Oh, I wish I were like Ruby…

Ruby from the “Max & Ruby” show that is. For those who’ve never seen the show, which is based on the books written by Rosemary Wells, and made by Canadian Nelvana (shown on Noggin and Nickelodeon channel) – Max and Ruby are (bunny) siblings, Max is supposed to be about three years old, and Ruby, his older sister, is seven.

Max & Ruby live in a cute little cottage, but weirdly enough, all by themselves (which made my son somewhat concerned at one point and he wanted to know what happened to their parents). Max is a typical three-year-old boy (I mean, bunny) and likes to get into mischief. Every time he does something naughty, Ruby, in her signature sing-songy voice says “Ma-ax!” and then very patiently explains to him that he should stop his mischief and do something else instead. It is hard to explain her tone of voice, so if you’ve never seen the show, just watch the second episode on http://crackle.com/c/Short_Films/Max_and_Ruby/1936369. (fast forward to 8:00).

Watch it carefully… When Max brings a noisy toy to the room the first time, all she tells him is “You need a quiet toy to play with” and redirects him to a puzzle (9:07). Then, when Max brings another noisy toy to the room while she’s on the phone with a friend and is dying to learn a secret her friend promised to tell her, again, even then, all she says is “Max! I can’t hear Louise’s secret. Loud toys go outside. Come on. Let’s go.” without a shade of anger in her voice. (10:33) Similar scene repeats two times, as Max flies a toy a helicopter into the room (11:52) and sends in a toy talking parrot (13:20). Despite all that, Ruby never loses her cool and yells at Max. I am full of admiration for her. I don’t know how she does it… (other than being a cartoon bunny, that is)

NTs or the Neurotypical

In her comment to my post “Why are white lies considered ‘politeness’?”, Debra mentions “the NT world.”

Responding to her comment, I wrote in the post scriptum “I doubt that anyone visiting my site would not know what NT, mentioned by Debra, means — but just in case — NT is short for ‘neurotypical’ or, as most people who don’t know any better would probably say — ‘normal.’”

Then I remembered seeing on the Attention Deficit Hyperactivity Disorder Forums a question about what NT means and wondered whether, even though within the “autistic” community pretty much everyone knows what the acronym stands for, others are not as familiar with this term.

The NTs who have a good sense of humor and are not easily offended might find amusing the “Institute for the Study of the Neurologically Typical” site, especially the page listing the “diagnostic criteria for 301.666 Normal Personality Disorder.”

That site reminds me of a joke Stephen Shore made during the presentation I saw nearly a year ago (see the entry  “Understanding Autism (for Dummies, by Stephen Shore)” from April 10, 2008) – that his next book will be titled “Understanding Neurotypicals for Dummies.” He even had a slide of a mock book cover with the bullet points saying things like “learn to decode nonspectrum behavior”; “educate children on radical acceptance of differences” (I’m not sure what he meant here, I’m afraid); “successfully communicate without eye contact.”

As I’m still learning and sometimes have trouble navigating American social customs, I could relate to the joke.

Along the similar lines, but much more philosophical is the blog NTs Are Weird written by an adult male who’s autistic.

NTs Are Weird is full of “opinion” entries, as well as plenty of passionate advocacy and “issues” posts. It also includes quite a bit of personal (sometimes very personal) reflections. Overall I found it a fascinating read, and quite philosophical too.

Reading it made me wonder if my son will think and feel like that when he grows up, and I had a bit eerie feeling of reading letters from the future. But it also gave me a desperately sought glimpse into what the world looks like to an autistic adult.

I remember having a somewhat similar feeling when I read posts of adult ADHDers on the Attention Deficit Hyperactivity Disorder Forums but also remembered how much some of them disagreed with the way the parents on the forum thought the ADHD kids should be handled.

I wonder what the author of NTs Are Weird and other adults with autism think of the parents’ posts and blogs and how much they hate the parents for saying how stressed or upset they are sometimes by their kids’ behavior. I frequently wonder myself how much my son would hate me, if he knew what I wrote about him (especially in the first post).

Yet, we don’t really hate our children, and at least in my case I actually don’t wish my son were a typical child. He’s very interesting the way he is. I just wish I knew how to deal with some of his “moments” and how to keep “cool” at those times. That is still hard.

I do hope my son will be able to express himself in the future as well as the author of NTs Are Weird. He’s not much of a talker, he doesn’t like handwriting, and doesn’t know how to type (yet, I’ll make sure he learns). So I don’t really know what’s going on in this 2e head of his.

