SAL-VA-TION: by grace

E-LEV-EN: children from 1984 to 2006

HOME-SCHOOL-ING: since 1990

DOWN-SYN-DROME: susie and gabe

GRAND-CHILD-REN: since 2010

FAITH-FUL-NESS: my steadfast rock, my biggest supporter, my leader, my friend, my love, my husband

Monday, October 27, 2008

It's that Season!

Every year, on the day of the first real snow fall--big flakes falling and coating the ground--we put on Christmas music. Last year that didn't happen until December. Today, October 27, we were all humming along with holiday tunes while we got our morning jobs done. No one complained about the jobs, either.

I love the Christmas spirit. Everyone finds it enjoyable and desireable to be cheerful and kind and they willingly adopt what should always be the "Christian spirit".

Monday, October 20, 2008

Science, sort of

Bryce and Owen are studying animals and today we were learning about insectivores, insect eating animals.

At the end of our lesson I was quizzing them and asked, "A bat is the only mammal that can do what?"

Bryce answered, "Hit a baseball."

Thursday, October 16, 2008

Political Perspectives from Aunt Susie

Following is a conversation that Aunt Susie and I had about the election yesterday.

Susie: Who are you voting for?

Me: First, you tell me who you're voting for.

Susie: I'm voting for Cain!

Me: Why's that.

Susie: Because he's going to raise taxes.

Me: Really, that's what you like about him? Anything else?

Susie: I like where he stands on the issues.

Me: Which issues are those?

Susie: Well, for one, he thinks that all people have the right to vote, black people and white people.

Me: I'm pretty sure Mr. Obama thinks the same thing. (Note: Although if you track his connection with ACORN you might suspect his support of the rights of whites to vote....) So, tell me Susie, what don't you like about Mr. Obama?

Susie: He's going to lower taxes.

Me: So, you like Mr. McCain because he's going to raise taxes and you don't like Mr. Obama because he's going to lower taxes. Why do you want to raise taxes?

Susie: Because then we'll have more money for our group home!

Spoken like a true self-preservationist.

Wednesday, October 15, 2008

Temper tantrum

I was tired. I'd been away from home for two days. Gabe wouldn't nap away from home. I'd spent six hours walking around the Mall of America amusement parking carrying Gabe. I'd spent more than an hour walking around Cabela's holding Gabe. He weighs twenty-six pounds and it's carry or chase.

I was tired. I'd been stuck in traffic and had been late for Aunt Susie's annual meeting. I'd been in a vehicle for more than eight hours with our youngest half and still had a few more to go. I had given three warnings in 30 minutes to "stop screaming" (even when it's play it's piercing). I was helping Aunt Susie out of the van for a bathroom break and Gabe was trying to escape.

I was tired. I was calling for help. Gabe was diving out the door to me. I was calling again. No one was answering. Susie was waiting. I was repeating myself. I was getting frustrated.

So what did I do? How did I graciously, effectively, and with seasoned maturity handle the situation? I lost it. I lost my cool.... completely. No patience, no tenderness, no longsuffering. I yelled, "Fine, I'll just walk the rest of the way home!" And, right there in the parking lot, for good measure I stamped my foot. Everyone shaped up immediately. I think I just shocked them into it.

Tired or not, I still cannot believe I stamped my foot.

Friday, October 10, 2008

DS Awareness Month--Post #2

Susan Rose

In 1954 there were no prenatal tests, no ultrasound markers, not even the diagnostic term "Down syndrome". Susan Rose's parents, Emery and Lydia, and her four older siblings (ages 14-21) had the same expectations for her that any family had for their newborn child. This was undoubtedly to Susan's advantage. When Susan didn't start to crawl, or walk, or talk quite as early as most babies her siblings started asking, "Do you think something's wrong with her?" Her mother Lydia always said, "She's fine, she's just a little slow."

Doctors eventually diagnosed Susan as "a mongoloid", then later identified her as having "Down syndrome" and through it all told her mother that "the child is most certainly mentally retarded". Lydia scoffed, said the doctors didn't know what they were talking about, and insisted that, "Susan is fine, she's just a little slow."

Susan learned to walk and talk. Lydia put her in school where she learned to read and write, add and subract. Sometime in the mid 1960s the "experts" won and Susan joined the special education classes and was steered into being trained for manual labor. She was never satisfied with the work, and always preferred the company and conversation of the staff to that of her fellow classmates. And Lydia continued to contend that she was "just a little slow".

