Why I'm not going to the National Down Syndrome Conference

(Note: a truncated version of this message was distributed owing to Blogger behavior on certain iDevices. This is the complete post.)

I've been seeing Facebook posts from excited people talking about the upcoming convention in July. The early bird deadline is today. But I've decided not to go.

(This post would probably be a lot more popular if my reason was owing to disagreeing with the official position of someone who is speaking, or with the vision statement of the NDSC. However, I'm just not much about controversy. I tend to think that both sides are worth listening to in *most* cases. My reasons for writing have to do with my own experience, and my hope here is that my experience will resonate with someone else.)

My file cabinet, inbox, reading list, desktop and a box are full of materials on so many aspects of Down syndrome. How to teach reading, kindergarten readiness, inclusion best practices, oral motor tools, lists of apps, apps, physical considerations, speech and language development. I could probably throw my own convention!

I think the ongoing challenges (opportunities, in the positive thinking parlance) take up a tremendous amount of energy for me. I can see how extroverted moms and dads might really thrive in the convention atmosphere, but I think my brain might just pop if I try to put too much more info in there.

Maybe the biggest challenge (opportunity) for me is to actually use my resources with any consistency. I often say that if Kepler had been our first child, he'd be being raised differently. More lessons, more teams, more play dates, more therapy, more deliberate educational activities at home. But, well, with him being our fifth, and coming along when I was losing energy rather than gaining it, I can occasionally accept my more lackadaisical, laidback parenting and recognize that Kepler is a happy, well-loved, smart kid.

More often than not, though, especially in environments such as a convention, I become aware of how very lackadaisical and laidback I am and always wonder if his speech would be more intelligible if I were doing more; if he might be reading already if I'd followed through on all the reading resources I know of. So events like conventions just seem to drain my energy.

It finally occurred to me recently that it might be a great idea for me to hire a babysitter sometimes. I have had several built-in babysitters, but Kepler adores being the center of someone's attention, which is what he gets from a hired babysitter. What a relief to discover that I don't have to do every. last. thing. myself, that babysitters can even put Kepler to bed! That's a step in the right direction to being able to be a little more free for events such as a convention. (Of COURSE Greg puts him to bed sometimes; he just travels a lot.)

The thing I would enjoy about something like the convention is the possibility of finding a new heart-to-heart friend who understands life with Ds from the inside. Between all the moving we've done, Greg's traveling for work, and homeschooling, many friendships have faded away over time, and have been replaced with e-friends. These days, making new friends IRL seems like a challenge indeed.

But if parenting has taught me anything, it's that I am resourceful and creative and persistent. Simple next step is to invite a mostly online friend to get together! It's not like I have to plan a 200-person catered affair to get to know someone!

I've already got two people in mind.

Tl;dr: Writer is on information-overload, but social-underload.

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How Saying No Blows Procrastination Away

Are you among the elite who have perfected waiting until the absolute last second to complete something? I bet you're in that special group with me.

The excellent procrastinator usually neglects to consider absolutely normal events that require adjustment. Traffic is normal and often I pretend like I don't need to imagine there might be a slowdown, or someone I'm meeting is late, or I make a wrong turn, or I spill something, or better yet someone else spills something, or I have to go back because I forgot something. No matter how many times life offers me natural consequences for procrastination, I refuse to change my ways.

Lately, I've been procrastinating on several projects I actually want to do! Can't seem to drag myself to the start line. I've been sitting in a comfy chair with my iPad and iphone handy so I can keep up with the people on Facebook who are posting about getting on with life.

Thinking, "Hm, I should get started on that project."
And then I say, "Nope. I'll just stay here thanks."

So I was driving son to work today and I realized I don't want to keep driving him to work. BUT.

I do not say no. Not just to him. I don't say no to ANYONE unless I am physically going to be elsewhere during the requested time. I'm SO good at pretzelizing myself to do something for someone else. And while I do enjoy helping others, I realized today that I DO NOT SAY NO.

That's why I sit in my chair. Procrastination is my way of saying no. "I should get started on the project." "No."

The only person I say no to is myself.

