Wednesday, May 30, 2007

Picnic Day

Today was Amandas school picnic. The theme was Cruising, and the staff had worked so hard to make everything seem like you were on a cruise. They transformed the garden on the school campus to be a cruise ship...all aboard!
We set sail, on a mildly warm...ok somewhat only felt hot if you were moving.....
It began by you walking through a doorway with streamers hanging down, blowing the the wind.
You came onto the main deck with a "bar" where you could make your own pina coladas (ok we are talking preschool here, so they were kid friendly pureed drinks with ice). There was a pool where you could stick your feet in to get wet...probably the only time of the year that you were allowed to go in the fountain (a real fountain that they have in the corner of the beautiful garden on the campus of the school). Once 'on board' with a cool drink in your hand you could make your own cruise hats...Miss Amanda made herself right at home...being the cruise director, followed by she made her rounds waving hi to everyone in the area....

Picking out a hat and having one of her teachers, Miss Nina personalize it, complete with pink dots!I think it rather makes her outfit, don't you?
Ahhh....the best part for the kids (or maybe the adults?) was the pie throwing. They had a pull string pie thrower that the kids could pull on the magic key and the whipped cream pies would fly across to smack the teachers on the face. The teachers wear goggles, and get to spend the rest of the with whipped cream in their hair...Fun! The teachers are so kind...they MOVE to make sure they get hit! What fun! I think the staffers had as much fun as the kids did! Here's one, with a pie ready to hit its target...DUCK!
They finished the day out by heading inside the building to an air conditioned all purpose room to have a wonderful lunch (you should have seen the spread...hamburgers, spaghetti, salads, fruits, cookies...the works, like a beautiful buffet you might see on a cruise) and watch The Little Mermaid and hang out for a while. It was so nice to see all the kids playing and socializing (especially my busy body...Peanut made it her job to check out what everyone was doing, eating, even the buffet down the hall was not outside her scrutiny).
I think everything passed! She had a blast and I was thrilled to be able to participate....What an amazing, talented staff the school has...I wonder what the theme will be next year?

Tuesday, May 29, 2007

Memorable Memorial Day

Hi there everyone! Peanut is so glad you stopped in to see how our weekend was. She hopes, as we do, that you had a great weekend too.
This weekend on Memorial Day we had my parents and siblings over for a big BBQ. We had the cows running for the hills (my apologies to any vegetarians out there). We had ribs, burgers, hot dogs, steaks of everykind imaginable. Lots of MEAT. Funny thing is my youngest sister is a supposed vegetarian...she ate lots of meat, I guess everyone needs a vacation every now and again.

The boys got up early to go fishing on Sunday (see my husbands post on his blog, called Gone fishing :

We girls stayed home and hung out cleaning house,doing laundry, and shopping, of course!

Peanut cooled off with an ice cream cone, and polished the whole thing off on her own, no assistance that's MY girl! She signed ice cream, and then signed please! What a polite little girl I have. Funny thing is that when she was doen eating her cone, what does she sign..."MORE" of course!

She ate it so nicely, with little spillage...can you tell who has been in therapy for too long? I gues that kinda comes with the whole package. I wonder If I can apply for that honorary masters in OT, PT, DV and speech...wouldn't that be nice? I'm sure anyone with a child with special needs feel that they too should get an honorary degree in whatever specialty that they have had contact with...let's start a movement...all for it say 'aye"....

After the ice cream, it was time to cool off in the pool of course. Siblings James and Ellie enjoyed too...of course Alistair is hanging out in the background, as usual, trying to make his way over...he is getting so close to moving. At 5 months I am amazed as Peanut did all this later. You forget when and how quickly they do things...

Hope you hade a great weekend. We did.

Tuesday, May 22, 2007

I'm Waiting.....

Miss Amanda has a new routine for getting ready for school in the mornings. She has the habit of getting up, dressed, teeth brushed, hair done...all rather quickly while trying to run to the gate to go down stairs. I hurry up and get all the other kiddos and myself dressed cuz Peanut is banging down the gate...trowing things down like shoes or brushes, trying to make us all move a little faster. Once we make it down stairs, she heads to the kitchen to stand in front of the fridge and 'Uh, uh...Uh" pointing at the fridge. What could she possibly want from there...I know she's hungry, but every morning, without fail...I know she looks so deprived ;) Anyway, I open the fridge and she trys to climb in there. The funny thing is that the door almost closes with her in it...we have to really be careful. What does she want? Of course we can't forget her lunch box! She hauls it out, and practically runs to the front door where she stands, waiting to go to school.

