Friday, October 17, 2008
Thursday, October 16, 2008
I remember one day during the holiday season seeing a young mother wrestling with several young children. Many baskets full with toys, electronics, clothing going to home to be wrapped for the holidays passed her by. In her basket, was milk, cereal, bread and some diapers. All of the sudden a man came out of no where and handed her a $50 bill. She looked surprised and immediately tried to give it back. He just nodded and said very quietly, "I've been waiting to give this to someone who deserves it." And then he ran off before she could say anything more.
I was so touched by this man. Who carries around $50 dollar bills? I didn't get to ask him- but I am certain he was holding it and waiting for the opportunity to share with someone else. I love the way he didn't say she was "in need" or "less fortunate".
Fast forward many years now. I have had many opportunities to hold my extra money and wait for someone in need. My husband is a frugal but very generous man. We still don't have a Wii... but if someone needed rent money, their car broke down or some other need- he would help in a heart beat.
OK- this sounds like a "we are sooooo awesome post" so I will get to the reason I wanted to talk about this. Lately, in the last several years, I have become less excited about helping others. It is really hard when you buy someone a car and they have a laptop. When you buy someone a ticket to go to an activity and they have already done it several times. It seems like so many cry poor, when they have more than us. We live way beneath our means and often go without because we know there may be a day when we need it. We have a good portion of our girls' college tuition's saved, because we don't want to have to get loans or grants.
I have realized that very few people in this country "need" anything. I'm not sure parents are teaching their children the difference between "needs" and "wants". I have become a bitter old lady who is weary of charity (other than a ride somewhere, watching kids or a hot meal). I know I shouldn't judge if anyone is in need.
Well, I think I have finally found my answer!! I have found many little ones who are in great need. Many of my on-line friends are adopting children with down syndrome internationally. Did you know that in many countries once a child with special needs turns four they are unadoptable and are sent to mental institutions? Some countries do nothing to help these children- including providing them with life saving surgeries. Although the baby houses are staffed with loving caretakers, many older children die alone, in cribs, with no one to love them or care for them.
If you are looking for a "good cause" or someone to help- PLEASE, PLEASE, PLEASE visit http://www.reecesrainbow.com/ an International Down Syndrome Orphan Ministry. You can be a prayer warrior (for free) where you are matched up with a child you can pray for daily. You can give a one time donation. You can give regularly. You can sign up for iGive.com where a portion of the proceeds bought on the internet (from 700 different well known companies) goes to Reese's Rainbow. Also, in a couple of weeks they will start selling ornaments called "Christmas Angel Tree Project").
My heart and thoughts go out to these children. I wish I could provide each of them a home and proper medical care. But for now, I can pray for my little Anastasia (3/31/05) from the AT RISK PAGE. Go take a look- she reminds me sooo much of Sadie. Anastasia has stolen my heart! You can pray for her too.
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Wednesday, October 15, 2008
Tuesday, October 14, 2008
Monday, October 13, 2008
I didn't get to post anything yesterday and found this beautiful story and video on Hidden Treasures blog. Thanks Di for sharing this wonderful and inspiring story with us!
So, here's one of my favorite Sadie memories. Sadie was very floppy at birth. She had no tone and was like jello. It was difficult to nurse her and I had to carry her like a football because if I held her on my shoulder she would slump down and fall.
When she was 10 weeks old I was in the nursing room with 5 other mothers who gave birth within 6 weeks of Sadie. She was the oldest, smallest and most fragile. I remember trying to get her in a good position to nurse, looking around, and noticing all the strong healthy babies getting a snack. They were cooing, smiling, pulling up their heads- and there was Sadie- floppy, limp and little eye contact. This was probably one of the hardest moments and the moment I realized Sadie would never be the same as other "typical" children. How could she? She was already so many steps behind all these newborns.
