Long Nights

“In a real dark night of the soul it is always three o'clock in the morning."—F. Scott Fitzgerald

"And there's knowing and learning/And the one a light a burning/In the cool dark night of the soul."—"Broken," Michael McDermott

The subject of this Disability Blog Carnival is “long nights and what we need to get through them.” Some of the longest, hardest nights of my life were when Jordan was just born. He insisted on being awake every morning from 2 to 6 AM, which really are the worst hours to be awake, if you think about it. I held him in his room in the rocking chair, looking out the window into the dark, feeling like we were the only two people in the world who were awake. Many of those nights I spent with him on my lap as I researched the condition he’d been diagnosed with—caudal regression syndrome (CRS). I found a MSN message board site that had all kinds of scary images of kids with CRS, and these kids had had their legs amputated. The photos seeemed especially scary because they were in black and white, and the kids’ eyes had black bars covering them, really depersonalizing them. I did notice some smiles on those faces and some very strong arms they were balanced on, but it was their lack of legs, of course, that I focused on. It was just horrifying to me, the thought of a doctor cutting off my baby’s legs.

In some people with CRS, their legs are paralyzed and have circulatory issues, and the person cannot straighten them. The legs are in a fixed “Indian style” position, which can’t even be straightened surgically. So the older treatment is to amputate the legs. This isn’t done as often today, although it is sometimes still done. Jordan’s doctor said, “I won’t do that” when I repeatedly asked him if that was what he recommended.

I do personally think the choice for amputation should be up to the person when he or she grows up. But I have met some people online who are now adults who had their legs amputated as kids, and they say that it was the best thing for them. Not focusing on the ethics of this—that is for another much longer discussion—but there I was, a new mother with a new baby, staring at these black and white images in the middle of the night of these kids with the same condition my baby has, and their legs had been amputated. How I got through those “long nights” I don’t really know, other than just the drive to do everything I could for my baby.

While looking at these photos on the computer and later sitting by his bedside for nine surgeries in his first five years, I’ve also pondered if this is “my fault.” The only “known” cause of CRS is maternal diabetes. They say 16% of kids with CRS have mothers with diabetes. That does leave 84% with no known cause. I do not have diabetes and was tested during pregnancy, too. But there is always the lingering doubt—did I cause this? It has been hard to think about women who take drugs, smoke, do whatever, and their babies are “perfect.” And I tried so hard, thought I did everything right, never took an illegal drug in my life, and my baby has this condition. And every time he has a procedure, these feelings come back to me—did I cause this? When he goes in for surgery, I think well, the doctor has to fix what I didn’t know how to do. I see friends and relatives having babies apparently without a thought that anything could possibly go awry. I’ve thought, “I didn’t grow him right” so many times these past six years. I know he is an incredible boy, and just thinking of all he has accomplished brings tears to my eyes. There are so many good things about it—“the people we wouldn’t have met,” the not taking things for granted, the cherishing the small milestones, life in wonderful Holland, right?—but this is a harder life than he really had to have.

So the answer to what it took to get me through these long nights? Early on, it was just determination, not wanting to fail my new baby—again. I think the humility that came from being 9 months pregnant with a broken ankle, although I was quite miserable at the time, gave me a little extra understanding. Later, I think I was able to get through these “long nights” just because of him—the spark I saw in his eyes, even when he was a newborn in the NICU and even though they told me he wouldn't live to age 1. His first real laugh, which happened in the middle of an orthopedic appointment at Shriners. His smile no matter where we were or what we were doing. His determination in taking steps with a tiny little walker, just months after surgery, when it seemed like he could barely move his legs at all. At ages 2 and 3, how he became quite a swashbuckler with his all-absorbing interest in pirates, swordfighting, jumping around, launching himself off his walker, and scaring me half to death. His determination on the soccer field playing against kids twice his size. And now as a first grader, the way he is the leader out on the playground, telling the other kids what they’re going to play that day, as he leads them around using his neon green crutches. I think it’s just been because of him that I’ve been able to do all of this. These little glimmers of hope, of accomplishments, of just being “back to normal” in our lives—these are what sustain me.

Disability Blog Carnival: Evidence

The July Disability Blog Carnival with the theme Evidence has been posted at Deeply Problematic. Check it out for tons of great posts!

Evidence

The theme of this month’s Disability Blog Carnival is Evidence. This comes up a lot for me, but I’ve never thought of it in that term. One example is providing evidence to parents of kids without disabilities that my son, when out and about walking with his crutches, constantly gets stared at. “But he is sooo cute—that’s why they stare! I’d stare, too, because he is sooooo cute!” is the main explanation I get. This makes me second guess it, too, because I know he is the most handsome boy who ever lived! Yet I still notice that when he is sitting down at a table and no one sees the crutches, no one is swooning over his movie star good looks. They only look up and have their eyes popping out of their heads when he starts to walk. They only offer alms for the poor handicapped boy ughghh and ask Jesus to cure him UGHGHGH when they see him walk.

Oh but wait, to them, he can’t actually walk. “Why can’t he walk?” kids often say as he walks by. When he used to use a walker, we’d get this question a lot: “Why is he WALKING with that WALKER? Can’t he WALK?” “Uh, he is walking,” I’d reply. “See him?” More evidence I must present—one foot in front of the other equals walking.

I also feel like I have to provide evidence that he is doing well, that no one should feel sorry for him or for us. That would be terrible to me, if anyone pitied him. So I have promoted him as being totally all good, well behaved, and happy at all times. Because if he isn’t happy all the time or if he misbehaves, won’t people think he “hasn’t accepted his disability?” That he “hates being different?” Won’t they think he isn’t that inspirational disabled person we all prize so much but instead is a “miserable cripple” who “hasn’t accepted his fate?” Well guess what, a confession—he sometimes has his meltdowns, too. But the meltdowns are not over having to wear braces or walking with crutches. They are about regular kid things like when we make him stop playing video games or when we tell him it’s time to go to bed.

