Wednesday, April 9, 2008


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


Chris said...

Kacey, thanks for this info. I was actually going to hear Kathie Snow speak here in CT on Monday night, but I had a conflict (a parent meeting on the Family Life curriculum (puberty, reproduction etc.) at my daughter's school).

I'm curious--what was Kathie's take on early intervention--the part you disagreed with?

Glad to hear that new baby Ella Grace is home and doing well.

Shannon said...

Those are great quotes...I'm so glad you shared. :) I like the new background, too, but it's a little harder to read than the last one.

We got a preliminary offer from WA...unless they really surprise us with the official offer (on paper), it looks like we'll be in Wichita Falls (and the mil.) a while longer.

Anonymous said...

Kathie's insight is refreshing and sounds like she had an enlightening seminar. Thanks for sharing your experience. Like the new background, the butterfly is pretty, but it is kind of hard to read. It is hard to see the words. Happy to hear that Ella Grace the 2nd and family are doing well. Love, Aunt Tami and family

Jennifer said...

I like this background better. I didn't like the green. I'm glad I can be honest since we're bff's. ha ha. Are you coming to visit this summer? We're considering Castaway Cove season passes. Emily will be heartbroken if Hunter can't come. :) And our girls will have so much this time!

The Bliss Family said...

Thanks for sharing the quotes. If we can educate everyone to be more accepting, the world would be a more beautiful place.

Bliss Family

Kristen said...

I enjoyed reading these quotes. Thank you for sharing. If you don't mind I would like to put some of them on Cayman's blog.

I agree with you about sharing your child's diagnosis. I think it's great to educate people. You said it exactly right that sharing about Ella shows the world that DS is not scarey. My biggest motivation to create Cayman's blog was to educate people in our community about her so they would be less intimidated by her anomalies. And it's done exactly that. I don't think it would have been better at all to not publically blog it. It's broken the ice and people now just love all over her. I think to not share the diagnosis is encouraging people to "pretend" they don't know there is something different.

You have helped me be a better mom to Cayman because of you blog. My child may not have DS but I can still connect to what you write.

Kristen said...

I didn't like the way I stated my last sentence in the 1st paragraph:

I think to not share the diagnosis is encouraging people to "pretend" they don't know there is something different.

I wanted to add to it to clarify my point. Often if people "pretend" to not notice, what they actually end up doing is ignoring and that's wrong and sad for obvious reasons. And I think sharing your child's diagnosis can teach the child how to share about themselves and because they know how to share their diagnosis, I have to believe that would build confidence rather than if they didn't know what to say.