Thoughts from Dad...

When it comes to my youngest daughter Bridget, what I feel most often is pride.

Sure, I’m proud of her in so many ways as any father would be. I'm proud to see her smile and laugh, interact with her older siblings, communicate with sign language (most fathers don't get that experience), crawl, stand, take first steps, even raise her index finger high in the air when we say "Go Bucks!"...and the list goes on. I'm proud of the way she expresses herself, of her joyful spirit, and of the depth of her determination.

That feeling of pride extends much farther, though, into areas I would not really have expected.

I am proud of my other children for having such a pure acceptance for who Bridget really is as a person, not only as a child with Down syndrome. I’m proud of their willingness to try to contemplate the lives of others with disabilities and to view and appreciate them as individuals.

I am proud of their young friends for being willing to take the lead from our children in finding an understanding, acceptance and pure enjoyment of Bridget.

I am proud of my friends and extended family for celebrating Bridget, versus judging her as a child with a syndrome that makes her different, and for supporting our entire family in our advocacy efforts.

I’m proud of my wife for her willingness to provide information, along with a sense of peace and understanding, to other parents who will have children with Down syndrome and are uncertain as to what that really means and what the future may hold.

Just two years ago we were in that uncertain position, and I’m proud to say that our life is much more complete and full with Bridget in it!

**This post from Chris marks the end of Ds Awareness Month. Although it also marks the end of our participation in 31 for 21, we will continue to advocate, on all days, for Bridget and for all people with Down syndrome.

Thoughts from Dad...

When it comes to my youngest daughter Bridget, what I feel most often is pride.

Sure, I’m proud of her in so many ways as any father would be. I'm proud to see her smile and laugh, interact with her older siblings, communicate with sign language (most fathers don't get that experience), crawl, stand, take first steps, even raise her index finger high in the air when we say "Go Bucks!"...and the list goes on. I'm proud of the way she expresses herself, of her joyful spirit, and of the depth of her determination.

That feeling of pride extends much farther, though, into areas I would not really have expected.

I am proud of my other children for having such a pure acceptance for who Bridget really is as a person, not only as a child with Down syndrome. I’m proud of their willingness to try to contemplate the lives of others with disabilities and to view and appreciate them as individuals.

I am proud of their young friends for being willing to take the lead from our children in finding an understanding, acceptance and pure enjoyment of Bridget.

I am proud of my friends and extended family for celebrating Bridget, versus judging her as a child with a syndrome that makes her different, and for supporting our entire family in our advocacy efforts.

I’m proud of my wife for her willingness to provide information, along with a sense of peace and understanding, to other parents who will have children with Down syndrome and are uncertain as to what that really means and what the future may hold.

Just two years ago we were in that uncertain position, and I’m proud to say that our life is much more complete and full with Bridget in it!

**This post from Chris marks the end of Ds Awareness Month. Although it also marks the end of our participation in 31 for 21, we will continue to advocate, on all days, for Bridget and for all people with Down syndrome.

Happy Halloween!

Here are a few pics of Miss Bridget dressed up last night for Trick or Treat.

She was a really, really cute cat--who really, really did not want to wear her mask :). She knew exactly where it was supposed to go, and would hold it up to her face or head, but did not want it strapped on. I can't say I blame her...it was squishing her little eyes!

Happy Halloween!

Here are a few pics of Miss Bridget dressed up last night for Trick or Treat.

She was a really, really cute cat--who really, really did not want to wear her mask :). She knew exactly where it was supposed to go, and would hold it up to her face or head, but did not want it strapped on. I can't say I blame her...it was squishing her little eyes!

Holy Cow!

So I had this great post planned a few weeks ago: Holy Cow Times Two!

Make that a big Holy Cow...Just One, Though. I'll explain...

I follow the blogs of several of Bridget's peers. I love keeping up with these other kids and families. My kids all know each of the children by name, and often ask about them.

One local family (who lives on the other side of town, and who we have yet to meet) has a precious little girl, Leah, who is close to Bridget's age. I will often take Bridget to the computer and show her pictures of Leah and the other kids whose blogs I browse.

One day, Leah's mom Mary posted Leah Walks, a video of her proudly taking some steps (at the end, you can hear Mary shouting with excitement, "Holy Cow!!").

When Bridget woke up from her nap that day, I took her to the computer and said, "Leah is walking. Want to see?" She was totally engrossed, and smiled throughout the 30-second clip. And at the end, she clapped and raised her hands above her head. It was adorable. I showed her the video about 10 times that day and we clapped together at the end of each one.

Bridget had been free standing and standing against things, but had not ventured out...until that night. I set her against our back door and said, "Can you walk like Leah?" No joke, she came toward me squealing with her shoulders up by her ears. She took 5 or 6 steps to me, giggling the whole time. She was like, Yep, I can take steps by myself, too. She was inspired to walk by Leah walking. I was blown away.

The funny thing is...no one else was home to see Bridget walking but me. Since that night she has taken a few steps here and there without help, but she usually wants to hold at least a finger for moral support. She is fully capable of walking on her own, but she is holding out on us. When asked, "Bridget, please stand up and take a few steps," she initially furrowed her brow, shouted "NO!" and pinched her little index finger and thumb together with vigor. She now replies sweetly and with a smile, "no". She honestly just says "no" while signing "no" at the same time. So, my Holy Cow post has been modified :).

I do love how animated Bridget gets when she sees other babies and kids. I would love to find her a few friends who have the extra chromosome in common.

Bridget is surrounded by kids at home and in our neighborhood, but there are no little girls who live nearby and also have Ds. There are a few boys close to her age in our community, and I am going to reach out to their families and see if we can get together.

We have loved reading about her peers like Leah, Ella Grace, Vince, and Reid through their blogs. Thank you to all of these parents who write about their children and their experiences. They keep us company and inspire us without even knowing it.

Holy Cow!

So I had this great post planned a few weeks ago: Holy Cow Times Two!

Make that a big Holy Cow...Just One, Though. I'll explain...

I follow the blogs of several of Bridget's peers. I love keeping up with these other kids and families. My kids all know each of the children by name, and often ask about them.

One local family (who lives on the other side of town, and who we have yet to meet) has a precious little girl, Leah, who is close to Bridget's age. I will often take Bridget to the computer and show her pictures of Leah and the other kids whose blogs I browse.

One day, Leah's mom Mary posted Leah Walks, a video of her proudly taking some steps (at the end, you can hear Mary shouting with excitement, "Holy Cow!!").

When Bridget woke up from her nap that day, I took her to the computer and said, "Leah is walking. Want to see?" She was totally engrossed, and smiled throughout the 30-second clip. And at the end, she clapped and raised her hands above her head. It was adorable. I showed her the video about 10 times that day and we clapped together at the end of each one.

