Dear ones with a disability & their loved ones, (a letter)

Dear ones with a disability and their loved ones,

As one who had taught children with an IEP for years I owe you all an apology. I understood some of what you needed me to but other parts I HAD NO CLUE. I thought I did. But, now I know that I did not. Allow me to expound.

If I could go back in time prior to my accident I would have understood that you were trying. I always knew that you were, in manner of speaking, but I did not know how long and frustrating the paperwork trail was and the doctors search can take. I apologize for thinking that it must be easier than it seemed and for thinking that you were just making excuses.  So often I heard people state that you did not seem to care and that you were not even trying. Who was I to judge you? Who were we to judge you? You, the ones who were in the middle of the battle. The battle to get the best care for your loved one or for yourself. You must have gone to doctor after doctor to just find one willing to fill out the paperwork. You must have seen doctors that looked at your records and told you that they could do nothing and did not even examine you. I know because I have. I have had those who we are supposed to be able to trust, lie to my face and tell me that the paperwork will be filled out in a manner in which I agree to. Then find the paperwork in my mailbox a few days later with statements that we had not agreed to and no attached paperwork.  The one that came yesterday had never been sealed. Did the needed papers fall out? Who has my information? The list goes on and on.

Attorneys, the fees are exorbitant and what you get back in return is people who go to court with you and then quit the next day. (Mine did) Or how about the ones that tell you that they will get to your case when they can and that they are already  missing their child’s game trying to just keep up with the caseloads that they have taken on. That is not our fault. That is  not an adequate excuse when we are without an income for months, or years at a time to be able to afford the meds that we will be questioned about by those who sit on committees etc. I understand now why some of you had to cut meds in half or even choose to pay for only one med of the prescribed three. You needed to keep a roof over your heads and have food in the pantry. Free lunches and food handouts can only help so much.

I want to apologize to you for a system that seems to not care. One wherein you can ask them to dim the lights during a meeting for your loved ones eyes and then hear them complain that they are half brain dead from not being able to see.  This comment alone stays with you for quite some time as you hear it in the light of one who has a loved one with dead brain cells who cannot see as they used to and never will again. Or how about the person in the hearing who you divulge your deepest concerns to that at the end of the meeting when time is almost up that asks, “What does any of that have to do with why we are meeting today?” Then they announce that it is time to wrap things up. In your mind you know even before the papers come that you lost again. You feel crushed. No more funds to live on for months to come and the paperwork will start all over again. Back to the doctors, calls to the lawyers and more. All costing money that you do not have.

I am so sorry that I treated you as I did. I am so sorry that the local schools I offered to go into to speak now did not even call me back. I cannot speak for you in their meetings but I can BLOG. I can fight and call the representatives and tell them that enough is enough. It is so hard to live with a disability but the feeling of being one nobody cares about is the worst to me. Know that I care. Know that God cares. I am here for you if you need a disabled retired teacher to talk to. I now get it. I now understand things that I never knew. Dear ones, you are loved. I am sorry. Keep on fighting for your rights.  HUGZ

 

PS Thanks for letting me get that out. 🙂

 

 

 

 

Hesitation Is Risky

via Daily Prompt: Hesitate

 

“Miss, you have been in an accident. Your vehicle rolled over and we had to cut the roof off to get you out.”

Being turned to the side on the board she was strapped to she threw up again. The pain in her head was immense. If only she had not hesitated to put on her seatbelt correctly before they had pulled out of the parking lot. It was not comfortable and so she had taken the shoulder belt over her head and was attempting to fix it so it did not rub her bare skin. Doing so while in motion on the road was not a good idea. She thought it would be okay as they were in town and she was in the back seat. But when she saw the car in the intersection coming at her she knew she had no time to fix the situation. Before she could say anything the oncoming car had struck the rear wheel well just behind her and set the car tumbling over and over again. All she could do was try to hold on. Thank God she had kept the lap belt on. If she hadn’t she would have been be a free agent inside the tumbling car.

The male voice continued, “Miss, can you tell me your name?”

Trying to think all the while vomiting up phlegm she tried to state what she knew. “My name is Pam. Are my friends okay?”

“They have been transported already. You were the last one taken out of the vehicle. We had a heck of a time getting to as you were buried in tools and stuff from the back end of the car. These new vehicles without trunks are horrible in rollovers. Everything back there becomes air born. Let me take a look at that head of yours while we wait on your transport.”

“My head hurts so bad. There and my back.”

