More Than a Number

My daughter has Down syndrome. She is not Down syndrome.

I usually cringe a little (sometimes a lot) when I hear or read a professional assessment of Bridget (from doctors, therapists, service coordinators or educators), because Bridget cannot be described by a certain number of chromosomes, by a list of health concerns, by a score on a standardized test, or by the answers to questions on a fill-in-the-bubble developmental inventory.

She is an amazing little girl who deserves to be seen as such.

Wendy echoed this thought on Zip-Perdue-Dee-Dah the other day:

I think what bothered me was that here we are at the start of the next chapter and to the powers that be Kira is a pile of paperwork and "Down syndrome". And while I have no doubt that they will love my daughter, it's not because she has Down syndrome. She's my smart, beautiful, funny daughter not a bunch of test results and check marks on a development chart.

Before Bridget's evaluations to see if she would qualify to receive preschool services and therapy through our local schools, I worried about the very same things. I didn't want to overwhelm school district personnel with volumes of information about Bridget, but I wanted them to see more about her than the limited perspective formal evaluations would provide. I knew the evaluations would detail Bridget's delays and areas of need. I wanted the team to see her many skills and abilities, to see that she is loved and cherished and supported, and to understand her huge potential. I wanted them to see her as a person. So this is what I sent in with her paperwork...

A Snapshot of Bridget at Age 3

Bridget is a social, sweet little girl who loves to explore, pretend, and laugh. She’s alert, expressive, playful, secure and spirited. She takes turns, consoles, and interacts with others.

Bridget knows just what she wants and how to get it. She communicates through a combination of signs, spoken words, sounds, gestures and facial expressions.

She understands most of what she hears, and remembers most of what she learns. She likes routines, but is also usually willing to try new things.

She’s generally agreeable, but has ideas of her own that she will make known. Bridget is affectionate and pays close attention to what is going on around her. She’s physically strong, and strong-willed.

She’s showing an interest in—and emerging skills in—counting, letters, recognizing shapes, drawing, running, jumping, enjoying books, large motor play, and spoken language.

Bridget is capable of so much and full of potential.

We look forward to seeing her grow and enjoy school next year!

Mission Statement For Bridget's Preschool Services

We believe that Life is a gift, and that Bridget is a gift. We believe that all people are always in the process of becoming--and that all people seek to find meaning in Life. We value Bridget as a person and as a family member.

As her parents, our goal is to be educated and able to make informed decisions about Bridget's care and to be the very best advocates for her in all arenas. We will approach her learning with creativity and dedication. We will work willingly with teachers, therapists, administrators and other care providers to create and carry out an appropriate plan for Bridget’s growth and participation in the classroom.

We’d like to see cues-based instruction whenever possible, or encouraging Bridget to acquire skills as she shows readiness (instead of "teaching" her from a pre-existing plan based on standard development scales).

Bridget is reaching milestones on her own timeline, and has her own set of talents and limitations. We’d like to pay attention to her gifts while offering her opportunities to grow.

We believe strongly in Bridget--in her abilities and potential--and in her right to be treated with love and respect. We realize that she will benefit from specialized services and are committed to giving her every type of support and encouragement to be as happy, healthy and independent as she can be.

Bumble Bee, Waiting for Bus

Every morning, Bridget waits for her bus with great anticipation. She LOVES her bus driver and her bus aide. We wait on the sidewalk in front of our house, which is about twenty paces from the front door.

I ask Bridget, "Do you hear your bus coming?" To which she replies, "Hear it. (I don't hear it)". When it begins to come down the street and around the bend toward our house (and she does hear it), she begins to jump up and down.

She claps and cheers, and I always think how great it must feel to be greeted like that on a daily basis. The adults on the bus always pull up with huge smiles. Today, they were greeted by a bouncing Bumble Bee:




I'll bet those antennae lasted all of two seconds once she got on the bus :)...

A New Infatuation

Emmy has one American Girl doll, a "my twin" doll that Santa brought her a few years back. She rarely plays with it, but has a renewed interest since she'll be attending a tea party with the doll soon.

She brought the American Girl doll downstairs with her this morning. Bridget's eyes lit up and she quickly rushed over to grab the doll from Emmy. When Emmy offered her the baby doll nearby instead, Bridget pushed it aside and again went to grab the American Girl doll.

Emmy let her have it, and Bridget was thrilled. She hugged and kissed that doll for two hours. She held her hands and studied her feet. She brushed her hair and examined her face very closely. I guess someone will be getting a toddler/girl doll for Christmas this year. Baby dolls are so 5 minutes ago :).

Overdue.

So yes, blogging has taken a backseat to everyday life. Here's what I've been doing:


...learning how to tie a tie! Okay, I really did have to use this photo tutorial to get Kyle's tie figured out while Chris was out of town, but I have been doing a few other things as well. Ahem.

How about a little update on Miss Bridget (with more to come soon...I promise)!

New things she's saying:

"Where cup? See it. (i.e., I don't see it.)"

"Hap-py Birth-day to Bridgey!"

"Cup, pwease."

"Map!" (which means...Max & Ruby, her new favorite show)

"Boy!" "Girl!"

"Hot!" "Cold!"

"I" "Me" "You"

"OKAY!"

"Moe Juice!" "Moe Nilk!" "Moe Cup!" "Mom! Cup!" This girl likes her drinks! And her cheese, but that is another story for another day :).

Overdue.

So yes, blogging has taken a backseat to everyday life. Here's what I've been doing:


...learning how to tie a tie! Okay, I really did have to use this photo tutorial to get Kyle's tie figured out while Chris was out of town, but I have been doing a few other things as well. Ahem.

How about a little update on Miss Bridget (with more to come soon...I promise)!

