Some Things I have Learned about Learning

Over the years working with our kids' teachers I have run into a few glitches in the common beliefs about learning that didn't work for my kids. I thought I would detail some things that didn't go the way I had expected so you could analyze your own programs and interactions and iron things out early.

Organizational Skills: One year my son's team agreed that my son did not have these skills and decided that he needed to learn them. They tried positive reinforcement, they tried negative reinforcement, they tried ignoring the deficit, they tried orgainzing for him and nothing worked. EVERYONE was miserable and frustrated.

After a ton of discussion it became clear that they were treating organization/disorganization as a behavior, rather than as a skill.

After this they started explaining, modeling and giving him practice, the way they would to teach other skills. THEN they started seeing some positive results...

Behavior: My daughter always rode the 'regular' bus with the rest of our neighborhood. In first grade she suddenly started throwing her shoes on the bus. Now, this is obviously a dangerous thing to do--clocking the busdriver, or anyone else, is not conducive to safe arrival... So, they put an aide on the bus for safety. The aide sat with my daughter and my daughter stopped throwing shoes...

One day I ran into her busdriver in the grocery store and I said that I was so glad that we had solved the shoe problem. He agreed that the shoes had stopped flying, but then he said something eye-opening. He said that we didn't really know if she had learned or was just stopped... He was right of course. There is a difference between being good and being controlled.

I called the school that afternoon and we had the aide moved out of my daughter's seat to allow my daughter to make choices, but to intervene if she made the wrong one... A much better plan, if you think about it.

It should also be noted that compliance by itself is not an appropriate behavior goal. One team I know of wanted to make "will not say NO" a goal for my friend's daughter. If she can't say no how would she deal with unsafe situations and people? That was NOT an appropriate goal.

For another disturbing behavior experience read this post.

Flashcards: Testing and teaching are two different things. You can practice retrieving information that someone knows by using flashcards, but you don't TEACH info by asking someone repeatedly if they know something. Enough said?

Reading Comprehension: I learned this mind-changing thought from David Koppenhaver: To teach comprehension let the reader know BEFORE they read what they are looking for. Endless quizzing is testing, not teaching.

You can do this with a beginning reader as you read. Pause and say "What is Junie-B going to buy?" Or "What is Charlotte going to write?" For Social Studies or Science let them see the questions at the end of the chaper before they read the chapter as well as after. Or teach them to ask themselves what they want to know in the upcoming reading...

Think about it, it makes sense. Do you have a better chance finding what you want by sending your kids to just go look around the house for a few minutes and then asking did they find your phone charger? Or does it work better if you ask everybody to look for the phone charger?

Discrete Trials: While this method is popular and effective for many kids, the applications needs careful consideration. For my daughter it seems to make disconnected information silos in her head. For what she learns to be useful to her she needs webs that connect new info with old in meaningful ways--this helps with retrieval. It also makes what she learns meaningful to HER, not just meaningful while being mediated by a partner in a certain proscribed way.

The Fry Word List: When Jenn was younger her team was looking for ways to teach her reading where they could document their results. They spent hours and hours working on this list of 300 or so words... The problem was that this list is made entirely of small words like if and and and the. Not a noun or a verb among them. It is totally boring. And after hours of tedium, when you can finally read the whole list there is not a single book you can then pick up and enjoy.

A lot of time and effort, excellent documentation, but no meaningful literacy gained. Another activity that only had meaning when someone else was there--if you found her word cards out of context--say on a bus seat--they would mean nothing to you or to her.

3x5 Cards: These are the bane of my son's existence. Teachers REALLY love them. My son can't write on them. He can't jot notes on little bitty cards and by the time he has he has memorized his note and doesn't need the card. Every year we have to discuss this. Every year. When sitting in meetings it is hard to think of alternatives. One can copy a page (using a copier)and highlight the needed info. One could do lots of things on the computer...

