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Podcast 18: Use Every Resource

Updated: Feb 21


What if you had a treasure chest available whenever you wanted? But you never used it, because you didn't know it was there? That could be you--if you don't take advantage of all of the resources waiting to be found. Let's look and see what's out there for you.


Why Find New Resources?

I've wanted to do this podcast for a long time. Sometimes, when talking to adults with LD or dyslexia, they just seemed "stuck". They often describe everyday problems at work, at home, or at school that are part of their invisible disabilities. But, they clearly don't have a clue as to what to do next. Maybe they are falling more and more behind at school. Or, they face probation at work because they kept missing deadlines with key projects. Perhaps, they are lonely and isolated in a relationship because they can't communicate or tell the other person exactly what they need. All of these situations can happen to anyone--but they seem especially painful and difficult when you have an invisible disability. How do you break this negative cycle and move forward?

   When talking further to these folks, I noticed something else. At least in the United States, when someone is diagnosed with a disability either as a child or adolescent, students and their families are always told "what to do next". Their teachers usually follow the IEP for guidance. Most classrooms revolve around telling students, both with and without disabilities, exactly what to do, where, and when to do it. Outside of those walls, the rest of the child's life is usually managed by parents or other family members. All of this control through the years leaves folks with disabilities a very clear message: someone else has the "answers" to everything.

    How does that change when you're an adult? You start wanting answers of your own. However, that quickly becomes very complicated when no one really understands exactly what you're facing. The big question then becomes: Who can help you? This becomes especially difficult, when you're too embarrassed to ask for advice.

Plus, there's often another darker, depressing side to this scenario. What if you finally get up the courage to ask for assistance, but there's nobody there to help you? In fact, nobody seems to understand what you're talking about. For example, let's say that you are on probation at work because you're missing too many project deadlines. You ask to speak to your supervisor in private and carefully explain that you have a learning disability. Your invisible disability involves problems with time management. Your supervisor looks at you with a blank face and says, "You're telling me you're retarded? Is that what you're saying? That's your excuse?" You're stuck again--plus full of shame as well.

This situation, and many more, happen everyday to adults with LD and dyslexia around the world. That's why it's so important to look for all of your hidden resources and support to find your own answers.


Definition

It's one thing to know that you need resources and support. It's a totally different thing to find them. So, where do you start? Resources can be defined as "a source of support" or "personal attributes and capabilities [that] help sustain one in adverse circumstances". They can also be"the ability to find quick and clever ways to overcome difficulties." (Oxford Languages, 2024; Webster, 2024).

All of these definitions underscore the same theme--resources are assistance and guidance where and when you need it. Two other important ideas are:

a) resources can be an effective way to address unpleasant or negative situations, and b) resources can be ideas, people, or opportunities that you really didn't know existed before. As the materials in this blog illustrate, it's amazing how often you can find what you need in diverse, undiscovered sources. Check out the ideas below to get you started.....



Types of Resources: One Size DOES NOT Fit All


Unlike the other topics covered in previous podcasts and blogs, finding your own resources can be a whole, new set of hurdles in itself. Your answers are often hidden and really hard to find, so you may have to really dig deep for this stuff. Current material about LD or dyslexia in adults is often non-existent or incredibly confusing. In fact, sometimes the answers can be hard, if not impossible to track down. One way to get through the maze is to view this mass of un-related material within the lens of six overlapping categories:


a) Written material (books, articles, journals, etc): For folks with severe dyslexia or reading problems, written material may be problematic because of complicated vocabulary, long sentences or chapters, poorly organized written materials and ideas, etc. But, they may still be useful. Here's an example:


While this may be a credible, well-researched article full of useful information, wading thorough the terminology can be daunting for folks with LD or dyslexia.