Then at his school, I have to provide conflicting evidence. He just finished kindergarten, so last year I had to present evidence that he was capable of being independent in a classroom and throughout the school building. But I had to temper this evidence with his being too well off because we didn’t want to lose his physical therapy time. The PTs presented evidence that he was doing so much better than expected, that he is “extraordinarily functional for his level of impairment.” I felt like I had to tone that down somewhat and present evidence that perhaps his keeping active through PT and other exercise is what is keeping him so functional. It’s hard because I want people to know he’s doing well, but I don’t want them to think he’s doing so well so that we lose the supports that are perhaps contributing to how well he’s doing. Phew.

Overall, all this evidence providing is exhausting. I think sometimes if we didn’t have to do all this, what would we be doing? What would fill our time? Could we just exist in the world, not so much under the lens that we seem to be under from medical professionals, the school system, and the Stare Patrol? We are doing well but would do a lot better without all this pressure. I rest my case.

Disability Blog Carnival #65: Balance

Welcome to the Disability Blog Carnival on balance. I have been thinking a lot lately about how hard it is to balance knowing about issues related to my son's condition and his education with just treating him like a regular kid. It's easy to get wrapped up in what Kathie Snow at Disability is Natural calls "Disability World"--all the therapies, doctor visits, IEP meetings, etc. I recently saw Kathie speak at a 2-day conference, and as much as I loved what she had to say, I wondered if even attending the conference was being part of Disability World. I know I need to be knowledgeable, but I really need to devote my time to making sure my son has a "regular life" (whatever that might be). But then the more I think about creating a regular life, the less regular it becomes, in a vicious circle. Add this to the “regular” stuff of raising a child—who is intelligent, hilariously funny, creative, adaptable, adventurous, and outgoing—and it becomes hard to balance it all. Let’s see if any of the bloggers have solved the problem of finding balance.

Standing, Walking, and Dancing—It’s All About the Angles
At Wheelie Catholic, Ruth has posted Oh grasshopper! To achieve balance, you must get the right angle. She talks about literal balance, which means to her getting the angles right: “Achieving balance in my world usually comes down to angles. With limited grip and grasp, I often feel like a juggler in my kitchen. It's become second-nature to me to think of angles whenever I try to pick something up.”

Wheelchair Dancer has posted The Art of Balance: “Balance is such a literal kind of thing for me. I am aware of it every day -- in part because my personal life is one of such extremes that it is very unbalanced, and in part because, in my dance professional life, my ability to balance (or not) is crucial.” She describes balance while she is dancing, providing this eloquent description: “Frequently, I think we present or think about balance as a moment of held stillness, as a moment where you seem to stop motion -- perhaps against all odds.”

And TherExtras also discusses balance in the literal sense, as in standing, at Adaptations to the Environment. She talks about the benefits of using standers for kids who cannot stand without assistance. (TherExtras also invites us to participate in another blog carnival with the theme Childhood Expressions. Due... uh oh, today!! The carnival will be posted by April 25. If you can’t submit anything by then, at least check out the carnival when it posts!)

Figurative Balance
Spaz Girl at Butterfly Dreams writes about balance in literal and figurative ways at Balance, or Lack Thereof. She describes finding balance as “incredibly complex,” from walking down the hallways at school to balancing her work. And she ends with a hilarious last paragraph, reminding us of the importance of humor in balancing our lives. William Arthur Ward (known for numerous “inspirational sayings” such as “If you can imagine it, you can achieve it. If you can dream it, you can become it”) said about balance: “A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life.”

Haben at Haben's Travel Blog writes The Shadow of Stereotypes about an incident when she fell down and faced "magnificent drama" by onlookers. Taking on the thoughts of many of the bloggers, she finds that there are both figurative and literal ways of thinking about balance and disability. This "can also be seen as the general struggle of people with disabilities to balance an identity as independent and autonomous individuals, and individuals who need a little help now and then," she writes.

At A Writer in a Wheelchair, Emma writes in the post titled Balance: “One of the hardest things for me to balance however is the judgement of whether or not a thing is a disability thing or not. It's led to me being accused of being too ‘disability centric’ at times.” This reminds me of my attempts at balancing “disability things” with “regular things” in my family’s lives.

Cheryl at Finding My Way: Journey of an Uppity Intellectual Activist Crip says she did not plan to write for this carnival but was inspired by Emma’s post above. That is so great, one post inspiring another, all for this carnival! :) Ahem… anyway, Cheryl says at her post titled simply Balance that she has a visible disability and an invisible one, and she finds it difficult to balance how to deal with both of them and how to let other people know about her disabilities.

Balancing a Career, Activism, and Disability
brilliantmindbrokenbody posts Balancing career and disability (part 1), writing “Part of the trouble is that the world outside tends to have an all-or-nothing perspective on work: either you can or you can’t work full time, you can or you can’t.” I look forward to part 2 on this important topic.

irrationalpoint at Modus dopens talks about the balancing act of being an activist and having a disability at Everything I ever needed to know about access activism, I learned in kindergarten. She is expected to always do more and more, and sometimes she must refuse for the very reason that she has a disability that causes fatigue.

Some Tips on Finding Balance
Finally, Terri at Barriers, Bridges and Books writes Balance... Yeah, It's a Problem, leaving us with some tips for finding balance. “Time for some reading, some writing and some socializing. . . . Because they just aren't as frivolous as they seem.”

Thank you for all the wonderful posts! I don’t think we have solved the problem of balance, but we have reflected on it in a unique way.

Next month's theme is Story at Barriers, Bridges and Books.

