Creating an Independent Future for Your Adult Child with LD
"Will she be able to get and keep a job?" "Will he be successful at living on his own?"
These are some of the questions and concerns that haunt parents of children with learning disabilities (LD) once they leave school and enter adulthood.
Drawing from personal experience and her work as an activist on behalf of individuals with learning disabilities, Anne Ford provided insights about the frustration, confusion and heartache that are shared by so many families as their children strive to become increasingly self-sufficient and independent. Ms. Ford addressed questions about social skills and dating, sibling relationships, job hunting and interactions with employers and co-workers, finding colleges and training programs, and more.
In her current book, On Their Own, written with John-Richard Thompson, Ms. Ford gives voice to this often challenging time in the lives of children and their parents, and serves as a "family guide," offering clear and concise information and serving as a rich resource for assistance and guidance.
To read an excerpt from Anne Ford's new book On Their Own, click here. To purchase the book from Amazon, click here.
The LD Talk was moderated by Dr. Sheldon Horowitz, director of professional services for the National Center for Learning Disabilities.
It seems the overwhelming difficulty when my students graduate from high school is social isolation stemming from weak social skills even though they may be attending a vocational/technical college or similiar. Do you have suggestions to share on avoiding this trap?
I'm sure you have seen firsthand that deficits in social skills present the greatest challenges of all for young adults, regardless of whether they go off to college of some kind or into the workplace. Making and keeping friendships can be a daunting task, especially for those who have had little success in this area in the past.
One thing you may want to point out is that college (or even the adult world in general) presents new opportunities for young people to connect with others of similar interests and backgrounds. Many colleges, for instance, have organizations set up specifically for students with LD which allow them to meet others in similar circumstances.
Most colleges provide LD Services of some kind - that is a great place to start. LD and ADHD organizations also host get-togethers in some states. Visit NCLD's Resource Locator to find contact information for your state LDA or ChADD to find out if there is anything in your area.
Finally, I always recommend the Internet as a way for young people with LD to connect. Some of us can't seem to shake the image of someone in a dark room, isolated and unable or unwilling to carry on a conversation with a live human being (that bothers us, whereas someone spending five or six hours alone in a dark room watching television doesn't seem to faze us at all). The reality is that young people all across the world are linked up and wired together through MySpace and other online communities. Yahoo and Google host chat room sites. I personally went online and discovered thousands of "Groups" on Yahoo with the words "learning disabilities" in the title. These are people using new technologies to reach out and communicate with others who face the same day-to-day challenges. Some have even formed small support groups online. In a way, it's what you parents are doing now - reaching out to connect with someone else in your situation, to ask questions, and hopefully, receive the answers you need.
Having said all that, I add the caveat that parents of younger adults should make efforts to ensure their child is not going astray with their online chats.
My daughter is a freshman in high school and has just been taken off her IEP. My major concern is my daughter's limited ability to following instructions well. I worry about her being able to accept critism and following directions once she enters the work force. Will she mature enough? And since she has no friends, I worry that her weak social skills will also hold her back in the workplace. What can I do now to help her not get fired in the future for misinterpeting social cues, reprimands, direct orders, instructions etc.?
It sounds like your daughter still faces problems due to her disability. If that's the case, I'm not sure why she was taken off her IEP. You may want to consider revisiting the plan. As for your questions regarding her abilities in the future, it is impossible for me to tell if she will be mature enough to accept criticism and follow directions. She may be, but there are steps you can take to help ensure that she will be.
Let's start with the weak social skills. These problems cause the most anguish of all for both parent and child. Try to anticipate some of the scenarios your daughter may face once she gets out into the workplace. You don't even have to go that far into the future. Anticipate a situation that may come up in a week or month from now, and go over that situation in advance. Use role playing, much like an actor uses improvisation techniques. You can play the part of an interviewer or employer or whoever may be "in charge" of a particular real life situation.
Ask questions and present problems your daughter is likely to encounter and see how well (or how badly) she handles them. Even if you have limited success in changing their responses to a given problem, letting them know the problem is a possibility can be a huge help. I have found that Allegra does much better in a given situation when she already knows what to expect.
My daughter, 16 yrs. old told me she does not want to grow up. So she doesn't want to go to school, do chores, get a job, learn to drive a car, or do anything that she associates with growing up. She also said she does not want to leave me. She has many areas of difficulty, such as reading comprehension, and also experiences anxiety and panic attacks (she takes medication for this). She's even had to take medical leave from school because she could not function, crying all the time, etc. Any suggestions about what I can do?
