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Archive for July, 2015

Let’s Go to the Movies: Movies That Foster Independence, for Independent People

Hi readers,

I was going to start a new batch of serious posts today, but then I realized a lot of my ideas can be tied into back-to-school season, which generally runs from August to September. Since it’s still officially July, and since most kids don’t start school until late in August, I wanted something to fill this last week’s slot. And, after the serious post of last week, I needed something fun.

My first idea was to do another book post, but then I thought, what if I need that idea again and realize I’ve run out of books? So I turned to another medium I’ve always enjoyed: film. I once had a film professor disparagingly tell me that “Movies are not just stories set to music,” but films do tell stories. It’s one of the most important things they can do, if not the reason they exist. As beautiful as books are, sometimes you want the visual aspect of a story as well.

So today, I’m going to list some of my favorite films that I believe help foster independence for children and young adults. Therefore:
1. The focus will be on that audience. Most ratings will probably be in the G- to PG-13 range. That’s also a reflection of personal media choices because I never liked the hard-core R-rated stuff.
2. Protagonists do not necessarily have disabilities. Those who do may be a reflection of a certain time period and thus, not the best role models for PWDs. The goal here is to get young people with disabilities to look at a film and say, “The things I can learn/emulate here go beyond disability/my life is not all about disability.”
3. Protagonists must show some form of independence within their films, whether that’s physical or emotional, or develop in such a way that they could achieve full independence down the road.

Here we go–your fun not-quite-bonus post:

Ever After. (PG-13). This is the first film I thought of when I decided to do this list. Being a chick, I love a good old-fashioned chick flick, and I’ve adored the Cinderella story since I knew what it was. Protagonist Danielle de Barbarac is my favorite Cinderella ever written. Her time period, the sixteenth century, makes her much truer to what I think the original Cinderella would’ve been. The fact that she’s also smart and physically and emotionally tough makes her a great role model for girls and guys. She doesn’t think men should rule the world, but she doesn’t think they’re all pigs, either. She rescues herself in subtle ways even before she physically escapes those who would use and abuse her. What saves her? Reading–knowing there is a world beyond what she knows. Staying close to the people who still love her, like the servants in her home. And most importantly, refusing to allow her spirit to be broken.

12 Years a Slave. Yes, this one is rated R and with good reason. Older teens and adults only; slavery is not pretty and should in my opinion never be glossed over unless you are legitimately trying to introduce it to kids. However, Solomon Northrup is a character who goes for the guts of independence. He is physically in bondage and so needs to find physical freedom. Since he can’t do that right away–we’re talking about a three-hour film that spans decades–the filmmakers focus on his emotional state and what he has to fight to remember–namely, that he is a man of worth, that he has a name and a home and a family, and that he has dignity. I also like that the filmmakers don’t romanticize everything once Solomon does get what he wants. He still has to deal with his slavery’s fallout. I think that’s true of a lot of PWDs too; even if we transcend people’s low expectations, we may be left with scars, and that’s okay.

Dead Poets’ Society. (PG-13) This one is unique in that protagonist John Keating is not the one finding freedom. He has already achieved it. He knows who he is and he’s okay with that. He appreciates the world around him and believes there are always new ways to do things. The independent spirit here comes from the boys Keating shares his life with. They aren’t expected to think for themselves, so encountering a teacher who literally encourages them to rip textbooks apart is, to put it mildly, a shock. If you’ve ever seen this one, you also know some of the characters’ bids for personal freedom don’t end well. But again, that’s realism, and it’s so wrenching in places that I have to give the filmmakers credit for doing it well. If you can make the viewer cry without manipulating her or him, and make the viewer cheer, even for characters that don’t get the happy ending, you have succeeded.

Gold Diggers: The Secret of Bear Mountain (PG). This one is a Christina Ricci/Anna Chulmsky classic that many people don’t recognize–it kind of has a cult following. On the surface, it’s your classic city-girl-meets-country-girl-and-they-find-gold adventure story. Actually though, it’s more than that. The “country girl,” whose name is Jody Salerno, is also the town troublemaker, or so everybody says. She has a very rough home life and an abusive stepfather (well, sort of–he’s really just her mom’s boyfriend) who the whole town thinks is a good guy. Jody sincerely believes in the legend of a woman named Molly Morgan who disguised herself as a man to get a job as a miner and found heaps of gold inside a local mountain. Jody’s goal is to find the gold as a means to freedom. Her friend Beth isn’t so sure about all this, but goes along. The two girls end up finding a friendship that frees them both physically and emotionally from the labels and expectations they have placed on them and place on themselves.

Where the Red Fern Grows (PG). I know, I said I didn’t care for the book and I really don’t. I read it at a time when I was forced to read certain things for school, and everything my teacher chose seemed to be about boys. That being said, the book and movie have some good independence lessons in them. Protagonist Billy has to work for what he wants–namely, the two dogs Old Dan and Little Ann. Once he has them, he becomes responsible not only for their care and training but for the bond he holds with them during the coon-hunting contests he enters. In that sense, it’s much more than your classic “boy and his dogs” flick. The dogs are not necessarily the heroes here, and Billy isn’t a hero just because he comes of age. He’s a hero and worthy of emulation because he takes responsibility, works hard, and faces up to obstacles.

Anna and the King (PG-13). I actually like this version better than the musical it’s based off, although the musical itself is good. This version is far less glossy and family-friendly, and I appreciate that. At first glance, freedom does not exist in this film. It’s about colonialism and the often disturbing rule of a Siamese monarch who thinks X is X on Monday but can be Y on Tuesday if he chooses. But there is an independent spirit here. It exists in Anna, not only because she’s a classic “strong heroine” but because she has to come to grips with the fact that her British upbringing and beliefs don’t work for everybody in every situation. She’s eventually able to do that, and to appreciate Siamese culture without becoming immersed. For King Mongkut’s part, he learns similar lessons, albeit reluctantly at times. This allows him to find some relief from being the heavy head that wears the crown.

