Strollerderby : special needs

Should Autistic Children Be Separated From Other Kids?

Brett Singer — Fri, 05 Dec 2008 21:30:00 GMT

The Disabled Politico blog raises an interesting question regarding Magi Klages, the 8-year-old girl who was kicked out of her Brownie troop after an incident that stems from her autism.

Basically, they wonder if having a separate "disabled kids' troop" is a good idea. "Regardless of the intention, the segregation of children with disabilities teaches all children the wrong message." I tend to agree. But a commenter on the site counters with the following: "Mainstreaming is a wonderful concept. The execution leaves a lot to be desired."

I remember a public service ad that aired many years ago starring Tony Danza (formerly of 'Taxi' and other roles). The tag line was the following: "How do you treat a person with a disability? Like a person!" In the ad, if I recall correctly, the disabilities were of the "in a wheelchair" rather than the "bites self" variety. I feel strongly that everyone deserves a chance to be in whatever situation they want to be in. Obviously it won't always work, and not just with autism. If I had wanted to join the track and field team in high school, that wouldn't have worked either, because I was a really slow runner and in less than stellar physical condition. (As opposed to the speedy Adonis I am now.) And another commenter on the site points out that Magi, "already was in an integrated troop, then her parents took her out of that one and put her in a segregated troop, then the segregated troop's leader kicked her out." Interesting point, that.

I admit to being not completely convinced that either solution is perfect. On the one hand, segregation is wrong, yes? Everyone should be given the same opportunities. On the other hand, what if a child really won't thrive in a particular environment? Is it fair to expect them to stick it out just because we think it's "the right thing to do"? And to slingshot back the other way, how long can you separate a kid from the mainstream before mainstreaming them becomes too great a challenge? What do you think? Is it better to keep "special needs" kids separate from everyone else? Or does that send the wrong message to everyone, special needs or no?

Source: disaboom.com

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Denis Leary Puts Autism Comments In Context

Girl Diagnoses Herself With Autism

Can Music Help Cure Autism?

Kindergartners Vote An Autistic Classmate Out of the Class

Rare Condition Makes Boy Look Like Werewolf

Brain Wave Study Sheds Light On Autism

Autistic Girl Kicked Out Of Girl Scouts

Brett Singer — Fri, 28 Nov 2008 19:00:00 GMT

This is messed up.

Magi Klages, an 8 year old autistic girl, has been a Girl Scout since she was 6. According to ABC News, her "Brownie troop grew too large". So they put her in a smaller troop with only four other girls, all of whom have special needs.

She was kicked out on the first day after she "threw a fit...biting herself and running out of the circle." The troop leader told Magi's parents that she was a "danger" to the other members and would no longer be welcome.

Her mother, Michele Klages, is understandably upset. Michele says that Magi was, at worst, only a danger to herself, and that reactions like Magi's are not unusual for autistic children.

A Girl Scouts of America spokeswoman, Michelle Tompkins, said that Magi being kicked out of the troop was "terrible". A spokeswoman for the local chapter of the Girl Scouts (Wisconsin Southeast) did not respond to ABC News, according to the article.

The Scouts and Magi's parents are looking for a new troop for Magi, which is probably for the best. But it seems extremely unfair to boot the little girl out after the first day. I'm not saying the other children weren't scared; I wasn't there of course, but I can imagine the situation and I'm sure it was uncomfortable. But the first day? I'm not saying there should be a "three strikes" policy or anything like that, but give the kid a chance. According to ABC News, "the Girl Scouts has been historically open to anyone and prides itself on its anti-discrimination policies." I guess not everyone got the memo.

Source: ABC News via Disabled Politico (thanks to a reader for the tip!)

Girl Diagnoses Herself With Autism

Can Music Help Cure Autism?