Going back to NTs Are Weird, I got very intrigued by the post “Disability Awareness Day” (Sepember 28th, 2008)  and was somewhat surprised by the negative responses to the idea #2, because I like this idea the most. I would add the following exercise to the list — go into a room with strobe lights flashing, music blaring and several TVs turned on, each to a different channel. Have a teacher read a story and then quiz the students on how much they remember from the story and if they do not remember much, have the teacher complain that they should have “tried harder” to concentrate on the story.

I’m also curious though why the author of the NTs Are Weird thinks “ABA is unethical” (“Negative Definitions,” January 10th, 2009) I did not read the entire NTs Are Weird but I did use the search engine and could not find more posts about that. ABA seems to be like a religious doctrine in “correcting” the behaviors of children with autism – everyone seems to be expected to do it and believe in its efficacy.

Citizen’s Briefing Book at change.gov

I think this is fairly new — it was published on President-Elect’s Blog today at 12:47 pm EST — The incoming president and his administration are inviting ideas and submissions to the Citizen’s Briefing Book.

The site promises “The best rated ideas will rise to the top — and be gathered into a Citizen’s Briefing Book to be delivered to President Obama after he is sworn in.”

When I searched the ideas already posted, there wasn’t much on special or gifted education (or autism, or ADHD for that matter), so I added the following (see below). Feel free to vote on these, or add your own ideas.

Whether you like my ideas or not, it doesn’t matter, everyone is entitled to their own opinion, but please forward the information about the Citizen’s Briefing Book to everyone you think might be interested.

* * *
Revamp the Javits Gifted and Talented Students Education Program

Please revamp the federal Javits Gifted and Talented Students Education Program so that it benefits not only a small group of students whose schools were lucky enough to get the grant but all gifted students in the whole country. One of the ways to do that would be to create a FEDERAL mandate to identify and serve gifted students similar to the IDEA mandate to identify students that need special services and encourage districts to form cooperative magnet schools or classrooms.

Some people say that gifted children do not need help, they will do fine on their own, but some those children might have the brains to help solve the global warming or find a cure for cancer, IF they allowed and encouraged to progress through the curriculum at the speed they can handle. Making them slow down to the pace of everyone else is killing their enthusiasm for learning and wastes America’s potential.

* * *
Beging a discussion about fair public school funding

As long as the quality of education a child gets depends on the income of that child’s parents and their ability to buy a house in the best school district or send a child to a private school there will be NO EQUAL OPPORTUNITY for children in this country.

Please begin a discussion about fair and nondiscriminatory distribution of public school funding to decrease the inequality between schools in rich neighborhoods that have beautiful labs and well-stocked libraries, and those in poor neighborhoods where there isn’t even enough money to repaint the walls over the summer.

* * *
Fulfill the promise of the federal IDEA (Individuals with Disabilities Education Act) funding

Please make sure the federal government lives up to its promise of funding 40% of the IDEA costs.

* * *
Ban artificial coloring and chemicals in foods

Please make the FDA ban artificial coloring, flavoring, and chemicals in foods and medications, especially in foods that children like (snacks, candy, etc.). Artificial coloring have been found to be harmful by researchers in Europe and companies such as Nestle and Kellog’s are removing these chemicals from the products they sell in Europe but not in the U.S. because here they are not required to do that. Our children deserve no worse than European children and should not have to eat that crap.

(see also the “Citizen’s Briefing Book update” from January 19, 2009)

Why are white lies considered “politeness”?

I’ve lived in this country for nearly twenty years but I still can’t figure out why Americans consider as polite inserting little white lies pretending they care into conversations with people they really don’t give a damn about.

I’m talking about saying things like “We really have to keep in touch” to a coworker moving to another job you’ll be happy never to see again or adding “Maybe some other time” when you decline an invitation to an outing simply because you don’t like that person.

The February 2009 issue of hugely popular Parents magazine  includes an article “Your Complete Guide to Playdates” by Mary Jo DiLonardo which includes a “Q&A” Playdating Dilemmas. One of the questions was:

“That kid was a brat, and I don’t want him to come back. What should I do?”

The suggested answer? You guessed it:

“Our schedule is crazy at the moment. Can we touch base at a later date?”

with a comment

“If you say that enough, all but the most socially inept person will get the message.”

What really surprised me is that these answers were provided by Melissa Leonard, a certified etiquette consultant in Harrison, New York.

