Is this book for you?

Do you have an invisible disability?
Does someone in your family live with AD/HD, dyslexia, Asperger’s Syndrome/Autism Spectrum Disorder, a learning disability, or an affective disorder like depression?
Are you or an invisibly disabled person you know in college or preparing for college?
Are you the parent of an invisibly disabled child whom you would like to eventually prepare for college?
Are you an educator or support staff for disabled students?

These are the people who are the primary audience for this book.
While the title might indicate that only those who are going to study science, technology, math, or engineering might find the book useful, this is not the case. STEM fields are singled out because many of the invisibly disabled students who study in these fields are very intelligent and may not have developed study habits prior to leaving high school. Regardless of if a student has or needs to develop study habits though, this book provides guidance and information for invisibly disabled students, their families and supporters.

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This handbook can help families prepare a younger student years in advance of the child’s entering college, by giving insight into the changes in academic expectations a student will face, and changes in legal status that a family will face. It can also help teachers and aids realize the kinds of independence that a range of disabled students need to develop prior to graduation.

If a student is already in college, then the book will be helpful in knowing who students and families can talk to for different types of academic and emotional support. Families may for example, know about the disability support person on campus but are they aware of the learning centers? Do they realize the importance of the Housing staff? Do families know when is it appropriate for parents or caregivers to intercede on their student’s behalf? How can a family assist their student in obtaining the support the student does need?

For those working in higher education there are insights provided regarding the challenges different disabilities present for students. Medications wear off, brains function differently when processing the same types of information, while the majority of disabled students live with multiple disabilities.

Containing some of the ‘insider’ knowledge of how higher education works, this book is a handy reference for students and families. It also provides insight for educators who may not realize what families are facing in preparing their invisibly disabled student, or the particular challenges that invisibly disabled students face when learning and living.

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http://www.jkp.com/search/index.php?s=christy+oslund

Available now directly from Jessica Kingsely Publishers or through booksellers.

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How MOOCs can assist disabled students.

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There is increasing buzz about the potential of MOOCs (massive open online courses) to making education available to everyone. As MOOCs are offered by schools like Harvard and MIT, some people have proposed that this is the future of education. Students need to keep their feet firmly planted on the ground however, and remember:  no one is yet offering, 1) MOOC degrees or 2) jobs to people educated through MOOCs.

MOOCs do offer university level instruction to people who due to distance, cost, or interest in only very specialized topics are not able/willing to enroll in full time study at a university. MOOCs have another potential value, which I am not seeing people discussing. Invisibly disabled students could potentially use MOOCs as study tools before enrolling in and paying for a class for credit.

Consider for example a student who needs one math class for their degree, but who struggles with math. Taking a MOOC class like college algebra would allow the student to prepare. There are also pre-college algebra classes offered, if a student needs more foundational work before taking their for-credit university class. The MOOC class will not count for degree purposes, however, the practice the MOOC class would give in learning and working with concepts might be the precursor to success that a student could use. MOOC classes can also be repeated without cost, so that a student could repeat a class until they are comfortable enough with the content matter to take the class for credit.

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This is an area of educational preparation where MOOCs may prove to have something valuable to offer to invisibly disabled students who are seeking degrees. Enrollment in the MOOC classroom is unlimited, just as there is no limit to how many times a student reviews an open source class. In other words, a student can repeat the same class if needed to prepare for content matter they struggle with. This obviously is not a way to prepare for an entire degree, however, it can be useful when a student struggles with a specific class.

If you are a student who struggles with certain types of learning, then consider looking into the availability of MOOC classes which would allow you to work with concepts before you take a similar class for credit. And for families who have a student who desires a college education but who still needs to practice social skills before leaving home, MOOC classes provide access to educational practices that can be used at home, before the student relocates to a university or college away from home. MOOCs real value is in continuing education and in educational preparation. Once we recognize their value for what it is, we can see how MOOCs can be another tool in preparing invisibly disabled students for college success.

Summer Classes – New topics, re-do poor grades, or not-at-all?

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Depending on one’s school, summer semester may be the same length as all other semesters, or it may be a compacted semester. For example, some schools offer concentrated classes that do not meet over as many weeks but that do meet for a longer time period during each class session. If one is taking this kind of concentrated summer class there are some decided things to be aware of, particularly if one lives with a disability that impacts his or her learning.

The best strategy for summer classes may be to focus on repeating classes that were nearly passed the previous semester, or that one passed with a very low grade. Improving the grade in these classes will improve a student’s overall grade point average (GPA) which helps a student maintain good academic standing – academic standing impacts a student’s eligibility for financial aid, as well as whether or not a student will end up on academic probation or suspension.