“You must have lost consciousness for a while. We need to place this horse collar onto your neck. You do not want to cause any more damage. When you feel sick we will continue to tip the flat board you are on to the side so you can vomit. You will be transported as soon as the vehicle that took one of your friends gets back. We are a small town and we have only so much help here. So, get comfortable as it may take a while.”

Laying there waiting Pam could hear the voices of the site seers around her. A policeman walked over and began to question her.  “Miss, I need to ask you some questions. First of all, when they found you in the vehicle you were in a weird position. Did you not have your seat belt on?”

“I had my lap belt on but I was in the process of fixing my shoulder strap because it was rubbing my skin. I did not have it on properly. I had hesitated to adjust it when we pulled out of the lot near the ball game.”

“Well Miss that was not a great idea.  That hesitation was quite risky as you can see. You could have been killed.”

In that moment Pam knew that her hesitation was unwise. She had injuries because of it. Her life was possibly going to be altered because of that moment she risked all. But, she was alive.

 

 

 

 

 

 

 

 

 

 

 

Baby – My Green Cheek Conure

via Daily Prompt: Baby

Baby is a green cheek conure that I have had now for about six months. As one with a TBI it is difficult for me to bend over and stand up much (dizziness)so the decision to get a bird for a companion rather than a dog was one of health issues. I could not care for the dog to lift it and hook it onto the lead to go outside, thus I got a bird.
Getting a bird that I could hold and teach to talk was a decision based upon the fact that I missed having a student in the classroom and the fact that I could hold her when lonely at home. A green cheek seemed to be the best fit because of the size of the bird and the noise level. Loud noises from a larger bird would be too much for me. My little baby was only a few months old when I got her. It took her a few days to acclimatize to her new home but in a matter of no time she could say her name and play peek-a-boo. Now that she is nearly a year old she has bonded with my family and travels with me when I go out. Yesterday, for the first time in a long time she got to go for a ride in the car and was singing all of the way to the Olivesburg General Store about five miles from our home. People are amazed how she rides around on my shoulder and how she will set on their finger. She is an amazing little bird. I am so glad she is a part of my life. Perhaps one day you will meet her if you come to the Farmer’s Markets near Mansfield, Ohio. She would love to say Hello.

Slur :Daily Word Prompt

Acronym for SLUR given will help those trying to understand someone they love

As of late I have been thinking about the special needs children whom I taught in a new light. I have a Traumatic Brain Injury and have had it for about two years now but the kiddos I worked with will have their disabilities their entire lives. Today, because of this prompt I am reflecting upon the children that will never have clear speech. The ones that most did not understand. How frustrating it must be for them to go through life with slurred or intelligible speech. For me, my being able to understand them improved with time as I learned to tune my ear to their format of speech. Yet, even then in a group setting or when attempting to grade their performance in reading I often struggled. So, with that in mind today I am going to help all who need to understand someone with a slur. We are going to use the word to make an acronym to help you when you speak to anyone including those with a stroke etc.

The SLUR Strategy:

S – Stop and really try to hear what they’re saying.

L – Look at them as they speak. Watch the motion of their lips as well their body language. Body language can relate a lot.

U – Understand that with time you will know what they are trying to communicate better. You need to know that it may not be easy for either of you but practice makes perfect. If you get impatient calm down and keep trying. It will be worth it in the end.

R – Rephrase what they have said and ask them if you are remembering what they said correctly. “I think I heard you say that you need a glass of water. Is that correct?” Take responsibility for understanding onto yourself and do not blame them if you cannot understand them. They cannot help how they are able to communicate. It is not to blame but to understand.

Slurred speech can be frustrating to anyone. But the children I taught always did their best to help me understand what they wanted to say. I am thankful that my disability does not hinder my communication skills. I am also thankful that God has blessed me with having been able to work with people who did. I will always cherish them.

God bless us everyone.

My Hideout: TBI Survivor

via Daily Prompt: Hideout

How would one define the word hideout? In the old western movies it was a cave where the gangster went to hide from the law.  In some movies it is a closet where the woman tries to be unfound by a perp that is about to accost her. But, my hideout is simply my home.  As one who has survived a Traumatic Brain Injury I am home most days now. It is my hideaway, my refuse from the storm of life of which I am a part of.  As the world about me continues I am alone most days with my hobbies and the sounds of the television or radio.

I hideout from the overstimulation of the world. I hideout from those who see me in public and challenge me by asking if I have driven knowing that I have a TBI and had been asked not to.  I am also challenged by those who wonder if I yet have an income (have gotten disability yet) and of my lawyer thinks I ever will.  I hideout from the sounds of life; the rooms full of multiple voices, the yells of the person in traffic and the screaming parents in the store where I used to love to shop.

