Accessible Parking

 

Accessible parking spots enable people with disabilities to stay independent. They can go to the store or run errands on their own relying on others to do it for them.Accessible parking spots are not just for people with visible disabilities like those who use wheelchairs, walkers, canes or have limps. I have seen many people get upset with people who use an accessible parking spot because they aren't using a device or don't have a limp. It's important to understand that we don't know them. We don't know what they are going through. Many people have what's called a "hidden disability". It's a disability that no one can tell they have because they don't use an accessible device or have a limp. It is a disability like chronic pain, heart conditions, lung issues impacted their ability to go long distances etc. It's important to let them be. What they are going through isn't our business. It's between the person and their family and their dr's. For all we know they could be embarrassed that they suddenly have to use an accessible spot because of a new health issue.

Bullying and independent living

A big part of independent living is bullying. Bullying is when a person or group uses physical harm, hurtful teasing or threat, to abuse, dominate or intimidate as well as persuading someone to do something by using force or threats. It is intended to hurt another individual, physically, mentally or emotionally. Who are the victims? Boys, girls, men and women. Often times people think of school age (in the schools, or on the playground) when it comes to bullying. It is much more. It is out in the community and even in the workplace. It happens to adults too. For adults it often times can be in the workplace or even at home. Signs of adults being bullied, can be lost of self worth, loss of interest, increase health problems, decrease in job performance and even thoughts or acts or hurting themselves. What are the signs in children? Unexplainable injuries, lost or destroyed items, feeling sick or faking illness, changes in eating, difficulty sleeping or frequent nightmares, declining in school performance, loss of interest, or not wanting to go to school, sudden loss of friends or avoidance of social situations, feelings of helplessness or decreased self esteem, self-destructive behaviors such as running away from home, harming themselves, or talking about suicide. When a person is being bullied ALWAYS take it seriously especially when a victim says it is happening. It is very difficult for a victim (children and adults) to admit they are being bullied for fear of retaliation, being ignored or told it will pass. For children keep in contact with the school teachers and staff, or other adults if it is occurring outside of the school about the situation. For adult victims tell them to talk to someone like a person in Human Resources when its at work or a counselor. If it happens at work tell them to document and even send emails to HR so they can keep track of what's going on.

Volunteering

A big part of independence is volunteering.  Volunteering helps with self-confidence and future employment as a person works on independent living.  Many people think volunteering is just helping out at a food pantry or soup kitchen. Volunteering is so much more. There are so many other ways to volunteer. How do you find ways to volunteer? Go to your county, city or town website, a hospital website, school district website or nonprofit website and see if there are any volunteer possibilities. One thing I love to do is join local and state boards of directors and committees for nonprofit agencies. When I do that, I volunteer my time to help people and make sure their needs are being met. Even if you simply attend a board or committee meeting as a citizen to talk about a concern is volunteering your time. You are advocating for people they serve who may not have a voice for themselves.

For me, volunteering on boards and committees via the computer is a great way to work on independence if I am dealing with health issues and am unable to hold a paying job.

PARAEDUCATORS IMPACT ON INDEPENDENT LIVING

Schooling is a big part of a person's independence. Section 504 of the Rehabilitation Act requires schools to provide needed accommodations and modifications to students with disabilities to enable equal access to education. Individuals with Disabilities Education Act (IDEA) requires that students with disabilities receive free appropriate public education specific to their needs.

Disabilities that students have vary and can include learning disabilities, physical disabilities, intellectual disabilities, communication disorders, emotional disabilities, developmental disabilities, etc.

It's important to understand that not everyone with a disability requires the same accommodations. For example, not everyone with a learning needs the same accommodations, not everyone with a physical disability (for example spina bifida) needs the same accommodations and not everyone with autism needs the same accommodations etc.

Often times enabling a student with a disability to have equal access to education requires having a Paraeducator in the student's classrooms. Paraeducators can be a crucial part of a student's education. They don't just provide one on one service to their student(s) teaching a specific subject. Paraeducators have many different roles. A paraeducator may work in special education classrooms, resource rooms or in mainstream classrooms.

