Spotlight on Advocacy

The GOLDEN ADVOCATE AWARD is given to bloggers who have gone above and beyond to educate and advocate for people who have special needs.

I recently received The Golden Advocate Award from the very awesome ds.mama (and she's not just awesome because she gave me the award!). Go here to read the very nice things she said about me and to see how her blog is helping to demystify Down syndrome (and parenting a child with Ds) while providing a welcoming and educational place for parents with a new diagnosis.

Like many other Golden Advocate recipients, I can think of a handful of other bloggers who are more than deserving of this honor. I love how the content and personality of each blog is unique to the blog owner/family. There are so many people doing great things for our kids. There's a little something for everyone out here in blogland!

There are the obvious: Jennifer Graf Groneberg, Kathryn Soper and Patricia Bauer. Each of these women are large-scale, public advocates for people with disabilities doing important and meaningful work for our children, and for all of us.

There are two other people--who may be lesser known on a national scale, and who I am nominating for this honor--who jump out in my mind as going "above and beyond" to educate and inspire--to get the word out that the time is right to take the reigns and make our own way toward opening doors for all of our children. (Our children are opening doors for themselves, too.)

My previous post touches barely the tip of the iceberg as to what Jennifer from Three's a Charm is doing to push the cause forward. Her "i did it" campaign is just one example of Jen's creativity and advocacy efforts. I'm also nominating Jen for her willingness to share her experiences in an incredibly honest way, and for her clear desire to help others understand the "up side" of Down syndrome. She makes a point throughout her blog to make mention of the potential that people with Ds possess, and of the many gifts they bring to the world.

From making homemade baby food for her son, Joaquin (and otherwise providing her entire family a wholesome diet), to collaborating with The Institutes to assist Joaquin's development, she is giving her son(s) every opportunity to live a full, happy and healthy life. Thank you, Jennifer, for all you do!

I'm also nominating Lito of The Accidental Advocate for his sharp analytical skills, vision and dedication to making things better for people with disabilities. Lito believes "that the status quo is just not good enough, and that there is something more, something better ahead for our children living with Down syndrome".

We all benefit from his interests in research and legislation which impact the Ds population, education, health care, parenting, and other issues and trends affecting people with disabilities and their families.

In addition to managing his blog, Lito has also recently founded The Central Ohio Down Syndrome Society (CODSS), which is already becoming an incredibly important organization for us locally and is positioned to have an even wider impact and significance with it's clearly defined vision and missions. Follow the above link for an overview of the leading-edge research and clinical trials that CODSS is backing, as well as to learn more about this new, forward-thinking organization. Thank you, Lito, for your hard work and dedication!

Visit Rejenerations, home of the Golden Advocate Award, to learn specifics about accepting this award and passing it along.


Stay tuned for more discussion on Disability is Natural.

Spotlight on Advocacy

The GOLDEN ADVOCATE AWARD is given to bloggers who have gone above and beyond to educate and advocate for people who have special needs.

I recently received The Golden Advocate Award from the very awesome ds.mama (and she's not just awesome because she gave me the award!). Go here to read the very nice things she said about me and to see how her blog is helping to demystify Down syndrome (and parenting a child with Ds) while providing a welcoming and educational place for parents with a new diagnosis.

Like many other Golden Advocate recipients, I can think of a handful of other bloggers who are more than deserving of this honor. I love how the content and personality of each blog is unique to the blog owner/family. There are so many people doing great things for our kids. There's a little something for everyone out here in blogland!

There are the obvious: Jennifer Graf Groneberg, Kathryn Soper and Patricia Bauer. Each of these women are large-scale, public advocates for people with disabilities doing important and meaningful work for our children, and for all of us.

There are two other people--who may be lesser known on a national scale, and who I am nominating for this honor--who jump out in my mind as going "above and beyond" to educate and inspire--to get the word out that the time is right to take the reigns and make our own way toward opening doors for all of our children. (Our children are opening doors for themselves, too.)

My previous post touches barely the tip of the iceberg as to what Jennifer from Three's a Charm is doing to push the cause forward. Her "i did it" campaign is just one example of Jen's creativity and advocacy efforts. I'm also nominating Jen for her willingness to share her experiences in an incredibly honest way, and for her clear desire to help others understand the "up side" of Down syndrome. She makes a point throughout her blog to make mention of the potential that people with Ds possess, and of the many gifts they bring to the world.