I hide out.  I hide from most all of you; those who are going about life  your typical day to day lives. Those of you who complain about having to go to work and about how your pay check just doesn’t cover all of the items you want.  I hideout and wonder when or if I will ever see a pay check again.  I try to use up things we have and do not shop like I used to. I don’t want to be a burden.

I am getting better at coming out of hiding from time to time.  I like to be with people who see me as myself and not as a person with a disability. I like people who at least attempt to understand.

My hideout might not be forever, but for now it is where I feel safe. I am blessed to have my hideout and someone I love to share it with.  I am not a villain in a movie or one hiding from a perp. I am just one who seems to be seeking where she fits in now she is not her old self.  In time, I will come out of hiding and meet the challenge straight on. I am getting closer. But until, you know where I am at.  I’m home in my little hideout.

 

Dedicated to all who have a TBI or care for someone who does

 

 

 

Rollover in town :Against the Odds

via Photo Challenge: Against the Odds

If you had told me that day that I would end up in an SUV on its side after rolling three times I would have told you that you were crazy. I had never known that a large SUV could be pushed over by a mid sized car traveling at 25 mph in town.  I know!  I still cannot believe it! Here is how I know. I was in the back seat on the passenger side of the car when the person driving the SUV I was riding in unknowingly ran a red light. An oncoming mid sized sedan did not brake and drove into the back end of the SUV right behind where I was sitting. As the car hit it went into the rear wheel well and thus acted like a wedge as it continued up and under us. The vehicle I was in rolled over and over and landed on the passenger side. Lying there against the door I saw that parts were broken away and began looking for my cell phone to call for help. As I did so my friend in the front seat began to scream thinking she could smell smoke. Still seeking my cell phone I tossed aside the tools that had flown from the back storage area and hit me in the head aside. Picking up my phone I heard a voice outside the window. It was a fireman! We had wrecked within a block of the village fire department. In moments there was a flurry of activity. Being unable to extract us from the vehicle without cutting off the top they tossed in blankets for us to cover up with and began cutting with multiple tools finally lifting off the roof. I was the last one to be extracted from the SUV. We were all taken to a Trauma Center and live today with residuals from that occurrence.  Against all odds we rolled in the city from coming in contact with a vehicle going 25 mph. I thought that was impossible. But it is not. It is just against the odds.

 

(The photo is not of our accident – I was unable to take pictures that day)

Sound in a TBI World

via Daily Prompt: Sound

Sound, how does one define something so international and at the same time so personal?  Sound is all about us. In fact, we are constantly in the midst of some type of sound and are very seldom in a void of sound.  For me, sounds can be soothing or they can be the opposite. Since being in the rollover and being diagnosed with a TBI sounds are louder and my ability to filter out multiple sounds in a room to focus on one thing can be quite challenging. For instance at this moment I can hear the wisp of my pressure cooker on the stove, my TV babbling in the background, my computer keys clicking and my canary singing. It used to be that I could block out the secondary sounds and focus on my task at hand. Now, I must turn off something or leave a room to find solace without sounds. How can I have so much on and write? I can’t. I just muted the TV so that I can concentrate.

What sounds are more tolerable? Sounds that are not loud, repetitive, or brash are comforting.  I love to hear the laughter of a child, the song of my bird, the sounds of nature, the sooth music from my radio.  Those things comfort me and aid me in being able to cope in life.

What sounds are bothersome?  The sounds of traffic are difficult for me.  If I hear brakes squealing I panic. Loud banging music is another one. When someone pulls up next to us when I travel and their head banging music is entering my sound zone, my personal space, the pulsation of the beat pains me. It is not that I do not want you to listen to your type of music. It is that your music makes me ill, physically ill.  I need to begin to carry ear plugs with me as that is the only way I know to block it out. A crying baby or an upset child that is wailing is another one. The high pitched sound is hard for me to handle now I have a bran injury. Group conversations are very hard. To try to block out one train of thought to hear another one is not easy. Most often I get up and leave the room as the multiple sources made me shaky and uneasy.  Loud sudden noises now startle me more than ever before. Those make me literally jump out of my seat. Those are the worst.

Sounds are those things that can soothe us or stimulate us. At times they motivate or remind us of something/someone from our past.  For me, in many ways sounds are like they have always been. But in other ways they are so different.  As a TBI survivor I am learning each day how to live a life filled with soothing sounds and how to modify my life when in the presence of sounds I can barely tolerate.  Be patient with me as this is all new to me.  I pray for those of who live with a TBI. May you find solace in gentle sounds as I have.  HUGZ