Theme for April Disability Blog Carnival: BALANCE

I'm proud to be hosting Disability Blog Carnival #65 for April. The theme is balance. How do you find balance in your life--with your family, job, school, home, time for yourself? What works for you and what doesn’t? How do you feel when you are in balance? How do you feel when you aren't?

You can also think of this as literal balance, such as how I am so clumsy yet my son using crutches rarely falls down. Penny Richards from Disability Studies, Temple U. says that she sees balance as a caregiver issue, too. She says she exercises not for strength but to increase balance. She knows that when carrying her son, she "just can't afford to fall. Ever, not even once."

Submissions are due April 19, and I'll post the carnival on April 22. Leave your link as a comment here, email it to me, or send it to Penny. I look forward to receiving lots of great posts, so please participate!!!

Holidays

Since having my son, or actually since before even having him, my holidays have changed profoundly. When I was pregnant with him, I had a lot of bleeding in the first few months, and every day, every minute of the day, I thought I was losing him. It was right before Christmas, December 15, 2003, that I had my first ultrasound. I had had a miscarriage a year and a half before and was terrified of going through that again. But this ultrasound showed that he was there and that his heart was beating. I remember standing on the sidewalk outside of the hospital, looking at my first photo of my son, crying in the cold wind, hoping I would be able to see him be born alive.

That same Christmas, just a few days later, we had our big annual family Christmas party with all the aunts and uncles and cousins. I spent half the party in the bathroom bleeding, thinking for sure I was losing him, crying as I heard all my cousins’ many kids running around, being noisy, being kids—kids like I’d never have. But the worst part was overhearing my father complaining to my cousin that he didn’t have any grandkids yet. He actually did have one, only I was bleeding him out.

But my son did survive and was born, the following July. The doctors weren’t sure what was going on with him and told me “mental retardation, heart problems, and die before age 1.” But he did live, and he has a “normal, healthy heart,” the cardiologist told us months later, and he is very bright. But that first Christmas with him, when he was 5 months old, was bittersweet. I knew by then that he didn’t have the condition that would have caused him to die before age 1. But that dire prognosis was never far from my mind. It never really went away—and that feeling of being so close to the brink never has gone away, even 5 years later.

Now things have calmed down, and even though he has had eight surgeries so far, his doctor visits are less frequent, and he's doing really well. He is thriving in kindergarten, making new friends, reading and writing. But every year when we have that family Christmas party, I take a moment to pause, close my eyes, and listen to the excited sounds of all the kids right before Christmas, talking about what presents they are hoping to get. And I make out my own son’s laughter in that crowd. Now he is just here, a kid like any other, a part of our family among all the other kids. But I will never forget what it took to get us here.

The Way Other People See Him

This past week we were on a short five-day vacation at the beach and experienced three extreme incidents of rudeness and ignorance toward Jordan. The first was when I "talked back" to people staring at Jordan and was told to "go to hell," as if I were in the wrong. Second, a man tried to give Jordan $5, I guess because he's a charity case. Third, a woman with a cross around her neck told Jordan, "BE HEALED." I told him:

You are perfect as you are. Nothing about you needs to be healed.

Most of the world sees him as someone to be gawked at, given charity, in need of healing. But this is how I see him:











Can anyone else see this??

5 Years Ago Tonight

5 years ago tonight, my beautiful boy was born.

5 years ago tonight, the nurses gasped and the doctor grew distant and silent. Someone muttered, "There's something wrong with his legs." I shouted, "What's wrong with him?" but everyone had their backs to me.

5 years ago tonight, my husband looked at our baby for the first time and thought, "He's going to be a champion!"

5 years ago tonight, my husband held our baby and smiled for the cameras as the doctor told me: "Mental retardation, heart problems, and die before age 1."

5 years ago tonight, my mom would not leave the hospital until we decided on a name. I knew she didn't want him to die without a name. We named him Jordan.

5 years ago tonight, after all the parents, in-laws, and brothers were gone, after I was passed out from the morphine, my husband took our new baby into the hospital room and in the dark uncovered his legs, crying with worry but also trusting in God.

5 years ago tonight, our lives changed in the most profound way as we started on our journey with the most wonderful little boy.

HAPPY BIRTHDAY, JORDAN! We are privileged to have you in our lives and are so, so proud of you.

Field Trip

I saw something really interesting at the hospital yesterday. Jordan and I were there for an ortho visit, and I noticed a group of about 15 kids around kindergarten age who looked to be touring the hospital together. I knew they weren't patients because I saw them boarding a school bus to leave. I really do hope they were there visiting a kid from their class who was a patient there. However, my first thought was that they were on a field trip. "How nice that this is their field trip," I thought, "rather than their real lives."

Some kids are only visiting this life of hospital visits. Some kids go through life with runny noses, ear infections, and nothing more. These kids can visit a children's hospital as outsiders, be led around by a friendly hospital volunteer, maybe try on a doctor's white coat, listen through a stethoscope, maybe have a few laughs over trying on non-latex gloves and blowing them up like a balloon. They can learn about doctors and medicine the same as if they were visiting a museum.

Other kids are constant patients undergoing testing, surgeries, PT; being fitted for braces, wheelchairs, walkers, crutches. Some kids' lives have stopped altogether as they undergo chemotherapy. Strange how different life can be if your roll of the dice is to have a chronic medical condition. I would have loved to save Jordan from this life of hospital visits and therapies. But somehow we know something the field trippers don't know--how fragile life is and how thin the line is between them and us.

It's Not Contagious

Today was a beautiful day, so we headed out to the playground. We went to Jordan's favorite one (and mine!), Everybody's Playground. It's an accessible playground--people with walkers, crutches, and wheelchairs can get right up onto it easily because of the wide ramps. We had Jordan's birthday party there last year and are thinking of doing it again this year.

The Stare Patrol, as we call it, is always out in full force there, and I try not to be bothered by it. But it is amazing the different reactions to Jordan--the ignorant, the rude, and the outright bizarre!

