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Hello readers,

Today’s “lesson” focuses on Fetal Alcohol Syndrome Disorder (FASD), sometimes called Fetal Alcohol Effects (FAE). FASD made it onto my list thanks to interest from a couple of readers who requested I cover it. So thanks, readers, and here we go.

What is FASD?

FASD is called an “umbrella term” for a range of effects, including lifelong disabilities, that befall a baby whose mother drank alcohol while pregnant. Unlike Down Syndrome and cerebral palsy, FASD is not considered a clinical diagnosis. Instead, an individual known to have fetal alcohol syndrome would be diagnosed with such terms as Neurobehavioral Disorder/Alcohol Exposed, Fetal Alcohol Syndrome, Partial FAS, or any number of other terms. This is meant to reflect the “spectrum” nature of FASD, as well as the differing amounts of alcohol exposure an individual may have had in the womb.

About 40,000 babies are born with FASD and diagnosed with a disorder on that spectrum in the U.S. each year. The symptoms are myriad and unique; much like CP and some other disabilities, two people may present with some of the same symptoms but not all of them. The symptoms an individual presents with often depends on his or her specific diagnosis. For example, symptoms are different for partial FAS than they are for “full” Fetal Alcohol Syndrome.

Are there classical features?

Yes and no. Some people present with certain features such as minor facial differences like small eyes or a thin upper lip. Sometimes the facial differences are more noticeable, and sometimes no discernible physical features exist. Some people are born with their height and/or weight below the 10th percentile for their age groups, and continue to have growth issues throughout life. It’s important to note that while these features can be major markers of FASD, it sometimes cannot be proven that the person was exposed to alcohol. The origin of the features may be traced back to something else, or the cause may be unknown.

Does FASD impair functioning or learning?

To some degree, in many cases. According to depts.washington.edu, FASD is “the leading known cause of intellectual disabilities,” and there can be neurological and functioning impairments. A person with FASD may also have trouble with what’s called “adaptive behavior.” However, the manifestation of these effects depends on how much alcohol the person was exposed to, how much brain damage was sustained, and other factors. Intellectual and neurological impairments seem to occur across all forms of diagnosis, but as with other disabilities, the degree of impairment determines a lot about how the individual’s disabilities will be handled.

Many people with FASD are considered to have “invisible disabilities,” sometimes because their disabilities get blamed on something else. For example, a person with FASD, especially a child, may not be able to connect consequences to actions. Especially in childhood, this can be misinterpreted as the child being spoiled or defiant. Thus, some aspects of FASD are overlooked. Advocacy and self-advocacy for people with this condition is crucial. While that’s true for all disabilities, I’d venture to say it’s even more vital for those whose disabilities are “invisible.”

What is life like with FASD?

Again, it would be next to impossible for me to paint you a “typical” portrait, which is why I lean heavily on research. According to No FASD Australia (nofasd.org.au), basic symptoms may include:

-Learning disabilities and/or difficulties (again, others may not connect this to FASD right away)

-Hyperactivity and impulsiveness

-Inability to connect actions to consequences

-Sensory difficulties/issues, such as disliking particularly loud sounds

-Memory problems

-Social and developmental delays

Can people with FASD be independent?

As with all disabilities, this depends on the person. Independence may be harder for certain people with FASD because of traits like impulsiveness and other neurobehavioral issues. As with other disabilities, people with FASD are often unfairly stereotyped and labeled. The TAB people around them assume they simply refuse to do or be certain things, when in reality they cannot and will not do or be those things. This often leads people with FASD to experience a constant sense of failure, which may negatively influence their behavior and life trajectory. Some people with FASD live in a state of dependence on family and government; others become impoverished or homeless.

Despite this, the picture need not be so bleak. People with FASD can lead fulfilling lives if those around them are educated regarding what they have and what they need. Remember, many cases of FASD involve “invisible disabilities,” so if you are the loved one of someone with it, you must speak up and teach your loved one to speak up. You have options, such as educations tailored to your loved one and an adult lifestyle that accommodates their needs. For example, many people with FASD use memory prompts and clear schedules to help them get through daily life. Like people with certain other disabilities, people with FASD need and depend on routine. They need a support system made up of people who both recognize their needs and nurture their strengths.

Myths and Facts about FASD:

Myth: If you drank during pregnancy, it is your fault the baby has FASD. If you drink while pregnant your baby will automatically have the disorder.

Truth: It is never advisable to drink while pregnant, simply because we don’t know how much alcohol exposure can trigger FASD. However, if you are the mother of a person with FASD, know it is not your fault. You didn’t know specifically what might happen, and no mother worth her salt ever sets out to purposely harm her baby. Remember too, that the effects of FASD cannot always be traced directly to alcohol. In other words, that one glass of wine you had on New Year’s Eve is probably not the reason your child has an intellectual disability or other issues.

Myth: Adults don’t have FASD/you “outgrow” it.

Truth: This is one myth I wish were nonexistent for all disabilities. You do not outgrow FASD. In my opinion, some people may persist in thinking this because they cannot accept manifestations of FASD in adults that they would write off in children. This is unfair and stifles the individual. Adults have FASD and live with it every day. They also have the chance to be independent, productive, and happy if we let them–so let’s let them.

Myth: People with FASD can’t learn/their ability to learn stops at about fourth grade.

Truth: Learning is tough for a lot of people with FASD, and whether you have a disability or not, fourth grade is notoriously hard. You’re reading the blog of a person who failed fourth grade math. This is because the curriculum and learning styles of most schools change significantly from grade four onward. However, learning doesn’t “plateau” then for kids with FASD or any other kids. Kids with FASD may *appear* to stop progressing, but they just need extra support and perhaps different teaching styles. (This is where advocacy comes in, as does the support of things like IEPs, self-contained classrooms as needed, etc.)

