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Blog #13: Happy Independence Day!

Updated: Nov 4, 2024


How often have you dreamed of being totally independent? Of living the life you want to live with the people you want to live it with? Of being able to support yourself and those you love? Of making your own decisions and being responsible for the results? If that's you, then let's make it happen......




**Note:

I want to send a special "shout-out" and note of appreciation to Dale Brown. Dale has been a tireless, exceptional advocate for adults with LD and dyslexia throughout her life. She knows what she's talking about because she lives it everyday. She has been a mentor and a friend for decades and is the inspiration for this podcast. Check out her work below, as it is the primary source material about what we'll be discussing here....


DEFINITION

Everyone talks about independence for people with both visible and invisible disabilities. But what does that really mean? And, of equal importance, what does it mean to you? A simple definition of independence is "freedom from the control, influence, support, [and] aid . . . of others" (Dictionary.com, 2023). In other words, how much is your daily life controlled by other people--and their expectations? Is your home life dictated by your parents, spouse, children, or friends? How much of your education depends on educators or I.E.P.s? Are your social relationships shaped totally by social media? Is your job or career entirely based on the expectations of others? Any, or all, of these questions point to how much independence you have in your daily life.

A characteristic that goes hand-in-hand with personal independence is the ability to be self-reliant. Or as this quote explains: "Independence fosters one's ability to be self-reliant and self-sufficient, to be able to do what is necessary to create a fulfilling life for oneself and one's family"(State.gov, N.D.). In other words, are you able to take care of you and your family as needed in whatever situation comes your way? Self-reliance can also be viewed through the lens of personal freedom.

A lack of personal freedom implies that you are, either covertly or openly, always trying to fulfill the expectations of others. For instance, would you really like to live in your own place, but your parents insist that you still live with them? Do you always agree with whatever your best friend says, even though you think sometimes she's an idiot?? Do you spend every penny of your limited pay check to buy everything on QVC because the hosts make it sound like you need this right now? Would you like to take a trip to Brazil or learn how to tap dance, but are afraid to do those things because everyone would think you're crazy? Any, or all, of these examples are illustrations of how easily someone else can dictate your choices--and then your life. However, no matter what your age or who you are or where you live, there are plenty of ways to celebrate your own Independence Day. One place to start is to compare your life with ideas from the website below. It underscores that personal freedom and personal independence go hand-in-hand.



BENEFITS

As you can see from the website above, personal freedom comes with lots of new risk-taking behaviors, but also lots of rewards as well (Krier, 2021; Jenkins, 2023). Perhaps, of most importance, personal freedom gives you the roadmap and the courage to finally "travel your own path" whatever that is (Jenkins, 2023). It encourages you to trust others while you make your own choices. It increases your sense of self-worth and allows you to take risks and do things you might never had the courage to do before. It forces you to see outside of yourself and to consider the rights and choices of others (Vedanta, 2023). It opens doors for you and gives you new challenges and information for a happier life (Jenkins, 2023; Vedanta, 2023). A really good example is financial freedom (Migliazzo, 2022). Click below to see how this can work for you.....



APPLY TO LD/DYSLEXIA

In my opinion, independence for folks with LD and dyslexia is probably one of the most important concepts about your invisible disability that you will ever learn. It is definitely the foundation to build a successful adult life--in terms of your work, your relationships, your family, and how you feel about yourself. Nevertheless, the paradox is this: You can TEACH yourself how to become an independent person. It can be a skill just like brushing your teeth or playing bridge. Nevertheless, you're still living in a daily environment where most folks don't either know about your disability or understand what you really need. For example, you may have found that our American K-12 system has numerous seen and unseen hurdles to providing you with the critical experiences or ideas necessary to become truly independent person with an invisible disability (National Center for Learning Disabilities, 2017). In fact, the whole concept of becoming a self-sufficient, self-reliant individual is often addressed only in passing as you grow from a child to an adult. Perhaps, in your school district or in your family, personal independence seen only as checking off another goal on your transition plan. So, how can you really learn about independence? You may have to teach it to yourself! Below are a few of my thoughts about this important topic.



