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?
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.
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?
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.
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.
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.
In case you can't tell from the picture, it is a bracelet made with a neon green pipe cleaner and penne pasta. In case you can't tell from the picture, it is a bracelet made with a neon green pipe cleaner and penne pasta. 
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:
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.)
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!!
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.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.
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: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.)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!!
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.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.
"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.
"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.
A Beautiful Life
--Our First Two Years with Bridget
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