Kindergartners Vote An Autistic Classmate Out of the Class

They Say: More Children Have Allergies

Rare Condition Makes Boy Look Like Werewolf

Mainstreaming Special-Needs Kids May Suck

Karen Murphy — Tue, 27 Nov 2007 22:37:00 GMT

Two weeks ago I met with my youngest son's teacher and a couple of other personnel in order to decide his fate for the coming year. For those of you who are familiar with the special-needs parlance, it was his annual ISP (Individual Service Plan) meeting. The meeting that will determine how much therapy he gets, what the years goals are, and essentially how much attention he'll get over the next year. And yes, it's almost impossible to imagine where a four-year-old will be in a year in terms of his abilities. So the uselessness quotient of the ISP has not escaped me.

However, it came up in discussions, now that he's getting bigger, where he might be headed in the future: mainstream school? A special-needs classroom? Which is better? And how do you know? It turns out there's no easy answer, and many parents say that the mainstreaming of the past has done more harm than good.

As of 2005, more than half of kids with special needs were considered "fully included", which means spending at least 80% of their day in a "typical" classroom. My 2nd grader can attest to this, as kids are coming and going from her classroom into various therapies all day long. And while the concept of inclusion is wonderful on an idealistic social-acceptance basis, it may leave kids bereft of services they truly need. Many kids may benefit more from the individualized attention they'd receive in a special-needs classroom rather than being one-in-thirty in a class of typical kids.

Not only that, but special-needs kids may be left to their own devices socially as well. Kids sort one another out pretty quickly. My older son spent 5 years with a classmate with Down syndrome, and year after year he'd report that most of the kids simply ignored her much of the time. And this was in a Waldorf school where, frankly, I expected more from the kids (including my own). I can imagine other kids treating my own kid with Down syndrome much the same; after all, he truly is quite different from other kids his age and that difference is noticeable to everyone (maybe even to him).

But more and more kids with special needs are finding themselves in typical classroom, and, no surprise, a lot of this comes down to economics. It costs far less to have a kid in a mainstream classroom, with maybe a couple of hours a week with various therapists, than it does for him to be in a special-needs classroom 100% of the time with a full-time teacher and likely a number of assistants. And cash-strapped school districts are cutting back in every way they can.

While it's heartbreaking thinking that your kid faces a lifetime of being apart, it may simply be reality. My son is different from other kids, and nothing save excising his extra chromosome is going to make that go away, and as sad as it is to accept a lifetime of difference, sometimes it's for the best.

Congresswoman's Baby Has Down Syndrome

Karen Murphy — Thu, 31 May 2007 23:35:00 GMT

Dear U.S. Rep. Cathy McMorris Rodgers,

I read recently that your new baby has been diagnosed with Down syndrome. Believe me, I can completely relate; my son Eric is now three and it wasn't long ago that I began the same journey of grief and acceptance that you are beginning. (This is him in the photo; isn't he beautiful?) I have a few words of advice for you.

First, don't listen to anyone else. That's right, not even me. Only you know best what's right for your child. There are plenty of "experts" out there who will be more than happy to tell you what your son Cole's life will look like. Don't believe them. Right now, his possibilities are endless. Know that, truly believe that, and they will be so.

Next, listen to anyone you can (you're saying "huh?" right about now, I can tell). There is an enormous amount of information out there. Learn to take it in small-enough doses so that you can sift through it intelligently. Join parenting support groups, online support groups. Acquaint yourself with the Down syndrome culture out there. Realize what wonderful, beautiful, amazing things that other kids with Down syndrome are doing and what their parents are doing to help them get there. I guarantee you'll be surprised. Look, too, at the number of adults with Down syndrome you suddenly see in surprising places. Try to see Cole's life through their eyes.

Third, this baby is here to teach you something. There is not a person with Down syndrome I have ever run across who doesn't seem to be on a mission of some sort, if only to spread love and joy or simply acceptance around them. Not a bad calling, if you ask me.

Lastly, allow yourself to really grieve for the child you didn't have. We all go through this, and it's okay. A dream died when you were told who Cole really is, and you should allow that death to settle. And then look into his beautiful eyes and really say hello to your tiny son. Then you can see him for who he is.

Hugs,

A mama who's been there

P.S. I forgot to mention: with your visibility and your political knowhow, maybe you could help make a difference for other kids with Down syndrome too.

