DownSyndrome Achieves has recently held two web conferences on the abandonment of DS research. Now there's a title that gets your attention! I wasn't able to fully view either one, but the bottom line is that DS research is grossly underfunded and their is a huge disparity between the amount of funding that goes to fund Down syndrome research versus other conditions. You can sign up for more information at http://dsachieves.org/ .
I also found the National Institutes of Health Research Plan on Down Syndrome. It is an eighty page downloadable pdf. I have it downloaded to iBooks on my iPad for reading while Goldie is at therapy. Remember, information is power!
Sunday, February 20, 2011
Saturday, February 12, 2011
Research Study - Feeding Infants with Down Syndrome
Here is a link to a survey For biological mothers of children with Down syndrome. It doesn't take long to complete and is a great way to use your experience to further research for babies with Down syndrome.
http://www.mdsc.org/index.php?option=com_content&task=view&id=424&Itemid=39
http://www.mdsc.org/index.php?option=com_content&task=view&id=424&Itemid=39
Friday, January 14, 2011
The Highs and Lows of Applying for Waiver Services
One of my grandmother's prized possessions was a dining room suite she was given from her sister. The story goes that it was an expensive antique that her sister didn't have space for after her divorce so she gave it to my grandparents for helping her out. It's four pieces comprised 70% of the space in her dining room. The wood was thick and dark and carved in a gothic style that was completely out of place in her little cape cod home. In addition to the table was a long buffet against one wall and a china cupboard in the corner.
What I remember most about this table is not the carefully planned holiday meals. It is the layers of tablecloths, placemats and finally papers. Growing up I would walk around the table wondering about all the papers, mail, index cards, and sticky notes that were neatly laid all around it. In the adjacent room was a tiny office with a bulletin board and filing cabinet. The bulletin board was filled with more index cards and a calendar. My grandmother, like myself, was the type of person who needed to see what she had to do next. I think we would be called pile-ers.
When my husband and I were dating he mentioned how unorganized he thought this was. He couldn't understand why someone so neat and tidy as my grandmother would allow her antique dining room set to be blanketed with papers.
Today, my husband I both understand her system. She had a child with special needs.
I'm sitting here with 12 pages of notes detailing phone calls, agencies, numbers etc... In the last two months I've made close to 30 phone calls. All in search of services and supports for Goldie. Our family needs respite care. To get that she has to qualify for waiver services. That requires a psychological evaluation and an IQ test. To make it more complicated "they" can't find a doctor that will take Goldie's medicaid. The details of why are so tedious I don't even want to type them.
I'd rather talk about paper. I write everything down while on the phone. A name and number isn't enough. I need to know why I'm calling that person. I need to document what I'm told. Which brought me to my low point of the day. (Ironically,it wasn't holding my daughter while she wretched into a bucket at 3am.) It was the woman at the Department of Public Welfare who bore the brunt of my sleepless night. She casually told me Goldie's medicaid case was closing tomorrow and she wouldn't be covered anymore. No reason given. Then she began rattling off names and numbers and what I should ask these people to do. I kept telling her to slow down. (I was nursing Hank in one arm and writing with the other.) Finally, I began to cry and screamed at her to just STOP. "I have 4 kids, I can't remember it ALL. I have to write everything down."
What good does is it do me to call Mrs. Taylor if I can't remember that she is the person with the special list of doctors that will accept medicaid.
Except, she's not. She explained that yes, she has a list, but they probably won't take Goldie's medicaid. Then, the best part of my day, was when she told me "the system is horrible at best". At last, someone who will admit it!
(I just want to add that Goldie's medicaid does not run out tomorrow. She has another 30 days of coverage and they already have her renewal information in the system. So, she is good to go. No, worries.)
What I remember most about this table is not the carefully planned holiday meals. It is the layers of tablecloths, placemats and finally papers. Growing up I would walk around the table wondering about all the papers, mail, index cards, and sticky notes that were neatly laid all around it. In the adjacent room was a tiny office with a bulletin board and filing cabinet. The bulletin board was filled with more index cards and a calendar. My grandmother, like myself, was the type of person who needed to see what she had to do next. I think we would be called pile-ers.