(A) I believe Dale's book (see above) is one of the most valuable tools you will ever find in this area. It is a clear roadmap to your very own Independence Day. For instance, she spends a lot of time giving you the foundation knowledge to really understand your invisible disability--perhaps, for the first time. She spends over 50 pages going into great detail about definitions, diagnosis, and types of learning disabilities. Of special interest is her material about: dyslexia and perceptual skills (both visual and auditory). She also covers such critical, but often over-looked, neurological areas as: coordination, hyperactivity, left/right orientation, disinhibition, perseveration, catastrophic responses, other soft neurological responses, and memory issues.

Another thing that I love about Dale's book is that it is so practical. She explains how your personal disability shapes such everyday topics as: family life, dealing or living with your parents, and various independent living skills (i.e., cooking, cleaning, doing laundry, etc.). A really valuable section goes into depth about all things work-related, with great ideas on getting and keeping a job. But, to me, the best part of Dale's book is that she goes one step further--she gives you lots of simple, effective suggestions that you can use right away in your own life. For example, many folks with LD or dyslexia have problems with adult money management . As Dale explains, "People with learning disabilities will find credit cards difficult to handle, as they require thinking about money in the future. There is no concrete sense of 'spending' the money" (Brown, 2005,p.23). She suggests you have only one, emergency credit card--and use it just for that. For more terrific ideas, see Tip #1 below.



(B) Another excellent source for learning how to find your own Independence Day is all of the material currently available about Self-Determination. This topic has been around for over 3 decades, but it is still true today (2BSD, 2020; ). For instance in Podcast #9, we looked at finding your best match by making personal choices. That's really the heart of self-determination--figuring out what fits best for you and your life. As folks from the University of West Virginia (2023) say, "Self-determination is an idea that includes people choosing and setting their own goals, be­ing involved in making life decisions, self-advocating, and working to reach their goals...It's about taking action in your life to get the things you want and need." As you can see, self-determination goes hand-in-hand with goal setting. That's another skill that you may not have learned in childhood or adolescence, as most people with invisible disabilities usually have everyone else make their decisions for them (i.e., parents, teachers, employers, friends, spouses, family, etc.). Add to that on-going feelings of stupidity, powerlessness, and not being heard that comes with an invisible disability, and you will grow a great, big crop of dependency. Don't let that be the story of your life. Start small, like in Tip #2 below, and find your personal vision as an independent adult, with all of the mistakes and successes waiting for you.



(C) It should be noted that a key component of transition planning for students in the K-12 setting is a review of the relevant laws and rights available to you as an American citizen with learning disabilities or dyslexia* (CITATIONS; Pacer Center, 2023; ). This can seem like a very complex topic, but it boils down to one key concept--your legislative safety-net. As a student with any disability in the United States, you are covered by federal, state, and in many cases, local legislation about disabilities. Whenever you were diagnosed with your invisible disability, you automatically received certain rights specifically focused on your individual needs. For example, if you were diagnosed in the K-12 setting (or received early education in some states), you fell under the protection of the Individuals with Disabilities Act, or IDEA. See the website below for more information:


If you were diagnosed later in life, or have left high school (i.e., aged out, high school graduation, or dropped out), you still qualify for protection under the legislative safety-net with two different laws: Section 504 of the Vocational Rehabilitation Act (504) and the Americans with Disabilities Act (the ADA).

Here's some information to get you started thinking about those:


It should be stressed that the key to unlock the protection of any disability-related legislation in the United States is personal self-disclosure. In fact, the laws will not apply to you at all in any setting unless you have a current diagnosis of your invisible disability--and the paperwork to prove it. That means you must be able to produce any documentation (e.g., any old IEPs, a Transition Plan, proof of a diagnosis by an educator, a psychologist, a medical professional, etc.) about your disability if asked by an employer, a college disability officer, or a state vocational rehabilitation counselor. The requirements will vary widely among states, colleges, or employers, so you must be prepared to give them whatever they request. Here's a sample from the University of Washington:



Be also aware that providing the paperwork is only the first step to getting what you need. By doing this, you also are self-disclosing to strangers that you have an invisible disability. This second step is clouded in mystery as many different people have very different points of view about self-disclosure (CITATIONS!!!).