Special-Needs Kids: In-Your-Face or Mainstreamin'?

Karen Murphy — Wed, 16 May 2007 15:35:00 GMT

I'm not yet sure what to think about this new book and website called "Shut Up About Your Perfect Kid!". It's billed as a humorous alternative to the "My Kid Is An Honor Student" bumpersticker mentality, but it just comes across as a lot of sour grapes to me.

I'm the mom of a kid with special needs, and while it may be that we've yet to experience some of the discrimination and rude comments that many kids with special needs and their parents seem to face, I wonder whether the best way to address this ignorance is to throw the rudeness back? I don't know, maybe I live in a big rainbow-colored Happy Bubble, but it seems to me that education, not a big in-your-face "Shut Up About Your Kid!" is what will really change people's misperceptions about kids with special needs and their, well, needs.

And, too, why the need to continually set these kids apart? Yes, it's good to acknowledge and honor their differences, but I think there's a fine line between acknowledging and shoving it in someone's face. I want my kid to be regarded as a person first and foremost, not as his special-needs label. I'm afraid that this "Shut Up" site is only creating a wider gap between the so-called "perfect" kids and the "imperfect" ones. "Perfect"?? None of my kids are perfect, and neither am I, but I don't go around wearing a label about it.

Can't they all just be "kids"? Wonderful, beautiful kids?

Study: Moms of Autistic Kids Bond More

Karen Murphy — Thu, 10 May 2007 15:07:00 GMT

Shattering what I perceive is a stereotype about autism, a recent study shows that moms of kids with autism bond more with them and have better coping skills than do moms of kids without autism. Wow! This is huge news! On the flip side, the same study shows that these moms also had a higher rate of stress and poorer mental health

As a mom myself of a child with special needs, I can completely understand what appears to be a conundrum here. There is a certain "rise-to-the-occasion" element that becomes necessary when parenting a kid with special needs. Often you have to act as spokesperson, translator, and advocate for this small person entursted to you who can't easily communicate with the world outside. This creates a hugely intense bond; often much of the communication is completely wordless.

In turn, there are also stresses placed on the parents of children with special needs that other parents for the most part don't experience to the same degree. There is more anticipation, more planning, more understanding, and often more patience required, all which create stress. Add to that the worry that looms for years about how this child will fare in the world when they're grown.

And then there is the biggest question of all: will the rest of the world see my child for himself, or for the label he wears? And for moms of kids with autism, who have long been regarded as difficult to bond with, this delicate balance is both beautifully and painfully evident.

Kids With Disabilities Find New Freedom on Bikes

Karen Murphy — Mon, 30 Apr 2007 14:34:00 GMT

A rite of passage for pretty much every kid these days is riding a bike for the first time. I remember my first bike, the one that wasn't a tricycle. It was a red Murray of which I was very proud despite the degrading training wheels. Later I graduated to a green Schwinn and applied a playing card to the spokes with a clothespin like every other kid in the neighborhood, making the telltale clack-clack-clack sound that accompanied us down the street. But some kids have a lot bigger challenge facing them to ride a bike than getting over training wheels.What do kids do who can't even walk or hold their heads up straight because they're challenged by something like cerebral palsy?

In Jacksonville, Florida, many kids who can't walk, sit up, or even talk are finding they can ride a bike. They're riding specially-adapted bikes provided by the local Children's Hospital in a program that gives parents (and kids) the chance to try out such bikes before making the huge (up to $3000) investment that often isn't covered by insurance. I'm thrilled there is such a program and I'm guessing that there are similar ones going nationwide. (Here's one program and here's a resource.)

Life Planning: Parents of Kids With Disabilities Must Plan for the Future

Karen Murphy — Sun, 22 Apr 2007 14:04:00 GMT

I know, I know. Planning ahead for your financial future is as much fun as stapling your thumbs to a table, but ya just gotta grit your teeth and do it. Like with flossing. Not that I've taken my own advice, mind you, but when you have children it ups the ante considerably, especially when you have a child with a disability, in which case things go into overdrive. But if this is you, you've got plenty of company: in addition to me, a total of 60% of us parents of kids with special needs haven't planned ahead, at least as of two years ago.

