Journey to Independence

     Being able to stand up for ourselves and gain some sense of independence can be very difficult, especially for those of us with disabilities. Personal care issues, living arrangements, limited income, or a combination of these can all be reasons for not being able to obtain full independence.
     When I’ve talked to friends on Facebook about their experiences on this issue, some said that their parents, for whatever reason were unwilling to teach them how to do things such as cooking, cleaning and laundry. This has got to be very frustrating for someone who is willing and capable of doing at least some of these household chores on their own. This is not doing them any favors. Being able to do at least some things independently allows us to feel some sense of accomplishment and pride.
    
     In my case, I was unable to live on my own mainly because of insufficient income. Although I was unable to live independently, my parents taught me how to be as independent as possible.  I was taught how to manage my personal needs independently. My father taught me how to fix certain things and how to do basic household maintenance, while my mom taught me how to cook, do laundry, AND although I don’t like to do it, she also taught how to CLEAN. J L Lol.
                       
     Another example of how to gain independence is being able to stick up for yourself. A young man who I am friends with on Facebook is living in a nursing home due to circumstances out of his control. He told me how much he HATES living there. Seriously, who wouldn’t? In a nursing home, your ability to be independent is basically non-existent.  You are expected to get up at a certain time, eat at a certain time and in some cases you receive therapies. I won’t even go there about how difficult it is to sleep in those places. UGH!

     I asked if he had ever thought about talking to the social worker where he lives about assisted living facilities in his area. I thought that might be a better living arrangement for someone his age and level of ability and desire for independence. To help him out, I looked online and found places near him that offered more independent living arrangements.

     Standing up for yourself can be difficult, especially when it comes to your parents or other close family members or caregivers. You don’t want to seem unappreciative, but you want to be given the chance to prove you can do things for yourself. Do your homework. Find information to back up what you want to say and do. But most importantly, know that this is not going to be easy on anyone. You want your independence, but your parents will most likely be apprehensive because they want to protect you and take care of you. Here are a few links to get you started. J

Housing – http://portal.hud.gov/hudportal/HUD?src=/program_offices/fair_housing_equal_opp/disabilities/inhousing

Schooling- http://www.bing.com/search?q:vocational+rehabilitation+services&qs=AS&pq=vocational+rehab&sc=8-16&sp=1&cvid=487D850E87F4D5AB2048A43FC65A378&form+QBRE

IEPs, 504 plan-
http://understandingspecialeducation.com/

Americans with Disabilities Act

http://www.ada.gov
  

My Academic Rocks

In my previous post, I talked about how we all tend to let “rocks” weigh us down and I gave an example of how we can get rid of these rocks.  In addition to rocks that anyone can have, people with disabilities have their own set of rocks. These rocks can be brought on by our disabilities (not being able to do certain things others can), thrown at us by others (being ridiculed because of our short comings), or they can even be self -imposed (having a defeatist attitude). We can let them weigh us down, or we can acknowledge them and then find ways to put them down and live our lives. In this post I am going to talk about The academic rock I have been carrying around and how Im dealing with it.

Soon after I decided to go back to college, I ran into someone I hadn’t seen in a while. I told her that I was planning on going back to college after a very long break. Let’s just say she less than supportive. This temporarily got to me. Was she right? Was I going to fail or at least give up again?  NO! I decided right then and there that I was going to prove her wrong.  She will probably have forgotten what she said by then, but I plan on sending her a graduation announcement to let her know I did it!

Not long after this conversation I met with the Disabilities Coordinator at the college and told him about my past at the college. He was surprised that I have been attending the college off and on since the late 1980s.  I jokingly said, yeah, my family might have to accept my degree posthumously, but I would get it!

During our meeting, I told him about how I have had major difficulties throughout my life where academics are concerned and how they are rocks or better yet, my boulders! I said I have always had problems with reading comprehension, organizational skills, and especially math and that because of these issues, I have developed a defeatist attitude, and yes, I have also become just plain lazy at times.