The parents my age don't stare that much or seem overly concerned with Jordan, but some of the kids stare and ask questions. I overheard two kids discussing Jordan's crutches. The crutches were lying on the ground near them, and they looked like they really wanted to touch them. The boy said to the girl, "They're fake," pointing to the crutches. He reached out slowly to try to touch them, probably thinking I wouldn't notice. When I glanced over, he said, "Uh, does he need these?" I said, "Yes." Then Jordan grabbed them and ran away, and the girl said, "They're real."

Then this was pretty cool, actually--Jordan kept using his crutches as "guns," so one boy in particular really wanted the other one to also use as a gun. My husband said to him, "They're not toys," but it was clear that they are to Jordan!

The older women, on the other hand, are the worst. First, the pity approach: I heard one grandmother say, as Jordan ran off using his crutches, "God bless him." Gee, thanks. God bless you and your grandchildren, too. Believe it or not, Jordan doesn't need any more blessing than anyone else.

This other older woman really got my ire up. Her grandson was a few years older than Jordan and kept following Jordan around. They were having fun playing together. Often kids do just come up to Jordan, and Jordan leads them around. He is especially commanding on the playground, and even more so on one like this with a fake pirate ship on it! He was leading this kid around saying they were looking for treasure, etc. But the grandmother was not happy about it. She told him a few times to be careful. Then she called him over to her and stage whispered, "I told you, go over there and play by yourself." He ran off but minutes later was playing with Jordan again. I saw him sitting on one side of the pirate ship, but when he saw Jordan, he got up and moved to sit next to him.

I told my husband I was going to say to that woman, "It's not contagious." I can understand her not wanting her grandson to be the one to knock over the "poor crippled boy." Ughhghg. But to ban him from playing with my son, when all the kid was doing was treating Jordan like any other kid? Strange, and if you think about it, truly terrible. Heartless? Selfish? Fearful? Is my beautiful, joyful boy someone to be feared? Or as that kid today realized, someone to conquer the playground with?

Thrown in the Rubbish Heap

I noticed earlier today that I had an anonymous (of course!) comment on one of my past posts saying something like, "Why do optimistic people like you write things like this? You should throw your baby in the rubbish heap."

My first instinct was to just delete this comment (and I did). This is MY blog, so this person doesn't get an equal forum with me. And I thought I should just try to forget it, not dwell on it, certainly not let such a thing take up a moment of my time or be seen on MY blog.

I certainly am trying not to let this comment hurt me. This person does not know me or my child (eg, anyone who knows me would truly get a belly laugh out of my being called optimistic). This person must not be a parent at all or could never dare to think or write something like that about someone else's child. But it is this attitude that I worry about for Jordan when he's out in the world by himself someday. He is just someone's "trash," not a person? Not a valuable part of this world just because he uses a device for walking?

That the person wrote "rubbish heap" makes me think this was probably a British person, so I think back to Gail Landsman's wonderful book Reconstructing Motherhood and Disability in the Age of "Perfect" Babies . She believes that one reason Americans stick with their children with disabilities rather than throwing them away like has been done in so many cultures throughout time is because of Americans' belief in the underdog, in the "against all odds," pull yourself up by your boostraps story. And nowhere is this idea more potent and prevalent than right in the area where I live, right outside of Philadelphia, PA, home of Rocky Balboa.

The reason I bring this up is because I've often struggled with the notion in disability studies that "hero or villain" is a harmful concept. I do agree, of course, that people with disabilities shouldn't be viewed in the villain role, as in the reaction to Dick Cheney's use of a wheelchair at Obama's inauguration. And I do agree that the "inspirational story of the week" wears a bit thin, too. But as a parent of a child with an impairment, I am exceedingly inspired by him every day. Is that okay because it's a "parent thing?" Do all parents feel this way?

Furthermore, is this inspirational thing what has kept us Americans from abandoning our disabled infants, keeping them, helping them to be the best they can be, just like we do for any other child? So is it a good thing to keep these inspirational stories coming?

Landsman also says in her book that mothers of children with disabilities—American women—often try to create a narrative to deal with their children's conditions, creating kind of a linear "movie" of their lives as a progression. I noticed that in myself, too, especially in the short movie I made of Jordan's life when he was 3 years old (see top left of this page for a link to it). Called "Jordan's Life So Far," I essentially plotted out his life as a linear progression from birth with clubfeet, dislocated knee, etc. through surgeries that "fixed" him to normalizing images of him doing everyday things that any kid does—playing the drums, painting, etc. I noticed shortly after I created it that this is what I did—presented his life in an "inspirational" way that is expected in this country. Is this so bad?

What I do think is bad is feeling the need to even do this, to make him not just normal but above normal. Would I idealize him anyway because he is my child? Or do I truly see him doing things I don't think I could do—be happy in the face of surgeries and not being "normal?" It's strange to me, too, as someone who never wanted to be "normal" or "average." I wanted to be different. I wanted to be extraordinary but never was. Now that he is different, am I trying to make him ABOVE everyone else, present him as EXTRAordinary?

But back to my original point about the anonymous comment on my blog. My first thought was that it's people like that who should be thrown in the "rubbish heap," not my beautiful boy. But wouldn't it be better to say that whether we are "normal," "disabled," "extraordiary," "impaired," or even a rude anonymous blog commenter, none of us should be thrown away, that all of us have value?

Disability Blog Carnival #53: Pot Luck

With the topic Pot Luck, I hoped to receive a lot of varied submissions. And I sure did! True to the topic, the submissions were all over the place! This was my first blog carnival, and it was so much fun putting it together! I hope you enjoy the offerings here.