b) On-line material (websites, chat rooms, social media sites, etc.): In general, this format may be more friendly and accessible to adults with LD or dyslexia. My concern is the reliability and validity of the information. For example, would you use cash from a credit card just to play the stock market? (Ericson, 2022). What about "playing hard to get" to find your perfect partner? (Sideman,2018). Both of these ideas are terrible advice. Yet, someone, somewhere is currently doing just that because they read it online or on TikTok. That's why a little caution never hurts when reading new information online. For more thoughts in this area, check out the article below:


c) Individual person-to-person assistance: This type of assistance is probably what you're the most familiar with, as you may have a special friend or close family member who helps you. Such one-to-one support is a precious resource, as nobody knows you better than this person. If you have someone in your life like this, consider yourself very lucky (O'Shea, 2017), as O'Shea says below:


d) Group support (chat lines, social media, on-line or in person support groups): This is a broad, umbrella category that covers any time you talk with others; either about your invisible disability or anything else in your life. For instance, you probably check Facebook or Instagram a few times a day to keep in touch with your family or friends. While this can be entertaining, it rarely has anything to do with your LD or dyslexia. In fact, one of the hardest parts of having invisible disabilities is that there are little, if any, support groups currently available to meet your needs. Finding others like yourself and talking honestly to them can be a real challenge. Read more below:


d) Materials you pay for: Who going to pay for this? One of the best kept secrets that nobody, but NOBODY, tells you when you leave the sheltered world of public education is that being an independent adult with LD or dyslexia can be very expensive. (I have found this to be especially true in the United States.) For instance, all of the diagnosis, personal guidance, mental health or job counseling, tutoring, accommodations, and mentoring that you received under IDEA* were free to you and your family. Now, all that costs money--sometimes big money. What about private tutoring or job evaluation and support? These resources can be crucial to your success as an adult, but they won't be cheap. For example, job coaches often charge between $75 and $150 per hour (Mentorcruise, 2023). In addition, just getting your LD diagnosis up-dated can run you between $500 and $2,500 (LDA, 2023). This is especially ironic, as most colleges and jobs require updated documentation to even access the ADA. Only you can make this decision, as to how much effort, time and money you can afford. For instance, see what experts say below:

e) Free Materials: Who doesn't like free? As an adult who is no longer covered by IDEA*, you will probably need to pay for most of your resources yourself (college tuition, individual tutoring, personal counseling, career advice, etc.). That can be difficult, especially if you are burdened by student loans or work at a minimum wage job. Nevertheless, there are still some things that are free, if you have the time and energy to find them. For instance, each state has a local Vocational Rehabilitation office whose goal is to help folks with a variety of disabilities get careers, live independently, and receive further education and job training (Careeronestop, 2023; Dowdy, Smith, & Nowell, 1992). Spoiler alert: Space is often limited in these programs and they may require a lot of patience and follow-up to find what specifically fits your needs. On the other hand, if you just want general, basic information about invisible disabilities (definitions, characteristics, causes, types of classroom or job support, etc.), the Internet can be a great place to start. For instance, the Resources sections of each Blog and Podcast are jam-packed with useful, up-to-date information to give you what you need right now.

Here's a couple of my favorites to get you started. My go-to website is still LDOnline. In my opinion, this adult-oriented material is the best in the business; as it is well-researched, easy to understand, and up-to-date. Be sure to check out their material on: Adults with LD, College and College Prep, and Transition or School to Work (LDOnline, 2023). Speaking of work, you can't beat the Job Accommodations Network. They are always full of ideas that are invaluable for job support. Especially check out their materials on accommodations and working with employers:


*Note: Free support for adults with disabilities in the United States is--at best--a very, very complicated puzzle. Unlike other counties, American services for disabilities are based on a de-centralized model under IDEA with little or no coordination among the various parts. However, I've found that other countries, if they have services at all, often use a more centralized approach. (Check out those in Sweden and Japan.) These services are usually solely based within the federal government, so for many of you who are not in the United States, this is your first place to start. I've observed that since everything flows from one source on the federal level in these countries, they can be easier to navigate. Examples are services for people with disabilities in: Canada (Canada, 2024), the European Union (European Disability Forum, 2024), and Thailand (Disability:In, 2024). And who can forget my buddies in the UK? To me, their ideas and material are the gold standard and I use them all the time. Also don't forget that some countries may have a more erratic, less supportive approach to disabilities (Expat Focus, 2024; Wikipedia, 2023; World Bank, 2021). That's why it's important for you to delve into what your own country has to offer.


f) Miscellaneous opportunities: Nothing beats the personal touch. Perhaps, the most valuable resources you will ever find are not in a book or online. If you are able track down and then use internships, volunteer work, scholarships, summer jobs, or work study programs, you will gain great experience, develop new relationships, and create a support system that will be there for years to come. For instance, what about volunteering for the local animal shelter if you want to be a veterinarian? Or, getting a summer job at a day camp for young children if you want to be pre-school teacher? What about being an assistant coach for a girls' soccer team to learn time management and leadership skills?