Bridget had been free standing and standing against things, but had not ventured out...until that night. I set her against our back door and said, "Can you walk like Leah?" No joke, she came toward me squealing with her shoulders up by her ears. She took 5 or 6 steps to me, giggling the whole time. She was like, Yep, I can take steps by myself, too. She was inspired to walk by Leah walking. I was blown away.

The funny thing is...no one else was home to see Bridget walking but me. Since that night she has taken a few steps here and there without help, but she usually wants to hold at least a finger for moral support. She is fully capable of walking on her own, but she is holding out on us. When asked, "Bridget, please stand up and take a few steps," she initially furrowed her brow, shouted "NO!" and pinched her little index finger and thumb together with vigor. She now replies sweetly and with a smile, "no". She honestly just says "no" while signing "no" at the same time. So, my Holy Cow post has been modified :).

I do love how animated Bridget gets when she sees other babies and kids. I would love to find her a few friends who have the extra chromosome in common.

Bridget is surrounded by kids at home and in our neighborhood, but there are no little girls who live nearby and also have Ds. There are a few boys close to her age in our community, and I am going to reach out to their families and see if we can get together.

We have loved reading about her peers like Leah, Ella Grace, Vince, and Reid through their blogs. Thank you to all of these parents who write about their children and their experiences. They keep us company and inspire us without even knowing it.

Ds and Nutritional Supplementation

Bridget was in the hospital for a month after she was born, and I was there with her most of that time. When I was at home, there was so much to do, and the other kids needed me. I did not have a chance to spend endless hours on the computer doing research. Either there were not as many Ds blogs then, or I was unable to find them. I probably would have spent as much time as I could reading personal experiences. I wanted information, and to feel hopeful.

I was looking for basic information about Down syndrome and what we might experience with Bridget. I found the incredibly comprehensive and helpful Riverbend Down Syndrome Support Group website, and printed out sections of interest to read at the hospital.

I was mostly concerned with things that applied to Bridget's first three months of life. I spent quite a bit of time researching the nutritional needs of premature babies and feeding issues in babies with Down syndrome. I really wanted to nurse Bridget and was determined to do everything I could to give us the best chance at successful breastfeeding.

Knowing that each child is unique, and that there were many things I could do little more than worry about at that point, I tried to not look too far into the future.

I came across information on Targeted Nutritional Intervention (TNI) and NuTriVene-D. I was skeptical at first, but came to the conclusion that nutritional supplementation was something I should at least consider. I did not feel the need to "fix" Bridget, or to change her...but I certainly didn't want to miss an opportunity to improve her health or to help her fulfill her own potential. Chris and I knew right away that we wanted to be open and creative in parenting and caring for Bridget, and in giving her a great start in life.

I printed out detailed information about TNI and gave it to our pediatrician to look over. She felt that Bridget may benefit and that it was not likely to do harm. She would have supported us if we'd decided to try it.

After careful consideration, we decided not to use TNI. There were three main reasons: (1) We wanted to get to know Bridget without medications or supplements. I felt strongly that waiting several months to start TNI would not be harmful. (2) Once she was able to leave the hospital, it was clear to us that Bridget was thriving. Her muscle tone was good, and she was alert and active. (3) After reading testimonials, talking to people who had used TNI, and fact-checking as much as possible, we still were not convinced of the benefit. (Additionally, Bridget had some minor GE reflux issues, and the literature explained that increased reflux was a potential side effect of the treatment.)

We are very content with our choice not to use nutritional and dietary supplementation with Bridget. She's been incredibly healthy so far. I'm always interested, though, in hearing about all the ways children with Down syndrome may be helped to meet their full potential.

Our pediatrician recently asked if I had seen the Changing Minds Foundation website. I had not. (One of her other patients with Ds wanted her professional opinion on the Changing Minds protocol.)

I am curious to hear what others have found and experienced. Please post here, or email me if you are using, or have used TNI or the Changing Minds Foundation protocol.

Ds and Nutritional Supplementation

Bridget was in the hospital for a month after she was born, and I was there with her most of that time. When I was at home, there was so much to do, and the other kids needed me. I did not have a chance to spend endless hours on the computer doing research. Either there were not as many Ds blogs then, or I was unable to find them. I probably would have spent as much time as I could reading personal experiences. I wanted information, and to feel hopeful.

I was looking for basic information about Down syndrome and what we might experience with Bridget. I found the incredibly comprehensive and helpful Riverbend Down Syndrome Support Group website, and printed out sections of interest to read at the hospital.

I was mostly concerned with things that applied to Bridget's first three months of life. I spent quite a bit of time researching the nutritional needs of premature babies and feeding issues in babies with Down syndrome. I really wanted to nurse Bridget and was determined to do everything I could to give us the best chance at successful breastfeeding.

Knowing that each child is unique, and that there were many things I could do little more than worry about at that point, I tried to not look too far into the future.

I came across information on Targeted Nutritional Intervention (TNI) and NuTriVene-D. I was skeptical at first, but came to the conclusion that nutritional supplementation was something I should at least consider. I did not feel the need to "fix" Bridget, or to change her...but I certainly didn't want to miss an opportunity to improve her health or to help her fulfill her own potential. Chris and I knew right away that we wanted to be open and creative in parenting and caring for Bridget, and in giving her a great start in life.

I printed out detailed information about TNI and gave it to our pediatrician to look over. She felt that Bridget may benefit and that it was not likely to do harm. She would have supported us if we'd decided to try it.

After careful consideration, we decided not to use TNI. There were three main reasons: (1) We wanted to get to know Bridget without medications or supplements. I felt strongly that waiting several months to start TNI would not be harmful. (2) Once she was able to leave the hospital, it was clear to us that Bridget was thriving. Her muscle tone was good, and she was alert and active. (3) After reading testimonials, talking to people who had used TNI, and fact-checking as much as possible, we still were not convinced of the benefit. (Additionally, Bridget had some minor GE reflux issues, and the literature explained that increased reflux was a potential side effect of the treatment.)

We are very content with our choice not to use nutritional and dietary supplementation with Bridget. She's been incredibly healthy so far. I'm always interested, though, in hearing about all the ways children with Down syndrome may be helped to meet their full potential.

Our pediatrician recently asked if I had seen the Changing Minds Foundation website. I had not. (One of her other patients with Ds wanted her professional opinion on the Changing Minds protocol.)

I am curious to hear what others have found and experienced. Please post here, or email me if you are using, or have used TNI or the Changing Minds Foundation protocol.

Gifts...

There’s a sense of security, acceptance, and peacefulness that has come into my life since Bridget arrived. Sometimes I feel like Mona Lisa, with a slight smirk hiding secrets so empowering and so wonderful, that people would spend fortunes and lifetimes trying to discover them.

