Should You Get a Van Wheelchair Lift? by The Mobility Resource

October 14, 2012

A van wheelchair lift can be a great way to increase your mobility and freedom. It’s one of the most common, useful pieces of accessibility equipment. You could consider it the quintessential handicap van feature. But lifts are more expensive than ramps. Some even require structural modifications to your vehicle. So how do you know when it’s time to invest in this accessibility equipment?

Upgrading to a Van Wheelchair Lift 

Maybe you’ve been doing alright getting in and out of your van on your own. Maybe you’ve had assistance from a swiveling vehicle seat. There may have been a little pain or more exertion than you care for. If your condition or impairment is getting worse, if access is getting harder or if you’re becoming more reliant on your scooter or wheelchair, it’s possibly time to install a van wheelchair lift.

Or, perhaps you’ve been making do with a wheelchair ramp for entering and exiting your vehicle. If your chair is manual, it can become increasingly difficult to get up a ramp and to control it on the way down. If a caregiver pushes you up and down the ramp, its practicality depends on his or her continued ability to do so. For aging couples, for example, a ramp can become too much of a strain for the ambulatory person.

Photo of wheelchair van-lift

When to Get A Van Wheelchair Lift

When deciding whether it’s time for a van wheelchair lift, consider how often you need to take your wheelchair or scooter with you. If you’re becoming increasingly dependent on your mobility aid, your life will be much easier with a lift on your vehicle.

Lifts let you skip the struggle of getting in an out of the van or up and down a ramp. They make it convenient and effortless to take your wheelchair with you on every trip, whether it’s around the corner to the store or cross-country. Wheelchair or scooter lifts facilitate maximum mobility everywhere you go when your ability to get around is dependent on an assistive device.


Take Advantage of Free Resources for Bipolar Disorder by Healthline

August 23, 2012

College can be difficult enough without the strain of a mental illness, medication and appointments to keep track of, and having to navigate the world of medical resources alone – perhaps for the first time ever. That is why it is essential to know how to find assistance with managing bipolar disorder at whatever college you choose to attend.

Although large universities often offer comprehensive student health centers (and even limited free counseling sessions with a therapist), many small schools may have fewer services to promote. Whether you attend the nation’s largest state school or the country’s smallest private institution, you can patch together a network of support resources for bipolar disorder. Just keep in mind that in addition to the myriad free resources for managing bipolar disorder, most students with bipolar disorder will still require visits with a mental health professional and a regular prescription medication.

Prepare Yourself for Managing Bipolar Disorder at School

1.    Connect with the student health center. Even if you will remain on private or government insurance and visit an off-campus provider, it   is advisable to familiarize a school physician with your condition and treatment plan. Ask about local support groups, free resources, and emergency contacts.

2.    Search for a local support group through the list of support groups and therapy groups maintained by the MADI Resource Center http://www2.massgeneral.org/madiresourcecenter/moodandanxiety_finding-support_supportgroups.asp. Even if sessions are not available through your university, many local support chapters are offered on a regular basis and are open to the wider community. If one is available near your school, get connected early and ask them for advice about other local resources.

3.    Take advantage of the Internet. The web is perhaps the best way to get free assistance with coping with bipolar disorder during college. Free information hubs, like Healthline’s Bipolar Disorder Resource Center, offer tips on managing relationships, explaining your condition to friends, and even handling your condition at work and school. Furthermore, online resources like this can keep you updated on the latest (free!) therapies for bipolar disorder management, such as creativity therapy and yoga.

4.    Adopt healthy lifestyle habits that are non-negotiable. Part of managing bipolar disorder well involves developing and maintaining healthy habits. This means following a regular sleep schedule with plenty of rest, exercising regularly, and getting involved with a “good” crowd. Developing friendships with people who will help keep you healthy and accountable during episodes of mania and depression can be a critical safeguard for your health and wellbeing (and criminal record!).

5.    Find a dirt-cheap technique for self-therapy. Identifying a free way to manage your emotions, ups and downs, and the stress from school and your illness can literally be a lifesaver. Experiment with creative ways to harness your frustrations and express yourself. Consider blogging, painting, bodybuilding, dancing, cooking, hiking, kickboxing, and other hobbies that allow you to let off steam without spending money or engaging in risky behaviors.

6.    Join an online bipolar disorder discussion forum. Many bipolar help sites offer free online chat rooms where you can discuss your emotions, questions, and experiences with other bipolar students or adults who have struggled with the same challenges that you will experience. Take advantage of their advice and don’t be afraid to ask questions. To make forums even more valuable, commit yourself to a regular time session, with daily or weekly time periods of participation.