I think a certain reluctance to grow up is more common within the LD population than we might think. Most of us remember the transition from high school into life as an adult as a time of excitement and open horizons, but for the young adult with LD it can be a particularly frightening time.
I have a chapter in On Their Own called, "The Fearful Student," about this very topic. When writing about young adult who has found a level of comfort in her school and at home, I said, "In her daydreams she may see herself spending the rest of her days in high school, living at home, with no scary changes coming her way and nothing to upset the balance. That's understandable. The future is scary, and change is scary, and some of us deal with them by ignoring them or pretending they don’t exist."
I think back to another of NCLD's LD Talk sessions, "Students with LD: Transitioning to Post-School Life," when Dr. Arlyn Roffman, a professor of special education at Lesley University, was asked a question similar to yours. I cannot improve upon her advice. A mother wrote to ask about her son who was afraid to leave home and begin an independent life.
Arlyn advised the mother to respond to the young man's fear by getting him to talk to his parents, a teacher, or a counselor at school who could reassure him that he would not be cast out on his own and set adrift before he was ready. This may strike some as an unnecessary step, and that the child already knows we would never throw him or her out. But do they? Teenagers are not renowned for clear, logical thinking. On one level, yes, your daughter surely realizes you would never set her adrift but its possible she may also be unable to control that lingering anxiety that tells her that her life of security and routine is coming to an end. Easing these fears would help to (as Arlyn said), "unstick" her enough to start expressing some of her interests and dreams for the future. She then suggested a formal evaluation for the child to help him or her discover what those interests might be.
The evaluation should include an "Interest Inventory" and a hands-on vocational assessment, which evaluates both skills and aptitudes.
Young adults with LD believe that their mom or dad are going to live forever. My question is how do we convince them that they have to be prepared to take care of themselves and accept responsibily for their future?
I dealt with this issue in my first book Laughing Allegra in a chapter called "When I am Gone." I think there's a little denial about a parent's mortality in most young adults, not only those with LD. However, the fear may be a little more intense in those who have been so dependent on a parent’s guidance and support for most of their life.
Rather than using your own eventual demise as a motive for independence, you should focus on independence for its own sake. The goal is to create a life for your child that does not succeed or fail based solely upon your presence. Ideally, these adults should be able to live on their own regardless of whether you are here or not. Of course, there are side issues involved with your mortality as well. For instance, Allegra had a difficult time understanding the concept of death, and it became a problem when her grandmother died. I came up with an image of her grandmother going off to lunch with her friends, as she did most days, only this time in a truly heavenly place. Allegra could relate to that, and it gave her some comfort.
"Whatever it takes" is my motto in these matters. Another aspect of mortality may be the most important of all, and that is estate planning. I go into this a lot in On Their Own with advice on how to set up a Special Needs Trust and the differences between a Will and Trust. Of course, the work on estate planning only involves the parents at this point, though eventually, it could have the greatest impact of all on your child's financial future.
How should I react when a child with LD figures out that they can use their disability as an excuse and how can I (and other adults) tell when the disability is really the problem and when it's just a way to avoid having to work hard or do something they don't really want to do?
Great question, Donna. So many of us in the LD field, whether a parent, advocate or both, tend to paint an idealistic portrait of those with LD or ADHD. To hear us, you'd think we were talking about angels rather than living human beings, but the truth is they are as flawed as the rest of us, and sometimes they try to get away with things they shouldn't.
Over the years Allegra has used her disability as an excuse to get out of doing something, and most of the time I call her on it. Alessandro, her brother, calls her on it too. In fact, he does it more than I do. I'm still a little sympathetic, even when I know she's trying to pull the wool over my eyes.
The trouble with this comes further down the road when they try to do the same thing with an employer or college professor, who may not be sympathetic at all. Another thing to watch out for is ego-centric behavior - another result of being the focus of attention for so long. This too can cause trouble down the road.
My question is as a parent of a 20 year old with LD. My daughter is studying philosophy at university. She is intelligent and very critical of herself.I find that she has a difficulty in doing several things at a time as would be required of any student staying at university. She is very stressed out in trying to cope but she keeps at it in order to prove to herself that she CAN do everything. How do I help without sounding 'patronizing,' as she constantly accuses me of?
First of all, congratulations Bela on what appears to be a successful start to your daughter's college career. It sounds like she is not only trying to prove to herself that she can do everything, but she may also be trying to prove it to you. That puts you in a difficult situation. Any help you offer is obviously viewed as criticism or "patronizing" instead of what it is. I suggest you take a step back, Bela. Let someone else discuss this with her, a relative or a family friend.