October Sky. PG-13. This is a movie I reluctantly watched as a kid with my dad, figuring I’d be bored out of my mind because it was about boys, coal miners, and homemade rockets. For a literary, romantically-minded gal, I thought, yawn-fest. Boy, was I wrong. You root for Homer Hickam and his friends from the first few minutes, and they are well-developed characters worth rooting for. I also love the teacher, Ms. Riley, who functions as a mentor but doesn’t interfere. Even Homer’s dad, who seems like a jerk at face value, isn’t really a bad person. He’s just a walking example of what happens when you become trapped in what other people expect for you, or when the one option you always counted on crumbles in front of you. Physical independence is mentioned here because Homer and his friends want to escape their dying coal-mining town. But the film is much more about emotional freedom, as well as how young teens and adults should reconcile finding their own happiness with love and respect for family.

Still Alice (PG-13). I haven’t seen this one yet but am going to go ahead and recommend it because it seems to deal so well with early-onset Alzheimer’s and gives us a protagonist who does her best to cope, not just curl up and die or become an “inspiration.” There’s a book, too; read the book first if you can wait because the book is usually better. 🙂

Temple Grandin (PG). Temple Grandin has gotten some flak from me because although she is a wonderful woman and a paragon of the autism community, she’s also one of the only famous PWDs most temporarily able-bodied folks can name. Despite this, the docudrama about her that stars Claire Danes is engaging and refreshingly real. The filmmakers didn’t scrimp on the truth. Temple’s mom was maligned as a “refrigerator mother,” institutionalization was recommended, and quite frankly, growing up, Temple went through hell because of her autism. The fact that she not only transcended all that, but stayed true to herself and her interests, is wonderful. So too is the fact that Temple isn’t portrayed as some saint. She gets upset and sad. She does “socially inappropriate” things, and she challenges people who chastise her for it. If you make her mad, she will make you sorry. And I love those things about her.

Schindler’s List, The Book Thief…etc. If it’s about the Holocaust, again, you’ll find the triumph of freedom and the human spirit there. Be careful which ones you choose for preteens and young teens for obvious reasons. For older teens and adults, I also recommend the Winds of War/War and Remembrance miniseries based on the book by Herman Wouk. It’s a marathon–my family and I watched one video a night over six weekends or so. It is worth it, though. Caution: Some very graphic scenes involving concentration camps and gas chambers, but well worth the forced looks if you’re up to them.

Harry Potter and the Sorcerer’s Stone. (PG). You could argue that the whole franchise has an independence theme because the characters are trying to free themselves and their school from Voldemort and his evil forces. However, I’d pick the inaugural film as the best example because it’s the one where Harry finds out his wizard heritage and has to reconcile that with his miserable Muggle childhood. He has to decide what he’s going to believe about himself and how he will act, which in turn influences his decisions for that movie and the rest of the series. Those initial decisions are ones we must all make in the quest for freedom, arguably PWDs in particular.

The Chronicles of Narnia: The Lion, the Witch, and the Wardrobe. (PG). What, you really thought you could read a Christian’s blog and not see this one? 😉 Again, the whole trilogy fits, but the first film is my favorite for the independence element. There is a physical element to freedom here; Narnia is, after all, in bondage to the White Witch. Edmund ends up in physical bondage as well. However, what I really love about this movie is how the Pevensie kids have to learn to embrace their true identities: as heroes, and as kings and queens who can use their freedoms and spirits for the good of Narnia and themselves in the real world.

Despicable Me. (PG). It might seem like an odd choice, but this is one of my favorite independence-driven films for kids. Why? Because villainous Gru actually develops during its run. He initially adopts Margo, Edith, and Agnes for his own gain, but they do grow on him. This forces him to make a choice between being the world’s greatest villain temporarily, or the world’s greatest dad forever. It’s a real-life parenting struggle and a commentary on the choices we make. Will we make the ones that seem right but leave us in bondage and longing? Or will we make the ones that lead to a new kind of greatness we didn’t anticipate?

Fiddler on the Roof. (G). Since this is a musical with a long running time, and does gently but firmly deal with some harsh realities, I’d recommend this for kids nine and older. The major focus here is how Tevye’s daughters break from tradition to make their own choices in husbands. Yet there are other, subtler examples of the struggle for freedom in the film. For example, Tevye has to deal with the fact that tradition, taken too far, may cause him to forfeit freedom and family. He also has to make some hard choices when it becomes impossible to remain a devout Jew in Anatevka. Even characters who seem like archetypes of the rules and the Old Ways, like Yenta, embody freedom in some way. Yenta’s matchmaker shtick, for instance, shows she’s actually a cool lady who understands more than she lets you think.

The Secret Garden. (G or PG depending on version; I recommend either the 1993 version or 1975 BBC miniseries). As I’ve said before, Colin is a bad example of a character with a disability because he’s spoiled, pitied, and only becomes pleasant as he learns to walk again/”gets well.” But he does find emotional independence in learning that the world doesn’t revolve around him. Mary also finds emotional independence from the antisocial tendencies and spoiled upbringing that basically stunt and cripple her until she finds the garden, and real friends in people like Dickon, Martha, and Ben Weatherstaff.

THE DINSEY/PIXAR SECTION:

Because I’ve talked about a few of these before, I’m going to go ahead and list them but only briefly discuss their benefits.

The Hunchback of Notre Dame. Quasimodo is a character with a disability who’s also a great example of someone who does not exist to be inspiring. In actuality, he just wants to be a normal guy. He’s physically strong, yet emotionally open. He’s raised to think the world is cruel but lives life in a way that says the opposite. He does get independence from Frollo, but also helps others achieve freedom. The fact that he doesn’t get a classical happy ending is also a strong point. Not for young kids due to Frollo’s darkness/sexual obsession. 12 and over despite G rating.

Frozen. Families can focus on Elsa’s ice powers, how they keep her in bondage, and how she and Anna both free themselves from the literal and figurative ice in the story.

