Archive for Growing Up Disabled

The Crisis of the Bearded Man with Cerebral Palsy

Ask yourself beard or no beard.

Once upon a time the bearded man woke up and realized that he suddenly had to use a wheelchair. The bearded man shouted out in worriedness, “How do I shave my beard now?”

The bearded man found a wheelchair rolling his way so he hopped in the cruiser and spun those wheels on to the bathroom. When he got to the bathroom he picked up the only shaver he had, a straight razor, and with his shaky hands went to shave his beard. Out of the bearded man’s mouth came a scream not even the Lady who was hard of hearing could stand.

Blood squirting out of the bearded man’s chin, he wiped off the blood, bandaged himself up and continued to figure out how he was going to shave his beard  without killing himself.

The bearded man thought about himself. “My hands seem to work pretty good, so if I only had something not that sharp to shave.” He kept on thinking and realized that they make an electric shaver where he can smoothly shave himself. He bought an electric shaver, got home and shaved himself. No more beard, crisis adverted.

People assume that people with disabilities can’t do things themselves, like shave. Not every person needs a care person to help them.

I was wondering how a person with no arms wipe there butt.  Like the bearded man, they find a way even if it may take a little longer.

Everyone has their own way of doing things so even though a person has a disability, it doesn’t mean they are helpless, it just means they may have to do things differently to get them done.

Squeak your wheels and get it done!

Attitude, Attitude, Attitude

The saying in real estate is that it is all about location, location, location.  Something similar applies to life.  It is all about attitude, attitude, attitude.

Having your health is nice.  Having friends and family is nice.  Having money is nice.  Having a good job is nice.  However, without the proper attitude, your life can still be lacking something important.

There have been numerous books written about having a good attitude and how it can change your life.  There are courses and seminars on having the right attitude.  There are those who claim having the proper attitude will promote healing.

Radio and television ads claim that getting your attitude right will make you rich.  Of course you have to pay them to find out how.

There have been scientific studies showing that attitude helps keep people healthy and that they often live longer lives.

If there is so much out there promoting having a good or proper attitude, then why do so many people still not get it?

There can be no excuses.  Being sick is no excuse.  Being poor is no excuse.  Being lonely is no excuse.  Attitude (except in some rare cases involving mental illness) is completely under our control.  Yes, we control our attitude.

There is no need to take a class, go to a seminar, watch someone on television or read a book on how to develop the proper attitude.  Each of us knows instinctively what a good or bad attitude is.  We just seem to choose to ignore it.

For those who are feeling sorry for themselves.  For those who want to give up.  For those who want to focus on their problems.  I say – start squeaking your wheels and change your attitude.

Note:  I do recognize that depression, anxiety and other similar problems do exist as an illness or condition.  In these circumstances and in the case of some mental or physical illnesses the individual has no control over their feelings or attitudes.  I do not include these individuals when telling them to get off their butts and change.  For those individuals I would suggest getting the help that is available and when possible make those life changes that they are capable of making.

Get Involved in Your Child’s Life!

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!

Crabbing From a Wheelchair

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!

Recap of TimeGate 2014

One day I am traveling through time and space with my big blue box, when I suddenly arrived at this hotel in Georgia where there was a convention going on called TimeGate.

Arriving at the hotel early, my dad and I checked in and brought everything to the room. Coming downstairs to register for TimeGate, it wasn’t time so we sat in the convention area and talked to a few Whovians, Stargate fans and more.

My stomach was shouting at me so we contacted my sister about dinner and we met them at a great pizza place after we registered for convention.

Arriving back at the convention, it was time for different sessions to start. I went to a couple and then hung out by the TARDIS, talking to others and taking pictures. The time was getting around 9 p.m. and I surprisingly decided to go up to the room to get sleep for the upcoming and exciting next day of fun.

“Just a few more minutes’ mummy.” I woke up ready to take on the day, battling Daleks, Cybermen and more. Ate a couple cheese sandwiches for breakfast and then headed down stairs to see all the costumes and go to a few more sessions.

I had this strange lady named Jamie texting me all morning saying her and her family will be there at 11 and did we all want to do lunch, so I decided to go along with it. Just so you know Jamie and her family are great friends of ours that we met at lasts years TimeGate.

I hung out in the convention area talking to people and along come a crowd of Whovians with Jamie as the culprit. We all exchanged hugs and handshakes. We decided to; do lunch at the hotel where they had hamburgers and hotdogs. We all chatted at lunch to catch up on what is going on with each other.

After lunch, we left my dad to be upgraded by the Cybermen and looked around the dealers room as well as take pictures. I got a badge thing from the dealer room that said, “Legal permit to park TARDIS.”

I joked that it was going to be my new disabled parking sticker.

Jamie and her family had to leave so we said goodbye.

I continued to hang out until it was time for my dad and me to do dinner. After dinner I went to hang out some more until it was time for the Ken Spivey Band to perform. I rocked out and after I had to wait in line for the cabaret. The Cabaret is where the special guests performed different acts.

Right after the cabaret was the masquerade costume contest which was great. My dad went up to sleep and said to come up when I wanted.

I went up’ stairs put my leather jack up stairs so I could go to the dance and boogie down.

I went back down stairs and got a soda while I waited for the dance to start. The dance started so I slid in smoothly like I was Usher or someone.

The jams were bouncing so I took off the legs for my wheelchair and got out on the dance floor and busted a move!

Sleep time was about 1 a.m.

The next day we packed up, then went to breakfast with my sister, her husband and my awesome niece. After breakfast we drove all the way home.

We survived the Daleks and had a blast.

One thing I liked about this year is there were reserved seating for people with disabilities and that I saw many more people in wheelchairs than ever before. Normally I am the only one in a wheelchair.

When are you going to start living and push your barriers aside? “I would be nowhere, if I did not decide to bust down those barriers!” Thomas Moon

You can get the unimaginable but you have to choose to dig out of the mound holding you back and never go back.

Check out my photos and never stop squeaking your wheels.

Life in the Box or Out of it

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.

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!

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