New things she's saying:

"Where cup? See it. (i.e., I don't see it.)"

"Hap-py Birth-day to Bridgey!"

"Cup, pwease."

"Map!" (which means...Max & Ruby, her new favorite show)

"Boy!" "Girl!"

"Hot!" "Cold!"

"I" "Me" "You"

"OKAY!"

"Moe Juice!" "Moe Nilk!" "Moe Cup!" "Mom! Cup!" This girl likes her drinks! And her cheese, but that is another story for another day :).

Posting, Interrupted :)

We're all fine here. Please forgive the lack of posts recently. I planned on posting every single day of October, but my computer had other plans :). We've had a few technology glitches, and then between birthday parties, basketball try-outs, and no-school days (plus the rest of our regularly scheduled activities), I just haven't been able to write something meaningful here each day.

I have been busy recently, though, thinking and talking about Down syndrome, even more so than is typical for me. I'll be back soon to talk more about that..

Inclusion

Inclusion is not a "favor" for students with disabilities. Inclusion is a gift we give ourselves, the gift of understanding, the gift of knowing that we are all members of the human race...

- Mara Sapon-Shevin

Inclusion

Inclusion is not a "favor" for students with disabilities. Inclusion is a gift we give ourselves, the gift of understanding, the gift of knowing that we are all members of the human race...

- Mara Sapon-Shevin

A Look Back: Starting Solids

Wow, these pictures bring back memories! I was nervous and excited to try solids with Bridget.

We gave her oatmeal cereal when she was about six months old. We then moved to apples and sweet potatoes within a few weeks. We used the small maroon spoons for her first year, and they were perfect.

Bridget did very well with stage one baby foods, cereal and yogurt (she had more trouble with crunchy and chewy textures--which I will cover in a future post--as she was not moving food from the sides of her mouth to "chew" with her gums...she had no teeth until she was 16 months old!).

I also cooked and pureed all kinds of squash, berries and other fruits and veggies as well as a wide variety of soups. We started giving her yogurt when she was about eight months old--Stoneyfield Farm O'Soy because I thought she might have a milk intolerance. (She still drinks soy milk today, although I have switched her over to regular, organic yogurt.)

Bridget has always eaten a wide variety of healthy foods. She has a great appetite and has never been picky about temperature or flavor, although she prefers seasoned or spicy foods. She has always done fine with different textures as well, although she did not like finding chunks of peaches in her yogurt and would growl when she got one :).

We moved from pureed baby foods to soft diced foods like banana and avocado, which she was able to finger-feed herself by the time she was about a year old.

Although we've had to take some extra steps to provide Bridget with a safe and nutritious diet, Bridget is absolutely worth it. I am happy to answer specific questions, so fire away if you have any!

Learning to Eat, Continued

In the months just after Bridget was born--when she still needed her milk to be thickened--I was able to express my milk and then safely let her "practice" nursing. We did this every day, at least once. She was almost always willing to try, and apparently got just enough hindmilk to keep her interested. Anyone who has been through continual pumping knows how much work it takes. It is truly a labor or love. Then again, so is attempting breastfeeding after months and months of bottle feeding (especially when you've been told your baby most likely will not be able to nurse effectively). I had a strong feeling that Bridget would be able to get the hang of it, though I couldn't imagine what it would be like to actually get to nurse her.

Once she was cleared for thin liquids, I began to transition her to breastfeeding by nursing once a day to start. Within a few days, she was nursing for all but her morning feeding (when she was the least sleepy and most hungry!). After about a week, she was nursing every feeding. It took some getting used to for both of us. Positioning was key, as were listening for her swallows and taking her off during let-down. After about a week, we were "working" less and feeding time became truly enjoyable. Within two weeks, there were no issues at all and she was nursing like a pro.

From my journal of Bridget's first year:

Life just got so much easier!

I can't believe Bridget is nursing! I was trying not to get my hopes up in case it didn't work out, but I have been waiting for this day since she arrived. I am overcome with emotion every single time I feed her.

Today the light was streaming through the window into our bedroom as I was feeding her, looking at her beautiful, sweet face and holding her little hand. (Bridget always holds my hand or shirt when she's eating). She is my chubby, gentle, sweet angel. Sometimes I can't believe she is ours. I wouldn't want to be anywhere else in the world than where I am right now.

I took the last picture in yesterday's post the same day I wrote this entry. I wanted to always remember the sweetness and joy of that moment. It still makes me teary-eyed.

More on starting solids tomorrow...

A Look Back: Learning to Eat

We spent nearly a month at Children’s Hospital with Bridget, and those first few weeks were both exhilarating and exhausting. She recovered from her surgery quickly, and was ready to begin tube feedings within a few days later.

As is typical in a NICU setting, Chris and I had no input on “the plan” for Bridget’s recovery. But, as soon as I was able to spend time with her, my mothering instincts took over, and all I wanted to do was take care of her and protect her.

I noticed right away that she would turn her head toward me when she heard my voice, and that she would start rooting every two hours just like all of our other kids did as babies, only I wasn’t allowed to feed her (or even hold her at first).

The plan for her recovery was measured and prescribed according to stringent standards, for her safety and best interest. And while I understood that, I couldn't wait for the time to come when she had recovered enough so I could step in and take over for the doctors, nurses and machines.

Bridget began getting my milk through a tube in her nose about 5 days after her surgery. She tolerated that well, so she was given a bottle 2 days later. She made a few strange, high-pitched noises the first couple of times she ate by mouth, and while she started off vigorously, she tired after about 10 minutes. A video swallow study was ordered, which showed that she was aspirating slightly while she was eating. That’s why she would “shut down” after a certain period of time. She was trying to keep herself safe. We were asked to thicken her feeds with a clear, non-nutritive gel.