Another option is a life coach. These are professionals whose sole purpose is to help people sort out their lives, either professionally or personally, depending on where the problems lie. For instance, a life coach could talk your daughter and analyze her daily activities to see if she might find a more efficient way to get her schoolwork done.
I'd like to broaden my answer to include other parents in a similar situation to yours. I urge all of you to take a hard look at your own role. Many of us have a tendency to become a "helicopter parent" - that is, someone who hovers over their child, watching their every step and telling ourselves that we’re really only there to help. (By the way, I do not exempt myself from this category! I have had to struggle with this since Allegra left my home.) We are so used to living with a child who needs constant attention that it becomes a monumental task to let go of our role as mother-in-chief. It's so ironic: we spend years and years trying to help them gain independence, and the minute they do, we're right there beside them, trying to hold them back.
Try to let go. Take a step back. Make yourself a cup of tea and let someone else take over for a change. If it doesn't work out, you can always start your helicopter engine again and hover in for a closer look.
My Question is: Can I get my GED if I was in special ed. from 2nd grade through 11th grade? I grew up in Tennessee but am living in Arkansas now.
Absolutely, Patricia! Think about this: 39 out of every 100 students with LD drop out of high school. It would seem that all doors for educational advancement have slammed shut for them, but that’s not the case at all. The GED opens those doors. 95% of all colleges and universities in the US recognize the GED and consider those who pass the GED to be at the same level as someone who graduated with a high school degree. Those with documented LD or ADHD are entitled to accommodations similar to those they had in high school or, if diagnosed since leaving school, whichever accommodations are deemed appropriate. You’ll have to fill out Form L-15. You can get the form at your local GED testing center. I go through the various steps in On Their Own. You may also want to go over this with someone at the testing center as they have fairly strict guidelines. Good luck, Patricia!
How do you think the parent should support the young adultchild searching for their first job out of college? Do you have any recommendations for parents whose children are in their late 20's and 30's and are not yet economically self-sufficient due to job failures?
Hi Dale - from your own work, you know the challenges faced by young people with LD or ADHD when searching for a job. You undoubtedly have seen the frustration many parents feel about this issue. And by the way, I'm one of those parents. Without question, Allegra's inability to find and keep a job is the number one issue that keeps me on the phone with her day after day, nagging, cajoling, and pleading, often without effect. So many issues go into "job failure," whether it's social skills, an inability to follow directions, etc. We then have the added problem of low self-esteem brought on by losing those jobs. This only makes the prospect of going out to look for another one all the more daunting. That's Allegra’s situation now.
Parents can and should do all they can to help their child find a job. I have a whole section about the workplace in On Their Own as it is such a huge factor in the life of an adult.
One interesting thing I discovered is that many experts recommend the adult with LD or ADHD look for work in a larger company. I always assumed Allegra would do much better in a small mom-and-pop type of operation, but that's not necessarily the case. In a small company, employees may be expected to be a jack-of-all-trades and handle a variety of tasks. In a large company, they may be assigned a single task. Often the task may be routine or repetitive, which is something that those with severe LD can handle quite well, and generally prefer. Larger companies also fall under the rules and regulations of the ADA which has helped make them receptive to hiring and working with those with disabilities. State vocational rehabilitation agencies can also help those with disabilities find work.
As for parental support, I think that has to be decided by each family. What can they afford to do? What are they willing to do? This can be a very prickly issue, especially for those parents of a young adult who chooses to stay home and do nothing rather than try to find a job. Maybe some ground rules should be set. "I'll help you out but only if you make an attempt to find work." One job counselor I spoke to said that unemployed young adults should be encouraged to think of the job search as an actual job. "Your job right now is finding a job," is how he put it. Getting a resume together, going on interviews, looking through the help wanted ads onlineall of these become part of a daily work plan.
I was born with a learning disability, specifically dyscalculia. I have exhausted almost every effort to confront my problem with mathematics. I am at a point in my life that I need to graduate from college however I cannot function in a college math course. What help can you give me in my situation? I am going nowhere at all like this.
I sympathize, Ron. Math has always been a huge challenge for me (I've never been diagnosed with dyscalculia, but it wouldn't surprise me). Unlike you, I am not facing any type of math requirement in the near future - thankfully! I don’t know of any specific college to recommend, but surely there must be one in your area that can waive or alter the mathematics requirement.