It was necessary to me to wake Sadie every few hours for feedings. She had short endurance therefore she ate less more often. All day I thought if only she would smile at me, then I would know she's in there. During her 2 am feeding I remember very clearly I looked down pulled her close to my face and whispered, "I love you Sadie". At that very moment, when I thought I couldn't take it one more day, she smiled. It was the sweetest biggest smile ever. I knew without a doubt that Heavenly Father loved me and loved this sweet little girl he sent to our family.
Sadie hasn't stopped smiling since. She has the sweetest, most beautiful little spirit. It's funny, but it is really hard to see that she is any different than any other child behind that smile.
Saturday, October 11, 2008
Some of my visitors might not be familiar with why I am blogging 31 for 21. As you know Sadie has Down syndrome. It is also called Trisomy 21 or T21 because Down syndrome is caused by an extra chromosome on the 21st gene. Anyway, 31 for 21 is a challenge for people who love someone with ds to blog all 31 days of October to bring Down Syndrome awareness.
So in honor of this I am going to share 21 things I love about Sadie...
1. I love when she says, "I hold you mom"
2. I love her little legs and arms and that I have to roll up all her pants and sleeves to fit her.
3. I love her beautiful blue eyes and the brushfield spots (a common ds characteristic) that look like someone has splattered white paint in them.
4. I love that she has woken me up at four in the morning on more than one occasion to have a "baabaa" and watch "Yo Gabba Gabba, Gabba Gabba Yo, Pleeeeese mommy!"
5. I love that when she runs it looks like the only place her body bends in at the waist and she just waddles back and forth.
6. I love the freckle on her butt.
7. I love that every time a car passes she says, "daddy's home, I'm sooo excited!"
8. I love her two sharp crazy front teeth pointing in different directions.
9. I love her g-tube scar (because I know her life was spared)
10. I love that she knows every Hannah Montana and Jonas Brother Song
11. I love that she asks for her "swimmin' boobies" or floaties when she wants to going swimming
12. I love her snoring
13. I love her little ears that are set lower than typical children
14. I love the gap between her toes that spreads so far it looks like her big toe is going the opposite direction of her foot
15. I love when she see M&M's she gobbles them so fast no one else can eat any
16. I love the way she says, "fellaphant" for elephant
17. I love her low husky voice
18. I love that every time we go anywhere she thinks she is the princess of a parade and must wave at everyone passing by
19. I love that after she says "dtupid" (which she knows is a no no) she will immediately say, "I sowrry mommy"... then turn around and say it again!
20. I love her Buddha belly
21. I love when she comes up to me says, "mommy wait, wait", signs beautiful, gives me a big kiss, then pats me on the back.
I didn't think much about these... I'm sure I could have thought of better ones... and I'm sure if I did it again I might come up with a totally different list. But this is what I love about Sadie right now. If you look at this list you might think a lot of those are what I love about my typical kid.
Her Team name is SADIE'S SUPERCREW... yes, named after her favorite group on last seasons America's Next Dance Crew. She loves that show, loves that group and even flashes the sign while hopping up and down hooting and howling.
So, I sent out a lot of e-mails and I'm very scared that people will not respond or support us. Ever since we've had Sadie- I know people support us and think about us- but I have changed. I have become less involved, more self-centered and I often when someone asks me how I'm doing, I find that I answer them and I forget to ask them in return. I am totally burned out- my house is a wreck, I'm always sick and I just don't have any motivation to do anything except finish the day- loved and alive.
Regardless of how hard life is.. the only thing I would change is bigger bedrooms and closets for the girls and a Maid for me!!! I love my family. Scott is so supportive and kind. He is responsible and charitable. A great husband and father. Kiersten is smart, kind and spiritual. She is gaining confidence everyday and I am thankful for example she provides our family. Madison is talented, independent and confident. She is helpful and always does what she is asked (even if it means it comes with a little free teenage lip service. Hannah is fun-loving, kind, and smart! She is a great big sister and terrific friend. She shows us the value of loving life and enjoying the moment. Sadie is the most beautiful and sweet daughter of God. She is smart, funny, and stubborn. She brings our family together to celebrate when everyone is off in different directions. I love my family and I am grateful for the gifts they bring me.
