Fresh out of the bath
Diddy goes in the mailbox
Now takes a nap
Hi! I covered up my Diddy!
Coming in for a kiss
She actually fell asleep this
way!
Supported Employment: The End of an Era
1 year ago
Tuesday, April 22, 2008
Diddy
Two weeks ago we were at a pediatrician appointment, we were waiting in the exam room and they had wall paper with cats all over it. I kept pointing at them and telling Ella "Kitty, meow." Well a few minutes into it I stopped and Ella was standing on my lap, pointed over my shoulder and said "Diddy, ROAR." It was so stinking cute!! She did it over and over. So, I told my mom this story and she had to go buy Ella a "diddy" and send it here. Here are some pics of her.... 
Wednesday, April 16, 2008
A Day at the Park!!
It was so beautiful here on Sunday, I think it ended up being 78 degrees. So, we decided to head down to Riverfront Park. It was so nice. We discovered that there is a carnival there, permantly, that has little kiddie rides, which of course thrilled Hunter. We packed a little picnic (Hunter's newest obsession) and layed out a blanket ate lunch, played frisbee, watched the ducks, played at the playground, walked over the bridges and saw the falls (to my friends in Wichita Falls, these are ACTUAL falls : ) it was really a great day! Of course I had my camera with me, so here are some pics!
Where did my baby boy go?
Little pilot
1st time on a playground
swing.
When it would stop she would
bend over like this, kick her feet
and the swing would rock.
In deep thought.
I don't even know what to call this face
it's the one she makes when she is
pretending to be upset. It is
so funny!!!
Monday, April 14, 2008
Ella's Newest Skill!!!
Saturday, April 12, 2008
Mostly pics!
We had a great day! It was almost 70 degrees!!! At 9 this morning we went to a breakfast for the Down Syndrome Family Network. There were quite a few people there, mostly teenagers which is always fun to see! Of course our buddy Piper was there and we met a new family! Well, actually I had already met Riley (16 months old) at the mall with his mommy's friend, so I got to meet his mom and dad and older brother. Our big boys hit it off so hopefully we will be seeing a lot of them! Other than that we went out driving around, checking out the sites and took a few pics!
I hate that these are blurry!
Daddy and babies
Mommy and babies
The family
Hunter got a free helmet atthe fairgrounds today from
the Kiwanis! Oh yeah and we
got our van registered in WA.
Ella at home practicing standing
and not holding on.
Still wearing the helmet
Mmmmm, a wipe
Clean thankfully
This is the face I got when
I said "can mommy have it?"
Wednesday, April 9, 2008
Updates...
First and foremost I would like to let everyone know that the new baby Ella Grace is home from the hospital!!! Her grandma, Betty, has kept me up to date, (such a sweet family!!!) I hope mom is feeling great and getting some sleep : ) I feel so lucky to be in contact with this family. Perhaps luck is the wrong word, I feel blessed, as I am sure this was no coincidence!
Obviously I am trying out a new background, I like it, I think. I have had to go in and change the color of previous posts because you couldn't read them on this color. So, what do you think??
On March 29th I attended a conference here in Spokane, it was called "Celebrate Success" and was put on by the ARC. It was a good conference and a learned a good bit. Now, I was SO sick, my lovely husband gave me the flu, when I woke up that morning I didn't feel too bad so I went. By the time it was over, ugh. Anyhow, the guest speaker was Kathie Snow, author of the book Disability is Natural. She was definitely interesting, she has some very strong opinions on therapy and early childhood intervention. While I didn't agree with most of what she said she did have some very good quotes and points. So, I thought I would share some that I scrawled down on the back of my folder.....keep in mind I was sick, so who knows how accurate any of this is. If it was up on the overhead and listed an author I wrote it down, if no author is listed I can only assume that the quote is from Kathie Snow. Bare with me : )
" A green apple is more like a red apple then different. A person with a disability is more like people without disabilities than different. One in every five Americans is a person with a disability. One of the five apples in the bowl is green, and the sun shines equally on them all!"
"Never deny the diagnosis but always deny the negative prognosis."
- Norman Cousins
"Eliminate the word 'wrong' about people with disabilities."
"Disability is a consequence of the environment." (this one was interesting to me, she told a story of how a friend of hers that is also a speaker is blind. She had the hotel staff where she was speaking come in and turn off the lights during her speech. Of course everyone screamed and panicked and she said "Now who has the disability? I don't need the light." and something about how light bulbs are an assisted device for the sighted. I thought that was funny, but so true. Kathie Snow also told us how her son (who has cerebral palsy) is not disable in their home because everything is arranged so that he has access to it, such as lowered microwave, cabinets etc. and that he is only disable out in public.)
- she said that we need to get rid of the word "special needs" it only evokes pity. She also stated that we need to respect the privacy of our children, and not go around sharing their diagnosis. We don't walk up to people and say "hi my name is Kacey and I suffer from depression." She said telling people is just trying to justify the actions of our child. Now, this I don't know how I feel about. I enjoy telling people that Ella has Down syndrome, I look at it as an opportunity to educate people and to show the world that Ds is not some scary thing.