(Mis)Perceptions and Labeling
To start it off, Andrea from Andrea’s Buzzing About talks about empathy in people with autism in You Just Don’t Get It. She writes, "If you cannot see that autistic people do indeed have empathy, then possibly you are not perceiving their distress, identifying the feelings being experienced, discerning probable causes, and being able to identify with such situations."

Laura at Touched By an Alien: Life as I Know It writes about the controversy of labeling in order to receive community resources. She rightly asks if services should be more geared toward the individual rather than based on a label.

Cheryl writes If You're a Tard and You Know It... about the book The Short Bus: A Journey Beyond Normal by Jonathan Mooney. She recommends this book and its great disability pride sentiments and from the sound of it, just because it's fun.

Accessibility: IKEA, Pubs, and Dick Cheney’s Wheelchair
Accessibility was on several people’s minds. Lauredhel of Hoyden About Town was at first impressed by IKEA’s accessibility—until she tried to leave the store!

Emma at Writings of a Wheelchair Princess tells us about recent complaints she has written about accessibility issues she’s encountered. “I will always be making complaints because how else will the world change?” she asks.

I also received a few thought-provoking posts about Dick Cheney’s use of a wheelchair at the presidential inauguration last month. Laura writes about Cheney’s Villainy: Nothing to Do with His Wheelchair. She writes: “We don’t need another villain in a wheelchair. A villain he may be, with shared responsibility for torture, repression, and all kinds of other crimes against humanity. But the wheelchair has nothing to do with it.”

Liz also covers this topic at Deconstructing Cheney's De-Inaugural Wheelchair. She writes: “How bitter, but how very expected, that the top levels of our own government, the most powerful men around, can't pull it together to obtain a halfway decent wheelchair and decent access, for one of their own. That exposes the deep, deep ignorance in our country about access for people with disabilities, and how far we have yet to go.”

Pity and Incompetence
At the blog Coral and Opal, there is a good commentary, Some Laughs Are Cheaper Than Others, about recent comedy skits about David Patterson, governor of New York. Even humorous skits should not “further the misconception that blindness is part of incompetence,” they write.

Speaking of demeaning views of people with disabilities, we must mention our old friend Jerry Lewis! The excellent blog The Trouble with Jerry has been cataloging Lewis’ use of pity to raise money for muscular dystrophy research. They recently posted the Academy of Motion Picture Arts and Sciences’ response to a letter opposing Lewis’ receiving a humanitarian award. Equating Lewis’ patronizing and pity-based approach to people with disabilities to "some scratches in the paint job” on a Lamborghini, the Academy just doesn’t get it and is sticking by its intention to give Lewis the award. Can’t say I’m surprised. . . .

Honoring “Genuine Inspirations”
I received a few posts on people with disabilities who have been true inspirations. I know, I know, but check out Romeo’s post on Tom, “the most famous autistic savant of all time,” who was a musical genius.

PhilosopherCrip talks about a “genuine inspiration”—I like that!—in a “heartfelt remembrance of an activist and a ‘force,’” his friend Annie who recently passed away at age 24. Annie’s philosophy of life was “Embrace diversity. Educate your community. Empower each other. Love life.” A little bit different than that Lamborghini with scratches on it above, huh?

And who isn't the biggest inspiration to us parents than our children? I received some great posts from mothers who blog about their children. Sally at Maggie World talks about her daughter’s communication abilities at The Sounds of Silence. Since getting her trach, her daughter communicates without her voice. Sally misses Maggie’s laugh and how she used to say “mama.” “We communicate fine without that one word, but it was always nice to hear,” she writes in his heartfelt post.

Ricki’s mom at Beneath the Wings gives us several thought-provoking posts about life with her daughter. On one occasion, she found running away to be the best response. It’s better on the nerves and the eardrums, she writes. She tells us about Ricki’s shaking off an annoying offer of help with something she could do perfectly well herself, thank you. On yet another occasion, Ricki’s mom found herself teaching a future special ed teacher a lesson about rights and respect . And last, she deals with teachers who let Ricki get away with murder. All in a day’s work for a mother, huh? :)

Miscellaneous
Heather from Learn-gasm provides a nicely organized list of the top 100 gender studies blogs. Anyone have a list of top 100 disability studies blogs?

A few posts discussed specific conditions and how they should or should not be treated. Dean at The Back Pain Blog talks about Herniated Discs and the Catch-22 of Rehabilitation. Rebuilding a person’s back isn’t easy, but Dean says it can be done.

And Ettina of Abnormaldiversity talks about side effects of behavioral treatments. She also reports on a case in Canada concerning a woman with Asperger’s. Ettina writes: “Much as many people would like it, being nasty and verbally abusive does not take away your human rights.”

Barbara at Barbara's Tchatzkahs tells us about how the topic of autoimmune diseases is pushed under the rug even though these disorders are so prevalent.

Alicia at Temporarily Disabled writes about warning signs her body was giving her when she was just in the fourth grade. This is her first entry in what should be a great blog. She tells us to stay tuned; I know I will!

Eminism.org reports on a recent symposium at the University of Washington on the “Ashley treatment,” or "growth attenuation". No disability rights activists were present at the conference, which is quite disturbing.

Terri at About Partners in Policymaking writes about participating in New York State Partners in Policymaking (NYSPIP). She tells us that PIP covers “cutting-edge ideas and principles,” and the best part of the program is the relationships that are built there. PIP exists in most states, so look into it!

Keeping Hope Alive
I’ll end with some optimistic thoughts. At Life of John , John discusses keeping hope alive about finding that special someone through online dating. Good luck, John!

Frances tries to look on the bright side about the current financial crisis in her Independent Living Journal. She writes, “… perhaps now it's time to back the people who don't fit into the narrow stereotypes of traditional success, and see whether imagination and good-will can get us a bit further than recent economic theories have.” Here’s hoping!

And finally, Terri at Barriers, Bridges and Books shares the post Impossible? about her hopes that our new president can make some progress for people with disabilities.

