The road to life is not straight. Here, we have to pass through many curves. But some people are extraordinary and have to go through many zigzag paths in life. Yes, I am talking about those who have any physical/mental disability. If an ordinary person faces so many challenges in life, think what kind of challenges a disabled person faces in his/her life when you are different from others, it is difficult for you to live with others. You are made fun of, people look at you with pity. People always think that you are not like them; it means that you can’t accomplish what they can. Are they right? See, this may be their thinking, but not necessarily right.
The truth is that people, who are physically challenged, have a high appetite for success. Therefore if a physically disabled person achieves something, he/she sets a benchmark not only for other disabled persons but also for everyone in society. When it comes to cerebral palsy, it is a disorder of the brain that leads to weak movement, muscle tone, and posture. It occurs in the immature brain when it develops before birth. People with cerebral palsy are not like them whom we see everywhere. These people are special and whatever they do becomes special.
Chris Lenart and his friend Lisa Cesel together authored the book ‘they said we couldn’t’, that is about the lives of two extraordinary human beings with cerebral palsy. Here are 4 things that you are going to get from this book for your life.
Chris says that he was not an ordinary child right after his birth. He has co-authored the book “They said we couldn’t”, where they have described the story of their lives. You will get motivation from this book because they have written down about their accomplishments, challenges, and lifestyle.
The life story of a person with cerebral palsy becomes a guide for the parents of children with cerebral palsy disorder. In “They said we couldn’t” Chris and Lisa have shared all the practical knowledge about how they accomplished success in their life with Cerebral Palsy. Their lifestyle, attitude, and thought process will no doubt help you know about Cerebral palsy.
Many people in this world are facing depression and stress in their life. Therefore most of them are becoming hopeless in life. The book ‘They said we couldn’t’ give you hope when you know how the lives of two amazing souls with cerebral palsy unfold and teaches us how to live.
When you read about the life of Chris Lenart as an advocate of disability awareness, you will come to know what courage is. How he faces the public as a motivational speaker and delivers them the message of love and courage will no doubt fascinate you. You will get the strength in your life to face challenges and accomplish success. More info
When you fly and have several stops to get to your final stop, you feel all dirty and need to change. If you are an able body, you can change in the bathroom without any trouble. When you are a person with a disability, it is really difficult to change in a bathroom stall. In a bathroom, there is usually a changing table for little children, so their parents can change them easier.
Is Adult Changing Table Possible?
Can this be scaled so that a person with a disability can be changed easier? The answer is yes, and Arizona’s government has passed a law on May 7, 2019. This law requires a public building to put an adult changing table if they are building a new building or are remodeling that cost $50,000 or more.
People who have disabilities are human beings and not dogs. They don’t want to be changed on the floor in a bathroom. I hate to sit on the toilet, so I can’t imagine laying on the floor. I know that they try to keep it cleaned, but they cannot clean after someone goes to the bathroom.
A Mom’s Fight
I never thought about this issue before since I don’t need to be changed and I would say most people never thought of it either. How I heard about this was through a mom who I have met at the TASH conference in Arizona. She was the one who worked with the governor to get this law passed. She has a teenage daughter who has Cerebral Palsy and has to be changed.
Some people would say that this law is silly, but I have a question for you to think about. If there is no adult changing table for your teenager or yourself, would you take them out in public knowing that they might have to be changed on the floor of a bathroom? You might say that you will stay at home to be safe.
Is it fair for your teenager or yourself? I don’t think so because you have the right to go out to enjoy life. Your teenager or you should not feel sad that you have to be changed. It is a part of life and I know it feels awkward, but you should not stay at home.
Requirements of a Changing Table
The requirements for a changing table are the following:
Must be able to hold at least 350 pounds
Have to be placed where the caregivers can safely and have the room to help the individual
Must be designed to accommodate people with disabilities, children, babies, aging population, and the individuals who use a catheter
Doing the Right Thing
This is not a long list of requirements, so this should be easy to provide, but there will be some people who will say it will cost a lot to money. My reply for them is so what because if you do the right thing, you will get more people coming into your place. It is a wise decision to spend a little more money up front and get a load of money later. It is because people will come back over and over. That is why good companies survive and bad companies do
It is so fun to know what your I.Q. is and we sometimes ask our friends what their I.Q. is as a joke. What are these statistics for and does it have any importance for how smart we are? I will answer the latter question first. The answer is no. There is no evidence that shows how smart someone is. If I were to make a new test to know how smart someone is, it will be good as the regular test is.