I had to express my milk, thicken it, and then feed it to her in a bottle. Essentially, the milk was so thick that it was like “sucking pudding through a straw,” as one therapist put it. She could not finish a whole bottle (one and a half ounces) in 30 minutes or less. Still, she had a strong desire to eat. We asked for more time for her to try to learn to feed by mouth, since she was showing so many positive signs.

“These kids,” one surgeon explained, “tend not to do well with feeding by mouth.” He felt strongly that she would either go home on a feeding tube, or would be back to get one at some point. After attempting only a few bottles, he asked our permission to “pop a G-tube in her, and get her home”.

To leave the hospital without a tube, he said, she needed not only to take full feedings by mouth, but also to prove she could gain weight doing it. He was concerned that she would expend too much energy eating, and would not be able to gain weight even if she could take the full amount at all feedings by mouth (which he also felt was highly unlikely). I don’t know that he ever really considered her, though. “This kid” clearly has the desire to eat, I thought, and I have no reason to assume that she doesn’t have the ability. At the very least, she deserves the chance to learn to eat.

So I learned early on that I would need to fight for Bridget—just as I’d do for any of my other children—only that there would likely be more circumstances when she’d need my advocacy.

At the time of this conversation with the surgeon, Bridget was just barely 36 weeks (gestational age) and had only been given bottles to try a few times. In addition to having Down syndrome, she was a preemie recovering from surgery, but she sucked like crazy on her pacifier and was rooting everywhere when she was near me or heard my voice. She was waking, hungry, every two and a half hours. If I was nursing her, I would have been feeding her on-demand. This kid wanted to eat.

We bought enough time in the monitored hospital environment that we were able to have the swallow study repeated. The second test showed that her swallow had continued to develop, and that she was able to safely handle liquid that was only slightly thickened. That, combined with the fact that she reached 37 weeks (gestational age), must have made a huge difference. She was waking for every feed and quickly began taking the full bottle every time it was offered to her. Still, she was limited in not only when she could take food by mouth, but in how much she could take. Working up to all feeds by mouth was a deliberate, gradual process.

I spent nearly two weeks around the clock at the hospital with Bridget working on feeding. There were times that our doctors insisted we feed Bridget through a tube in her nose, rather than by mouth, to conserve her energy. It made sense to some degree, but I watched her rooting while the nurse poured my milk into her feeding tube. Her instincts were strong and in tact, and it was very difficult for me to stand by and watch, when I should have been nursing her on demand, and at home.

When I was able to feed her by bottle, I often cried. I knew she was giving it everything she had. I could tell that she was working so hard to remember suck-swallow-breathe, suck-swallow-breathe. It must have been demanding on her little body to have to put forth so much energy to get the thickened milk out of the bottle. But, her effort was strong and her determination was clear. She was doing her part…

Sometimes (and usually multiple times within a feeding) she would fall asleep eating and would seem like she was completely done trying. I’d give her a few minutes and then try her again. With her eyes still closed, she would begin sucking like crazy. When she would slow to the point that I thought she would give up, I would rub her arm or cheeks and whisper to her, “You can do it. Just one more try.” With her eyes still closed and arms at her sides, she would vigorously begin again. It was endearing and hilarious at the same time. Just when you thought her effort was fading, she would pop back up and give it another try. She just blew me away.

One night we had a nurse with an accent so thick that I could hardly understand anything she said. This nurse was very attentive, and came in to wake me when it was time for Bridget’s feedings. She brought in each tiny bottle and stood quietly for a few minutes to watch. Bridget would start out great guns, and then gradually slow down and nearly stop. I had to coax her to keep at it, but I knew that every bottle we did not finish meant that we were either going to have to stay longer, or we were getting closer to that G-tube. Honestly, I would have done whatever was best for Bridget, but deep down I knew she was nearly ready to come home without a feeding tube. The nurse would leave and return about 20 minutes later. Each time, the bottle was nearly full when she left, and gone when she returned. Her smile got bigger and bigger with each feeding. She was clearly moved by our success. In the morning as her shift ended, she came into the room, leaned down beside me, touched my arm and said clearly and with great sincerity, “I think she felt in her heart…your wish for her.” I know she did... Bridget was able to leave the hospital just days later without medications, monitors, or tubes of any kind.

I expressed milk for Bridget for nearly five months, until she was cleared for thin liquids, when I began nursing her exclusively. The transition was a smooth one. After about a week, it seemed like she'd always been a breast-fed baby. I nursed her until she was 18 months old.

More on that--and on beginning solids--tomorrow.

A Look Back: Learning to Eat

We spent nearly a month at Children’s Hospital with Bridget, and those first few weeks were both exhilarating and exhausting. She recovered from her surgery quickly, and was ready to begin tube feedings within a few days later.

As is typical in a NICU setting, Chris and I had no input on “the plan” for Bridget’s recovery. But, as soon as I was able to spend time with her, my mothering instincts took over, and all I wanted to do was take care of her and protect her.

I noticed right away that she would turn her head toward me when she heard my voice, and that she would start rooting every two hours just like all of our other kids did as babies, only I wasn’t allowed to feed her (or even hold her at first).

The plan for her recovery was measured and prescribed according to stringent standards, for her safety and best interest. And while I understood that, I couldn't wait for the time to come when she had recovered enough so I could step in and take over for the doctors, nurses and machines.

Bridget began getting my milk through a tube in her nose about 5 days after her surgery. She tolerated that well, so she was given a bottle 2 days later. She made a few strange, high-pitched noises the first couple of times she ate by mouth, and while she started off vigorously, she tired after about 10 minutes. A video swallow study was ordered, which showed that she was aspirating slightly while she was eating. That’s why she would “shut down” after a certain period of time. She was trying to keep herself safe. We were asked to thicken her feeds with a clear, non-nutritive gel.

