Surprised By a New PCA

Surprised By a New PCA

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. 

Man in wheelchair talking with a potential aide
Man in wheelchair talking with a potential aide

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 all. 

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. 

Bullying — Can We Actually End It?

Bullying — Can We Actually End It?

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 in high 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.

Technology

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. 

Controlling Bullying

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. 

Bullying -  girl crying

Social Media

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. 

Praying

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. 

Is Cerebral Palsy Linked to Depression?

Is Cerebral Palsy Linked to Depression?

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.

Research Findings

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.

Cerebral Palsy  and depression - a guy sitting in bed looking at his chair.

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.

Some Thoughts

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. 

It’s Time of Giving – How Can We Give the Right Way?

It’s Time of Giving – How Can We Give the Right Way?

It is Christmas season again and a just wonderful time of the year. This season is a time of giving. As a person with a disability, we are usually on the receiving end throughout the year mostly. We have personal care assistants helping us, our family members helping out, and sometimes organizations drop off food time to time. Since it is the time of giving, we should try to give back, so how do we do that?

Giving from the Heart

Most people think that giving requires money. It doesn’t require money necessarily, but it does help. You must be wondering how do we do that? One way is to be nice to others. We can smile more and say thank you often. People do recognize these things and remember them. We often think we have to do things in grand fashion, but it is not the case at all. Actually, people don’t like things in grand fashion.

Just Listening

The next way is to give a person to talk without being judgmental. Last week one of my aides had a serious accident. She was not hurt really bad although her car was damaged pretty much. Her insurance company has not gotten back to her. I know a little bit about insurance, so I can listen to her and give her advice when I can. I am not saying that you have to give advice, but people usually want someone to listen to them.

Home Made Gifts

Since it is a time of giving, we can give small gifts or homemade stuff like chocolate chip cookies or brownies. I know you are saying that you cannot bake but you can get an aide or someone else to help you. If you cannot find someone to help you, maybe have the person who is getting the gift to help you and surprise them at the end by saying these are for them. I think they will love it from their heart.

Be Kind

This time of the year is to give love to everyone. I love the movies on the Hallmark channel and I know they are corny, but if we are that nice like in the movies, this world would be a better place. I know some of you are doubting it, but if we don’t try, how will we know it won’t work. Since it is a time of giving, the movies often show this, maybe we should try to give more from our hearts.

Baby Jesus time of giving

The Perfect Gift

Christmas is a time when God sent His own Son down to earth as a baby. God did not have to do that, but He loves you and me so much that we have to imitate this gesture toward others. Being disabled is hard I know, but it doesn’t stop us from being kind and giving to others.

Believing in Ourselves

When I was working at HSBC, people used to say that I inspire them to work harder from looking at what I was doing. Sometimes I feel we really don’t give ourselves credit for what we do. I know that I’m a part of this group, but we are people with disabilities and we should show our appreciations brightly, so everybody will see.

We have a little more than two weeks till Christmas, so what will you do to show your appreciation to others?

How Do You Determine That You Need Help?

How Do You Determine That You Need Help?

This week I watched the Good Doctor on ABC, and they had a good story that we have to talk about as people with disabilities. There was a mom who had a teenager who had Autism and the dad was not in their lives. She was trying to take care of her son, but he was big and strong. He hurt his mom with force and he didn’t know what he was doing. The question was should he be in an assistive place where they could help him when he acts up. This post is going to look at the bigger question – when should you determine that you need help?

Autism

Sometimes a family thinks that they have to take care of the family member with a disability for their whole life. They think it would be the best thing, but it is not the thing to do. Let’s talk about people with Autism first. A person with Autism usually has behavior issues, which they can’t control it. When they act up, they could hurt themselves and/or other people. This is dangerous for everyone, and sometimes the person with Autism needs professional help.

Safety

Parents usually think that they can handle the issues by their selves, and that might be true, but when does safety override the desire of taking care of the loved one? I think this question is a tricky one. First, there are many questions to answer. Some questions are:

  • Where do we place our loved one?
  • How much money will it cost?
  • What if the love one act up, will they just give them drugs to calm the person?

There are many other questions to answer. I think the doctors don’t look at the big picture. They only see the abuse from the person with Autism. Yes, that is a serious issue to deal with because the person with Autism might hurt himself or herself or a family member. But, the time to find a good place might take some time. Besides, the place might have a long waiting list.