Phew! All of these posts gave us a lot of food for thought, and I hope everyone had their fill (I know, pretty bad)! Thank you for all the submissions. I think this topic really worked out well—broad enough to be able to include tons of different topics and experience many different blogs. But wait, don’t go away too fast—anyone going to help me with the dishes???

Announcing the Topic for Disability Blog Carnival #53: POT LUCK

The latest Disability Blog Carnival is up at DCB 52: Things That Are Therapeutic. There are a lot of great posts, so check it out!

I am hosting the next carnival, and I want to announce the topic: Pot Luck. Thanks, yanub (of Yet Another Never Updated Blog), for your feedback that a broader topic might invite more participants. And the crazy holiday season is over, so I’m sure you all have your blogging caps on! You can submit any kind of post you want for this one. Hopefully it'll open up a lot of great discussions, too!

Submit your posts for the broadest topic of all, Pot Luck, by February 9 for the February 12 carnival! I look forward to reading all your great posts and hosting the carnival—it’ll be my first one! :) I hope it'll be a good one. As yanub said, “When everyone brings their favorite dish, no one goes away hungry!”

Late addition:
A few people have indicated that they aren't sure what "pot luck" means. Maybe it's an American thing??? So, here's a definition from Dictionary.com:

pot⋅luck –noun
1. food or a meal that happens to be available without special preparation or purchase: to take potluck with a friend.
2. Also called potluck supper, potluck dinner, potluck lunch. a meal, esp. for a large group, to which participants bring various foods to be shared.
3. whatever is available or comes one's way: With fluctuating interest rates, homebuyers are learning to take potluck with the banks.

Basically, this carnival includes whatever you have, whatever you want to submit, anything goes!

Things That Are Therapeutic

I have been seeing a psychologist since my son was born. There, I said it. I was originally diagnosed with adjustment disorder.

Adjustment Disorder is an abnormal and excessive reaction to an identifiable life stressor.

I don't agree that my reaction to being told my baby was going to die before age 1 was abnormal and excessive. But nevertheless, I do agree that adjusting to my new life and expectations was stressful and difficult. Since then, I have found other ways to deal with stress (although I continue with my therapist!! :).

I didn't always use the "right" kind of therapy. I threatened my drug and alcohol counselor husband that I was going to start drinking. But I've never been much for alcohol, so that didn't work out. What did work out for a while was "retail therapy." When Jordan was a baby, I thought if he was going to have surgery, he deserved all kinds of expensive toys and cute outfits, even if we couldn't really afford them. And I deserved some new clothes, music, books, too many dinners out....

Since then, I've come up with some more effective and less destructive ways to deal with stress. Getting involved with disability studies has been therapeutic for me. It is no longer just my child, no longer just me as a parent. Disability studies has given me a wider perspective and a community.

I also have an "alone night" every week that has been therapeutic for me. I finally realized that my husband has one night out a week playing Dungeons and Dragons, of all things, so I should have a night to myself as well. I usually have something "bad" but delicious for dinner and then go shopping and to the movies. I don't like seeing any sad movies anymore or even many "dramas." I like purely escapist, silly movies.

The other usual things are also therapeutic for me: music; writing; a long, hot bath; putting on a nice-smelling lotion; getting a nice haircut. And actually, spending time with my son is therapeutic. It has never been him that I've been trying to escape from, that has caused me to need something therapeutic; it's the rest of the world, with their stares, their prescriptions, their red tape. Another parent told me early on, "You'll find your new normal." I think after 4 years, I finally have. I think all along I've been adjusting to making this a normal life for us.

Looking for STARING STORIES

I'm working on a paper about parents of children with disabilities, specifically parents’ reactions to STARING. I want to explore parents’ reactions, dealing with stares, how it makes them feel, how they react, if they intervene and if so, how, and so on.

If you have any stories to share, please email me at twxee@aol.com. I will not use your or your child's real names, of course!

Also please feel free to pass this around to anyone else you think can help!!

Capacities and Capabilities

A strange thing about Jordan—or maybe the least strange thing about him—is that whatever people think he isn’t capable of doing is what he wants to excel at. He was born with multiple orthopedic issues such as dislocated hips, a dislocated knee, club feet, and the ability to only move one of his toes (the big toe on his left foot). He walks with a walker or forearm crutches (we call them “ski poles), and he wears braces.

He is very smart and verbal and always has been. But what he wants to excel in are physical things. He throws himself around, he fights with swords, he does stunts on his walker. He is already planning his fifth birthday party—9 months away—as a wrestling party, more specifically, a “smackdown” party. It’s going to take me these 9 months to convince him to have a different theme!

Over the summer, we went to a birthday party for a girl in his class. It was at one of those “bouncetown” places. Right when we got there, the birthday girl’s mother came over to us and said, “There are some things over there that Jordan can play with!” pointing to the “soft play” area for infants. There were about four little foamy pillow-like things for babies to play with on the floor. “Yeah, sure,” I thought. “Just watch him.” He then went and climbed up a huge slide using only his arms, used a rope to climb up another one of the bouncy things, and truly kept up with all the other kids.

Recently when we were going through a lot of stressful things with both my husband’s and my family, it was affecting Jordan at school. He “kept to himself” in the classroom, the teacher told us. But still, out on the playground, he was the usual leader, getting his classmates to trail after him while playing “cops,” and “arresting” nearly every kid on the playground.

Last week they had a bike-a-thon at his school to benefit St. Jude’s. We brought his arm-powered Amtryke in for him to use. He needed help getting around the track, but he told us he “won” the bike-a-thon. I don't want him to be deluded about his physical skills, but I do want his confidence to last.