I had to express my milk, thicken it, and then feed it to her in a bottle. Essentially, the milk was so thick that it was like “sucking pudding through a straw,” as one therapist put it. She could not finish a whole bottle (one and a half ounces) in 30 minutes or less. Still, she had a strong desire to eat. We asked for more time for her to try to learn to feed by mouth, since she was showing so many positive signs.

“These kids,” one surgeon explained, “tend not to do well with feeding by mouth.” He felt strongly that she would either go home on a feeding tube, or would be back to get one at some point. After attempting only a few bottles, he asked our permission to “pop a G-tube in her, and get her home”.

To leave the hospital without a tube, he said, she needed not only to take full feedings by mouth, but also to prove she could gain weight doing it. He was concerned that she would expend too much energy eating, and would not be able to gain weight even if she could take the full amount at all feedings by mouth (which he also felt was highly unlikely). I don’t know that he ever really considered her, though. “This kid” clearly has the desire to eat, I thought, and I have no reason to assume that she doesn’t have the ability. At the very least, she deserves the chance to learn to eat.

So I learned early on that I would need to fight for Bridget—just as I’d do for any of my other children—only that there would likely be more circumstances when she’d need my advocacy.

At the time of this conversation with the surgeon, Bridget was just barely 36 weeks (gestational age) and had only been given bottles to try a few times. In addition to having Down syndrome, she was a preemie recovering from surgery, but she sucked like crazy on her pacifier and was rooting everywhere when she was near me or heard my voice. She was waking, hungry, every two and a half hours. If I was nursing her, I would have been feeding her on-demand. This kid wanted to eat.

We bought enough time in the monitored hospital environment that we were able to have the swallow study repeated. The second test showed that her swallow had continued to develop, and that she was able to safely handle liquid that was only slightly thickened. That, combined with the fact that she reached 37 weeks (gestational age), must have made a huge difference. She was waking for every feed and quickly began taking the full bottle every time it was offered to her. Still, she was limited in not only when she could take food by mouth, but in how much she could take. Working up to all feeds by mouth was a deliberate, gradual process.

I spent nearly two weeks around the clock at the hospital with Bridget working on feeding. There were times that our doctors insisted we feed Bridget through a tube in her nose, rather than by mouth, to conserve her energy. It made sense to some degree, but I watched her rooting while the nurse poured my milk into her feeding tube. Her instincts were strong and in tact, and it was very difficult for me to stand by and watch, when I should have been nursing her on demand, and at home.

When I was able to feed her by bottle, I often cried. I knew she was giving it everything she had. I could tell that she was working so hard to remember suck-swallow-breathe, suck-swallow-breathe. It must have been demanding on her little body to have to put forth so much energy to get the thickened milk out of the bottle. But, her effort was strong and her determination was clear. She was doing her part…

Sometimes (and usually multiple times within a feeding) she would fall asleep eating and would seem like she was completely done trying. I’d give her a few minutes and then try her again. With her eyes still closed, she would begin sucking like crazy. When she would slow to the point that I thought she would give up, I would rub her arm or cheeks and whisper to her, “You can do it. Just one more try.” With her eyes still closed and arms at her sides, she would vigorously begin again. It was endearing and hilarious at the same time. Just when you thought her effort was fading, she would pop back up and give it another try. She just blew me away.

One night we had a nurse with an accent so thick that I could hardly understand anything she said. This nurse was very attentive, and came in to wake me when it was time for Bridget’s feedings. She brought in each tiny bottle and stood quietly for a few minutes to watch. Bridget would start out great guns, and then gradually slow down and nearly stop. I had to coax her to keep at it, but I knew that every bottle we did not finish meant that we were either going to have to stay longer, or we were getting closer to that G-tube. Honestly, I would have done whatever was best for Bridget, but deep down I knew she was nearly ready to come home without a feeding tube. The nurse would leave and return about 20 minutes later. Each time, the bottle was nearly full when she left, and gone when she returned. Her smile got bigger and bigger with each feeding. She was clearly moved by our success. In the morning as her shift ended, she came into the room, leaned down beside me, touched my arm and said clearly and with great sincerity, “I think she felt in her heart…your wish for her.” I know she did... Bridget was able to leave the hospital just days later without medications, monitors, or tubes of any kind.

I expressed milk for Bridget for nearly five months, until she was cleared for thin liquids, when I began nursing her exclusively. The transition was a smooth one. After about a week, it seemed like she'd always been a breast-fed baby. I nursed her until she was 18 months old.

More on that--and on beginning solids--tomorrow.

Oral-Motor Issues in Kids with Down Syndrome

When Bridget was born and diagnosed with Down syndrome, Chris and I wondered how raising her would be different than parenting our other kids.

Like most other parents of children with Ds, as we learned about the condition, we heard about the challenges that often come with a diagnosis of Down syndrome. We had to sort through the many health and developmental issues that are common in people with Ds and figure out what applied to Bridget, and therefore to us.

People with Down syndrome have a wide variety of skills and challenges, just like anyone else. Yes, there are some issues that are more common in people with Ds, but no two people with Ds are exactly alike. And while it is true that there is no such thing as a mild case of Down syndrome (you either have it or you don't), it is also true that some people with Ds have greater challenges than others.

I'm not an expert, but it seems like children with major medical issues are often more delayed in reaching milestones than kids who do not have health challenges (any child, not just kids with Ds). Kids with Down syndrome who also have major health challenges are often significantly delayed in reaching milestones of all kinds. Though once those health issues resolve (after heart surgery, for example, or after vision and hearing issues are addressed), the child often begins to make up for lost time and begins to "catch up".

