Santa

Ian, of course, was a little bored by all the festivities...

For Meril

Down Syndrome Outreach Calendar

Okay, I'm lame, I'm only now managing to mention that Cooper is Mister October in the Down Syndrome Outreach Calendar for next year. Anyone want one?? In total lame-ness I can't even remember how much they are. Between $10 and $15 each. If you live in San Diego and want one, Chris can bring one down for you next Sunday if we know about it!

Lots of laundry happening in our house. Ian's cutting his first tooth, and has started to eat his first foods. So far he's had rice cereal, winter squash, and today he ate an entire avocado! To say he likes to eat is an understatement- he gets mad if you don't keep his mouth full of food at all times when he's eating.

Cooper's found a new fashion style, and has discovered whole carrots!

 
 
 
 

Halloween Pictures (Finally)

Visit with Nana (or, "Thank you, Allegiant Air!")

Allegiant Air has been such a gift for us, with their cheap, direct service to San Diego. Case in point was my mom's visit this weekend. Cooper was so thrilled to wake up Friday morning and see his Nana, and Chris and I were thrilled to have some "project" time. Chris has been building bookshelves for the boys, and I managed to dig through a bunch of stuff that we moved from our other house, but have not looked at since. We even got to have a date!

Here are some pictures from the weekend:

Farmers' Market













Cooper must have eaten a full serving of Pad Thai!



















The Fish Hatchery
The kids loved watching all the big salmon swimming.

A Treat...

It is 9 a.m. on Tuesday,it's rainy and stormy, and I'm doing something I haven't done in months- laying in bed. After being up from 3:30-5:30 this morning, Ian's still asleep. Chris is off today, and got up with Cooper about 7, and then brought me coffee & the laptop
(since we don't get the paper) about 8:45. What a treat.


Flashback to summer.




Two boys. One dragon.

The Progression...

Ian's decided it's time to sit up. He works pretty hard at it, and I'm amazed at how quickly he's getting stable. BUT he's still an early sitter, and there's a funny progression between upright and down.

 Upright
 Leaning
 Down

The Good, the Bad and the Ugly

So, Friday I learned a lesson- never stick your fingers into a wand blender before unplugging it. Yep- one finger in by the blade, the other hand on the power button- a BAD combination...So, a quick trip to ER, seven stitches and one very awkward bandage later, I'm on the mend- but these'll be short notes until I can use my fingers again...

Here are some great pictures from our outing to the Pumpkin Patch today with our friends Becka, Caileigh & Keagan.

Highlights from the Week

Ian's been working on getting ALL of his fingers in his mouth at once.






























A visit with our new friend Bronwyn.



























Thanks for the great Thomas puzzle Bonnie & Paul!


















Ian's first run.

New Tricks

It seems both of our boys have new tricks to share...

Ian's starting to laugh- he's been a pretty reluctant smiler/laugher so far- not that he won't, but he just wants you to really work for it. He's also doing a lot more tummy time without complaint- keeping his head up really high and trying to grab for toys. He had a run of nights where he slept for 12 hours straight, uninterrupted even by feeding. Now he's back to one wake up, and then right back to sleep. No complaints on our end.

Cooper's new tricks have to do with language. One of the things we're always asked in evaluations is whether Cooper asks questions. Until recently, Cooper really only had one question, "Whazzat?" Loosely translated as either "What's that?" or "Who's that?" to help him label things. In the last two weeks, he's started this one: "Doin'?" As in, "Whatcha doin', Mom?" I love it because it's so different from anything else he says or does. He's also starting to ask Where questions- particularly at naptime and bedtime, they're a great delaying tactic. As in: "Where's dolly? Where's Red Dog? Where's bear? Where's Elmo?" And on, and on, and on...Gotta love it.

We've signed Cooper up for a 2-3 year olds gymnastics class here in town. I've struggled with Occupational Therapy for a while now because, while the therapist we see is great, there is such high demand that therapists really don't see kids more than every two weeks, which doesn't feel that effective to me. So, I figured we'd try out gymnastics and hopefully combine more socializing with typical peers, with developing his gross motor skills. He was hysterical in his first class- adapting all the activities to his own level. The teacher, Hillary, had them do pencil jumps down the trampoline ramp (?) with their hands over their heads. Cooper's barely jumping in one place these days (lots of effort for those 4" off the ground!), nevermind jumping with forward progression. So after a couple of turns of jumping and falling down, he put his hands over his head and ran down the ramp. Hey, whatever works. I think it'll be a good match for him.

Last ones..

Sorry, it made me dizzy having both slide shows going at once!

More San Diego Pictures

I finally managed to get everything downloaded...We had so much fun with friends and family, and I loved taking Cooper to all of the places I enjoyed as a kid (and still do!)

Cape Cod

My new attempt to share far too many pictures...Cape Cod was a blast- lots of family time, and a ton of cousins!

Look out Cassidy

Here's cousin Cassidy checking out Ian. He thought Ian was pretty neat, but if you asked him if he wanted a baby at his house, he gave a solid "No!" Sadly, things will not go as he has planned this year...enjoy single child-hood while you can, Cassidy!

This I Believe

Driving today, this fell into my lap via our local NPR station. Not all of it is an exact match, but it's darn close.