I'm not saying that it is always easy, because sometimes being a parent is just plain exhausting. But I am thankful every day for this sense of comfort in my own skin, & for Bridget--for her sweet little self & for all of the gifts she's brought into our lives...

Gifts...

There’s a sense of security, acceptance, and peacefulness that has come into my life since Bridget arrived. Sometimes I feel like Mona Lisa, with a slight smirk hiding secrets so empowering and so wonderful, that people would spend fortunes and lifetimes trying to discover them.

I'm not saying that it is always easy, because sometimes being a parent is just plain exhausting. But I am thankful every day for this sense of comfort in my own skin, & for Bridget--for her sweet little self & for all of the gifts she's brought into our lives...

Evaluations & Assessments

The way the system works, service providers need to evaluate Bridget and record their observations in order to justify the specialized help. I have given much thought to the process of evaluation and assessment--of defining the need for assistance and, by default, pointing out all the ways a person is "broken" and needs "fixed".

I realized recently that this process will be a fixture in our lives for some time to come. I have considered (heavily) my role in supporting Bridget, and how much to push--how far to go to see results.

Our own feelings regarding interventions and therapies began to come into focus early. After being in the hospital for Bridget's first month of life, we were enjoying our days with her at home. We spent the first several months just caring for Bridget and getting to know her. That time allowed us to develop not only routines, but also strong bonds with Bridget. It provided stability for our whole family. We first met with Help Me Grow when she was two months old, but chose not to start services for several more months. I truly feel that we made the right decision.

We have a great Early Intervention (EI) team. We work together to track Bridget's progress and to determine how best to encourage and support her learning. We see Bridget’s EI team (team leader, OT, PT) once a month, and have her therapists out on an as-need basis. For us, home-based and family-centered services are best whenever possible. There are many families that include outside therapy as much as once a day, but what works best for one individual or family may not work for another.

I write monthly updates on Bridget's progress in all areas, and on what we have been doing at home each month. I also provide information on any medical appointments or tests, or any changes in status that her team should know about. They, in turn, provide me with feedback after each visit as well as support materials to accomplish goals we have set together.
I am open with all of our intervention specialists and am very active in helping Bridget move to the next stages of development, but I've asked not to be given every detail of her assessments. General areas of strength and areas needing focus are plenty of information.

Bridget was just over five months old when we had her first evaluation with her EI team. She was a "superstar", hitting all the marks for a baby in her age range (adjusted for prematurity--she was six weeks early). In the "social/emotional" category, she actually ranked above other babies her "real" age--including "typical" babies. She was alert, and aware, and strong. She was rolling over both ways, vocalizing a lot, bringing objects to her mouth, bringing her hands together, trying to imitate singing, clearly communicating her needs and wants, and lifting her head and shoulders off the floor when on her tummy. She was nursing well and getting ready to begin solid foods.

I already knew she was thriving, but the evaluation was exciting and affirmed all my own thoughts. The team clearly enjoyed Bridget, and they seemed really happy--although a little bit surprised, I think--to see how well she was doing. There was lots of smiling, and clapping, and "Yeah, Bridget!" I was gently cautioned that the evaluations are "harder" (as they include more specific tasks) as children grow. Generally, for kids with Down syndrome, the "lag" gets more obvious as time goes by.

At her nine month evaluation, Bridget did all sorts of great things. She sat independently; experimented with many different sounds (short bursts & long strings of sounds, loud & quiet sounds, squealing); she stood with help; passed toys freely from one hand to the other; and was generally animated and willing to show all of her skills. She showed only minor delays in that evaluation. She could not, however, hold a cracker and eat it herself, so she did not get a check in that box--it had to be left empty and she "lost points" for not possessing that skill.

This was a critical moment in my understanding of my role in Bridget's growth and development, and in determining how far to take interventions and therapies. How important was it that she was a "superstar"--proving everyone wrong that said she would never (fill in the blank), or would not (fill in the blank) within the "typical" time frame, or would not (fill in the blank) as well as her peers? I could have let the fact that she was unable to feed herself a cracker eat me alive. In the past, I just might have. I might have decided: Okay...we are going to do this...we are going to make sure she can eat a cracker for the next evaluation. She'll show them. We'll show them.

The truth is, I had never really given her crackers to eat herself. I tried once. She could easily hold the cracker and bring it to her mouth, but shoved the whole thing inside. She had no teeth, and little saliva, and was not really "chewing", so it just was not the right time. I lunged forward to swipe the cracker out of her mouth, and she ended up sobbing. It was not the best start to independent eating :).

The evaluation reminded me that many 9-month-old babies are feeding themselves crackers, and Bridget was not. With tons of work (and me letting go of my fear of choking), Bridget might have been able to perform this skill earlier. But when I really thought about it, I realized that it just didn't matter. Was I going to cling to every point on these evaluations? Was I going to make sure we focused on every little thing that was pointed out? Was I going to drive us all crazy with daily therapy sessions and working tirelessly on all the things Bridget could not yet do?

I knew Bridget was learning. I knew Bridget was working toward milestones. I knew she was happy, healthy and secure. Our whole family was involved in her development by playing with her, talking to her, and generally making her an important part of everything we do.

I knew right then that I had to put my (or anyone else's) motives aside and look instead for Bridget to reveal her own. We look to her for readiness "cues".

We've all learned the signs for things in our everyday life that are important to Bridget, and we've learned techniques to help her reach milestones in all areas of her development. With her, our work is play, and our play is really "work". Together, we are making lots of progress, its just that we are making it fun and following her lead...


**The ages of birth to three are truly the foundation for a person's learning. Early Intervention programs are important and necessary. For us, and with Bridget's own personality, less has been more. We make it a priority to be active learners along with Bridget, and to surround her with books as well as educational toys and experiences--and a lot of love.

**Jennifer Graf Groneberg's Perfectly Imperfect also takes a look, although much more eloquently :), at this same issue.

Evaluations & Assessments

The way the system works, service providers need to evaluate Bridget and record their observations in order to justify the specialized help. I have given much thought to the process of evaluation and assessment--of defining the need for assistance and, by default, pointing out all the ways a person is "broken" and needs "fixed".

I realized recently that this process will be a fixture in our lives for some time to come. I have considered (heavily) my role in supporting Bridget, and how much to push--how far to go to see results.

Our own feelings regarding interventions and therapies began to come into focus early. After being in the hospital for Bridget's first month of life, we were enjoying our days with her at home. We spent the first several months just caring for Bridget and getting to know her. That time allowed us to develop not only routines, but also strong bonds with Bridget. It provided stability for our whole family. We first met with Help Me Grow when she was two months old, but chose not to start services for several more months. I truly feel that we made the right decision.

We have a great Early Intervention (EI) team. We work together to track Bridget's progress and to determine how best to encourage and support her learning. We see Bridget’s EI team (team leader, OT, PT) once a month, and have her therapists out on an as-need basis. For us, home-based and family-centered services are best whenever possible. There are many families that include outside therapy as much as once a day, but what works best for one individual or family may not work for another.