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This also makes financial sense if one considers that it is more cost effective to privately borrow money during a shorter summer semester, should they have temporarily lost their financial aid due to grades. While tuition costs may stay the same, housing/food costs will be lower for the shorter summer semester. By re-taking classes that one failed earlier, during the summer, a student may be able to re-qualify for financial aid by the beginning of the fall semester.

When is retaking a previously failed class during a shorter semester not a good idea? When a student struggles with the material, or the way the material is taught. In these cases a student may benefit from retaking the class during a standard length semester so that they have more time to work with the information, tutors/learning centers, and their memories. Many disabilities impact memory and limit how much a student can memorize in a short period of time. In these cases, taking an abbreviated class in a subject area a student struggles with is often not a good idea.

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Memory, availability of tutors and sometimes limited summer hours in learning centers are also reasons why it is often not a good idea for a student  to take challenging-to-them new classes during the summer. Professors are still required to cover the same basic information, homework assignments, and assigned readings during the shortened semester as they do during a regular semester.

I do sometimes meet students who mistakenly believe that because a summer class might only last half as long during a summer semester as it does during the ‘regular’ school year, that the professor will assign only half as much work. This simply isn’t so. Students need to have the same preparation at the end of the semester for the classes that will follow, regardless of what time of year they took a class. Whether a semester is seven or fourteen weeks long, students need to know the same material and obviously that puts more pressure on a student, their memory, and their anxiety level.

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Summer is often a good time for a change of pace. Students should consider developing their work experience during the summer; this may include apply for an internship with a company. Even if a job is outside a student’s area however, the experience gained through working is valuable for a resume – work with the Career Services office on campus if unsure how to ‘fit’ work experience onto a resume. And remember – “work” does not have to be paid to belong on a resume. If a student has no luck finding a paying job, then the student should find an organization they can volunteer for that will help them build up their work experience.

Summer may also be a good time to take a class through a local community college that is not the student’s primary school. Students can check with their primary school’s registrar’s office to make sure any class(es) they take will transfer. Summer may also be the best time to get some a student’s physical education requirements taken care of with a swimming, rowing, sailing, or golfing class.

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The “real” me: with medication or without?

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I’ve been doing research for my latest book and was interested to find studies are showing that students who take medication for AD/HD are conflicted about their identity. These students seem to be absorbing larger social impressions/myths that imply that some kinds of medicine are less valid than others.

While starting medication from a young age can allow a student to suddenly focus in class, students are also being impacted from a young age by the social myth that goes something like this, “Normal means being who you are without taking medication [unless you need medicine for life and death], so when you take medication for AD/HD you aren’t behaving like your normal self; you only are your normal self if you aren’t taking medication.”

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Obviously there are a few problems with the myth that says we aren’t our normal self when we take medicine, or that medicine impacts our identity and makes us someone else; that the behavior we exhibit when taking medication is not our ‘real self.’

In order to make it clearer why I think this is problematic, let me compare this version of what it means to be ‘normal’ or authentic, with what it would mean to be Type One diabetic and to not take insulin. We understand that people who need insulin and do not take it are more likely to have serious health impairments and that they will potentially die. So as a society we do not label someone who takes insulin as more or less their true self – we say they need to take insulin to maintain their health. As a society we suspend judgement about the person’s ‘authentic’ identity and tend to think that someone who is diabetic is their regular self while taking their insulin.

Yet, when someone takes medicine because of a health issue that affects their mental state, we seem – as a society – to be quicker to make judgements about the person: about how normal they are, about who they ‘really’ are; as if a person can be separated out and  should have to choose between being authentic, or being healthy. We don’t seem to be as quick to accept that a person can be their authentic self while taking their medication to remain healthy, or to function to their potential when the medicine impacts mental states. This seems most true for AD/HD medication but applies to a lesser extent to medications given for unrelated mental health issues (depression, anxiety, etc.)

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We’re giving young people in our society a very troubling message, and studies are showing that young people are absorbing this message. As a society we’re saying that there are medicines we see as being legitimate, and medicines which we see as enabling poor study habits, unruly behavior, and medicines which enable people who should be able to just ‘pull themselves together’ to get by without the effort other people put into life.