My youngest has Down syndrome, and although he's only three I've noticed that even though in general I think of parenting him in the same way I do my other children, at least one thing is different: I wonder more about his future. When you have a child with special needs you find yourself in a different world sometimes, and even though I can't possibly imagine my cherubic three-year-old as an adult yet, I see that suddenly I have found myself asking questions that I wouldn't necessarily ask concerning my other children, questions like, Where will he live? Will he or can he live independently? Can he work? Is his disability income going to be enough to provide for him? Do I need to set up a trust fund? How is it accessed, when and by whom? What happens when I'm (gasp) old? And what about my retirement? Can I still look forward to playing shuffleboard in Boca Raton? (oops, that's my grandparents' retirement; mine would be living in an artist's/writer's garret in Paris with my laptop and my iPod and seven cats.)

These questions and more can be answered by a financial planner, who will be glad to take a chunk of your money in return for some peace of mind about your child and their future. Although the planning service mentioned here is Chicago-specific, it's easy enough to find someone in your area, and a simple Google search will reveal them.

Go ahead, do this. And then please come back and report to me, because it's my turn next.

Special Needs Families Finding Strength in Numbers With Group Playdates

Karen Murphy — Tue, 17 Apr 2007 11:59:00 GMT

Redheaded Momma writes about her recent family playdate with other families of children with special needs at a local Y, and the entire family returns rejuvenated. As a mom of a child with special needs, I can relate. How nice to hang with families who get the lingo, who know the issues, while at the same time being in an environment where the last thing you talk about is therapy, or special-needs-specific acronyms like EI or IEP, while letting kids just be, well, kids.

The family playdate: what a huge concept! Special-needs or not, they're a wonderful idea. Though I actively resisted these labeled group activities for a long time after my son was born, I would totally welcome such an opportunity now. I think I'll start with local support groups and move from there. Playdate, anyone?

"Indigos," "Crystals" & Jenny McCarthy: Have You Heard About This?!?

Alisyn — Sun, 15 Apr 2007 15:31:00 GMT

I stumbled across a blurb about Jenny McCarthy and her autistic son, Evan, the other day. I discovered that Jenny identifies as an "Indigo adult," and considers her son a "Crystal child." You are probably wondering, as was I: what exactly does that mean? Upon further reading and research, I discovered a huge amount of online information about Indigos and Crystals, and the belief that "indigo/crystal phenomenon is the next step in our evolution as a human species."

Want to know more? Keep reading, but be warned: I'm about to drop some serious metaphysical shit on you. For real.

Following a link in the Jenny McCarthy blurb, I jumped over to IndigoMoms.com - "hosted" by Jenny - an online community forged to support and educate those who believe that they, and/or their kids, are Indigos or Crystals, which are defined as: awakened and enlightened Master Souls who carry with them Divine wisdom and Universal Truths. They are here as a soul group to share their gifts, insights, and vision, which help to energetically shift the Earth’s frequency, as well as, raise the consciousness of all of humanity. They are the Trailblazers, and Spiritual Warriors, who are here to breakdown and remove old paradigm systems and beliefs, which no longer serve the greater good. They are the reminders of who we are and from where we came."

These "master souls" are broken down into two groups: Indigos and Crystals. Indigos have a "warrior spirit" - they are extremely bright, hypersensitive children with amazing memories who live instinctively, and often start out as colicky babies. These kids are often diagnosed as having ADD or ADHD, are non-conforming, "energy-tapping," and highly-intelligent kids who have trouble with authority figures. Crystal children are their opposite, characterized as being dreamy, detatched and loving, with magnetic, peaceful personalities. They are born with a strong desire to help others, and may have healing powers. They are highly sensitive, and often have clothing and food aversions, including allergies. They are often austistic, O.C.D., and clairvoyant. (More on characteristics here).

Are you questioning whether your child is one of the Enlightened? You will be able to tell if your child is one by determining the color of their aura (Indigos have, well, bluish/purple auras, while Crystals' are opalescent - crystalline.) The best way for the untrained eye to determine the aura's color? Pose the subject against a white wall, while wearing a white t-shirt, and take a flash photograph.