Readiness: It's not all it's cracked up to be! One of my son's teams wanted to remove him from the strong academic classes because he couldn't keep up with handwriting (pointing out that Stephen Hawking has "handwriting difficulties" yet still makes use of his education made everyone chuckle and re-think!) Readiness seems like an important concept, but even if my son can never handwrite well he will build his life on the info he has learned. We can teach skills, but we can't stop that info to teach the skills. Ever.

Readiness is also frequently used as a reason not to do things with my daughter--it's a reasonable goal, but should never be a barrier. Whether or not she knows her colors, she should be taught other things. (She does, but I'm just sayin'...)

I hope these examples help you analyze your own situation and avoid some pitfalls. Do you have other examples?

The Best Part About Down Syndrome...

Down Syndrome New Mama started a meme called The Best Part About Down Syndrome. If you go to the comments section of her post you can read what a bunch of parents have written.

Now, I already included most of my favorite parts in this post this spring and I don't want to be repetitive except to say....

My favorite part about Down syndrome is....

Jenn.

Yes, it's sappy. Helloo-ooo, I'm her MOTHER!

Introducing Embry Burrus, Author of Mama and Margaret

Hi, my name is Embry Burrus, and my big sister, Margaret is one of the funniest, coolest people I know. In fact, she is one of my most favorite people to hang out with. She loves to have fun, and is always ready for a new adventure – no matter what it is, Margaret’s up for it! She is also one of the most loving, kind and non-judgmental people I know, too. She shows me everyday what unconditional love truly is. She is the best sister anyone could hope for.

Oh, and by the way, she has Down syndrome.

That used to be the first thing I would tell people about Margaret, as if I needed to “temper” whatever I said about her with those words: She has Down syndrome.

But now, I realize that the fact that she has Down syndrome does not define her at all. People don’t like to meet Margaret and hang out with her because she is all of those things and she has Down syndrome; they like to meet her and hang out with her because she is all of those things, period.

What an awakening that has been for me—one of the many things I’ve learned from being Margaret’s sister.

I realized several years ago that there was a wonderful story in Margaret’s life, and in the journey that I have taken in being her sister, so I’ve written a book about her, and our now 90 year old mother. If you’d like to meet both of them, please visit my website .

I look forward to meeting everyone on this blog, and thank Terri for the opportunity to contribute my story!

October is Down Syndrome Awareness Month

I am not going to promise 31 posts about Down syndrome this month because there are just too many things I want to write about, but I do have a few treats planned... Stay tuned!

Unexpectedly Effective Advocacy Skills: Strategic Use of Information (Part 1)

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

Information and perception are always working—either for us or against us—with some attention and a few skills you can make it one of the most effective tools in your toolchest.

Take a moment and read this article.

What struck you about it?

I have a few impressions:
• It is from Wasilla—a few short months ago I had never even heard of Wasilla.
• It’s a transition program—sounds quite community-focused. Lots of good skills taught and some success.
• But: WHAT IS UP WITH THE DISCUSSION ABOUT THE GUY’S HAIR?????

This sounds like a good program. And I found this part of the article upsetting.

If this article were written about me I would be mortified (though I almost never forget to brush!) If it were written about my older two children the screaming at my house would never end—and neither would the harassment they would get from their friends. Yet, it is almost expected that these remarks will be written about our kids with disabilities.

Some will say “but it’s accurate.” And it is of course. Truth be told, most all of us have used the bathroom and performed some personal hygiene today (or if we haven’t, we certainly should have!) Yet, for most of us, our success or failure in this area won’t make the papers.

The reporter was looking for a story that illustrated that the program was supportive. The program (accidentally, I’m sure) gave her an easy way out by holding conversations that should have been private in front of her.

There were choices. It is not that they HAD to humiliate somebody in order to get their point across. The program probably also showed the reporter a client who was using much support and many repetitions to learn a job skill. Same story about needed support—dignity intact.

The reporter chose the more sensational angle.

See, the program showcased what they wanted to say, they just weren’t as vigilant about not showcasing what they did not want to say.

We want the world to look at people with disabilities and “Presume Competence” as writer Kathie Snow says. We can support this by Presenting Competence.

And if this can happen with experienced programs it can happen to any of us, and it often does.