Thursday, October 9, 2008
The following are from my notes- Sue Buckley said that when teaching a child with ds how to read:
1. Knowing phonics helps you guess or link the spoken languague with the written language.
2. Phonics is helpful as long as the word is already in your vocabulary.
3. The steps to teaching our children to read are a) sight recognizition- whole words b) read books- first with sight words, then adding words to full sentences. c) mix-up your vocabulary- traditional sight words, daily words, fun words.
4. After these steps are followed and your child can identify whole words you can use them to compare and start phonics. ie: they know girl, grape, green by sight but speak the word "go" as "doe".. you can show them the pattern of "g's" and their sound.
Our learning program starts with picture to picture recognition, then word to word, then word to picture. We use matching boards, books, worksheets and words strips. If you are interested in seeing some of the materials you can register for free and download anything you want!! Sadie's picture is on the left bottom corner!!
It all made sense when I was there- if you have any questions you can comment and I will try to expand to my best knowledge.
Wednesday, October 8, 2008
Tuesday, October 7, 2008
I love this one because Madison is always so photogenic (this will be future blackmail material)- this is her trying to be "cool"!!
Monday, October 6, 2008
Visit her post to see what she is giving away in honor of her bogversary.
Sunday, October 5, 2008
He challenged us to "find joy in the journey" because someday "each of us will run out of tomorrows". Also, he told us "don't spend so much time looking ahead and planning for the future that you forget the here and now." I can't tell you how many times I've thought when my house is clean I will be happy. When I've lost more weight I can hang out or go to this place. How many times have I missed out because I was planning for the future??
We should "work today on making memories for the future" and "fill our days with those things we cherish most." After I am done with this I am still going to do several loads of laundry, clean the girls room and fix dinner- but I am going to take a few minutes here and there to hug someone, read a book to a little one, compliment others and maybe write a friend and tell them how much I appreciate them. His last words of counsel..."Shower others with love and gratitude in word and deed". Not only will this help us live in the moment, it will help us build relationships that will strength us in the future.
I challenge each of you to make a goal today that will help you "find joy in the journey!"
Saturday, October 4, 2008
Guess what???? I think Sadie forgot about the "no snack if you don't line up" rule over the summer. We have been in school for 3 1/2 weeks and she has missed snack THREE TIMES already. That's not the worst of it. She has even gone to line up and decided to look Ms. Pam right in the eyes and run off to take another turn at the slide!!!
Also, one day a little boy named Adam didn't like the task they were doing so he decided to throw his book in the middle of the circle. Sadie quickly told him, "No Adam, no throwing!". (This is what they call- "helping classmates keep on task". I call it "being bossy"; nevertheless, it is a new behavior Sadie has acquired this year!) Ms. Pam told Sadie, "I'll help Adam- you go finish your project."
I don't think Sadie liked this to much because she went and got her book, looked Ms. Pam in the eyes, and threw her book in the circle. Can you say stubborn????
I know that this whole 31 for 21 is suppose to be for down syndrome awareness... and I think that means to help others see how wonderful living and caring for a child with ds is. So, know that all of these "behaviors" are exciting, frustrating, interesting, a pain in the butt, but most of all NORMAL 4 YEAR OLD BEHAVIOR!!! And what is more wonderful than looking at your child and seeing beyond the ds?
Friday, October 3, 2008
"No mommy, bats in the sky. That's aweeeeesome!!"
I wonder what they are teaching her at school right now???
Thursday, October 2, 2008
So, when I was in our learning program at the Down Syndrome Association of Orange County last month and heard that "our children just don't do well with phonics. It is best to teach whole language"- I just about freaked!!! I've heard this before, but I haven't really thought about it because Sadie was so far from reading. Well, we are getting ready for Kindergarten and pre-reading is a skill we've been working on.