Wreck-it Ralph. Ralph and Vanellope aren’t classically “disabled,” but they are treated as outcasts, and Vanellope’s “glitch” is treated much like a real-life disability. Families can discuss how both characters deal with and transcend the expectations placed on them, as well as how the villain’s thirst for attention took his freedom away.

Finding Nemo. Parents, if you’ve got a kid with a disability, sit down and watch this with them. Kids can learn from Nemo’s adventurous spirit despite his bad fin, as well as find comfort in the fact that Nemo loses confidence sometimes and needs help from mentors like Gil. Parents can learn from Marlin’s overprotectiveness but also find encouragement in his tireless devotion to his son.

Beauty and the Beast. The freedom motif here covers the Beast’s enchanted imprisonment, the figurative imprisonment he feels at being seen as a monster, and how Belle helps free him from it. There’s also discussion fodder about why Belle might feel trapped in her small town, the expectations placed on her, and why her father is so mistreated. Remember, part of independence is the freedom to be different, while still being kind and generous to others.

Toy Story 3. Again, the whole franchise is good, but this is the one I think embodies independence. It’s not just about the physical escape from Sunnyside Day Care; it’s about how Woody and the gang have to free themselves to accept a new owner, and how Lotso and other villains suffer because they wouldn’t release their hearts from emotional prisons after getting hurt.

So, if you’re looking for a good late summer flick to share with the kids or teens, pop some popcorn and celebrate freedom through film.

*Note: Where are The Giver, Divergent, and similar films: I chose not to include these because the parallels are obvious and because they have been very hyped up. I’d rather focus on lesser-known choices or ones that are popular but don’t carry obvious overtones.

You Can’t Fire Me, I Can’t Fire You, I Quit! What to Do When Disability Makes You Want to Quit

Hello readers,

I’m in a memoir mood today–a bit of a snarky memoir mood at that. In the back of my brain, I’m kind of hoping that writing this post will get me on the road to writing my own full memoir. It’s something I’ve wanted to do for awhile and something I think would be an act of obedience to God. So far though, I’ve just been too chicken (for a lot of reasons, but I may enumerate those later).

Let’s take off the gloves and the shoes and the makeup and be real here. Sometimes disability makes you want to quit. As in, throw up your hands, stay in your pajamas, climb in bed, and watch reruns the rest of your pathetic five-months-from-thirty-and-still-single-with-a-cat life. That kind of quit. Unfortunately, for most of us, disability is or will become a lifetime deal. We can’t fire it. It can’t fire us because it’s inanimate. And even though we’d like to, even though we scream, “I’m as mad as hell and I’m not going to take it anymore!”, we can’t really quit. The only way to quit disability is straight-up suicide. I’m not going to pretend I haven’t been there, because I have. But I don’t advocate suicide, and I’m too chicken to do it. Frankly, I’m a chicken, period. I could’ve gone full-blown anorexic in college, but was too scared of being hauled off to the hospital and put on a feeding tube. I could’ve turned to self-injury and other mentally unhealthy coping mechanisms but was terrified of institutionalization. It took me months to put “Cell Block Tango” on my iPod because deep in my evangelically-influenced psyche, I was still kind of scared it might send me on the short road to hell, or at least purgatory. (Don’t ask). Most of the time, I’m even too chicken to say, “I quit” to my disability, because it feels like I’m quitting on God.

And that’s where this gets complicated. Because I’m not just a Christian, or a God-follower, or a woman with a disability, or five months from thirty and single with a cat. I am all these things and I can’t quit any of them. But sometimes I want to. I need to. I can’t keep going. I can’t keep attempting to juggle all these roles and rules and memories, and come out smelling like English ivy. And I wonder, how many other PWDs feel this way? How many of us are just over it and want to quit? Not in a suicidal way, but in a way that says, “I’m done with all my roles and rules. I can’t do this anymore and it’s unfair of God, or the universe, or whoever, to ask. Nobody else has to deal with living a hectic human life while being unable to do basic tasks, so why should I?”

And what do you do when it happens to you?

Let’s break this down into some practical do’s and don’ts, shall we? First off, some things I think you shouldn’t do, gleaned from my experience and observations.

When you want to quit, you DON’T:

-Surround yourself with clichés. These include but are not limited to the ever-popular:
-Don’t give up. That’s like saying, “Don’t cry” to a sobbing person. The intentions are good; I’ve even said it, a lot. But what that really says is, the speaker is uncomfortable with tears and isn’t ready to step back and let the emotions just “be.”
-It could be worse. Yes, I’m sure it could. You could be dead. You could have terminal cancer. You could have just miscarried a baby or finished a grueling divorce. And maybe you did, so things are worse and you don’t need to hear it. But even if you didn’t–a disability, no matter how mild or invisible, gets us all down sometimes. It should never be relegated to a “first-world problem.”
-Don’t whine, but shine. And its variants, like, “Focus on Christ and not your circumstances/praise despite circumstances/be grateful.” Christians, especially evangelicals, are famous for these. And I’m not saying they’re bad or wrong. Bringing God a sacrifice of praise is in fact biblically based (you’ll find a reference in Hebrews). But so, so often, these are used to discount real feelings and gloss over experiences. I cannot stand it. It drives me berserk. In fact, reading advice like this from an author I really respect–and who also happens to be blind–is part of what drove me to compose this post. Guys, especially Christians: you’ve got the right idea here. But please, oh please, be careful how you use it, especially with PWDs. (It occurs to me that, in all the encouraging books marketed to Christians, very few talk specifically about the disability experience. Instead, they talk about having a joyful life within disability’s context–needed and useful, but not always the best way to handle the experience).