Each student has different goals. Their goals are identified in their IEP’s (Individualized Education Program). The assistance that the paraeducator provides varies from student to student based upon those goals. The goals often times include adjusting lesson plans to meet the student's needs, providing social and emotional support, providing physical assistance as well as many other things.

When paraeducators work with their student(s) in the mainstream classes they often times work with students who don't have disabilities. They may need to work with other students to redirect them and keep them on task at the same time they are working with their student(s) on de-escalation when they are upset.

Equity and People with Disabilities

I decided to become a social worker and ADA coordinator because I wanted to work with individuals with disabilities on independent living. I wanted to work with people on self-confidence teaching them that they CAN be contributing members of society. Disabilities have always been a big part of my life. Not only do I use a wheelchair, but I have learning disabilities and epilepsy.

When it comes to enabling people with disabilities to be contributing members of society you don't need to think of just equality. It isn't just making sure places have ramps etc. It is both disability equity and equality.

Equality is having the same resources or opportunities for everyone, no matter what their individual needs are. Equity is understanding that there are individual differences and providing resources to meet those specific needs. Disability equality is ensuring that people with disabilities have the same rights and opportunities as people without disabilities. Disability equity addresses barriers and provides additional support to those with disabilities. Equality might lead to unequal outcomes if individuals have different situations. Equity seeks to achieve fair outcomes. Equality might mean everyone receives the same things whether they have a disability or not. Equity would provide additional resources enabling equal outcomes. Equity may require listening to individuals with disabilities to understand their unique challenges and needs. Understand that equity doesn't mean a person with a disability isn't looking for handouts. They want the same opportunity as everyone else.

ACCESSIBLE VOTING

Through the history of our country people with disabilities weren’t thought of with voting rights. The laws that were passed didn't include people with disabilities. Even though some laws were passed like the civil rights act making sure that minorities had equal rights based on race, gender etc., it didn't include people with disabilities.

Many laws didn't say people with disabilities officially were not allowed to vote (although some laws though history did say people with disabilities couldn't), they just couldn't because voting places or voting ballots were not required to be accessible. When the ADA was passed in 1990 part of it included voting. Accessible accommodations protected by law include:

Allowing someone to help you vote (cannot be your employer or union representative)

Providing handrails on all stairs at the voting locations

Accessible parking at voting places

Voting and election materials in large print

Entrances and doorways at the voting location that are at least 32 inches wide

Wheelchair-accessible voting locations, both inside and outside

At least one accessible voting device at EVERY location. These devices help voters who are blind, visually impaired, or have other accessibility needs.

Allowing service animals

Poll workers to help you use accessible voting devices

***Drop off boxes are also required to be accessible for people with disabilities.

If you have any questions contact your local election office. The information should be on their website as well.

Budgeting

Budgeting is a big part of life and a person's independence.  It can be overwhelming to anyone.  This is especially true if you're just starting to learn how. 

You can start by understanding and defining what budgeting is.  I try to keep the definition simple.

Budgeting can be summarized in two things:

1.  Understanding how much money we have

2.  How we spend your money

That may seem like common sense but not necessarily, especially when we're stressed out overwhelmed with just the idea of budgeting.  By keeping it simple it makes it easier to do one thing at a time.

Even though there are many ways to spend our money during a month, what it really comes down to is wants and needs

Independent living involves figuring out the essential monthly expenses first. Once you figure those out then you know how much you have left over for other things we enjoy like doing things with friends etc.  Many times people don't realize that then they run into trouble because they don't have enough money to pay for essential things like rent.  

I have a budgeting sheet I give to students working on independence.  This is to put on the refrigerator.  With technology you can just put them on your phone calendar and or computer as a reoccurring event on the due date.   

Not everyone has the things I have below.  The idea is to list things that fit you specifically. 

