Thursday, September 24, 2009

Bridget's Light

I've thought a lot recently about how best to explain and describe the impact Bridget has had on our lives. And then I realized I'd already written it. This is the essay I wrote, exactly as it appears in Gifts 2. This says it all...

Bridget’s Light



When our oldest two children were very small, we bought and renovated a traditional saltbox-style home to accommodate our growing family. The house sat on a gorgeous, deeply wooded lot which included a pleasing assortment of redbud, oak and buckeye trees. It took us a little while to figure out that while the house itself was perfect for us, the heavily treed lot, which initially attracted us to the property, meant that there were no visible sunsets and dark rooms even on the brightest of days.

When we designed our current home, I wanted windows in every room. “Light is vital,” I said to our architect as he drew up plans. “I don’t want to have to use lamps during the day any more.” He took the challenge seriously, as each and every contractor we met during the building process asked the same bewildered question: “You have how many windows?” It might’ve seemed excessive to some, but not to us. We’d lived in "the dark house" for several years before we fully recognized how much we crave and need natural light. It was several more years still before we realized that light itself would become a central theme in our lives.


As soon as we moved in to “the bright house,” everything seemed lighter in all senses of the word. Our four children (all under age six) were growing and thriving. We felt a new sense of buoyancy, a lightheartedness, and an unrestricted energy in our household. But as it turns out, the same windows that let light into a home can also let the darkness inside. Shortly after we moved, just as our lives were in full swing, I was diagnosed with a life-threatening brain tumor. Our world seemed to stop spinning, and dusk set in. It was an overwhelming, scary and sad time, and I secretly wondered whether night was closer than I cared to imagine.


The surgery to remove the tumor took my hearing on one side, but there were no other complications. I not only recovered quickly, but became pregnant with our fifth child just over a year later. We were thrilled and easily slipped back into a happy existence. Yet we were soon once again reminded that while windows provide openings to the outside world, they also let the outside world
in.

When Bridget was born with Down syndrome, none of us knew what to think, or how to feel. We had no experience with Down syndrome. We only knew the stereotypes, which brought sadness and concern. We grieved the loss of the happy time it should have been, and the loss of the baby we thought we were going to meet. But when we saw Bridget in the NICU for the first time, Chris and I both felt the heaviness and uncertainty begin to fade. We’d come around the corner from the nurses’ station to see her laying on a tiny hospital bed, covered in strong, unforgiving light from the warming lamps above. The lighting reminded me of a museum display featuring a rare and valuable piece of jewelry. As Bridget lay beneath it, nearly naked and fully illuminated, our hearts and lives were also laid bare. The light forced us to look at her, at ourselves, and our future. We watched her sleep peacefully, deserving and needing to be loved—just as any other baby. In that moment we realized Bridget is whole. We began to see her not as a child with a disability, but as a person, who would grow to express her own interests, talents, hopes and dreams—just as any other person. We began to understand her potential.


When the warming lights were turned off, there was still a glow that surrounded Bridget. She was radiant. It was unexpected, and we were both moved to tears when we realized that
she was the light.
***

The little girl with wispy ponytails who plays by my feet today does not yet know that I am writing about her. I’ve spent many hours these past few years telling our story, trying to show others that Down syndrome is not something to fear.

Down syndrome does not define Bridget. It is a part of her genetic make-up that is distinctly hers, but it is not her—and it doesn’t even begin to explain who she is. Bridget is a little masterpiece, with texture and depth and richness to spare. She gives freely of her effort and love. She is spirited and vibrant, content without being complacent. Others may feel that she has much to overcome, but Bridget doesn't seem to see it that way. In her we see honesty, lack of pretense, and uninhibited determination as she goes about her life with vigor and jubilance.


It’s interesting how a small amount of extra genetic material in Bridget translates into so much extra in all of our lives. Every day she encourages us to accept our own unique timelines for growth, and reminds us that what matters most isn’t what we achieve and when, but how true to ourselves we remain through the process of becoming. We’ve learned to accept that life is not always neat and tidy (or easy), and that plans can change mid-flight. We’ve also learned that situations we didn’t ask for or want often provide something we need.


A world turned upside-down reveals much about our perspective—it forces us to evaluate ourselves, the assumptions we make about one another, and our beliefs about ideals like success, beauty and perfection. And while Bridget has taught us significant life lessons, it is the small moments in everyday living with her—the countless little bursts—that fill our lives with meaning and joy. We spend our days together reflecting and accepting, learning, laughing, and loving. As a family, we’ve realized that we are not uncomfortable with disability; that we are not afraid of the darkness; and that everything seems better with more windows—and with Bridget in our lives. She has restored our sense of buoyancy.


Since our current home has natural light in abundance, it’s easy to forget that we once lived in a house with very little light. Likewise, it’s difficult to remember life before Bridget. What began with the bright light above her hospital bed and continued as her inner radiance has now developed into a substantial force of its own. Sometimes Bridget’s light is a high beam that illuminates clearly and at great range; at other times, it’s a gentle glow. But it is constant. With Bridget in our lives, our many-windowed home is luminous and vibrant once again. And even after night falls, sparkles are everywhere, filling every room and glittering with tiny flashes of light.

***

Bridget's Light

I've thought a lot recently about how best to explain and describe the impact Bridget has had on our lives. And then I realized I'd already written it. This is the essay I wrote, exactly as it appears in Gifts 2. This says it all...

Bridget’s Light



When our oldest two children were very small, we bought and renovated a traditional saltbox-style home to accommodate our growing family. The house sat on a gorgeous, deeply wooded lot which included a pleasing assortment of redbud, oak and buckeye trees. It took us a little while to figure out that while the house itself was perfect for us, the heavily treed lot, which initially attracted us to the property, meant that there were no visible sunsets and dark rooms even on the brightest of days.