Who Developed I.Q.?
Now for the answer for the first question, it was used so Hitler could get rid of people with disabilities. We only think he was targeting only Jews, but it is not the case. It was used to weed out all the people who had an intellectual disability. There is a great movie called “Intelligent Lives” and it is on Amazon Prime. It talks about how I.Q. got started and shows how people with intellectual disability can become an asset to society.
Partners in PolicyMaking
We often live in our own world and don’t see what is happening. For those who are not getting my newsletter, I am in a class called Partners in Policymaking which every state has. This class is for people with disabilities and parents who have children with disabilities. It meets for two days in a month for nine months and this past weekend we had the class. The topic was education. One of the subjects was on Positive Behavioral Interventions and Supports or PBIS.
What is PBIS? It is a framework for the school to adopt and it is mainly for the staff. Itfocus on the behavior of all the students. Many students don’t need help in school, but some do. The teachers are trained to help the students before they have a meltdown. The reason why they want to catch it before the student has the melt down is because if they can help the student early enough, the student can be calm down faster. Otherwise, the student cannot function in class.
Example of How PBIS Helps
One student had stress and some days they were in a good mood and some days they were in a bad mood. The school figured out that it started first thing in the morning. What they did was every day the school would called the students at home to see if they were having a good day or a bad day. If they were having a bad day, they would see someone who could calm them before going into class. As the year went on, the student learned how to calm themselves without needing help.
Like I said that this framework is for everybody in the school to adopt. There are three tiers in PBIS and each tier aliens to the type of support students need. Tier one is for everyone. The school is structured to have positive expectations and behaviors. One thing that got to me is they focus on is respect for everyone. To me, this is really lacking in this country.
Each tier gets smaller as the tiers increase. So, when they get to the third tier, the number of students is much less. If a student is in the third tier, there is a multi-disciplinary team for each student. The student has a behavior support expertise and formal fidelity and outcome data are collected. In the third tier, there are usually 1-5% of the students. This number of students is something that the school can handle.
Think Outside of the Box
The question that comes to my mind is why don’t more schools have PBIS? This framework is for everyone. Yes, this works for students with disabilities but let’s think outside of the box now. There is a lot of bullying at school but there are many unwanted shootings in schools. To my mind, PBIS might be one way of stopping the violence in schools. I don’t mean it will be the final answer, but let’s try something that might help everyone. Students need the support that their parents can’t provide and this might be one way that can save lives.
What if your case manager just changed your primary personal care assistant (PCA) agency on you without telling you, what would you do? If you are not familiar with me, I live on my own in a building called Katharine Manor Apartments. I hire my own aides and pay them. So, I don’t have a case manager, but a lot of the residents do have a case manager. Some of them have the same case manager and one day they received new PCA’s from another agency.
What Would You Do?
What would you do if you woke up seeing a complete stranger in your bedroom? I know what I would do. I would crap in my pants and hope that I was having a bad dream. About five residents experienced this shocking event. If this happened to me, I don’t know what I would do because I am nonverbal, so the person has to know how to communicate with me. All the residents, who were affected by this tragedy, could talk. That is one good thing.
This has been several days since the change has taken placed and proper training has occurred. Most of the residents are still not happy about this change and are fighting it. The staff here at Katharine Manor found out at the same time as the residents. They were dumbfounded as well when they found out too.
Reality Set In
Now let’s just talk about this in general terms. Was this right at all?
The answer is obviously NO! It was wrong on so many levels. How they found out
was appalling. Some of the residents found out the night before. I could see if
the staff here at Katharine Manor were on strike, but they weren’t on strike at
If this happened to you, what would you do? To me, it is so crazy to think
about because you are in a building where you are taking care of and you trust
them to take care of you every single day. The trust should not be broken at
all. If one of my aides is late, it is one thing, but if they don’t show up at
all, would I keep them? The answer is no. It is the same thing here, but who do
you get mad at? Your case manager or Katharine Manor? The answer is so
difficult to say because the case manager works for the state. If Katharine
Manor fought with the case manager, the state could just close the whole
building. This was on the board’s minds when they found out.