From making homemade baby food for her son, Joaquin (and otherwise providing her entire family a wholesome diet), to collaborating with The Institutes to assist Joaquin's development, she is giving her son(s) every opportunity to live a full, happy and healthy life. Thank you, Jennifer, for all you do!

I'm also nominating Lito of The Accidental Advocate for his sharp analytical skills, vision and dedication to making things better for people with disabilities. Lito believes "that the status quo is just not good enough, and that there is something more, something better ahead for our children living with Down syndrome".

We all benefit from his interests in research and legislation which impact the Ds population, education, health care, parenting, and other issues and trends affecting people with disabilities and their families.

In addition to managing his blog, Lito has also recently founded The Central Ohio Down Syndrome Society (CODSS), which is already becoming an incredibly important organization for us locally and is positioned to have an even wider impact and significance with it's clearly defined vision and missions. Follow the above link for an overview of the leading-edge research and clinical trials that CODSS is backing, as well as to learn more about this new, forward-thinking organization. Thank you, Lito, for your hard work and dedication!

Visit Rejenerations, home of the Golden Advocate Award, to learn specifics about accepting this award and passing it along.


Stay tuned for more discussion on Disability is Natural.

Bridget Did It

Nike's hugely successful ad campaign has been telling us for quite some time now to just do "it".

It's about time the Ds community came back with our own slogan. Our own ad campaign.

Three simple words that mean so much. Accomplishments that are celebrated and cherished. All the simple little things and the big things too. First smiles, first steps, first words. Things we used to take for granted and never will again.

-Jennifer of Three's a Charm

Jennifer had the great idea to take "this small little phrase that means something so big" and make up a limited quantity of infant and toddler tees (in sizes 6/12 mo, 12/18 mo and 18/24 mo) with the slogan "i did it" on the front. If you'd like to help Jennifer and her son Joaquin get the word out that kids with Ds can achieve (and often end up opening many eyes in the process), buy one of these adorable baby tees from Jen for $21 (in honor of T21). She'll use the money to purchase a copy of the book Gifts 2 and donate it to a local hospital, geneticists office, or pediatrician's office to help spread the word to new parents that their child will do it, too. For more details, check out the post that began it all: i did it.

Miss Bridget wears her shirt for all the things she's accomplished. What did Bridget do? What didn't Bridget do :)?

She covered all the basics in her first couple of years: she learned to nurse after four months of bottle feeding (and needing thickened milk); she learned to pass objects from hand to hand; babble; wave; clap; make her needs known; sit; put things in containers; pull to standing; cruise and walk. In her first couple of years, Bridget also learned to steal hearts and to steal make-up off my vanity. She learned to console, to climb out of the bathtub and to cough into her arm to reduce the spread of germs. She learned to fake a cry, burp and sneeze. She learned to use sign language, do a great "shoulder shimmy" and draw "dots" with a pen. She learned to blow bubbles, feed herself with a spoon and drink from a straw. She learned how to put on a hat, a tutu and a Darth Vader mask. She learned how to take off all of her clothes.

Recently, Bridget has learned to: string beads on a necklace, erase her Magna Doodle and turn on her radio. She's now able to march, walk on her tiptoes and kick a ball. She has used the potty successfully. She's learned to say, "STOP" and hold out her hand like a traffic cop. She's learned to say "Aw, CUTE!".

She has made friends in the neighborhood, made her family proud, and made believers out of people who thought or said she couldn't.

Bridget Did It

Nike's hugely successful ad campaign has been telling us for quite some time now to just do "it".

It's about time the Ds community came back with our own slogan. Our own ad campaign.

Three simple words that mean so much. Accomplishments that are celebrated and cherished. All the simple little things and the big things too. First smiles, first steps, first words. Things we used to take for granted and never will again.