When we designed our current home, I wanted windows in every room. “Light is vital,” I said to our architect as he drew up plans. “I don’t want to have to use lamps during the day any more.” He took the challenge seriously, as each and every contractor we met during the building process asked the same bewildered question: “You have how many windows?” It might’ve seemed excessive to some, but not to us. We’d lived in "the dark house" for several years before we fully recognized how much we crave and need natural light. It was several more years still before we realized that light itself would become a central theme in our lives.


As soon as we moved in to “the bright house,” everything seemed lighter in all senses of the word. Our four children (all under age six) were growing and thriving. We felt a new sense of buoyancy, a lightheartedness, and an unrestricted energy in our household. But as it turns out, the same windows that let light into a home can also let the darkness inside. Shortly after we moved, just as our lives were in full swing, I was diagnosed with a life-threatening brain tumor. Our world seemed to stop spinning, and dusk set in. It was an overwhelming, scary and sad time, and I secretly wondered whether night was closer than I cared to imagine.


The surgery to remove the tumor took my hearing on one side, but there were no other complications. I not only recovered quickly, but became pregnant with our fifth child just over a year later. We were thrilled and easily slipped back into a happy existence. Yet we were soon once again reminded that while windows provide openings to the outside world, they also let the outside world
in.

When Bridget was born with Down syndrome, none of us knew what to think, or how to feel. We had no experience with Down syndrome. We only knew the stereotypes, which brought sadness and concern. We grieved the loss of the happy time it should have been, and the loss of the baby we thought we were going to meet. But when we saw Bridget in the NICU for the first time, Chris and I both felt the heaviness and uncertainty begin to fade. We’d come around the corner from the nurses’ station to see her laying on a tiny hospital bed, covered in strong, unforgiving light from the warming lamps above. The lighting reminded me of a museum display featuring a rare and valuable piece of jewelry. As Bridget lay beneath it, nearly naked and fully illuminated, our hearts and lives were also laid bare. The light forced us to look at her, at ourselves, and our future. We watched her sleep peacefully, deserving and needing to be loved—just as any other baby. In that moment we realized Bridget is whole. We began to see her not as a child with a disability, but as a person, who would grow to express her own interests, talents, hopes and dreams—just as any other person. We began to understand her potential.


When the warming lights were turned off, there was still a glow that surrounded Bridget. She was radiant. It was unexpected, and we were both moved to tears when we realized that
she was the light.
***

The little girl with wispy ponytails who plays by my feet today does not yet know that I am writing about her. I’ve spent many hours these past few years telling our story, trying to show others that Down syndrome is not something to fear.

Down syndrome does not define Bridget. It is a part of her genetic make-up that is distinctly hers, but it is not her—and it doesn’t even begin to explain who she is. Bridget is a little masterpiece, with texture and depth and richness to spare. She gives freely of her effort and love. She is spirited and vibrant, content without being complacent. Others may feel that she has much to overcome, but Bridget doesn't seem to see it that way. In her we see honesty, lack of pretense, and uninhibited determination as she goes about her life with vigor and jubilance.


It’s interesting how a small amount of extra genetic material in Bridget translates into so much extra in all of our lives. Every day she encourages us to accept our own unique timelines for growth, and reminds us that what matters most isn’t what we achieve and when, but how true to ourselves we remain through the process of becoming. We’ve learned to accept that life is not always neat and tidy (or easy), and that plans can change mid-flight. We’ve also learned that situations we didn’t ask for or want often provide something we need.


A world turned upside-down reveals much about our perspective—it forces us to evaluate ourselves, the assumptions we make about one another, and our beliefs about ideals like success, beauty and perfection. And while Bridget has taught us significant life lessons, it is the small moments in everyday living with her—the countless little bursts—that fill our lives with meaning and joy. We spend our days together reflecting and accepting, learning, laughing, and loving. As a family, we’ve realized that we are not uncomfortable with disability; that we are not afraid of the darkness; and that everything seems better with more windows—and with Bridget in our lives. She has restored our sense of buoyancy.


Since our current home has natural light in abundance, it’s easy to forget that we once lived in a house with very little light. Likewise, it’s difficult to remember life before Bridget. What began with the bright light above her hospital bed and continued as her inner radiance has now developed into a substantial force of its own. Sometimes Bridget’s light is a high beam that illuminates clearly and at great range; at other times, it’s a gentle glow. But it is constant. With Bridget in our lives, our many-windowed home is luminous and vibrant once again. And even after night falls, sparkles are everywhere, filling every room and glittering with tiny flashes of light.

***

Wednesday, September 23, 2009

Throwing Money Away

Chris and I often joke about how we are practically throwing money away--on lots of things, but primarily--whenever we buy kids shoes. Every single one of our five kids has outgrown his or her shoes this past month (alright, Brian's tennies were so stinky that they had to be tossed out, but that is another story alltogether).

I had to tell Chris recently that our youngest daughter is actually throwing away money.

She is a careful citizen, and is greatly concerned with ridding the house of litter and choking hazards (she is also obsessed with the trash compactor, which might have a little to do with her loving the act of throwing things away). She gets very serious when she finds a tissue, a wrapper, the tiniest crumb, or a piece of cereal laying on the ground. She picks up the errant item and immediately goes to toss it.

I had forgotten to mention this until today, when I read about Malea pitching her mom's cell phone and remembered the crumpled dollar bill that I found in our trash a few weeks back.

I have caught her in the act of throwing away money, so I know Miss Bridget is the culprit. To her, apparently cash equals trash. We don't leave money all over the house, but if Bridget discovers any sitting out, we can kiss it goodbye. She'll grab a bill off the counter, crumple it into a tiny ball and head for the nearest trash can.

I'll have to have a little talk with her about the economy and the value of the dollar someday. For now, I'll keep an eagle eye trained on her at all times, and continue to chuckle about finding cash in the trash.