Regardless of the free methods you choose to supplement your care plan at college, be sure that your choices work for you and your lifestyle. If you don’t enjoy taking the time to scrapbook or talk with others about your experiences, you won’t really get the advantages out of these free therapy options. Experiment until you find a combination that supplements your treatment plan and fits your tastes and preferences, and don’t be afraid to try new activities on for size. Being a college student with bipolar disorder can actually be affordable, fun, and exciting – especially if you make day hikes and chat rooms a part of the experience!

For more information on affordable ways to manage bipolar disorder during college and adulthood, visit Healthline.com’s Bipolar Disorder Resource Center


The Continuity of Physical, Social, and Cognitive Development

July 22, 2012

By Gavin Broomes of One Giant Leap

 

 

Symbol for continuity consisting of intertwined colored images traveling counterclockwise in a circle

 

I have devoted a great deal of time and words to specific topics, issues, and protocols and have strayed slightly from my overall central message.  Although I resist cliches as much as possible, ¨seeing the forest through the trees¨ is one that is unescapable when dealing with rehabilitation or any issue related to health care and health-seeking.  From a more ¨tangible¨ perspective, the central message should be very clear:  Continuity of all tissues is the overwhelming fundamental understanding that all formulation should be based on. In other words, it is impossible to ¨dis-entangle¨ muscle from tendon, ligament from joint capsule, periosteum from aponeurosis…although most textbooks conveniently separate them with different colours, they are synonymous with each other and therefore function in unison.  Despite this seemingly inuitive statement, I am consistently baffled at the lack (or disregard) of common sense when applying this to the formulation and implementation of treatment protocols.
With this in mind, I introduce a more global and philosophical discussion on continuity and how it relates to any and all those who are directly or indirectly affected by disease or disability (which, by the way, includes almost ALL of us).

Disease and disability are such complex and comprehensive states that it is nearly impossible to objectively navigate oneself while keeping a solid focus on ¨the big picture¨…therefore, society and the medical community have conveniently ¨cleaved¨ off 3 essential branches off of the developmental tree:  Physical Development, Social Development, and Cognitive Development.  I have already stated that the overall magnitude of disease and disability is quite overwhelming, therefore I do not fundamentally disagree with this convenient division…in fact, it permits more efficient ¨digestion¨ of information and priorities.  My main point of contention is the following:  Most consider each of these branches as seperate and distinct objectives.  This applies to both the healthCARE and healthSEEKING population.  Quite often, development strategies are implemented without any consideration as to how it affects the other 2 domains…and the naive assumption is that if you simply add three strategies together, you will get an obvious summation of benefits.  In reality, most people evaluate physical development strategies based on age-appropriate ¨standards¨ while attempting to shield themselves (or their loved-ones) from undue social challenges, and base cognitive strategies on some professionals percieved impression of cognitive performance.  I understand that this may all be dizzying…therefore I will make my central point:  Physical, Social, and Cognitive development are intimately linked with each other and reside within the same continuity.  

 

Photo of person in a wheelchair playing tennis

 

 

Again, for some this may still be intuitive and well understood…therefore I will deconstruct this message further and explore, not only a fundamental reality of existence, but how each relates to the other and how effecting change in one cascades to the others. 

I think it is important for me to point out that I assign EQUAL importance and relevance to all three components…however despite this, the reality and understanding of some fundamental hierarchy should be understood and accepted.  To be precise, the physical state (or status) plays a critical role in the development potential of social and cognitive skills.  

I consider the relationship between social and cognitive development to be much more symbiotic and intimate…meaning that each are very much dependant on each other, whereas physical development exists more as a ¨catalyst¨ for improvement potential as well as sustainability.  In other words, physical ¨competence¨ serves as the environmental and ¨nutritional matrix¨ for the others.

Physical, Social and Cognitive Flowchart

 

To expand on this philosophy further, we will need to enhance each of the three relationships further.

Social-Cognitive:  As mentioned before, this is the most intertwined and inimate interaction of all.  Much of the cognitive potential resides in the ability to effectively assimilate into some level of social acceptance or recognition.  In addition, the climate / environment on a social level (regulation, social stigma, etc) must be well established and in place in order to promote active cognitive development in a healthy and productive manner.   Conversely, cognitive improvement and success contribute to the development of social parameters such as self-esteem and self-confidence.

Physical-Social:  This relationship is perhaps the most tangible one simply due to the fact that it is quite ¨visceral¨ in both the positive and negative way.  From a negative perspective, physical disability is unfortunately still quite often stigmatized and therefore has detrimental effects on the development of fundamental social skills and confident.  In addition to this, the varied physical limitations themselves often limit the accessibility to social opportunity.  The positive perspective is more straightforward in that physical performance, confidence, and improvement contribute directly to the cultivation of social acceptance, opportunity, and development.