I was this way before I had kids, even saying yes to a proposal of marriage to a young man I was pretty sure I was not going to marry. I said yes and then suggested we keep it a secret. He was a good guy who deserved (and ultimately found) a woman who would treasure him. But, man, being a mother has turned this tendency into a raging addiction. And even I know that saying no is a huge and very important parenting and life skill.

So that's today's huge revelation. Captain Obvious is tapping me on the shoulder and pantomiming "Duh." I knock Captain Obvious's block off and think about the situations where I want to say no to others.  If you need me later, you'll find me in front of the mirror, practicing saying that word. "N-n-n-o, [insert name here]."

And then I'll get going on those projects.

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How Gary Keller's The ONE Thing got Kepler to Stay with me in the Parking Lot

Look at that little angel face.  Would you ever suspect he'd run away from his mommy in a store, parking lot, park, anywhere-he-needs-to-stay-close? For Kepler, it seems that "Stay with me" is apparently secret code for "Run, Forrest, Run!! Talk about danger!

Taking him places was becoming a huge problem. I dreaded every trip.

Enter Gary Keller and Jay Papasan. Or at least their book, The ONE Thing, The Surprisingly Simple Truth Behind Extraordinary Results.

Not only did I:

- hear about the book, but I also 

- reserved it at the library, and I

- checked it out and brought it home, and amazingly,

- read it from cover to cover, blanketed it with PINK post-it notes, AND

- put it into practice. 

I'm particularly adept at those first three steps, but actually getting around to reading the book is more challenging, putting it into practice is as rare as a two-headed unicorn.

Keller examined the research on multi-tasking and writes on page 44, "Multi-taking is a lie." We simply cannot FOCUS on two things at once. Narrowing our focus to ONE thing yields extraordinary results, as he says. Let's see.

With multiple areas in life that simply must be addressed daily, I have tried to do much multi-tasking. Sometimes it works for things that don't need strong focus, but one where it doesn't is parenting. Applying Mr. Keller's thesis I made a list of the essential areas, and then asked myself this question about each area (see The ONE thing, pg. 106). Here's parenting:

Q:  What is the ONE thing I can do today in regard to parenting that will make everything else easier or unnecessary?

A:  Read and complete the first three chapters of "Without Spanking or Spoiling," a parenting book I have had since 1996 and have not yet read!

Q: What did I discover in those first three chapters?

A:  To define the problem specifically and behaviorally. Vague problem definition was "Kepler doesn't obey." Specific is "Kepler runs away when I tell him to come to me."

Q: What else did I discover?

A: To brainstorm solutions. I came up with 10. 

1. Buy and use a child leash.
2. Take a 3 ft rope along to show him maximum distance he should be from me.
3. Create a simple rhyme like "Obey means Stay."
4. Appeal to his desire to be helpful.
5. Find books on the topic to read to him.
6. Create a social story.
7. Leave him home at all times.
8. Carry him everywhere.
9. Allow him to lead and explore occasionally on errands.
10. Make a leader badge for him to wear where it's his turn to lead.

Q: What happened when I took him next to the store?

A: We got out of the car and he proceeded to dash out into the parking lot while I was getting the cart. (I hadn't made my plan yet!) I grabbed him by the arm and his eyes got wide as we got into the backseat and I gently continued. I looked in his face and said words I guess I never really said before: "Kepler, you MUST stay with me for your safety. There are cars and you could get hit by a car if you run away from mommy. If anything happened to you, I would cry forever." Of COURSE  I had told him bits and pieces of this but not like this; not sitting in the car giving HIM my full attention, focusing on just this ONE thing. 

My words apparently resonated with his sensitive heart, because when we got out of the car, he specifically stood right by me and looked up at me showing me what he was doing. I ended up allowing him to lead part of the time, gave him huge kudos for the good things he was doing -- staying with me, helping me, listening, and I used a previous helpful rhyme: OK means Obey, and added, Obey means Stay. 

You probably know Kepler is the youngest of five kids. The other four didn't run away. Ever. Why? I don't know. They probably thought about it, but maybe my face was stiffer and sterner back then. So who needed strategies for this back then? 

tl;dr: Gary Keller's book The ONE Thing, The Surprisingly Simple Truth Behind Extraordinary Results, has practical applications in parenting and made a huge difference in my experience of taking my child on errands with me.