Who to Blame
The case manager was completely at fault. We are all human beings and make the wrong decisions throughout our lives. I am not here to say that this person needs to be let go. Maybe the person heard something and felt that he or she had to “save” the residents from something. I don’t know what really happened, but one thing that I know is this should not have happened.
We as people with disabilities need people who can look out for us. When I was a lot younger, I thought I could handle everything myself, but as I get older, I am noticing that it is better to have somebody to look out for us. I am not saying that we cannot do that ourselves, but it is to be safe than sorry. If you have your own thoughts about this, please tell us. There is no wrong solution to the problem.
These days bullying is getting worse and it is not improving. Bullying is not new – it’s going on for decades. My dad was bullied when he was a teenager and he is almost 90 years old. In his time, kids did it for fun and would forget it. Today kids can do more damage than in dad’s time or even my time.
I Was Bullied at School
Yes, I have been bullied inhigh school, but it was not like today. I had my second power wheelchair and I was not good at driving it especially when the halls were jam packed with students. Naturally, I got the finger and was called names. After the moment, it would be forgotten. That was what I remember it to be.
With technology growing, bullying is seen by more students than ever before. When I was in high school, one or two students would see it and the other students really didn’t care what happened. Today students have their phones in their hands, so it is easy to take a picture and send it to others. Rather having a good few students seeing it, now you have a few hundred students or more seeing it. The incident has grown into a big mess. It just happens with one button press.
13 Reasons Why
I just watched the series on Netflix called “13 Reasons Why”. It is about a teenager girl who took her life after been being bullied. Before she killed herself, she recorded what made her to do it. It was not just one thing that lead her to do it, but it turned out that many things caused it.
When I watched it, there was one thing that came to my mind, and that was, where was God in all of this? He was nowhere to be found. The jocks were using the girls all the time. They didn’t know what rape was. Besides the parents were not involved in their kids’ lives. When the kids said they have to go somewhere, they just let them go.
What can we do to lessen bullying? Some people want to eliminate bullying all together, but in my opinion, that won’t happen. You can ask why not. It is because we are all human beings and have flaws. You then can ask how do we slow it down.
First of all, get involved in your kids’ lives. Don’t act like you know your kids very well. Ask them the hard questions and listen to their answers. Also, you have to watch their bodies because when they lie, you can notice it. Another thing is to have dinner together. I don’t care if it is only one night but have it on your calendar. If something comes up, tough. Family time is so important that it cannot be canceled.
Parents should be on their kids’ social media or don’t let them have it at all. I am sure that some parents would say that I am cruel. I would like to be cruel and still have my kids safe. In the series, the parents of the teenage girl didn’t know her at all. Why was that? There was no communication between them. Yes, kids do need privacy of course, but they also need guidance. When I got my condo, I was 41 and the first few years, my dad watched me like a hawk with my money and what I was doing. I hated it a lot, but it did help me to be a better person with money. I am not saying that I am awesome with money, but I can control it a lot better.
Teenagers with Disabilities
What if one of your kids has a disability and is being bullying, what do you do? Your teenager might have a mild case of CP and walk around with a limp. That limp is the cause of the bullying because students are calling your teenager old man or old woman. You are thankful that they can walk around but at the same time, you know your teenager might lose their want to walk. What should you do? I would keep giving them the confidence to walk. The bible says that life is a race and we have to cheer each other on. My mom always cheered me on no matter what happened. To me, that helped a lot and even now I can hear her cheering from heaven.
If you still see your teenager struggling with the bullying, you should go to the school, and talk to them about it. You are your teenager’s voice when it comes to bullying. I think that all parents should be a part of their kids’ education and I don’t just mean if they have a disability. I talk about this a lot in my talk about education because it is really important.
Another thing that is a must, is pray for your kids. I know it sounds a dumb idea, but it really helps. Knowing that your kids are in God’s hands and will guide them through the rough times. With God by their side, they will be safe and overcome the hurtful comments they hear. Sometimes I feel if we can get back to morals and respect, most of our troubles will go away. If you don’t think that, I challenge you to try to change your life and see if it makes a difference. I know it is really hard, but I see a difference in my life.