Throwing Money Away

Chris and I often joke about how we are practically throwing money away--on lots of things, but primarily--whenever we buy kids shoes. Every single one of our five kids has outgrown his or her shoes this past month (alright, Brian's tennies were so stinky that they had to be tossed out, but that is another story alltogether).

I had to tell Chris recently that our youngest daughter is actually throwing away money.

She is a careful citizen, and is greatly concerned with ridding the house of litter and choking hazards (she is also obsessed with the trash compactor, which might have a little to do with her loving the act of throwing things away). She gets very serious when she finds a tissue, a wrapper, the tiniest crumb, or a piece of cereal laying on the ground. She picks up the errant item and immediately goes to toss it.

I had forgotten to mention this until today, when I read about Malea pitching her mom's cell phone and remembered the crumpled dollar bill that I found in our trash a few weeks back.

I have caught her in the act of throwing away money, so I know Miss Bridget is the culprit. To her, apparently cash equals trash. We don't leave money all over the house, but if Bridget discovers any sitting out, we can kiss it goodbye. She'll grab a bill off the counter, crumple it into a tiny ball and head for the nearest trash can.

I'll have to have a little talk with her about the economy and the value of the dollar someday. For now, I'll keep an eagle eye trained on her at all times, and continue to chuckle about finding cash in the trash.

Thursday, September 17, 2009

Well. Well. Well.

Believe it or not, Miss Bridget has three new teeth (both of the lateral incisors on top--and one lateral incisor on the bottom)!

When we took her for her first visit to the dentist in June of this year, he'd said he thought a few of her baby teeth may be missing.

This explains why she has been a little cranky recently. Who would have guessed she'd be cutting teeth at three?

This child is full of surprises :)...

Well. Well. Well.

Believe it or not, Miss Bridget has three new teeth (both of the lateral incisors on top--and one lateral incisor on the bottom)!

When we took her for her first visit to the dentist in June of this year, he'd said he thought a few of her baby teeth may be missing.

This explains why she has been a little cranky recently. Who would have guessed she'd be cutting teeth at three?

This child is full of surprises :)...

Tuesday, September 15, 2009

Sunday, September 13, 2009

Buddy Walk 2009

It was a gorgeous day for our local Buddy Walk! We did not have a team of our own (the Walk was early this year, and I knew the first part of September was going to be crazy busy for us), but we did get to enjoy a wonderful day filled with sunshine and friends. It was hot, and a little loud, and near naptime, so Miss Bridget was fairly quiet. She seemed to enjoy herself, though! She also greeted everyone she met with "knuckles" (she likes to say Boom!)

The highlight of our day was getting to meet a few other girls close to Bridget's age, including Leah Elliott and her family. Bridget and Leah were both tired, but were so cute together! My camera was out of batteries (!), so I did not capture any shots of the two of them together. Photographer Melissa Jones was there though, with the Elliott family, and may have one or two (I hope!).

Here are a few other pictures from today:





I don't know if I've mentioned it here, but Bridget's picture will be included in the NDSS Times Square Video this year which will run at the start of the NYC Buddy Walk on September 26th (it's this photo, taken with her Papa on the 4th of July):

Buddy Walk 2009

It was a gorgeous day for our local Buddy Walk! We did not have a team of our own (the Walk was early this year, and I knew the first part of September was going to be crazy busy for us), but we did get to enjoy a wonderful day filled with sunshine and friends. It was hot, and a little loud, and near naptime, so Miss Bridget was fairly quiet. She seemed to enjoy herself, though! She also greeted everyone she met with "knuckles" (she likes to say Boom!)

The highlight of our day was getting to meet a few other girls close to Bridget's age, including Leah Elliott and her family. Bridget and Leah were both tired, but were so cute together! My camera was out of batteries (!), so I did not capture any shots of the two of them together. Photographer Melissa Jones was there though, with the Elliott family, and may have one or two (I hope!).

Here are a few other pictures from today:





I don't know if I've mentioned it here, but Bridget's picture will be included in the NDSS Times Square Video this year which will run at the start of the NYC Buddy Walk on September 26th (it's this photo, taken with her Papa on the 4th of July):

Saturday, September 12, 2009

Love This...

I've been writing recently about the difficult balance between accepting and loving "what is" and trying to make things better for our kids.

Last night, I read an amazing and beautiful story from a father about life with his young son, who has cerebral palsy. It is lovingly written, descriptive and engaging. It says all I'd like to say and more. Go. Read. This. On Bloom.

Love This...

I've been writing recently about the difficult balance between accepting and loving "what is" and trying to make things better for our kids.

Last night, I read an amazing and beautiful story from a father about life with his young son, who has cerebral palsy. It is lovingly written, descriptive and engaging. It says all I'd like to say and more. Go. Read. This. On Bloom.

Friday, September 11, 2009

Disability is Natural, Part III

I have no delusions that everyone is interested in reading book-length posts about our experiences in raising our family, or about my own personal philosophies, but the following may be helpful for those of you currently wading through the "therapy" dilemma. This is a fairly long post, so read on if this is a topic that is of interest to you :)...

There is a tremendous amount of pressure today to provide therapy–-and lots of it.

Everywhere you look within the disability community, you see it and feel it: it is all just too much.

As parents of children with disabilities and delays, we want desperately to help our children reach their potential. We love them. We believe in them. And there is so much "help" out there--so many services, therapies and interventions; new supplements and protocols; endless amounts of information on the web; other parents and doctors who see tremendous potential and are seeking answers and treatments--to make our hopeful visions of the future become reality.

At the same time, we begin to realize that (1) constantly seeking answers, treatments and interventions might suggest that we don't accept our children "as is", and (2) that we'll always feel like, despite huge effort, whatever we've done is not enough.

I don't really buy in to the philosophy that getting "help" means that we feel our children are somehow flawed, although I definitely see the danger in accepting services or interventions without having a firm idea of what that actually means. I see the pit parents can fall into by internalizing the language and processes of the service and medical systems, or in feeling the need to be therapists as much as parents.

