Saturday, February 28, 2009

Busy Bee's Birthday

My daughter who I call,Busy Bee,is 10 years old today.She has such a wonderful and "Busy" personality.I wish I had been so outgoing as a child!She doesn't have a shy bone in her body:)
She is an excellent sister to Ruby,always wanting
to hold her,entertain her and love on her.

Thursday, February 26, 2009

Ruby's portrait

My 17 yr.old son drew this picture of Ruby in her Bumbo.

My sister was a teacher's aid

Two years ago my sister started working as a substitute teacher and on one of her assignments was placed in a special ed class, at a high school ,with severely handicapped children.While she was there the first day one of the kids had an accident and had to have his diaper changed.My sister insisted on helping to get him cleaned up and changed.The teacher of the special ed class asked if my sister would be willing to come back and be an aid and so she was an aid in the class for the past two years.My sister loved it there,she loved the children.I'm sad to say she had to stop working as an aid this school year and get a better paying job so she could support herself and her kids.
When I had Ruby I asked my sister if there was anyone in the class with Down syndrome.She said there was one girl with Ds in the class and that she had to be watched very closely because she would try and harm herself and the kids that were in wheelchairs that had limited movement and speech.This scared me when I heard it but then she told me that this girls parents were both attorney's and lived a couple hours away.They had placed their daughter in a group home because they were embarrassed of her.This girl has also been sexually assaulted.When I learned all of this it made me angry and I thought no wonder she acts out and bangs her head on the wall and tries to harm others weaker than herself.It makes me angry at her parents that they wouldn't want to protect her and love her or find a family that would.I can't stop thinking about her.
There is another girl with Ds in this school she lives with loving parents and she has all of her classes with her peers .

Wednesday, February 25, 2009


Term of the Week - High-Functioning, What Does It Really Mean?By Kathleen Fergus,
Saturday January 24, 2009
This weeks term of the week is actually a bit of a cheat, as I was unable to find a concise definition of what "high-functioning" actually means in Down syndrome.
I have heard the term high-functioning used to describe individuals with many different disorders - autism, dyslexia and Down syndrome to name a few. In the interest of getting of clearer picture of what exactly this term means in individuals with Down syndrome, I attempted to locate a clear-cut definition of what this term means. While this phrase is commonly used to describe some individuals with Down syndrome, I was surprised that there is no formal medical, psychological or other criteria defining exactly what makes a person high-functioning. I was also surprised (although I shouldn't have been) to find that some parents object to this term.
In it's common usage, high-functioning refers to someone that is performing above what would be expected of them. Thus the term is actually a comparative term and rather subjective (or based on someone's opinion). It can also be a somewhat simplistic term in that it tends to have an "all or none" connotation - that is a person is either high-functioning or not. In reality, most people (with and without Down syndrome) have a mix of skills and abilities and may be high-functioning in certain areas and not in others.
Some parents of children with Down syndrome (and parents of children with autism) object to the term because they feel that it is far too subjective and often is actually a reflection of society's poor expectations of people with Down syndrome rather than a reflection of the individual's true abilities. Other parents object to the term because it places more value on individuals thought to be high-functioning as compared to individuals that are not thought to be high-functioning.
How do you feel about the term "high-functioning?" Is the term meaningful to you? Would it be more meaningful if there were actual criteria and definitions assigned to the term or am I over thinking this? Let me know what you think!

Wordless Wednesday-Hey,it's my turn!

Monday, February 23, 2009

What do you say to the 'R' word?

I noticed a couple of other bloggers have blogged about having to deal with the 'R' word.I attended a womens breakfast on Saturday and a young woman in her 20's commented on something being"So retarded." I didn't say anything to her and I thought of all my bloggy friends and wondered what would some of you have done?So,what would you have said and when?

My soccer post

After thinking about my previous post I started thinking about some good things that might come from soccer practice and games.I took Ruby to my 14 yr old daughters practice yesterday and she seemed really interested in all those girls running around.Ruby is a people person even her PT noticed this about her,she would rather play with people than toys,maybe she will enjoy all the people at the games and maybe all the noise will be good for her.I know I said I was worried about what people might say but we have met a lot of very nice people in soccer who will probably say some pretty nice things and in fact some already have.I can protect her from the weather and maybe leave her with her granny on days it's too hot out.So,I'm going to stop my grumbling and look for the good things!