Bullying is not just for kids, but it happens to everybody. You might not think you are bullying other people. Sometimes we are looking at life through rose color glasses. We have to see look how it really is. Yes, it might be really hard, but we have to see the truth in us so that we can change. Take a few days to reflect on this post and then try to make the change that you feel is necessary. Remember one thing and that nobody should be bullied ever.
The United Kingdom has done research on adults with Cerebral Palsy and depression. They say there are a higher number of people with Cerebral Palsy and who have depression than other people. They seem to be trying to link Cerebral Palsy and depression together.
Before I go any further, let me make it clear that I am not a doctor and this post is just my observation through my life and see what God has done in my life. I also know somewhat life in the United Kingdom is like by watching videos and reading articles on the internet. With that being said, I am not saying this is going to make sense or not.
In the article on “Cerebral Palsy News Today”, they reviewed some findings that were published in the JAMA Neurology. Researchers showed that living with a long-term disability such as Cerebral Palsy is associated with a wofold to threefold increase in the likelihood of having depression or anxiety. Since Cerebral Palsy happens around birth, it is a long-term disability.
They used 4.4 million people in this research which was 7% of the United Kingdom. This population was gathered from 1987 to 2015. From this population, there were 1,705 adults with Cerebral Palsy and 5,115 adults without CP. They found that depression and anxiety occurred in 19.6% and 16.2% of adults with Cerebral Palsy and without intellectual disability compared to 17% and 13.4% in the matched control. The research also showed that people with Cerebral Palsy and an intellectual disability had a lower risk of having depression or anxiety. There was 13.3% and 12.2% compared to the matched control which was 16.6% and 14.3%. The article said that they have to do more research to understand why.
Depression and Anxiety
There is an abundance of depression and anxiety around the world. Everybody seems to know someone who has depression. It is getting worse as the time goes on. I have an idea of why this is happening and that is the family is falling apart and there is no support within the family. So, nobody is helping each other. Years ago, the family would have dinner together and discuss the day.
Decrease of the Family
Today the family is running the kids off to practice so they have to pick up dinner on the way. The conversation is not happening at all. Kids are seeing a lot of things at school that they should not see. They don’t know if it is good or bad because the parents are not teaching their kids at home. They are relying on the school to teach them. Who knows what the school is teaching them? Are they teaching something that is against your beliefs? The parents are not looking at the homework that their kids have because they sometimes don’t have the time to look at it. It makes me sad because my parents helped me to learn. Naturally, they had to help because I couldn’t turn the pages, but there were a few times that I didn’t want to study anymore. They encouraged me to push on.
Doing Away with God
Another thing that is missing from our lives is God. People can say that God is not real. I see signs in my life that shows that God is real, and I have a purpose in life. If you do not have a purpose in life, what helps you to get up in the morning? That’s right – nothing!
UK and US
In the United Kingdom and in this country, the government wants to break up the family and turn their backs on God. Why are these things happening? If the family does not exist, people will be more like robots which do things that someone tells them to do.
People are not robots and we want the love of the family to help us to grow. The United Kingdom population is not growing as it should. If there is no growth within the family, the individuals will get depressed and don’t see a light at the end of the tunnel.
The research shows that people with Cerebral Palsy have a higher chance of getting depression and anxiety. Let’s just talk about facts. People who have disabilities don’t get out and socialize. They rely on people visiting them. If the family is small and is not bonding together, the person with a disability is alone a lot. Naturally, the person will get depressed. When I don’t have company over, I get depressed, but it is not caused by my Cerebral Palsy. People need other people who love them around.
To say that Cerebral Palsy and depression are linked together, it is ridiculous. I think we have to look at why the family is running falling apart. Just maybe we could help people with depression. Taking drugs will help so much and we will not get to the root of depression. We know that there is an unbalanced chemical in the brain. Our amazing body can help itself if we give it the love that we need. I am saying that this is my opinion and I can be way off base, but this is what I believe in. If you have a different opinion, please leave it in the comments below.