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. It focus 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.
Imagine being wakened up by a phone call from a hospital at 2 o’clock in the morning on a cold day in December. All they say is to come to the hospital right away. It is your son. What would you do? You don’t know what happened. It would freak me out for sure, but this happened to Mr. and Mrs. Swann on December 23, 1999, with their son Jason Swann. That day would change their lives completely for the rest of their lives.
Mr. and Mrs. Swann had three boys and one girl, and their oldest son was Jason. Now, Jason is a son that everybody wants to have. He had all A’s in high school and played sports like football, basketball, and baseball which he loved the most. Jason Swann had a job working at a local diner in Missouri. He went to church every Sunday with his family. Jason is a person who everybody loves dearly.
On December 22, a group of friends was going out for fun because a childhood friend came home from the military. Since Jason is a great guy, he offered to be the driver for the night. They were coming home from a fun night on a one-way road and a car took a wrong turn and hit his car head-on. The driver of the other car was a nurse who was drunk. They took Jason to the hospital by ambulance and after the doctors looked at him, they didn’t know if he would make it through the night. By a miracle, Jason did survive.
He mimics a Quadriplegic, but he can feel everything. He’s also nonverbal, but he is smart. He talks when someone runs through the alphabet and when they say the letter that he wants, he looks up. This is a long process to do, but sometimes I do this too when I don’t have my iPad in front of me. His mom said he doesn’t have enough control of his head and hands to work a computer.
Back in 2015, he had kidney failure so now he is on dialysis four times a week. With the help of his care team at Fresenius Kidney Care and since his mom is a nurse, they found an at-home treatment option. I asked her why they do it at home, and she said that his body can’t control his temperature at all. So, if he goes out in the summer, his temperature would rise and the opposite would happen in the winter. He doesn’t go out very much.
Jason Swann Loves Life
You must be wondering if he likes life and the answer is yes. He never once complained about being a person with a disability. He loves football so one of his friends or brothers helps him to play fantasy football. Last year he did very well in his league.
A lot of people would say they wouldn’t want to live in Jason’s condition. I would say that he is a very unique man who has the right to live. He has a few nephews and a niece who crawl on his lap and make him laugh. They didn’t know him before his accident so this is the only way they know him. They love being around him and don’t considered him different because he is not different. Yes, he needs help but he is a human being.
Effects on the Family
I asked his mom how Jason’s accident affected her marriage and the family. It affected her marriage greatly and her husband went into depression and after some years they got a divorce. A few years ago, Jason’s dad died. I am noticing that moms have a lot more strength to overcome tragedy like this. I am not saying that moms don’t suffer pain and loss, but they just deal with it.
Jason’s brothers and sister are really involved in his life. All of them are married and their spouses help out with Jason. I know that God has a plan for this family and they met it head on and accept it. My mom always told me when I have a struggle, just turn to the Lord for help. It always helps me.
If you are having a bad day, just think about Jason Swann. I am sure he gets frustrated with how his life turned out to be, but he accepts the cards that he has been given. Maybe we all should do the same.
As a child with Cerebral Palsy, education is really difficult to receive. Schools sometimes overlook the potential of the students and not provide the education that the students need. There is a school that is making a difference with students with Cerebral Palsy. It is named HMS School which is in Philadelphia, PA
How HMS School Got Started
HMS School started in 1882 and was the first institution of its kind and was founded by Helen Innes. She and her husband had custody of a boy with a disability. They had trouble finding an appropriate home for him so she decided to open a home for all kinds of children for free. When Polio was the highest, they took in children who were discharged from hospitals as hopeless cases. She took in 18 children who were provided care for the children with Polio. In the 1960s, they turned their focus on helping kids with Cerebral Palsy and they are still doing that today.
Why is this school unique? Well, they provide education to students who are not getting the right education in their school district. They take the student into their school until the district can provide the necessary accommodations for the students or the students are 18 years old.