The trouble is we look at where we are and what’s next, not at the bigger picture.

We're like sheep. Yes, sheep.

Sheep keep their heads down and munch their way along from the hunk of grass they are eating now to the next tasty hunk. They don’t look up to notice that they have strayed far from their path, to see the wolf, or to see that they are on the edge of a cliff until it’s too late.

Lucky for us we aren't sheep. We can minimize these occurrences with some planning.

Start by planning your underlying message. Set some parameters that don’t really change no matter what you are trying to achieve.

Having standards in place helps keep you from making as many unknowing blunders.(There will still be some and they will make great blog fodder, but minimize where you can!)

This could keep you from presenting your child as totally pitiful (in their hometown where you someday hope they will get a job) in order to make $$ for your parent group for example.

Now you may want to raise money for your group and your child can certainly be a part of it—this only makes you think about how.

Decide where you intend to go: My family believes that our kids—all of them—are valuable, they belong, and their weaknesses or struggles do not cancel out their strengths.

Equally important: Decide where you will not go: We will not embarrass each other. We all have dignity which we will defend. Details are shared thoughtfully. Privacy applies to all of us.

Compare your current situation with your planned message frequently to stay on track. Also check in with others. I run some of my blogposts by my friends or my kids to make sure I am on track and not humiliating anyone.

This doesn’t mean I can’t tell most stories—it just sets some parameters around how I tell them. For instance, I can mention that I am doing lots of laundry because of a stomach bug, but can’t detail exactly HOW the laundry got so dirty (somehow I think my readers are ok with this!)

I can showcase the funny, the frustrating, the wild, the weird, the quirky and the sloppy, good, bad, and downright icky—I just can’t make my kids look pitiful, stupid or less—ever.

Not even for a good cause.

Setting the internal parameters is the first step. Over the next couple of Tuesdays I will talk more about using information strategically to affect the situations you face. Have a lovely week!!!!

picture from here.

Disability Blog Carnival #47 Is Up

This is the 47th Disability Blog Carnival and it is posted over at Day in Washington. The theme is Policy. As always the carnival is a gathering of interesting perspectives. Go read!

The next Disability Blog Carnival will be posted HERE on October 23rd. The theme will be Disability: Capacities and Capabilities.

There are many things I have learned about and have learned to do because of my experience with disability that I might not have learned otherwise. I think this is true of many of us. I think folks inside and outside of the disability community rarely recognize or celebrate the skills we have gained.

You can send your posts through the Disability Blog Carnival site (which, sadly, has inaccessible CAPTCHA) or you can leave the link in a comment on this post, or in a comment over on Disability Studies, Temple U. Or you can just put Disability Blog Studies in the title of your post and Fearless Leader Penny will usually be able to find them.

October is Down Syndrome Awareness Month

So read this.

And this. And this.

Watch this.

Go to one of these.

You are officially Down syndrome aware. Congratulations!

Is this enough? Are you there yet?

Ahem. No.

So what are the next steps you ask?

Respect people with Down syndrome.
Educate folks with Down syndrome.
Include people with Down syndrome in your churches, groups and events.
Welcome neighbors with Down syndrome.
Believe in people with Down syndrome.
Hire workers who have Down syndrome.
Support healthcare for people with Down syndrome.

Appreciate, enjoy and celebrate Down syndrome.

Get to know a person with Down syndrome—it could make your world a better place (it did mine!)

PS: My favorite moment from our local Buddy Walk? When a petite kindergartner with pigtails and Down syndrome said to my 14 year old daughter, "Do you have Down syndrome?" My daughter answered, “Yes, I do,” and they both smiled and sighed blissfully.

Loved. It.

Healing and Get Down: 31 for 21

Good heavens, where does the time go??? This past week has been overflowing with kid activities (my son was in a play and yes he was wonderful, thank you!)Once you step away from your blog--writing and reading--for one minute it becomes hours and then a week before you know it.... Forgive me, I have missed you all!