I knew if I was ever going to get on board with this philosophy I needed to understand the reasoning behind it. They explained that because of the hearing and articulation problems our children most likely have it makes it difficult to really work with phonics. OK... that sounds understandable. I'll try whole words; but, I'm not giving up on phonics!
This month we worked on word to word matching. We have two boards with six words each- Foods and Pets. We also have a book that has a title page just with the word and the following pages have a picture and corresponding word. At the end of each book there is a vocabulary or word building page with all the words listed without pictures.
Let me just testify to you right now- IT WORKS! Sadie was able to match word to word successfully (except a few times when she matched dog and frog- most likely looking only at the ending of the word). She was able to read the books and even sight read a few of the words without pictures in the back of the book. But, here is the real test...
The other day while in a parking lot I heard Sadie repeatedly telling me, "Pets, mommy pets. Pets, pets mommy!" After a few times of hearing her chant this I looked back and noticed her pointing. She was pointing at the Pet City sign. What???? Yes, I have taken her in there and there were pictures of animals on the windows. But, she wasn't pointing at the windows and I never say, "let's go to the pet store". I do say let's go see the animals, dogs, cats, get bunny food, etc. Never Pet Store. I think "Pet" is just a weird and formal word.
Sadie saw the word and recognized it as the word she read in her book. She read a whole word. Could I have taught her phonics to read it... yes, it would take awhile but yes. Do I think phonics are important? YES, YES, YES! Did this experience make both Sadie and I excited to work on reading... YES, YES, YES!!
Just a cute P.S. to this story. Sadie knew how excited and proud we were of her when she read "Pets"-- so the other day she took my hand and lead me to her teacher and said, "Pets, mommy, pets". She wanted me to tell Ms. Katie and Ms. Pam! Good job Sadie!
Wednesday, October 1, 2008
Today, while sitting at the computer Sadie decided she would paint her nails bright green. She was able to unscrew the bottle and paint her nails, hands, legs, and skirt. Before daddy could see what she was up to, she went into the bathroom and unscrewed the nailpolish remover- splashed a little on her hair and clothes, then turned on the water to wash down a little.
After cleaning herself up a bit, she walked to daddy and said, "I'm wet!". Needless to say, we aren't sure if we are more scared that she was able to get into all these toxic things... or proud that she was able to problem solve all by herself.
Don't worry... all toxic chemicals are now in the top cupboard away from little Sadie!!!!!!
Sunday, September 14, 2008
Down's tests are great risk for all babies Screening for syndrome puts healthy foetuses in danger of being miscarried, new research shows
and was published in The Observer, Sunday September 14 2008
Down's tests are great risk for all babiesScreening for syndrome puts healthy foetuses in danger of being miscarried, new research shows
Victoria Macdonald The Observer, Sunday September 14 2008 Article historyRisks in screening unborn babies for Down's syndrome are far higher than previously claimed, new research will say this week. For every three unborn Down's syndrome babies prevented from being born, two healthy babies will be miscarried because of the methods used to detect the condition.
The research claims that, in detecting and preventing the birth of 660 Down's babies, 400 healthy foetuses are lost.
The research casts doubt on the advice and risk assessment given to women when they are deciding whether to undergo the screening and subsequent testing to assess the health of an unborn baby. The National Health Service currently cites a miscarriage rate of between 1 and 2 per cent following the invasive amniocentesis and chorionic villus sampling (CVS) tests, which are offered to expectant mothers who are considered to be 'at risk'.
The authors of the paper - which is being published in the Down's Syndrome Research and Practice journal - say that, while the number of pregnancies diagnosed with Down's syndrome that are terminated, miscarried or born are recorded, no analysis has ever been attempted to determine the number of non-Down's babies lost.