I'm just not looking forward to soccer,it's so much work getting everybody to practices and games.My husband coaches and he gets so into it and it takes up a lot of his time.I always feel second to soccer during the season:) Plus now I have Ruby to worry about,I worry about the germs she will be exposed to,the weather and will she be able to handle it,people's reaction to her and what stupidity might come out of their mouth,when will I be able to pump milk when I'm running around all day Saturdays trying to get kids dressed and to their games,what a pain it will be on days I have to go to therapies and soccer practices.
Man,I guess I'm just a complainer today.

Middle School Wrestler with Down syndrome

By Christopher Drexel
Fri, Feb 20, 2009 (2 a.m.)
A Passion For Wrestling
Billy Wolfbrandt can't stop smiling as he goes through wrestling practice with the rest of his Faith Lutheran Jr/Sr High School teammates.
It doesn't matter if he is conditioning, stretching or learning new moves, if he makes a mistake, his teammates tell him. If Wolfbrandt, an eighth grader with special needs, requires more time to learn moves, the coaches work with him. When he scores points, cheers and high fives are aplenty.
Wolfbrandt is arguably the most-liked person in the wrestling room. He is inspired by the competition but likely not as much as those around Wolfbrandt are inspired by him.
Neither Wolfbrandt nor Faith Lutheran will allow his Down syndrome stop him from pursuing his passion for sports, particularly wrestling.
"It's been a thrill seeing him wrestle," Wolfbrandt's father, Lew Wolfbrandt said. "Everyone has been so accepting of him and he's just had a blast doing it. Part of what works with him is he feeds off the hard action of wrestling. The soft-touch and delicate sports doesn't do with him."
Billy Wolfbrandt is one of four students at Faith Lutheran Jr/Sr High School's middle school involved in the Mark 10:14 Program, which includes special needs students in regular classroom environments and in extracurricular activities.
Other students in the program have participated in the school's art club, computer club, choir, and basketball and track teams. Billy Wolfbrandt decided to play football and wrestle.
"He's always liked sports," Lew Wolfbrandt said. "He likes watching it on TV. He's a hard one to sit and watch a football game with because he's yelling at the TV the whole time."
As a seventh grader, Billy Wolfbrandt played flag football and wrestled. This fall, he played on the Crusaders' eighth-grade tackle football team, seeing game time as a defensive tackle and on special teams.
Though he was somewhat uncomfortable at the beginning, Billy Wolfbrandt grew accustomed to being knocked down and wearing heavy pads. Teammates would make a habit of forming a circle around him and cheering.
But he has made his biggest strides in wrestling, his father said.
Last season, Lew Wolfbrandt said, Faith Lutheran wrestling coaches would inform opposing teams of his son's condition. His opponents would compete at half speed, allowing him the opportunity to execute moves he had learned.
But this year, Wolfbrandt has advanced enough that opponents wrestle him the same as any other match.
Faith Lutheran coach David Keavin still periodically teaches Woflbrandt moves at a slower pace than the rest of the team, but the coach said Wolfbrandt has improved "three fold" from a year ago.
"Last year, he was new to it and didn't know how to control himself in the wrestling room, but he's gotten a lot better," Keavin said. "He's got the fundamentals down now. It's easier trying to teach him a move when I say certain wrestling terms. Now he understands them and he'll do them right away."
Keavin said Billy Wolfbrandt, who wrestles at 140 pounds, is one of the strongest wrestlers Faith Lutheran's team has and opponents struggle to take him down. The coach hopes he will continue to wrestle at the high school level.
"I hope to see him there," Keavin said. "I've talked to the (high school) varsity coach. He's glad to have Billy when he gets to the high school level. They'll get him matches just like I do, and he should have the same fun he has up there as he does with us."
Lee Segalla, who is in charge of the Mark 10:14 Program, said Billy Wolfbrandt has continued to progress since joining the program, adding participating in athletics in a big reason for the success.
Before he joined the Mark 10:14 Progam, "he didn't know many kids or know much about school, but now he knows almost everyone by name and he does very good in class," said Chase Povlov, one of Wolfbrandt's classmates. "It's good he's trying to do what everyone else is doing, and I think it's really nice he's on the wrestling team."
Lew Wolfbrandt said one of the biggest rewards about his son's participation in sports is watching how much teammates, coaches, opponents and fans have welcomed his son.
"He hasn't won a match, but if you ask him, he's won every one of them," Lew Wolfbrandt said. "Last week, he scored a bunch of points and at the end of the match the whole crowd cheered because when he gets up — win, lose or draw — he puts his hands in the air with a big grin and was happy he was able to compete."


Karate a passion for a Cooper City disabled man
In Dave Pancallo's karate class at the Cooper City Community Center, the sessions are not for the faint of heart.