I have spent hours discussing this with adults all over the world and found very little consensus or advice. It's clearly a big step--and an intensely personal one. To underscore this, I will also devote a future Podcast just to this topic. Until then, check out the website below for a few insights as you think about this:



**Note: The previous comments focus on American law and culture. If you live in another country, your laws and expectations for services for people with invisible disabilities could be totally different or similar to the U. S. Please check with local authorities or educators to learn what applies specifically to you.




SCENARIOS




(A) LIVING ARRANGEMENTS: Tom is a smart, gentle, easy-going guy who loves fixing things and taking them apart or putting them together. Since he always enjoyed math and science, his IEP goals and Transition Plan for his learning disabilities stressed going to college to study biomedical engineering. Tom's LD frequently lets him see the big picture first and then think out of the box for innovative solutions to problems. These gifts have made him a success in college and at his first job, where he sees a future with a great salary and fulfilling career. In fact, as soon as he was employed, Tom and his brother Tim got their own place. However, Tom's LD immediately caused problems. He often seemed lazy, disorganized, and was off dreaming in the clouds instead of buying groceries or washing dishes. He also had major time and money management issues. Because of these problems, Tom lost 2 different roommates and Tim moved out as well. Tom's mother keeps stressing that: "we have more than enough room if you want to move back home". But Tom really, really values his independence as an adult. What should he do?



(B) WORK: Eric has been in special education since 4th grade, where his parents sat through multiple IEP meetings after his diagnosis of learning disabilities (e.g., auditory and short term memory issues, limited attention span, problems de-coding words and symbols, and following directions). His teachers, parents, and various professionals started writing a Transition Plan for him when he turned 14, with at least one goal to prepare him to work in his father's thriving electrical business. Eric really didn't care either way--he just wanted to survive high school and go to California to be in a rock band with his friends. Despite his mother's tears and his step-father's tirades, Eric jumped into a buddy's van right after graduation day and went West to find girls, fame, and fortune. Unfortunately for him, it didn't work out that way. Half-way through the trip, his buddies got in a major fight and broke up the band. So, Eric took all of his savings and went on to San Francisco. Soon however, he found that he couldn't find work or a cheap place to live. Then, he heard about a local community college program to become an artist using electrical neon tubing. With his past experience in his step-dad's company, he just might qualify for a stipend and job training. Eric wants to try the program and stay in California. However, all of his family and friends think he's lost his mind--he needs to come home where he belongs. What should Eric do?



(C) LEGAL SAFETY-NET: After Adina finally graduated with a secondary diploma, she went on to the local community college for a 4 month training program as a paramedic. She worked long shifts for over 5 years as part of an EMT team in New Orleans. However, the stress and crazy hours have frankly burned her out. She loves her work and has decided to apply for a scholarship to go on to nursing school. But, when she explores this idea with her older sister Zoe, Zoe replies, "That's a great idea honey, but how are you going to keep up with all that reading and paperwork?" Zoe is worried about her baby sister and her dyslexia because she had virtually no support or tutoring during high school for her reading, writing, and spelling problems. She just doesn't want Adina to fail again, like she did in a few of her high school classes. In frustration, Adina contacts her favorite teacher in the Science department, who encourages her to go for it. She explains that Adina can get all types of support under the Americans with Disabilities Act and through her local Vocational Rehabilitation office. Adina is still not convinced and wonders if she should even try at all. She feels stuck in a dark hole with no way out. What should she do?


TIPS and TRICKS


Do any of those scenarios describe you? Or a family member or someone you live with? If so, now's the time to try one of the Tips below....



