Love At Its Finest

Today we want to celebrate the life of a little girl whose tiny hands held the world and made it a better place to be.

On what would have been her 3rd birthday, we remember her tenderly with hearts full of love.

Christine Janelle Hobbs

October 13, 2007 - February 19, 2009

And as a tribute to parents everywhere who have loved and lost, I want to present a very beautiful writing from a mother who also journeyed unexpectedly and loved unreservedly. Dr. Beth Harry captures the essence of a love that brings out the very best within us in her eloquent book Melanie: Bird with a Broken Wing: A Mother's Story. She has graciously given me permission to share with you her poem "Melanie".

little girl

you blew my world apart

when you appeared

defying

with your intense fragility

my clean-cut classic image

of motherhood

but when you fixed those bright black

ackee-eyes on me

and clutched my heart with all your might

I knew

that it was sink or swim

for both of us

and so it was that we swam against the tide

at one in strength and one in inspiration

until you died

and blew my world apart

again

Can You Hear Me?

Does this look like a boy who has sinus congestion and fluid on his ears? I didn't think so either.

But fortunately, Wade is equipped with a vigilant speech therapist who picked up on the fact that he wasn't following familiar two-steps directions last week because he wasn't hearing properly.

We had an appointment with the ENT today who told us that Wade's second set of tubes are no longer functioning, resulting in fluid on his ears from his allergy-related head congestion of the past week and a half. So after we see how the antibiotic works in getting rid of the fluid, we'll have a follow-up appointment to discuss having the third set of tubes installed.

It can be very difficult for me to tell when Wade has fluid on his ears because of his unfailing patience and pleasant disposition. But we have been told that hearing through fluid is sort of like hearing underwater. I can't imagine how annoying that would be.

It seems that if he doesn't have functioning tubes, he has continual fluid on his ears. And continual fluid left untreated can cause conductive hearing loss as well as sometimes irreparably hindering speaking skills.

So get those ears checked routinely!

Wade has appointments at the ENT every three months, but most of the time hasn't even been able to go that long in between visits. This summer was good for him with the tubes still in fine shape and with all that pool time helping to keep his very tiny ear canals cleaned out. But allergy season and winter are not great things to face without functioning tubes.

Even though I am learning what to watch out for, I still can easily miss clues with a child who doesn't complain. I thought that certainly his tubes would still be in good shape since it's only been about seven months since surgery. But I was wrong.

Thank God for those wonderful people called therapists to whom our child is more than just a job!

Go Ahead and Laugh

Don't tell me God doesn't have a sense of humor.

Just when you think you have child-rearing figured out, along comes the next Personality who bears no known resemblance to the previous one. And you're back to figuring it all out again.

Then the third one appears with Down syndrome and so in addition to child-rearing books, now you have Down syndrome books which you devour while trying to figure out what particular quirks are just typical quirks and which are part of the extra chromosome.

It all adds up to being a very great way to make you pray for wisdom every single day!

It also reminds me to laugh at myself and to be flexible, which are two of the greatest rules ever.

Let me explain.

One of the characteristics of Down syndrome is hypotonia or low muscle tone which makes the muscles appear relaxed or floppy and causes increased mobility between the joints.

Wade's ability to flex in uncommon ways has always amazed us. He could sleep very comfortably while doing the splits. He learned to sit up by lying on his tummy, splitting his legs open in opposite directions behind him and moving them out and around 180 degrees forward. I would have declared that was not a possibility until I saw my own flesh and blood performing it effortlessly.

And his talent for achieving karate moves while fastened in a car seat is becoming legendary. With all three boys sitting in a row, in seat belts and facing forward, I would never have thought I would be saying, "No, no! Don't kick your brother in the face!" Wade truly does that with great agility.

But as I watch him carelessly using his foot for a telephone, I am reminded of the greater implications of flexibility in our family life.

Having a child with Down syndrome has opened our eyes to the many different ways other individuals can view the world. If we want to have the richness of traveling new roads and gathering new experiences , we have to be willing to entertain the possibility of looking at life in new ways. The old rules may not apply to a new situation. Will we able to flex with the new or will we stubbornly keep trying to force a swimming pool to be a skating rink?

Case in point.

In our house, we don't do baby talk. Why teach your children one language only to have to train it out of them later on? So we routinely used ordinary adult language with our other boys and expected them to understand it. Body parts all had proper names from the textbook; appropriate behavior was discussed and assigned; when you had to go to the bathroom, you went to the bathroom, no poop and pee-pee here, thank you very much!

And then came Wade.

Wade had great bathroom skills with only one problem. He had difficulty communicating his needs. Yes, he did make the sign for "toilet", but I often couldn't distinguish it from other similar signs.

Finally one day out of sheer desperation, I realized that if he could say the letter P, he could also say.........................................................P, P! (!!!!!!)

So now in our house we go pee-pee very proudly.

And this morning, as Nevin and I were doing a LIVE television interview, Wade, sitting on Nevin's lap with his head right next to the cordless mic announced that he had to go "pee-pee".

And somewhere God is laughing.

Knowledge is Power

Never in history has there been a better time to have a child with Down syndrome. Medical advances have increased life expectancies; support groups and online communities provide helpful information in a private and non-threatening manner; libraries and book stores carry up-to-date resources developed from research on the best ways to teach children with Down syndrome. It's all there at our fingertips.

Today I'll share a list of some of my favorite books of the last four years. Woodbine House is a publisher specializing in books about children with special needs. They carry all of the following books, but I have linked the titles to Amazon because there you can read reviews and also click on each book to take a peek inside.

These first books have info on the best ways to help your child learn based on current research. I especially liked them because they were broken down into easy steps with photographs that I could refer to again and again. (Yes, these were the books I hyperventilated over at first. But you know better than to do that.)

Fine Motor Skills for Children with Down Syndrome

Gross Motor Skills in Children with Down Syndrome

Teaching Math to People with Down Syndrome, Book 1

Teaching Math to People with Down Syndrome, Book 2

Teaching Reading to Children with Down Syndrome

Helping Children with Down Syndrome Communicate Better

Early Communication Skills for Children with Down Syndrome

And when you've read all that and are geared up to be Therapy Parents of the Year, go and read this one for another side to consider. Taken together with the rest, it helps to balance out the need to go put your head in a paper bag and breathe slowly.

Disability Is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities

And to help spread out the worrying to make sure it gets shared equally, here's one by Dr. Brian Skotko concerning your other children without the lucky 47th chromosome.

Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters

After all that, you need some downtime to relax with the stories of some very beautiful families. Here are two resources I wish we had been given when Wade was born. The first is a book, the second a DVD along with a link to the YouTube trailer.

These resources highlight the gentle magic of that extra chromosome that so happily bewitches us all.

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Deedah

http://www.youtube.com/watch?v=vooCiGPr6O4

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!