To the outside world, Dave Pancallo, 34, of Cooper City may be just a man with Down Syndrome. But to the karate classes at Cooper City Community Center, Pancallo is "Mr. Dave." He has taken classes for about three years with the USA Goju Federation at the center, and helps lead workouts for the adults and children who take twice-weekly classes there. Here, Pancallo leads a training exercise.
Special to The Miami Herald
To the outside world, Dave Pancallo, 34, of Cooper City may be someone with Down syndrome and that's that. But Pancallo is filled with surprises.
To the people taking karate classes at the Cooper City Community Center, Pancallo is Mr. Dave -- the guy who helps lead workouts for the adults and children who take twice-weekly classes there.
Pancallo is a regular at the center's USA Goju Federation karate lessons. He offers no mercy and no apologies for his exercise regimen, leading karate students in a series of leg lifts, push-ups and jumping jacks that sometimes leave them gasping for air.
''You can take a break and go to the bathroom or get some water, whatever you want,'' Pancallo called out to the students after one particularly grueling session.
''How about a defibrillator?'' one student shot back -- only half in jest.
Karate teacher Christina Brownlow said she remembers when Pancallo first started coming around.
''He was in the adult class, but he would come early and observe,'' she said. ``One day, I asked him if he wanted to help.''
Pancallo has taken ownership of that request. He arrives early for the Monday and Wednesday sessions to set up chairs along the room's perimeter. He helps line up the younger kids and watches over the children, Brownlow said.
''He brings honor to this class,'' Brownlow said. ``You can trust what he says because he never lies and he always does his best.''
To the children, he is another class leader, Brownlow said. They make sure he is always recognized as an adult.
That's how Pancallo has lived his life, said sister Becky Hinson of Fort Lauderdale. ''He doesn't know anything's wrong with him,'' she said. ``He has always been treated so normally.''
Pancallo, who works five days a week as a dishwasher at Uncle Al's restaurant in Weston, has always been independent, Hinson said.
After being diagnosed with diabetes some years ago, he put himself on a daily exercise schedule that included jogging on a treadmill. It led to a 100-pound weight loss and the elimination of his diabetes medications.
''Now I'm much healthier,'' Pancallo said. ``I work out every day and control my eating.''
A brown belt in karate, Pancallo is working on his black belt.
''I do karate because I'd like to protect my family,'' he said. ``I'd like to teach a class one day.''
Karate is a good outlet for someone with disabilities, Brownlow said, because everyone is considered equal.
''In karate, no one is singled out as weaker or stronger,'' Brownlow said. ``You work only to achieve the highest level you can achieve.''

Friday, February 20, 2009


Ruby has started laughing.She fills my heart with joy when I hear her giggle because I'm kissing on her sweet little neck.

Someone I Love

Linda at Lila's Miracle Life posted this.I'm posting it on my blog so I wont lose it.Lori Hickman puts into writing how I feel.

Someone I Love
By Lori Hickman
Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...
And still others don't understand what it is to be me.. they aren't living in my skin.
© Copyright 2000 Lori Hickman. Originally published as the dedication to Living in My Skin, The Insider's View of Life With a Special Needs Child by Lori Hickman.
Lori Hickman is a speech pathologist in Washington state. She is the author of Living in My Skin, The Insider's View of Life With a Special Needs Child, and four other books on speech and apraxia.

Thursday, February 19, 2009

Down syndrome a Modern -Day Death Sentence

My sweet Ruby.

I get so angry when I realize how many precious children are not allowed to have a chance at life and to prove to their parents how wonderful they are.My Ruby blesses me every day and I can say I am thankful to have her and would never change the opportunity to be her Mother.

Down syndrome a modern-day death sentence
By Joseph A. Cannon
Deseret News
Published: Sunday, Feb. 15, 2009 2:01 a.m. MST