It just so happens that one of my son’s classmates asked to come over to our house for a playdate, so I contacted his parents to arrange that. The answer I got was “We are fully booked for both Saturday and Sunday. Maybe we can find another day in the future.”

Mind you, she didn’t say “Gosh, I’m sorry. We can’t do it this weekend. How about in two (three) weeks?” or something along those lines showing she does want to arrange a playdate in the future. So… In the context of Melissa’s advice I should take that answer as “No way I’m sending my kid to play with yours,” and that really sickens me.

What in the world compels Americans to pretend they are friendly if they really don’t care?

Honestly.. If you cannot stomach telling me “I’m sorry, but I think your child’s exuberance just is just too much for my son and hypers him up” then all right, do say “We are fully booked.” I’m okay with that. But do not add “Maybe we can find another day in the future,” when you don’t mean it. It might be the accepted convention, but to me that is not only disingenuous and insincere but just plan insulting. And disgusting.

What am I supposed to answer to that? “Whatever” would of course be my first reaction, but that would be rude. I could also answer along the lines of that  style and write back “I’m sorry to hear you are busy. I hope we can try some other time.” And leave it at that. But frankly, I don’t really feel like answering at all. And I don’t care what that mother or Melissa Leonard think about me. I refuse to play that game.

I’m just sorry for my son and that kid, because he really sounded like he wanted to come over to our house for a playdate.

Labeling kids

Way back in December a Washington Post article “Montgomery Erasing Gifted Label” caught my eye and I’ve been planning to write about that.  (“Montgomery Erasing Gifted Label: Implications Concern Some School Parents” by Daniel de Vise, December 16, 2008)

Of course this is old news by now, and covered widely by various blogs, including, naturally, the Gifted Exchange blog, which asks “Does the ‘Gifted’ label matter?” .

I like Laura Vanderkam’s point that although “what matters is that kids’ needs are met,” yet “when districts do label kids, then that at least creates pressure to do something for those with the label.”

That’s certainly true on the other side of the scale, and as I and many of my friends with kids on IEPs know, even the label doesn’t guarantee that kids’ needs are met.

The Washington Post article reports that

“Officials plan to abandon a decades-old policy that sorts second-grade students, like Dr. Seuss’s Sneetches, into those who are gifted (the Star-Belly sort) and those who are not. […] Montgomery education leaders have decided that the practice is arbitrary and unfair.”

Don’t even get me started on fair… As long as the quality of education a child gets depends on the income of that child’s parents and their ability to buy a house in the best school district, there is no “fair” in American education.

Gifted programs at least promise to give a chance for better education to smart kids from families who are not rich. Whether they deliver on that or not, that’s another matter.

Another reason given for scrapping the label is that

“the approach [sorting kids into gifted and not gifted] slights the rest of the students who are not so labeled. White and Asian American students are twice as likely as blacks and Hispanics to be identified as gifted.”

Interestingly, the officials do admit that “the practice is arbitrary” and their “formula for giftedness is flawed.” Well, then they should look at their identification and eligibility methods and revamp them!

Oh and apparently “A school that tells some students they have gifts risks dashing the academic dreams of everyone else.”

What about the gifted kids’ academic dreams? Why aren’t they allowed to dream of being challenged?

A lot of these kids are very excited to go to Kindergarten because they love learning and think it’s going to be so much fun learning new stuff all the time.

But then, even if they know how to add fractions, they get stuck recognizing patterns for a year or two (you know – circle, circle, square, circle, … what goes next?) And even if they can read chapter books, they are lucky if their “advanced reading group” reads four- to six-page books and when they skip forward while their classmates slowly decode the words on the page, the teacher frowns upon them.

No wonder a lot of these kids have pretty much lost their enthusiasm for learning by third grade and think the school is boring.

But, no need to worry — apparently “losing the label won’t change gifted instruction, because it is open to all students.”

I don’t get it. If gifted instruction is open to all students, then how does it differ from regular instruction? Gifted education is not what the kids are being taught, it is how they are being taught.

The thing about scrapping the label is that even though “educators have become more nimble in deciding who needs accelerated instruction” it doesn’t mean they are actually going to provide accelerated instruction. The fact that “teachers codify children’s math and reading levels with frequency and precision unknown in previous decades” doesn’t really mean anything.

Sure, at my son’s school they can “codify” that his math and reading levels are above grade. So what? There’s no gifted mandate in Massachusetts, so they don’t have to do anything about it. The only thing they care about is that he meets the curriculum requirements, which he does.