Physical-Cognitive:  This is by far the most elusive realtionship.  Many disabilities, despite the current plethora of information and apparent ¨understanding¨,  are associated with some level of cognitive deficiency…or to be more precise, it is perceived that there is some lower level of cognitive function.  There are many examples that could be highlighted, but I think it is more productive to elaborate on some nuances that are often overlooked and under-appreciated.

-The fundamental ability of proper head control can not be overstated.  In order to concentrate and apply effective focus, the head needs to be consistently level with the horizon…even if the rest of the body is moving.  In other words, the absorption of  information is dependant on the ¨stillness¨of the head which permits effective tracking of the eyes.
-Management of fine motor skills is essential for the use of both standard or technology assisted devices in order to tap maximum potential for learning.  More importantly, the establishment of consistent gross motor function is a fundamental precursor and requirement for basic performance at all educational levels.

Although quite simple in nature, these two examples still go underappreciated.  Engaging in reading and writing activities (at any level) while expending large amounts of focus on maintaining eye contact, head position, and balance is extremely disruptive…and therefore unfairly challenges learning performance and potential.

The final step is to then consider all three as a conglomerate…and therefore base your long-term rehabilitative strategy on the cultivation of the continuity as opposed to addressing each on its own.  When this relatively under-appreciated approach, it becomes much easier to establish short, medium, and long term objectives…formulate some form of ¨roadmap¨ for each person and immediate family to follow…and enable a positive impact that is of IMMEDIATE value as opposed to a ¨defered life plan¨ or objective (¨when he/she is better, things will be ok¨).  

I hope this small rant has been helpful and helps to establish a fundamental philosophy that everyone can understand and resonate with.
Cheers! 

 One Giant Leap Logo

One Giant Leap: The Science of Physical Rehabilitation is a blog dedicated to presenting, discussing and debating scientific concepts in the field of Cerebral Palsy, Physical Rehabilitation, and High Performance Training.  The Blog can be found on the web at http://thescienceofphysicalrehabilitation.blogspot.com.ar/ and on Facebook at http://www.facebook.com/pages/One-Giant-Leap-The-Science-of-Physical-Rehabilitation/247330191983662

 


Q and A with Professor Everilis Santana

June 18, 2012

This is a summary of a recent “Questions and Answers Session” that We Connect Now (WCN) had with Everilis Santana (ES), an Assistant Professor at Bristol Community College in Falls River, Massachusetts, where she teaches courses in Mathematics.

BCC Logo green background

WCN – As a professor, have you had to accommodate students with disabilities, and if so, describe the process that results in the accommodation?

ES – At Bristol Community College, there is a Dean for Disability Services. This is a high level position that works with the issue of disability services and accommodations and gives visibility to the issue within the organizational structure of the institution. At Bristol, the student has to assert his/her right to receive an accommodation by personally delivering the letter of accommodation to the professor.  Personally I think it is good to request this step as part of the accommodation process because it personally involves the student and prompts that the student advocates for herself/himself.  Once an accommodation has been established tests are administered to the student providing for the approved accommodation(s).

At the beginning of my career as a professor I taught at North Hennepin Community College in Brooklyn Park, Minnesota, and there the professor learned about a student accommodation through a notice of an accommodation that came through intra-office mail. At times I did not know who the person was that was receiving the accommodation. At North Hennepin there is a testing center where most of the students receiving accommodations take their exams so the testing environment is more uniform and centralized than if the tests are administered in different spaces on campus.

WCN – What types of disabilities have you had to accommodate in your classroom?

ES – I have had blind students, and students with Asperger Syndrome, traumatic brain injury and general learning disability.

WCN – Have you ever been approached by a student with a disability for him/her to make you aware of his/her needs?

ES – Yes. A student with Asperger Syndrome approached me and gave me a pamphlet about his condition. I think that it is a good idea that helps professors become more educated on issues that affect individual students.

WCN – What types of accommodations have you administered as a professor throughout your career?

ES – For a student with a learning disability, I have given extra time to answer the tests, up to double time.  For a student with Attention Deficit, I have administered tests in a reduced distraction environment and for a student with Traumatic Brain Injury it has been allowed that the student have access to the class notes during the test. I have also divided a test in parts and administered it at different times and tests have been given in Braille. Accommodations during class, and not just for testing, include preferred seating and the use of a notetaker.

WCN – Are there some resources or procedures that you have used during your professional career that you believe are helpful in serving college students with disabilities?

ES – Here at Bristol, we use a form that provides the professor with questions about the performance of a student with a disability that is receiving accommodations.  The professor fills out the form and sends it to the Disability Services office. The filled out form gives them an idea of the progress in the student achieving academic success.  This form gives an idea of the effectiveness of the accommodations in the student’s academic performance.

WCN – In your opinion, are students with disabilities well integrated and visible within Bristol?