The authors are from the charity Down's Syndrome Education International and might therefore be accused of pursuing their own agenda, but the research has been shown to a number of screening experts who have assessed the findings. In a film to be screened on Channel 4 News at 7pm on Tuesday, Professor Kypros Nicolaides, head of the Harris Birthright Centre at King's College Hospital in south London, will say it is 'completely unacceptable' to lose this number of normal babies.
'Our aim must be to improve the detection of foetuses with Down's in those women that want to have a test and dramatically reduce the number of normal babies that are lost as part of this process of screening,' said Nicolaides, who has been a pioneer in the use of ultrasound for improving screening.
The authors of the study - Frank Buckley and Professor Sue Buckley, a director of the charity who also works at Portsmouth University's psychology department - blame false screening results in the initial blood testing and then the use of subsequent testing, which involves inserting a fine needle through the woman's abdomen and either withdrawing amniotic fluid or taking a tissue sample.
To detect as many Down's babies as possible, the initial screening threshold is set wide, which means that more than 95 per cent of women defined as 'high risk' will not be carrying a baby with the disorder, yet most go on to have the amniocentesis or CVS tests.
The Buckleys and Nicolaides are particularly concerned about how well qualified the staff are who carry out the invasive testing and about their ability to use ultrasound. Studies in the past have shown that loss rates following amniocentesis are six to eight times higher among inexperienced practitioners.
Because no records of non-Down's baby losses have ever been kept, the Buckleys say that their ratio of three to two can only ever be an estimate. But their methodology appears to have been broadly accepted.
'We are looking at the wider question of public health policy,' said the Buckleys. 'The screening for Down's syndrome has consequences for every pregnant woman. You cannot look at it as just a search-and-destroy mission focused on babies with Down's alone.'
About 750 Down's babies are born every year in England and Wales and the Department of Health said the primary aim of screening for the syndrome was to help women make informed decisions about their pregnancies. A spokesman said the programme was based on the latest evidence and supported the most effective test in terms of both the detection rate and the aim of lowering the screen-positive rate 'in order to minimise the number of diagnostic tests'.
The National Institute for Health and Clinical Evidence has recommended a new 'combined screen', which is meant to be more effective in assessing who is at risk, but this has yet to be rolled out nationally.
The Down's charity has now written to the government asking for a thorough reappraisal of the 'purpose, performance and safety' of the screening programme.
· Victoria Macdonald is social affairs correspondent for Channel 4 News.
THE SAD THING ABOUT THIS... I KNOW THERE IS SUCH A LONG WAITING LIST IN THE US FOR ADOPTING KIDS WITH DS. I WOULD LOVE TO SOMEDAY ADOPT ONE- DON'T KNOW IF IT WILL EVER BE RIGHT FOR OUR FAMILY- BUT, IF THEY ONLY THOUGHT ABOUT CARRYING THE BABY TO TERM AND ADOPTING THEM OUT. AND ALL THOSE BABIES LOST TO INCONCLUSIVE TESTS!!!! WHAT A SHAME!!!
Sunday, August 24, 2008
Saturday, August 16, 2008
LANGUAGE CAN HURT
We are moms of young children with developmental disabilities. We are your neighbors, your friends. We see you at baseball games, shopping, church, and the movies. When we think of our children, we use words like “beautiful” and “adorable.”
But often we hear words that hurt, words like the R-word, “retarded.”
People often use the R-word casually to insult and denigrate another person. Because the word is used in those ways, it’s easy to understand why as mothers we are hurt and concerned when we hear it. Over the years we have wondered about (and dreaded) the day when our children would come home after hearing and understanding the insinuation behind someone's use of the R-word.
The casual use of the word is so common that a week doesn't go by that we don't hear it. Every day we are reminded that our children are becoming more aware of their differences and so too are their peers. That day we've dreaded is fast approaching.
When famous movie stars, celebrities our children already know and love, take a hurtful word and tie a funny punch line around it, we need to worry about the fallout. That’s why we’re asking you today to think about the R-word, and the impact it has on the people around you, including our children. And we’d like you to consider a new R-word, RESPECT.