“I’m wiggling my toe!” he said to me the other day. That was his first acknowledgement about the movement in his toes. But the interesting thing—he didn’t say, “I can’t move nine of my toes.” It was that he can move one of them. The old clichés apply—he’s teaching me more than I’m teaching him. How am I supposed to reconcile not liking it when people say that he is “inspirational” with my own feelings that he does inspire me? He does reveal things to me every day. I feel like I'm not doing any of this; I'm just along for the ride, his loyal follower.

Jordan's Dream

"I had a dream that they let me hand out the forks at school." That's what my 4-year-old son said yesterday.

"Do other kids hand out the forks at school?" I asked him.

"Yes."

"Do they take turns?"

"Yes."

"And you don't get a turn?"

"No."

OH, HELL NO.

His school, which started out great, has gone downhill lately, with teachers leaving all the time. It seems like every few weeks someone is gone and a new teacher is there. It's hard to keep up. Ever since this has been the case, he hasn't liked school as much. He is a very sociable kid, and what went from enthusiasm earlier in the year has turned into the opposite. Changing teachers so much is really affecting him, it seems.

He LOVES to help around the house. He loves doing the dishes with me, and I give him the heaviest pots to put away, the glass bowls, everything (except the sharp knives!!). He feeds the dogs and sweeps the floor. Of course, he cleans up his toys. So it's his DREAM to help out at school. Could my heart be breaking any more than this???????

My husband and I went in to talk to the teacher today. She said, "Okay, I'll do that" and went back to writing something. A weekend full of discussions about how to handle this, what to say, how to explain that we EXPECT INCLUSION, boils down to a dismissal by the teacher. "Are you satisfied with that?" I said loudly to my husband. "No," he said, and we continued to talk to her. He has a bag on his walker that helps him carry things. We expect him to be included just like anyone else. "Okay, I'll do that today," she said. TODAY? No, this should be an overall thing. I almost snatched up Jordan and took him out of there. He sat at a table nearby and was listening to what we said to her. He is still at the stage where he thinks his father and I can solve all the problems of the world. IF ONLY.

We talked to the co-director of the school, and she said she would observe the classroom today and then get back to us and then tell the teacher what changes she needs to make. This seems to be under control for the moment. We would switch him to another school, but if we do that every time he is discriminated against, would we be switching schools constantly? Can we do anything to get them to change? Do they need reminders from time to time? Or is it IMPOSSIBLE??????????????

He is 4 years old now. I do not look forward to all the fights we will have to keep having over his education for the next 14 years. But believe me, I am up for the fight. He is going to know that he will be included. He is going to DEMAND to be included. He is not going to be like me as a kid, shy and letting everyone walk all over him. He is going to continue to see us demand equal treatment, and if he doesn't get it, they are going to see us, hear us, over and over until they get it.

Postscript: Jordan gave out the forks today at school. It makes me cry to think about this simple thing being his dream. It also makes me cry that someday soon I won't be able to solve everything for him so easily. My boy is growing up--is the world ready for him???

Baby Feet

Baby feet. When you think of them, you think of something beautiful and amazing—tiny yet somehow strong, envisioning all the places that newborn baby might walk and all the things he might do in his life. A new beginning with new, soft, beautiful, adorable feet to use on the journey. You just want to kiss those cute wittle toes.

It all starts with the baby shower. The gift tags, gift bags, greeting cards—so many of them have pictures of tiny baby footprints on them. The mother-to-be might get a kit to press the baby’s feet into clay to make a keepsake of the footprints. Special frames are used in anticipation of the big event—the baby’s birth and the footprints, which can be framed for posterity or put into an album. 10 perfect fingers and 10 perfect toes. These frames often come with little poems:

Two little feet, ten little toes,
Leave their impressions today.
Soon they will wear two little shoes,
And be running and jumping at play.
Two little feet, too little time,
Before they are walking to school,
Kicking a rock, or skipping a rope,
Wading a puddle or jumping a pool.
Two little feet, one little child,
Will soon go their own way,
But footprints in my mind recall,
They stood here yesterday

Or short and simple:

Little hands, little feet
Pure and precious, and Oh So Sweet!

A baby makes footprints in our hearts
that never dim or fade.

Where ere a baby's little footprints are found,
There is precious and hallowed ground.

The pitter patter of little baby feet
is music to the ears and ever so sweet!

In parenting magazines, it seems that every single baby and toddler is shoeless and sockless. I did a little study of it recently, and it’s hard to turn 5 pages without seeing some baby feet! No one wants to cover up those precious little toes!

It was into this world that my son, Jordan, was born, a baby with clubfeet along with a dislocated knee and dislocated hips. It was hard to look at his little footprints on the piece of paper. The doctors immediately started saying how he “wouldn’t be much of a walker,” and they began casting his feet when he was 9 days old. He had two surgeries on each foot and one on his knee, all in the first 15 months of his life. Plus, physical therapy, braces, walkers, crutches. Instead of cute little socks or letting him go barefoot, my baby was in casts for almost the first year of his life, and after that, braces almost 24 hours a day, including the brace with a metal bar between the feet. When he was around 4, he had more casting done to align his feet again--with his condition, his feet keep trying to go back to how they were when he was born. They keep trying to adjust his feet until he stops growing, and then they will stay where they are when he's an adult.

When he was about 2 months old and all of this was so new to me, with so many doctors appointments and so many dire prognoses, one day we took a break and went to Babies R Us. We went into the nursing/changing room in the back. I loved that they had this little room set up for us. It was so comfortable, with sofas, a changing table, room to just sit back and relax. Feeling relaxed for the first time in a while, I looked up from feeding him for a minute, and right in front of us on the wall was a huge probably 5 foot by 8 foot poster, a close-up of baby feet! I couldn’t escape!