You also don’t:

-Turn to self-injury, addictions, or suicidal thoughts and actions. These may happen, and if they do, that’s fine. You’re not a bad person; you’re not going to hell. But these choices may kill you before you had a chance to fully live a good life (and that’s what everyone needs, disability or not). So if you do find yourself in that kind of situation, seek help immediately.
-Hyper-focus. I know, that sounds weird considering what I just said about Christian clichés. But if you hyper-focus and get into a “woe is me, I have a disability” mode, you will not like who you become. Instead, try some of the stuff on the “Do” list below.
-Lie. This can mean stuffing down your emotions or pretending like everything’s fine. (Note that if somebody you don’t know well or don’t trust wants you to dish, you don’t have to. You probably shouldn’t). But, don’t lie to those closest to you, even if they’ve heard it a million times. (The fact that they’ve already heard it would, ideally, get those people to help you).

When disability makes you want to quit, you DO:

-Find at least one thing per day, or even per hour, to be thankful for. And no, “My disability isn’t worse” does not count! It has to be something that truly brings you joy. It could be as big as, “Somebody wants to publish my book” or as small as, “I got to have ice cream today.” Name it, enjoy it, praise God for it. You really will feel better. If you just can’t think of something, ask someone to help you find one.
-Do something physically, mentally, or emotionally healthy. For example, it’s recommended that people struggling with depression or an “I quit” phase get out there and exercise. Exercise is good, and I recommend it, too. But exercise can be hard and boring if you have a disability, so don’t go straight there. Similarly, don’t go straight to reading if you have dyslexia, even if you use audiobooks. Do things you enjoy, or that are purely silly or indulgent. For example: binge-watch a favorite show for a couple hours. Eat chocolate. Heck, turn on Sesame Street if you want. Nostalgia fixes a lot of things.
-Take the day off. Obviously, you can’t exactly take a day off from being a PWD. For example, I can’t turn cerebral palsy on and off. But I can choose to devote one day to not worrying about CP (which I should do more often, actually). You can reschedule a therapy appointment, or ask the people around you to discuss things other than “treatment.” This may help alleviate mental pressure.
-Have a good cry or even tantrum if you need one. If people call it a “meltdown” or “behavior”–well, ideally, you could tell them to screw it. But since some people are less understanding than others, this is best done in the safety of your own home or with trusted friends and family. It can be draining–there’s a reason they call it an “ugly cry.” But it will be cathartic.

Above all, when you tell your disability you quit, don’t quit on yourself. Best of luck and blessings to all. 🙂

Lovely (or Lonely) At the Top: Being an Oldest Child With a Disability

Hello, readers, and welcome to the installment of the birth order series dedicated to oldest children. This post is somewhat personal to me since I am an oldest child.

Being an oldest child obviously has its perks. You usually get to do everything first. Adults tend to rely on you more and give you more responsibilities, though that can have its downside. You’re the first child who gets to carve a niche in the outside world and excel in your chosen field. Oldest children are often described as organized, leaders, and possibly bossy; while these are sometimes stereotypes, they can be traits used to your advantage. Dr. Kevin Leman knows this; two of his books carry the titles First Born Advantage and Born to Win. (That’s not to say younger and middle kids can’t be winners; it just means a firstborn is likely to be more competitive).

But what if you’re an oldest child who also has a disability? Ah, now we’re getting complicated. In my experience, a disability can take an oldest child any number of directions and have a mixed impact on him or her. For example, Dr. Leman and other psychologists talk about how, if an oldest child has a disability, he or she may be “passed” by a younger sibling. This means although the sibling, or siblings, are younger chronologically, they will become more adept physically or mentally, and thus take on the roles and responsibilities that would have been occupied by the oldest child. The oldest child is in particular danger of this if the disability is severely physical (i.e. quadriplegia) or moderately to severely cognitive (Down’s, Fragile X, brain injuries influencing cognitive capacity, physical disabilities like CP with a cognitive component).

However, even those of us with mild disabilities have to worry about being “passed” if we’re the oldest, on some level. I am four years older than my brother and cognitively above his level. But he is much more physically adept than I am. He can drive, I cannot. He plays sports and I have poor hand-eye coordination, as well as visual issues that make it difficult and unpleasant to participate in athletics. He could tie his shoes and button buttons way before I could. And yes, in our lives that did cause some rivalry. He complained because he felt that our parents gave me more than my share of attention. I fired right back at him that I didn’t want all that attention, and he was ungrateful for the skills he had. You know, that kind of thing.

So, in answer to this first issue oldest children face, I’ll say this: Parents, be careful when you see it happening. It’s not something you can prevent entirely. For example, if oldest child Matt has a cognitive disability and younger brother John is cognitively fine, there is going to be some discrepancy there. However, you can set certain parameters that help Matt feel like the older brother he is. Let him do safe things that John doesn’t get to do; if Matt reaches bike-riding age first, he should get to do that, with guidance and modification when necessary. If the oldest always gets the front seat in the car or to choose the DVD on movie night, Matt should have those privileges.

You can also help by encouraging your oldest child to help younger siblings in areas where the younger ones need it. For example, an athlete I am not, but I excelled at school. My brother struggled, especially with humanities subjects, so guess who helped him pass ninth grade English and quizzed him in Spanish and science? Right, me. In addition, don’t let the older sibling’s insecurities get in the way. For example, if Monica truly doesn’t want to play sports because she has leg braces, don’t force little sister Shannon to teach her to cheerlead. And don’t make Shannon help Monica with dressing and grooming, unless she asks for it; that’s humiliating. But, do encourage Monica to ask Shannon for help if the parents aren’t around, and do tell her that she doesn’t have to be perfect at an activity to enjoy it.

Now we come to the second issue oldest kids with disabilities may face: perfectionism. It kind of comes with the territory of being an oldest kid whether or not you have a disability. You have to understand, we oldest kids had Mom and Dad to ourselves for awhile–at least a year and often more. We grew up around adults, so we learned to behave somewhat like adults even if we played with other kids. We’re generally responsible and organized people and we want to win, so we try to be perfect. If you have a disability, the pressure to be perfect increases tenfold. You may, like me, feel you have to excel in everything else so that your disability will be “forgiven,” or that you have no excuse to “act disabled” (i.e., request help). Learn a lesson I’m still learning: you do not have to be perfect. If your parents are pressuring you to do so–if, heaven forbid, they are actually presenting an attitude of, “Don’t be more messed up than you already are”–you will have to seek outside help from siblings, friends, clergy, etc., to help resolve this issue.