I have no doubt that “Principals and teachers say they don’t miss” the gifted identification program. It’s probably easier that way. No more fighting with parents over whether little Johny III will get into the program or not. No more proving to parents that they differentiate.

And as far as the gifted label setting “up a kind of have and have-not atmosphere at your school”… Looking at it from the SPED point of view, are then the kids with IEPs “don’t-even-dream-about-it-have-nots”?Or would the school like to scrap that label too to not make the SPED kids feel bad?

Incidentally, just as some parents fight to get their child labeled “gifted,” some parents don’t want their child labeled “SPED” and will not request or even deny testing. As a result a child is not getting the services she or he needs… But that’s a topic for an entirely different post.

Parenting Special Needs Children and Work

Boston Globe ran recently a two-article series by Maggie Jackson about working parents who have children with special needs. The first article, “A parental juggling job: Workplace stigmas add to struggles of people with disabled children” was published on December 14, 2008. The follow-up, “Bosses responding to special needs”, appeared on December 28, 2008.

Jackson writes

“nearly 14 percent of kids up to age 17, or about 10.2 million children, have special healthcare needs, which is defined as a chronic problem that limits activities or demands extra healthcare, according to 2006 government data”

[...]

“In any given company nationwide, 8.6 percent of employees care for such children, according to Massachusetts General Hospital’s Center for Child and Adolescent Health Policy.”

According to the publication of the Massachusetts General Hospital’s Center for Child and Adolescent Health Policy titled “Children with Special Needs and the Workplace: A Guide for Employers”:

“As a result of managing family responsibilities, parents of children with special needs bring talents and skills to the workplace including:

  • Determination
  • Resiliency
  • Advocacy
  • Negotiation
  • Multi-tasking
  • Prioritizing” (page 3)

The Guide also cites a 2002 National Study of the Changing Workforce conducted by the Families and Work Institute according to which:

“Employees with access to supportive work-life policies and practices are more:

  • Satisfied with their jobs
  • Committed and loyal to their employers
  • Willing to work hard to help their employers succeed
  • Likely to stay with their employers” (page 4 of the guide)

By the way, when I googled the title of the guide, I also found a very nice one-page brochure from the Boston College Sloan Work and Family Research Network, with links to an overview and briefs, statistics, and readings on  “Parents Caring for Children with Disabilities.” I need some time to go through all the info, but at first glance it looks very interesting and has a lot of useful info.

Jackson’s article mentions Ernst & Young and Raytheon as two companies that have a network of parents who have children with special needs.

The place where I work, a huge employer of over 15, 000, who has been on the 100 Best Companies compiled by the Working Mother Magazine doesn’t have such a group yet. I’m trying to create it but it’s a slow going. I do hope I succeed in the end.

In the meantime, I’m trying to find more information on other employers that might have networking groups like that. I would appreciate any leads.

Mad Scientist for a Child

At the suggestion of an excellent librarian working in the children’s section at our local library my son has been reading the Franny K. Stein Mad Scientist series, by Jim Benton.

He generally reads to himself but asked me to read to him a bit at bedtime so I did. When we came across the following paragraph in the Attack of the 50-Ft. Cupid

Franny’s mom … might not have chosen to have a mad scientist for a daughter, but that’s what Franny was.

my son asked “Mom, what would you do if I became a mad scientist?”

I answered “Well, you kind of are a mad scientist already, aren’t you?” and gave him a kiss. He smiled. (He has just finished playing with Ooze: The World’s Slimiest Science Kit made by Be Amazing Toys. By the way, Growing Tree Toys has a much better page for this product, with a picture that you can enlarge to see it better.)

We didn’t talk about the paragraph that followed:

And since that’s what Franny was, her mom had spent a lot of time trying to learn about mad scientists.”

I love this paragraph — it rings so familiar!

But my son wouldn’t understand if I tried to explain to him why I like this sentence so much. He doesn’t have any idea how much time I’ve spent already trying to learn about him. And I’m nowhere near being done.

I think I’ll read the other books in the series too.

IDEA (Individuals with Disabilities Education Act) – U.S. Department of Education Web Site

As the U.S. Department of Education web site titled “Building the Legacy: IDEA 2004” (http://idea.ed.gov/) says – “The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation.”