Myth: FASD is an excuse for bad behavior. People with FASD could do better if they tried harder.

Truth: This is another myth that boils my blood, because it reduces the person to some annoying oddity who wants and enjoys his or her disability. Nothing could be further from the truth. It’s not that people with FASD don’t want to behave in a socially appropriate way; sometimes they just cannot do it–the same way a person with CP might never be able to walk or speak clearly. Accurate diagnosis, compassion, and support is needed so much!

Myth: People with FASD cannot maintain relationships because they cannot “behave.”

Truth: No; people with FASD do have family members, friends, and even significant others in their lives who love and understand them. Like all people, those with FASD could always use more relationships. Awareness and acceptance makes that happen.

Myth: People with FASD should not have children because the children will get FASD. Anyway, they can’t raise children.

Truth: There is no genetic link present in FASD, and people with it can raise children with adequate support.

Come back soon, readers; I so enjoy sharing these posts with you.🙂

 

And now a brief message from these sponsors (just kidding, we don’t have any).

Have you ever gotten involved in something, like I did with disability advocacy, and then a few weeks or months or years down the road wondered if you were still relevant? I know I have. Just the other day I was thinking about the disability rights movements of the 1970s-’80s, back before we had IDEA or the ADA or any of that. And I thought, “Well, we have all that now. Most people are not actively trying to treat PWDs as second class, are they? I mean, what if I made all this up because I’m just a bitter person?”

And then I got a timely reminder that you, and I, and all the advocates out there: we’re still relevant, darn it!

This happened while I was killing time and letting the recent post on CP percolate, while watching YouTube. I semi-frequently watch a video series called Messy Mondays. These are created thanks to a college student named Jordan who is a Christian and grew up in the Bible belt. They are funny, insightful, and tongue-in-cheek looks at the Christian subculture.

One such video is titled “The 10 Kids You Meet at Youth Group.” In it, Jordan and his friends go over examples like the pastor’s kid, the kid who’s there to play games, the super-spiritual kid, etc. A lot of people wrote in to comment on types that were left out.

I noticed one person wrote in and said (paraphrase):

“The down syndrome kid. You know that kid who wins games for doing nothing and is always hitting you but doesn’t get called out because they’re special.”

I mean, ugh.

  1.  You at least could have capitalized Down Syndrome, grammar murderer.
  2. What, did you see Educating Peter one too many times? (Horrible documentary, BTW, largely because it shows Peter acting in stereotypical ways, such as hitting people and screaming. You know like, “Look, this is what all people with Down Syndrome do.”) No, it’s not, and those who do engage in that kind of behavior need to be reprimanded, but understood as well.
  3. “Don’t get called out because they’re special?” Well if that’s true, that means the leaders have problems, not the youth group member.
  4. Wins for doing nothing–okay, yeah, I’ve seen that one with other disabilities. Some youth leaders, teachers, etc. believe that in order to make PWDs feel included you have to let them win, or get rewarded without effort. In actuality, this is harmful and only perpetuates pity and stereotypes, so quit doing it.

Look, I’m sure examples of this person exist in some youth groups and other circles, but not everywhere. And if it were just that one stupid comment I wouldn’t be posting. But what got me is how several people *agreed*, saying things like, “Yeah, this kid hit me one time with her 2-pound purse and nobody did anything”, “I KNOW, right?” and even, “Down Syndrome kids are a waste of effort if you ask me.” (Which nobody did!)

My point? Wake up and smell the coffee, advocates. You’re still relevant. I’m still relevant. It’s not 1975 or 1982 or even 1990 anymore, but as long as attitudes like this exist on the Internet and in real life, we’ve got work to do. If a person with a disability is still being barred from anywhere–from church, of all places–we’re not done.

We’re still relevant, darn it! So get out there and be relevant.

Hello readers, and welcome back to class. Today’s topic is cerebral palsy, hereafter known as CP. It’s the disability I have, so in some respects it’ll be easy to write about, but I wanted to go ahead and get this one done because, since it is the one I have, I might otherwise forget. So here we go.

What is CP?

Some people believe CP is a purely physical disorder, mostly because it heavily impacts muscle movement, coordination, and things of that nature. However, it is not purely physical, even if the symptoms themselves are (we’ll get to that in a minute). CP is a form of brain damage. The damage occurs either during or after birth, and is classified as a group of disorders because it can affect people in so many different ways. This is one of the disabilities that is most often referred to as “mild, moderate, or severe,” because degrees vary so much. A person with a gifted range IQ, who uses a wheelchair and has visual issues, could have CP. So could a person with impaired speech and cognition whose limbs are seemingly unaffected. So could a person who can walk and talk fine, but has a very difficult time using his or her hands.

According to cerebralpalsy.org, CP is the most common of all childhood disabilities, affecting 3 out of every 1000 births in the United States (although I don’t know why they call it a childhood disability because it’s not like you grow out of it. I guess they mean, “disability you are born with,” but that doesn’t make much sense either). Ahem.

Diagnosis usually occurs in babyhood, with between 8000 and 10,000 babies receiving a CP diagnosis each year. However, sometimes CP isn’t diagnosed until a child is preschool-age. I myself was diagnosed at two. This often happens because again, CP presents so differently for every person, and because sometimes symptoms masquerade as other things. For example, I was a very stiff baby, which is what tipped off my parents and doctor at first. But another stiff baby might have another disability. She might have a muscular disease, or she might just be reacting to something in her environment.