I write monthly updates on Bridget's progress in all areas, and on what we have been doing at home each month. I also provide information on any medical appointments or tests, or any changes in status that her team should know about. They, in turn, provide me with feedback after each visit as well as support materials to accomplish goals we have set together.
I am open with all of our intervention specialists and am very active in helping Bridget move to the next stages of development, but I've asked not to be given every detail of her assessments. General areas of strength and areas needing focus are plenty of information.

Bridget was just over five months old when we had her first evaluation with her EI team. She was a "superstar", hitting all the marks for a baby in her age range (adjusted for prematurity--she was six weeks early). In the "social/emotional" category, she actually ranked above other babies her "real" age--including "typical" babies. She was alert, and aware, and strong. She was rolling over both ways, vocalizing a lot, bringing objects to her mouth, bringing her hands together, trying to imitate singing, clearly communicating her needs and wants, and lifting her head and shoulders off the floor when on her tummy. She was nursing well and getting ready to begin solid foods.

I already knew she was thriving, but the evaluation was exciting and affirmed all my own thoughts. The team clearly enjoyed Bridget, and they seemed really happy--although a little bit surprised, I think--to see how well she was doing. There was lots of smiling, and clapping, and "Yeah, Bridget!" I was gently cautioned that the evaluations are "harder" (as they include more specific tasks) as children grow. Generally, for kids with Down syndrome, the "lag" gets more obvious as time goes by.

At her nine month evaluation, Bridget did all sorts of great things. She sat independently; experimented with many different sounds (short bursts & long strings of sounds, loud & quiet sounds, squealing); she stood with help; passed toys freely from one hand to the other; and was generally animated and willing to show all of her skills. She showed only minor delays in that evaluation. She could not, however, hold a cracker and eat it herself, so she did not get a check in that box--it had to be left empty and she "lost points" for not possessing that skill.

This was a critical moment in my understanding of my role in Bridget's growth and development, and in determining how far to take interventions and therapies. How important was it that she was a "superstar"--proving everyone wrong that said she would never (fill in the blank), or would not (fill in the blank) within the "typical" time frame, or would not (fill in the blank) as well as her peers? I could have let the fact that she was unable to feed herself a cracker eat me alive. In the past, I just might have. I might have decided: Okay...we are going to do this...we are going to make sure she can eat a cracker for the next evaluation. She'll show them. We'll show them.

The truth is, I had never really given her crackers to eat herself. I tried once. She could easily hold the cracker and bring it to her mouth, but shoved the whole thing inside. She had no teeth, and little saliva, and was not really "chewing", so it just was not the right time. I lunged forward to swipe the cracker out of her mouth, and she ended up sobbing. It was not the best start to independent eating :).

The evaluation reminded me that many 9-month-old babies are feeding themselves crackers, and Bridget was not. With tons of work (and me letting go of my fear of choking), Bridget might have been able to perform this skill earlier. But when I really thought about it, I realized that it just didn't matter. Was I going to cling to every point on these evaluations? Was I going to make sure we focused on every little thing that was pointed out? Was I going to drive us all crazy with daily therapy sessions and working tirelessly on all the things Bridget could not yet do?

I knew Bridget was learning. I knew Bridget was working toward milestones. I knew she was happy, healthy and secure. Our whole family was involved in her development by playing with her, talking to her, and generally making her an important part of everything we do.

I knew right then that I had to put my (or anyone else's) motives aside and look instead for Bridget to reveal her own. We look to her for readiness "cues".

We've all learned the signs for things in our everyday life that are important to Bridget, and we've learned techniques to help her reach milestones in all areas of her development. With her, our work is play, and our play is really "work". Together, we are making lots of progress, its just that we are making it fun and following her lead...


**The ages of birth to three are truly the foundation for a person's learning. Early Intervention programs are important and necessary. For us, and with Bridget's own personality, less has been more. We make it a priority to be active learners along with Bridget, and to surround her with books as well as educational toys and experiences--and a lot of love.

**Jennifer Graf Groneberg's Perfectly Imperfect also takes a look, although much more eloquently :), at this same issue.

Doing the Dreaming for Herself

When Bridget was born, Chris and I talked a lot about what her diagnosis meant in the scope of her life and in all of our lives. We knew things would be "different" than we'd anticipated, but we wondered, how different?

We were concerned foremost with her health. We decided we would learn whatever we could to advocate for her in every way we could. We agreed that we would focus on getting her well enough to come home. We discussed large issues like education, driving, and marriage. Would Bridget be able to attend a regular school? Would she ever drive? Was marriage out of the question for her?

We also wondered about everyday life. Would she be sick often? How would raising her be different from raising the other kids? How would their lives be impacted? Would we be able to take family vacations? What about leaving the kids with a babysitter? Would we always be worried about Bridget?

The questions were endless at first, and the process is one we needed to go through to realize: things are not much different than what we anticipated when we found out we would be adding a new member to our family. The truth is, we never know what a child will be like, what he or she will require, achieve or struggle with. We never know if a child will be healthy, independent, happy, and so on. Who's to say if any of our children will drive, go to college, get married, or live independently. We really don't know at this point. We're not consumed by the need to know how it will all play out. And, honestly, the future for our children is not for us to plan out.

Once we'd talked through all these issues, Chris and I realized that many of these things are outside of our control, and what's most important to us is that our children are happy & able to contribute to the world in some way. Each one of us has a unique personality. We all have our issues and our strengths. We will all go through times when we require more attention or more support than usual. We all have something valuable to contribute.

With Bridget, we are learning to be hopeful without expectations. We have plans and goals to help Bridget in her growth and development, and while those plans are necessary and important--we cannot be tied to them. Bridget is on her own path, and will develop in her own ways on her own time. We can provide her experiences and exposure to things which may influence her development, but her own personality and abilities will dictate what she accomplishes and when.

We don’t want others to judge her against an arbitrary standard of development or of what’s acceptable. We’ve learned that we can’t do that either. There is a fine line between wanting the best for our children, and asking that they meet our ideal. Typical, healthy or not…we cannot dream for our children.

Just as we cannot control the development and interests of any of our other children, Bridget will become who she is. We’ll give her every type of support and encouragement to be as happy, healthy and independent as she can be, but we’ll let her do the dreaming for herself.

Doing the Dreaming for Herself

When Bridget was born, Chris and I talked a lot about what her diagnosis meant in the scope of her life and in all of our lives. We knew things would be "different" than we'd anticipated, but we wondered, how different?

We were concerned foremost with her health. We decided we would learn whatever we could to advocate for her in every way we could. We agreed that we would focus on getting her well enough to come home. We discussed large issues like education, driving, and marriage. Would Bridget be able to attend a regular school? Would she ever drive? Was marriage out of the question for her?