I'll probably have to review all of this next time, and the time after, and the time after, but he will eventually understand and apply, and so will I. I just have to remember to focus, really focus, on ONE thing.

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This Electronic Life

from http://www.collegehumor.com/post/6121069/how-to-hack-a-computer-in-an-action-movie

Have you ever called a company and been frustrated by the phone menu? Ever tried to login and forgotten the answers to your security questions? Ever wondered if we might not be better off having personal relationships with the people we do business with?

Square the phone menu, add in a quadrupled set of websites, all with their own login, password, security questions, and blasted captchas.

And what do you get?

A REALLY LONG TIME on the phone, navigating the very complex phone menu, entering digits and passwords and account numbers, waiting on hold, finally reaching a person, and then confirming all of the same digits and account numbers, and then ending up with answers like: "Your husband will have to call us or write to us to grant permission for us to discuss your account."

I admit I find this whole thing exasperating. I don't see it as an opportunity, but maybe it is. An opportunity to write down every last detail there is for every account we have ever had?

The irony here is that my very capable husband has NO interest in talking with the XXXX Insurance Company about this claim or that coverage, and is so very happy that I am able to and interested in handling these details.

As much as I try to simplify things, the sheer vastness of the internet just makes it very challenging to stay on top of the details. I always thought of myself as a detail-oriented person, but the volume of details has increased to the extent that I dread trying to call someone, especially the insurance companies, to solve a problem or get information.

And then there are the places that require authorization EVERY SINGLE TIME from my dear husband. Not that he is working or otherwise busy or anything. Aargh. I love how they ask if he is right here with me so they can get approval from him. Ha.

Do you have any tips for how to simplify things? Because I'm all ears, here.

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A Beautiful Thought

A blind child …….. guided by his mother ……… admires the cherry blossoms.    --Kikakou

At times, I am the blind child.

At times, I am the guide.

At times, I am the cherry blossoms.

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If I Knew Then What I Know Now -- Ten Things I'd Do Differently as a Homeschool Mom

This is not what homeschooling looked like here.

Saw a link on Facebook from a homeschool mom who shared what she would do differently now as a homeschool mom. I could relate to some of it. It was posted by a homeschool mom I rarely see, but care about very much. I often read the comments on blog posts, but decided this time to write about my own list first.

First of all, I didn't know then what I know now. Part of the journey of homeschooling is the learning that the parent does. So, maybe this is all just a moot point. But, let's see ...

1. I would de-emphasize intelligence and strongly emphasize character. Thing is, I actually thought I was doing this. Truth is, my "students" were all above average. I was constantly amazed by their grasp of concepts, their precociousness, and the joy I felt at just watching them learn. I didn't realize I was reinforcing intelligence as much as I did. There were multiple times when something they did or said just BLEW ME AWAY. Like Valerie just up and reading the back cover of the Billy Graham autobiography I was reading. What was she, three? Four, at the most. I hadn't even tried to teach her to read. I didn't know that kids could learn to read just be being read to.

2. I would understand that no one else was going to be as thrilled about my children as I, and instead of rueing that, I would be affirming and encouraging to every other mother I came into contact with, realizing that she was as excited about her kids as I was about mine. At the time, my hands (and mind!) were full. The kids were born in 93, 94, and 95, and then 98. Kepler came along years after the first four, but I wasn't just homeschooling one -- I had a class!

3. I would be so much kinder to myself. Nothing ever felt like it was enough, and I know MANY homeschool mothers who experience this. Probably just about everyone who homeschools feels this at some point.

4. I would recognize a kid "come-apart" as an opportunity, not a sign that I was failing at my job. This might be the biggest one for me. I had a misunderstanding about my own role and responsibility in the feelings of my children. I needed them to be happy, and that was probably the biggest disservice I did them in my zeal.

5. I would remember that every type of school situation is good for someone, and every type of situation is also less-than-ideal for someone. Now that I'm on this side of things, where the educational methods of our kids include(d) some homeschooling, a bit of public school, years of a two-day-a-week homeschool set-up, an exhausting early grades online school, a poorly-administered online high school online, and the learn-while-you-sleep method we practiced for a few weeks months, I've discovered that there are PROS and CONS to every method.