In addition, high school guidance counselors and college career centers are often under-utilized, overlooked goldmines for local or national information (Collegedata, 2024; Indeed, 2023). For instance, these folks often provide: career counseling, help with resumes and cover letters, social media tips, ideas and applications for under-grad or graduate school, networking activities, job search materials, and professional development workshops. They may also have especially valuable resources if you are a veteran. Plus--wait for it--all of this is free! How cool is that? For other ideas, see below.




But don't forget that the most important resource is you--and what you bring to the table! What you already know about yourself or your own needs can be the best place to start to jump start your life in a positive direction.




Benefits

It's amazing how beneficial it can be to find your own resources. For instance, right away you will feel more independent and powerful. You start to realize that you aren't dependent on someone else to drive your bus. Instead, you're taking proactive steps to do what you need to do and go where you want to go. Your life becomes YOUR life, not dependent on someone else who may, or may not, have all of the answers. This is a powerful message that can really change your life.

Whether you're trying to navigate the confusing world of appropriate accommodations or learning for yourself how to effectively use the legislative safety-net available to Americans with disabilities, this often seems like a lonely, hard road. However, finding your own resources will bring you many, new rewards. For instance, you will learn to take control of your own life. You figure out what your personal strengths, values, and boundaries are. You will become a better listener and better decision maker. You practice effective problem solving skills, while also building healthy relationships with others (Moe, 2021). It may seem difficult, but it can really be worth the effort.


Connections to LD/Dyslexia

Overall, in my opinion, trying to get support and help for your invisible disability in the United States is a mess. Many adults and their families have told me that once they get a high school diploma or leave public education, they are stunned. They feel like they've fallen off of a cliff that they never knew existed--until it was too late. Where is the special education teacher and the IEP meetings? Who do I talk to to find a job? Get into college? Move into my own apartment? Pay my bills? Figure out dating? Take care of my children or my family? Who has those answers? And--what can be even more scary--what if there aren't any answers?

This strange, and disturbing, situation is one faced everyday by families and adults in homes, schools, and workplaces around America. Some folks with LD or dyslexia may be lucky, if they have a professional, educator, or friend who can guide them. Perhaps, someone else in their family has a disability or there is a teacher who wrote an outstanding Transition Plan with clear guidance about what to do next. If not, these folks are on their own. All of this is further complicated with another side to this puzzling paradox.

Despite the millions of dollars spent every year in Special Education in the United States, there is still little, credible research, guidance, or support available to adults with learning disabilities. If you doubt that, just google the term Support for Adults with Learning Disabilities and see what you get. (Notice that many of these are just general websites that can be confusing and offer only the most generic, broad-based information. Others focus on developmental disabilities or other types of disorders.)

Or, ask anyone in your community what they know about adults with LD or dyslexia. Whether you live in an urban, rural, or suburban setting, you'll probably hear the same thing: "What? Oh, you mean like my cousin. He is dyslexic, I think. But, he's always getting into trouble." Another answer may be: "You mean someone who can't read or write. Like Cher. I guess they get help for that in school, right?" A third response may be: "I don't know anyone like that. Is that where they can't pay attention?" All of these responses, while well-meaning, underscore the ignorance and lack of knowledge or support for folks who "seem normal", but carry an invisible stigma. This huge gap is ironic, as over 1 in 5 Americans currently have learning disabilities, with only 1 in 50 receiving any kind of services at all (LDA, 2024). These statistics clearly reflect where we are in the United States, and why trying to find necessary resources can be such a challenge.



*Please Note: When talking about resources, I have specifically focused on what's currently available in the United States. To be respectful to folks in other countries or cultures who read these blogs, I don't want to generalize for them. Instead, my travels abroad have shown me lots of different ways that other countries deal with adults with LD or dyslexia. Some have an array of support

and resources that are truly impressive, while others may just be started to tackle the diverse needs of invisible disabilities. (See the sub-section on "Free Materials" above or my up-coming blog on International Support.)