I am not making this shit up.

Really, I'm not. In fact, for full disclosure, I must admit that I only know this much about this phenomenon because when I visited IndigoMoms.com and read the list of Indigo characteristics, I was struck by the fact that the list described my daughter. It could have been written about her specifically. So I kept reading. I was surprised to find out there are books, therapy groups, mommy & me activities, even schools, dedicated to "nurturing" these "souls" and their families, while they do their work here on Earth. There is a movement afoot, to bring these superhumans, and their "quest," into mainstream society.

So as I read on and on, I got to thinking about how powerful a parent's need to see their child as "gifted" or "special" can be. We all want to think that to a certain extent, right? I thought about how what a parent had previously believed to be difficulties or special needs of their child, could be seen as "powers" or "enlightened actions," when viewed from a slightly different angle. That belief, in itself, could be a hugely powerful tool for a child, and for a parent - I mean, how liberating would it be to see a "problem child" as a universal problem solver instead? It could be incredibly empowering for a child to see his or her "difficulties" reflected back to them as sacred gifts, instead of obstacles. But would they grow up to be in touch with the universe - or out of touch with reality? Could it be potentially damaging to tell an unusually sensitive child that it is their duty to save the world from itself? Because they do not cover that in the public school system. At least, not that I'm aware of.

So now, I'm wondering... how much of the Indigo/Crystal child philosophy is based in actual study - and how objective are the observations that lead people to classify themselves/their kids as Indigo/Crystal? Can something like this even be studied objectively, and rationally? Is there really a "new generation" of children here on Earth, to lead humanity through the gateway of the universe, or is this whole movement rooted in a desperate attempt to make sense of the difficulties of modern life? And what is up with Jenny McCarthy? At the forefront of the "movement?" Jenny McCarthy??? What the fuuuhhhhhhh......?

Although I am skeptical, I must admit - I am intrigued by this whole concept. What do you think - is this a bunch mystical malarkey, or a legitimate phenomenon? Do you, or anyone you know, identify as an Indigo or a Crystal person? Believers and non-believers alike, lay it on me.

Disabled Boy Turned Down for Daycare

Karen Murphy — Mon, 09 Apr 2007 11:31:00 GMT

Discrimination in daycare: an Austin boy has been repeatedly turned down by provider after provider for daycare because of his disability. Dustyn Henson is eleven and is in a wheelchair due to his cerebral palsy. The daycare providers who have turned him down, however, claim that the wheelchair isn't the problem. No, it's his pants. Dustyn can manage pretty much everything himself during the course of his day but can't undo and redo the fastening on his pants when it's time to use the bathroom. Daycare providers have therefore denied him service, claiming that child protection laws prevent them from helping Dustyn with his pants.

Say what? A daycare provider practically potty-trained my older daughter; are you telling me that they never touched her pants to do so?

It sounds to me that the daycare providers in question are skipping out on their burden to be accommodating to children with special needs. There could be more to this story of course, but it appears that Dustyn's family is making very few demands in terms of accommodation. We're talking about doing a button on the boy's pants here! Not, say, intubating him or providing therapy or any number of other special-needs accommodation-type requests. Dustyn's mom, Niki, has appealed their case to the state of Texas, and I'm hoping some workable resolution can be found for this family. Until then, Niki will have difficulty being able to work without care for her son.

One Mom, One Child: The Gift of Down Syndrome

Karen Murphy — Wed, 04 Apr 2007 18:05:00 GMT

As the mother of a child with Down syndrome, I cannot help but be thrilled when I read articles like Abigail Braithwaite's heartfelt essay about life with her daughter with Down syndrome in yesterday's Washington Post. Her experiences with her nine-month-old daughter Adara seem to mirror my own with my son at that age in so many ways, and her frankness about her life with this tiny, charming girl is refreshing. In order to truly educate people on what it's like raising a child with special needs, it's important to tell the whole story: the tears of frustration over things you cannot control, the myriad ways you have to develop of doing things differently just to help your child survive, the grief for the child you thought you were going to have, and finally the acceptance and realization of just who it is that's come to live with you and give to you their extraordinary gifts.

