, there is an attempt to meet your needs.  As with any event this size, there will be problems.  As with any event this size, there are never enough sign language interpreters to go around.  As with any event this size, wheelchairs and walkers often get lost in the crowds and have difficulty getting through.  Elevators can also be challenging because of the number of people.

Despite the crowds and the size of the event, everyone I talked to had a great time and had little or no difficulties with getting the accessibility they needed.

I attended with my service dog Maggie and a friend also joined me with her service dog.  We were given seats up front in most cases to protect the dogs from being stepped on or tripped over.  It also allowed us to enter before the mass of bodies pushed through the doors.

Most of the attendees were respectful to the dogs and although many asked if they could pet them, only a few reached out without permission.

Overall the Con was a favorable experience – we had fun and Maggie handled the very large crowds very well.  I am not sure if a crowd of 50,000 to 60,000 non-geeks would have been as much fun or as easy to handle.

My experience has been that geeks (and I am one, albeit and older geek) tend to be accepting and easy to get along with.

Meanwhile, keep squeaking those wheels and have fun.

Category: Disabilities, Living With A Disability, Service Animal | Tags: , , , ,

Life in the Box or Out of it

| May 29, 2014 | No comments

There is this thing called a box that we put ourselves in.

Most people go from day to day with some kind of struggle or obstacle, like financial problems, work problems, relationship problems and more. People just don’t see the obstacle and move on.  They see it and sit back like that is how things have to be.

This box we put ourselves in can ruin our lives! The box may be comfortable.  It makes you not have to be afraid.  However, what kind of life are you living.

The world outside of the box can be so amazing that you just want to slap yourself. Outside of the box is that nice car you always wanted, great house, a good relationship, money, health and so much more.  Outside the box there are extraordinary things. All the box has is walls, disappointment, sadness and no change.

What kind of life do you want to live?  The old rusty one in the box or the extraordinary and rewarding life outside of the box? Comment with your answer below but I hope you choose the life outside of the box.

I personally choose to live outside of the box. I have had many obstacles put in my way.  like being put in foster care, people telling me I can’t do, people laughing meanly at me, people saying I am too stupid to learn and will go nowhere in life.  I did not listen and put myself in that box. I graduated with a Regular high school diploma, got a bachelor’s degree from RasmussenCollege, own my own business, live on my own and I am not stopping there.

I can’t drive right now but I hop in my wheelchair and take the bus places at least twice a week. Many of my friends see me riding down the sidewalk in my wheelchair and they honk the horn. They don’t know what I am doing or where I am going but they see that I am living my life outside of the box and not letting the naysayers win!

Stand your comfortable/lazy butt up and step out of that nasty box into the beautiful field of possibilities! Squeak, squeak, squeak.

Category: Being Disabled, Disabilities, Growing Up Disabled, Living With A Disability | Tags: , , , ,

More Than Just Business

| March 26, 2014 | 6 comments

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!

Category: Being Disabled, Disabilities, Growing Up Disabled, Living With A Disability | Tags: , , , ,

Florida Service Animal Legislation

| March 23, 2014 | No comments

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.

 

Category: Being Disabled, Disabilities, Living With A Disability, Service Animal | Tags: , , , ,

Tallahassee – Disability Day

| March 16, 2014 | No comments

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.

Category: APD Budget Cuts, APD Waiver, Being Disabled, Disabilities, Employment | Tags: , , , , , , , , ,

Invisible Disabilities

| February 26, 2014 | No comments

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.

Category: Being Disabled, Disabilities, Living With A Disability | Tags: , , , , , ,

They Look Normal

| January 21, 2014 | One comment

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.

Category: Being Disabled, Disabilities, Growing Up Disabled, Living With A Disability, Raising A Disabled Child | Tags: , , , ,
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