We also wondered about everyday life. Would she be sick often? How would raising her be different from raising the other kids? How would their lives be impacted? Would we be able to take family vacations? What about leaving the kids with a babysitter? Would we always be worried about Bridget?

The questions were endless at first, and the process is one we needed to go through to realize: things are not much different than what we anticipated when we found out we would be adding a new member to our family. The truth is, we never know what a child will be like, what he or she will require, achieve or struggle with. We never know if a child will be healthy, independent, happy, and so on. Who's to say if any of our children will drive, go to college, get married, or live independently. We really don't know at this point. We're not consumed by the need to know how it will all play out. And, honestly, the future for our children is not for us to plan out.

Once we'd talked through all these issues, Chris and I realized that many of these things are outside of our control, and what's most important to us is that our children are happy & able to contribute to the world in some way. Each one of us has a unique personality. We all have our issues and our strengths. We will all go through times when we require more attention or more support than usual. We all have something valuable to contribute.

With Bridget, we are learning to be hopeful without expectations. We have plans and goals to help Bridget in her growth and development, and while those plans are necessary and important--we cannot be tied to them. Bridget is on her own path, and will develop in her own ways on her own time. We can provide her experiences and exposure to things which may influence her development, but her own personality and abilities will dictate what she accomplishes and when.

We don’t want others to judge her against an arbitrary standard of development or of what’s acceptable. We’ve learned that we can’t do that either. There is a fine line between wanting the best for our children, and asking that they meet our ideal. Typical, healthy or not…we cannot dream for our children.

Just as we cannot control the development and interests of any of our other children, Bridget will become who she is. We’ll give her every type of support and encouragement to be as happy, healthy and independent as she can be, but we’ll let her do the dreaming for herself.

Audiences Across the Country Get the Message a Second Time

Sara is a dancer, and wanted desperately to see So You Think You Can Dance Live (on tour, and here in Columbus on the exact day of her 13th birthday). We surprised her with tickets.

A little surprise awaited us, also. As the show began, a video played on a large screen above the stage. SYTYCD co-creator Nigel Lythgoe introduced the top five most memorable auditions for the 2008 season. I started to tear up as soon as the clip started for memorable audition #4, which I immediately recognized as the Brett Banford audition. Most of us in the Ds community have seen it, but for anyone who hasn't, please click on the link here and watch the video of Banford's segment on the Disability News site (along with a partial transcript of the judges' comments).

In May, 25-year-old Banford appeared on national t.v. during prime time with the show's recap of the Salt Lake City auditions. He grooved on stage, and was clearly enjoying his time in the spotlight. With great composure and with a goal to "represent" for people with disabilities, Banford said after his performance, “I’m just here to prove to people that people with disabilities can actually have a normal life and live it. And that’s what I’m here to represent.” Amidst the whooping and hollering of the audience, he continued, “It’s not about winning or losing. It’s about having fun.”

I was completely thrilled--and more than a little overwhelmed--that his audition (and message) was getting another round of play to audiences around the country. Last Wednesday night, at the Jerome Schottenstein Center on the Ohio State campus, around 10,000 people watched Banford's clip. He got lots of applause while it played--and when it was over, the woman next to me leaned to her friend and said, "That was awesome." It truly was.

Big, big kudos to SYTYCD for highlighting Banford and his message once again. And big, big kudos to Brett. You make us all proud!

p.s. The live show was AWESOME. For fans, it was well worth the cost of tickets and being out late on a school night :).

Audiences Across the Country Get the Message a Second Time

Sara is a dancer, and wanted desperately to see So You Think You Can Dance Live (on tour, and here in Columbus on the exact day of her 13th birthday). We surprised her with tickets.

A little surprise awaited us, also. As the show began, a video played on a large screen above the stage. SYTYCD co-creator Nigel Lythgoe introduced the top five most memorable auditions for the 2008 season. I started to tear up as soon as the clip started for memorable audition #4, which I immediately recognized as the Brett Banford audition. Most of us in the Ds community have seen it, but for anyone who hasn't, please click on the link here and watch the video of Banford's segment on the Disability News site (along with a partial transcript of the judges' comments).

In May, 25-year-old Banford appeared on national t.v. during prime time with the show's recap of the Salt Lake City auditions. He grooved on stage, and was clearly enjoying his time in the spotlight. With great composure and with a goal to "represent" for people with disabilities, Banford said after his performance, “I’m just here to prove to people that people with disabilities can actually have a normal life and live it. And that’s what I’m here to represent.” Amidst the whooping and hollering of the audience, he continued, “It’s not about winning or losing. It’s about having fun.”

I was completely thrilled--and more than a little overwhelmed--that his audition (and message) was getting another round of play to audiences around the country. Last Wednesday night, at the Jerome Schottenstein Center on the Ohio State campus, around 10,000 people watched Banford's clip. He got lots of applause while it played--and when it was over, the woman next to me leaned to her friend and said, "That was awesome." It truly was.

Big, big kudos to SYTYCD for highlighting Banford and his message once again. And big, big kudos to Brett. You make us all proud!

p.s. The live show was AWESOME. For fans, it was well worth the cost of tickets and being out late on a school night :).

The Trouble with Dreams

It’s normal during a pregnancy to wonder what your child may be like (we all have thoughts and ideas, hopes and dreams about what our babies might be like). The trouble with this is, if the child--for whatever reason--doesn't match up to those dreams, are we then disappointed that the child did not fulfill our dream?

The Trouble with Dreams

It’s normal during a pregnancy to wonder what your child may be like (we all have thoughts and ideas, hopes and dreams about what our babies might be like). The trouble with this is, if the child--for whatever reason--doesn't match up to those dreams, are we then disappointed that the child did not fulfill our dream?

Advocacy Starts Early

We had an experience when Bridget was a new baby that made us realize that certain people would always sell her short because of her diagnosis. We sensed very early on that she was capable of far more than what we initially heard, and that--at the very least--she deserved for us to believe in her and to fight for her.

There was a surgical doctor in the NICU that kept referring to generalities in babies with Down syndrome when managing Bridget's hospital care. He was full of doubt, and had a general unwillingness to look at Bridget as an individual.

This particular doctor was certain that Bridget would struggle eating on her own. (My instincts told me the opposite. She sent me every signal she could that she was very interested in eating by mouth.)

When Bridget was less than two weeks old (35 1/2 weeks gestational age), the surgeon delivered a huge blow to our optimism as he said flatly, "These kids tend not to do well eating by mouth. I'd like your permission to pop a G-tube in her, and send her home."