I know of one college graduate who was able to avoid calculus and algebra by taking a science class that did not require math at all. I see that you already attend Loredo Community College. I checked their Web site and see they have Student Support Services and a Learning Center. I suggest you visit both as they will be able to make suggestions and provide guidance. Remember, these schools want you to graduate and will go out of their way to help you find the help you need.
My daughter had LD diagnosed in elementary school. She graduated from HS & community college, and was accepted at Florida Atlantic University. The program 'took away' her LD rights saying her records from the schools she attended were too old and that she needs to have new tests done. Is this legal? Her disability didn't go away! She works very hard. The state community college had no problem with the school records Why is this a problem now? Can you give me some direction to protect my daughters rights?
One of the great frustrations for parents of adults with LD is the maze of bureaucracy, red tape, forms, rules and regulations we're forced into - and it seems like it happens with every simple little thing we try to do. Your question illustrates this perfectly. The school's actions seem arbitrary and unfair, but in fact, they are following their own requirements.
First of all, they did not take away your daughter's LD rights - no one can do that. But I'm afraid that what they have done is legal. When your daughter was in high school, she was covered by IDEA, the Individuals with Disabilities Education Act. After high school, she fell under the ADA, or Americans with Disabilities Act. While her high school IEP records were enough for the state community college, it seems that the University requires more up-to-date records. Had she gone directly from high school to the university, her high school documentation (if current, meaning that it was done withing the past year)would probably have been enough, but once a year has passed since high school graduation, most colleges require up-to-date testing.
Another potential stumbling block is the testing itself. Some of the measures used for students in high school are not normed for use with adults, and so colleges might ask for more valid and reliable measures (given your child's age) to be used as part of the LD documentation process.
I know this isn't the answer you hoped to hear, but rather than spend more time and energy in frustration and anger (justified though they may be!), you should have your daughter reevaluated so she can get the accommodations she needs. You can find help by using NCLD's Resource Locator. I wish I could have given you a more satisfying answer. Your daughter works so hard, and I’m sure you have spent many years trying to guide her through the systemif it helps at all, there are many thousands of us out there who have faced similar frustrations. Sometimes I wonder if "grin and bear it" should become the official motto of parents of a child with LD.
Despite the fact that my child has not been receiving the services that are mandated by the IEP, my eleventh grader is now on the way to graduating in 2008 with a Regents Diploma from a NYC High School. My child would like to go on to college and one day become an attorney. I was told that colleges say that they support students with disabilities on paper, but when a student is admitted, it is not the case. My question is: Are there colleges and universities that admit students with disabilities and truly support their mandated Individual Educational Plans (IEP), and where are these programs located?
Congratulations to you and to your daughter! Your child has obviously done a lot of hard work and is well on the way toward success in college. When you say "I was told" you don't say who did the telling. Whoever it is, they were wrong. Oh sure, you can find colleges that say they support students with LD and then do not, or professors who don’t believe LD actually exists, but for the most part, colleges and universities who say they offer support services actually do so. In fact, there are some colleges that unquestionably support students with LD as every single student there has LD.
You may want to look over my answer to Bela Raja's question above as I covered some of the same ground. Alsoand I'm if I understand you correctly when you write of the college's "mandated Individual Educational Plan," but the IEP only covers her through high school. Once she leaves high school, she falls under the ADA which says that every student has equal access to education.
Regardless of whether a college of university offers minimal supports to students with special needs or has a very involved program that provides an entire menu of options to address social and academic concerns, remember this: your daughter needs to take the first step! Colleges are not obligated to 'find' students with LD. Help your daughter to be prepared to speak up, find the resources she needs on or around campus, and be prepared to negotiate with professors and others to ensure she gets the help she needs (when she needs it!).
My son is a senior in a public school. He dropped out of school this past March after missing days of school and had issues with the school. He wants to return after seeing his class gradute. I spoke with an administrator of the high school and she said she would give him another chance and that he needed to enroll for summer school. We have a meeting tomorrow with the prinicipal. My concern is that they won't let him return due to the fact he just turned 18 years. What are his rights in returning to his school and graduating?
I can't speak to the specifics of your school, Dolores, but it sounds like you already have a fairly strong indicator from the administrator that the school will accept your son back again. If for some reason they don't, do not give up! I'm afraid I don't know much about age requirements and the legal right to return to school, but let's take the worst case scenario. Let's say that the administrators back out of their promise and refuse to let him graduate. All is not lost. Your son can always take the GED, which is the equivalent of a high school degree (please refer to my answer to Patricia's question above). Good luck to you both!