ES – Yes, they are visible and vocal in the classroom too.


Interview with Barbara Briggs, Attorney with Legal Aid Society of Palm Beach County, Inc.

May 23, 2012

 

 

Scales of Justice icon

 

 

 

We Connect Now (“WCN”) recently sat down with attorney Barbara Briggs. Ms. Briggs is a graduate of the Georgetown University Law Center where she was a Public Interest Law Scholar.  Ms. Briggs presently serves as the Supervising Attorney with the Legal Aid Society of Palm Beach County, Inc.’s Educational Advocacy Project.

WCN – What is your general background?

BB – Special education, both undergraduate and graduate work and a law degree. I taught for eight years, high school, junior high and elementary school.

WCN – How did you get involved with special education law?

BB – I was working with a law firm in Washington, DC, Hogan and Hartson.  We were working at that time with the McKenzie Group on certain matters.  The niece of someone with the McKenzie Group had a mental illness and was in school in Maryland. The niece really disliked school and was involved in non-safe activities. We were able to get her placed in a residential school with psychological services and treatment. The folks at The McKenzie Group told me I should be doing this full-time.  I moved to Florida and started practicing in the area of special education law, originally in private practice.

WCN – Where do you work now?

BB – I work for Legal Aid of Palm Beach County, a 501(c)(3) nonprofit corporation.  I have been there for 15 years, since 1997.

WCN – Who are the clients that you work with?

BB – A lot of my clients are from poor families that don’t believe in mental illness. Untreated mental illness can look like aggression.  Sometimes the initial diagnosed act of mental illness can be perceived as a criminal act. I had one client who was a very mentally ill young man who has schizophrenia but his family didn’t believe in mental illness.  They wouldn’t keep him on his medication. He kept getting into trouble.  He is now in adult prison.  Disability is an equal opportunity leveler, but middle class kids can get treatment and don’t end up in the system.  Lower-income kids don’t get the treatment they need. Studies show that people with disabilities such as learning disabilities or mental illness make up 11-16% of the general population but 60-70% of the population in jail. A student with this type of disability has a six times greater chance of ending up in the criminal justice system than does the average student.  My clients are more male than female. Boys tend to manifest disabilities louder while girls are more withdrawn and less likely to be diagnosed.

WCN – What should parents know?

BB – They should educate themselves on the IDEA [the Individuals with Disabilities Education Act] and the IEP [Individualized Education Program] and how to effectively use this. With a good IEP, a kid is less likely to end up in the juvenile justice system.  IEP’s need to change over time. If kids aren’t making progress, the goals and objectives need to change.  More, or different, related services need to be provided.  IEP’s are written annually. If kids are not learning then you need to change things around to make it better whether it’s a different setting, or additional assistance. You need to keep amending the IEP until the definition of a FAPE [Free Appropriate Public Education] is reached.

WCN – What is your role in the process?

BB – The parents retain me. The parents generally exercise the IEP rights on behalf of the child until age 18. I review the records and go to the IEP.  Sometimes I am appointed by the Court.

WCN – What is the IEP?

BB- It’s the plan that determines what special education and related services a student with a disability will receive and what goals, objectives, accommodations and modifications are going to be the focus of the child’s schooling that’s written on a yearly basis.

WCN – If you could amend current law to add additional rights or powers, what would you add?

BB – I would want the federal authorities to fully fund special education.

I would also add a provision limiting the ability to use the school police/sheriff’s office to intervene against kids because the acting out is often a manifestation of disability. They use police as a tool to get the kids out of school.

WCN – Do you think that charter schools are adequately serving students with disabilities?

BB – There are many charter schools in Florida. The research at the state and the national level indicate they are not the answer. The quality of charter schools is uneven. They are far less regulated.  Charter schools accept less than 5% of the overall population of students with disabilities, and usually only those with mild disabilities.  There are some charter schools specifically for students with disabilities, but those are the exception, not the rule.  Overall, students with disabilities are being left out of the charter school movement.

WCN – Do many of your clients go to college?

BB – Very few go on to higher education.  They have a hard enough time getting through high school.

WCN – What is the most difficult part of your practice?

BB – Seeing my clients go into the delinquency process or to jail. I’ve also lost a couple of clients.  One young man shot himself. Another young woman went to a dance club, where she was an innocent bystander in a shooting, and died.

WCN – What are your favorite cases?

BB – Winning reimbursement for families.  It’s the kids that keep me motivated. I really like what I am doing. Nothing is static. It’s a roller coaster. Things get better based on good leadership and good economic times but nothing ever stays like that. Now are particularly bad economic times. There have been no raises in a year and teachers are not paid well to begin with, so recently it has been a struggle to get kids what they need to succeed.


We Connect Now’s Recent Guest Blog for the Amy Speech and Language Therapy website.