Bridget has always been very healthy. She had a very small atrial septal defect (ASD), but it did not cause problems for her and had closed by the time she turned one year old.

She had surgery the day she was born (to correct a relatively minor abdominal wall malformation) and was born prematurely (at 34 weeks). She recovered quickly from the surgery, but was still having occasional "Brady's"--brief episodes when her heart rate would drop--a common issue in preemies. And, as soon as she was able to begin eating by mouth (when she was about a week old), it became clear to us that her swallow was not fully developed. She stayed in the hospital for nearly a month, where she could be in a safe, monitored environment until the random dropping heart-rates resolved and swallowing issues improved.

Helping Bridget learn to eat by mouth was our first major challenge, and over time we learned that feeding issues would be one of our two biggest hurdles in the first several years of life with Bridget. A related oral-motor skill, speech, would prove to be the other.

Since feeding and speech concerns are often related, and are both common in kids with Down syndrome, my next several posts will cover these issues in depth.

Speech-Language Pathologist Sara Rosenfeld Johnson's blog, Sara's Feeding and Speech Thoughts, is a great resource for parents looking for information on these topics.

More tomorrow...

Wordless Wednesday = Wordy Thursday

Somehow I missed yesterday! And I was on my blog several times. The cold, rainy days are starting to run together! To make up for it, I'll post twice today. Those speech and feeding posts are in the cue. They are big issues, with lots to talk about and many links to pass along. And I'll get the ball rolling on those later today.

On another note all together, I didn't set out on a fishing expedition for compliments with that last post, but was so happy to hear how Bridget's blog impacts others. I left a response in the comment section, but here it is again for those who don't browse comments :)...

Thank you all so much for the kind words!

I thought a lot about whether I wanted to start a blog about our life with Bridget. I didn't know if anyone would read it. I wondered if I should write about each of the kids (who are equally as wonderful and interesting and adored). But that would just be bragging :). I figure I can get away with it here (about Bridget) because so many people can't imagine life with a child with Down syndrome. I'm painting them a picture (and bragging a little. ahem.).

I decided the blog is one way I can advocate for Bridget (to help others see how amazing she is). At the same time, the blog is meant to help parents with a new diagnosis. By virtue of the subject matter, the blog accomplishes both. Multi-tasking at its best :).

I also decided that I'd be completely satisfied if this blog helped just one other person. I think it has, and I am.

I am happy to give others a peek into our life and to help spread Bridget's Light.

I know there are people out there who can't imagine what life must be like for us. I know there are parents with a new diagnosis who are searching for a ray of hope. I know there are other parents of children with Ds who are looking to exchange ideas, for support and for a safe place to express themselves.

I didn't imagine that I'd find so many other kids, parents and families who would inspire me and support us in return.

Good things all around..

Thank you so much for reading!

Your Turn

What have you found of interest on Bridget's Light? What keeps you coming back? Is there anything you'd like to see here more often (or less often)?



If you regularly read Bridget's blog, or if you have a blog I haven't yet seen, please leave a comment and tell me a little bit about yourself. I'd love to know more about my frequent flyers!

Your Turn

What have you found of interest on Bridget's Light? What keeps you coming back? Is there anything you'd like to see here more often (or less often)?

If you regularly read Bridget's blog, or if you have a blog I haven't yet seen, please leave a comment and tell me a little bit about yourself. I'd love to know more about my frequent flyers!

With Love

When I look at my daughter,
I see purity, courage and strength.
To me, she is simply beautiful.
She is perfect.

Preschool Update #2 - October

Bridget's first preschool experience is shaping up to be very much like what I remember the other kids doing in preschool--with a few modifications.

Bridget sits in a cube chair during circle time (which gives her support and boundaries), which I don't remember seeing in other preschool classrooms. There are about five cube chairs in Bridget's classroom and they all get used :). She also has supportive chairs available for when she does artwork or fine motor work like drawing. That way, she doesn't have to work on balance or core strength when she is practicing fine motor skills and can put her efforts into using her hands and arms more effectively.

There is a wider variety of writing utensils offered in Bridget's classroom than I've seen in a typical classroom, so each child can find one that works best. There also seem to be a wider variety of manipulatives and sensory objects. There are more (trained) adults in the room on a regular basis than there are in most preschool classes. Otherwise, it seems very similar to any other preschool classroom.

From weekly newsletters (and from the crafts that have come home in Bridget's backpack, like the duck with "feathers" shown to the right), the main themes so far have been very typical: friendship, farm animals, apples, the letters of the alphabet, and pumpkins. Her class is taking a field trip to the pumpkin patch this week (I will try to post pictures).

I get an informal written report from Bridget's therapists on a weekly basis. So far, they are saying that Bridget is "following directions and transitioning well between activities". She is also "talkative and engaged" and "eager to participate".

One of the goals on her IEP is to increase the length of time she spends on "non-preferred" activities (i.e., things she doesn't want to do), so each of her therapists is encouraging her to "stay with" tasks rather than quickly moving from task to task. Good luck with that :)! Miss Bridget has a mind of her own and doesn't want to do things she, well, doesn't want to do. Not a surprise, there.

Her IEP, for the most part, is filled with things that Bridget has shown an interest in doing, or skills we believe are "functional skills" well within her reach which would be important to her participation in the classroom. Our goal was for most--if not all--of the items on her IEP to be things which would help her to be happier, healthier, or more independent (not just check marks on a standard development chart).

A few of the items on Bridget's IEP: learning classroom routines (with the help of visual supports and cues, such as picture cards and a visual clock), refining grasping skills necessary for writing down the road, saying her name, increasing the clarity of her speech (and increasing her spoken vocabulary), and encouraging large motor progress so she is able to better access and take full advantage of all that is offered on the playground and in the classroom.