Scenarios


Scenario A

Tim has always wanted to be a lawyer. Despite the fact that no one, and I mean no one, in his family has ever thought about going to college. When you're living in the projects in Los Angeles, you just worry about feeding your family and staying alive. Lots of Tim's friends are gang members now. He is especially worried about Mateo, his best friend since 3rd grade, who is in a wheelchair after being shot during a drive-by shooting. Tim's dream is to work for Legal Aid in his home community. But his grades at the Community College have been average, at best. Reading, writing, and spelling have always been hard for him due to his learning disabilities and ADD. In fact, he never got much tutoring and his excessive absences during high school didn't help matters. Nonetheless, Tim just knows he can make a difference for his family and friends if he can just figure out how to do it.



Scenario B

Mary is a loner. She has the biggest heart of anyone you will ever meet, a great sense of humor, and loves being around people. But throughout her life, she felt ignored and left out due to birth defects from childhood (e.g., a mild speech defect, shortened leg, and learning disabilities). In grade school, she was invariably picked last and usually not invited to parties or social events. High school wasn't much better, even though her parents and three sisters did everything they could to make her feel included. Now Mary's parents are dead and her sisters have all moved away with families of their own. They try to keep in touch but it gets more sporadic every year. Mary works on-line from home and supports herself just fine--but that's not enough. The loneliness and isolation never seem to go away. Her rabbi suggested that she try a support group and helped her find one for adults with LD and dyslexia. But, she's too shy to try it. Besides, who wants to hear strangers complain all of the time?




Scenario C

Cheryl loves children. She comes from a large family of 8 kids. As the oldest, she was always changing diapers, wiping noses, or picking up after her brothers and sisters. As a single mom, Cheryl's mother was often out of the house working two or three jobs. So Cheryl pitched in by making sure everyone did their homework and got to school on time. She now is happy as a kindergarten teacher with lots of kids to love and take care of. She still sometimes faces academic issues, even as a teacher, because of her dyslexia but has a very supportive supervisor. However, now Cheryl's really stuck. She has been dating Gary for two years and he is pushing to get married and have kids. He wants a whole house full of children and is ready to have them with Cheryl. But, she's scared to do that. She learned in her Special Education classes that dyslexia is hereditary. She also suspects that at least one of her brothers may have learning disabilities. Does she want to burden her child with this? She's too ashamed to talk to Gary about her secret. What should she do?


Tips and Tricks




Tip #1: Be Your Own Cheerleader

If you talk to anyone in education or counseling about LD or dyslexia, the conversation inevitably comes around to self-advocacy. This is a great idea, but in my experience, most adults with invisible disabilities don't have the foggiest idea about it's real-life implications. For instance, when you're really on your own after high school, who do specifically do you talk to? And, of equal importance, how do you go about it? For instance, if you're an American college student with a Disability who requires accommodations, just go to Disability Office and use the ADA or Section 504. These folks will advocate for everything you need. But what if you need those same accommodations at work or in the community? Or, what if you're trying to get some support from your family or friends? Then, you're on your own--and good luck with that.....

The first time you hit that wall, you'll truly understand just how lonely you are out there and how difficult self-advocacy can be. That's when knowing how and when to find your own resources can be such a valuable gift. These challenges are nicely illustrated by Tim's dilemma in Scenario A. Tim is a great guy with academic problems who is truly motivated to help others in his local community. He sees the critical need for good legal help around him everyday with his family, neighbors, and friends and wants to be part of that picture. But, how to do that if you can barely read or write yourself? This is where finding the right resources and becoming your own self advocate can be the key to a new life.

Tim went for guidance to Alicia, a teacher who was a friend of the family. She remembered a flyer for a federal program called Upward Bound at the local community college where she worked. This is a federal program that focuses on low income or first generation college students. To qualify, you must have finished the 8th grade, be between the ages of 13 and 19, and need academic support to get a college degree (CITATION). But that's just the tip of the iceberg. If you are accepted, you can access an amazing array of services (e.g., academic tutoring, personal counseling, mentoring, and financial guidance). Additional help can include: scholarships, career exploration, fee waivers, social activities and field trips, ACT prep, and a summer academy. All of this is free.