After the deaths of her parents, Susan went to live in a group home. Today she enjoys sharing her home with three other women, including her best friend Joan. The two are die hard Elvis fans who love to watch old movies together. She spends her days in a senior day program for older disabled adults. She loves to visit museums, attend concerts, and participate in cooking and art classes. She tells me that she is finding out she has natural artistic ability and is working on a painting. Her best friends are still the staff and program directors.

The most difficult chapter in Susan's life came while she grieved the death of her parents. Without her mother to advocate for her being "just a little slow" her depression and grief were misunderstood to be a part of her handicap, as if someone with developmental disabilities also had emotional disabilities and was not expected to deal with a personal loss like anyone else. Susan was put in a day facility for severely handicapped individuals that offered more of an asylum atmosphere than anything. She began to exhibit agressive and defiant behaviors that led to psychiatric evaluations and medications. When she was finally removed from the facility her deviant behavior stopped, completely.

I know Susan better as "Aunt Susie". I am her niece and I am only eight years her junior. I remember early on looking up to her, later associating with her as a peer, and eventually (when I learned that her aging siblings were unable to assist her) becoming a guardian. Susie loves her family above anything and anyone. She knows the month, day, and year of everyone's birthdays and anniversaries (4 siblings, 12 nieces and nephews, plus aunt, uncles, and cousins). She keeps up with the great nieces and nephews working to memorize the new generation of names and dates, and doing a fair job of it.

Susie has defied all expectations. Had she been diagnosed with Down syndrome at birth she would not have been expected to reach adulthood. When she was 26 she had passed her then life expectancy. And at 54 she is at the peak age of life expectancy now for someone with ds. Believe it or not, there are still physicians today who tell parents that their child with Down syndrome will never walk, talk, read, write, or live a meaningful life. Susie has done all of those things.

So, thanks to my Grandma Lydia, when my son Gabe was born with Down syndrome two and half years ago I was able to say with confidence, "He's going to be fine, just a little slow."

Thursday, October 9, 2008

"Big Helpers"

When our small children make an effort to pitch in we put on our talking-to-little-kid-voices and ask, "Are you being a big helper?" The help usually comes by way of emptying drawers, flinging laundry around the room, mixing up shoes, and doing other very nonhelpful sorts of things.

A few days ago I asked two of my teenage boys to move the furniture out of a bedroom so that I could paint.

When you move a dresser to a new location wouldn't you just naturally figure out that it will need to be used? Especially the dresser for a two-and-a-half year old who sometimes requires several clothing changes in a day.

This is what I got from my "big helpers".

Wednesday, October 1, 2008

Super Hero

This is Homecoming week at RHS and today is "Favorite Super Hero Day". Here's Dana in costume.

She's going as Chet.

DS Awareness--Post #1

Last Saturday we attended our sons' football game at Grand Valley near Grand Rapids, MI. Gabe had slept through our pregame picnic supper so I'd filled two styrofoam cups with potatoes 'n carrots and pumpkin pie. As I walked through the entrance gate with Gabe in one arm, the cups in other, sweatshirts slung over my arm, and a diaper bag on my shoulder, a woman informed me that,
"No food or beverages are allowed in the stadium."
I pleaded,
"But this is food for the baby. He hasn't had supper and they don't really have appropriate food for him at the concession stand."
She looked up at him, grinned, pointed a few yards away, and replied,
"Well, that's my daughter over there so as far as I'm concerned you can bring in anything he needs."
I turned to see an older teenage girl with Down syndrome taking tickets where another line formed. In we went, with Gabe's supper.

That extra chromosome helps us make connections with people everywhere we go.

October is "Down Syndrome Awareness Month"

I was never aware of this. But that's typical, when we're involved in something we are aware of everything that touches us concerning that thing. Because of Gabe, I am very aware of things that have to do with Down syndrome. I have not made this blog be "about" any one thing. It's meant for my family and friends to keep up with me and mine. It's about Gabe and Lisa, and the boys, and the teens, and homeschooling, and football, and Down syndrome, and whatever else happens along the way.

But this month I want to try to focus a little bit on things that are specifically related to Down syndrome, to share and educate. We'll see what happens.

"They Say"

"They Say" that customer service isn't what it used to be. Really?

I just submitted an online order to Walgreens Photos.
I checked the box for the store I will use for pick up.
I had two choices for pick up times, 11 AM or 2:30 PM, Oct. 1.
I'm in no hurry. I chose the afternoon.
I submitted the order.
A warning appeared in red. "The pick up time you selected is no longer available."
Fine, I thought, I'll pick them up tonight, not a problem.
I read on, "Your order will be available at 10:30 AM, Oct. 1."
That's even earlier than the original morning time I was given.

As my mother-in-law alway says, '"They say" are the biggest liars there ever were.'