Bridget's day is filled with all the typical things you usually find at preschool: reading, singing, pretend play, large motor play, arts and crafts, snack, etc. Here's a quick rundown of what her therapists are working on additionally:

OT - Bridget loves music, so her OT is incorporating songs and finger plays into their time together to help isolated finger movements and bilateral skills (a preparation for other fine motor work). She is also working with lacing shapes, puzzles, tongs, handwriting--lines and curves & imitating strokes (in preparation for writing the "B" in her name), and playing with pegs in therapy putty.

PT - Bridget's PT took a job with the local school system over the summer, so she basically moved with us from EI to preschool. The continuity has been awesome. She is working with Bridget on balance and core control (trampoline, swing, stepping on and off a mat, going up and down a ramp, standing on a beam, and going over obstacles & up and down stairs). They have also been working toward running ("fast feet"--which is hilarious to watch) and jumping.

Speech - Our SLP is working on consonant-vowel combinations with Bridget in an effort to help her enunciate sounds and words. She is also helping Bridget say the names of classmates and encouraging her to use two (or more) word requests and phrases ("Where Katie?" or "More tea.") As with the other therapies, they do most of their "work" through play, including reading and pointing to objects in Bridget's favorite books, singing her favorite songs, and sharpening speech skills through pretending (tea parties and pretending to talk on the phone, among other things).

Bridget loves the one-on-one attention from her teachers and therapists when she gets it. "Therapy" is often "playing" in small groups with classmates (typical peer models), so she is never out of the loop for long.

I am happy to answer any further questions for parents with preschool in the near future. Leave a comment here so others can read the questions and responses :).

Preschool Update #2 - October

Bridget's first preschool experience is shaping up to be very much like what I remember the other kids doing in preschool--with a few modifications.

Bridget sits in a cube chair during circle time (which gives her support and boundaries), which I don't remember seeing in other preschool classrooms. There are about five cube chairs in Bridget's classroom and they all get used :). She also has supportive chairs available for when she does artwork or fine motor work like drawing. That way, she doesn't have to work on balance or core strength when she is practicing fine motor skills and can put her efforts into using her hands and arms more effectively.

There is a wider variety of writing utensils offered in Bridget's classroom than I've seen in a typical classroom, so each child can find one that works best. There also seem to be a wider variety of manipulatives and sensory objects. There are more (trained) adults in the room on a regular basis than there are in most preschool classes. Otherwise, it seems very similar to any other preschool classroom.

From weekly newsletters (and from the crafts that have come home in Bridget's backpack, like the duck with "feathers" shown to the right), the main themes so far have been very typical: friendship, farm animals, apples, the letters of the alphabet, and pumpkins. Her class is taking a field trip to the pumpkin patch this week (I will try to post pictures).

I get an informal written report from Bridget's therapists on a weekly basis. So far, they are saying that Bridget is "following directions and transitioning well between activities". She is also "talkative and engaged" and "eager to participate".

One of the goals on her IEP is to increase the length of time she spends on "non-preferred" activities (i.e., things she doesn't want to do), so each of her therapists is encouraging her to "stay with" tasks rather than quickly moving from task to task. Good luck with that :)! Miss Bridget has a mind of her own and doesn't want to do things she, well, doesn't want to do. Not a surprise, there.

Her IEP, for the most part, is filled with things that Bridget has shown an interest in doing, or skills we believe are "functional skills" well within her reach which would be important to her participation in the classroom. Our goal was for most--if not all--of the items on her IEP to be things which would help her to be happier, healthier, or more independent (not just check marks on a standard development chart).

A few of the items on Bridget's IEP: learning classroom routines (with the help of visual supports and cues, such as picture cards and a visual clock), refining grasping skills necessary for writing down the road, saying her name, increasing the clarity of her speech (and increasing her spoken vocabulary), and encouraging large motor progress so she is able to better access and take full advantage of all that is offered on the playground and in the classroom.

Bridget's day is filled with all the typical things you usually find at preschool: reading, singing, pretend play, large motor play, arts and crafts, snack, etc. Here's a quick rundown of what her therapists are working on additionally:

OT - Bridget loves music, so her OT is incorporating songs and finger plays into their time together to help isolated finger movements and bilateral skills (a preparation for other fine motor work). She is also working with lacing shapes, puzzles, tongs, handwriting--lines and curves & imitating strokes (in preparation for writing the "B" in her name), and playing with pegs in therapy putty.

PT - Bridget's PT took a job with the local school system over the summer, so she basically moved with us from EI to preschool. The continuity has been awesome. She is working with Bridget on balance and core control (trampoline, swing, stepping on and off a mat, going up and down a ramp, standing on a beam, and going over obstacles & up and down stairs). They have also been working toward running ("fast feet"--which is hilarious to watch) and jumping.

Speech - Our SLP is working on consonant-vowel combinations with Bridget in an effort to help her enunciate sounds and words. She is also helping Bridget say the names of classmates and encouraging her to use two (or more) word requests and phrases ("Where Katie?" or "More tea.") As with the other therapies, they do most of their "work" through play, including reading and pointing to objects in Bridget's favorite books, singing her favorite songs, and sharpening speech skills through pretending (tea parties and pretending to talk on the phone, among other things).

Bridget loves the one-on-one attention from her teachers and therapists when she gets it. "Therapy" is often "playing" in small groups with classmates (typical peer models), so she is never out of the loop for long.

I am happy to answer any further questions for parents with preschool in the near future. Leave a comment here so others can read the questions and responses :).

Look Who's Blogging

Like most three-year-olds, Bridget is interested in doing whatever she sees the rest of us doing. She loves telephones of all kinds (cell phones, rotary dial phones, cordless phones, etc.) loves iPods, and loves computers.