-Jennifer of Three's a Charm

Jennifer had the great idea to take "this small little phrase that means something so big" and make up a limited quantity of infant and toddler tees (in sizes 6/12 mo, 12/18 mo and 18/24 mo) with the slogan "i did it" on the front. If you'd like to help Jennifer and her son Joaquin get the word out that kids with Ds can achieve (and often end up opening many eyes in the process), buy one of these adorable baby tees from Jen for $21 (in honor of T21). She'll use the money to purchase a copy of the book Gifts 2 and donate it to a local hospital, geneticists office, or pediatrician's office to help spread the word to new parents that their child will do it, too. For more details, check out the post that began it all: i did it.

Miss Bridget wears her shirt for all the things she's accomplished. What did Bridget do? What didn't Bridget do :)?

She covered all the basics in her first couple of years: she learned to nurse after four months of bottle feeding (and needing thickened milk); she learned to pass objects from hand to hand; babble; wave; clap; make her needs known; sit; put things in containers; pull to standing; cruise and walk. In her first couple of years, Bridget also learned to steal hearts and to steal make-up off my vanity. She learned to console, to climb out of the bathtub and to cough into her arm to reduce the spread of germs. She learned to fake a cry, burp and sneeze. She learned to use sign language, do a great "shoulder shimmy" and draw "dots" with a pen. She learned to blow bubbles, feed herself with a spoon and drink from a straw. She learned how to put on a hat, a tutu and a Darth Vader mask. She learned how to take off all of her clothes.

Recently, Bridget has learned to: string beads on a necklace, erase her Magna Doodle and turn on her radio. She's now able to march, walk on her tiptoes and kick a ball. She has used the potty successfully. She's learned to say, "STOP" and hold out her hand like a traffic cop. She's learned to say "Aw, CUTE!".

She has made friends in the neighborhood, made her family proud, and made believers out of people who thought or said she couldn't.

Disability is Natural, Part I

I've been doing a lot of reading, watching and thinking this summer. Since Bridget turned three in July, we have had a gap in services provided by the county--which we've left, or rather were dismissed from, on the day of Bridget's third birthday--and the local school system--which we are about to enter.

We've seen a lot of growth in Bridget over the last couple of months. A break in services--and a break from the general routine of the school year--has been valuable in many ways for us.

If you've been reading here, you've seen some of my thoughts on acceptance of circumstance; appreciating gifts--what each person brings to the table, and all the layers in people and in our lives; seeing potential in all people; and encouraging new attitudes toward "disability". I am coming to some conclusions about things I've been thinking about since Bridget was born and am finally able to put some of these ideas and theories into words.

I posted about disability being a natural--and valuable--part of life just after I began reading Disability is Natural by Kathie Snow. (Read the post here.) The book brought up many things I'd already been mulling over in my own mind. Particularly because we've been through so much evaluation to complete the transition process, I've been wondering how "the system" sees Bridget, and how that has (and will continue to have) an impact on the way she's perceived (and therefore what opportunities she's offered, how she is treated, etc.).

I've realized that, in many ways, limits have been set for Bridget long before she's had a chance to say anything about it.

Without question, there are some exceptions to the notion that doctors and therapists buy into prognoses and labels that go along with a diagnosis. There are people in the medical field and the social service system who not only believe in helping kids to meet their full potential, but also believe that a child's potential is determined by the individual child and not the diagnosis.

Many of our kids have been helped greatly by doctors and/or therapists. Unfortunately, we've all also seen the pitfalls of buying into the "medical model" or the "service system mentality" and the limits that each sets on our children, sometimes inadvertently. It is strange how things that are meant to help end up having great potential to also harm.

As a parent of a child with a disability, it is important to frame your own perspective on what your child's diagnosis means to you, and to be aware of the implications of your own thoughts and actions in planning and managing your child's care.

Disability is Natural should be required reading for parents with a new diagnosis (Kathie Snow has a great website, too). I plan to cover bits and pieces of the book in my next several posts, so stay tuned if you're interested in this topic. Something I found particularly interesting follows:

The Death of Dreams

Initially, all parents have dreams for their children. We have pictures in our heads of what a child will look like, what type of family we'll have, and so forth. Fathers dream of playing ball with a son or protecting their little princess from high school Romeos. Mothers dream of sweet kisses and hugs, and fulfilling the girlhood dream of being a mother. Many parents dream big, long dreams about their children: college graduation, a wedding twenty years down the road, and grandchildren. In the time it takes the doctor to tell us our child's diagnosis, however, those dreams evaporate before our eyes. Our world is shaken to the core. Some of us become numb, some of us try to be brave, and some of us become angry. The hope, the dreams, and the bright future we pictured for our child is gone, replaced by a very scary unknown world.