This doctor wanted to surgically implant a feeding tube in her stomach based on trends and generalities--and stereotypes. I understood that his desire to release her from the hospital was due--at least in part--to both the high cost of intensive care, and risk of infection in the hospital setting. She had almost completely recovered from her surgery, and since she was no longer a "surgical patient", he felt she should be released. He was ready to give up on her, we were not.

Chris and I felt that Bridget needed--and deserved--at least a little more time in the monitored hospital environment to grow and to work on feeding. She was a preemie, who was having brief spells of Bradycardia (decreased heart rate) and was still over a week away from being considered full-term. Still, she was showing promising signs, and her due date was not for another month.

The sucking reflex, as well as her stamina and alertness, would all likely improve as we got closer to the full-term mark.

We did not give the surgeon permission to insert the G-tube. Instead, we laid out a plan for increasing Bridget's feeds by mouth and began working with the Nutritionist and Occupational Therapists at the hospital to accomplish this. We were moved to a family-centered unit where I could room-in with Bridget and be there to feed her every time. She and I worked tirelessly for two and a half weeks, making steady progress all along. Our combined love and determination paid off. We left the hospital just over a week before Bridget's original due date on full feeds by mouth, and without tubes or monitors of any kind.


**Not all health care professionals were negative about Bridget's prognosis. We received encouragement from multiple doctors, nurses and therapists while at the hospital. We were blessed with a neonatologist who delivered Bridget's diagnosis thoroughly, and with great care and concern. We also have a wonderful pediatrician, a treasured and trusted friend and doctor, who approaches her job with compassion and creativity. She has always believed in Bridget, and in us.

**A major factor in determining when Bridget could be released from the hospital was that she needed take at least 1 1/2 ounce per feeding and show that she was gaining weight. Since she was expending so much energy just to eat, the surgeon mentioned above was convinced that even if she could take the required amount--by mouth--each time, that there was virtually no way she would gain weight.

I nursed all of our children and had tried nursing Bridget. Her swallow was not fully developed and we had to thicken her feeds, so she could not nurse directly from me. I was expressing my milk for her. I researched her nutritional requirements and found out that we could use hindmilk (rather than NeoSure) to boost her caloric intake. Basically, this is where the milk is collected in two parts (the beginning until just about two minutes after let-down, when most of the milk is emptied, and the end, when the milk is richest). The baby is then fed the latter portion, and the "foremilk" is stored for later use. I think this made a big difference in meeting the weight-gaining goal.

Advocacy Starts Early

We had an experience when Bridget was a new baby that made us realize that certain people would always sell her short because of her diagnosis. We sensed very early on that she was capable of far more than what we initially heard, and that--at the very least--she deserved for us to believe in her and to fight for her.

There was a surgical doctor in the NICU that kept referring to generalities in babies with Down syndrome when managing Bridget's hospital care. He was full of doubt, and had a general unwillingness to look at Bridget as an individual.

This particular doctor was certain that Bridget would struggle eating on her own. (My instincts told me the opposite. She sent me every signal she could that she was very interested in eating by mouth.)

When Bridget was less than two weeks old (35 1/2 weeks gestational age), the surgeon delivered a huge blow to our optimism as he said flatly, "These kids tend not to do well eating by mouth. I'd like your permission to pop a G-tube in her, and send her home."

This doctor wanted to surgically implant a feeding tube in her stomach based on trends and generalities--and stereotypes. I understood that his desire to release her from the hospital was due--at least in part--to both the high cost of intensive care, and risk of infection in the hospital setting. She had almost completely recovered from her surgery, and since she was no longer a "surgical patient", he felt she should be released. He was ready to give up on her, we were not.

Chris and I felt that Bridget needed--and deserved--at least a little more time in the monitored hospital environment to grow and to work on feeding. She was a preemie, who was having brief spells of Bradycardia (decreased heart rate) and was still over a week away from being considered full-term. Still, she was showing promising signs, and her due date was not for another month.

The sucking reflex, as well as her stamina and alertness, would all likely improve as we got closer to the full-term mark.

We did not give the surgeon permission to insert the G-tube. Instead, we laid out a plan for increasing Bridget's feeds by mouth and began working with the Nutritionist and Occupational Therapists at the hospital to accomplish this. We were moved to a family-centered unit where I could room-in with Bridget and be there to feed her every time. She and I worked tirelessly for two and a half weeks, making steady progress all along. Our combined love and determination paid off. We left the hospital just over a week before Bridget's original due date on full feeds by mouth, and without tubes or monitors of any kind.


**Not all health care professionals were negative about Bridget's prognosis. We received encouragement from multiple doctors, nurses and therapists while at the hospital. We were blessed with a neonatologist who delivered Bridget's diagnosis thoroughly, and with great care and concern. We also have a wonderful pediatrician, a treasured and trusted friend and doctor, who approaches her job with compassion and creativity. She has always believed in Bridget, and in us.

**A major factor in determining when Bridget could be released from the hospital was that she needed take at least 1 1/2 ounce per feeding and show that she was gaining weight. Since she was expending so much energy just to eat, the surgeon mentioned above was convinced that even if she could take the required amount--by mouth--each time, that there was virtually no way she would gain weight.

I nursed all of our children and had tried nursing Bridget. Her swallow was not fully developed and we had to thicken her feeds, so she could not nurse directly from me. I was expressing my milk for her. I researched her nutritional requirements and found out that we could use hindmilk (rather than NeoSure) to boost her caloric intake. Basically, this is where the milk is collected in two parts (the beginning until just about two minutes after let-down, when most of the milk is emptied, and the end, when the milk is richest). The baby is then fed the latter portion, and the "foremilk" is stored for later use. I think this made a big difference in meeting the weight-gaining goal.

Perfect

"Perfect" is subjective, not objective. It is not one arbitrary standard—what’s perfect depends on the viewer and the view.

Perfect

"Perfect" is subjective, not objective. It is not one arbitrary standard—what’s perfect depends on the viewer and the view.

Sara's Birthday

I looked at Sara leaving for school the other day--all put together, like she always is--and saw her walking straight out of my arms.

Today, Sara is thirteen--a teenager. How? I remember holding her in my arms for the first time like it was yesterday. She's in 7th grade--a young lady now--responsible, creative, ambitious, and honest. She's grown tall enough to look me in the eye and has already grown out of my shoes. I can feel her slipping out of my reach (we'll both cry when we read this).

She left today and Bridget was in my arms with her nose against mine. She was smiling sweetly and patting my back as if to say, Its going to be okay, mom. I pulled her closer and held on tight...for a long time.

Bridget is our last, and her taking longer to grow up has been a surprise gift. We're seeing steady progress--and the same stages of development in her that all the other kids went through--its just that some of the phases are elongated. She's two now, and most two-year-olds are already full-blown toddlers beginning to stretch away clearly from the "baby" phase. Bridget still smells like a baby. She's soft and warm and sweet. She gets everywhere she wants to go and has an independent streak, but she is not really walking yet. I know it won't be long before she is off and running. I've had her in my arms a little longer than the others, and truthfully, I'm enjoying this time.