In fact, she gets really REALLY mad when I take her back to the kitchen to eat breakfast. Funny girl, she just loves school so much that she can't wait to get back!

I cannot tell you how relieved I am! She is my first kid who has gone to school without putting up fights, tears and tantrums. This I can handle...this ready to go NOW!

I wonder how she will react when I tell her she can't go to school tomorrow? She is not going to like me.

Ironically, my Elle, is quite the opposite, begging to stay home, even feigning sickness to stay home...I'll take the 'I'm waiting, hurry up mommy" Any day.

Now if only she would TELL me that she wanted to go..... ;) I guess we have something speech can work on...
And it is really REALLY important that we not forget her special pink with stripes lunch box.
She carries it into school like a badge of honor. Even "shopping" with it in school. My little one takes her shopping cart complete with said "purse" and shops her way to eat her morning snack after stopping to share a toy or two with one of her new friends.
Ahhh...behold the power of pink!

Monday, May 21, 2007

Thrill of the Chase

My husband came in looking for Amanda's toothbrush, so she could get ready for bed. "Honey, where's Peanuts toothbrush?". Nursing Alistair, I proceed to respond, "it's where we always leave it when we are done brushing our the bathroom. I think?" Hmm...that is a good question, I am pretty sure I put it back when we were done brushing our teeth this morning, but it was such a long time ago and so much has happened, who knows?
B leaves, and comes back empty handed. "Peanut where is your tooth brush?"
She looks at us and smiles walking out of the room. B follows her, and you can hear stuff being shuffled around in the other room. Once again, B returns empty handed.
He starts picking up laundry, looking under the bed, lifting the bed cloths looking for that elusive tooth brush. The one that grew legs and ran away right after Amanda finished brushing her teeth this morning. B opens the drawer to the night stand, pushes aside some books...still no tooth brush.
By now he is starting to get a little irritated. Still nursing the baby, I smile and offer some words of encouragment, " find it yet? How hard is is to find her tooth brush?"
Pushing aside the top of the clean laurndy that is stacked up waiting to be folded - pulling the basket away from the wall....AHA! The elusive tooth brush is found! "See honey, right where we always keep it!"
B gives me a dirty look...I smile.

Friday, May 18, 2007


When I drop Amanda off to school, she has a big smile on her face. In fact she likes to stand waiting by the front door holding her lunch box ready to go to school. When I go to pick her up, she comes out with one of her teachers with a big big BIG smile, still grasping her pink lunch box.
She carries it around in school, "shopping" with the shopping cart.
I am so glad that she is enjoying school. What a releif!

Wednesday, May 16, 2007

The Last of the Great Over Achievers

Well, as you get older and realize that life itself is more important then grades, that is when a "C" is the best grade ever. Before this term I would have been very disappointed in my "C", I have grwon up. Now that "C" is a badge of Honor. I got a "C" in Chemistry II, having gone back to school with a three week old baby, and continuing to go to class until last week, finishing the term with a very sqwuirmy 4 and a half month old. I was sleep deprived, brain dead and heading toward the psych ward part way through the term, thinking I would never make it. But...I did it. Not the best of grades, but I did it and I am proud of it.
Now I can focus on my kids and house for the next two months before I disappear into the depths of medical studies....At that point a "C" will no longer be acceptable. I will have backslide into my old world of youth...where A's count and B's are ok...who says we have to be old forever? Besides I can be young without Botox!

PS I still say that that mean wicked CHEMISTRY II teacher refused to give me my B because she wanted to prevent me from getting into my program...see we started the class with 25 students, only 9 of us were left to take the final. Everyone else dropped the class. Honestly, I thought about it. Dropping the class that is, but I decided to hang in their and just do my best. So I did. I lived, ate and breathed CHEMISTRY every waking minute that I wasn't in therapy with Amanda I was doing CHEMISTRY. When I was in therapy with her, all I talked about was CHEMISTRY. It was very, very sad that my life revoloved around CHEMISTRY. If I see the word CHEMISTRY again, it will be all too soon. Funny thing is is that people say my Hubby and I have a lot of CHEMISTRY...AAARGH!!!!!

PPS I got a B in genetics...My little angel, who happens to have Downs syndrome taught me everything and them some!? My B proves it...YAY!! Thank you precious Amanda...thank you.