As much as we see the abilities and potential in our children--and as much as we'd like to not point out their challenges--it is hard to deny that a child with delays or disabilities has areas of need. What many of us struggle with is how to address this without further pushing our children down the path of being "different"--without unknowingly encouraging their isolation from peers and community by placing them in "special" situations.

I never want Bridget to feel that she needs to be more like everyone else, that something is inherently "wrong" with her, or that her life is filled with "work". I want her to be connected and fulfilled.

And I completely intend to "help" her to do that, just as we have done and continue to do with all of our other children. All the kids deserve to have our support, our genuine interest and effort in providing every opportunity to live a full and happy life. They are all more than worth it.

(Kyle and Brian both have had speech therapy--not because we felt their speech delays were flaws, but because others were having a hard time understanding them which was adding undue frustration in their lives. Sara has had orthodontic intervention--okay, it was just a retainer--to correct her bite for function as well as aesthetics. You get the point. Without giving away information that my teenagers and pre-teens would have my neck for divulging here, there have been many other things we've utilized--from supplements to procedures to therapies to help our other children live full and happy lives.)

Most of the life-building, though, goes on at home. It is here that we are doing the most important work: we are helping to nurture the development of people. All the stuff that goes on outside the home, and outside the boundaries of our family (at school, at the doctor's office, in therapy), is only supplemental in nature and mostly by choice. The development of our children is primarily our responsibility, after all. Even without specific education or training, a parent's perspective and instincts trump all others.

We treat Bridget--and our decisions regarding her care--based on these beliefs. We are determined to be educated and to understand the things that are unique about her having Down syndrome. We also understand that she is a person in her own right, and that Ds is only one aspect of Bridget. We realize that certain accommodations or assistance will benefit her and make it easier for her to learn and grow as an individual. We have always included her fully in our family life, and have worked teaching and wellness into our normal, daily routine. Bridget has more than her fair share of doctor's appointments (mostly for well-checks, routine testing or follow-ups), but we all understand that it is to keep her healthy and able to learn and enjoy life. We would (and do) do the same for each of the people in our family.

This all brings me back to Kathie Snow's bio (which is available on the Disability is Natural website), where a few sentences really stood out (Snow is talking here about leadership training she participated in for adults with developmental disabilities and for parents of children with developmental disabilities):

[The training] was life-changing, and it validated my hopes and beliefs that my son and others with disabilities, and their families, could enjoy rich, full, ordinary lives. Our family didn't want a “special” life; we wanted an ordinary life.
This describes so clearly the simple wish we have for Bridget, and for our lives with her. Is it possible?

Again, from Snow's bio page (talking about her approach with her son):

We found more natural ways of helping Benjamin do what he wanted to do (instead of trying to force him to do what professionals thought was important). It's not that therapists and other service providers aren't helpful and valuable; they are. We just need their help in different ways. We need them, as consultants, to teach us—parents, teachers, day care providers, and others—how to incorporate beneficial activities throughout a person’s day, in natural environments, and to do so in ways that do not send the “not-okay” message. And that’s what we did.
And it is what we have been doing--"by feel". It is what feels right, what intuitively we know is best for Bridget. Each individual, and each family, is unique and what's right for one person may not be what's best for another. But this is where we are today.

We have agreed to partner with specialists, educators, and doctors to help Bridget when it benefits one of three areas: that is, the activity, appointment, intervention, therapy, procedure or supplement has to help Bridget to be more happy, more healthy or more independent. If it doesn't fit into one of those categories, it is not important to her, therefore is not worthwhile to do.

We follow her lead, and enjoy every minute with her. I write and manage this blog to show others how much Bridget is loved, how full of potential she is, and how much she has to offer the world.

Her human worth is not tied to her achievements, though she is capable of so much.

She is interesting and funny and talented, all in her own right. She deserves to make her own way in this world, even if it requires a little extra "help".

I'm excited to see where she's headed. I love that I get to take this journey with her...

Disability is Natural, Part III

I have no delusions that everyone is interested in reading book-length posts about our experiences in raising our family, or about my own personal philosophies, but the following may be helpful for those of you currently wading through the "therapy" dilemma. This is a fairly long post, so read on if this is a topic that is of interest to you :)...

There is a tremendous amount of pressure today to provide therapy–-and lots of it.

Everywhere you look within the disability community, you see it and feel it: it is all just too much.

As parents of children with disabilities and delays, we want desperately to help our children reach their potential. We love them. We believe in them. And there is so much "help" out there--so many services, therapies and interventions; new supplements and protocols; endless amounts of information on the web; other parents and doctors who see tremendous potential and are seeking answers and treatments--to make our hopeful visions of the future become reality.

At the same time, we begin to realize that (1) constantly seeking answers, treatments and interventions might suggest that we don't accept our children "as is", and (2) that we'll always feel like, despite huge effort, whatever we've done is not enough.

I don't really buy in to the philosophy that getting "help" means that we feel our children are somehow flawed, although I definitely see the danger in accepting services or interventions without having a firm idea of what that actually means. I see the pit parents can fall into by internalizing the language and processes of the service and medical systems, or in feeling the need to be therapists as much as parents.

As much as we see the abilities and potential in our children--and as much as we'd like to not point out their challenges--it is hard to deny that a child with delays or disabilities has areas of need. What many of us struggle with is how to address this without further pushing our children down the path of being "different"--without unknowingly encouraging their isolation from peers and community by placing them in "special" situations.

I never want Bridget to feel that she needs to be more like everyone else, that something is inherently "wrong" with her, or that her life is filled with "work". I want her to be connected and fulfilled.

And I completely intend to "help" her to do that, just as we have done and continue to do with all of our other children. All the kids deserve to have our support, our genuine interest and effort in providing every opportunity to live a full and happy life. They are all more than worth it.