Sometimes though, an oldest child will feel like he or she is already perfect. Dr. Leman calls this being a “prince or princess in waiting.” It’s kind of the reverse version of the entitlement youngest kids feel. That is, because they were first, and because they had Mom and Dad to themselves for awhile, oldest kids might be a little, or a lot, spoiled. In the case of disabilities, this may have been coupled with treating them like a fragile hothouse flower. Some kids are comfortable with this, and they learn to manipulate others just like they do their parents. Others rebel against this, seeking independence, which can cause clashes with parents and family members, and might be unsafe. If this describes you at all, keep these things in mind:

  • You are no more entitled than anyone else. Do not manipulate situations just because of your disability. It may work for awhile, but if you’re anything like me you’ll soon tire of people coddling you.
  • You really can catch more flies with honey. In my own struggle for independence, I have sometimes been a Dragon Lady, and have gotten into some unsafe situations (emotionally if not physically). You’ll need to learn the art of expressing your feelings, needs, and wants well, but calmly. Enlist siblings, friends, teachers, etc. to help with that. As I’ve said in other posts: enjoy being a kid. Just because you can’t do something now doesn’t mean you never will. However, if you are an adult and still being held back, it’s time to get blunt. Remind those around you that you are capable, citing examples of areas where you do excel. Remember that life is not a waiting game. “Ready” is something you determine, not something a therapist or doctor determines for you.

    Finally, oldest kids are often seen as the responsible ones, or as junior adults. This can come in handy; it allows you to build trust with adults early, and to become a more independent person. However, as you might guess, some families go to extremes with this when their oldest child has a disability. They either refuse to give the child age- and cognitively-appropriate responsibilities, or they say, “Having a disability is no excuse” and overload them. Both these scenarios are harmful. In the former, the parents deny their child a chance at independence and a real life. If they can’t do household chores at age 8, why should they clean up after themselves at 18? If they don’t receive an allowance at 10, can you really expect them to be good money managers at 21? (And yes, I know, some disabilities make it harder for adults to manage money, keep things tidy, and so on. But in my mind, that just means they should be taught sooner and better).

    In the latter scenario, the child will grow up believing disability is inherently bad, and perhaps that people with disabilities are lazy and want to make excuses. Parents, don’t consciously perpetuate this. This is what the world already thinks, and has proven it thinks for centuries. Your child will hear enough of this in school and at work; they may be accused of using modifications to manipulate or cheat, or of being lazy when something really is too hard for them. Instead of feeding this sickening myth, give your child realistic responsibilities and incentive for carrying them out (i.e. allowance). Emphasize too, that responsibility does not preclude disability, or vice versa. They are still entitled to come to you or other adults with problems, even as they complete responsibilities to the best of their ability.

    The top of the family pecking order can be a tough place to grow up. On the one hand, you’re on top of the food chain, but on the other, you have all these other little family cubs clawing at you, and Mama and Papa Bear expecting you to act bigger than you are. If you have a disability, you may have to wrestle with a whole new “bear” of a problem. But hopefully, once you and your family knows what it’s dealing with, you too can begin enjoying your position more.

    Take Good Care of My Baby: Being a Youngest Child With a Disability

    Hi readers,

    You have been very patient, so here’s the next post in our birth order series. This one focuses on the youngest kids, simply because the oldest always gets to go first. (Oldest kids, hang in there, you’re next).

    I believe youngest and oldest children may have more stereotypes attached to them than middles or onlies because their positions are more easily defined. For example, the youngest child is generally characterized as:

    -A performer
    -A charmer who gets away with things he or she shouldn’t
    -A lover of people, though this may not = extraversion per se
    -Coddled, even in adulthood
    -Having a sense that they are special (and as Dr. Leman says, they will remind you every few minutes lest you forget)
    -Sometimes rebellious; likely to go in totally different directions from the siblings above them

    Now in some cases, these are true. For example, I’m the older sister to a younger brother, and he is a charmer and a born salesman. I swear, the man could sell milk to dairy farmers. He also has a tendency to do things, and get away with things, I would never do because he’s more comfortable bending or breaking rules. For instance: he’s a cable guy (every couch potato’s hero) and a huge Oakland Raiders fan. Thus, in his world every other team might as well not exist. He once went to the home of a client who was a Buffalo Bills fan and had appropriate memorabilia all over the house. My brother insulted her team to her face–and she laughed. Had I done that, I probably would’ve gotten kicked out. But I’m used to hearing stories like that because it’s how the kid has been from day one. if I got a B, it felt like a letdown. Meanwhile, he’s all, “Whoo-hoo, a D! I passed!” I’m a one-man-at-a-time gal. He went through several short-term girlfriends before finding my wonderful sister-in-law (who knows I will smack him if he misbehaves). 🙂 He got away with stuff while I got the classic line: “You’re older and should know better.” But, he can always make me laugh. He’s brave enough to bend the rules I won’t touch. And he is special.

    But what if you’re the youngest and “special” also means you have a disability? Well, as we have discussed, I don’t like “special” as a descriptor for any PWD, but since every child is special (and since the youngest has a tendency to remind us), I’ll let it slide here. The point is, for a youngest child, position in itself can come with benefits and fallout. Whether a disability is part of the benefits or the negatives depends on how it’s handled. Let’s examine that now.