Are there classical features?

No; you cannot tell CP is present by looking at someone. However, there are different types of CP, and these classifications can help you determine what this person might need from you. For example, I have what’s called spastic CP. Despite the connotation of the word “spastic,” this actually means I’m stiff, not that my limbs are hard to control. I have been disparagingly called “stiff as a board.” When I’m a humorous mood, I sometimes call myself the Tin Lady (as in, Wizard of Oz).

Athetoid CP means the muscle tone is actually decreased; this is where you’ll see an infant who seems like a “floppy baby,” or a child or adult who has trouble controlling his or her muscles. I have seen people with athetoid CP whose limbs move on their own accord, or who have trouble doing things like holding up their heads. Again however, degree is everything, as it is with spastic CP.

Finally, there is ataxic CP. This is the form that most often impacts vision, balance, and posture. For example, you guys might remember me talking about my lack of depth perception and peripheral vision. This is due to ataxic CP. I know, “Wait a minute, I thought you said you had the spastic kind.” I do, but I also have ataxic. You can have a mixed type of CP, and one type may affect you more than the other. I have never met or heard of anyone who fits all three categories but I’m sure it has happened or will happen.

Finally, cerebral palsy can affect just one limb or any group of limbs. Some people have demiplegia, triplegia, or quadriplegia (two, three, or four limbs involved). Others have pentaplegia, which doctors classify as involving all four limbs plus head and neck. Other people with CP experience involvement of just one limb, and still others have forms of hemiplegia, where one side is affected more than the other. I’m hemiplegic; my right side is my stronger side.

CP is categorized much further than this on sites like cerebralpalsy.org, but in order to avoid information overload, those are just the basics.

Are there other medical issues?

It totally depends on the person. CP does not automatically mean increased potential for sickness or a decreased life expectancy. It can, but that is highly dependent on the severity of the CP and how the individual lives and functions otherwise. In other words, if you never exercise your muscles will begin to atrophy and you will experience pain whether you have CP or not. However, some people do have health issues tied directly to CP, such as muscle and nerve pain, visual issues, etc. These need medications, glasses, surgeries, and therapy to be treated effectively.

Can CP be “made better?”

As with most disabilities, there is no cure for CP. There are effective treatments like therapy, but as we’ve discussed, these are not cures and should not be overdone. As my father says, therapy is like fixing a dent on a car’s hood when what you really need is a new motor–but you just have to work with the motor you’ve got. My advice to parents and other loved ones of those with CP is, discuss your options and push for schools, workplaces, etc. to do their jobs in providing modifications the law says they must. But do not focus your entire life on, “If we do this therapy, Karen *will* walk someday” or “If we use this medication, Nabeel will stop having tremors and be able to feed and groom himself.” Maybe so, but maybe not. And if not, that is okay!

With all disabilities but, I have found, especially CP, you have to know what your options are and what the person in your life truly needs. I say this because I’ve been offered a lot of modifications and treatments I really didn’t need, so my parents had to be smart about what to take and what to leave. Later, I had to take over that responsibility. Again, this is true for any disability. The reason I bring it up with CP is because not only are no two cases alike, but I’d venture to say you will never, ever find two people with the exact same symptoms. If you put me next to another person with CP you might think, “Wow, their versions don’t match AT ALL.” There are often similarities, but…well, you get it.

What does a person with CP’s future look like?

Again, depends entirely on the person–and the support he or she is given. Independent living, marriage, children…all those are possible, but different supports may be needed. For instance, I want children but am aware that I will probably struggle with the motor skills and physical stamina needed to care for an infant or toddler. Calling all family and friends! As with most disabilities, group homes, assisted living, etc. are options, not the catch-all solution. Many people with CP, including a former colleague of mine, are now able to have caregivers and other aides come into or even live in their homes.

Myths and Facts:

Myth: All people with CP have cognitive/mental disabilities.

Truth: No. Some do (about 50%, last I checked), but these vary greatly just as physical symptoms do. People with CP can get inclusive educations, learn the things their peers do, go to university, or not. As a commenter on this blog once mentioned, we don’t act like it’s the end of the world if a TAB person doesn’t go to college; why is it such a big deal when a person with a disability doesn’t?

Myth: People with CP cannot get around their communities.

Truth: This myth only exists if you let it. People who let it, such as certain business owners, often say, “Well, it costs money to put in an automatic door/an accessible shower in our hotel rooms/whatever.” Well maybe, but what’s more cost effective and beneficial? Having everybody interact in your community, or locking out a whole population?

Myth: CP is a choice; people who claim to have it are just lazy.

Truth: You’d think nobody would be dumb and bigoted enough to say this, but I’ve heard it. It’s kind of an occupational hazard, and I’d venture to say people with other disabilities have heard it, too. This is more than a myth; it’s a dirty lie and it hurts everyone. Crush it.

Myth: My kid will outgrow CP.

Truth: This is actually a more common one than I originally thought, because some people believe that with the right therapies and supports, CP will largely “go away.” Not true; see above. As with every disability, CP doesn’t cease to exist because you turn 13, 18, or 21. In fact, adulthood is when PWDs may need your support–not your therapy, not your meds, but your love and belief–more than ever because some people still erroneously believe all people with disabilities are kids.

Myth: CP is a burden; I cannot provide for my loved one.

Truth: I hear this more with CP than with other disabilities, although no disability is exempt. Financial issues are real and present, and the lack of services can be frustrating or demoralizing if that’s something you run into. I know–I’ve lived it. But that’s why people with CP, and their loved ones, are here. We’re here to live our lives first and foremost, doing what we can do to make the world better like anybody else. But part of making the world better is speaking up and saying, “Some people need help to reach their full potential; let’s provide it instead of acting like help is bad.”