"Everyone thinks of changing the world no one thinks of changing themselves."
"Every trait or behavior is NOT a consequence of the disability" Hmmm, you mean people with Down syndrome are not always happy????
" Do not compare your child to others, only to themselves."
She said Martin Luther King said "I have a Dream" not "I have an IEP" funny. She said sometimes kids with disabilities lose the ability to dream because we are so focused on meeting their goals.
Perhaps my favorite quote -
"Parents have to be recognized as special educators, the true experts on their children; and professional people -- teachers, pediatricians, psychologists, and others -- have to learn to be consultants to parents."
Nicholas Hobbs, Vanderbilt Univ.
And last I wanted to share these with you, they are from a hand out titled
What Our Children Contribute
It's a sad fact that many people believe the money spent on special education is wasted. They say that other kids -"normal" kids - are more deserving of the funds, for they have the potential to make something of themselves, achieve independence, and contribute to society. They ask why so much money is being spent to educate "tomorrow's grocery baggers." I pity those people. They obviously fail to recognize that our children begin contributing to society from the moment they're born - on so many levels. For example:
- They challenge our medical professionals.
-They teach our teachers.
-They focus our priorities.
-They enhance our creativity.
-They heighten our awareness.
-They strengthen our resolve.
-They mitigate our selfishness.
-They lift our spirits.
-They inspire our loyalty.
-They amplify our generosity.
-They alleviate our misgivings.
-They widen our perspectives.
-They accept OUR shortcomings.
-They boost our self-esteem.
-They relieve our doubts.
-They reinforce our beliefs.
-They evoke our compassion.
-They expand our social consciousness.
-The accelerate our growth.
-They reveal our motives.
-They accommodate OUR limitations.
-They broaden our horizons.
-They magnify our resolve.
-They sharpen our wits.
-They refine our sensibilities.
-They shape our character.
-They define our future.
The list could go on and on and on. Whereas all children do these things at some point and to some degree, children with disabilities constantly and consistently push the envelope. It's what they do - naturally. It's what they give - freely.
Those who view our children as burdens to society are asleep at the wheel. WAKE UP! Our children are incredible assets, both on a personal and on a national level. They contribute continually in countless, often immeasurable, ways.
I'm guessing that this was put together by Kathie Snow, but am unsure. I picked it up off of one of the display tables set up there and thought I would share! Sorry it's such a long post but I really like those quotes. One last one that I will share, I found soon after Ella was born and attached it to my emails....
Direction is more important than speed. We are so busy looking at our speedometers that we forget the milestone. -Anonymous
Obviously I am trying out a new background, I like it, I think. I have had to go in and change the color of previous posts because you couldn't read them on this color. So, what do you think??
On March 29th I attended a conference here in Spokane, it was called "Celebrate Success" and was put on by the ARC. It was a good conference and a learned a good bit. Now, I was SO sick, my lovely husband gave me the flu, when I woke up that morning I didn't feel too bad so I went. By the time it was over, ugh. Anyhow, the guest speaker was Kathie Snow, author of the book Disability is Natural. She was definitely interesting, she has some very strong opinions on therapy and early childhood intervention. While I didn't agree with most of what she said she did have some very good quotes and points. So, I thought I would share some that I scrawled down on the back of my folder.....keep in mind I was sick, so who knows how accurate any of this is. If it was up on the overhead and listed an author I wrote it down, if no author is listed I can only assume that the quote is from Kathie Snow. Bare with me : )
" A green apple is more like a red apple then different. A person with a disability is more like people without disabilities than different. One in every five Americans is a person with a disability. One of the five apples in the bowl is green, and the sun shines equally on them all!"
"Never deny the diagnosis but always deny the negative prognosis."
- Norman Cousins
"Eliminate the word 'wrong' about people with disabilities."
"Disability is a consequence of the environment." (this one was interesting to me, she told a story of how a friend of hers that is also a speaker is blind. She had the hotel staff where she was speaking come in and turn off the lights during her speech. Of course everyone screamed and panicked and she said "Now who has the disability? I don't need the light." and something about how light bulbs are an assisted device for the sighted. I thought that was funny, but so true. Kathie Snow also told us how her son (who has cerebral palsy) is not disable in their home because everything is arranged so that he has access to it, such as lowered microwave, cabinets etc. and that he is only disable out in public.)
- she said that we need to get rid of the word "special needs" it only evokes pity. She also stated that we need to respect the privacy of our children, and not go around sharing their diagnosis. We don't walk up to people and say "hi my name is Kacey and I suffer from depression." She said telling people is just trying to justify the actions of our child. Now, this I don't know how I feel about. I enjoy telling people that Ella has Down syndrome, I look at it as an opportunity to educate people and to show the world that Ds is not some scary thing.
"Everyone thinks of changing the world no one thinks of changing themselves."