    As mentioned, the youngest child’s position is easier to define than a middle, but there are scenarios that can affect your position and disability. So:

    The Classic Baby: Exactly what it sounds like. No matter how many kids are in your family, you were born last in line. You’re probably fussed over and coddled, at least when you’re little and often into teen years and adulthood. If you have a disability, it’s likely that one of two things will happen: the coddling turns into overprotection and/or making excuses for bad behavior, or the coddling is actually less pronounced than usual. Here’s my advice for either scenario:
    -Too much babying/coddling: Be careful that you don’t fall into a trap of entitlement, especially if your parents have a naturally permissive style. Parents, you’ll have to delineate early between what is unacceptable behavior and what behavior has disability-related roots. If you are an adult and already find yourself acting entitled, even without meaning to, it’s not too late to change. Your siblings may feel resentful, or they may pity you and not see you as a “whole” person. Do what you can to make amends and ask others to come alongside you.
    -Too little babying or attention: This can be a positive thing if your parents used it as an opportunity to help you reach your potential. For example, let’s say Kurt is the youngest child of five and is also blind. His parents give him the help and support he needs, but realistically, they also know they’ve got four older kids, so their attitude becomes, “Kurt, as much as possible, you need to do things for yourself and be your own advocate.” That’s great, and it means Kurt will become a better-adjusted person more able to survive in a world of people without disabilities.

    However, if Kurt’s parents–or any youngest child’s parents–use the presence of siblings to say stuff like, “Stop whining,” “You can do this/you better learn,” “I won’t put up with your excuses,” then, TWEET! That’s my whistle–I call foul. Every child needs attention, and like it or not, the youngest may need more because it takes them longest to grow up in most cases. If you are a youngest child who feels pushed to the side, get help from siblings, teachers, even counselors. If you are an adult who was treated like this and still feels the sting, confide in a family member or friend you trust. They can help you start healing the hurt and hopefully get your parents to understand that pushing your child doesn’t mean running them over.

    The Baby Who Wasn’t: This is what happens when the youngest child was born 5+ years after the sibling directly above him or her. Dr. Kevin Leman actually has a case in his own family. His first three kids were born within a few years of each other, but his two daughters Hannah and especially Lauren were late pregnancies. Thus, as he says, Lauren was born saying, “Okay world, here I am, let’s get going.” She took on a lot of what we’d consider firstborn or only child characteristics–as can youngest kids if born into this situation. Advice for a couple different sub-scenarios:

    -If you have siblings that act like second parents: They may smother you, trying to help you all the time when you don’t need it or making a big deal out of therapy/treatment. For example, let’s say Anna has dyscalculia, and every time her siblings want to play Monopoly, it’s, “Come on Anna, play with us so you can work on your math.” They probably do that because Mom or Dad have implicitly or explicitly sent the message that they should–but to Anna, man, is it annoying! Having siblings that are so much older, plus a disability, can also make Anna and kids like her feel as though they don’t really have a place in the family. They’re just that slow, messed-up kid everybody has to take care of. If this resonates with you, you may need a break from the family pack. Find social activities you like, and make friends in them who will see you for who you are. Work hard at developing interests and hobbies, making a name for yourself outside of “family mascot.” Remind your sibs that you have parents–you need brothers and sisters.

    -If you’re a youngest child who tends to act older: Be careful not to boss people around or alienate them. Don’t use your disability and position as an excuse to get your own way. Don’t put pressure on yourself–if you’re a kid, act like a kid. You only have so long to do so (although we could all stand to be kids more often). Develop good rapport with siblings and friends so that when you need to, you can say, “I’m scared/mad/stressed/sad.” Particularly if you have a mild disability, speak up for yourself and your needs. Otherwise, your needs may get overlooked by accident.

    -If your siblings are out of the house: You’ll have to work harder at building relationships, especially since your older siblings may learn to see your disability first. This is especially true if any of them are naturally nurturing or are studying fields that require nurturing (teaching, medicine, social work). Focus on what you can do, teaching siblings and friends to do the same. Spend time making and keeping friends so you have a good social network outside the family. Be careful not to draw into a shell. If you find yourself missing your siblings, ask parents, family members, or friends to schedule visits. Come up with special activities that are just for you and your sibling (or more than one activity, if you have more than one). Ask siblings for advice or help when they are around.

    Sharing that Last Spot: The youngest child’s position is hard to “share,” but it can happen if two siblings are born a year or less apart. Marta and Gretl from The Sound of Music are a good example–Gretl was five and Marta was seven (at least, she told Maria she would be seven on Tuesday. 🙂 As with middles, sharing can mean you each get a break from parental over-attention and under-attention, but it can be tricky if one of you has a disability and the other doesn’t. For that, see my notes on middles with the same situation. Also, be aware that there may be squabbles over parental attention or who was helped or loved more, even into adulthood. You may need outside help with repairing those issues if they’re deep enough.

    Basic Tips for Youngest Kids with Disabilities:
    -Avoid a sense of entitlement, esp. as you get older
    -Build a social network and try lots of different activities when possible, especially those that reflect your interests and passions. This can help make your disability less of a focal point and help you learn to work with teams and groups. This can be vital when you have to speak up and ask for help or educate others about what you can do vs. what you can’t.
    -Take a break from the family pack when necessary, even if that just means going to your room or a designated safe spot for awhile
    -Remember that you CAN be independent. Youngest kids, disability or not, may have a rough time with this, and disabilities can make it worse. If you want to live on your own, take trips, or do other things your family doesn’t think you are ready for, remind them that life isn’t about “ready.” When you say you’re ready, you often are. Seek outside support when necessary and make your mark on the world. You are fully capable of growing up to be, and living as, a happy and functioning adult.
    -Use the inborn traits that make you, yes, special. If you’re a performer or artistic, capitalize on it. If you’re extroverted, love and laugh with the people around you. Choose jobs and fields that use your skills. And, if you are an introvert, not a performer, or otherwise an atypical last child? Rejoice–you broke the mold. We need mold-breakers and earth-shakers. You can be one, and you can capitalize on your talents as well. In fact, being the youngest may improve your appeal: everybody likes a comeback kid, which is what the youngest sometimes is, disability or not. It may be that your star gets an extra bit of polish now and then.