April 17, 2012

Visit the Amy Speech and Language Therapy website and check out our guest blog “What Makes We Connect Now Unique Among Organizations Serving College Students With Disabilities” which is posted at  http://www.amyspeechlanguagetherapy.com/1/post/2012/03/what-makes-we-connect-now-unique-among-organizations-serving-college-students-with-disabilities-by-gabriela-mccall-delgado-the-creator-of-we-connect-now.html The website focuses on issues related to speech and language and includes other useful links and blogs.

 


My Experience With Beep Baseball

March 30, 2012

Drawing of a wooden baseball bat

by John Miller, A Volunteer with We Connect Now

Standing at the plate, I bounce the bat lightly on my right shoulder as I anticipate the coming action. The pitcher asks me to take a couple of practice swings, so that he can get a feel of where in the zone he should try and place the ball. “You’re gripping it too hard!” he says as I squeeze the bat as though the next swing might well send it flying. “Loosen up, or I might accidentally break your fingers”.

In this modified version of baseball, called beep baseball, both the pitcher and catcher are on the same team as the hitter. Their object is to get me to actually make contact with the ball on one of approximately five throws.

Finally, I settle in and prepare for the real thing. The pitcher says “ready?” and I pull the bat back and assume my stance. Then he says “ball!” and releases the fairly large, beeping orb so that it covers the few feet between him and the plate. The aluminum makes contact, sending the ball almost immediately to the ground where it rolls away into the grass.

As I hurtle toward whichever of the two bases has been activated, (I have to listen for a low buzzing sound,) I hear someone in the field shout a number. These numbers range from 1-7, and they represent zones in which defenders for the other team are placed. Callers, as those in the field who give the numbers are known, have several tactics for informing the fielders of what may happen with any given hit. If the ball is in the middle of a zone and rolling on the ground, that zone’s number is simply stated. If it is hit short, the zone number is called twice in rapid succession: “five! Five!” If the ball is rolling along the line between two zones, both numbers are stated quickly: “six! Seven!” Finally, if, and this is incredibly rare given the size of most standard beep balls, the pitch has been launched into the air, the caller extends the length of the number as it is stated: “seevveenn!”

Basically, I am aiming to reach the base before someone in that field manages to grab the ball and display it to the umpire. If I get to the base, it’s a run. If they get the ball first, it’s an out. The real fun usually happens in the field, where arms are likely to get stepped on, heads can make contact with turf, and one must often sacrifice his or her body in order to stop that ball in time. It’s almost a combination of baseball and football, because of the high amount of contact that is involved. And, as in any other sport, persons playing beep ball have experienced their fair share of injuries.

My explanation of how the game works was accurate in the league in which I played, covering an area in North and South Carolina. I was on a team called the Charlotte Hornets, the original Charlotte Hornets as they so often point out. I played until my level of hearing reached a point that doing so was no longer feasible. I think that other beep baseball leagues have their players run to and deactivate cones, but I’m not really sure how this works as I never played in such a league. Also, if any individual has usable vision, then he or she will be made to wear a blindfold in order to play.

The social aspect of it, the bonding that occurred after an unlikely win, the disappointment I experienced following a bungled play, all those elements made the entire experience worth it. It’s one of the best ways I know of for blind and visually impaired persons to truly experience the dynamics of playing a team sport, and I highly recommend that especially younger individuals try it out.

For a more in-depth discussion of beep baseball, listen to Serotalk’s Tech Chat 96 which was dedicated to the subject at this link:

http://www.serotalk.com/2011/04/10/tech-chat-96-beep-baseball-teamwork-rules-dedication-and-fun/


Is Adult ADHD a Disability? by LuAnn Pierce

February 20, 2012

There is much confusion about ADHD – many are unsure it even exists, and some consider it an excuse for bad behavior, procrastination, disorganization and missing deadlines. Until recently, the diagnostic criteria for the disorder did not include older adolescents and adults. The American Academy of Pediatrics changed the ages for diagnosis of ADHD from ages   6 – 12 to ages 4 – 18 (and above) in late 2011.

College students and adults in the workforce who were not diagnosed when younger often find themselves struggling in adulthood. Many who were previously treated have stopped taking ADHD medication, hoping to outgrow the symptoms after puberty, as doctors once believed. They are often surprised when they begin to have similar problems as adults. Frequently these adults need to be officially diagnosed (again) and treated for adult ADHD to keep their jobs or save their grades.

Russell Barkley and others have reported 65-80% of kids with ADHD continue to have symptoms as adults. Sadly, only 10% or so receive treatment; gratefully, that seems to be changing. More recent research on adult ADHD supports the diagnosis, hence the change in diagnostic criteria. Without treatment the outcome is bleak for many adolescents and adults.