As parents, caregivers, and educators, we need to promote the idea that a medication that assists a child in being healthy, productive, and happy is not a crutch. Nor is the child less him or herself when taking their medicine. Just as our behavior will change if we don’t sleep for several days in a row, or our behavior changes if we consume a lot of sugar at once, our behavior can change under many circumstances. We remain ourselves, even when our behavior changes. Medicine may impact our behavior however, the medicine does not make us less real or genuine. We remain our true selves when we use medicine to assist our quality of life. We are not less genuine, less normal, or less our ‘real selves’ when we are using medication.

Of course, some people will always choose to not use medication and I certainly believe that individuals have the right to make choices. An insulin dependent diabetic who chooses to stop using insulin will have dramatic consequences. Young people who choose to stop using medication as they become adults entering college will also find they face some dramatic consequences; when any person stops using a medication that their body is accustomed to, both their health and their study habits will be significantly impacted. One’s body will react to any sudden change in chemical balance.

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Whatever medication a young person is accustomed to, if they are planning to stop using the medication on even a trial basis in college, I would suggest they begin this trial stoppage before college begins. At least allow one’s body the summer in between leaving high school and beginning college as an opportunity to begin the adjustment – I would also recommend staying in contact with a health care provider during this transition as any sudden change in body chemistry can threaten a person’s health.

Parents need to understand that they cannot force a student in college to remain on medication. Again, I would suggest families allow their students the summer months to practice what it is like to function without medication, so that students have some idea of what to be prepared for in college. I also recommend that anyone stopping their medication because they feel their identity/personality is impacted by the medication, work with a counselor. Identity is complex and fluid. We all tend to reach a point in our lives when we question who we are and what makes us our genuine selves. Students who have been medicated from a young age are increasingly finding this an internal debate that needs to be worked through and families can assist a young adult by making sure he or she has the necessary counseling support to assist talking through their concerns.

To recap: medicine is a valuable advancement that allows individuals to live a quality of life that is not possible without medication. Not everyone, however, will always choose to use medication, particularly if they are concerned that the medicine they take impacts their identity – their sense of self and personality. In cases where a person is questioning their identity due to the impact medication has on them (or on their behavior) then families can be supportive of counseling which helps a person work through the issues they are encountering. As a society, we can support the idea that a doctor and patient are best able to judge the medication a person legitimately needs and as individuals/groups we can spend less time and energy second guessing medical judgements about medication. The average person is not qualified to determine if someone really needs to take medication – leave that judgment to people who are qualified; when you hear someone else second guessing a person’s need for medication, then remind them that the doctor’s opinion is more valid than their personal bias.

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Whatever our personal bias about medicating children, particularly children living with AD/HD – we need to stop voicing these opinions in front of children. We, as part of our larger social groups, are having a negative impact on how these children view themselves. We, as individuals, can be the source of improving the social climate these children grow up in.

 

Who made your child’s diagnosis, how was it arrived at, and does it matter?

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Recently I’ve had people send me several news stories about the over-medication, or inaccurate medication of young people.

(Examples: “Drowned in a Stream of Prescriptions” – this story is about an ‘adult’ child and therefore different from the younger children I’m speaking of in what follows in this post. http://www.nytimes.com/2013/02/03/us/concerns-about-adhd-practices-and-amphetamine-addiction.html?emc=eta1&_r=0

“Attention Disorder or not, pills to help in school” – a story of pills being used to make up for over-crowding and other school and social issues.

http://www.nytimes.com/2012/10/09/health/attention-disorder-or-not-children-prescribed-pills-to-help-in-school.html?pagewanted=all)

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These stories prompted me to think — does the average busy parent, (possibly with more than one disabled child to care for), even have an opportunity to stop and think about the qualifications a doctor needs to accurately diagnosis a disorder like AD/HD? Even if a doctor is qualified to make the diagnosis, did the doctor take the time and go through the necessary steps to accurately diagnose a child? Or did a doctor take shortcuts that led to a quick best guess? Is a doctor ‘just trying’ medication to see if it helps; in this case ‘help’ being shorthand for getting a child to focus more at school.

Unlike antibiotics, which arguably aren’t going to leave a person any worse off if prescribed when not needed, anti-depressants, and the stimulate medication usually prescribed for AD/HD, can both lead to dangerous outcomes if given to a child who doesn’t have a medical need that warrants these drugs.

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What I am suggesting today is that when parents are given a diagnosis of depression, or AD/HD – or any other disability that a doctor feels requires medication – that parents ask what diagnostic tests have been given that helped the doctor arrive at this diagnosis. Particularly with AD/HD it isn’t enough for even a qualified doctor to just talk to the family or give a quick questionnaire about a child’s symptoms. Along with a full medical history, a doctor should give a child a range of diagnostic tests before arriving at an AD/HD diagnosis. The actual tests may vary slightly between health care providers, but there should be some ‘proof’ that supports the clinical diagnosis.