    Hail to the Books: Books About Independent People, for Independent People

    Hello readers,

    I was called out of town yesterday and returned at two A.M. Not being a night owl, that meant no Independence Day post. But here I am, ready to give you the special bonus I promised. But first: a big thank-you, again, to all the veterans who have served or are currently serving. A happy and blessed Independence Day to all of you and to everyone else.

    Independence Day is sort of a mixed bag for people with disabilities, isn’t it? On the one hand, I believe everyone wants independence. That’s how we got the United States of America, for crying out loud. Yet as we know, independence is hard to come by when you have a disability because everyone seems to want you to be independent on their terms. You can be the most freethinking, funny, smart, and interesting person in the world (besides the Dos Equis guy, of course), but if you can’t tie your shoes, ride a bus, or walk or talk in a prescribed fashion, suddenly you’re not worthy of personal freedom. Really, sometimes I wish one of our founding fathers had been in a wheelchair or had cerebral palsy or something, because he (or even she; we don’t talk enough about the founding *women*) would never have put up with that.

    Sometimes though, the fight for independence–on your terms or anyone else’s–can get long. Sometimes you need an escape. My favorite escape always was and will be reading books concerning independent protagonists. So in this post, I’m going to recommend several young adult and children’s books, as well as a few adult ones, that feature such protagonists. My goal is to reach out to those of us who are or will be this country’s movers and shakers, to help them embrace whatever freedoms they want and are capable of, regardless of disability. To that end, a few rules:

    1. The protagonists of these books don’t necessarily have disabilities. Those who do, do not function only as inspirations.
    2. Protagonists are both male and female–though as a female, I have read more books starring girls and women, so there may be more of those.
    3. Protagonists deal with a wealth of problems and triumphs, because everybody feels shackled by something, disability or not.
    4. Every protagonist has a different definition for independence. It could be physical, emotional, spiritual, or something else.

    Here we go: a few of my favorite independence reads.

    Homecoming (Cynthia Voigt). Thirteen-year-old Dicey Tillerman is an adult in a kid’s body. When her mentally ill mom abandons Dicey and her younger siblings James, Maybeth, and Sammy in the parking lot of a mall, Dicey must get them safely to a relative’s home. The alternative is being split up and placed in foster homes. The Tillermans must find independence from the negative images they have of themselves and others, as well as the freedom to define what a home is and which one is best for them. First in a seven-book cycle; the others are great as well, and Dicey’s Song, its sequel, won a Newberry in the early ’90s.

    Johnny Tremain. (Esther Forbes). This classic, still read in middle school classrooms across the country, takes place during the American Revolution. Therefore, a backdrop of the search for freedom already exists. For teenager Johnny though, freedom must be physical and emotional. He loses the use of his hand in an accident, and therefore loses his place as a gifted apprentice silversmith. The adventures that follow place him in league with the Sons of Liberty and force him to face his real shackles–arrogance, pride, and ignorance.

    Escape from Home and Lord Kirkle’s Money (Avi). Fifteen-year-old Maura O’Connell and her brother, twelve-year-old Patrick, must flee Ireland to escape the 1840s potato famine. Eleven-year-old Laurence Kirkle of England runs away from home to escape his abusive older brother and the father who turns a blind eye. The three don’t meet up right away, but once they do, they embark on a shared quest for personal freedom while dodging such dangers as unscrupulous detectives, “runners” who exploit immigrants, and anti-Irish hate crimes.

    The Moves Make the Man. (Bruce Brooks). Jerome Foxworthy, known to friends as Jayfox, loves basketball and is great at it. The problem is, he’s black, and this is the 1960s South. When Jerome is selected to help integrate the local white school, he faces bigotry and skepticism from those on the basketball team as well as others. He also comes of age through his friendship with Braxton (Bix) Rivers, a white classmate with a passion for baseball and family issues. Both boys must craft their identities beyond skin color, familial background, and other obstacles.

    Catherine, Called Birdy (Karen Cushman). Thirteen-year-old Catherine is growing up in 1290 England, but in terms of personality and beliefs about what women can do, she’s centuries ahead of her time. She’s also not about to let her dad marry her off to the first rich, ugly idiot of a man who asks. She comes up with all kinds of crazy plans and pranks to avoid this fate, including running away to join a monastery, becoming a juggler, or becoming a goat herder like her best friend Perkin. Her quest for independence involves not only escaping arranged marriage but also finding peace with where and when she was born and who she will become.

    The Ballad of Lucy Whipple (Karen Cushman). Cushman is great at writing independent YA protagonists, which is why she made the list twice. The protagonist of this second novel is California Morning Whipple, a young teen forced to leave her beloved Massachusetts town for 1850s California after her father dies. Her mother packs up California and her younger siblings, all named for things or concepts of the West (Butte, Prairie, Sierra), to run a boardinghouse for a bunch of rude, stinky, spitting miners. At least, that’s how our protagonist sees it. She eventually changes her name to Lucy because she feels that better suits her identity. This first strike at personal freedom is followed by others she doesn’t even recognize at first, like the time she singlehandedly starts a library system in her new town because she misses her beloved books. Eventually, she learns to make a new life for herself on her own terms in California.

    Things Fall Apart (Chinua Achebe). One of my favorite pieces of world literature, this novel for teens and adults concerns Okonkwo, respected chief of a Nigerian people who must grapple with physical and emotional changes when missionaries come to his land. Members of Okonkwo’s family such as his son and one of his wives have their own struggles for personal freedom within the context of colonialism. Though the ending is sad, what I love about this book is that it shows how the human spirit is strong enough to endeavor to make its own way even when others are ruling over it.

    Girl at the End of the World (Elisabeth Esther). This memoir, which I recommend for adults based on disturbing content, concerns a woman who was raised in a fundamentalist religious cult without knowing it was a cult (and really, isn’t that the way it goes for many members)? The memoir speaks of her physical, emotional, and spiritual struggles for freedom even after she and her husband leave The Assembly; she dedicates an entire chapter to the after-effects of “religious PTSD.”