"Every trait or behavior is NOT a consequence of the disability" Hmmm, you mean people with Down syndrome are not always happy????
" Do not compare your child to others, only to themselves."
She said Martin Luther King said "I have a Dream" not "I have an IEP" funny. She said sometimes kids with disabilities lose the ability to dream because we are so focused on meeting their goals.
Perhaps my favorite quote -
"Parents have to be recognized as special educators, the true experts on their children; and professional people -- teachers, pediatricians, psychologists, and others -- have to learn to be consultants to parents."
Nicholas Hobbs, Vanderbilt Univ.
And last I wanted to share these with you, they are from a hand out titled
What Our Children Contribute
It's a sad fact that many people believe the money spent on special education is wasted. They say that other kids -"normal" kids - are more deserving of the funds, for they have the potential to make something of themselves, achieve independence, and contribute to society. They ask why so much money is being spent to educate "tomorrow's grocery baggers." I pity those people. They obviously fail to recognize that our children begin contributing to society from the moment they're born - on so many levels. For example:
- They challenge our medical professionals.
-They teach our teachers.
-They focus our priorities.
-They enhance our creativity.
-They heighten our awareness.
-They strengthen our resolve.
-They mitigate our selfishness.
-They lift our spirits.
-They inspire our loyalty.
-They amplify our generosity.
-They alleviate our misgivings.
-They widen our perspectives.
-They accept OUR shortcomings.
-They boost our self-esteem.
-They relieve our doubts.
-They reinforce our beliefs.
-They evoke our compassion.
-They expand our social consciousness.
-The accelerate our growth.
-They reveal our motives.
-They accommodate OUR limitations.
-They broaden our horizons.
-They magnify our resolve.
-They sharpen our wits.
-They refine our sensibilities.
-They shape our character.
-They define our future.
The list could go on and on and on. Whereas all children do these things at some point and to some degree, children with disabilities constantly and consistently push the envelope. It's what they do - naturally. It's what they give - freely.
Those who view our children as burdens to society are asleep at the wheel. WAKE UP! Our children are incredible assets, both on a personal and on a national level. They contribute continually in countless, often immeasurable, ways.
I'm guessing that this was put together by Kathie Snow, but am unsure. I picked it up off of one of the display tables set up there and thought I would share! Sorry it's such a long post but I really like those quotes. One last one that I will share, I found soon after Ella was born and attached it to my emails....
Direction is more important than speed. We are so busy looking at our speedometers that we forget the milestone. -Anonymous
Friday, April 4, 2008
WELCOME NEW BABY!!!
Ella Grace, the second, has arrived!!! You may remeber Denise from this post, http://theamazingellagrace.blogspot.com/2008/02/i-am-in-tears.html, she sent me an email to let me know that her baby girl Ella Grace was born on March 29th, about 5 weeks early! She weighed in at 6lbs 9ozs and 18inches long, and had no breathing problems! She is still in the hospital until she eats a little bit better and does have 2 small holes in her heart that the doctors say can close on their own! She sounds like she is doing great and as you can see she is BEAUTIFUL!!! Congratulations Denise and family and welcome to the world Ella Grace. The only thing better than one Ella Grace in the world is two!!! These two pictures below are of my Ella Grace, don't they look A LOT alike!! Wow!
Thursday, April 3, 2008
READ THIS BOOK
I have been waiting to read this book for a couple of months, I read an article - A New Song Parenting my son with Down syndrome Isn't a Trial; it's a Joy By Jennifer Graf Gronenberg back in September in my Baby Talk magazine, it said that she was working on her book and I knew that I HAD to read that book. I think really I had been waiting for 19 months to read this book.
This book is my story, obviously a different place and time, but I think it is the story of every mother who is blessed with a child that has Down syndrome. When you find out that your baby has Down syndrome you go through such a huge range of emotions and Jennifer tells it so beautifully. The first chapter is titled "At First, It Hurts to Breath" and it is so true. I found myself taken back to those first days in the hospital, I was so devastated, I lay in bed that night, tears just falling into the book. Night after night as I read I would be shaking my head, yep, that's exactly how I felt too. This particularly came to head last night as I was reading I came upon these lines "And I wonder, too, if it's guilt. I didn't appreciate Avery quickly enough, which means I'll lose him-it's right that I should. A mother who's been given a pearl and doesn't appreciate it doesn't deserve it." I am always waiting for the proverbial other shoe to drop, I was so devastated when Ella was born that I did not want to live. I do not deserve to have this amazing child, and I am in fear that something will happen to her and she will be taken away because I was so sad when I should have realized how blessed I am. I took such comfort in her words and in the next two pages, Jennifer forgives herself and I know that I can do it too.
Everyone needs to read this book. Jennifer is an actual author and paints pictures with her words. I am a true lover of books and reading and I promise you this book will not let you down. I find myself sad tonight that I have completed it as I always am to finish a truly good book. Wonderful job Jennifer, thank you for sharing "our" story.
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