Come back next week for another lesson, readers!🙂

 

Good morning readers, and welcome to “class.” This is Disability 101. In the tradition of my old college professors, here’s a rundown of the “syllabus”:

In this course you will learn:

-Basic facts regarding both well-known and lesser-known disabilities

-Some myths and truths related to each

-How inclusion, independence, and interdependence is being made possible for affected individuals, and/or how it can be made more possible.

Disabilities covered will include, in no particular order:

-Down Syndrome

-Cerebral palsy

-Autism/Asperger’s Syndrome (may be two separate discussions)

-Fetal Alcohol Syndrome Disorder (FASD)

-Muscular dystrophy

-Fragile X syndrome

Any others that present themselves, such as unclassified intellectual disability, traumatic brain injury, blindness, deafness, and so on. You will notice there are more topics listed than there are weeks in August, so be prepared to see more posts than usual. These posts will not be considered “bonus rounds.”

Without further ado, please open your laptops or notebooks and we’ll begin with Down Syndrome.

 

I chose to start with Down Syndrome largely because it is an intellectual disability. In my experience, intellectual disability (hereafter known as ID) is one of the least understood and most maligned disability types in existence. People assume that those with ID cannot and will not have good quality of life and are perpetual children, when neither supposition is true. Let’s examine instead what the truth is.

 

What is Down Syndrome?

Down Syndrome, also called trisomy 21, is a chromosomal disorder that occurs when an individual has an extra set, or copy, of chromosome 21. The extra copy can be full or partial, which may affect the way DS presents itself. According to the National Down Syndrome Society, DS is the most common genetic condition in the United States. It occurs in one of every 691 births; about 6000 babies are born with DS each year. Currently, approximately 400,000 Americans live with Down Syndrome.

Are there classical features?

Yes. Down Syndrome is one disability that is highly visible. Individuals with it have upward-slanted, almond-shaped eyes. They usually have low muscle tone or hypotonia, as well as deep creases across their palms’ centers. Persons with DS also have facial creases or extra skin folds, such as around the eyes. Persons with DS are usually small in stature and may have unusually small features such as ears. However, just because you can easily identify individuals with DS does not make all individuals the same.

Are there other medical issues?

Yes. According to WebMD, about 50% of children born with DS also have heart defects, which can vary in severity. People with Down Syndrome may also have different visual issues such as nearsightedness, farsightedness, or crossed eyes, which can be corrected with glasses, surgeries, and other treatments. People with Down Syndrome often have hormonal imbalances and issues such as hypothyroidism, which can be treated with medication.

Certain people with Down Syndrome may have a shorter life expectancy than is typical. However, again, each person is different. If you have a loved one with DS, don’t assume his or her life is automatically shortened. Instead, work with your doctor (s) to give him or her as much medical support as needed.

The Intellectual Side of Down Syndrome

Ah, now we’re getting into the nitty-gritty. When most people think of DS, intellectual disability is the first thing they think of. They might say things like, “You mean my child is going to be retarded.” Well, first of all, that descriptor is archaic; thankfully, more doctors are shying away from using it. Also, it is vital to note that ID does not equal inability to learn, enjoy academics, or thrive in the world. In fact, many people whose children or loved ones have DS will be the first to tell you their loved ones are smart; they are just smart in different ways than most of us think of it.

According to henryspink.org, most people with DS have an IQ of between 50 and 60, which falls under mild to moderate intellectual disability. However, this number can fluctuate; some individuals have been found to have scores as high as 120. About 1% of individuals with DS have an IQ of 70-80, which is classified as borderline average.

It would be nearly impossible for me to describe what an average education would look like for a child with Down Syndrome. That depends not only on the IQ itself, but how much support and how many opportunities there are for that person. By law, public schools must educate children and teens with DS; whether they do so inclusively and fairly is a toss-up, although positive strides are continually made. To varying degrees, people with DS can read, do math, participate in science and social studies, and do other academic tasks. Many loved ones of people with DS do not classify it as “mild” or “severe,” because they feel–rightly so–that ability is dependent on the person, not Down Syndrome itself. As other disability advocates have said, you are what you learn. If you are taught you are smart, capable, and able to meet others’ needs, that’s what you will become.

Myths and Facts:

Myth: If you are a mother over 35, your child will most likely have DS.

Truth: Although the risk of having a child with DS does increase after this age, children with Down Syndrome can be born to mothers of any age, and they are. Remember too, that statistics are not the be all end all. And, a positive result on a prenatal DS screening does *not* indicate a bleak future for your child.

Myth: People with DS don’t know right from wrong.

Truth: Although some people persist in believing that those with ID have no morals, this is not true. People with Down Syndrome, like everybody else, must be taught right from wrong. They may need help understanding certain intricacies, but they are not prone to criminal behavior, nor are they inherently disrespectful, selfish, or any other negative label you might choose to use.

Myth: People with DS are unemployable.

Truth: People with DS can and do hold jobs and make their own money–if they are given the chance to do so. Fortunately, there has been a movement away from sheltered workshops and segregated employment in recent years. Although people with DS are stereotyped as working primarily in menial jobs, they can do other things. The news is full of stories of people with Down Syndrome who have owned their own businesses, such as a young man named Tim who ran his own restaurant until recently revamping the business to get married. Which brings me to:

Myth: People with DS cannot and should not marry or have children.