Claire will never read these words. But at least she is alive and brings joy to her many friends and family members. You see, Claire is a survivor. She survived one of the most ruthlessly effective extermination programs in modern times.
Claire has Down syndrome.
Most of her Down syndrome brothers and sisters never got to be born. In the United States, more than 90 percent of babies diagnosed with Down syndrome are aborted. (In some other countries this number reaches 95 percent.) But apparently this isn't enough for those who would eradicate these defective persons. The problem is that the current methods for diagnosing the Down defect are ultrasound, biochemical exams or amniocentesis. But amniocentesis is expensive, invasive and potentially harmful to mothers and ultrasound may not be accurate.
Not to worry, Lenetix, a diagnostic technology company, has developed a new maternal blood test for the detection of Down syndrome and other chromosomal abnormalities. With no irony, Lenetix CEO Leonard H. Kellner tells us "we take deep pride in the technology we have developed because it has the potential to impact the lives of millions of women and their unborn children." Lenetix medical director, Steve Brown, M.D., tells us that "pregnant women and their physicians are clamoring for an improved, noninvasive prenatal test because they fear the risks of amniocentesis."
Sounds wonderful, like describing a new life-saving wonder drug or technology. But the sad, stark fact, well-known to anyone in this field, is that virtually every diagnosis of Down syndrome lends to the abortion of that unborn child. This is eugenics with a vengeance.
While the folks at Lenetix may simply be doing their best to advance science, other voices are more sinister when it comes to aborting children with Down syndrome.
"Like many," notes Libertarian commentator Nicholas Provenzo, "I am troubled by the implications of . . . Sarah Palin's decision to knowingly give birth to a child disabled with Down syndrome. Given that Palin's decision is being celebrated in some quarters, it is crucial to reaffirm the morality of aborting a fetus diagnosed with Down syndrome." This is necessary, Provenzo informs us, "because a person afflicted with Down syndrome is only capable of being marginally productive."
Dr. Rahul K. Parikh, writing in, takes a slightly more compassionate approach. While "greatly" admiring Palin's decision to "knowingly" give birth to a child with Down syndrome, it is critical that her decision not be imposed on other women. Parikh comes down hard on "rabid anti-choice activists who have called [aborting Down syndrome children] eugenics via medicine." Yet it is hard to see how this isn't "eugenics via medicine."

George Will defines "the pernicious quest for a disability-free society" as "respectable eugenics."
We are now quickly sliding down the slippery slope. What about people who are only "marginally productive" after they are born or when they get old? Are their lives worth preserving? And what does "marginally productive" mean anyway? In the literature "marginally productive" very often edges into "merely inconvenient."
In case you think these are red herring questions, hear Princeton professor Peter Singer. "Killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all. That doesn't mean that it is not almost always a terrible thing to do." Not because there is anything inherently wrong with killing an infant but because "to kill an infant is usually to do a great wrong to its parents."
The ease with which we disregard the idea of life in its beginning and how we increasingly diminish restraints on voluntary euthanasia and physician-assisted suicide as life winds down, illuminates how far we have fallen from our founder's declaration that we are endowed by our Creator with the unalienable right of life.

Joseph A. Cannon is Claire's dad and editor of the Deseret News. He can be reached by e-mail at

Wednesday, February 18, 2009

'Ambassador ofLove'

This article from just blessed my heart.This man, Aaron Shaw, has so many wonderful accomplishments.Thank God for parents who wouldn't listen to the 'experts'and kept their children out of institutions.
I hope you are blessed by this article ,too.

Nenana man with Down syndrome an 'ambassador of love'
By Chris Freiberg
Published Monday, February 16, 2009
FAIRBANKS - Those who know Aaron Shaw best call him “an ambassador of love.”
Shaw, who has Down Syndrome, celebrated his 40th birthday Saturday with a reception in Nenana.
“I like birthday candles and birthday cake,” he said of the celebration.
Shaw is well-liked in Nenana where he is an assistant manager at A-Frame, and has worked there for five years, but that is just one of many jobs he has held during the years.
Shaw was schooled in Anchorage because there were no adequate classes for a child with Down Syndrome near Nenana at the time.
“When he was first born, they were still telling us to send him away, and that just seemed crazy,” Shaw’s mother, Nancy, said.
Shaw excelled in school, and even took a few college cooking classes, but while learning how to make doughnuts was a great experience for him, it was difficult for him to find a ride to work early in the morning.
He ended up working at Burger King in Anchorage, and appeared in a political TV commercial for the owner. Eventually his mother became concerned about him living so far away, so he returned to Nenana to live in a small house next door to her.
A natural salesman according to his mom, Shaw has worked at several Chevron stations, a greenhouse and as a page in Juneau. He has his own business selling herbal shampoos.
“I’m pretty good at it,” he says proudly.
Shaw’s mother said he is a very hard worker.
“He kind of pushes himself, we don’t have to,” she said. “He really wants to do everything.”
Penny Forness, a friend of Shaws since he was born, said he is a remarkable person.
“Sometimes it is hard to tell just what Down Syndrome is because he is so spot on and then he will say something that brings the reality back,” she said.
Shaw is a big fan of medical drams like “ER,” possibly because of his interactions with doctors growing up, his mother said. He also makes sure to tune in each week for new episodes of “24.”
He’s no couch potato, though. One of his favorite hobbies is photography.
“I love to take pictures of everything in the house and stores,” he said. “It’s just terrific.”
He also makes baby clothes and quilts and has won embroidery prizes at fairs.
“I just love to make ’em,” he said.
And though he didn’t make the clothes himself, he did bring some baby clothes to Gov. Sarah Palin when she visited Nenana last year. Palin’s infant son, Trig, also has Down Syndrome.
“I tell you this, I think that kid with Down Syndrome, I think he’s a very smart kid,” Shaw said, adding that he thought the governor was very nice as well.

