World Down Syndrome Day

Today is March 21, World Down Syndrome Day.

From the International Down Syndrome Coalition for Life comes this wonderful video which includes a picture of Wade.

As you watch it, celebrate Life with us!

Whoever welcomes one of these little children in My name welcomes Me.    Mark 9:36

Great Expectations

"But why," said Randall, completely bewildered, "why would anyone want to cure Down syndrome?"

At one of our last support group meetings, the discussion touched on the possibilities of current scientific research which will be able to map out that extra chromosome and its blueprint for our children. 

"Who knows!" said Chris, "I might be the one to figure it out, just like Randall might be the one who discovers the cure for cancer!"

Four years ago, I may have been more excited about such possibilities.  Today, however, I find myself lagging in enthusiasm when it comes to "cure-all" remedies for my son with that lovely extra chromosome.

For, hand-in-hand with the idea that he needs to be "cured" comes the ominous medical breakthrough of a non-invasive
prenatal blood test which will diagnose Down syndrome with deadly accuracy.

Deadly, because there is a demon lurking behind this medical "advancement"---a demon who peers out behind the words of a researcher from the Institute of Neurology and Genetics in Nicosia.

"The cheaper and quicker method of blood sampling rather than collecting fluid from the womb will encourage more couples to take the test and therefore slowly eradicate the disease. There is no cure, so this is a test for couples who want to know and prevent it.  It...can identify Down syndrome in the 11th week of pregnancy, early enough for a woman to end her pregnancy if she chooses."

---Philippos Patsalis

I don't know you, Philippos, but I'm sad that you choose to label Down syndrome as a disease that needs to be cured.  And I pray that somehow, somewhere, someone with Down syndrome will find you and love you until you know, as I do, that, indeed, there is no cure needed for this wonderful anomaly that makes our world beautiful.

For, wonderful though it may seem to be the Potential Mother of Future Scientists Who Discover Great Cures, I find it more wonderful still to be the mother of a little boy who, like nearly all others in his family of 47 chromosomes, has been given the cure for Hatred.

Great would be the scientist who could isolate the gene for loving others the way they should be loved.

And that, Philippos, would be the cure we all need.



If Down syndrome is a disease then the world needs to catch the symptoms and spread them quickly — unconditional love, purity, innocence, honesty, and an incorruptible spirit of Light!  ---Kurt Kondrich, (dad of Chloe, age 7, who belongs to the race that knows Love)

Yeah, Right...

"But, Mom," Randall protests, "Angry Birds is beneficial. It helps to develop eye/hand coordination."

(Sorry, Randall, I don't think it was written into your OT goals. Too bad.)

A Week with Wade: Sunday

Wade is delighted to go to church on Sunday!

He started going to Sunday School in September and loves his teacher Diana.

Wade has a verse to learn for Sunday School each week as well as a verse for Bible Play School.  He can read the verses, so I make copies each week for him to practice both here at home and in therapy.  We put all the old verses in an album and continue to read them for extra practice.  

He has not been able to say any of  the verses by memory though until this week.  As if he knew I was blogging about him this week, he chose to say his Bible verse from memory for the first time!  That's a huge milestone!

It's been a good week and we're ready to start another one!

A Week with Wade: Saturday

Saturdays are music therapy time with David.  Wade loves Saturdays and David and music.

The Hello Song

He's got rhythm!

When Nevin runs the sound systems for various events, he's always complaining that people don't get close enough to the mic. Do you think Wade is close enough to his mic?

Parachute time--can you shake it up and down and walk in a circle at the same time?

David started Wade on the piano in the fall.  The notes of the song are printed in color and there are corresponding colored stickers on the keys.  He has also now learned which fingers to use on what keys.  I have been amazed at his capabilities on the piano and have to thank David for keeping my expectations high enough.

Wade also plays the same song on colored hand bells, using the correct fingers.  The ring finger is a difficult one.

The rest of today we spent with more Beloved People, celebrating Grandma Evelyn's birthday with a picnic.

A birthday party wouldn't be complete without Grandpa.

And then there were more Beloved Aunts and Uncles...

and cousins.....

.....and cousins......

.......and more cousins!

And what about a grubby little boy kiss for a sweet girl.  Awwwww!

The weather was perfect, the turtles were charming, and the alligator tried to ignore us.