Truth: Yes, they can. People with Down Syndrome are attractive (just look at Madeline Stuart, an 18-year-old girl with DS who is also a model). They have sensual and sexual desires just like the rest of us, and they can have successful relationships. Although persons with Down Syndrome and other forms of ID have been forcibly sterilized in the past, it is my hope that we will continue to see that less and less as time progresses. Side note: I disagree heartily with forced sterilizations.

Myth: People with Down Syndrome are always happy.

Truth: No; people with DS experience the same range of emotions everyone does. A lack of happiness or cooperativeness should be seen as natural instead of a sign of “noncompliance” or “behavior problems.”

What a Person with Down Syndrome Needs/What the Future Holds

As with most disabilities, the future of a person with Down Syndrome is up to those who love and support him or her, and are willing to let the individual speak for him or herself as much as possible. If the TAB population relies on worst-case scenarios to give them a picture of DS, we will not progress in our understanding of it.

Students with Down Syndrome are included in the educational system, although the levels of inclusion vary. Let me reiterate: letting a person with DS “visit” or sit in on a class is not inclusion. He or she should be given ways to participate and interact with peers. In other words, yeah, maybe your student with Down Syndrome can’t read and analyze Hamlet, but that is no reason to plunk them in a corner with an alphabet worksheet. Alternatives such as books on tape, condensed Shakespeare, and related activities may be useful.

Be careful when helping adults with DS “transition” from high school into college and beyond. People with DS are not perpetual children; they can and do understand adult concepts if given the time, patience, and specific explanations it may take to communicate them. Although they may have a childlike “cognitive age” or interests you consider childlike, remember that chronological age comes first. If the person with DS in your life is 40, then for goodness sakes, treat them as such. Don’t assume things like, “He frightens easily” or, “She needs help in the bathroom.” It’s demeaning.

Bottom line? Persons with Down Syndrome may need more support than people without it, in terms of living independently, holding jobs, etc. But they *can* do it. More and more people are proving that. We just need to relate to people with DS on their terms. Yes, simplify explanations if you have to. Yes, give them extra time to do things. Yes, work with medical teams to keep them healthy. While doing that though, always remember you are dealing with a whole person, not just an intellectual/physical diagnosis. For as long as they are here, whatever they can do, let’s give people with Down Syndrome the chance to be the best people they can be.

 

 

Hi readers,

I will be going on vacation later this week, and by the time I get back, July will be over. This heralds August, AKA Back to School month. Throughout my tenure as a blogger, I’ve always tried to make this month one in which we focus on how disability impacts the school experience, or one in which we learn new things.

This year will be no different. I’m announcing a brand new series for August, one in which I’ll be writing about the basic facts of some common disabilities. Purposes of this series include:

-Educating both PWDs and the temporarily able-bodied population about disabilities they may encounter or may have seen, but don’t have and don’t know much about.

-Dispelling some common myths about specific disabilities rather than disability in general.

-Encouraging both PWDs and TAB individuals to get to know and interact with various disability communities.

-Driving home the message that all PWDs can have positive quality of life if given what they need most, which often is less about therapy and services than it is about knowing them as whole people.

-Raising awareness of just how common specific disabilities actually are, in the hopes awareness will lead to acceptance.

 

Expect to see posts on well-known disabilities such as:

-Cerebral palsy

-Autism

-Down Syndrome

 

Also expect to see posts and information regarding prevalent but lesser known disabilities and conditions such as:

-Fragile X syndrome

-Muscular dystrophy

-Spina bifida

Will mental disorders such as bipolar disorder be covered: I’m not sure. I tend to try to categorize these separately because of people who assume mental/cognitive disability is the same as mental illness. However, I may provide information to a point, or I may save these for another series.

Will facial deformities/physical disorders such as Treacher Collins syndrome be covered: Not right now. Although the effects of these can lead to certain handicaps or disabilities, I wouldn’t consider them classical disabilities. However, I am thinking about doing some posts based on what I’ll call “non-classical” disabilities such as these.

Can I ask you to post about a certain disability: Yes, please do!

See you soon, readers–bring your school supplies!🙂

Hi readers,

Apologies for the lapse in posts. My computer decided to curl up and die, so I’m using a loaner until the hard drive can be replaced.

In the ’90s, Almond Joy and Mounds had an ad campaign that went, “Sometimes you feel like a nut; sometimes you don’t.” (While I like both varieties, I much prefer Mounds bars. In fact, I ate 320 calories worth of the miniature things one time, in one sitting, while doing a summer stint as a graduate school tutor). Anyway, I’ve come to the conclusion life with a disability is sometimes the same way.

In other words, I think it’s a good thing when we refer to ourselves as persons with disabilities. We are people first, and I think keeping that in mind can, in a lot of cases, help maintain a positive outlook on life and what we can do. But…

Even though a person with a disability is a person first, sometimes they don’t feel it. Maybe I’m just speaking for myself here, but sometimes I feel really disabled.

What do I mean by that, or more to the point, what’s the difference? I think “feeling disabled” occurs when you are overwhelmed because of your disability. It happens when you and/or others around you focus too much on what you can’t do or may never be able to do. (Side note: we all have those things, disability or not). Feeling disabled occurs when you don’t feel empowered, or you don’t have a support system, or you’re just over the whole gig.

While it’s natural to feel like this, I don’t recommend staying there for long. It may make you feel better initially, but you’ll probably end up feeling like a Debbie Downer (or Danny Downer if you’re a guy). So, having felt disabled fairly recently, here are a few tips I’ve found may help.