With Alicia's help, Tim filled out the application and crossed his fingers. He was accepted and got his AA degree from the Community College. He then applied and was accepted to Cal State LA where he pursued a degree in Pre-Law.

It's been a long, hard road full of challenges but Tim never looked back. He knows that he would have never got this far without his Upward Bound mentors and extensive tutoring and academic help at the community college and Cal State. He plans on graduating next year as the first person in his family to get a college degree. For more information about Upward Bound, see below. If you're like Tim, this may be just the option you need to jump-start your future. Start checking out other state or federal programs for disadvantaged college students. There may be more there than you think.





Tip #2: Find Your "Besties"

Support groups have been around a long time for a variety of reasons. You are probably familiar with Weight Watchers (to lose weight) or Alcoholics Anonymous (for help with drinking). There are a myriad of support groups out there; some for serious issues like gambling, sexual abuse, shopaholics, postpartum depression, or veterans with Post Traumatic Stress Disorder (Helpguide, 2024). Other groups are social and entertainment oriented, such as: Mardi Gras Krewes, book clubs, line dancing groups, or church/synagoge singles groups. All of these diverse groups get together because they have a common interest. The members want to: share ideas and feelings; address common goals; try new experiences; get information; and learn coping strategies (CITATION). Since most of them are free and easy to access, this seems like a perfect resource for folks with LD or dyslexia.

Wrong! Another of the crazy hurdles facing folks with invisible disabilities is that there are very few--if any--support groups focusing on adults with LD or dyslexia. Why is this so? Who knows, but this has been the situation for many years. In my experience, there might be a sporadic group available to college students through the College Disability Office, if you were lucky. But nothing consistent and large scale like AA or Weight Watchers has ever existed in the United States. Most adults with LD or dyslexia are totally on their own.

All that changed during COVID, as most face-to-face support groups stopped meeting altogether. The ones that continued to meet did so totally online. Since there were not many groups available to adults with LD or dyslexia to begin with, that situation didn't change dramatically. However, there does seem to be a growing presence in social media for this group on Facebook. There are also a few online support groups specifically for adults in the UK. (If you know any others, please let me know!) The current situation means that support groups are still an invaluable tool for folks with LD or dyslexia, who often feel lonely and isolated. They still definitely are worth looking into for many reasons.

A good example of this is Mary in Scenario B. Mary is a wonderful person who could be a valuable friend for anyone. But, she has spent most of her life feeling like she was living life on the sidelines. Her primary support has always been her family. However, time moves on; her parents passed away and her sisters started creating their own lives. Mary's been left behind--again--and her shyness and disabilities just making connecting with others even harder. Mary had thought about the support group idea for about 5 minutes and then rejected it. But now, since she feels so lonely and isolated, maybe she should reconsider it. What could she lose?

Her neighbor Elaine, who had been active in AA for years, really encouraged her to explore this option. So, Mary invited Elaine over for coffee and they went online together. They checked out a few Facebook pages devoted specifically to adults with LD and/or dyslexia. Elaine cautioned her to be very careful with personal information online and only join private groups, if possible.

Mary found two groups she liked; they had many heartfelt comments and insights that mirrored her everyday life. She enjoyed reading everyone's responses, along with resources that she might have never thought of. She found herself checking these pages every few days. Mary was amazed at how easy it was, because she never had to leave home and could work this around her job schedule. At first, she was too shy to leave comments, but after about a month, she started leaving her own posts. Immediately, she felt less alone when people responded. She also met Ben and Melissa, two people that she always connected with. Eventually, they agreed to exchange phone numbers and now talk almost every day. Mary has told Ben and Marcie things that she never thought she would tell anyone. Who would have ever guessed that Mary would find her "besties"--not in her neighborhood--but 1,500 miles away....

Maybe, you're like Mary and feel stuck. Or you feel isolated and alone with no one around who understands you. If so, a support group or connecting through Facebook with folks with your hidden disability might be just what you're looking for. The first is a good article to start thinking about support groups. The second gives you some great guidelines about Facebook.