(Kyle and Brian both have had speech therapy--not because we felt their speech delays were flaws, but because others were having a hard time understanding them which was adding undue frustration in their lives. Sara has had orthodontic intervention--okay, it was just a retainer--to correct her bite for function as well as aesthetics. You get the point. Without giving away information that my teenagers and pre-teens would have my neck for divulging here, there have been many other things we've utilized--from supplements to procedures to therapies to help our other children live full and happy lives.)

Most of the life-building, though, goes on at home. It is here that we are doing the most important work: we are helping to nurture the development of people. All the stuff that goes on outside the home, and outside the boundaries of our family (at school, at the doctor's office, in therapy), is only supplemental in nature and mostly by choice. The development of our children is primarily our responsibility, after all. Even without specific education or training, a parent's perspective and instincts trump all others.

We treat Bridget--and our decisions regarding her care--based on these beliefs. We are determined to be educated and to understand the things that are unique about her having Down syndrome. We also understand that she is a person in her own right, and that Ds is only one aspect of Bridget. We realize that certain accommodations or assistance will benefit her and make it easier for her to learn and grow as an individual. We have always included her fully in our family life, and have worked teaching and wellness into our normal, daily routine. Bridget has more than her fair share of doctor's appointments (mostly for well-checks, routine testing or follow-ups), but we all understand that it is to keep her healthy and able to learn and enjoy life. We would (and do) do the same for each of the people in our family.

This all brings me back to Kathie Snow's bio (which is available on the Disability is Natural website), where a few sentences really stood out (Snow is talking here about leadership training she participated in for adults with developmental disabilities and for parents of children with developmental disabilities):

[The training] was life-changing, and it validated my hopes and beliefs that my son and others with disabilities, and their families, could enjoy rich, full, ordinary lives. Our family didn't want a “special” life; we wanted an ordinary life.
This describes so clearly the simple wish we have for Bridget, and for our lives with her. Is it possible?

Again, from Snow's bio page (talking about her approach with her son):

We found more natural ways of helping Benjamin do what he wanted to do (instead of trying to force him to do what professionals thought was important). It's not that therapists and other service providers aren't helpful and valuable; they are. We just need their help in different ways. We need them, as consultants, to teach us—parents, teachers, day care providers, and others—how to incorporate beneficial activities throughout a person’s day, in natural environments, and to do so in ways that do not send the “not-okay” message. And that’s what we did.
And it is what we have been doing--"by feel". It is what feels right, what intuitively we know is best for Bridget. Each individual, and each family, is unique and what's right for one person may not be what's best for another. But this is where we are today.

We have agreed to partner with specialists, educators, and doctors to help Bridget when it benefits one of three areas: that is, the activity, appointment, intervention, therapy, procedure or supplement has to help Bridget to be more happy, more healthy or more independent. If it doesn't fit into one of those categories, it is not important to her, therefore is not worthwhile to do.

We follow her lead, and enjoy every minute with her. I write and manage this blog to show others how much Bridget is loved, how full of potential she is, and how much she has to offer the world.

Her human worth is not tied to her achievements, though she is capable of so much.

She is interesting and funny and talented, all in her own right. She deserves to make her own way in this world, even if it requires a little extra "help".

I'm excited to see where she's headed. I love that I get to take this journey with her...

Thursday, September 10, 2009

Preschool: The Scoop

I've had several people ask questions about school/transportation specifics, so here are all the details of our preschool program:

Bridget turned three in July, and we were required to transition from Early Intervention services to our local city school district on her birthday. She recently began attending preschool in one of our local elementary school buildings (it happens to be our 'home" school, where all the kids have gone--and where Brian and Emmy are still). She is in school Monday- Thursday from 8:40-11:15 AM, and gets all of her "therapy" (80 minutes a week of OT, PT and speech) within the school day.

The program has a typical preschool curriculum and classroom set-up. Our other children went to a private community preschool (this program was not around when they were preschool age), but the class, routines, and classroom environment all seem very similar. The classroom is filled with toys (dolls, kitchen, dress-up, trucks, blocks), books, building materials, arts and crafts supplies...all the stuff you'd expect to find in a preschool classroom. There are also a few additional things, like special supportive chairs, picture labels on most objects, and special tools--like a wider variety of writing instruments--that are available in the room.

She's in a class with 6 other children at this point. Two other kids are on IEPs right now. The class has room for 12 students, 6 with IEPs and 6 without (typically developing peers). I think this is pretty common, as I've read several other blogs (from a variety of states) which have described a very similar set-up. (For anyone interested in the process of transition from EI to the school system, go here for a previous post that might be of interest.)

Bridget has one main teacher and two paraprofessionals in the classroom. Her OT, PT and SLP all work with each of the kids in the class who need those services. Almost all of her "therapy" takes place in the classroom within the course of a typical school day. Her classroom teacher and aides are all aware of Bridget's IEP and place a little extra focus on her specific goals in any work they do with her (in play, or during art time, recess, etc.). The way they've described it, it sounds very much like what we have already been doing at home: going about normal life, while recognizing appropriate times to reinforce a particular skill or approach.

About the bus: Bridget rides a bus specially outfitted for young children and kids with particular needs (wheelchairs, etc.). You can see in previous photos that Bridget is strapped into a five-point harness (part of the bus equipment, not ours). She seems to be very comfortable and safe in it! She has a bus driver and an aide who rides along with the kids. The bus is specifically for preschoolers. Only the kids on IEPs are able to ride the bus, so there is just one other little girl who rides the bus with Bridget. The ride to the school, even with one other stop, is about 6 minutes.

I was able to meet the driver and see the bus (in addition to being able to follow the bus on its route) as soon as the school year started. If I would've had any sense that it was not an ideal situation, I would have taken her myself! I was really worried about the bus. It turns out that (1) I had no reason to worry and (2) it is much more convenient and (3) she is really starting to enjoy it!