On behalf of our children, we thank you for reading, and for your thoughtfulness
Written By: Nancy Reader copied off of Downsyn.com
Tuesday, August 12, 2008
My friend Kay, who had 3 children and was expecting her 4 in the next two weeks and who grew up with two deaf parents, exclaimed, "Oh, she's so cute... doesn't she have the cutiest toes? It looks like she is giving us a peace sign, " (because of the big gap). She just kept talking and talking about everything... I wondered if she had even heard the news I had just given her.
My friend Alison, who was expecting her first child the next month, sat there with a with a deer caught in headlights look. I don't think she said another word and I was sure she was lost in thoughts of, "if Kari didn't know she was going to have a kid with ds... what about ME?"
And then there was my sweet little friend Ayumi she sat there with tears in her eyes, got up and hugged me and started asking questions about what was next and about her health.
Everyone had a different reaction. I believe those reactions were all born from different experiences they had in life. Each had different upringings and and different personalities. All three were there in the room with me at the same time hearing the same things; but, each of them heard it differently. Kay lived around disabled people all her life. She knew that things would be just fine. She was there to celebrate a new life. Alison was newly married, expecting her first child. They were perfect and nothing seriously life altering had ever happened to her. Ayumi, she grew up in Japan. She grew up in a society where people with disabilities are hidden, killed or shipped away.
I learned that day that I could never control how others reacted. I needed to look beyond their reaction and wonder... why do they think that way? Now today, when we are out and about, I often see how people react to Sadie. Sometimes they turn their heads. Sometimes they look at me with pity. But most of the time, they smile. They see how happy we are. They see the joy and love Sadie brings to our family.
I can't control how others feel. The only thing I can control is my own thoughts and emotions. I can however, hope that maybe as we fully accept and rejoice in our litte ones others will see their beauty and worth. And if not- it won't change how I feel one bit!!!
Saturday, July 26, 2008
I haven't posted this yet because it has been really hard on our family. I think it is why I have gone kinda crazy manic (not that I'm bi-polar- but I feel like it)
My cat Ella was shot by a bb gun last Thursday July 17. My neighbor brought her to us and said she had found her and that Ella wasn't putting any weight on her leg. We thought maybe a dog got her because she thinks she can just play around with them.
She ended up with a bb that chipped the bone and cracked it all the way down. They had to do surgery and put in 6 pins to prevent it from breaking to pieces. Besides two surgeries, lots of medications, weekly re-check visits- the worst part is she is going to be crate bound for 6 weeks and under house arrest for 60 days. This cat loves to go in and out and visit. I hope she doesn't get depressed.
Some people have asked me if I know who did it. NO, but my neighbor has a few ideas... and she's out to get them. Unfortunately, it has caused me to question people and be leary of them. I think that is sad. These are people I live with- who share a space with our family. Anyway, I am hoping it was some goofy teenage boy (nothing against boys) that didn't realize the consequences of his actions. ie- the pain, cost and how it has affected the girls.
Just some background- Last year we found Ella in Palm Springs at our house. She lived under the shed and was starving to death. The rest of her litter and mama had been taken to the animal society. I'm not much of an animal person- mostly because they poop- but I was talked into "saving this cat". It was long before I found out she was the most loving, sweet, kind kitty ever! She is determined to have me meet all of my neighbors... because there is hardly a week without someone calling me and telling me she is 1) sleeping with them on the couch 2) out playing with their dogs 3) following their kids home from school or 4) sleeping in their bed! I've even had one call that said you better come get your cat or my neighbor will steal her.
Some of the neighbors even suggested we have a BBQ block party to raise money to go toward the $5,000 it is going to cost us to cover all this (I would never do that- but it is kinda funny they would suggest it) After we brought her home my next door neighbor came over and cried over her crate. I told her that if I ever break my leg she better cry over my bed or I'm gonna get some kind of complex.
Anyway, please pray Ella will heal quickly and not get depressed!!