The Small Things

Not knowing when the dawn will come, I open every door.

--Emily Dickinson

We tend to applaud our typical children for the major milestones they meet--learning to walk, ride trike, go through a couple of hours without fighting, etc.

But when we have children with disabilities, many days and months may go by without apparent advancements. That's why it becomes so important to notice the little things and to applaud every achievement you see.

As I held Wade on my lap every day and did 30 minutes of Starfall, I could see tiny responses that encouraged me to believe that he was taking in the information and processing it even though he had no words to tell me so. One day it would be the slight huh, huh, huh sound he made when the letter H page was up. Another day I could see that he was imitating the motions for the ABC song.

And then one day, when we were going through the pages for the letter G, Wade signed "girl". But the word girl hadn't appeared on the screen yet. And I realized that he was not only learning what was presented at the moment, but that he also knew what was coming next!

As I noticed each small confirmation from him, I was able to use that knowledge to cheer him on and give him confidence in his success, so that he would be encouraged to build toward future accomplishments.

When I first read some books on the development of fine and gross motor skills, I was overwhelmed with the enormity of breaking down each typical action into the small components that work together to bring about movement. Many of those tiny areas of development I had never noticed with our other two boys. Yes, I knew that they went from being able to hold an object for only a few seconds to being able to purposefully pick it up, hold it, shake it, and drop it, but I didn't observe the little changes that make those new abilities possible.

I'm still amazed at what I don't see that our outstanding therapists point out to me, but I'm getting better at paying attention to detail and knowing what kind of details to look for.

And it's so wonderful now to look back through those books and realize that Wade has reached most of the goals in them. That knowledge helps me to relax for the future and gives me confidence that teaching him isn't difficult or overwhelming. It just takes time, attention, and consistency.

So the tip for today is to notice and celebrate the small things...because in the end, they are the foundation of the big things.

Changing Diapers with a Purpose

You know all those minutes spent changing diapers on your baby when he has nothing but you and the ceiling to stare at? Make use of them!

Sing the ABC song and count the buttons and snaps. How many times a day do you change a diaper? Enough times so that your child will have the ABC's and counting process memorized without ever knowing he was in school. When you've graduated from the diaper-changing era, carry over the counting and singing to the potty chair mode.

If you climb the stairs to bed, count the stairs. If the baby's room has bears (umbrellas, mushrooms, or trolls) on the wallpaper, count them every day before you put him to bed. (no, not all 500 trolls; just 20 of them)

Along with that for Wade, I did 30 minutes of Starfall every day, starting when he was still quite little. He couldn't say all of the sounds yet, but it helped him to hear them over and over (and over and over).

Was it mind-numbing for me to hear the same letters, sounds, song, and dance every day for 30 minutes? Yes. Was the small sacrifice worth it? YES, a hundred times over.

Wade can now sing the alphabet song (completely off-key), say all of the letters and their sounds, count to 20, skipping only 15 and 16, and read many words and sentences even without a picture present.

And as he learns to read, his vocabulary and intelligibility increases. If he can see the word, somehow he can say it better. For a while, he kept saying bup instead of cup even though I knew he could say the hard c sound. It (finally) occurred to me to spell it out with magnetic letters on the fridge. Abracadabra! He could say it, cup!!!!!!!!!! That day I thought cup was the most beautiful word in the dictionary.

Starfall stands head and shoulders above any other computerized reading program available that I have seen. The full-screen displays are simple and uncluttered without the annoying meaningless music running constantly in the background. Nothing in the program is without purpose, and I absolutely love the effortless introduction to classical music, art, and poetry.

And best of it all, it is free.

Starfall does have a sister site now called More Starfall which is available only as a subscription at $35 per year. More Starfall focuses on math, and colors, as well as reading. It is well-worth the subscription fee.

The Power of One

Sometimes as parents of children with disabilities, we can become overwhelmed by our long daily lists of very important things to do. Yes, we agree with the need for us to be teachers for our children, but then we are also nurses and therapists. And we feel as if no one person can possibly fulfill all of those needs.

And if you think that, you are absolutely right. You can't.

But you can do One Thing, and you can do that One Thing every day. And even if you can do only one helpful activity with your child, you are farther ahead than you were yesterday.

As you keep on doing that One Thing, it becomes second nature to you. And then you can add One More Thing.