This is the end of our second week in school, and Bridget is doing great! She is getting on the bus happily and comes home happy. She's not even particularly tired when she gets home, which is a little bit surprising to me. But, I should know by now to expect surprises daily with my little-big girl.

The sun is shining, school is back in session, and my beautiful, sweet Bridget is thriving. Life is good...

Preschool: The Scoop

I've had several people ask questions about school/transportation specifics, so here are all the details of our preschool program:

Bridget turned three in July, and we were required to transition from Early Intervention services to our local city school district on her birthday. She recently began attending preschool in one of our local elementary school buildings (it happens to be our 'home" school, where all the kids have gone--and where Brian and Emmy are still). She is in school Monday- Thursday from 8:40-11:15 AM, and gets all of her "therapy" (80 minutes a week of OT, PT and speech) within the school day.

The program has a typical preschool curriculum and classroom set-up. Our other children went to a private community preschool (this program was not around when they were preschool age), but the class, routines, and classroom environment all seem very similar. The classroom is filled with toys (dolls, kitchen, dress-up, trucks, blocks), books, building materials, arts and crafts supplies...all the stuff you'd expect to find in a preschool classroom. There are also a few additional things, like special supportive chairs, picture labels on most objects, and special tools--like a wider variety of writing instruments--that are available in the room.

She's in a class with 6 other children at this point. Two other kids are on IEPs right now. The class has room for 12 students, 6 with IEPs and 6 without (typically developing peers). I think this is pretty common, as I've read several other blogs (from a variety of states) which have described a very similar set-up. (For anyone interested in the process of transition from EI to the school system, go here for a previous post that might be of interest.)

Bridget has one main teacher and two paraprofessionals in the classroom. Her OT, PT and SLP all work with each of the kids in the class who need those services. Almost all of her "therapy" takes place in the classroom within the course of a typical school day. Her classroom teacher and aides are all aware of Bridget's IEP and place a little extra focus on her specific goals in any work they do with her (in play, or during art time, recess, etc.). The way they've described it, it sounds very much like what we have already been doing at home: going about normal life, while recognizing appropriate times to reinforce a particular skill or approach.

About the bus: Bridget rides a bus specially outfitted for young children and kids with particular needs (wheelchairs, etc.). You can see in previous photos that Bridget is strapped into a five-point harness (part of the bus equipment, not ours). She seems to be very comfortable and safe in it! She has a bus driver and an aide who rides along with the kids. The bus is specifically for preschoolers. Only the kids on IEPs are able to ride the bus, so there is just one other little girl who rides the bus with Bridget. The ride to the school, even with one other stop, is about 6 minutes.

I was able to meet the driver and see the bus (in addition to being able to follow the bus on its route) as soon as the school year started. If I would've had any sense that it was not an ideal situation, I would have taken her myself! I was really worried about the bus. It turns out that (1) I had no reason to worry and (2) it is much more convenient and (3) she is really starting to enjoy it!

This is the end of our second week in school, and Bridget is doing great! She is getting on the bus happily and comes home happy. She's not even particularly tired when she gets home, which is a little bit surprising to me. But, I should know by now to expect surprises daily with my little-big girl.

The sun is shining, school is back in session, and my beautiful, sweet Bridget is thriving. Life is good...

Tuesday, September 08, 2009

Surprise, Surprise

So this morning Chris and I went to pick Bridget up from school for an appointment. As we rounded the corner heading toward her classroom, I saw her standing beside her teacher wearing her backpack on her shoulders.

I said (probably very loudly) Would you look at that! She is wearing her backpack!!

Yeah, she wears it everyday on the way in and on the way back out to the bus, the teacher said with total nonchalance.

Oh really? That little girl is SO busted.

Surprise, Surprise

So this morning Chris and I went to pick Bridget up from school for an appointment. As we rounded the corner heading toward her classroom, I saw her standing beside her teacher wearing her backpack on her shoulders.

I said (probably very loudly) Would you look at that! She is wearing her backpack!!

Yeah, she wears it everyday on the way in and on the way back out to the bus, the teacher said with total nonchalance.

Oh really? That little girl is SO busted.

Monday, September 07, 2009

Disability is Natural, Part II

It is hard not to notice that Bridget's development is delayed in comparison to other kids her age. What that actually means depends on who you are asking. I honestly don't care much where she falls on a standard development scale.

In general, it seems to me that Bridget is thriving--she's happy and healthy and fully able to do many, many things. There are times, though, that it seems like she would benefit from some extra help to reach a goal (of hers) or something she is already clearly working toward herself.

And that help is out there. And it is being offered to us. Do we reject help because it is tied to the "service system" and because accepting the help means we would have to "buy in" to the service system mentality?

I don't think so. We do, though, need to have a clear vision of what place "services"/"therapy"/"help" have in our lives, and what they mean for our children. We need to realize that we (parents) are a huge piece of the puzzle, and that we set "the tone" for our child's early life.

As many of us have already learned, a spotlight on development can be a constant reminder of deficits--and of differences. Too much therapy and focus on what a person cannot do happens at the expense of celebrating what the person can do, and what he or she has achieved. It also often happens at the expense of offering a person the typical experiences that we all need and deserve to have.

People with disabilities are often offered different opportunities in school and in life because they are seen as different (or worse yet, incapable--or worse still, "less than") which, in turn, keeps them isolated rather than encouraging them to be a part of things. If we're not careful, we can unknowingly accept this--and even encourage it--by our enthusiastic participation in early intervention programs and/or extra therapy sessions. If we're not careful, we can--without even realizing it--effectively begin to treat our kids as different and in need of help to make them more like their peers.