Here is my little helper...blogging (okay, she's just checking out her own blog). Notice that the mouse is on the left side of the computer. It is usually on the right side, but she's left-handed and moves it. (She has also been known to hit random keys--in her mind, she's typing--and has put dates in my Microsoft Outlook calendar. Reminders will pop up on my screen from time to time that look like this: GDHLSKJOIDHEWG{LSHOEJHLk 10:00 a.m.)

More on preschool tomorrow, look for posts on feeding and speech later this week.

Look Who's Blogging

Like most three-year-olds, Bridget is interested in doing whatever she sees the rest of us doing. She loves telephones of all kinds (cell phones, rotary dial phones, cordless phones, etc.) loves iPods, and loves computers.

Here is my little helper...blogging (okay, she's just checking out her own blog). Notice that the mouse is on the left side of the computer. It is usually on the right side, but she's left-handed and moves it. (She has also been known to hit random keys--in her mind, she's typing--and has put dates in my Microsoft Outlook calendar. Reminders will pop up on my screen from time to time that look like this: GDHLSKJOIDHEWG{LSHOEJHLk 10:00 a.m.)

More on preschool tomorrow, look for posts on feeding and speech later this week.

Preschool Update - October

Bridget has been in preschool for a month. If I didn't know better, I'd think it had been at least a year. She gets her backpack ("pack pack") on in the morning (she grabs it and brings it to me). She gets her shoes and stands by the front door. She says "BYE!" and blows kisses. This is all at least 20 minutes before her bus comes :).

The funny thing is that we didn't start any of our other kids in preschool until they were almost four. Bridget was barely three when she began. She is going three hours a day, four days a week--where the other kids went two and 1/2 hours, two days a week at about her age. I wasn't sure she was ready, but it turns out that I wasn't ready. She is thriving. She's such a big girl and she is loving school.

She rides the bus, walks into school by herself & hangs up her book bag. She is learning (and learning to say) the names of her classmates, enjoying free play at school (especially in the housekeeping area--not a surprise), and is energetic when she gets home. (I remember that Kyle, especially, was often asleep in the corner when I came to pick him up during his first year of preschool.)

I wait for Bridget's bus to arrive every day after school, and as it pulls around the corner toward our house, I think about how much I have missed my little girl. Her sweet face in the window is priceless. I can see her mouthing "MOM!" as soon as the bus stops at the end of our driveway. Bridget jumps into my arms, turns to wave good-bye to the bus driver and bus aide, then takes my hand and bounds up the driveway, blowing me kisses and telling me along the way if she wants me to stop, or jump :) or whatever else. She has become a bit of a D-I-V-A, telling people where to walk, how fast to walk, when to "STOP" and when to "GO". (She must be picking this up in school, but I don't know all the details yet. I am sure I will hear about it, though.)

When we come inside, she kicks off her shoes and puts her book bag on the bench in our mudroom. She immediately heads to the powder room to grab the step stool and wash her hands, then asks to "EAT! EAT! EAT!". After lunch, she wants to watch an episode of Dora or Max & Ruby, followed by a nap. Sounds like the life, doesn't it?

More on preschool tomorrow...

Preschool Update - October

Bridget has been in preschool for a month. If I didn't know better, I'd think it had been at least a year. She gets her backpack ("pack pack") on in the morning (she grabs it and brings it to me). She gets her shoes and stands by the front door. She says "BYE!" and blows kisses. This is all at least 20 minutes before her bus comes :).

The funny thing is that we didn't start any of our other kids in preschool until they were almost four. Bridget was barely three when she began. She is going three hours a day, four days a week--where the other kids went two and 1/2 hours, two days a week at about her age. I wasn't sure she was ready, but it turns out that I wasn't ready. She is thriving. She's such a big girl and she is loving school.

She rides the bus, walks into school by herself & hangs up her book bag. She is learning (and learning to say) the names of her classmates, enjoying free play at school (especially in the housekeeping area--not a surprise), and is energetic when she gets home. (I remember that Kyle, especially, was often asleep in the corner when I came to pick him up during his first year of preschool.)

I wait for Bridget's bus to arrive every day after school, and as it pulls around the corner toward our house, I think about how much I have missed my little girl. Her sweet face in the window is priceless. I can see her mouthing "MOM!" as soon as the bus stops at the end of our driveway. Bridget jumps into my arms, turns to wave good-bye to the bus driver and bus aide, then takes my hand and bounds up the driveway, blowing me kisses and telling me along the way if she wants me to stop, or jump :) or whatever else. She has become a bit of a D-I-V-A, telling people where to walk, how fast to walk, when to "STOP" and when to "GO". (She must be picking this up in school, but I don't know all the details yet. I am sure I will hear about it, though.)

When we come inside, she kicks off her shoes and puts her book bag on the bench in our mudroom. She immediately heads to the powder room to grab the step stool and wash her hands, then asks to "EAT! EAT! EAT!". After lunch, she wants to watch an episode of Dora or Max & Ruby, followed by a nap. Sounds like the life, doesn't it?

More on preschool tomorrow...

Say Cheese!

On school picture day, we tucked a completed LifeTouch envelope in Bridget's home-school folder, then into her butterfly backpack (which she now loves...how quickly the tides turn when you're three).

Chris and I giggled all morning about how the photographer was going to get her to sit and have her picture taken. Beyond that, we belly-laughed about what on earth we would find when we got to see the finished results. I envisioned half of Bridget in the frame (half out...as in I'm outta here!), while Chris thought we might see the back of her head or her looking down, pouting.