When my husband and I were dating he mentioned how unorganized he thought this was. He couldn't understand why someone so neat and tidy as my grandmother would allow her antique dining room set to be blanketed with papers.
Today, my husband I both understand her system. She had a child with special needs.
I'm sitting here with 12 pages of notes detailing phone calls, agencies, numbers etc... In the last two months I've made close to 30 phone calls. All in search of services and supports for Goldie. Our family needs respite care. To get that she has to qualify for waiver services. That requires a psychological evaluation and an IQ test. To make it more complicated "they" can't find a doctor that will take Goldie's medicaid. The details of why are so tedious I don't even want to type them.
I'd rather talk about paper. I write everything down while on the phone. A name and number isn't enough. I need to know why I'm calling that person. I need to document what I'm told. Which brought me to my low point of the day. (Ironically,it wasn't holding my daughter while she wretched into a bucket at 3am.) It was the woman at the Department of Public Welfare who bore the brunt of my sleepless night. She casually told me Goldie's medicaid case was closing tomorrow and she wouldn't be covered anymore. No reason given. Then she began rattling off names and numbers and what I should ask these people to do. I kept telling her to slow down. (I was nursing Hank in one arm and writing with the other.) Finally, I began to cry and screamed at her to just STOP. "I have 4 kids, I can't remember it ALL. I have to write everything down."
What good does is it do me to call Mrs. Taylor if I can't remember that she is the person with the special list of doctors that will accept medicaid.
Except, she's not. She explained that yes, she has a list, but they probably won't take Goldie's medicaid. Then, the best part of my day, was when she told me "the system is horrible at best". At last, someone who will admit it!
(I just want to add that Goldie's medicaid does not run out tomorrow. She has another 30 days of coverage and they already have her renewal information in the system. So, she is good to go. No, worries.)
Thursday, January 13, 2011
Coincidence
It's probably not a coincidence that my last blog post was the day before my husband gave me an early Christmas present. Just to prove that men might really be listening when we think they've tuned us out, he gifted me with an iPad. It feels good to be the luckiest girl I know! To top it off, he took charge of the kids for the day so I could play with it. I love it, Goldie loves it, even Hank loves it. But, my PC is definitely jealous. The iPad is so fast, quiet, and portable. It's the clear choice over the computer with a fan that never shuts off and runs so loud that you have to turn it off to watch television.
I'll do a brief recap of the other things that have kept me from sitting at the keyboard. Sick, Christmas, skin cancer (I'm ok, its been removed), Hank's FIRST birthday, cleaning and organizing with super husband, potty training, Mary Poppins, and now more sick. I left an item off of this list. It's something I've been working on for a couple months now and it needs its own post. However, don't get too excited, its about the dirty details of services and the system. Really, I'm writing it more for my sanity than anything else.
I'll do a brief recap of the other things that have kept me from sitting at the keyboard. Sick, Christmas, skin cancer (I'm ok, its been removed), Hank's FIRST birthday, cleaning and organizing with super husband, potty training, Mary Poppins, and now more sick. I left an item off of this list. It's something I've been working on for a couple months now and it needs its own post. However, don't get too excited, its about the dirty details of services and the system. Really, I'm writing it more for my sanity than anything else.
Wednesday, December 15, 2010
Last Call for Shutterfly Holiday Cards!!
When I saw Shutterfly's Holiday Card promotion giving bloggers 50 free holiday cards I signed up right away. And that was as far as things got until this morning. I had Christmas ensembles laid out for each of us to wear and Goldie's Christmas party. Then Children's Hour was cancelled and that gave me the time I needed. Imagine my surprise when I logged into Shutterfly and saw that this promotion ends TONIGHT at midnight! Do I have good luck or what?
I have been a customer of Shutterfly for 8 years. I love their photobooks (Goldie really loves them), cards and invitations. I enjoy being able to pick and choose what I want online and not have to stand in the middle of store with 4 kids running circles around me. If I'm lucky. Sometimes, they just take off in straight line.