Chris and I have thought a lot about "therapy" and services over the past three years, and how best to make use of help that has been offered without somehow underestimating Bridget or pushing her unwittingly into a "special" life--a life of being different. We don't see her as "broken" and in need of fixing, but if we're being realistic, it seems clear that she will benefit from targeted teaching and extra help (all kids do in one area or another).

We want Bridget to have every chance to live a full, healthy and happy life, to develop meaningful relationships, and to have lots of experiences and opportunities. We know we have to find the delicate balance between giving her the support she needs and not placing emphasis on her challenges.

We had a great early intervention experience (a true partnership with her EI team), and I'll write more about that here later (I'll print the text to an article I wrote recently about the subject). There are many valuable aspects in having a team of developmental specialists to help support a child's learning and overall health.

But it is interesting that we see the most development in Bridget not when we've had a lot of "therapy" sessions, but rather when we're on vacation (over the Holidays, Spring Break, Summer break) or when we're with extended family for several days in a row. It is when she is exposed to lots of different people, of different ages and interests, personalities, etc.--or when she is provided numerous, rich opportunities to explore, interact and experience life--that she really seems to thrive and grow.

To be continued...

**Lisa at Finnian's Journey has several great posts up about parenting a child with a developmental delay, and about the book Disability is Natural by Kathie Snow. If you have a chance, visit this page for more background on Kathie Snow and her philosophies.

Disability is Natural, Part II

It is hard not to notice that Bridget's development is delayed in comparison to other kids her age. What that actually means depends on who you are asking. I honestly don't care much where she falls on a standard development scale.

In general, it seems to me that Bridget is thriving--she's happy and healthy and fully able to do many, many things. There are times, though, that it seems like she would benefit from some extra help to reach a goal (of hers) or something she is already clearly working toward herself.

And that help is out there. And it is being offered to us. Do we reject help because it is tied to the "service system" and because accepting the help means we would have to "buy in" to the service system mentality?

I don't think so. We do, though, need to have a clear vision of what place "services"/"therapy"/"help" have in our lives, and what they mean for our children. We need to realize that we (parents) are a huge piece of the puzzle, and that we set "the tone" for our child's early life.

As many of us have already learned, a spotlight on development can be a constant reminder of deficits--and of differences. Too much therapy and focus on what a person cannot do happens at the expense of celebrating what the person can do, and what he or she has achieved. It also often happens at the expense of offering a person the typical experiences that we all need and deserve to have.

People with disabilities are often offered different opportunities in school and in life because they are seen as different (or worse yet, incapable--or worse still, "less than") which, in turn, keeps them isolated rather than encouraging them to be a part of things. If we're not careful, we can unknowingly accept this--and even encourage it--by our enthusiastic participation in early intervention programs and/or extra therapy sessions. If we're not careful, we can--without even realizing it--effectively begin to treat our kids as different and in need of help to make them more like their peers.

Chris and I have thought a lot about "therapy" and services over the past three years, and how best to make use of help that has been offered without somehow underestimating Bridget or pushing her unwittingly into a "special" life--a life of being different. We don't see her as "broken" and in need of fixing, but if we're being realistic, it seems clear that she will benefit from targeted teaching and extra help (all kids do in one area or another).

We want Bridget to have every chance to live a full, healthy and happy life, to develop meaningful relationships, and to have lots of experiences and opportunities. We know we have to find the delicate balance between giving her the support she needs and not placing emphasis on her challenges.

We had a great early intervention experience (a true partnership with her EI team), and I'll write more about that here later (I'll print the text to an article I wrote recently about the subject). There are many valuable aspects in having a team of developmental specialists to help support a child's learning and overall health.

But it is interesting that we see the most development in Bridget not when we've had a lot of "therapy" sessions, but rather when we're on vacation (over the Holidays, Spring Break, Summer break) or when we're with extended family for several days in a row. It is when she is exposed to lots of different people, of different ages and interests, personalities, etc.--or when she is provided numerous, rich opportunities to explore, interact and experience life--that she really seems to thrive and grow.

To be continued...

**Lisa at Finnian's Journey has several great posts up about parenting a child with a developmental delay, and about the book Disability is Natural by Kathie Snow. If you have a chance, visit this page for more background on Kathie Snow and her philosophies.

Friday, September 04, 2009

For Parents With Preschool in Their Future...

I was cleaning out Bridget's backpack (the one she hates) last night and found this at the bottom:

In case you can't tell from the picture, it is a bracelet made with a neon green pipe cleaner and penne pasta.

I don't know why it caught me by surprise, but I had forgotten how all the kids brought cute little crafts home from preschool. I thought I might find some papers and communication from the school or the teacher, but I just wasn't anticipating finding jewelery made out of uncooked pasta in Bridget's butterfly bag.

I can't tell you how delighted I was, or how great--how refreshingly normal--it was to reach into her bag and pull out this little treasure. The best part: she was standing in front of me, smiling and reaching her arm out for me to put it on her wrist. She was proud, and keyed in, and knew just what to do with her creation :).

For Parents With Preschool in Their Future...

I was cleaning out Bridget's backpack (the one she hates) last night and found this at the bottom:

In case you can't tell from the picture, it is a bracelet made with a neon green pipe cleaner and penne pasta.

I don't know why it caught me by surprise, but I had forgotten how all the kids brought cute little crafts home from preschool. I thought I might find some papers and communication from the school or the teacher, but I just wasn't anticipating finding jewelery made out of uncooked pasta in Bridget's butterfly bag.

I can't tell you how delighted I was, or how great--how refreshingly normal--it was to reach into her bag and pull out this little treasure. The best part: she was standing in front of me, smiling and reaching her arm out for me to put it on her wrist. She was proud, and keyed in, and knew just what to do with her creation :).