Another unique thing about this school is if the student lives too far away from school, the student can live there. In 2007, they expanded the living hall so more students can live there. The students live there during the week and go home on the weekend or just live there all the time. There are personal care assistants who take care of the students around the clock. I think it is so important to provide the necessary services for them.
A child with Cerebral Palsy needs a lot of therapy because if therapy is not provided, the students will have a difficult time learning in the classroom because their bodies will become tight. HMS School has physical therapy, occupational therapy, and speech. They all help the students to be the best they can. They also help the students to communicate with others through a communication system.
Like any other school, they provide art, music, and sports. HMS School puts on plays and has a yearbook club that a student can join. They take the kids out in the community to the museums and other educational places. Besides that, they bring in different people to talk to the students around certain times of the year such as black history month. So, they try to help the kids learn.
When the students get close to graduating, they learn life skills so they could get a job. I don’t know if they could go to college or not. Remember that HMS School take students who are having trouble in the regular schools. Like a parent said that his son had no way of communicating before going to this school. I think communication is so important for everyone because how could a person tell someone what they want.
More Schools Like HMS School
Since HMS School is doing a great job in helping students with
Cerebral Palsy, why don’t other states have schools like this one? That is a
good question to ask, but I guess it takes a lot of money to run. On the other
hand, I am afraid to say this but it is the fault of the regular schools for
not accommodating the student. Yes, being at HMS School is a huge help. Being
in a safe environment like at HMS School is good in one sense but might be bad
too. It all depends on what the students will do after they leave the school.
If you want more information about HMS School, they have a website that you can
go to. It is www.hmsschool.org.
IOS 13 is almost here and iPadOS is coming out at the end of the month. People are getting excited to get their hands on it. I love the new features but the most important feature that I can’t wait is automation with Shortcuts. For those who don’t know what Shortcuts is, it is an app that allows you to make a task to be a push of a button on your iPhone or iPad. I have a button on my iPad to get the weather forecast.
With IOS 13 and iPadOS, you will be able to set up tasks that can be run at a certain time of the day or by a button or NFC tags. What are NFC tags anyway? They are stickers that have a code on them. If you create a certain task that you want to trigger whenever, you put it on the wall. When you want to activate it, you just have to touch it with your iPhone or iPad. It is just like having a button but a lot cheaper.
With automation in Shortcuts, I have a few ideas of what I am going to do first. The first automation will tell me the forecast for the day and then play a playlist. Right now I have an alarm on my HomePod to wake me up. This is good to a point, but I am tired of hearing Siri says “Wake up alarm” for ten minutes. With IOS 13, I can get up to Guns and Roses or something from the ‘80s. That is how I want to be wakened up to.
On a serious note, this next automation will be to text my aides that someone didn’t come on time or I’m sick. This automation will be triggered by an Eve button which will be by my bed. For now, this is what I know will work. The concern is that how will I know if somebody texted back. Siri can read texts to if you ask her to. Since I am nonverbal, I can’t tell Siri to read texts. You can have another button to read texts, but that causes a privacy issue. I understand the fear that Apple has.
Door Locks with IOS 13
There are many things that you have Shortcuts to do for you and one thing is to unlock your door at a certain time. Security is one thing that all of us need in our lives. Some of these door locks have a number pad so you can give your aides a code to get in. If one of your aides quit on you, you can just change the code.
Some of the doors have cameras on them. With IOS 13 HomeKit has capability of storing the video on the iCloud encrypted. The encryption will be done before the video is send to the iCloud. People are not buying cameras because they don’t trust the companies are saving your videos on their servers. With Apple, you might have a better trust in their security. For me, I have more trust in Apple than a third-party company who is new
With Shortcuts automation in IOS 13, the possibilities are endless. To me, I truly believe that it will change the lives for people with disabilities. Right now, people are thinking that this is all fine and dandy, but they are not thinking beyond their comfort zone. Yes, it is scary but you have to try it and see what you can do with it. Technology is out there to use and not be afraid of it. IOS 13 and iPadOS will help us as people with disabilities. I want to know what you think about this technology. Do you think that it will help you?