My daughter will be 29 years old on July 4th, 2007. She has a learning disability and I need help at this point and don't know where to go from here. I would like to talk to someone more in depth, but don't know who to call. Can you help?
You should start by looking around on the NCLD Web site. You can find a wealth of information, including resources in your area. You might want to consider joining an LD membership organization such as your state's LDA (Learning Disabilities Association of America.) They have chapter meetings where you can meet others in similar situations to your own. As for talking to a professional NCLD's Resource Locator can point you in the right direction.
One of the great challenges (and disappointments) with adult services is the lack of funding and therefore lack of staffing, and this seems to be the case throughout the country. Of course, there may be variations, depending on the type of services and location, but overall, I've been frustrated by the difficulty of finding effective services for Allegra. Even the medical community has presented difficulties. I can't tell you how many times I've said out loud, "Now where do I go? Now who do I turn to?" In fact, one of the reasons I decided to write On Their Own was to help parents discover the few services that I found. It seems to me that graduation day from high school marks an end to society's interest in young adults with LD. That sounds harsh, I know, but experience has shown that its harder to generate interest in an adult with LD than for a small child with LD. But that doesn't mean we should give up, or end our search for help and answers. Help is out there, but it takes a little more effort to find.
As for a young adult understanding their own challenges, this is very important as it is the foundation of self-advocacy. As I wrote my answer to Bela above, life coaches are a wonderful resource. They help the young adult learn about their strengths and weaknesses, and how live with and manage their own LD. You already know about your daughter's difficulties, but sometimes an outside eye will give you and your child more insight and a better understanding of the situation.
From where you sit, Lisa, it may seem doubtful that colleges of any kind will give a child with LD a chance. But guess what? Every year, hundreds of colleges give young adults with LD a chance. The College Board has a college locator on their Web site.
Peterson's Guides also publishes a book called Peterson's Colleges With Programs for Students With Learning Disabilities Or Attention Deficit Disorders (it’s 650 pages long, so we can assume they’ve found quite a few for you to check out!). The The K & W Guide to Colleges For Students With Learning Disabilities or Attention Deficit Disorder is another helpful resource.
Also - before you dismiss the possibility of your daughter taking the SAT or ACT, have you considered having her request accommodations? Thousands of students with LD take these tests and score well once they receive accommodations such as extended time (usually time and a half) or taking the test in a separate room. The key is to carefully follow the procedures for requesting accommodations and to get all the needed documentation and paperwork in early. You still have plenty of time as she hasn't entered Senior year yet...but don't wait until a week before the SAT to request help!
Hi Gwen. I'm not sure if I understood whether or not you are making the call for your son or if he is making the call himself. You can refer back to my answer to an earlier question regarding the issue of disclosure.I assume from your question that the employer is already aware of a disability of they are planning on hiring someone under and apprenticeship who's on SSI.
In this case, it doesn't like a disclosure would come as any kind of a shock. Even so, you should help your son learn ways to use a positive approach when self-advocating. You can use role play, where you play the employer and your son plays himself. Ask him question about his abilities. Play devil's advocate and ask him very hard questions - the ones we all hope an employer will NOT ask. This way you can see how he handles himself, and also prepare him for the possibility of a tough question coming his way.
First of all, you should not fill out the application for him. His life is going to require writing of all kinds, and if you try to do it for him, what happens when you are not around? I suggest he type the application - that way his illegible handwriting will not be an issue.
This brings up the larger issue of Letting Go. I have run across several parents of college aged kids who have written the essays for their child’s entrance exams. One mother went so far as to move to the town where her son went to college so she could do his homework for him. Now surely we can all see the end result of this!
There will come a time when the young man is asked to answer a question on his own, and Mom will not be there. In this age of computers, illegible handwriting is not the problem it once was.
We now should touch upon the issue of disclosure. In general, I take the view that disclosing LD in a job interview is probably not a good idea. There’s no telling if the LD will have any impact on the job at all. But perhaps in your son's case, it might be a good idea to disclose that he has dysgraphia (a learning disability in writing). He could also talk about the accommodations that could help him so the problem is minimized.
For example, using a computer or a software program that turns speech into written words. It is important that job applicants learn how to self-advocate in a positive way that shows the employer they understand their own challenges and how to accommodate those challenges.
That concludes our discussion for today. Thanks to everyone for the thoughtful questions and thanks to our expert, Anne Ford, for her time today.
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