**and a note from NPR this was recorded BEFORE Ms. Palin was recruited by McCain.
If you'd rather hear it, here's the link: .
I Am Capable of More Than I Think I Am

As heard on NPR's All Things Considered, September 22, 2008.

"It is Trisomy 21. It is Down Syndrome."

Beyond those words I heard nothing, sitting in the obstetrician's office. The doctor was talking about my unborn daughter, and the results of an amniocentesis. I know there were words after that statement, but I don't remember them. I do remember returning home with my wife and crying on the sofa. I distinctly remember saying, "I don't want this." I didn't want this situation. I didn't want this responsibility. I didn't want to become one of those parents—the parents of a child with a disability.

People told me, "If anyone can handle it, you can."

"Easy for you to say," I thought.

"God never gives you more than you can handle," they reassured me.

"Really? Then why do people have nervous breakdowns?"

"We'll help however we can," they said.

"Fine," I thought. "You have the kid with the developmental delay, and I'll help you out."

For months I was terrified. My wife Lucy and I now refer to the period of time leading up to my daughter's birth as "The Pit." We barely spoke to each other because we didn't know what to say. We simply suffered through each day, together, but feeling terribly alone. And then Genevieve was born.

She spent her first eight days in the neonatal intensive care unit at a regional medical center. On each of those eight days I made the 150-mile round trip to see her, because she was my daughter. I sat in a surgical gown in intensive care, holding her in a tangle of tubes and wires, singing the same songs I had sung to other daughters.

On the ninth day, she came home, and I began to realize that my feelings of fear and anxiety had changed in a way that that no prenatal screening could ever have predicted.

I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time—beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.

Genevieve recently turned three and is doing very well for herself. She runs and climbs on everything, and loves to wrestle with her two older sisters and her younger brother. She doesn't have a lot of spoken words yet, although her first full sentence turned out to be, "What's up with that?" She does have over 100 signs that allow her to ask for strawberries, pizza or ice cream, or tell us when she wants to sleep, or play on her computer. She goes to a regular preschool three days a week and seems to know more people around town than I do. I laugh every day because of Genevieve.

On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in Trisomy 21, Down Syndrome. Now when I look at those beads, they simply remind me that I don't ever know as much as I think I do, but I'm always capable of more than I think I am.


Gregg Rogers is an English professor at Pennsylvania State University. He spent 10 years as a writer, reporter and editor in New York and Los Angeles. Rogers and his wife host a website for other families with children with Down Syndrome in their area.

Independently produced for NPR by Jay Allison and Dan Gediman with John Gregory and Viki Merrick

Year to year...

Here are Calvin and Cooper. Calvin's mom, Leila, and I have been friends for 34 years now. Crazy. We see each other when we come to San Diego. I was thinking- the only people who've known me longer than Leila & her family are my parents and relatives.)

Fun in San Diego

The highlight of San Diego, of course, is seeing our family and friends, and particularly, getting lots of quality time with the grandparents.. We've been to the beach more times than I can count, Sea World twice, the Zoo, and multiple new parks. Cooper's getting really good at climbing (which I mostly think is a good thing...)

___
Hurrah for Nana!!
The perfect bathing spot for Ian. He's so funny right now- he can be really worked up, but if I pop him in water, he calms down immediately.
Picnic dinner on the beach with Nana & Pop Pop (and, Ian and I too). Cooper's gotten so comfortable with the water- he loves to run into the waves and "jump" over them (All six inches of them..) He's still pretty surprised when multiple waves come in and raise the depth of the water by a foot or more instantaneously. I'm always trying to balance keeping him safe with letting him learn how to balance in moving water and to stay respectfully cautious.
The new favorite activity: Helping. Help clean up the garden, help get the newspaper, help get things for Baby Ian...all good things. (and Nana got her garden cleaned up, too!)
___












A trip to the Zoo with Grandma Diane and Grandpa Tom. Cooper was enthralled with the Rhino, who was sitting in a pool. Cooper kept talking about him having a bath!

See the big orangutang on the other side of the glass?
Oh, did I mention the wanting to climb everything phase??




"I'm so amazed at this elephant I have to sit down!"

Acceptance...

One of the things that stands out most to me, in thinking about Cooper and what I want for him in life, is the issue of acceptance, and equally, respect. For years "retard" has been used as an insult, "retarded" as a description of something stupid, or not right. Of course, now I've got this kiddo who fits the category of "retard" and, in the way of things, my awareness of the impact of the word "retard" has changed.

This post includes an ad by Special Olympics supporting the "Ban the R word" campaign, as well as some much overdue information from the national Down syndrome Organization that is well worth a read.

I know that some of this may seem like just a matter of semantics, but when you think about a group of people for whom acceptance is not a guarantee, semantics matters.



Below are tips for the proper use of language for ‘Down syndrome’. The National Down Syndrome Society and the National Down Syndrome Congress encourages all media to use the below language:

• Down vs. Down’s. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome” as well.

• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

• Down syndrome is a condition or a syndrome, not a disease.

• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.

• It is clinically acceptable to say “mental retardation,” but you may want to use the more socially acceptable “cognitive disability” or “cognitive impairment.”

Down Syndrome Myths and Truths

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.


Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

For more information visit: www.ndss.org or www.ndsccenter.org

Cooper & Ian at 6 weeks

 
 

 
 
 
 

Berry Picking with Nana & Kati