Sara is fully entrenched in adolescence and all the ups and downs of teenage life. She's starting to build a life of her own. And one day, she'll leave to pursue that life on her own. And the rest of the kids will, in turn, leave on their own schedule and in their own ways. Bridget, too, I'm betting...but not for a while still. For now, she's my Lovebug, my Band-Aid, my tiny companion.

My precious oldest, my precious youngest--looking at the two of them today, I realized that I'm being eased into the gradual leaving process, and I have Bridget to soothe and comfort me throughout.

My thoughts today are a little bittersweet, but mostly I'm thinking of how much I love these children of mine--all of them--forever & ever.


p.s. Happy Birthday and lots of love also to Uncle Sid, Sally & Pops!

Sara's Birthday

I looked at Sara leaving for school the other day--all put together, like she always is--and saw her walking straight out of my arms.

Today, Sara is thirteen--a teenager. How? I remember holding her in my arms for the first time like it was yesterday. She's in 7th grade--a young lady now--responsible, creative, ambitious, and honest. She's grown tall enough to look me in the eye and has already grown out of my shoes. I can feel her slipping out of my reach (we'll both cry when we read this).

She left today and Bridget was in my arms with her nose against mine. She was smiling sweetly and patting my back as if to say, Its going to be okay, mom. I pulled her closer and held on tight...for a long time.

Bridget is our last, and her taking longer to grow up has been a surprise gift. We're seeing steady progress--and the same stages of development in her that all the other kids went through--its just that some of the phases are elongated. She's two now, and most two-year-olds are already full-blown toddlers beginning to stretch away clearly from the "baby" phase. Bridget still smells like a baby. She's soft and warm and sweet. She gets everywhere she wants to go and has an independent streak, but she is not really walking yet. I know it won't be long before she is off and running. I've had her in my arms a little longer than the others, and truthfully, I'm enjoying this time.

Sara is fully entrenched in adolescence and all the ups and downs of teenage life. She's starting to build a life of her own. And one day, she'll leave to pursue that life on her own. And the rest of the kids will, in turn, leave on their own schedule and in their own ways. Bridget, too, I'm betting...but not for a while still. For now, she's my Lovebug, my Band-Aid, my tiny companion.

My precious oldest, my precious youngest--looking at the two of them today, I realized that I'm being eased into the gradual leaving process, and I have Bridget to soothe and comfort me throughout.

My thoughts today are a little bittersweet, but mostly I'm thinking of how much I love these children of mine--all of them--forever & ever.


p.s. Happy Birthday and lots of love also to Uncle Sid, Sally & Pops!

I Can Bring Home the Bacon...

Columnist and speaker Lori Borgman is hilarious. Her commentary on contemporary life is not only funny, it is directly on point.

Borgman's article "Give us a break, Supersarah" begins, "Sarah Palin exhausts me. Watching her on the tube makes me certain I have iron-poor blood. Staring at all that abounding confidence and endless energy, I grow weaker by the moment." She later adds, "If I find out she bakes her own bread, I may hurt myself."

Politics aside, this article is just plain funny. And, in the end, there's a little plug for the "special needs parents" among us. Check it out.

***

Sarah Palin has been criticized for being on the campaign trail. People across the country have taken it upon themselves to comment and pass judgement on her for everything from her hairstyle to her job as a mother, as well as on many other topics which have little to do with the political landscape of this country. I assume she is a woman who cares about her family and has help with the kids. She has a job, and a family, and is serving this country.

***

Remember the 70's Enjoli perfume commercial with it's catchy theme song "I can bring home the bacon, fry it up in a pan, and never, never let you forget you're a man...'cause I'm a woman..." It was the height of feminism, and the song was a rally cry for women everywhere to understand: yes, we can be it all, do it all, & have it all.

Women, men and kids alike are pressed to do (and be) more than ever now. We all do the best we can with what we have, but the challenge to "do it all" flawlessly is larger than ever--for all of us.


**Lori Borgman also wrote "Some Mothers Get Babies with Something More", which is widely circulated among parents of children with a disability diagnosis.

For more, visit Lori Borgman's blog.

I Can Bring Home the Bacon...

Columnist and speaker Lori Borgman is hilarious. Her commentary on contemporary life is not only funny, it is directly on point.

Borgman's article "Give us a break, Supersarah" begins, "Sarah Palin exhausts me. Watching her on the tube makes me certain I have iron-poor blood. Staring at all that abounding confidence and endless energy, I grow weaker by the moment." She later adds, "If I find out she bakes her own bread, I may hurt myself."

Politics aside, this article is just plain funny. And, in the end, there's a little plug for the "special needs parents" among us. Check it out.

***

Sarah Palin has been criticized for being on the campaign trail. People across the country have taken it upon themselves to comment and pass judgement on her for everything from her hairstyle to her job as a mother, as well as on many other topics which have little to do with the political landscape of this country. I assume she is a woman who cares about her family and has help with the kids. She has a job, and a family, and is serving this country.

***

Remember the 70's Enjoli perfume commercial with it's catchy theme song "I can bring home the bacon, fry it up in a pan, and never, never let you forget you're a man...'cause I'm a woman..." It was the height of feminism, and the song was a rally cry for women everywhere to understand: yes, we can be it all, do it all, & have it all.

Women, men and kids alike are pressed to do (and be) more than ever now. We all do the best we can with what we have, but the challenge to "do it all" flawlessly is larger than ever--for all of us.


**Lori Borgman also wrote "Some Mothers Get Babies with Something More", which is widely circulated among parents of children with a disability diagnosis.

For more, visit Lori Borgman's blog.

More to Love

Bridget's extra chromosome translates into so much extra in all of our lives. We were talking yesterday afternoon about all the cute and funny things she does that make us smile. Adding to the previous list, here are 21 more things we love about Bridget:

1. She does a great "shoulder shimmy"--what two-year-old does this ? It's hilarious. :)

2. She "ROCKS OUT". (When she likes a song, she pumps her fists in the air, nods her head and makes "pouty lips"). Again...hilarious!

3. She likes to lay on her tummy to watch t.v., with her elbows on the floor resting her little face in her hands.

4. She sits in the stairwell and shouts for Daddy, "Da! Da!"

5. She's super enthusiastic about ice cream. She signs "ice cream" and "more" the whole time she's eating it.

6. When we ask her, "Would you like this?" (She signs "yes"). We ask, "You do?" She answers with the sweetest little, "Dooo!"

7. She can be "quiet as a mouse" (with her index finger to her lips "SHHH!"). This doesn't usually last for long.

8. She claps and yells when the crowd cheers at Kyle's football games.

9. I love it when I walk around the corner into the family room and see Bridget and one of the kids sitting on the couch listening to an iPod--each with one earbud, smiling and bopping to the music.