We laughed even harder when we saw the above photo, which is the real McCoy, the finished product (and, as I'm sure you can all tell, a photograph of the actual photograph). I have no idea how the photographer got her to break into this huge grin, but it sure looks like she is having fun. This smile, the one with the half-moon eyes, is so Bridget. The picture is pretty darn cute, even if I secretly loathe LifeTouch.

If you're interested in getting an update on how preschool is going for Miss Bridget, check back this weekend. Next week, I'll be addressing speech delays and feeding issues. Fun stuff, so stay tuned...

Describing Bridget - by sister Sara (14)

Three words to describe Bridget: "spunky, happy (most of the time!), amazing."

If I were going to describe my little sister to someone in a few brief words, Down syndrome wouldn't be on the list. It is part of her, but it is not essential to who she is. What I would say is that Bridget is my three year old baby sister (I still like to call her my baby sister, but the truth is that she is really growing up!). Sometimes she has an attitude, and she can also be very sweet :). She is smart and funny. Bridget is ten years younger than I am, so she does not really know if I am having a hard time with friends, school, or whatever. But no matter what, she can always brighten my day and make me happy. I love her so much!!

Describing Bridget - by sister Sara (14)

Three words to describe Bridget: "spunky, happy (most of the time!), amazing."

If I were going to describe my little sister to someone in a few brief words, Down syndrome wouldn't be on the list. It is part of her, but it is not essential to who she is. What I would say is that Bridget is my three year old baby sister (I still like to call her my baby sister, but the truth is that she is really growing up!). Sometimes she has an attitude, and she can also be very sweet :). She is smart and funny. Bridget is ten years younger than I am, so she does not really know if I am having a hard time with friends, school, or whatever. But no matter what, she can always brighten my day and make me happy. I love her so much!!

Describing Bridget - by brother Kyle (12 1/2)

Three words to describe Bridget: "outgoing, curious, goofy."

When I think of Bridget I think of someone who is adorable, funny, and my sister. I do not see a person who is disabled. Bridget has shown my family and me what kids with disabilities are like (they are like the rest of us), and now many other people understand too. Bridget is growing up quickly. She is always changing and discovering new things. I am glad that Bridget is with us. I would never wish that she was not my little sister. She is awesome.

Describing Bridget - by brother Kyle (12 1/2)

Three words to describe Bridget: "outgoing, curious, goofy."

When I think of Bridget I think of someone who is adorable, funny, and my sister. I do not see a person who is disabled. Bridget has shown my family and me what kids with disabilities are like (they are like the rest of us), and now many other people understand too. Bridget is growing up quickly. She is always changing and discovering new things. I am glad that Bridget is with us. I would never wish that she was not my little sister. She is awesome.

Describing Bridget - by brother Brian (10)

Three words to describe Bridget: "hilarious, cute, forgiving (sort of)."

Bridget is doing great in school. She says HI!, BOOM, poop, mom!mom!mom! and lots of other stuff. It is really cute when she says BOOM because she wants you to give her knuckels. Oh, she also is going potty and we all clap and say YAY! I am really happy that Bridget is in my life because she is funny, cute, and loving. She is pretty much perfect.

Describing Bridget - by brother Brian (10)

Three words to describe Bridget: "hilarious, cute, forgiving (sort of)."

Bridget is doing great in school. She says HI!, BOOM, poop, mom!mom!mom! and lots of other stuff. It is really cute when she says BOOM because she wants you to give her knuckels. Oh, she also is going potty and we all clap and say YAY! I am really happy that Bridget is in my life because she is funny, cute, and loving. She is pretty much perfect.

Describing Bridget - by sister Emmy (7)

Three words to describe Bridget: "beautiful, cute, loving."

Bridget likes to talk on the pfone. she likes to give kissis and hugs when pepol are sad. she is doing really good in preschool. she likes to read books with me. she is a good roommate. I am glad that she is my sister. she is the butterfly of our lives she is pirfict loving and buteuful. she is very nice to other pepol and no other sister cood reeplas her.

Describing Bridget - by sister Emmy (7)

Three words to describe Bridget: "beautiful, cute, loving."

Bridget likes to talk on the pfone. she likes to give kissis and hugs when pepol are sad. she is doing really good in preschool. she likes to read books with me. she is a good roommate. I am glad that she is my sister. she is the butterfly of our lives she is pirfict loving and buteuful. she is very nice to other pepol and no other sister cood reeplas her.

Bridget - A Beautiful Life

Welcome to anyone who is just finding us through the Respect Life materials!

I was contacted earlier this year by the United States Conference of Catholic Bishops for our permission to use Bridget's image (specifically, this picture I took of Chris and Bridget one relaxed and happy morning in the spring of 2008) in the Respect Life materials for this year. For those of Catholic faith, this--the first Sunday in October--is Respect Life Sunday.

Though we are not Catholic--and don't discuss our religious or political beliefs here--we do feel that Life itself is precious and that every life has value.

I've written here about my own philosophy on the inherent goodness in the world, and in people, and about my feelings on gratitude and "reverence". I don't discuss the moral and ethical considerations of prenatal testing or termination, and I try to stay out of debates about those issues. Bridget's Light is meant to educate, comfort and inspire. It is where I advocate for Bridget and for other people and families living with Down syndrome.

I will say openly that we did not have prenatal testing with any of our children because we felt we were prepared to handle and embrace whatever came our way. We feel that Life is a gift, and that Bridget is a gift.

We see the merit in many different religions and spiritual (or personal) belief systems, and we are honored that Bridget's picture was selected to represent the value, worth and dignity of all people.

Today, as every other day, we are celebrating Bridget and celebrating Life. We are grateful for Bridget--for her smile, for her presence in our lives, for everything about her.

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Coming up this week on Bridget's Light: Describing Bridget--Thoughts from Her Siblings