After I told him about my issues, we worked on strategies to try to develop more effective study skills including:  limiting the amount of classes so I can concentrate better, learning how to take better notes, and not procrastinate as much as I have in the past, AND ways to avoid distractions such as Facebook! Lol.

Although I am on academic probation again due to my nemesis, MATH, I am working on ways to become more successful the next time I attempt a math class. In the meantime, I am taking classes that I know I will be more successful in. By doing this, I am hoping to boost my GPA as well as my self-confidence. This is my way of gradually, yet steadily getting rid of my academic rock.

Different aspects of our disabilities can weigh us down, even alter our lives. We all need to look for ways to lighten our loads and not let other people and things pile on the “rocks”.  If you would like to, please feel free to share your stories of how you dealt with your own set of academic rocks. Thanks!

           

 

 

Put Down Your Rock!

I first posted this to my blog back on December 1, 2015. I had SO many people tell me how much it helped them I was overwhelmed. I would like to share it again for those who may need some encouragement. I hope you all enjoy it and possibly find peace in something you may be struggling with.

Thank you.

As we go through life, regardless of whether we are disabled or not, sometimes things happen that bother us. It could be something someone said to us, the way someone acted toward us, or maybe it was the way someone made us feel.  These things can have a negative effect on us which can be physical, mental or emotional.

 I am pretty good about letting things go and moving on. However, there have been a few things that have bothered me and I just couldn’t let them go no matter how hard I tried. Every time I saw a certain person, or if I am in a similar situation where the incident occurred, it brought back memories of a not so nice time or event in my life.

 A few years ago, I took a very interesting class. One day our teacher asked us to bring in a rock with us to our next class, but wouldn’t tell us why.

The next day, although I was somewhat confused and yet intrigued as to why we needed these rocks for class, I went out in my yard in search of a rock. I found one. It had light, medium and dark gray lines through it. It was somewhat pyramid in shape. It fit in my fisted hand. I liked it.

At the beginning of class the next day, our teacher told us about an experience she had when she attended a Native American ceremony.  The leader of the ceremony asked everyone in attendance to find a rock just as she had asked us to do. Once they had their rocks, they were asked to think of something, someone or an experience they had a hard time dealing with. At the end of the ceremony, the participants were asked to place their rocks in a pile as a symbolic way of leaving their issue behind.  Our teacher wanted us to do the same thing.

 Although I didn’t want to confront this issue, I thought this was a really cool idea and I really got into it. I slept with my rock right next to my pillow so I would see it as soon as I woke up and kept it in my pants pocket during the day so I would feel it pressing against my leg to serve as a constant reminder of the issue I was letting bothering me so badly.

 During the week, I thought a lot about the issue and I tried to analyze why I was letting it bother me so much, how it was effecting my life, and what I could do to handle it better. Being reminded of the issue by the rock constantly pressing against my leg, I was able to realize that the issue really wasn’t that big of a deal. I needed to put down the “rock” and move on. It wasn’t worth it. Once I came to this realization, a huge weight was lifted off of me.

Sometimes the “rocks” that we carry with us feel more like boulders and letting go isn’t as simple as just putting them down. Sometimes the rocks get thrown back on us and we end up having to pick them up again. It sucks when this happens, but we need to make sure that we don’t let these rocks weigh us down to the point where we feel trapped and cannot get out from under them. If this does happen, we need to realize that it is time speak to someone whether it is a trusted friend, a family member, clergy, or counselor. It is okay to do this. It is okay to admit we need help. Asking for help allows us to see our issues from a different perspective and assists us in putting down our rocks.  I would love to hear from people about how they handled a difficult situation and how they were able to finally put their “rocks” down.


Thanks.

`

Ever had one of those weeks?