One of my blog-acquaintances is hosting a blog-fest on healing. I said I would join, I even wrote the post. I also found out about Get Down: 31 for 21 and said I would join that. Then I could only visit my computer for 10 minutes at a time. I have some serious make-up posting to do!!!!

So here is the link to the healing blog carnival. And here is my post:

Healing is a tough subject for me. To start with, I’m a nurse.

Combating illness and loss of health have been a big part of my life. When I graduated from nursing school I did my time in acute care, treating any change or deviation from “The Norm” (not the guy from Cheers… I don’t think…) like a sworn enemy. I felt powerful. It was grand.

Then I grew up.

Since that time I have worked in chronic care and gotten to know people with disabilities and I have learned that health, wellness, brokenness, and ‘the norm’ are not as clearly defined as I used to think. In fact it’s all pretty subjective.

In the disability community there is a range of responses:

I know people whose disability is their sworn enemy. They pour all their time and energy into achieving certain health goals such as walking again or speech or something else. I know folks who have poured their life’s savings into a trip to Europe for holy water to end their diabetes. These folks will often sacrifice other interests and relationships and more to meet their goal—and they could never do anything less.

I know others who see their disability as a ‘fact-that-is’ and whose focus is not on a “cure.” These folks title their goals differently. They tell you they want mobility, communication and solutions usually to support their other interests and relationships. These solutions may take a number of forms. These folks are equally committed to meeting the goals they set for themselves or their children—for instance, I have a friend who is scouring the globe for the most effective voice-output device for her son because he wants to do public speaking.

And, of course, there are many points in between, alongside and around! (And none of these folks can understand for one moment why the other lives the way they do!)

As a nurse my role is to listen to my patients and apply my expertise to THEIR goals.

As a mom I am pretty comfortable with my kids’ diagnoses. They don’t usually bother me much and I get pretty offended when people try to foist cures or lay hands on them. I don’t think they’re broken, just different. I do work hard to find therapies, treatments and accommodations that serve their lives (just try to stop me from getting them, I dare you!) but….

“That serve their lives,” is the key phrase to me.

I read an essay, years ago, that said that “A violet is not an impaired daisy.”

I thought that was perfect—I like both daisies and violets and am privileged to have both in my garden. (If anyone knows where this essay is online I would be happy to link to it. I think I probably read it around 15 years ago, no idea where.)

My comfort level is not always comfortable for others, I have found. On our first visit to the endocrinologist when my daughter was 8ish I wrote on the office questionnaire that other than thyroid issues she had no other health concerns.

The nurse who was weighing and measuring was looking at me oddly and started grilling me.

“Does she have any other health conditions?”

“No, we’ve been very lucky,” I answered.

“Her heart is ok?”

“It’s fine.”

“What about her digestion?” She asked.

“No, she doesn’t have digestive problems.”

“How’s she doing in school?”

“Fine”

“She doesn’t have any other health conditions?”

I shook my head.

Finally she took a deep breath and said, “Does she have any SYNDROMES???”

“Other than Down syndrome?” I asked.

“She DOES have Down syndrome then? Oh, well OK then,” she said, and left the room.

Finally the light dawned and I realized that she thought I didn’t know… or that I was in denial. I laughed through the rest of the appointment and all the way home.

It still makes me chuckle.

While I can’t stand the idea of loss of function and work and pray hard for healing of illnesses like cancer or addictions, I view disability through a different lens.

I think it is perfectly acceptable for healthcare to become a central issue for short periods while someone is in the hospital or recovering from surgery, but I can understand if a person doesn’t want to make it the focus for their life.

What could be better than a crisp, efficient institution? And what could be wrong with days full of daily care and therapies and treatments??

Well, plenty, if you would rather do something else.

Individualize. Everything. Always.

Here’s my list:

Things that need healing:
• Presumption that a one-size-fits-all plan/belief could actually fit anyone!
• Prejudice, unkindness, bad attitudes
• Systems that have forgotten their focus
• Rifts between—well, pretty much anyone!
• Illnesses and losses that get between people and what they want to do with their lives.
• Medical model, we-know-what’s-best-for-you situations.