Physical Disabilities

Let’s talk about people with a physical disability like Cerebral Palsy or Muscular Dystrophy. As a person who is growing up, they get heavier and parents most likely can’t handle them. For me, I don’t gain weight easily so lifting was never an issue, but I got tight. As I got tighter, my body is not easy to move like before.

As we talked about Autism, we said that safety is one of the factors for getting help. Safety is also a factor with physical disabilities, but it is not from abuse. It is from not lifting correctly or slipping. Earlier this year, I had a personal care assistant who lifted me wrong and hurt his back. He had to quit. There were other factors that added to his injuries.

PCA’s

With having several aides taking care of you, it makes the work easier on the whole family. One thing that I didn’t realize when my dad was taking care of me was that our relationship was not dad and a son. It was like a caregiver style. I am not saying it is bad, but it is not the same. Even now since I am on my own, my relationship with him is not perfect because when he comes, I usually need something fixed or talk about something.

Life with a disability does not go as planned so relationships will never be perfect. Relationships without a disability are not perfect. I think when you have a disability; relationships are essential because you will always need help. With that being said, I think that there needs be a time when you have to think about the future as a family. It might mean that in five years, you have to change the family a little but that is ok. The talk about the future needs to start now rather than when you are in a financing emergency  https://green-touch.org/business-loans/easy/.

Socialization and Disabilities Have to Go Together

Socialization and Disabilities Have to Go Together

Life needs socialization, and I don’t mean just parties but actually talking to others. We as human beings, learn how to socialize as we are growing up. With people with disabilities especially when they are born with a disability, they usually don’t learn how to socialize right away. Since people with disabilities are behind the eight ball with socialization from the start, how do you increase socialization?

Reason Why

You might be asking why people with disabilities are behind the eight ball with socialization when they are young. Let’s talk about Cerebral Palsy for a moment. When babies start to crawl, they explore everything and anything, besides that they crawl to a family member. That starts socialization. If a child with Cerebral Palsy, they don’t have the ability to crawl so they have to wait for family members to come to them. When a child who can crawl, they make people laugh with what they do. This is difficult for a child with a disability, but it is not impossible. If the child is bright, they might be aware of their surroundings and learn how to interact with somebody.

Play With Your Child

What if your child is not interacting with others, what do you do to help them? Well, you can try to play with them more. If they have a favorite stuff animal, have them reach for it and if they touch it, give them a hug or tickle them. This is like rewarding for doing something good. By doing this, you are doing two things for them. First, you are having them interacting with you. Second, you are having them using their muscles to reach for the stuffed animal. If they have Cerebral Palsy, it takes a lot of time to have their muscles to repeat the action automatically.

Teenage Years

As the child grows up, try to introduce them to new things like camp, boy scouts or girl scouts, or even a neighborhood teenager center. When I was a teenager, my dad took me to a place for teens to hang out. They had a pool table, games, and music. My dad stood me up and held my hands on the stick while we played. Actually, it was a form of therapy, but it was fun too. The other kids were nervous at first, but as I went there more, they began to be comfortable with interacting with me.

Socialization Not Important

You might be saying that socialization is not really important. I think it is and here’s why. If your child has Cerebral Palsy and will always need help with their daily activities, they will interact with others. If they cannot hold a conversation or even acknowledge that someone is with them, the caregivers most likely will quit quickly. There are so many things that go into having good personal care assistants. That is why I created an online course that will walk you through every step of the way to hire someone.

Friendships

Sometimes a person can get them in a rot with others and it might affect friendships. Everybody has bad times because we are human beings with flaws. Recently, I was in a funky mood and one of my aides noticed it and we had to talk about it. That talk really helped me. If somebody does not know how to socialize properly and deal with changes in their lives or other people, it might affect their lives really quickly.

Employment Needs Socialization

What if your child will work when they grow up? Do they have to socialize with others? Of course, they do! It doesn’t have to be a job in the corporate world, but they can be a person who welcomes you at Wal-Mart. Actually, the job at Wal-Mart needs you to be really social because when people come in, you have to say hi to them. In the corporate world, you have to rub shoulders with others to climb the corporate ladder. If you don’t do that and just sit in your cubicle, nobody will remember you when promotions come.

The bottom line is that socialization is very important to all of us. People with disabilities face difficulties with socialization. With learning how to socialize from an early age, their lives will be enriched as they grow up. As a parent of a child with a disability, you really want them to succeed in life and socialization is just one way to do it. For information on how to win the lotto check out Von den Millionen, die niemand haben will – Augsburg – City – stadtzeitung.de