Ever had one of those weeks? The kind where nothing seems to go right? Like you were on one of the hidden camera Punk’d type shows? Last Friday seemed just like that for me. It was a disaster!  First, my laptop died, then my cellphone died, then my car died, all in the SAME day! Seriously??????? I swear, electronics and anything mechanical hate me!  And it gets better, this all happened the day before I was supposed to participate in the wheelchair 5K for SB in Philadelphia.

 

I didn’t know whether to laugh it off, scream, or cry. The laugh it off option didn’t last long. I was NOT happy.

 I ended up putting the computer in the shop. The motherboard is fried.  I got lucky with the cellphone, I was able to just change out the battery. J

As for the car, it had to be towed, thank God for AAA! Not worth fixing. What now?

 I called my sister to see if she or her boyfriend could drop me off at the bus stop so I could get to the college all week, since I live in the middle of nowhere.  Oh, did I forget to mention that I had never taken public transportation and had no idea what I was doing? Thank God my roommate/best friend was able to help me understand how all that works. It was fun coordinating rides to and from school.

A good friend of mine agreed to take me car shopping to hopefully end the nightmare of being carless. I treated her to dinner as a thank you. We went to check out the first car I had seen online. It was a Honda Fit. It was a little bigger than I wanted, but I needed something a little bigger so I could put both my wheelchair and hand bike in it. It was priced within my price range, so I was happy, but I decided to look around some to make sure there wasn’t a better deal out there. I had bought my car that just died without looking around and I ended up paying much more than I should have.

We checked out several places and I was either not impressed, or it wasn’t within my price range. We decided to check out one last place. We were shown an ’09 Toyota Scion, automatic, power steering/brakes, power windows, AND a panoramic sun/moon roof. Oh, yeah! The price was kinda high for my budget, but the sales rep told me it was on sale for almost half off the asking price. YES!  This was definitely doable! The price allowed me to afford a two warranty on the car too. This way, I would be covered for a while in case, God forbid, something goes wrong. I am very happy with my purchase.

Have any of you had “one of those weeks”? I would love to hear about it and how you handled it. Please feel free to share your experience. Thanks - Jim!

Here’s my car. J

 

 

 

 

 

 

 

 

 

 

"SUCK IT UP!"

Sometimes people say things without stopping to think how it will make the other person feel. They might mean well, but it doesn’t always come out the way they intended.

            Friends of mine have a daughter named Anna who has Infantile Autism. This means she has very limited communication skills, developmental delays, and ritualistic behaviors associated with Autism. As if this wasn’t enough to deal with, she also has uncontrolled seizures! REALLY???? Autism wasn’t enough? This lead them to consult their neurologist on how to deal with her seizures. He told them about a study that was being done through Johns Hopkins in Baltimore Md., using a diet as a way to control seizures. He suggested they go down there for a consultation.

  The doctor at John’s Hopkins started off by asking how many seizures Anna was having. They told him she was having 800-900 seizures a month. His reaction was far from professional to say the least. “800-900 a month??  I have patients who have that many in a day!” My friends took his response as an insult as if he was saying, “Oh please, that’s nothing!”  In other words….

 

“SUCK IT UP!”

           

I am sure the doctor didn’t intend for his words to be so upsetting.  However, to people who have never experienced seizures or any other type of sudden onset illness, words like that can cut like a knife. They left the doctor’s office feeling like their concerns weren’t even heard, let alone acknowledged!

On the way home, they replayed the doctor’s words over and over in their minds. They started believing that what they were feeling was unjustified and that they should just,

 

“SUCK IT UP!”

 

Then it hit them. People are not supposed to have even ONE seizure let alone 800-900 in a month!  They had gone to this doctor for healing for their daughter and he left them feeling very upset and discouraged. This experience taught them they were going to have to learn to stand up for themselves and for their daughter. She was going to need a lifetime of care and in order for that to happen, they were not going to be able to just

“SUCK IT UP!”

 

We all go through difficult times in our lives and we all react in ways that are unique to us. It helps when someone is there to say “I might not know exactly what you are going through but I am here for you.”