So to start climbing up out of the pit of despair, here are some rules to live by which were taught to me by a very little person with Down syndrome:

1. Prioritize. Will it die if you don't feed it? Then it's important.

2. Simplify. Simplify your meals, simplify your schedules, simplify your ambitions. There will be another stage in life where you will have sparkling windows, fashionable decor, and elaborate dinner parties. That time is not now.

3. Let go. Let go. Let go. Let go of worrying about what people think; let go of your pride; let go of your ideas of perfection.

4. Pray. Remember that you, under no circumstances, can do it all. But you have access to a God who can.

I am only one.

But still I am one.

I cannot do everything.

But still I can do something.

And because I cannot do everything,

I will not refuse to do the something that I can do.

...And with God's help, I will.

--Edward Everett Hale

All Parents Are Teachers

To celebrate October as Down Syndrome Awareness Month, I will be (trying) to make daily posts of some of the things we have done with Wade that have proved to be successful as well as links for some of our favorite resources and products.

Sometimes I have heard parents say, "Oh, I could never be a teacher!"

But my mother always told me, "All parents are teachers." Your children are constantly learning from you whether or not you are intentionally teaching. They learn and imitate your attitudes, your habits, and your ambition (or lack thereof).

For all parents, both those of us who have children with disabilities and those who don't, it can be easy to think that the child goes to school or to the therapist to learn, thus relieving us of responsibility. But without carryover at home, the potential of your child diminishes alarmingly.

Don't say: "I don't know how to do that; ask your teacher."

Do say: "What an interesting way to do that! I have never seen that before. Let's sit down and figure it out together!"
(And then admire and praise him for being able to learn it faster than you!)

Don't say: "The therapist is here; now I can take a recess."

Do say: "Show me how to do that. What else could I be doing to help my child meet his goals? Are there books I could be reading to educate myself? What about DVDs to watch, classes to attend?"

In other words, WAKE UP PARENTS! You are teachers; you might as well be purposeful teachers instead of just accidental ones. I liked the church sign I saw this morning: "The only thing accomplished without effort is failure."

A little time invested in the beginning will save you many headaches later on.

So get up. Get a purpose. Get enthused. And get going! We have lots to do!

Here is today's link to inspire you further.
Homeschooling Is Not Optional

What We Didn't Know

Four years ago, we didn't know that October is Down Syndrome Awareness Month.


...We didn't know that along with the gift of this tiny new baby, we had also been given new vision to see vibrant new colors and extraordinary beauty in unexpected places.


...We didn't know that we had just won a scholarship for an education in the world's best school.


...We didn't know how lovely it is to have the sweet innocence of childhood stretched out to last a little longer than ordinary.


...We didn't know the joy we would experience, the friends we would make, the strengths we would develop.


...We didn't know that what we thought was our greatest fear was instead our greatest blessing.


...We didn't know---but now we do.


Thank God!


"...and a little child shall lead them." Isaiah 11:6

More Birthday Time

Christopher turns seven and designs and decorates what we believe to be the first and only pastel pink, yellow, and blue rocket ship. (NASA was not available for comment to confirm this belief.)



The rocket engines fired; the flames shot; and the smoke billowed. Blastoff to a happy 8th year coming up!

Birthday Time

Ah.....at last a use for that marbled paper!




Signs Unlimited by Chris



With love from Randall



With love from Chris (Designer Paper Unlimited)



With love to the Girl Scouts who wanted to learn about Down syndrome and who all sang "Happy Birthday" and fed Wade cookies and ice cream. We like Girl Scouts!



Birthday cake decorated by Wade! Oh, what a good day!

Continuing Education

...running the computer



...getting dressed




...riding trike




...loving puppies




...going to college





(...talking to a class of first-year med students who were studying Down syndrome. Wade loved the applause!)


...but much study is a weariness of the flesh.....

Lady Marbles Paper and Loses Her Marbles

During a brief moment of insanity, I decided to do the boys' paper marbling project indoors because, with temperatures in the upper 90's, it was too hot on the patio.






I faled to remember that turpentine reeked quite so badly.


After our project was done, it took a regimen of open doors and windows





...fans





...a batch of bars and three loaves of bread to get the house smelling livable again.






So much for thinking the patio was too hot...

(...yeah, that's 87 degrees indoors...)












Time to bring the snowballs from January out of the freezer!






(Now if we could just find all those brain cells we lost while breathing turpentine...)

Open, Shut, Cut, Cut, Cut

Cutting with a scissors has been an OT goal for some time now.





This week he finally mastered it!