The original law, titled the Education for All Handicapped Children Act was passed in 1975. Then in 1990 the law was renamed The Individuals with Disabilities Education Act (IDEA) and in 2004 IDEA was revised and reauthorized (and also renamed the Individuals with Disabilities Education Improvement Act (P.L. 108-446), but the acronym is still IDEA).

Going back to the U.S. government home page of IDEA – “IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.”

The IDEA home page is disappointing right off the bat because Part C (ages birth-2) doesn’t work. Even though it says “coming soon” that note has been there for months already.

Part B (ages 3-21) works, and it’s huge. Good luck figuring out where to find the basic information if you’re just starting out learning about Special Education. Sure, you can download the full statute (http://idea.ed.gov/download/statute.html) but unless you’re a lawyer, your eyes will probably glaze over as soon as you start reading it.

Don’t get me wrong, http://idea.ed.gov/ is a goldmine of useful information, but only if you are somewhat familiar with the whole process and are looking for more detailed information. For instance, I like browsing through the “Questions and Answers” sections for major topics. But if you’re a parent just starting out, this site is not very helpful.

Nestle caving in (and removing artificial coloring) … but only in Australia (and Britain)

The Age – Business News, World News and Breaking News in Australia reports in an article “Smarties to lose a little of their lustre” by Kelly Burke (December 20, 2008) that apparently Nestle Australia has caved in, and despite years of insisting that artificial coloring in candy and other food products is safe, has decided to replace the artificial colors in Smarties with “ingredients derived from natural sources.”

That’s because of “an overseas study” linking artificial coloring “possibly linked to Attention Deficit Hyperactivity Disorder.” (see also the entry “Food dyes and the Center for Science in the Public Interest”.)

I’m not holding my breath on when that will happen in the U.S. or even Canada.

(By the way, apparently Kellog’s also has decided to include natural colorings in their products sold in the U.K., but those sold in the U.S. are still loaded with chemicals, see http://www.cspinet.org/fooddyes/index.html)

Well, I guess we’ll just have to continue banning Nestle and Kellog products in our house. I’m not feeding my children that crap.

Gifted and Special Education in Texas

Going over the news I’ve bookmarked a while ago I found a brief story from FortBendNow.com “FBISD Gifted and Talented Academy Students Connect with Real World,” by John Pope that talked about gifted students “learning about the nutritional perspectives of various cultural food items, including those representative of the Latino, Indian and Asian cultures.”

FBISC is the Fort Bend Independent School District funded by the taxes collected by the Fort Bend County in Texas. The district introduced a gifted program in 1990. According to their Gifted and Talented section of the FBISC’s site, GT program is available for identified GT students at every grade level in every school throughout the district. Kindergartners start getting GT services in February of their Kindergarten year.

Texas has a mandate to identify and serve gifted students, (see the Genius Denied, Gifted Education Policies site), and the programming is partially funded by state.

The mandate “that all school districts must identify and serve gifted students at all grade levels” was passed in 1987. (I found this info on the Texas Education Agency “Gifted/Talented Education” page.)

The “Gifted/Talented Education” page has a lot of interesting links. I especially liked the Texas Performance Standards Project link which led me to the “Texas Performance Standards Project Additional Tasks” page with links to specific projects for various grades.

Other interesting info I found on the “Gifted/Talented Education” page were the “G/T Teacher Toolkit II: Resources for Teachers of G/T, AP and Pre-AP Classes” page; and the “Gifted and Talented Teacher Toolkit,” which interestingly includes a link to a page titled “Seven Essential Instructional Strategies for Powerful Teaching Learning” hosted at the Bellingham (Washington State) Public Schools site.

I wish we lived in a state with a gifted mandate…

But on the other hand, I saw a post on ADD Forums from a parent from Texas whose child has been diagnosed with ADHD impulsive at 3 ½ years old and she did not want to enroll him in a public school because did not want him “labeled as special ed” (post # 7 in the “Came home and just cried tonight” thread) because he’d be “thrown into resource classes or self contained classes.” (post # 27 in the same thread). I guess they don’t do as much inclusion in Texas as they should be. Also, the neuropsych doctor who evaluated my son is from Texas and she said that autistic kids do not get very good services around there.

Yet, the FBISD site includes a page titled “Gifted Students with Disabilities,” which includes a section on Giftedness and ADHD, so I suppose that district does recognize (and possibly serves) gifted students with disabilities.

By the way, in case anyone is interested what (average) kids in Texas are supposed to know at each grade level, here’s the Texas Essential Knowledge and Skills (TEKS) page.