 

But that’s not always easy, is it? We even have to tell ourselves to “SUCK IT UP” sometimes, don’t we? I know I have!

 

If we are able to feel true compassion for what other are going through, we’ll not only be able to respond without making others feel like they have to “SUCK IT UP!” but we can even help ourselves from feeling this way.

Has anyone else felt like they were being told to SUCK IT UP? What happened? How did you deal with it?

 

           

 

 

         

Physical Pain!

Physical is the most noticeable kind of pain. It can show in many ways; on your face, in your body movements, in the way you act and how you feel. The list goes on and on, but in simpler terms, you feel like crap!

            I am sooooo glad I don’t experience chronic pain due to my Spina Bifida. I might wake up sore and achy some mornings, but thankfully it goes away once I start moving. Even when I decide to be adventurous and do yard work, (I know, what was I thinking!?I?) I recover within a couple days. Some people are not so lucky.

            Since I have been on Facebook, I I have met a lot of people who experience daily chronic pain. I cannot imagine having severe daily pain that is some cases, causes people to have to rely on medications for any kind of relief.

            Tethered Spinal Cord is a very painful condition in which the spine develops scar tissue around it causing restricted movement of the spine and back. This is excruciating pain!

            Spinal Fusion is a surgery performed to correct scoliosis. This procedure involves inserting rods into the spine and attaching screws to correct the realignment of the spine.

            Just typing the descriptions of these two possible complications with Spina Bifida makes me cringe!

            I spoke to a couple of my Facebook friends about their experiences with Tethered Spinal Cord and Spinal Fusion to get there perspective on the level of pain associated with these issues. They told me that the pain associated with Tethered Spinal Cord was very intense. It caused them nausea, stabbing pain and restricted movement due to the tethering. As if Spina Bifida wasn’t enough already!

            If anyone out there would like to share their experience with this or any other issue causing physical pain, please feel free to share so that others will know that they are not alone!

Thank you!

           

Some-times in our lives.....

“Some-times in our lives, we all have pain” (Lean On Me; Bill Withers) and it can really suck! I don’t care if it is physical or emotional. It SUCKS!

Several years ago, my shunt malfunctioned. Yea! NOT! Not only did it malfunction, it got infected! Seriously?!?!?!? I ended up being in the hospital for the entire month of December because of the infection. So, yes, that means Christmas! There goes going places and exchanging gifts and missing out of my sister’s AWESOME rib roast. OMG, it is soooo good! But I digress…..

****It was brought to my attention that I didn't say that my sister  brought me some of the roast in the hospital. It was amazing as usual. LOL **** :)

Surprisingly, although there was some physical pain involved with this, the emotional pain was worse. On top of all that was going on with me, I was concerned about my father. Although he was in pretty good shape for an 80+ year old, I was still concerned about him. In addition to him taking care of himself, he was worried about me. He didn’t really handle my medical issues very well. Although he didn’t show it, they were very stressful for him. Because of this, whenever he would visit, I would always try to act as though I was handling things okay given my current situation.

One day while I was in the hospital, a very close friend of mine came to visit me.  She even brought me presents! J While we were talking, I broke down and cried and she just held me.  No words were exchanged, she just held me while I cried.

 

This meant so much to me.  

Years later, this same friend was going through a rough time. Due to certain circumstances, they needed to move. She knew this was something that needed to be done, but she still had a very hard time accepting it.

 

One day, she came over to my house for a visit. While we talked about what was happening, she just froze. I simply hugged her while she cried, like she had done years ago for me.

 

Neither incident needed words. Just the simple embrace of a close friend was enough.  We may not have completely understood exactly what the other one was going through, but we there at the right time for each other.

 

Our emotions can wreak havoc on us as we go through stressful times in our lives.  They can drive us to the point where we wonder if we will ever feel “normal” again. Have your emotions ever made you feel like you don’t know how you are going to get through a difficult situation? Have you had a friend come to the rescue and save your sanity? Please feel free to share your story and let others know they are not alone.