In describing the prognosis, the physician gives parents many different bits of information, depending on the disability. But almost all predictions have one thing in common: we're told far more about what our children will not accomplish, than what they will. We're given the "bad" news: our children's perceived deficits far exceed their abilities....

Before any of our precious children have had an opportunity to define themselves, they've been defined by their disability labels. There is no greater loss.

And later in the same chapter:

From Dark Grief to Bright Reality

The medical model is the genesis of parental grief. Diagnoses, prognoses and labels attached to our children plunge us into a dark world. Then the promise of services and treatments temporarily lifts us from the darkness. But when we reject the medical model and the negative stereotypes presented by doctors and accepted by society, we can anchor ourselves to the reality that our children have bright futures and unlimited potential...And this belief has a greater influence over your child's success than any disability label. This is so important...Your belief in your child and his potential has a greater influence over his success than his disability.

Your turn: Please share about one or more of the following topics. Were you given a positive or negative view of your child's prognosis at the time of diagnosis? What conclusions have you reached about the role of doctors and therapists in your child's life? What experiences have you had with either medical professionals or therapists and teachers that have made you think that others are working (1) for your child or (2) inadvertently holding him/her back? What lessons have you learned--how have you pushed aside negative stereotypes and come to see the potential in your child?

Next up: "disability" and the service system

Disability is Natural, Part I

I've been doing a lot of reading, watching and thinking this summer. Since Bridget turned three in July, we have had a gap in services provided by the county--which we've left, or rather were dismissed from, on the day of Bridget's third birthday--and the local school system--which we are about to enter.

We've seen a lot of growth in Bridget over the last couple of months. A break in services--and a break from the general routine of the school year--has been valuable in many ways for us.

If you've been reading here, you've seen some of my thoughts on acceptance of circumstance; appreciating gifts--what each person brings to the table, and all the layers in people and in our lives; seeing potential in all people; and encouraging new attitudes toward "disability". I am coming to some conclusions about things I've been thinking about since Bridget was born and am finally able to put some of these ideas and theories into words.

I posted about disability being a natural--and valuable--part of life just after I began reading Disability is Natural by Kathie Snow. (Read the post here.) The book brought up many things I'd already been mulling over in my own mind. Particularly because we've been through so much evaluation to complete the transition process, I've been wondering how "the system" sees Bridget, and how that has (and will continue to have) an impact on the way she's perceived (and therefore what opportunities she's offered, how she is treated, etc.).

I've realized that, in many ways, limits have been set for Bridget long before she's had a chance to say anything about it.

Without question, there are some exceptions to the notion that doctors and therapists buy into prognoses and labels that go along with a diagnosis. There are people in the medical field and the social service system who not only believe in helping kids to meet their full potential, but also believe that a child's potential is determined by the individual child and not the diagnosis.

Many of our kids have been helped greatly by doctors and/or therapists. Unfortunately, we've all also seen the pitfalls of buying into the "medical model" or the "service system mentality" and the limits that each sets on our children, sometimes inadvertently. It is strange how things that are meant to help end up having great potential to also harm.

As a parent of a child with a disability, it is important to frame your own perspective on what your child's diagnosis means to you, and to be aware of the implications of your own thoughts and actions in planning and managing your child's care.

Disability is Natural should be required reading for parents with a new diagnosis (Kathie Snow has a great website, too). I plan to cover bits and pieces of the book in my next several posts, so stay tuned if you're interested in this topic. Something I found particularly interesting follows:

The Death of Dreams

Initially, all parents have dreams for their children. We have pictures in our heads of what a child will look like, what type of family we'll have, and so forth. Fathers dream of playing ball with a son or protecting their little princess from high school Romeos. Mothers dream of sweet kisses and hugs, and fulfilling the girlhood dream of being a mother. Many parents dream big, long dreams about their children: college graduation, a wedding twenty years down the road, and grandchildren. In the time it takes the doctor to tell us our child's diagnosis, however, those dreams evaporate before our eyes. Our world is shaken to the core. Some of us become numb, some of us try to be brave, and some of us become angry. The hope, the dreams, and the bright future we pictured for our child is gone, replaced by a very scary unknown world.