ADHD and Employment

The ADHD Awareness Coalition, spearheaded by CHADD, ADHD Coaches Organization (ACO), ADDitude magazine and Attention Deficit Disorder Association (ADDA), conducted a non-scientific survey last year and found disheartening results. Over 2,000 adults participated in the survey. 60 percent said they had lost a job due to ADHD symptoms. “More than 36 percent reported having 4 or more jobs in the past 10 years, and 6.5 percent responded they have had 10 or more jobs within the past 10 years.”

Clearly, finding the right job and career path to fit your specific needs is critical to success. Ask for accommodations; sometimes even minor changes can make the difference between success and failure in college or the workplace. As one who was too ashamed to ask for ‘special treatment’ (allegedly, because I didn’t want anyone else to ‘think’ I had problems), I can tell you it’s best to address your denial and come to terms with reality sooner, rather than later.

Coming to Terms with Invisible Conditions

Coming to terms with any kind of disability or difference is an adjustment. It requires honesty, courage and letting go of who you thought you were. Counseling may be helpful to work through the grief and other issues related to the adjustment period. It took over 50 years for me to accept that my ADHD is truly disabling without the right support and accommodations.

I have chronicled the ‘most’ major event that triggered my coming to terms with ADHD in a free ebook if you are interested in more details. There are also links to information about the legal protection, accommodations, advocacy and other relevant information in the article Adult ADHD and Self Advocacy:10 Tips for Facing Giants.

How Do I know if I have ADHD?

Not everyone who is easily distracted, disorganized or disruptive has ADHD. Likewise, many adults who have ADHD are undiagnosed or misdiagnosed. I was treated for anxiety for two years before my therapist realized that I had ADHD in the early 90s. Numerous confounding variables make it difficult to diagnose this disorder, ie., over half of adults with ADHD also have anxiety, depression and sleep disorders.

Here are some red flags and nuances to look for:

  • ADHD is genetic. There is up to an 80% chance that children will have the disorder if a parent has ADHD. Many adults don’t realize they have ADHD until a child in the family is diagnosed.
  • ADHD begins in childhood unless the symptoms are caused by a head injury or other environmental factor. In most cases, you are born with ADHD or not. Some believe that many babies who are oxygen deprived at birth and/or born with forceps may develop learning disabilities, ADHD or other mental health problems. The same is true for many babies who are exposed to alcohol or other drugs (including tobacco) before birth, and toxins such as lead paint after birth. Head injuries can result from abuse, accidents such as falling and other seemingly minor insults to the brain. All of these and other environmental factors are believed to cause brain damage, which often shows up as problems with learning, attention or mental health, though it may go undetected until a child enters school.
  • ADHD is a misnomer. People assume that an attention deficit means that people are unable to focus at all. Most people with ADHD can be very focused or ‘hyper-focused’ on things they find stimulating, ie., video games, movies, music, reading, typing, etc. When someone is hyper-focused, he or she appears to block out almost everything around them and have difficulty transitioning from one task to another.

When not stimulated externally, the pre-frontal cortex of the ADHD brain is seeking stimulation. It is believed that the neurons are not firing fast enough, hence the need for external stimulation. I heard two different doctors describe ADHD as caused by a ‘sleepy brain’ that literally causes people to shift and move around to stay awake. The brain can be stimulated by medication, exercise, mindfulness or other meditation, fidgeting, chewing gum, knitting or crocheting, playing an instrument (particularly drums) or other stimulating activity. Different things work for different people.

  • There are three types of ADHD – Hyperactive (the more obvious kind), Inattentive (dreamy, disorganized, procrastination, seemingly unmotivated and often mistaken for laziness by outsiders) and Combined, a combination of hyperactivity and inattention. Since these manifest very differently, identifying the less obvious Inattentive Type can be difficult. Those who have symptoms of both (me!) seem to bounce from one to the other. Hyperactivity is more easily recognized in children. In adults, it appears more as restlessness, impatience, fidgeting or wiggling.
  • Keep in mind, ADHD symptoms may be mild, moderate or severe. The severely hyperactive person, who is always late, harried and in a hurry every day looks very different from a mildly or moderately hyperactive person, who bounces his/her foot or taps her fingers all day. An mildly inattentive person who can’t seem to start on projects or find her address book, presents differently from the severely inattentive one who can’t see over the piles on her desk, forgets to pick up the kids from school and sends email to the wrong person at work.
  • A diagnosis of ADHD doesn’t mean you have all of the symptoms. It is also important to realize that many of the symptoms are present in everyone to some degree. The determining factors for diagnosis have to do with age of onset, level of impairment in daily life (work/school, relationships, etc.) and the cluster of symptoms that are not related to another medical or mental health condition. There is a lot of overlap between symptoms of ADHD and anxiety, Bi-Polar Disorder, so finding the right diagnosis is critical to finding the right treatment.