TIP #1: LIVING EVERY DAY:

Let's start this Tip with a wonderful quote from Dale Brown (2005): "People who have learning disabilities may be disorganized. They may be sloppy, leaving possessions all over the house. They may lack a routine, making it difficult for their family to plan ahead. . .Housework may be extremely difficult . . Family errands, such as shopping, present further problems. . . Following directions is hard for people with auditory perceptual handicaps. . . Time is a difficult concept. They may get so absorbed in activities that they keep people waiting " (pg. 19).

Does this any of this seem familiar? Many adults from all over the world have told me that this is their reality. Such independent Activities of Daily Living as: cooking, cleaning, paying bills; keeping appointments; using transportation, or finding a place to live are huge hurdles for them. It always seems a miracle to me that they continue to struggle on by living their lives with style, grace, and kindness. So, how can you do that as well? That's where Tip #1 comes in. Dale gives you 2 great hints to get you started:

  • Make a list of problems

  • Discuss one of the problems with [someone you live with] (Brown, 2005, pp. 20, 21).

That probably sounds so simple, but it is the start of living successfully--either by yourself or with someone else. For instance, look at Scenario A above. In general, Tom seems really happy with his life. He is a great guy--he just can't find anyone who wants to live with him. He consistently drives other people crazy with behaviors directly related to his LD. Who wants to live with someone who never washes a dish or leaves food to rot in the fridge? Who never pays any bills on time, so the water is cut off? Who is so kind and so smart and really likes sharing his life with others, but never, ever picks up after himself?

Tom just can't figure out why people don't want to live with him. Then he remembered that his mom used to nag him like crazy about leaving the kitchen a mess and always creating a trail of his stuff behind him. He remembers being forgetful and how his friends used to get mad because he would never pay back the money he owed them. These problems could be clues to his dilemma. So, Tom decided to talk to his mom and Tim to see what they thought. During that conversation, he found out that his family saw him as a really, really messy guy with no sense of responsibility. Tom was so shocked at this that he asked Alex, a former roommate, out for a beer to see if all this was true. When Alex agreed, Tom knew some changes were in order.

With Tim's help, he picked out one problem (e.g., leaving the kitchen a mess) to tackle first. So that he wouldn't have to live in restaurants all of his life, Tom asked a friend, Alice, for help with his cooking skills. Since he loved spaghetti, they looked various videos and found one that was simple and easy to follow. Tom then tried out the recipe in Alice's kitchen first--and made sure to clean up the mess afterward. After that worked, he went on to learn how to make an omelet. Next, Tom tackled the second problem; not picking up after himself. Tim bought him a set of multi-colored bins and put them outside Tom's bedroom. He encouraged Tom to put different things in each bin every time he walked by (i.e., shoes in the yellow bin, clothes in the blue bin, jackets and hats in the red bin, laundry in the green bin, etc.). Tom then put everything away during the weekend and had empty bins for next week. Tom became so inspired that he found the solution to another problem himself. He asked friends to recommend a budgeting app for his phone and found one to remind him to pay bills--and his friends--on time. Tim was so impressed with his brother's progress that he moved back in and brought a friend with him. Tom continues to be proud of his independence.

Are you like Tom? If so, try Tip #1. First, take some time and think critically about your own Independent Living Skills. If you do all of these things well, congratulations! If not, focus on one problem and take a risk. Talk about it with someone you live with or trust. Really listen to their feedback and prioritize one area to start. Ask for suggestions from others or look online for ideas. (This is where Dale's book can be a great place to start.) Then jump in and try to change that behavior.



TIP #2: LIFE GOALS:

Nothing can be harder to do--but more fun to accomplish--than goal setting. It's critical to being a successful adult with an invisible disability if you know exactly where you want to go and how to get there. Goals can be as simple as getting up fifteen minutes earlier to be on time for work to adopting a child or finding the love of your life. All you have to do is: (a) be motivated and (b) set some goals. Eric is a perfect example of this. As seen in Scenario B above, he's really motivated to move his life forward. He already knows what he wants--but just not how to make it a reality. He's taken tremendous risks by moving to another part of the country and trying to support himself on his own. Now, he wants to explore a new career as a neon artist. That's his goal. Filling out the worksheet below can give him a place to start.