Wordless Wednesday

Tuesday, February 17, 2009

Ruby blows raspberries

Yesterday, at Ruby's speech therapy,Ruby started blowing raspberries at her ST while the ST was doing her mouth exercises .The therapist was so tickled about Ruby being happy and playing with her.The ST also fed Ruby applesauce yesterday and Ruby blew her wonderful raspberries in the applesauce,too.She had us laughing so hard and getting baby food everywhere.I'm sure when I left with Ruby that the ST had to clean her glasses! I wish I had a video of it!

Friday, February 13, 2009

Gross Motor Skills

This is a wonderful book.I was glad to have it so I would know what I should be working on with Ruby when I first brought her home.Now it is great to have because Ruby's PT just marks what I need to work on and I don't have to have tons of loose paper handouts.
Here is a review from Woodbine House the publisher.You can also purchase it there.

Help Tucker

Please visit this website and help this precious little boy! His heart surgery is scheduled for April 13,2009

T21 Traveling Afghan

This looks like it will be a fun project!Click on the button and take a look!

Thursday, February 12, 2009


Last night at our Wednesday night church service our regular pastor did not give the lesson because he had been gone all day to do a funeral service, which was a few hours away, and so one of the older men in our church gave the Bible study.It was a good Bible study but at one point during the lesson the speaker mentioned Ruby and said,"You can't understand what it's like to have a retarded child unless you have one yourself,you can have empathy for those parents but you don't know what it's like."The man that was speaking does understand because he has a grown son who has Williams syndrome. I honestly can not tell you now why he even brought it up because I was so shocked to hear someone say Ruby's name and then say she is retarded.I know she is I guess but I didn't want to hear it.I think even if he had used different words like, mentally disabled,I wouldn't have liked that either.

Tuesday, February 10, 2009

Blog Awards

Cathy gave me these blog awards! Thanks,Cathy!
Now I get to pass them on to 10 bloggers and leave them a comment letting them know and they have to pass them on to 10 other bloggers.
Lovin Mama at Livin for the Love
Laurie at Days with Dylan
Monica at Monkey Musings
Loren at Malakai Stow
Beverly at Le Fevre Times
Wow,that's hard to do I could pick many more!

Sunday, February 8, 2009

Question about my kid's ages.

My oldest son and his wife.

Laura said,
Elizabeth 16 my oldest just ask well, if they have 11 what are their ages? I said I'm not sure so, we'll be back to see more about your awesome family!

Laura,thanks for visiting my blog.My children are one of my favorite subjects:) So I don't mind answering questions about them.
My oldest four are boys and they are 22,18,17,15, and then my 14 year old daughter,my 11 year old son,then three girls 9,7,5 another boy who is 3 almost 4 and then miss Ruby who is 6 months.

Saturday, February 7, 2009

My Blog

My husband says the pink background on my blog makes it hard to read.Is it hard for you to read? Should I change it?

How Warm Are You

You Are Very Warm

You are kind, caring, and empathetic. A lot of warm energy radiates from you.

And it's not an act - you truly like people. You get a charge from people being around you.

You are are easy going and very socially adaptable. You're willing to overlook peoples'quirks.

You enjoy meeting people from all walks of life and helping them if you can. Giving makes you feel good.


Tuesday, February 3, 2009


My husband went Saturday and signed up my 14,9,7,and 5 year old daughters for soccer.We missed last soccer season because of the birth of Ruby.(We weren't sure what medical issues Ruby might have and didn't want to commit to anything).
My 7 year old daughter will be on a team with some of the girls she played soccer with before I had Ruby.One of the Mom's and I were pregnant and due about the same time.I'm having a hard time knowing I will have to see this Mom and her baby.I'm worried about the emotions I will have when I see what her baby can do and what Ruby is not doing.Just knowing I would be seeing her reminded me again of my thoughts and expectations of the child I was carrying and that I did not have that child.
I love my little Ruby so much and I don't want other people to feel sorry for me or Ruby,she is such a wonderful baby.
So,I'm not looking forward to soccer but I have a few days to sort through my feelings and deal with them before practices start.Maybe I will be o.k. by then.I already feel a little better just getting it out here.