Wednesday, May 09, 2007

New York Times Article on Down Syndrome

This is in today's New York Times Newspaper:

May 9, 2007
Prenatal Test Puts Down Syndrome in Hard Focus
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.
“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”
Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.
Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.
About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.
Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.
They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call” network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.
The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
“We want people who make this decision to know our kids,” said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.”
The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.
A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.
“The impact of these changes on the Down syndrome community is going to be huge,” said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.
The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.
“There are many couples who do not want to have a baby with Down syndrome,” said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.”
But the richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.
With no formal financing or organization, parents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results. Medical professionals have for the most part responded with caution. Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision.
Their goal, parents say, is not to force anyone to take on the task of parenting a child with disabilities. Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics.
“For me, it’s just faces disappearing,” said Nancy Iannone, of Turnersville, N.J., mother to four daughters, including one with Down syndrome. “It isn’t about abortion politics or religion, it’s a pure ethical question.”
Others admit freely to a selfish motive for their new activism. “If all these people terminate babies with Down syndrome, there won’t be programs, there won’t be acceptance or tolerance,” said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. “I want opportunities for my son. I don’t know if that’s right or wrong, but I do.”
Ms. Brown has taken it upon herself to serve as a community resource on Down syndrome for prospective parents. She was encouraged when a counselor at the University of Washington Medical Center sent her an e-mail message recently with a question from a patient.
What developmental age equivalent, the patient wanted to know, do most people with Down syndrome reach?
For parents on an e-mail list where Ms. Brown solicited answers, the question underscored the difficulty in conveying the pleasure of parenting a child with Down syndrome to someone who has the option to reject it.
“Verbally,” wrote one mother of her teenager, “she’s at a 6-month level, but what 6-month-old do you know who can climb out a window and dance on a roof?!?!? We joke that she could climb Mt. Everest.”
“If someone had told me Sam would still be in diapers at age 5 — ugh — I probably would have died,” wrote another. “Living through it, not such a big deal. Because you don’t give birth to a 5-year-old, you grow with and love this kid for five years.”
Doctors have long recommended an amniocentesis test for pregnant women 35 and over, whose age puts them at greater risk for chromosomal defects. But because it carries a small risk of miscarriage, it has not been routinely offered to younger women, who give birth to the majority of children with Down syndrome.
Now, with a first-trimester sonogram and two blood tests, doctors can gauge whether a fetus has the extra 21st chromosome that causes Down syndrome with a high degree of accuracy and without endangering the pregnancy.
But many parents see expanded testing as a step toward a society where children like theirs would be unwelcome. The Newsweek columnist George F. Will labeled it a “search and destroy mission” for a category of citizens that includes his adult son, Jon Will.
Dr. Brian Skotko, a medical resident who has studied how mothers were told of prenatal diagnoses, found a high level of dissatisfaction. He said that most doctors have little or no training on how to relay a prenatal diagnosis of Down syndrome.
When he talked to obstetricians, geneticists and medical students at Massachusetts General Hospital in Boston about the subject last month, though, he was questioned sharply.
One doctor asked about studies suggesting there is a higher risk of early-onset Alzheimer’s disease in people with Down syndrome, potentially saddling parents with another caretaking burden as they themselves age. Others take issue with the notion that they do not give parents a balanced portrayal of the condition.
“It’s a mistake to say ‘your baby is going to be mentally retarded, you should have a pregnancy termination,’ ” said Dr. Allan Nadel, director of prenatal diagnosis at the hospital. “By the same token, I don’t think it’s quite fair to say ‘these are wonderful lovely human beings, you can deal with all of their problems and it’s not that big of a deal.’ We strive to have the proper balance.”
Parent advocates have some advice: don’t begin with “I’m sorry,” or “I have bad news,” as many of their own doctors did.
Weeks after Patricia Lanter decided to continue her pregnancy, having learned that Down syndrome had been diagnosed in her fetus, her doctor reminded her that she could still get an abortion in Kansas if an ultrasound indicated the baby would need heart surgery. Ms. Lanter, an emergency physician from Norwich, Vt., has secured an invitation to lecture the obstetricians in her hospital this summer.
In Wilmington, Del., Kristin Pidgeon recalled her doctor’s gloomy forecast for a local hospital audience: “She may be able to count change for the bus,” he had said of her as-yet-unborn daughter. “But what’s going to happen when the bus doesn’t come?” (Her daughter Aliza, now 5, does not yet take the bus, Ms. Pidgeon said, but she does ride horses as part of her therapy.)
In the Detroit suburbs, Ms. Talbot is still working out the best strategy to drive her points home to medical professionals. When one doctor suggested she had chosen to show them only “high-functioning kids” like Sarah and her own daughter, Megan, she asked Trevor Taylor, who lacks the ability to communicate verbally, to join the lineup.
At the Henry Ford visit, Mr. Taylor, 19, a natural ham, acted out his speech as Megan, 18, read it, before hitting the music and signing along to “What a Wonderful World.”
At the end, he blew a kiss to the audience. Then he hugged his mother.