If you aren’t sure, but some of these challenges resonate with you, ask your medical provider or see a mental health practitioner for an assessment (preferably the latter). College counseling centers deal with these issues a lot. Don’t wait until your papers are late and grades are dropping to ask for help. Transitions, like going away to college, add stress to an already difficult situation. The change in structure and support may exacerbate ADHD.

LuAnn Pierce is a licensed clinical social worker and writer/blogger. She previously served as Teen Editor for selfhelpmagazine.com. LuAnn has published online articles for multiple publications. Additionally, she has published materials for non-profits such as the National MS Society, including several books (Growing up Sane: In Uncertain Times – 1997) and curricula (The Rest of the Story: Psychosocial Skills for Youth Develop – out of print). She works with dailyrx.com (1-800-THERAPIST) as a contributing expert and writes two blogsites. LuAnn has a small private therapy practice in Denver.   


Guest Blog by Liz Donohue (CoRDS)

February 18, 2012


Last week I went back to high school.

My friend and co-worker, Paola Vermeer, a scientist studying head and neck cancer at Sanford Research, was presenting to junior high and high school students during their school assembly. But this was not just any presentation.

Paola, or Pay was talking about a rare disease, called Multiple System Atrophy.

Pay’s mother recently passed away from Multiple System Atrophy, a progressive, neurodegenerative disease commonly referred to as MSA that she had been battling for 9 years. This was a very painful experience for their family as Pay’s mother was healthy at age sixty. Her health went into significant decline in the last 2 years. Pay created a YouTube video (http://www.youtube.com/embed/t-Db2cMgvSs?rel=0)that outlined this decline and the challenges they faced so she could share the experience with others who may be struggling to support a loved one with MSA.

Pay is brilliant. With a PhD in developmental neurobiology, she is an expert in her area of research. But what was absolutely amazing is how she intrigued and mobilized over 400 junior high and high school kids at 8:00 am last Thursday morning by talking about a complex neurological disease that affects only 50,000 people in the country.

Pay would say it was the candy or treats she handed to students that incentivized students to come down from their perches in the bleachers to participate in an activity but I have to disagree. It was a series of well thought out events that made it a successful learning experience for these students.

Pay started by asking students to come down and form a circle if they knew anyone with Breast Cancer. She moved down the list from more prevalent diseases like Diabetes, Colon Cancer, Parkinsons Disease to rare diseases Duchenne Muscular Dystrophy and Cockayne Syndrome. She explained how unrelated diseases such as cancer and Parkinsons Disease actually have more in common than we think and by studying one, we learn about the other.

Next was the amazing video created by Jeans for Genes (http://www.genesareus.org/filmlibrary/), of a darling 6 year old girl named Ellie who explains Cockayne Syndrome, a rare genetic disease affecting her younger brother, Tom. In a cute British accent, Ellie explains that Cockayne Syndrome is an autosomal recessive genetic disorder that Tom has, which makes his life harder. If you haven’t seen it already, it is truly a must-see.

Then came Tim’s shoe, a globe-trotting Nike Sneaker made famous by a group of teenage kids who played a prank on their friend Tim. Like Paola’s presentation, there is more to Tim’s shoe than what meets the eye. Tim’s shoe raises awareness for MSA everywhere it goes as it is covered with personal mementos from everyone who sees it.  Anywhere Tim’s shoe goes, it is photographed and posted to the Tim’s Shoe Facebook page (https://www.facebook.com/pages/Where-is-Tims-Shoe/348809933762). Since arriving in Sioux Falls it has not been further than 50 ft from Pay since she requested it be sent from her friend Rita in Belgium. Pay has taken Tim’s Shoe to schools, research centers, support groups, and medical centers. The goal is to raise awareness that MSA may be under-diagnosed or mis-diagnosed, that there are no treatments, and that although the disease may be rare, that doesn’t make it any less important than a disease that is common – three elements that are shared by people with rare diseases/three comments that I hear so often when contacted by patients and families of rare diseases about the CoRDS Registry.

Pay’s message to the students was simple and clear:  It is not RARE when you are affected by a rare disease. Once you are affected by a rare disease, it is no longer rare to you.  Rare is only a matter of perspective. What Tim’s friends have done with his shoe for MSA is an example to all of us.  You don’t need to do something expensive or flashy to be extraordinary and impact people the world over. It is a message to set aside complacency and become active in and around your community. Ignore that voice inside that says “what can I do?  I’m only one person?” because Tim’s friends prove that you can impact people, you don’t need the support of an institution, organization or foundation. YOU as an individual can make a difference, no matter your age or the resources you have.