Many times seeing those photos of the cute baby feet--and even the feet of my friends' and relatives' kids, who always seem to go around barefoot--tore at my heart. Why was it so easy for everyone else? Why were these babies crawling and then walking, not using any devices, not using any braces, when they were still SUCH BABIES, while my son talked like a professor so early, gave us “lectures,” as he called them, at age 1½, knew all the words to book upon book of nursery rhymes before he was 2, started sounding out words at age 3?

Someday I'll jump through puddles,
Take a stroll or run a race.
Someday I'll walk across the street,
Or maybe walk in space,
Someday I'll scale a mountain,
Or I'll join a ballet corps.
Someday I'll walk a tightrope,
Or explore the ocean floor.
Someday these feet will do some things,
That only heaven knows,
But for today they're happy
Just to wiggle all their toes.

Some babies can’t wiggle their toes and will grow up never wiggling them. The only toe Jordan can move is his big toe on his left foot. He has no movement at all in his right foot. But he does jump through puddles—using a walker and braces. He does whatever he wants. He doesn’t know about the stress this has caused me, having him not fit into the “mold” of the “perfect baby” that is drummed into our heads. He is just himself—rough, tough, sensitive yet strong, hilarious, and “all boy.” I now look back at his baby footprints and see something different—the feet were so tiny and were not aligned perfectly, but they are the feet of MY little boy.

Just 2 weeks ago, he took his first steps without his walker or crutches. I was happy about it, but suddenly I realized that it didn’t mean as much to me as it once would have. I know now that the important thing is that he can get around independently, and whatever device he has to use to do that best is okay with me. The doctor is now talking about another surgery for Jordan's feet and knees. I am looking into nonsurgical options because I now wonder if all of this has been too much, trying to align things to make them LOOK good. But if they're working for him... It's a hard balance. I don't want there to be any damage to his knees or feet from walking the "wrong way," yet I don't want him to go through anymore surgeries if they're not totally necessary.

In the meantime, the doctor said that the braces with the bar between them really aren’t doing any good for him anymore. So for the first time in his life, he does not have something on his feet while he sleeps. I lie there next to him in bed and make sure his bare toes are touching my leg. They feel so cozy and soft, like they belong there. The beautiful, perfect toes of my little boy.

New Disability Blog Carnival Is Up!

The new Disability Blog Carnival is up! This is a great one with the topic "adjectives." This is my third carnival I've submitted something to, and it's so much fun writing the entries and then reading how others have tackled the topic as well. So get over there and start reading!!!!

Words That Sting

Sticks and stones
May break my bones
But words will never hurt me.

For this Disability Blog Carnival on ADJECTIVES, I knew I wanted to write about adjectives like “handicapped,” “crippled,” and “lame.” But this didn’t all coalesce in my mind until I was at Target today. I was in line, and the cashier, who was an older woman, was flirting with this young kid who also worked there, “razzing” him about his earring. He was a very tall and lanky and kind of awkward. After he walked away, she turned to me and said, laughing, “They call him Cripple.”

Everything came to a screeching halt. My mouth fell open. I didn’t say anything; I was too shocked. As I left, I wished I would have said any number of things to her. Maybe about my son—he uses forearm crutches and braces to walk; would she have used that “affectionate term” if she saw my beautiful boy? Maybe I should have said, “What you just said equates to nigger, thank you.” I have never said nigger out loud until today, when I described this story to my husband. Some words hurt too bad.

Just like some black people may try to do when they use the “n word,” some people with disabilities use the word crip, attempting to take back the word’s power. The thinking may be, outwardly or maybe unconsciously, "I will be the one to use that hurtful word. Then I have the power, not them." Whether this works, I can’t say for sure. I just know I don’t like “nigger” or “cripple” being used by anyone.

Handicapped is another one. There is a story that the word originated from disabled “beggars,” with their “caps in hand” looking for a handout. I know this isn’t the true origin, but still, this word bothers me. We have a disabled placard for our car, and sometimes we say we’re looking for a “handicapped space.” “Disabled space” somehow doesn’t sound right. But “handicapped” does bother me. The same thing with special needs—whose needs aren’t special to them—and even disabled. Kathie Snow at Disability is Natural writes: “’Disabled’ is also not appropriate. Traffic reports often say, ‘disabled vehicle.”

Two words that are used frequently and carelessly, often by young kids, are retard and lame. I remember last graduation season, a kid named Soeren Palumbo gave this speech about kids using the word “retard” toward his sister. He said, “Your mockery… is nothing but another form of hate."

“Lame” is also thrown around like it doesn’t mean anything or like it’s funny. A few weeks ago, I noticed that when I sent emails on AOL, a signature was being added to all my messages without my knowing it. This signature line was The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now!

I wrote to AOL complaining that I did not appreciate being forced to use this word ever, but especially when sending emails to disability studies groups and groups of parents of kids with disabilities. A tech person sent me a link to disable the signatures but of course did not discuss the political and social ramifications of using the L word.

Now, my son is 4 years old, and the adjectives that hurt him so far are nowhere near as harsh as the ones that hurt me. He is shorter than average for his age, and he has told me that kids at school say he’s “little” and “too little.” I watched him recently climbing up a blow-up moonbounce at a birthday party, and the other kids shouted, “Go, little Jordan! Go, little Jordan!” He smiled, but I know how that word hurts him. To think of how he’ll feel when he hears these other “ableist” words—cripple, lame, handicapped—flung at him… well, I just can’t describe how much my heart will break.

The only thing I can try to do is to let him know the meanings of these words and why people might use them, from my limited conception of why this is. I don't think I will use that platitude about the sticks and stones. I think he is already too advanced to believe that. So far he gets “everyone is different.” That is a frequent conversation at our house. He came home from camp the other day and said two kids there use wheelchairs. He continued: “Some people use wheelchairs, some people use walkers, some people use ski poles—that’s me!—and some people walk without anything. Everyone is different.” I think I might try to get him to change that to unique.