In describing the prognosis, the physician gives parents many different bits of information, depending on the disability. But almost all predictions have one thing in common: we're told far more about what our children will not accomplish, than what they will. We're given the "bad" news: our children's perceived deficits far exceed their abilities....

Before any of our precious children have had an opportunity to define themselves, they've been defined by their disability labels. There is no greater loss.

And later in the same chapter:

From Dark Grief to Bright Reality

The medical model is the genesis of parental grief. Diagnoses, prognoses and labels attached to our children plunge us into a dark world. Then the promise of services and treatments temporarily lifts us from the darkness. But when we reject the medical model and the negative stereotypes presented by doctors and accepted by society, we can anchor ourselves to the reality that our children have bright futures and unlimited potential...And this belief has a greater influence over your child's success than any disability label. This is so important...Your belief in your child and his potential has a greater influence over his success than his disability.

Your turn: Please share about one or more of the following topics. Were you given a positive or negative view of your child's prognosis at the time of diagnosis? What conclusions have you reached about the role of doctors and therapists in your child's life? What experiences have you had with either medical professionals or therapists and teachers that have made you think that others are working (1) for your child or (2) inadvertently holding him/her back? What lessons have you learned--how have you pushed aside negative stereotypes and come to see the potential in your child?

Next up: "disability" and the service system

We're not the Jolie-Pitts

...but Chris and I have always wanted a rainbow family.

When we were dating, I remember Chris asking me if I would want to adopt children if we couldn't have kids of our own. Definitely, I said. He asked, What would you think about adopting kids of different nationalities? I could see that, I said.

I have no idea why he was thinking in those terms in his early twenties, but I love that about him--he always has a unique and interesting angle on things and he's incredibly open-minded.

It turns out that we are living his dream. We didn't adopt, but have created our very own rainbow family inadvertently.

Our group is not made up of people with different skin color or ethnic background, but we've got all the personality and layers--and the essential quality--that Chris was envisioning.

Sure, most of our kids have big, brown eyes (from Chris, not me) and a few other similar features. We've got five kids who are genetically linked, but who each bring something unique to the table.

We've got boys and girls, all ages and stages, all shapes and sizes. We've got typically developing kids and kids with delays. We've got the entire range--some of our children have natural athletic ability and some are uncoordinated, some of our kids are intellectually gifted and others are cognitively impaired. We have traditional thinkers and kids with an unconventional approach to everything.

We've got a little bit of a lot of things :).

And that's what families are all about. Love yours for all the twists and folds--for all the texture and depth--that each person adds to the whole. Embrace the rainbow...

We're not the Jolie-Pitts

...but Chris and I have always wanted a rainbow family.

When we were dating, I remember Chris asking me if I would want to adopt children if we couldn't have kids of our own. Definitely, I said. He asked, What would you think about adopting kids of different nationalities? I could see that, I said.

I have no idea why he was thinking in those terms in his early twenties, but I love that about him--he always has a unique and interesting angle on things and he's incredibly open-minded.

It turns out that we are living his dream. We didn't adopt, but have created our very own rainbow family inadvertently.

Our group is not made up of people with different skin color or ethnic background, but we've got all the personality and layers--and the essential quality--that Chris was envisioning.

Sure, most of our kids have big, brown eyes (from Chris, not me) and a few other similar features. We've got five kids who are genetically linked, but who each bring something unique to the table.

We've got boys and girls, all ages and stages, all shapes and sizes. We've got typically developing kids and kids with delays. We've got the entire range--some of our children have natural athletic ability and some are uncoordinated, some of our kids are intellectually gifted and others are cognitively impaired. We have traditional thinkers and kids with an unconventional approach to everything.

We've got a little bit of a lot of things :).

And that's what families are all about. Love yours for all the twists and folds--for all the texture and depth--that each person adds to the whole. Embrace the rainbow...