Tim’s shoe was not fancy, expensive, or time-intensive but has been incredibly effective at reaching many people thanks to our digital age of camera phones and social media.  Currently Tim’s Shoe has 2000 Facebook followers, numerous YouTube videos (http://www.youtube.com/watch?v=Mx7Fw7P9seI), and thousands of images and has reached thousands of people. It is awareness campaigns like Tim’s shoe that open up communication lines to talk about rare diseases, empower patients to share their story, mobilize individuals to raise money to fund much-needed biomedical research that will help us understand the etiology of these rare diseases so we can develop better treatments and ultimately cures for these devastating conditions.

Last Thursday afternoon, we heard from the principal of the school.  Apparently several fruitful discussions took place in the classroom and not surprisingly it was not only about the delicious candy. Rather, it was discussion about rare diseases: teachers and students sharing stories about knowing someone affected by a rare disease and even students expressing interested in future careers in biomedical research.

Pay is just one person and limited time. Tim’s friends did not have many resources, either. However, they all saw how devastating MSA is to an individual and their families and wanted to increase awareness of this devastating condition to help those who are affected by MSA. They used a simple idea, took action and changed the world…. and so can you.  With Rare Disease Day coming up, there are many things you can do to raise awareness for any or all of the 7000 rare diseases that affect  nearly 1 in 10 Americans that are affected by a rare disease. 

My list of TOP 5 easy ways to raise awareness for Rare Diseases:

  1. Watch the video narrated by Ellie provided by Jeans for Genes (http://www.genesareus.org/filmlibrary/)  in your / your child’s classroom
  2. Take a photo of your denim jeans and post to Global Genes Project  on Facebook (https://www.facebook.com/globalgenesproject?ref=ts) Learn more about Global Genes Project here (http://www.globalgenesproject.org/)
  3. 3.     Use classroom lessons or activities on genetics developed by our friends at SanfordPROMISE and Sanford CoRDS (http://www.sanfordresearch.org/cords/), the Office of Rare Disease Research (http://science.education.nih.gov/customers.nsf/MSDiseases.htm)
  4. Visit NORD (www.rarediseases.org) and print off a Handprints Across America sign. Take pictures wherever you go and post them to your Facebook wall. We started doing this at Sanford Research and posted to Sanford CoRDS Facebook page (https://www.facebook.com/media/set/?set=a.208043239285910.47980.165611436862424&type=3) it has been a huge hit!
  5. Join the conversation on Twitter (www.twitter.com). Learn more about rare diseases and organizations and efforts dedicated to rare diseases. Tweet, Tweet and Retweet! To get you started, here are a few to follow: Sanford CoRDS (@SanfordCoRDS) http://twitter.com/#!/sanfordcords, Office of Rare Diseases Research (@ORDR) http://twitter.com/#!/ORDR, RARE Project (@RAREProject) http://twitter.com/#!/rareproject, RareDiseaseDay (@Rarediseaseday) http://twitter.com/#!/rarediseaseday, Inspire (@TeamInspire) http://twitter.com/#!/teaminspire, Marble Road (@MarbleRoad) http://twitter.com/#!/marbleroad. Don’t forget your hashtags: #raredisease, #1mil4Rare, #RDD2012

A list of Rare Disease activities at Sanford Research this month

February 6 – Executive Proclamation of 2/29/2012 as Rare Disease Day City Hall in Sioux Falls, South Dakota.

February 11 – Radio Show on KSOO’s A Better You

February  13 – Radio Show on KSOO’s Viewpoint University

February 252nd Annual Sanford Rare Disease Symposium & Life Science Discovery Program (LSDP) at the Sanford PROMISE lab

February 29 – Global and National Rare Disease Day. Join @SanfordCoRDS for a Tweet Chat at Noon CST.

We want to hear your ideas for Rare Disease Day!

Post your ideas on our Facebook Wall (Sanford_CoRDS) http://www.facebook.com/SanfordCoRDS or Tweet to @SanfordCoRDS http://twitter.com/#!/sanfordcords.


February 15, 2012

Read about a different viewpoint for people with disabilities when they think college.

IndependenceChick's Nest

I’ve heard some people tell rising college students, “College will be the best time of your life.” Well, I don’t know about best time of one’s whole life, but college certainly is a great experience and, I think, should rank right up there. But too often, for students with disabilities, that doesn’t happen. Sometimes, it’s because parents and teachers mistakenly think students with disabilities, intellectual disabilities especially, cannot benefit from college, or can’t handle it. This, however, just perpetuates the view of people with disabilities as permanent children whose purpose is to be cared for more than contribute.

But what about the parents and teachers who do believe students with disabilities can attend college? They’re right, and those students should have a college experience, just as their peers without disabilities do. The sad reality, however, is that even though many universities now admit students with significant disabilities, they don’t allow…

View original post 1,961 more words