  1. Acknowledge it. Say to yourself and to others, “I feel bad about having this disability right now.” Routine tasks like therapy or doctor’s appointments may make the feeling worse, so reschedule if you can. If not, be honest with the professionals who are helping you. And if they don’t allow you to be honest, then I say it’s time to find a new team (more on that in the future).
  2. Pinpoint the things that are contributing to how you feel. Maybe you’re bummed because you haven’t met a certain goal you set for yourself, or because you can’t do certain things TAB people can. For example, I feel bummed sometimes because I can’t travel where I want when I want. I’ve felt frustrated and angry because I couldn’t get in and out of my bathtub or in and out of a camper trailer. Sometimes I feel especially disabled because I know certain opportunities don’t exist where I live. Once you pinpoint what’s making you feel this way, you can move on to number three, which is:
  3. Do what you can to change what you can. I got an accessibility bar for my bathroom, and whenever I feel stuck inside the house I tell somebody, “Hey, I need to get out of here ASAP.” As for the opportunities thing–well, some may not exist where you live. But you can raise awareness of this. For example, maybe you’re interested in theater like me. Talk to your place of worship about starting a drama team. If they aren’t interested, go to your community theater. If, as happened to me, they refuse to give you parts, look into theater or singing opportunities in nearby cities, and be vocal (though not obnoxious) about your desire to get there and participate.
  4. Remember that some things you cannot change (the Serenity Prayer comes to mind here). Prayer, meditation, and counseling may help you come to terms with those things; don’t be afraid to seek help. Also, never assume “there’s nothing that can be done” unless you’ve tried all avenues. If you have, don’t be down on yourself. *Everybody* has things they can’t change, which brings me to:
  5. Remind yourself of the things you can do that other people can’t. This isn’t an effort to tear down the temporarily able-bodied; the goal is to level the playing field. Too often, PWDs are taught, “People without disabilities can do everything they want, and I can’t do anything without modifications/permission/goals.”

Wrong. It may feel that way, and again, you have the right to feel how you feel. However, there are plenty of things TAB people can’t do that you can. For example, I write for a living, both on the fictional and technical front. I am continually amazed at the number of adults, with no physical or cognitive issues, who have no clue what a comma is or where it goes. I consistently thank God that He saw fit to give me a taste of what it means to create something, through fiction, because not everybody gets that gift. Other people get other gifts, and sometimes I feel envious of those. But I do my best to love and enjoy my own.

 

To go along with number five, you should also be careful of certain myths. You know, like the one that goes, “You can do anything you want as long as you set your mind to it.” That’s a beautiful thought and in some cases, it’s true. But as one of my pastors once told me, it’s never true all the time. If you hold too tightly to this axiom, you’ll end up believing you’re a failure. Why? Because no matter how much effort they put into it, there are things everyone just can’t do. For example, only a certain percentage of us truly have what it takes to go into the military. Only a small number of us can professionally skydive. Anyone can sing, but some of us just sound awful. Disability or not, some of us can’t play sports worth a hoot. Again, this is not an attempt to make anybody feel bad; it’s an attempt to focus on reality. As in, stop sending the message that PWDs should basically go around with I CAN’T tattooed on their foreheads. Why? Because despite what they can’t do, nobody else has to put up with that crap.

Finally, a brief message to loved ones of PWDs: be careful that you don’t send the “I can’t” message or make PWDs in your life feel too disabled. Of course, sometimes this happens no matter how careful and loving you are. That’s life. But don’t do it on purpose. For example, don’t insist that a PWD be independent only on your terms (i.e., “Yes, you will go to therapy in a town 30 miles away because I tell you to, but no, you cannot be dropped off to go to the movies with your friends–I don’t care if you’re 16.”) Look for modifications–don’t insist they get into that tub or shower without support if it feels unsafe. And most important of all, nurture their strengths. Ask what their dreams are and encourage those dreams. Help the dreams grow and come to fruition.

Signing off now, leaving you with a recommendation to enjoy an Almond Joy and/or Mounds today. Why? No reason–just because we all need a lift now and then, and to indulge our inner chocolate nuts.

 

Hello readers, and happy Independence Day weekend. Last year at this time, I dedicated one of my posts to my love of reading and desire to highlight books with independent, intrepid, and multifaceted protagonists. In celebration of Independence Day and another July here on the blog, I want to do so again.

First, a few guidelines:

  1. The books on this list don’t necessarily feature characters with disabilities. Those that do, are books that place the character with a disability in a position to do things other than “inspire,” although inspiration can be a facet of the story.
  2. Many, though not all, of these books are aimed at adolescent readers or young adults, since this seems to be the prime age to move into reading literature with deeper themes and universal questions.
  3. I will try to strike a balance between male and female protagonists. However, growing up as a cisgender female, and in a time where a lot of teachers were focused on books for boys, I exposed myself more to books featuring girls. There may, therefore, be more female protagonists, although I do look for books with gender-neutral themes/questions/settings.
  4. As an addition, this year’s list will include some books that represent characters with disabilities and the disability experience, but not necessarily in the best light. The purpose of including these is to encourage readers, adolescent and adult alike, to make comparisons and contrasts, and talk about how disability *should* be represented, as well as what can be done to change current images.

 

Here’s this year’s list:

 

Mine for Keeps (Jean Little). Sarah Jane “Sally” Copeland is a fifth-grader with cerebral palsy living in Canada during the 1980s. In order to provide the best services possible, Sally’s parents sent her to a boarding school for kids with CP and other disabilities when she was small. Sally has always longed to live at home, and this year she’s moving back for good. But being with her family full-time and in a mainstream school presents a lot of challenges. Fortunately, Sally gets the chance to make friends and be both independent and interdependent. Through her West Highland white terrier Susie, she also gets the chance to take sole responsibility for someone, care for them, and face her own fears. Special mention to Sal’s dad, who is a rare example of a parent who makes sure his daughter has what she needs in terms of modifications but encourages her to live life to the fullest.