Thursday, September 03, 2009

Preschool Update


Don't let this picture fool you:
Or this one:This post could have alternatively been titled I Hate My Backpack. The above photos are the only times Bridget has touched or sat next to her backpack happily. This is more the look we see when we ask her to hold it:

The first time we put the (junior-sized) book bag on her shoulders, she stumbled backwards and fell onto her bottom. And that, my friends, was the end of strapping the sweet little butterfly backpack onto her shoulders. She now sees the backpack as a major hassle, her nemesis on school mornings.

She does, however, love to get dressed in the morning, and is proud of her school clothes and her boots. She's showing everyone her hair, her outfit, or her shoes by pointing to the impressive item, standing with her hands on her hips and giving an I'm stylin' look. It must be genetic. This is exactly what Sara and Emmy did when they were in preschool. (It's a good thing she didn't notice that someone painted on her back yesterday during easel time! It is also a good thing that most of her school-play clothes are clearance items or second-hand. The little jean jacket she's been wearing was Emmy's. And this grey outfit with the flutter sleeves and pink boots is all Target. Cute & cheap = perfect.)

Miss Bridget is super busy, and is moving fast these days. Evidence (I almost missed this shot as she blew past me...with a look of serious intent!) :



So here is the update part of the post:

Today was Bridget's third day in preschool and the end of this week for her. She had a hard time getting on the bus (leaving me) the first two days. She was sobbing when she arrived at school on Tuesday, and when she left here yesterday. I sent a message to her teacher letting her know that I had my keys in hand and was available to come to the school if she didn't settle in once she got there. Here is the response:

Bridget is here and off to a great start!! :) She wasn't crying anymore when the bus arrived and walked ALL THE WAY in by herself!!! She is such a big girl - you should be so proud of her!!

And today's message from her teacher:
Another wonderful day for Miss Bridget! She arrived happy, stayed happy and left happy - even walked up the steps of the bus holding onto my fingers while I stood behind her!!! I really couldn't be more pleased with how well Bridget has adjusted.
Emmy and Brian arrive at the school about 20 minutes after Bridget, so they visit her classroom to check on her each morning. They were beaming yesterday when they got home from school and told me how Bridget was playing and happy when they stopped in. We had a great week and are so proud of our little peanut.

She amazes us each and every day!

Preschool Update


Don't let this picture fool you:
Or this one:This post could have alternatively been titled I Hate My Backpack. The above photos are the only times Bridget has touched or sat next to her backpack happily. This is more the look we see when we ask her to hold it:

The first time we put the (junior-sized) book bag on her shoulders, she stumbled backwards and fell onto her bottom. And that, my friends, was the end of strapping the sweet little butterfly backpack onto her shoulders. She now sees the backpack as a major hassle, her nemesis on school mornings.

She does, however, love to get dressed in the morning, and is proud of her school clothes and her boots. She's showing everyone her hair, her outfit, or her shoes by pointing to the impressive item, standing with her hands on her hips and giving an I'm stylin' look. It must be genetic. This is exactly what Sara and Emmy did when they were in preschool. (It's a good thing she didn't notice that someone painted on her back yesterday during easel time! It is also a good thing that most of her school-play clothes are clearance items or second-hand. The little jean jacket she's been wearing was Emmy's. And this grey outfit with the flutter sleeves and pink boots is all Target. Cute & cheap = perfect.)

Miss Bridget is super busy, and is moving fast these days. Evidence (I almost missed this shot as she blew past me...with a look of serious intent!) :



So here is the update part of the post:

Today was Bridget's third day in preschool and the end of this week for her. She had a hard time getting on the bus (leaving me) the first two days. She was sobbing when she arrived at school on Tuesday, and when she left here yesterday. I sent a message to her teacher letting her know that I had my keys in hand and was available to come to the school if she didn't settle in once she got there. Here is the response:

Bridget is here and off to a great start!! :) She wasn't crying anymore when the bus arrived and walked ALL THE WAY in by herself!!! She is such a big girl - you should be so proud of her!!

And today's message from her teacher:
Another wonderful day for Miss Bridget! She arrived happy, stayed happy and left happy - even walked up the steps of the bus holding onto my fingers while I stood behind her!!! I really couldn't be more pleased with how well Bridget has adjusted.
Emmy and Brian arrive at the school about 20 minutes after Bridget, so they visit her classroom to check on her each morning. They were beaming yesterday when they got home from school and told me how Bridget was playing and happy when they stopped in. We had a great week and are so proud of our little peanut.

She amazes us each and every day!

Tuesday, September 01, 2009

First Day of Preschool

"Do you remember three years ago when she was so tiny in that little hospital bed? We had to put our hands through the little holes on the side so we could touch her. Well, look at her now," Brian said as we drove behind Bridget's bus on the way to her school this morning.

I was already fighting back tears, and that did it. He kept turning to look at me and said a few times, "Mom, are you okay? I think you're feeling the same thing I'm feeling, but maybe even more."

Emmy asked, "Do you think she's okay on the bus? She has never even been in a car before without either you or Dad." She was tearing up, too.

It is getting late, and I'll spare all of you the many details of Bridget's first day of preschool, but the short version is that she was looked after with great care and she made it home in one piece (albeit barefoot and carrying her shoes for some reason). She did not love the bus ride, but was happier on the way home than on the way to the school. Her teachers, aides, therapists and bus driver are all awesome.

The best part of the day was when she got off the bus, threw her arms around me and didn't let go for a long, long time.

Brian hit the nail on the head with his comments on the way to school this morning. I can picture us sitting in the hospital looking at her in her little isolette--wondering where we might be in a few years. We wondered what she would be like, what our lives would be like down the road a little way.

I looked at her today and thought how great is this? (And no, I'm not jumping up and down yet about having a few hours to myself...It was hard to have her away from me). I am so thrilled, though, that she has the opportunity to attend school this year, and that she is fully able to take advantage of the chance. Bridget is healthy, aware and energetic. I am excited to see her grow this year, learn new things, make friends and become more independent.

I'm sure you'll all be hearing more about preschool as we move forward, so I'll close with a few photos: