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Terri's Special Children Blog

Friday Free-for-All: Sound Off on ERs, Equipment, Everything on Your Mind

Friday January 16, 2009

The opportunities for spouting off on this site have grown over the years from the forum to blog comments to article add-ons. I'm going to take Fridays to highlight a few contributions each week to try and get everybody in on the conversation.

My post on emergency-room wait times brought an interesting response on a program that makes a lot of sense. Wrote Quicksilver:

When we used to live in Australia, they had a wonderful service I wish more ER departments had. There was a health "help line" staffed by triage nurses, with a doctor on call. You phoned in, and described the symptoms the person was experiencing. They would assess you over the phone, and give you a recommendation of what to do -- and if their call was that you needed to go to the ER, your time in the waiting queue started from then, not from when you walked in the door. ... This service made dealing with accident prone kids, or those likely to spike a +100 fever at the drop of a hat, a lot more calm and collected -- and hopefully saved a lot of other people waiting time in the ER, because some of us who didn’t need to be there, weren’t!
I'd love to have a service like that available near me, and to extend it to pediatricians' offices. Have you observed good ER practices, or bad ones? Share them in the comments of that post.

School services for children with limited movement are on the mind of a forum member who's trying to plan ahead for her daughter's move to preschool. Writes Jamie:

She has a mosaic partial deletion of the 13th chromosome. At this point, she is very small for her age, she can army crawl, but no walking yet. She has AFO's (leg braces) so she can bear weight on her legs, but only if she holds onto someone or something. ... If she isn't walking by the time school rolls around, what is the best equipment to have? She will eventually walk, but I don't know exactly when. She will be able to be bussed to school, if she can't walk, should I suggest a type of wheelchair just for the bus? Would a walker/gait trainer work better so she can practice walking? I know they have strollers for special needs, do they accept them in school and on the bus? ... I know the therapists will have some suggestions, but I was wondering if anyone else has some personal experience that can offer some suggestions for what worked best for them.
Have you done this sort of planning for your child? Stop by the forum and share your experience.

A helpful parent was kind enough to send me a PDF of a contact log page this week, for posting with my article on contact logs. If you need a list to record all those conversations with doctors and educators, about children's illnesses and school equipment and all the other things we have to nag professionals about, download her form and make a bunch of copies to keep by the phone. It's still January -- make it a New Year's resolution to be more diligent in keeping track of the details.

What else is on your mind today? It's Friday, and time's for wasting. Ramble a little in the comments.

Read more: Special Needs News | Site of the Day | Top Articles of 2008

Photo by Stephen Dunn/Getty Images

Abracadabra! No More Special Needs!

Thursday January 15, 2009

There have been times, in my children's schooling, where I've felt educators were operating under the "Magic Wand Theory" -- that is, a given placement or plan will work because a magic wand will sweep away all the child's learning and behavioral problems. Poof! Success! Just like that! Would that it worked that way. What's really required is parents and teachers working together to modify and accommodate and support and prepare a setting in which a child can shine despite very real challenges that do not go away like a rabbit into a hat.

So every time I hear some know-it-all declaring in public that some disability or other is only an illusion, a sleight-of-hand by lazy parents or incompetent educators, it makes me want to call them up and say, "Hey! You found that magic wand! Awesome! Can I have it now?"

This week's wand wavers are Joel Stein, a Los Angeles Times columnist who called nut allergies "a Yuppie invention," and Graham Stringer, a member of the British parliament who, according to a Telegraph.co.uk report, claims that dyslexia is a "cruel fiction."

Anybody care to invite either of these gentlemen by the house to see if he can make your child's problems disappear? Maybe they do other parlor tricks, like pulling quarters from behind your ear. You won't need that extra change anymore for therapy and specialists and tutors and medications and stuff, but peanut-butter sandwiches in the cafeteria aren't free, you know?

Stein is playing off a Harvard professor's observation that the rise in peanut allergies bears the hallmarks of mass hysteria, and notes that "peanut allergies are only an issue in rich, lefty communities." He declares, rather like Denis Leary did of autism, "Your kid doesn't have an allergy to nuts. Your kid has a parent who needs to feel special," and advises that:

Parents may think they are doing their kids a favor by testing them and being hyper-vigilant about monitoring what they eat, but it's not cool to freak kids out. Only 20 percent of kids who get a positive allergy test result need treatment. And a 2003 study showed that kids who were told they were allergic to peanuts had more anxiety and felt more physically restricted than if they had diabetes.
How do you tell that your child is one of the worry-worthy 20 percent, I wonder? Wait for a near-death experience? I'm sure that wouldn't cause any anxiety at all. Stein does admit that "Yes, a tiny number of kids have severe peanut allergies that cause anaphylactic shock, and all their teachers should be warned, handed EpiPens and given a really expensive gift at Christmas." Also that "Opinion columnists believe in saying something outrageous to get attention," which seems to be the point of the piece.

The point of Stringer's assault on dyslexia seems to be that he has some other scheme for teaching reading that everybody should try. I guess we ought to be glad that at least he's blaming teachers for making dyslexia up instead of parents:

The reason that so many children fail to read and write is because the wrong teaching methods are used. The education establishment, rather than admit that their eclectic and incomplete methods for instruction are at fault, have invented a brain disorder called dyslexia. To label children as dyslexic because they're confused by poor teaching methods is wicked.
Certainly, we've all seen that particular teaching methods work less well on some kids than others. But there's also been pretty direct testimony from people with dyslexia that they actually do see things differently. It should be possible to enthuse about a teaching method because it helps kids with a particular disability, not because the disability is a lie. But Stringer sees something sinister in that alleged diagnosis: "Certified dyslexics get longer in exams. There has been created a situation where there are financial and educational incentives to being bad at spelling and reading."

Interestingly, both men present as their decisive proof of fraud the fact that the problem in question doesn't exist in other countries. Stein quotes the professor as saying, "We don't see [peanut allergies] in Ecuador and Guatamala," while Stringer observes that "If dyslexia really existed then countries as diverse as Nicaragua and South Korea would not have been able to achieve literacy rates of nearly 100 per cent." Those are some pretty random nation names, aren't they? Was some poor intern charged with Googling the allergy and dyslexia rates of every country on earth to find ones that fit? I wonder whether those countries also have a lower percentage of opinion columnists and blustery politicians. Ah, no, they're probably everywhere.

I'll be willing to go along with these guys' suppositions if they'll do me one favor: Send me that magic wand. Get it here before standardized testing starts, because my son, who's being taught a couple of years behind grade level, is going to be expected to pass a grade-level exam. Just like that -- voila! -- he's to have acquired years of knowledge. That's a pretty cool trick, but the state never seems to send a magician to proctor the exam. Maybe, with just a wave of the wand and some special words, I can make cognitive impairments disappear. Barring that, you suppose I could just vanish loudmouth know-it-alls?

What's New: Special Needs News | Site of the Day | Special-Education Transitions: High School To Adulthood

Photo by Thomas Northcut/Getty Images

Another Chance to Vote for a Special-Needs Cause

Wednesday January 14, 2009

Remember that whole to-do last year about the American Express Member's Project, in which many parents of children with special needs fervently voted to fund their causes, only to find out that the finalists were being determined by judges, not just votes?

Well, we've got another chance now to make some noise. Change.org has been running a vote-off to determine ten "ideas for change." In this case, the goal is not winning a big check, but getting some big attention. According to the site, "On January 16, Change.org and the Case Foundation are co-hosting an event at the National Press Club in Washington, DC to announce the top 10 rated ideas and then launch a national campaign behind each idea and mobilize the collective energy of the millions of members of Change.org, MySpace, and partner organizations to ensure that each winning idea gets the full consideration of the Obama Administration and Members of Congress."

It's not exactly a couple mil for research, but it would be nice for a special-needs-related cause to get that kind of push behind it. And conveniently, there's one among the finalists, at #15 as I write this: "Fully Fund Medicaid Waivers for the Developmentally Disabled." As the idea is described on its Change.org page:

Funding health care and services for individuals with developmental disabilities, disabilities and the elderly creates jobs, careers, business opportunities while filling a critical need.

I propose that the federal government:

1. Fully fund the Medicaid Waiver Program as part of the next Economic Stimulus Package.
2. Consider this as an increased federal match so that states are not put into an impossible situation.
3. Create portability of services across states and counties as is allowed with Medicare and Social Security.

Facts:

* Across America, an estimated 300,000 people cannot obtain essential support to live and work in the community because of lack of funding.

* Institutional care costs $88-$225,000 per person per year depending on the level of care. Community-based care costs $20-$75,000 per year (varies by state and level of care).

* Waivers are not portable. Families cannot move out of state or even out of their current county in some places for military duty, to accept jobs, or to live closer to family because they must go to the bottom of decades-long waiting lists at their new location.
The page goes on to share specific benefits that the waiver funding will bring, as well as comments from many special-needs families about how badly the help is needed. Read it over, check the competing ideas, then consider giving this important issue your vote. The special-needs causes overlooked by American Express earned a combined total of 19,228, well over the number needed to put Medicaid waivers in the Top 10. There's no mention anywhere of judges making the final cut, so our votes should actually count this time.

You'll need to give your name and e-mail address to establish an account before you can add your voice to the cause, but do be sure to vote according to the instructions on the page and not just comment (though, certainly, comment too.) The deadline is tomorrow, January 15.

It would be nice to win one every now and then, wouldn't it?

What's New: Special Needs News | Site of the Day | Book Review: I Before E (Except After C)

Graphic from Change.org

Some "Wife Swaps" I'd Like to See

Tuesday January 13, 2009

Speaking of television shows, anybody out there watching the ABC show Wife Swap? Anybody who'll admit to it? My daughter, for some reason, finds it fascinating -- maybe because it makes lifestyle differences so very black and white, and she's not a kid who appreciates nuance. I'm not sure it's such savory viewing, but she's 18, and it's more age-appropriate than her Disney Channel favorites, so I let it go. And, in a train-wreck sort of way, can't avoid watching some myself.

If you've never seen the show -- and good for you! -- the concept is really less of a "wife swap," which implies impropriety, than a "mom swap." Two moms with radically different approaches to parenting and running a household and respecting their mate and basic hygiene skills switch homes and lives for two weeks. The first week, the transplanted wife has to follow the rules of her new family. The second week, she gets to set the rules. Disruptions, snit fits, enlightenment, and Life Lessons ensue. Or, you know, not.

Since the contrasts are always stark -- neat freak trading with slob, homeschooler trading with school teacher, atheist trading with evangelical, shopaholic trading with someone who hasn't had a wardrobe change in 20 years -- the first question that always comes to my mind is, "Why would anybody ever sign up for this?" And the second is, "If they did this with my family, which side would I be on? Would I be the organized and generally well-adjusted person trading with the nutjob? Or would I have the house that the other mother would pick through, saying with the audience, 'What on earth is wrong with this woman?' Would my family fight for our way of doing things, or would my husband and children be among those who say, 'You know, this new mom has some good ideas. What was that other lady's name again?'"

There are days when I feel strongly that the audience would be rooting for me. And there are days when I'm glad I'll never have to find out. One thing I do know is that I have no desire to trade lives with anyone. My family drives me crazy sometimes, but I wouldn't want to try again with someone else, nor would I want them to have the opportunity to try on an alternative. Neither do I feel I have so many answers that I must spread my parenting wisdom by planting myself in other people's households and setting their world right. Goodness, no.

Still, since some people do feel up for that challenge, it would be interesting to see what would happen with a special-needs spin on the concept. How about swapping a mom who believes vaccines cause autism with a mom who believes autism is a difference to be celebrated? I've read enough e-mail debates about what kind of special-needs are the hardest -- swap moms whose children have radically different sorts of special-needs issues and let them walk in those shoes. Given the currency of prenatal testing in the news, swap a mom who chose not to give birth to a child with Down syndrome with a mom who did. I'd suggest a swap between a mom who's protested peanut bans in school with a mom whose child has a peanut allergy, but a kid shouldn't have to go into anaphylactic shock for a TV show, even if it would make a point.

You could also, I suppose, swap some know-it-all who's sure all these special needs are made up with the mom of children with a variety of neurological and developmental and behavioral challenges, but you might have trouble getting that special-needs parent to switch back in just two weeks. Oh, yeah, we love our kids, but ... just one more week? a double episode? a sweeps special? Respite is where you find it.

Who would you like to see swap for some special-needs awareness? Make your pitch in the comments.

Read More: Special Needs News | Site of the Day | Entertainment News

Photo by Frederick M. Brown/Getty Images

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