Wonder (R.J. Palacio). This book is a bestseller, and I can see why. It concerns Auggie, a fifth-grader born with facial deformities who has never been to a “real” school. When he gets the chance to go he’s unsure about it, but soon meets some unique friends who see beyond his face and limitations. Auggie has a strong and funny voice, and Palacio does something unique by giving us other characters’ perspectives. There are companion books to this one, each featuring one of Auggie’s friends.

The Shakespeare Stealer (Gary Blackwood). Orphans don’t get many chances to experience independence or self-determination, especially in Shakespeare’s day. Fourteen-year-old Widge is no exception. His cruel guardian has ordered that Widge use his gift for shorthand to steal Hamlet from none other than William Shakespeare. This prompts Widge to get involved in the theater, and determine whether he will risk his life or betray the first friends he’s ever had. Note that due to archaic language, this may be a tough read for younger kids; I’d suggest 14 and up.

Girls to the Rescue (Bruce Lansky). This is an older series of paperbacks that you may find used in good condition, although they are all available on Amazon.com, as are separate stories. Each book in the series is an anthology of short stories from many cultures, all featuring girls who do heroic things rather than waiting for a prince to rescue them. Some stories are fairytales, others are folktales, and still others are contemporary. One contemporary story, found in Book #5, concerns Aisha, an African-American girl who rescues the two-year-old she’s babysitting from a house fire. The twist to that rescue is what made me put her story, “Tulia,” on the list in particular.

Because of Mr. Terupt (Rob Bueya). Another current bestseller for young readers, this one features an elementary school cast of both boys and girls, and their innovative new teacher Mr. Terupt. The cast ranges from Peter, the class clown, to Anna, a girl with a rough home life, to Jessica, a young aspiring actress. When harmless fun leads to tragedy for their teacher, all the narrators worry it’s their fault. However, they also come to terms with their own struggles and find inner freedom. Special mention to Jeffrey, who like Anna in Jodi Picoult’s My Sister’s Keeper, has spent much of his life as a live donor for an ill sibling.

A Little Princess (Frances H. Burnett). This one gets some flak from the modern feminist movement, as well as parents who want their daughters out of the princess phase ASAP. But it was one of my favorites as a child, partially because of Sara’s irrepressible, independent, and kind spirit. When Sara’s father dies, she is made a drudge at her strict boarding school, under the thumb of a sadistic headmistress. Her ability to be noble and kind is tested, but she comes through with flying colors. I also highly recommend the BBC film version, made circa 1986 and starring Amelia Shankley as the title little princess.

Girl, Stolen (April Henry). Cheyenne has pneumonia, so her stepmom takes her to get antibiotics and leaves her bundled in the back of the car. Before her stepmother can return, Cheyenne is kidnapped, thanks to an antagonist named Griffin. The problem is, Griffin doesn’t know Cheyenne is blind and the daughter of a huge corporation’s president.

Wolf by the Ears (Ann Rinaldi). Sally Hemings is coming of age at Monticello, the home of Thomas Jefferson. She is a pampered slave girl, but could pass for white, and now that she’s growing up she has to decide if she wants to do that. Rinaldi is one of my favorite historical authors for YA readers, and in this book she takes an interesting and deft look at how what’s on the outside can influence independence, as well as whether being white could make a person truly “free” in any era.

Al Capone Does My Shirts (Ginnifer Choldenko). Twelve-year-old Moose Flanagan’s dad just got a job as a prison guard–at Alcatraz–in the 1930s. That’s one reason the family has moved; the other is so Natalie, Moose’s sister who has autism, can attend a prestigious school for kids with disabilities like hers. The perspective on prison gives this book a unique connection to physical and personal freedom. The fact that Natalie’s parents “grieve” her disability and search for a cure is not ideal, but it is sadly correct for the 1930s (warrants discussion). Moose has a strong, funny voice and is a good brother to Natalie; he has honest emotions regarding her but doesn’t seem to approach her disability the way his parents do.

Wonderstruck (Brian Selznick). This one’s a doorstop–640 pages–and no, I haven’t read it. But I am recommending it because it does something too few books do. It unites a male and female protagonist, Ben and Rose, in a non-romantic way. They run away together to New York, searching for what they want out of life (for one example, Ben wants to find his missing dad). And did I mention, both protagonists are deaf?

Megan’s Nutcracker Prince (Emily Costello, Ballet School Series #4). Megan Isozaki is half-Irish, half-Japanese, and all ballet lover. When she gets the role of Clara in the ballet school’s Nutcracker production, her friends are thrilled for her. Megan should be thrilled too, but she just found out she has a significant learning disability and thinks that will negatively influence her performance. She’s also keeping said learning disability a secret from her friends and dealing with a Russian houseguest, as well as the regular ups and downs of being a ten-year-old. Will she knock everyone’s socks off or miss some crucial steps?

Night (Elie Wiesel). This beautiful soul died Saturday. In view of that, and in view of the inner freedom he had to achieve and pointed others to, I highly recommend his Holocaust memoir. It’s just over 100 pages, but please don’t rush reading it.

A Pony for Keeps (Pony Pals Series #3, Jeanne Betancourt). Anna loves her pony Acorn, and hanging out with the other Pony Pals. But her parents say if her grades don’t go up this term, Acorn must be sold back to his original owner. Despite Anna’s hard work, her grades don’t improve. She wants her pony and her social life back, but that may take a Pony Pals sized plan. Best for girl 8-12.