For instance, Eric could complete the Community College application for the neon artist program as a first step. A second step would be to explore loans and scholarships through the College. A third step would be to get the contact names of a few, local neon artists and talk to them to see what the field is really like. He might even volunteer to try it himself. In terms of two things to help Eric reach his goal, he clearly needs to find: a local mentor, someone in the college disability office, or an actual neon artist to give him more information and encouragement. But, he also needs a friend or family member, if possible, to be his support team. Maybe that won't be his parents right now, but perhaps a sibling or close friend could help him make this huge step in his new life. Goal setting could be just the beginning for Eric.

So how about you? Are you ready to be independent and move forward? First, check out the two articles below to get you started:




After you've read that material, step up and set a goal for yourself. Take the "Simple Goal Setting Worksheet" and pick something that is important to you. Take that risk and see where it leads you--that's how you find your own Independence Day.....



TIP #3: USING THE LEGAL SAFETY NET

When you first hear about all of the laws and legal rights you have as a person with an invisible disability, it can seem really overwhelming. You hear this stuff about documentation, laws, accommodations, and you have to ask yourself: "Does any of this really apply to me?" That's the great thing about the legal safety net--it's your decision to decide if and when you want to use it. For example, those are exactly the questions that Adina is asking herself in Scenario C. She wants to go back to school but knows that she cannot make it alone. Given her previous negative academic experiences in high school, she wonders if it's even worth it. But, there is light at the end of this tunnel. Under Section 504 and the ADA, Adina could receive career advice, personalized tutoring, audio books, a notetaker, and maybe even a scholarship to help her. Additional services could be available through her local Vocational Rehab office, such as: vocational testing and counseling, assistive technology, resume/job application help, job search support, and placement assistance. What are her biggest obstacles? Her fears and ignorance about what's already available.

How about you? Do these same obstacles hold you back? Would you like a promotion at work or to go back to school? Do you avoid voting because you can't read the ballot? Do you need a certain accommodation to take your driving test? Any of these situations can be addressed by the legislative safety net. So, start by doing Tip #3. First, educate yourself by watching these two videos or others in the resource list below. Second, take the time to tell someone else 3 new things that you learned about the ADA or 504 to make sure you understand them and how exactly they apply to your life.



When you've shared this information with someone else, you've also completed another part of your journey to independence--You've talked about your disability with someone else. This is such a huge milestone for most folks with LD or dyslexia, that you also should ask yourself: "How do I feel about self-disclosing my invisible disability?" This video can give you a lot to think about that often, risky, very personal topic: https://www.youtube.com/watch?v=y8vSxzWYQ14 Is Vanessa singing your song? Do her thoughts, emotions, and insights mirror your own feelings and ideas about telling others about your invisible disability? Adults have told me that they make this decision over and over again in many different settings, so take your time and become comfortable with what you say and how you say it to others. It makes a difference!


RESOURCES



IMPORTANT CAVEAT: As I am most familiar with the United States, I focus primarily on the American definitions and legalities of LD and dyslexia. However, that information clearly is not even a small corner of the whole picture. For instance, did you know that approximately 780 MILLION people in the world have dyslexia? That translates to about "10% of the world's population" (Elias, 2023). That's like the combined populations of the United States, Canada, Mexico, the Soviet Union, Australia, France and Argentina!

Consequently, I've listed below some excellent material for you about how other countries address this often complicated and challenging topic. Please note that I just picked a few countries at random as representative of the wide range of resources and legal support currently available throughout the world. They are a good place to start. But, if you spend a little time looking at the international phenomena, you'll be amazed what's out there and what still needs to be done. Just check out a few sites below to get you started:

*Please Note: Since there is still confusion and lack of consensus about a single definition for Learning Disabilities world-wide, I have highlighted material about dyslexia instead. You are welcome to take a deep dive looking further at the concept of LD in different countries and cultures. Just be prepared for lots of confusion!



REFERENCES




TRANSITION CONNECTION

 
 
 

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