1. Rent or mortgage                Due date

2. Utilities                                  Due date

3. Groceries                              Due (N/A)

4. Secured debts                       Due date

5. Child support                        Due date

6. Auto insurance                     Due date

7.  Medical insurance              Due date

8. Prescriptions                        Due date

9. Transportation (bus tickets, pass, gas) Due

10. Phone                                  Due date

bullying

 https://www.facebook.com/groups/SPEDHomeschoolResourceSharing/permalink/1194043131370432/

Bullying interview

https://www.youtube.com/watch?v=N-GZ2Gwca7k

Rider Spotlight: Dave Carl, Advocate, Volunteer, Author

 Created: 19 November 2021

You don’t always have to look far to find everyday superheroes; sometimes, it’s the person sitting next to you on the bus. C-VAN rider Dave Carl is one of them. He may not have x-ray vision or a fancy costume, but he has the passion and drive to do things that others may assume he cannot. Dave has spina bifida and uses a wheelchair. Those who don’t know him may see his chair and underestimate what he is capable of, but you’ll find that they are putting limits on him that don’t exist. Dave’s superpower is that he knows what he can accomplish and is his own best advocate.

Dave is the author of two children's books: Super Cyclist Saves the Day, and Super Cyclist Battles Stinkball Man. The hero of the books, John, uses a wheelchair. In the books, John feels a calling to fight crime, but he is used to people telling him what he isn’t capable of due to his disability—sound familiar? Throughout the books, John casts aside the ideas that others have about him and his abilities and works relentlessly toward his goals. The books show children that even if their path to their goal isn’t the same as everyone else’s, they can still do great things and should believe in themselves. Dave also puts his writing skills to use on his blog, shareindependentliving.blogspot.com. The blog is a spot for him to share personal experiences and resources surrounding independent living. Dave graciously agreed to chat with us about his projects and his very personal connection to them. 

Would you mind telling us a bit about your disability and some ways that it impacts your life?

I have spina bifida, and I also have a seizure disorder. As somebody with spina bifida, I use a wheelchair full time. Actually, with the seizures, when I was in high school and college, one thing that affected my ability to concentrate was reading, so I actually had to have everything read to me, which is why this [writing books] was such a big thing for me to do.

Do you remember how old you were when you noticed that people treated you differently because of your disability?

Well, I first remember, probably middle school. That was probably the roughest time with getting bullied, and things like that. Before that it was just who I was, I still did the activities that my siblings did and stuff like that.

How did you get into writing?

First it was something more to do if I wasn’t feeling good. If I had a long hospital stay, it was something to do. It was just general writing. Writing stories, maybe kind of a journal, diary type stuff. Eventually I started writing down more fictional stories. When I started out as a social worker, I decided to make it more into stories to help other people. Because independent living is my focus as a social worker, I thought I may as well help kids on their way toward independence, to start with young kids on their self-confidence. 

What similarities do you share with the hero of your books, John?

I would say number one that I’ve always used the wheelchair, but also, a lot of times, the things that he does on a daily basis. I tell people that I can do things. It’s very common for people to come up to me and say I feel bad for you because you can’t do certain things—you can’t play sports, you can’t work, you know, all of these things. That’s something I’ve heard my entire life, including adulthood. That’s one thing the main character has to prove, is that yes he can, he can do things other people can’t do. Part of it is overcoming obstacles and proving to yourself that you can do the things you want to do, which is the big thing that the main character has to do.

Is there any other part of your life that has inspired your books?

A big inspiration is what I see as a social worker, because I see a lot of people, I work with a lot of people who are very big inspirations to me. I see them and it’s like, “Oh, wow, that is pretty cool that they do that.” A lot of times people will say, “Oh, that’s so cool,” and they’re the ones that showed me. Everybody has ups and downs in their lives, and it’s like wow, it just helps me. You may think I’m the one helping you, but you’ve helped me. You have shown me that even if things aren’t great, I can still do it, it takes time. Another thing would be from my family. My family has been huge when it comes to teaching me that it’s so important to see myself and my abilities before the wheelchair. Those are my earliest memories, my parents fighting for me, and they taught me to fight for myself, and to become my own best advocate. All of my writing has to do with self-confidence, with believing in yourself, with understanding just because somebody says you can’t do something doesn’t mean it’s true.

You have a blog where you focus on independent living. How has C-VAN helped you live independently?