My Name is America (various authors). This series is the companion to the historical Dear America series for girls; it’s for boys. I recommend the journal of William Thomas Emerson, an orphan and Revolutionary War spy, James Edmond Pease, a Union soldier, and Patrick Flaherty, a soldier in Vietnam. The series also features characters like Chinese miners from the 1850s, black baseball players carving a niche in the 1960s sports world, and newsies in early 1900s New York. Despite the male protagonists, girls may enjoy this series, too.

Rules (Cynthia Lord). This is one of those books that doesn’t handle disability well. Twelve-year-old Catherine narrates, giving us an inside look at what it is to be twelve and to grow up with a younger brother who has autism. David is a satellite character, treated as autistic and little else; for example, he is routinely disciplined for natural behavior such as echolalia. Jason, a boy with physical disabilities who Catherine meets later, is also treated as a lesser person. Warrants discussion of what is and is not “normal” and what “rules” may be meant to be broken.

The Poisonwood Bible (Barbara Kingsolver). This one’s another doorstop, but so rich I read it twice. It concerns the Price women: mother Orleanna and daughters Rachel, Leah, Adah, and Ruth May. Their husband and father, an autocratic fundamentalist pastor, has uprooted them all from 1960s Georgia to the jungles of the Congo in the name of missionary work. This book chronicles what each woman learns, how she comes to know herself, and whether she eventually becomes truly free. Bonus points for Adah, a character who is hemiplegic but an entirely new kind of character with a disability. She’s snarky, observant, and intelligent. In a fundamentalist family, she’s the cynical skeptic and fascinated with science. She also loves palindromes.

Waiting for the Rain (Sheila Gordon). Tengo and Frikkie are growing up in the apartheid-ridden world of South Africa, circa 1970s. Tengo is black and longs for education. Frikkie is white, longs for the farm, and assumes his childhood best friend wants nothing more than to grow up to be the farm oobass (foreman). But when Tengo learns the truth of apartheid and what he can be, everything changes for the boyhood friends.

Monster (Walter Dean Meyers). Steve Harmon is a black teenager accused of murder. He’s been placed in juvenile detention, and writes his experiences uniquely, like a screenplay. The book is a probing look at freedom, race, and how one influences the other.

Handle With Care (Jodi Picoult). This one doesn’t handle disability well (hereafter tagged, DNHDW). Here, the character with a disability is five-year-old Willow, born with osteogenesis imperfecta, or brittle bone disease. She’s alarmingly brilliant, but alarmingly limited because of her parents’ attitude toward disability. In fact, Willow’s parents neglect older sister Amelia and are planning to sue their OB-GYN (and the mom’s best friend) for wrongful birth. Adult audiences only; I’m just gonna leave this one here.

My Foolish Heart (Susan May Warren). This is a Christian romance, so be aware of the specific target audience. The protagonists are Isadora “Issy” Pressley and Caleb Knight. She suffers from PTSD after seeing the horrible car accident in which her mom was burned alive and her dad, the town’s beloved football coach, sustained permanent, life-altering disabilities. He’s an Iraq veteran with a prosthetic leg, determined to become the new coach on his own merit, not because of pity. Each character has a life and personality outside disability and is drawn exquisitely well. You might also try Happily Ever After from the same author. Its protagonists are TAB, but Gabe, the hero’s brother, has Down Syndrome. Gabe lives in a group home that is presented as a true home and family–rare in literature of any kind. We also get to see his interests, such as reading, fishing, and Superman (and of course, he’s in love with Lois Lane, because Superman has to be)!

House Rules (Jodi Picoult. DNHDW). The character with a disability here is eighteen-year-old Jacob Hunt, a young man with Asperger’s syndrome. In creating him, Jodi Picoult piles on every characteristic a person with AS might have, and again has the main character focused on at the expense of a TAB sibling. Heavy language and heavy courtroom drama; adults and mature teens only.

The Wizard of Oz (L. Frank Baum). You might consider this the ultimate independence classic, as Dorothy searches for freedom and fulfillment outside Kansas, finding heart, courage, and brains personified along the way. Yes, you can watch the movie, too. In fact, I recommend that you do, for comparison’s sake.🙂

Saddle Sore (Bonnie Bryant, Saddle Club Series #66). This book unites Saddle Club girls Carole, Stevie, and Lisa with Emily, a rider with cerebral palsy who is helping make Pine Hollow more accessible. The girls are out to help another rider, who lost part of her leg in an accident, literally get back on the horse, but they’re all having trouble balancing riding and the rest of life.

The Gift of the Pirate Queen (Patricia Reilly Giff). Gracie O’Malley’s sixth grade year sucks so far. She’s lost her mother and has the strictest teacher in school. Her younger sister Amy, who is diabetic, refuses to take care of her own health, forcing Gracie to do so. She’s stolen something from her teacher’s desk. And by the way, Cousin Fiona is coming from Ireland to stay for Christmas and maybe longer. Gracie is prepared for a tough holiday, but Fiona’s pirate queen legend may improve things.

Hope was Here (Joan Bauer). Hope lives with Aunt Addie, who loves her, but is used to functioning as an independent adult even at sixteen. She’s a crackerjack waitress and loves her job, but not moving so much. When she has to move yet again, to Mulhoney, WI, she meets a group of friends who are unconventional and may teach her more about life than she anticipated.

 

I could go on forever but will force myself to stop here. I may come back later with more books; there will certainly be a year three. Happy 4th, everyone! To independence, interdependence, and a good life.

 

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