We wish Grandma had birthdays more often.

A Week with Wade: Friday

On Friday, Wade has no school or therapy.  So it's Mommy Time all day.  Hurrah!

The activities we do reinforce his therapy goals and also introduce other skills he is ready to try.

He can work on many of his goals just by helping me around the house:  following directions, understanding prepositions, learning sequencing of events, and talking about whatever we are doing.

So Wade happily helps to empty the trash, unload the dishwasher, set the table, put away his clothes, and run all kinds of errands.

He does a pretty good job of dressing himself with a little assistance.  Buttons are still difficult.

Each day, we talk about the month, the day, and the weather (printables from Sparklebox).

 Recently Wade has become very interested in time, so I introduced the clock to him with flashcards. Issues relating to time can sometimes be difficult for children with Down syndrome.  Five minutes might be an hour or an hour might be 5 minutes.  So I decided to seize this window of opportunity and introduce time early while he is interested in it.  If talking about clocks and pointing out daily schedules helps his sense of time to develop, then that's great.  If not, we haven't lost anything by learning about something he enjoys.  At the very least, he'll be able to read the time, and that will give him a sense of accomplishment.

(Have you ever thought of what a heavenly concept it is to have no sense of time?  At the end of time when "time shall be no more" we will all attain the ability to have no sense of time.  Won't that be nice?)  

I like these printable play dough mats from Childcareland.

I've been working with him on the skill of spotting, or being able to recognize how many items there are without actually counting each item.  These printable flashcards from Teaching Math to People with Down Syndrome are ideal for this.

These puzzles are great for working on cardinality (last number counted is the total).

We've also been working on reading the numbers from 1 to 100 (chart from Sparklebox).

Wade loves using this skip counter from The Toymaker.  You insert the number strip into the counter and then move the strip up as he counts so only the current number is visible in the round circle.

Then we practice skip counting again using actual money.  He was already introduced to skip counting and counting money on More Starfall, so again I'm just building on his current interests.

Music is a great part of Wade's day.  Today he was enjoying his cd a bit too loud and I told him to turn it down.  A while later I began vacuuming in the living room where he was still singing along with the music. Pretty soon, I noticed him behind me with his hands over his ears frowning at the vacuum cleaner and saying, "Too loud!!"

It totally made my day!

A Week with Wade: Thursday

No therapy on Thursdays, so he gets to be at Bible Play School all morning.  Today is Prince and Princess Dress-Up Day.

Wade goes as Prince Charmin'.....

....with a toilet paper cape.

Prince Charmin' and Princess Sandra

But even a prince gets sleepy....

...and sometimes a prince even cries.

But all he needs is a little Mommy Magic...

....and a bit of Brother Magic....

...and he's all better again, in a princely sort of way.

And then we went out and climbed mountains....

and found Spring.

A chat with Dad....

....and a vertical sunset.....
make a royal ending to the day.

A Week with Wade: Wednesday

Wednesday's schedule is a repeat of Tuesday's with early morning therapy.....both speech and OT

Bible Play School....with Miss Sandra, another One of the Adored (are you beginning to see a pattern here?)

Naptime....

Mommy time.....tracing and writing

Brother time....piano duet--why one of the duo was shirtless remains a mystery

Laughter duet

Daddy time--best way to end the day

On these mornings of early therapy, I drop Wade off first and then take the other boys back to school.  During their longer early morning ride, the boys usually take the current book along that I'm reading to them at bedtime and Randall reads aloud to Christopher which entertains them both.

It also eliminates endless discussions/disagreements on which highway in the sky the birds use most, the possibility of another snow day--SLUG BUG!!!-- and who saw the deer first.

But this morning they forgot the book.

And then Chris made the mistake of asking how salt works to kill a slug.

Randall happily spent the rest of the way explaining all about possibilities like a sponge soaking up water, and salt water propensities, and how you shouldn't drink the ocean, and how you float on the Dead Sea because salt water is denser than humans, and how if let's say You were standing here beside a Liquid You and you both melted into a bucket, the Liquid You would be heavier than You,  and how if you catch a live fly and tear his wings off and drown him and then take him out and put salt on him, he'll live again, because Eythan said so, only we tried it one time two years ago and it didn't work, maybe we put too much salt on......(and on....and on....and on....).

And all I can say is I hope his teacher had ear plugs on the field trip today.