C-VAN helps me a great deal because number one it enables me to get to work. Instead of everyone having to drive me to appointments, to the store, I have the independence because of C-VAN to do these things on my own. It teaches me not only do I have the ability, but it teaches me how to do it, it teaches me how to make decisions, how to ride transportation, how to access transportation. Without C-VAN I would not have any of these skills, I would not have any of these opportunities to access all of these things independently. That’s what I teach is when it comes to independent living, it’s not just living on your own. It’s decision making, it’s self-confidence, it’s accessing resources. All of those are different aspects of a person’s independence. That’s why C-VAN is so important when it comes to my own personal independence.

Do you have other local resources you would like to point people toward who are interested in independent living?

I’m actually the Board President of PEACE which is Parents Empowered and Communities Enhanced. It helps families of people with development disabilities and individuals with developmental disabilities themselves to access resources and to overcome obstacles and things like that. One of the things I do on the board is co-teach a Building Independence class which is every Thursday night over Zoom.

What is the main thing that you hope children take away from your writing? 

The main thing that I hope is that people understand that just because someone says that you can’t do something doesn’t mean it’s true, and that you need to follow your dreams. Those are two very big messages that I’m always trying to give to kids. Actually on the back of my book that’s a quote, and it's a very big message in the book. 

Is there anything else you’d like people to know?

I just love to let people know that it’s important for people to see themselves before they see their disability. It’s important to see your abilities before you see whatever problems are going on in your life.

                                                         Decision making

When it comes to decision making, many people don't realize the impact it has in our lives and independence.  Many think that decision making is only major things like deciding where to live or work or maybe decisions that have to do with health. 

Our lives are full of making decisions.  Even the small things in life are decisions.  It's common for people to not see them as decisions instead "living life".  When we decide what to wear, what to eat whether to ask for help or accept help etc.. Those are decisions. 

In other words we have more experience than we think.  Use our experience to make bigger decisions. Below is a general way to make decisions:

Define the issue - does it need action? If so, now? Is the decision urgent?  

1. Gather all the facts and understand their causes.
2. Think about or brainstorm possible options and solutions.
3. Consider and compare the pros and cons of each option - consult if necessary - it probably will be.
4. Select the best option
5. Explain your decision to those involved and affected, and follow up to ensure 

My next book is finally done! After waiting for 10 years!!! Some of you know my first book was originally published in 2010 and redone last year.

Super Cyclist goes to his next adventure protecting the city while continuing to teach children the importance of believing in themselves.

Super Cyclist Battles Stinkball Man

Super Cyclist Battles Stinkball Man Super Cyclist Battles Stinkball Man

30th anniversary of the ADA

Today is the 30th anniversary of the passing of the ADA (Americans with Disabilities Act).  I was 15 years old when it was passed.  I have to say that it has had an enormous impact on my life.  I was born with spina bifida and have always used a wheelchair.  When I was growing up in the 80's I remember times when I was either unable to go places due to inaccessibility or had to rely on family or friends to carry me up steps to access things everyone else could.  Even sidewalks were not accessible due to the lack of curb cuts.  One of the reasons I learned how to do wheelies in my chair was so I could go up and down curbs due to the lack of curb cuts or businesses with a step at the entrance.  When I graduated from high school in 1993 and went to college the ADA was still relatively new.  Many businesses, schools, curb cuts and other services were not accessible yet. Since I didn't always have people around to help like I did when I was a child inaccessibility and segregation more noticeable to me.  

Since then I have noticed the wonderful impact that the ADA has had on my ability to access things and be a contributing member of society.  I have had the opportunity to watch communities improve.  Places are more accessible and attitudes toward people with disabilities have changed for the better. Of course it has also shown me how much work still needs to be done.  It has shown me that some segregation against people with disabilities still exist.  Not only do communities still lack physical accessibility but  people with disabilities still lack access to things like adequate health care and adequate health insurance.  As a social worker and a Certified ADA Coordinator I hope to continue working on the wonderful progress that our country has made toward inclusion for people with all disabilities and hope to continue to work on fixing the problems that still exist. 