Here is our Christmas card from 2008:
Here is a holiday card/birth announcement from last year. I just couldn't send out cards until all my children were here!
I've been browsing this year's Christmas cards and here is what I'm looking at so far:
Sharing the Love or Our Shining Stars
I have been a customer of Shutterfly for 8 years. I love their photobooks (Goldie really loves them), cards and invitations. I enjoy being able to pick and choose what I want online and not have to stand in the middle of store with 4 kids running circles around me. If I'm lucky. Sometimes, they just take off in straight line.
Here is our Christmas card from 2008:
Plaid Christmas
Shop Shutterfly for unique, personalized Christmas photo cards.
View the entire collection of cards.
Here is a holiday card/birth announcement from last year. I just couldn't send out cards until all my children were here!
Family Snowfall Teal Christmas
Create beautiful photo Christmas cards at Shutterfly.com.
View the entire collection of cards.
I've been browsing this year's Christmas cards and here is what I'm looking at so far:
Sharing the Love or Our Shining Stars
Tuesday, December 14, 2010
Homeschooler with Down Syndrome Signing "It's About the Cross"
This video is from a mom on my "local" homeschoolers with special needs email list. She is graciously letting me share her beautiful daughter Abigail signing "It's About the Cross" by The Ball Brothers.
Sometimes it is hard for me to imagine Goldie's future, both near and distant, because there are so many possibilities on a path that is always changing. Just when I was lamenting over Goldie's lack of fine motor skills in relation to her signing, this popped up on my screen. Watching Abigail reminded me to just be patient and that there are bigger things than how well my daughter can sign.
Sometimes it is hard for me to imagine Goldie's future, both near and distant, because there are so many possibilities on a path that is always changing. Just when I was lamenting over Goldie's lack of fine motor skills in relation to her signing, this popped up on my screen. Watching Abigail reminded me to just be patient and that there are bigger things than how well my daughter can sign.
Thursday, December 2, 2010
Homeschool Preschool - Color Sorting
Goldie has been keeping me very busy this fall doing all kinds of preschooly things. (I've been heating my kitchen with my laminator!) Goldie's latest achievement is sorting by color. Sorting is an important part of an early math curriculum. We started working on this around her second birthday at the urging of her vision therapist. I didn't think she was ready for actual sorting so I focused more on just learning colors. Once Goldie was able to sign her colors (thank-you Signing Time) I was able to know how well she could identify and label her colors.
First I tried having her sort with Busy Bugs. But, she was so distracted by all the different types of bugs that she didn't care what color they were. Spider, caterpillar, fly, etc...
Then I had a lightbulb moment when Swatcho left her Sorry! game on the kitchen table.
Sure enough, without the distracting bugs, Goldie was able to sort the red from the blue and place them on the correct squares. Another important math concept is one to one correspondence.
After this, I gave Goldie red, yellow, and blue buckets with a pile of colored cubes. She shocked me by immediately sorting them out. I had to run and get green and white bowls. If more than one color was stuck together she would pull them apart and place each cube in its correct container.
Moments like these just blow me away. I find myself thinking back to when Goldie was born and being told she had Down syndrome and then at a year old when I was told she was legally blind. I wondered then if these days would ever come. Now, I see her love of learning and how she wakes up one day and just does something she's never done, but acts like she's always known how to do it. And my heart overflows.
First I tried having her sort with Busy Bugs. But, she was so distracted by all the different types of bugs that she didn't care what color they were. Spider, caterpillar, fly, etc...
Then I had a lightbulb moment when Swatcho left her Sorry! game on the kitchen table.
After this, I gave Goldie red, yellow, and blue buckets with a pile of colored cubes. She shocked me by immediately sorting them out. I had to run and get green and white bowls. If more than one color was stuck together she would pull them apart and place each cube in its correct container.
Moments like these just blow me away. I find myself thinking back to when Goldie was born and being told she had Down syndrome and then at a year old when I was told she was legally blind. I wondered then if these days would ever come. Now, I see her love of learning and how she wakes up one day and just does something she's never done, but acts like she's always known how to do it. And my heart overflows.
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