    The Misfits (James Howe). This is a series of four middle-grade books concerning male and female protagonists Bobby, Joe, Addie, and Skeezie (AKA Elvis). They’re outspoken, overweight, quiet, gay, smart–just “different” in their own unique ways. This makes them prime bullying targets until, in their own books and in their own way, they make bids for independence from negative images. You’ll find all these kids in the fictional town of Paintbrush Falls.

    After Ever After. (Jordan Sonnenblick). Jeffrey Alper isn’t your average eighth-grader. In fact, you might know him as That Boy Who Had Cancer. That was back when he was four. He’s in remission now but afraid the cancer will return. Yet he can’t think about that much because he’s got other problems, like his crush on Lindsey Abrams and the upcoming eighth-grade end of course tests that will determine whether he and his classmates get to go to high school. The problem is, Jeffrey sucks at math, which is a major requirement. When he and his friend Tad, also a cancer survivor, team up to make sure Jeffrey passes math and Tad, PE, what follows is a revolution the likes of which the eighth grade never saw coming. (You can also read prequel Drums, Girls, and Dangerous Pie for a look at Jeffrey’s older brother Steven’s POV).

    Red Ink (Kathi Macias). Recommended for teens and adults due to thematic content, this novel is based on the true story of Zheng Li. A Chinese woman who converted to Christianity after marrying a Christian, Zheng Li was forced into abortion because of the one-child policy and suffers great persecution in a Chinese prison. One especially hardhearted guard singles her out for torment. The book focuses on spiritual freedom. It also brings light to the issue of human trafficking through the related subplot of an American victim named Maggie.

    I am Nujood, Age 10 And Divorced (Nujood Ali). The author of this memoir, recommended for teens and adults, was married at age ten to a man three times her age. The memoir details Nujood’s escape from her marriage and the truth of what often happens to young girls in her home country of Yemen. I Am Malala is a similar book written by the girl who sought an education against Taliban law and nearly paid with her life.

    The Help (Kathryn Stockett). If you haven’t yet read this bestseller, snap it up. Aibileen, Minny, and Skeeter are all strong heroines; there’s also great discussion fodder here regarding freedom vs. “white man’s burden,” civil rights, and other issues.

    House Rules (Jodi Picoult). I enjoyed this story of eighteen-year-old Jacob Hunt, a fictional character with Asperger’s Syndrome. Be aware that his AS is not researched as well as it could be; Picoult tends to give him every possible characteristic a person with AS might or might not have. The novel is also heavy on language and melodrama. However, there is an element of independence here for Jacob, as well as Theo, his younger brother. Both have to learn what “look out for your brother; he’s the only one you’ve got” means, and what that may entail giving up in terms of physical and emotional freedom. The lack of autonomy for Jacob and the people around him also provide good discussion fodder for what a novelist should and should not do when it comes to portraying disability. Recommended for adults based on these findings.

    The Giver (Lois Lowry). Why would you need freedom when your community, run on Sameness, is perfect? Twelve-year-old Jonas thinks he’s free already–free of pain and suffering and complications. Yet when the twelve-year-old is chosen as the next Receiver of Memory, his head becomes filled with the truth–and once you know the truth, freedom and responsibility tangle into a complicated net that makes for a great story. Recommended for older middle-graders due to euthanasia discussions.

    Taking Liberty, Come Juneteenth, Numbering All the Bones (Ann Rinaldi). Rinaldi was and still is one of my favorite authors, and one of the best historical authors for young people I have encountered. These three of her books are not connected in a series, but all concern the journeys to freedom for three slaves–one respected house servant, based on the real-life Oney Judge, one Texan slave whose emancipation remains unacknowledged after the Civil War, and one slave daughter of a master who won’t acknowledge their relational ties.

    The Journal of Ben Uchida. (Barry Dennenberg). Part of the My Name is America series, this story concerns fictional Ben Uchida, an inmate of Mirror Lake Internment Camp during World War II. Try Farewell to Manzanar for a female perspective on Japanese internment.

    Chinese Cinderella, Falling Leaves (Adeline Yen Mah). The first of these books is the YA version of Yen Mah’s memoir; the second is the full adult version. Yen Mah tells her story of abuse at the hands of a family who considers her bad luck because her mother died giving birth to her. This gives rise to her journey toward freedom, found in writing and practicing medicine.

    The Joy Luck Club (Amy Tan). You don’t have to be abused or oppressed to want and need independence. Sometimes you simply need to find out who you are in the scope of bigger concepts like family, country, and culture, as these four sets of mothers and daughters do. A classic and personal favorite.

    The Diary of Anne Frank, The Book Thief, Number the Stars… If you can name a YA or MG book regarding the Holocaust, or a memoir on the same topic, it’s almost guaranteed there will be an element of independence there. Even if the protagonists die during the book, the indomitability of the human spirit still comes through beautifully. For Such a Time by Kate Breslin is an adult novel of the time period, a retelling of the story of Esther, that is a personal favorite.

    The Choosing (Rachelle Dekker). Though Christian-based, this book is not overtly religious. It concerns Carrington and Remko, two people raised in a society where a woman’s only value lies in whether she is chosen to be married. A man’s only value lies in his career. Together, they must decide whether to stay with the status quo or rebel against it, finding their true destinies.

    Ghost Boy). (Martin Pistorious). This new bestseller chronicles the journey back of a South African man who contracted encephalitis as a preteen and became trapped in his own body. As a result, he was remanded to an institution, but ended up writing his memoir.

    Bad Boy. (Walter Dean Meyers). The memoir of an acclaimed YA novelist and his life on the streets of Harlem; concerns his journey off the streets, in which his love of literature played a big role.

    Out of My Mind. (Sharon M. Draper). Fifth-grader Melody Brooks is a good representation of how a person with CP struggles for independence and self-hood. Bullying and skepticism are portrayed with heartrending accuracy, but so is a freedom-affirming surprise ending.

    That’s not at all an exhaustive list; I could go on for weeks. But it certainly is a good beginning, and I hope you and yours will choose at least one to try.