Having a Support Network

Having a support network is very important.  It doesn't matter if you have a disability or not.  

When I started living on my own I thought that independence was living in an apartment by yourself or with friends and making decisions on your own.  As time went on I noticed life is full of times that we need a support network.

For me this includes times I am dealing with medical issues, financial issues or even times I just need someone to talk to and support me when I'm feeling down.  I also started to realize that I already have one.  I have family, friends and doctors etc. 

The people I have in my network have different roles.  For example I wouldn't necessarily go to my doctor for financial or emotional support and I wouldn't necessarily go to my friends and family for medical advice unless they are doctors or nurses themselves etc.

Support networks are different for everyone  Sometimes it may be a caseworker or a counselor to support you with financial issues or housing or living situations just to name a few.

Things To think about with support networks:

1.  Emergency: this can include ambulance, police

2.  (General support: friends and family)

3.  Medical: this includes all of your doctor, pharmacy

4.  Finances

5.  Counselor Or Caseworker

When setting up a support network it is important to put things that enable you to contact them. This includes the NAME, NUMBER and sometimes ADDRESS

Putting your support network somewhere that you can see or easily access is very important.  Ideas include on the refrigerator and in your cell phone and/or your iPad.

John has always wanted to become a crime fighter - But when friends mocked his dream because he uses a wheelchair he refused to give up. He works day-in-and-day-out at growing strong and smart. He proves everybody wrong. Super Cyclist is a book for every child who, like John, holds tight to their dream of becoming more than their physical limitations.

https://www.amazon.com

podcast interview: Independent Living on a personal level

I was recently interviewed by Roni Sasaki.  She is a skier who competed in the 1992 Paralympics. During the interview we focused on various things through my life that I have faced and overcome.  I have attached the link below
Dave Carl

http://www.ronisasaki.com/podcast/18-a-leg-up-on-life-dave-carl

Setting Goals

                                                      Setting Goals


*everyone can achieve goals no matter what their situation is!*


1. Ask yourself what do you want to accomplish?
EXAMPLE: I want to become more active


2. Describe the goal: what does the goal involve?
EXAMPLE: I want to be able to get out and do things instead of being inside all day  watching TV.

3. List the “mini goals” that need to be met to achieve the goal.
**I say "mini goals" instead of steps because there are times in life when even the simple steps   
    are not easy to do and therefore are goals themselves.**

     -mini goal example: I will make a list of activities I enjoy doing.
        -by Monday

     -mini goal example: I will look up the names and contact information for places in   
      my area that provide the activities I am interested in.
         -by Tuesday

     -mini goal example: I will contact the places that provide these activities of interest     
      and ask for a description of what they do, as well as when and where they meet.
         -by Friday

     -mini goal example: I will check to see what transportation is available to attend the     
      activity.
         -by Monday

     -mini goal example: I will set up transportation to and from the activity.
        -same day (the day before if public transportation)

4. Below each "mini goal" write a date to accomplish it

5. ATTEND THE ACTIVITY

Workplace Communication Tips for People Living with Disabilities

 

Through my career I have seen the progress of people living with disabilities in the workforce who at first had very low self-confidence and communication skills. Many knew what they wanted but did not know how to ask for it or did not have the courage to ask for it.
It is important for employers and co-workers to understand that someone with a disability can be just as capable in the workforce as anyone else, but this understanding must begin with the individual living with the disability. I have a very obvious disability because I use a wheelchair, but I also have a few hidden disabilities as well, including learning disabilities. In my experience as a social worker and job coach, people living with hidden conditions like learning disabilities and who are entering the workforce after some time away, may need to work on their self-confidence, without which they may hang back from sharing with others. On a personal level, I had a hard time talking about one of my challenges—severe epilepsy which at one time affected my ability to concentrate. Through time I have learned how to work with my hidden disabilities so I can ask for appropriate job accommodations, while at the same time helping my clients find the accommodations they needed in order to be effective workers.

Employment is not something that is easy for everyone but you.