(As an aside, big-time homeschooler mother, Mary Hood, wrote a book (June 1995) called "Onto the Yellow School Bus and Through the Gates of Hell." Back when I started homeschooling, there were only a few voices writing about it. Although I never bought into Mary's philosophy, the title comes to me often when I put my little Kepler on the school bus and send him to school where he is absolutely loved and cherished by his team. From the bus driver, to the school secretary, to the librarian, to the other students, I hear all the time how much joy he brings them. And they, as a group, give him things I simply cannot provide at home. )

6. I would find a balance between the heavy peer pressure of the school setting, and the freedom we had as homeschoolers. Without adequate preparation, going into public school can be (and was) traumatic. Happy-go-lucky kids who were unself-conscious became very self-conscious when they entered the public school system, not because they were deficient, not because the school system was evil, but because there are developmental phases that happen.

7. I would never, ever, ever compare my insides to anyone else's outsides. Because, you know what? My insides ALWAYS came up lacking, when I looked at someone else and thought I knew ANYTHING about them based on what I saw.

8. I would find a balance between my very laid-back teaching style, and a more directive style. Both styles work in different situations, but some work better than others with young learners.

9. I would get up earlier and get us going and have a routine that we stuck to for more that a few days or weeks. Yes, back then, I was exhausted, dealt with depression, and had several "owies" on my heart. But that would have been a great example to my children, and one less thing to chastise myself about.

10. I would get professional photos taken every year. Well, I think I would. No, this one is that I would take a similarly posed photo in a similar place every year. I still have extra copies of the professional school photos I got of every child from every year. They're so hard to let go of, even if we have enough for every person in our family! My photos would be all about the heart of the learning, the heart of the family, the heart of the giving, the heart of the love.

Things I am extremely glad I (we) did?
1. Read out loud, nearly every day and evening.
2. Do as much experiential learning as we could.
3. Practiced as best I could, a lifestyle of learning.
4. Enjoyed our children.
5. Made it through.

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Testing out the Creaky Writing Fingers Again

Hello? Hello? Anybody there?

I guess you can't see all the blog posts that are in my mind, because they never got written down.

Remember? I started working at the grocery store in June. Two times I crept home from the store and wrote about my experience. Most other days, I collapsed on the couch and pondered the state of my aching knees, hips, feet, shoulders, arms, and hands. Even with that, it took me four months to quit the job, in tears, and begin to heal.

At first, I dreamed about the store. I missed it and had to clothespin my lips closed when I went in to shop lest I blurt out my desire to come back to the familiar pain.

A month of recovery later, my knees could bend without constant pain; my hips went back to their normally schedule programming; and the knot in my back had loosened.

Two months of recovery later, I can walk in the store, buy my pomegranates and cereal and grass-fed beef, and have but a distant memory of stuffing product on shelves, cleaning up after customers (such messy people), and rushing, rushing, rushing to get the unending and unreasonable to-do list a little smaller.

I do miss T., one of the store co-managers, and L., my remarkable boss, and N., a co-worker.

In the quiet of my home, the memory of the non-stop sensory stimulation continues to become more distant. No longer does the advertisement for Forever Stamps echo in my head. The ache in my hands from baling the cardboard has faded. Straightening hundreds of bottles of shampoo and body wash no longer takes up any space in my life.

Retail is kind of brutal, when all is said and done. Local store personnel, dedicated and committed, are constantly dealing with choices made by distant corporate types. Distant corporate types who occasionally come by, unannounced, and see that their minions are doing it all right. The pay is low, the hours are long, the work is hard, and the workers are faithful. Not all of them, of course, but the core group at my store were committed to providing the customer with a great shopping experience. And they did, as great as it can be when the shelves are mostly full of highly processed products, all crying out for attention -- Buy me! Extra roll enclosed! See my colorful packaging! New! For a limited time! 

Plenty of other women my age, in my season of life, don't have the luxury of deciding the job is too physically demanding. If nothing else, that brief foray into working in the retail grocery business opened my eyes to what many people have to do to earn minimum wage.

Testing. Testing. Check 1. 2. 

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