Depression and other affective disorders are more complicated to diagnose, in that there is not a set of standardized tests that can necessarily be applied to reach an accurate diagnosis. This is why it is important to seek out professionals who are qualified to make the diagnosis: a psychiatrist or neuro-psychologist who works with young people is the sort of professional I would seek out to work with a child. The qualified doctor should take a complete medical history of a child including the child’s family medical history, ascertaining if there is any family history of affective disorders.

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The doctor should also have follow up meetings with a child, particularly if medication is prescribed, to accurately judge how a child is responding to the medication. Finally, depression and bi-polar disorder both respond best when medication is accompanied by talk therapy – if a doctor is prescribing medication and not requiring follow up talk therapy you need to find a different professional to treat your child.

A qualified doctor making a legitimate diagnosis of a mood disorder, AD/HD or similar disorder and finding a useful medication to prescribe to a child can be a life safer. Parents as always, however, have to be their child’s advocates. Do not allow someone to medicate your child without having first done ample medical tests to ascertain that the medication being prescribed is treating a disorder your child actually has. The right medication is only ‘right’ if it treats an illness or disorder that one lives with.

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Parents supporting students at college: Part Two – Housing and Independence

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Where will a student live when they go to college?

If they stay in their local area, then they may be able to stay at home. Depending on a student’s disability and how they are managing their transition, medication, and independence, a year at home that further supports the transition to independence might be a good idea.

Sometimes though, dorm life is a good idea for supporting independence, even if the student is close enough to live at home. Moving to a dorm allows a student to be responsible for getting themself up and to class on time, taking their own medication without reminders, being responsible for their own laundry etc. Even if a student remains living at home during their first year at college, families should be encouraging the kind of independence that includes these same specific skills.

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This may mean parents clenching teeth when a student is sleeping through class however, students need to learn the consequences of missing class including failing grades.

Families are not helping students in the long run if the only thing that ever gets a student out of bed is a parent. Students have to learn to be responsible for such things themselves if the final goal is for the student to live independently. Ideally, a student will have practiced getting up, doing laundry, taking medication while still in high school but life isn’t always ideal.

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When it is time for students to apply for housing at a university, some parents choose to take on the responsibility of filling out the housing application for their student. I would suggest that it is better to work with the student then to fill out the application for the student. Again, this is a step towards independence and if the student isn’t ready to fill out the application by him or herself, then they probably aren’t ready to live away from home either.

Some families tell me their student is too busy to fill out the application. A student’s life is not going to be less busy once they are a full time college student and learning to manage multiple demands on their time is something families can help students with by helping them make the time to fill out their housing application. Think about it this way – students have to learn to prioritize the most important events over lesser events – having a place to live is a priority over most other activities, including sporting events and extra curricular social events.

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While in college a student may choose to live off-campus at some point. Parents may provide emotional support and advice during this process, they may even accompany their student on visits to potential apartments. Remember however, that this is another step in gaining independence; the final decision is the student’s decision as are the final consequences. If the student chooses a building that has a great social life and as a result their grades start to suffer, the student has to learn how to re-balance their social/academic life and parents will not be able to oversee this process.

The other main thing families can remember is that with university dormitories, students are still in a supported environment – the housing staff is specifically trained to work with young people making the transition to independent living. Rather than stepping in to “fix” problems with the housing staff, families can encourage their student’s independence by discussing issues the student may run into, (perhaps a problem with a roommate) but then encourage the student to follow through on the steps that are necessary to resolve their issue without the parents becoming directly involved.

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For example, if a student has a roommate issue, they can discuss this with the housing staff person responsible for their living unit (floor, hall, building) – there are levels of such staff, whose purpose is to help students resolve conflicts: Resident Advisers, Community Advisers, Professional Staff etc. When families would like more information about such staff and related processes they can now find this information on web sties; go to the university’s web site, find the link for Housing, and then read over the related housing web pages to find out what processes your student does have available to them. You can then advise the student about the process, without having to step in and implement the process yourself.

On or off-campus, a student who is in college needs to start putting into practice the independent living skills that are part of becoming a self-sufficient adult. Families need to remind themselves that it is generally better for students to live through a few bumpy moments at college, sorting out their problems without parents jumping in to ‘fix’ things, if students are going to be well prepared to adjust to the next step of their life – living independently as a working professional.

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