10. Bridget signs "banana" for her Nana :).

11. Anyone sitting at our house should prepare to have Bridget on their lap. She assumes no one minds if she climbs up and straddles them, or backs into their lap.

12. She tries to throw ping pong balls into the basketball hoop in our basement. Ping pong balls are lighter than air and Bridget is super short, so her shots go up about 12-18 inches. That doesn't stop her from trying, though. Good luck with that, Bridget :)!

13. She will remove hats or sunglasses from anyone within reach. She will immediately give them back, but will take them off again if given a chance.

14. She loves to take turns.

15. She always wakes up happy, and wants to snuggle before she gets going.

16. She likes to close any cupboard, drawer or door left open...that includes the trash compactor.

17. She goes to the front door every morning to wave good-bye to the kids before they get on the bus. Recently, she has started standing in the doorway. I love the look on the kids' faces when they look back to see her smiling and waving.

18. She's the clean-up crew/choking hazard police. She finds small objects or crumbs on the floor and hands them over. It's like, "Here, I'm not supposed to have this" or "This is not supposed to be on the floor". She'll come all the way across the first floor to hand me a speck-sized pencil shaving or a piece of dried macaroni :).

19. She always burps when asked. If I'm ever not sure where she's gone, I'll say, "Bridget can you burp?" It's so loud, there is no question as to her location...and I am hard of hearing :). If she burps for real and on accident, she clasps her hands at her chest then leans forward and giggles before unleashing another contrived belch. I thought only 8 year old boys found burps to be so funny.

20. She does everything else we ask her to do only when she wants to.

21. She hums while she plays.

More to Love

Bridget's extra chromosome translates into so much extra in all of our lives. We were talking yesterday afternoon about all the cute and funny things she does that make us smile. Adding to the previous list, here are 21 more things we love about Bridget:

1. She does a great "shoulder shimmy"--what two-year-old does this ? It's hilarious. :)

2. She "ROCKS OUT". (When she likes a song, she pumps her fists in the air, nods her head and makes "pouty lips"). Again...hilarious!

3. She likes to lay on her tummy to watch t.v., with her elbows on the floor resting her little face in her hands.

4. She sits in the stairwell and shouts for Daddy, "Da! Da!"

5. She's super enthusiastic about ice cream. She signs "ice cream" and "more" the whole time she's eating it.

6. When we ask her, "Would you like this?" (She signs "yes"). We ask, "You do?" She answers with the sweetest little, "Dooo!"

7. She can be "quiet as a mouse" (with her index finger to her lips "SHHH!"). This doesn't usually last for long.

8. She claps and yells when the crowd cheers at Kyle's football games.

9. I love it when I walk around the corner into the family room and see Bridget and one of the kids sitting on the couch listening to an iPod--each with one earbud, smiling and bopping to the music.

10. Bridget signs "banana" for her Nana :).

11. Anyone sitting at our house should prepare to have Bridget on their lap. She assumes no one minds if she climbs up and straddles them, or backs into their lap.

12. She tries to throw ping pong balls into the basketball hoop in our basement. Ping pong balls are lighter than air and Bridget is super short, so her shots go up about 12-18 inches. That doesn't stop her from trying, though. Good luck with that, Bridget :)!

13. She will remove hats or sunglasses from anyone within reach. She will immediately give them back, but will take them off again if given a chance.

14. She loves to take turns.

15. She always wakes up happy, and wants to snuggle before she gets going.

16. She likes to close any cupboard, drawer or door left open...that includes the trash compactor.

17. She goes to the front door every morning to wave good-bye to the kids before they get on the bus. Recently, she has started standing in the doorway. I love the look on the kids' faces when they look back to see her smiling and waving.

18. She's the clean-up crew/choking hazard police. She finds small objects or crumbs on the floor and hands them over. It's like, "Here, I'm not supposed to have this" or "This is not supposed to be on the floor". She'll come all the way across the first floor to hand me a speck-sized pencil shaving or a piece of dried macaroni :).

19. She always burps when asked. If I'm ever not sure where she's gone, I'll say, "Bridget can you burp?" It's so loud, there is no question as to her location...and I am hard of hearing :). If she burps for real and on accident, she clasps her hands at her chest then leans forward and giggles before unleashing another contrived belch. I thought only 8 year old boys found burps to be so funny.

20. She does everything else we ask her to do only when she wants to.

21. She hums while she plays.

Important Reading for New Parents and Beyond

For anyone who hasn't seen this from the National Down Syndrome Congress...it is well worth reading:

A Baby is a Baby First

Important Reading for New Parents and Beyond

For anyone who hasn't seen this from the National Down Syndrome Congress...it is well worth reading:

A Baby is a Baby First

What Not to Say

One day last fall, Bridget and I went shopping while the kids were at school. She was extra loud in her stroller that day--not fussy, just making all kinds of noise. The store was virtually empty, so I was sure we weren't bothering anyone.

I wasn't surprised when we went up to check out and the clerk said with a smile, "Boy, someone sure has a lot to say today!" I smiled back, "Yes, she does." Without missing a beat, she replied, "My uncle was a Down's. He died."

I was more than stunned, and I'm pretty sure my mouth was hanging wide open because she continued quickly, "Oh, he was like 65 years old when he died a few years ago. We all loved him a lot."

I've seen this woman many times at the same store. She's always friendly, and I know she didn't intend to seem insensitive...more likely the opposite.

I'm always amazed to hear things like "He was a Down's"--and I hear variations of that statement often. It always stings a little, but not like it did when Bridget was small, and when I wasn't sure what to make of many things people said about her.

The woman in the store probably had no idea how her statement made me feel, as most people who use "outdated language" do not realize what they are really saying.

I 'd love for others to begin to understand that disability is natural, and that all people (regardless of appearance or ability) should be treated with respect and dignity.

Down syndrome is a medical diagnosis--a condition--that is part of a person at conception. Referring to Bridget as "a Down's," or as "a Down syndrome child," is loaded with stereotype and inherent discrimination, even if not intended. It suggests that Ds is the most important part of Bridget, that somehow she is Down syndrome.

Down syndrome is not a disease. Bridget does not "suffer" from it. She is not a "Down's", a "Down's baby", or a "Down syndrome child". She is a child...a beautiful and amazing little girl with an extra chromosome. She has Down syndrome.

The current thought in the United States is that "Down syndrome", or "Ds" (both with a lowercase /s/ in syndrome), is correct. "Down's syndrome" is not. To shorten, I've heard some people say "She has Down". I don't know if that is considered "correct" or not...but I think it sounds strange.

Here's a link to Kids Together, Inc., a non-profit organization which provides information and resources for children and adults with disabilities--where you can find information on People First Language among other important topics.