It is very common for everyone—whether you are an individual with a disability or not—to feel uncertain about themselves and not very confident in the workplace. This feeling of uncertainty may linger, making someone with a few extra challenges have a hard time trusting others or believing that they are wanted. One thing it is important to realize is that you went through an interview just like the others and obviously there are qualities that your employer saw in you just like they saw in your coworkers. People whose life experience has been very difficult often hear—and remember—negative feedback much more than positive feedback, which they may not notice at all. Learn to challenge these feelings of self-doubt by paying attention to positive communication or remembering you were hired for a reason.

Good work communication requires both talking and listening—most people have to work on at least one.

If you are getting a job for the first time, understand that good work communication is hard work for even the most experienced member of the workforce. It requires speaking clearly as well as listening and processing information. Some people who are good listeners may be unable to ask for help when needed or find that their talents are overlooked. Employees who are good at talking may make mistakes because they didn’t listen closely to a set of instructions.
Like many of the issues that affect workers living with disabilities, communication differences are often minimized when employees talk to someone—a supervisor, a human resources worker— about their specific needs. Being upfront about something and providing a solution shows that you are aware of an issue and willing to improve. It can also reduce some of the worry or shame you may feel about something that is not a big deal. Some examples are: “I get a little nervous speaking in front of people—can I try out my presentation in front of someone first?” or “I heard your instructions, but would you mind writing them down and e-mailing them to me—I’m a visual learner.”

You don’t come to work to make friends, but you can’t be an effective worker without allies.

One of the first things I reinforce to new and returning workers is good personal boundaries. People who tend to be shy or anxious may be worried about the uncertainty of a new job setting—meeting all those new people after spending most of their time within a small support network may feel like a big stretch. For others, I need to teach the difference between the kind of friendliness expected between coworkers and the relaxed friendliness they might share with family and friends. It takes some finesse to know which coworker expects nothing more than a friendly good morning and which people are open to a short chat about an appropriate topic. There’s nothing wrong with asking someone—a coworker you trust, a friend or family member—for feedback on an interaction you weren’t sure about. Remember that every workplace has different expectations, so you aren’t the only one that has to learn the ropes.

Learn from setbacks.

Frustration is another area that will affect you from time to time, just like any worker. For someone who has low self-esteem or feels unsure on the job, one mistake can seem symbolic of a larger fear. I tell people that letting, “I didn’t do this one thing right,” turn into “I can’t do anything right,” makes it that much harder for you to pick up and try again. Instead, work on correcting the situation and remind yourself that everyone makes mistakes—not just you. If you get frustrated with a coworker, it is important to talk to the person in a calm way without showing anger. Learn about the chain of command and find out who are the appropriate supervisors to contact when you have a particular type of problem you can’t handle yourself. Above all, taking a moment to de-escalate and get some perspective is always a better idea than reacting impulsively.

Know your rights.

I recommend to my clients that they tell employers about any job accommodations they might need once they are hired—not necessarily during the interview. This is another example of something you need to take the lead on—most employers are not likely to ask you.
An employer is required to provide a reasonable accommodation to a qualified employee with a disability unless the employer can show that the accommodation would require significant difficulty or expense.

Here are some tips to help people—even those who have been working for a long time— who may have a difficulty communicating with supervisors about accommodations.

• It is reasonable for you to talk to you supervisor about your concerns. Ask for a meeting with him or her to talk about what you need in order to do your job to the best of your ability.
• While you are within your rights to ask, remember that you are still dealing with your boss and that a pleasant request works better than a demand.
• Your workplace is within its rights to ask for documentation such as doctors’ notes confirming that you need what you are asking for, and that this is not discrimination.
• Be confident when asking for what you need. Remember that you know yourself better than anyone and thus know what you need.