Abigail's essay will likely help bring about new perspectives to people about what it's like to raise or be a person with Down syndrome. For her, it's summed up this way: "I have long said I am one of the luckiest people I know. This belief has been shaken a couple of times in the past months, but I will stand by those words today. Life is a wild journey; our job is to make the most of it."

I'll add to it: I cannot imagine my life without my son Eric, now that he is here. My life and my perspective about so very many things have changed immensely because of him, and I can't wait to see him continue to bring his gifts to me, my family, and to everyone he meets.

LinkLove: The Mother At the Swings

Karen Murphy — Wed, 31 Jan 2007 14:07:00 GMT

Writer Vicki Forman has a new column up at Literary Mama about her experiences raising a son with multiple special needs. Her take on the vast differences between parenting a "normal" child and one with special needs is poignantly expressed in her essay The Mother at the Swings. It turns out? We aren't so very different, but we need a common language to help bridge the gap, and there is none.

I've mentioned here before that my youngest son has Down syndrome. After being a "regular" mother for sixteen years, I was suddenly thrown into this very weird world where nothing is the same and yet everything is the same. Those of you who have crossed into this world can understand this, and the rest of you? Read Vicki Forman's column for a glimpse. Then maybe we can all have a wonderful chat over the swings (and maybe also a nice glass of wine, but that's another story entirely).

Strike Three for Diversity" New Prenatal Testing Guidelines Require Down Syndrome Screening

Karen Murphy — Wed, 03 Jan 2007 12:01:00 GMT

The American College of Obstetricians and Gynecologists has recently issued a new guideline suggesting that every mom-to-be, regardless of her age, undergo a screening test for Down syndrome. As the mother of a 3-year old who happens to also have Down syndrome, this new guideline is of particular interest to me.

The previous guideline recommended prenatal testing at or above age 35, but the age delineation has been dropped because the medical community finally got wise to what moms and dads have known all along, that there is no magic jump in the incidence of babies born with Down syndrome at the maternal age of 35. Indeed, though there is a gradual statistical increase in risk -- from one in 1,200 at age 25 to about one in 300 at age 35 -- women under 35 actually give birth to most of the babies born with Down syndrome.

The newest testing method is a first-trimester screening that combines blood tests with an ultrasound exam, called a "nuchal translucency test", that measures the thickness of the back of the fetal neck. The test is performed between 11 and 13 weeks gestation, and is considered "more than 80% accurate". Although this is all well and good, and may well avoid some unnecessary amniocenteses and therefore the fetal risk associated with that more invasive test, I have to wonder -- what exactly are people going to do with this new information?

I had no prenatal testing with my son. If I had done so and the test correctly suggested that my son would have had Down syndrome, I would have immediately been bombarded with pressure from all over to "do something" about the baby, to "make a decision". Hello? What, exactly, is there to do? A baby is a baby. Where do you draw the line? Babies with Down syndrome are "okay", but babies with, say, more serious issues, or expensive-to-treat medical issues, are not? Or, a baby with Down syndrome would be okay, but only if he is "high-functioning". Right?

For perhaps the first time ever I can say I side with a Catholic group who states, "...it could lead to women seeing that because their child has a genetic defect that they would seek an abortion". Since when did eugenics creep so stealthily into our accepted medical midst? What happened to "inclusion" and "diversity"? Is this, really, where we as a society wish to head? Take another look at that baby up there and then tell me.

LinkLove: Navigating the Holidays With Special Needs Kids

Patti — Sun, 24 Dec 2006 00:21:00 GMT

I've been loving this blog for years and am stoked to have such a great excuse to share it with y'all: Leelo and His Potty-mouthed Mom's tips for surviving the holidays with an autistic child. And truly, these are great things to keep in mind even if your children don't have special needs; kids of all stripes get overstimulated by the noise, the sugar, the strangers, the travel. Take it to heart.