*Please Note: The majority of these groups are in the UK--a shout out to my buds there who continue to do GREAT work for folks with dyslexia and various types of learning disabilities. As this is online, it may not be a problem for you wherever you live. You may want to check one of them out.....






Tip #3: Educate Yourself

Anyone who spends the time and energy to research the topics "Learning Disabilities" or "Dyslexia" will find an almost overwhelming amount of material. In fact, if you look long enough, you'll see that everyone seems to have their own definition of these disorders, along with LOTS of advice about what to do about it. That's the good news; the bad news is 80% or more of this material is focused strictly on the needs of children. For instance, just Google "Learning Disabilities" and you'll find a mountain of information addressed to parents, teachers, or others who work with children. Don't get me wrong--I'm very grateful that so much currently exists to help these folks who are responsible for children with invisible disorders. My concern is that these kids always grow up. A legitimate question is then: What happens next? That's where the credible resources suddenly become few and far between. In fact, such important topics as: dating, sexuality, marriage, having children, living independently, supporting yourself, paying taxes, starting your own business, or parenting just don't exist (CITATIONS). Also, what about the important, but never talked about, decision whether to have children or not in the first place? All of these are adult-oriented topics where folks with LD or dyslexia may especially need guidance.

This dilemma is illustrated in Scenario C. Children have always been important to Cheryl. As she was helping her mom raise her brothers and sisters, Cheryl regularly imagined her own family when she got married. But, nothing and no one ever had the time or the energy to talk about her or her brother's learning problems. In fact, when he dropped out of school and got in trouble stealing cars, everyone just said it was a phase he was going through. He was really a good kid, he just hated school. Cheryl mostly ignored her own academic problems and tried harder in college. Dyslexia wasn't even on her radar. But now, things have changed and her priorities have shifted. She loves Gary very much and can see a wonderful life ahead for them both. But, kids? That's another story. What if she has a child with dyslexia? How can she in good conscience put that burden, one she's carried silently for years, on someone who is her own flesh and blood? And, of equal importance, how is Gary going to take this news? Will she lose him and her chance for her own family? All of these questions started to haunt her.

Finally, Cheryl became so anxious that she shared her secret with her supervising teacher, Becky. She and Becky had talked briefly about dyslexia over the years, but had never really discussed it in depth. As Cheryl shared her fears, Becky was reassuring, but made it clear that this was a serious decision that only Cheryl could make. She strongly suggested that she educate herself as soon as possible.

Although Cheryl didn't know where to go for advice, she did find some online articles that gave her facts about dyslexia. What she discovered gave her pause. For instance, she found that: a) Either a mother or a father can pass dyslexia on to their child. There is approximately a 50% – 60% chance of a child developing dyslexia if one parent is dyslexic, and b) Research shows that 40% of siblings of children with dyslexia may also have reading issues (Exceptional Individuals, 2023). Furthermore, the gene that is most likely to cause dyslexia is KIAA0319, which is strongly associated with chromosome 6 in people with dyslexia (Paniagua, et. al., 2022). The research is not so clear cut on genetics and learning disabilities. Although LD seems to be hereditary, there are still many questions here (Boston Children's Hospital, 2024). Overall, inheriting either disability can be shaped by many factors, including genetics and the environment. However, being hereditary is definitely part of the picture (Texas Human Services, 2024).

Cheryl spent a lot of time thinking about what she discovered. She finally realized that she loved Gary so much, she had to talk to him. If she lost him, that would tell her the marriage might not work anyway. The results of her discussion were better than she anticipated. Gary was not only incredibly supportive, but applauded her for her honesty. Her confession opened the door to discuss other important topics. She also realized that this is a decision they would have to make together. As a result, they decided to have pre-marital counseling with their priest. Cheryl got her engagement ring two months later.

Have you ever wondered about certain aspects of your invisible disability? Maybe you're like Cheryl and you wondered about having kids. Or, you're scared that your LD will keep you from graduating college. Perhaps, your boss is finally running out of patience and wants to know: ". . . just what's wrong with you?" How do you respond to all that? These are life lessons that adults, not children, struggle with everyday. There's no owner's manual for folks with dyslexia or LD. That's where your resources come in! Now's the time to use them . . .





Resources

Transition Connection

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