Adaptive Sports

ADAPTIVE SPORTS

Through my life I have learned that there really isn't a sport that a person with a disability can’t do. In the article I wrote "Becoming and Staying Active", I briefly mentioned some of the sports I enjoy doing.  Of course the specific sports I listed: wheelchair football, wheelchair basketball, wheelchair racing, tennis and Kayaking are just some.
I have enjoyed playing sports for as long as I can remember. My family showed me that a kid can be a kid whether they use a wheelchair or not. For me sports started pretty young with my brothers and sisters. I remember going to the neighborhood swimming pool to race and play games or the local tennis court to play a game of tennis. If we weren't doing that then we were playing sports with the other neighborhood kids like street hockey, baseball, touch football or even kickball, (yes kickball even though I use a wheelchair).
When I got older, I got involved with more organized sports.  In middle school I started playing wheelchair football, horseback riding, which was a therapeutic program my parents got me involved in but its still a sport, wheelchair racing and swimming through the same program New York State Games for the Physically Challenged, sledge hockey, wheelchair basketball, softball, volleyball, fishing, golfing, bowling and even going out  kayaking on a lake or river with a group of friends.  There have been so many sports that I have tried through the years that I'm sure I am forgetting some!
For me not only are sports something I enjoy doing but its good exercise and definitely good stress relief after a long day or a long week.  There’s nothing better then hanging out with a group of friends and playing a game of wheelchair basketball or wheelchair football in a local gym.
If you want to learn about additional adaptive sports that I didn't mention or if you are having a difficult time locating adaptive sports in your area a couple of options are the Sports N Spokes website which is: http://pvamag.com/sns/   or http://www.sportsabilities.com/.

ASKING FOR AND ACCEPTING HELP

Asking someone for help or accepting help when it is offered is not always easy. Especially if you are an individual with a disability who is trying to become independent for the first time. You are trying to prove to yourself and to others that you have the ability to be independent. It is important to understand that you are not alone. Everyone needs help at sometime in their life whether they are an individual with a disability or not.
As an individual with spina bifida I have always had a hard time with this. I guess I had the idea that I wasn't independent unless I did everything on my own without help. If family offered help I was often too quick to reject the help. I couldn't have been more wrong! It is very important to understand that a very big part of independent living is knowing how and when to ask for and accept help. Even after being on my own for almost 20 years, it still isn't always easy for me to ask for help, but I am much better than I used to be. Through my adulthood. I have not only learned how to figure out if and when I need assistance but also learned how to ask for or accept the help so I can continue living on my own.
Unfortunately sometimes I learned the hard way. There have been times that I didn't ask for help I needed or accept help being offered and because of that I ended up having problems. I moved into the college dorms right after high school and like many 18 year old men and women that is when I got my first taste of independence. Being away from my parents and not having them around to tell me what to do. That freshman year was an eye opener. Everyone (including me) started to notice that in order for me to keep my independence there would be times I would need assistance. Of course even though I may have noticed that myself, doesn't mean I asked for it or accepted it when offered!
In 2001 I moved away from family for my first real full time job as a social worker. At first it was great. I was keeping my place clean and I was taking care of my personal needs. As time went on my responsibilities at work increased. It was common for me to work 10 to 12 hours a day or over 60 hours in a week. With that came increased stress. When that happened it affected some of my decision making and eventually it affected my health. When family asked how I was doing my response was always "fine" or "pretty good" not realizing that I really should have asked for help. Again even at times like this accepting help is not easy for me. I lost track of priorities and which should come first in my life which is me. This resulted in me getting very sick and leaving that job as well as some very close friends. I moved back in with my parents in order to receive the proper medical care. In other words decreased my independence which could have been prevented. Looking back now I should have slowed down with work and focused more on myself and my own needs.
Before I moved into my current apartment, I made sure that I was ready. I didn't want to repeat things that happened in the past. I needed to have everything set in place including a support network. I told myself that it is ok to ask them for help or accept it. I knew I may need assistance with certain things like general cleaning or organization to prevent health problems or maybe just someone close as a support. I still have a very busy schedule so it is easy to loose track of things. At times that I am either stressed from work or showing signs of getting sick, someone close can remind me to do things to prevent health problems. For me this is especially true if I am starting to get sick and don't realize it.
It is important for everyone to understand that we depend on ourselves more than anyone! We know ourselves better than anyone else. Having the ability and strength to ask for and accept help when needed came with time for me. It showed me that I am strong and able to live independent even when things are not going the way I want.