Thursday, April 23, 2009

Bridget Update - 33 Months









Each month, I write an update for Bridget's Early Intervention team to let them know what skills she has acquired and what we are working on with her at home. We use the write-up as a starting point for our meetings. The updates have also been a great way to document Bridget's development and progress. Here's the latest one:

___________________________________________



Bridget is walking well now. She’s making significant progress (all areas) and is attempting more spoken words and enjoying independent play. She loves purses, phones, sunglasses, bubbles and tea parties. She’s discovered that she can climb (out of her crib and elsewhere!)



What’s new

- Even more “jabbering” with new sounds like “ka” and “tsss”. New words: “eat eat eat!”, “cup”, “yogur” or “gogur” (yogurt), says “dahl” while signing “ball”, says “sauce” while signing apple (how about that!), “day day” (birthday). Bridget often points to her mouth when she says a word, which is what I do when I want her to “watch my mouth”. New signs: beach, dolphin, potty

- Walking (everywhere!). Walks around house without falling, is starting to pay attention to obstacles. Can walk on grass. Is beginning to “kick” (which she also tries to say). She can walk and drink from her cup at the same time :)

- Takes off shirt, pants, socks, shoes

- Recognizes many body parts: head, hair, eyes, mouth, lips, teeth, tongue, nose, shoulders, arms, hands, fingers, feet, toes. Says “heh” (head), “hair”, “tee” (teeth), “no” (nose), “toe” (toes)

- Sits on the potty and says “tssss” (then gets up and claps). We are just beginning potty training with her :)

- Blows kisses to say “I love you”

- Can now put sunglasses on the “right way” and adjusts them, also wears them on her head

- Helps mommy get ready and knows what each thing on my vanity is for (i.e., eyedrops, lotion, lipgloss, etc.)

- Has learned how to fake sneeze (and it sounds real…"ah choo!")

- Is using a spoon fairly well to eat applesauce, oatmeal, yogurt



We are

- Working on walking and balance (marching—which right now is stepping back and forth—, tiptoes, kicking, “up & down”)

- Doing lots of oral-motor exercises: Blowing feathers, blowing bubbles in milk or in the bath, sipping through straws, licking frosting off lips, etc.

- Beginning to transition from sippy cups to drinking from a straw or open cup

- Still working on chewing and tongue lateralization. We continue to focus on independent eating strategies. We are encouraging Bridget to use a fork and spoon. She does not want to use a fork and throws it as soon as we give it to her…UGH!

- Working on taking turns, making choices

- Singing, dancing, reading, pretending with Bridget

- Playing outside

- Fine motor: drawing with crayons and with her Aquadoodle, playing with play-doh, pushing buttons on toys

- “Playing with” puzzles

- Having Bridget point things out in books

- Singing, reading, talking about animals and the sounds they make

- Counting 1-10 (books, flashcards, manipulatives)

- Singing and word plays: Head, Shoulders, Knees and Toes, You are my Sunshine, If You’re Happy and You Know it, Pat-a-cake

- Using some signs with her, and also still really encouraging Bridget to speak—especially with a mirror for reinforcement and through singing (she will repeat sounds when we sing them)





*I found a few items recently that others might also be looking for:

tiny underwear at TheChildren's Place and

these take-n-toss flip lid cups (which I got at Target, and should help with the transition to drinking from a straw

or open cup--you can use them either way).



Bridget Update - 33 Months





Each month, I write an update for Bridget's Early Intervention team to let them know what skills she has acquired and what we are working on with her at home. We use the write-up as a starting point for our meetings. The updates have also been a great way to document Bridget's development and progress. Here's the latest one:

___________________________________________


Bridget is walking well now. She’s making significant progress (all areas) and is attempting more spoken words and enjoying independent play. She loves purses, phones, sunglasses, bubbles and tea parties. She’s discovered that she can climb (out of her crib and elsewhere!)


What’s new

- Even more “jabbering” with new sounds like “ka” and “tsss”. New words: “eat eat eat!”, “cup”, “yogur” or “gogur” (yogurt), says “dahl” while signing “ball”, says “sauce” while signing apple (how about that!), “day day” (birthday). Bridget often points to her mouth when she says a word, which is what I do when I want her to “watch my mouth”. New signs: beach, dolphin, potty

- Walking (everywhere!). Walks around house without falling, is starting to pay attention to obstacles. Can walk on grass. Is beginning to “kick” (which she also tries to say). She can walk and drink from her cup at the same time :)

- Takes off shirt, pants, socks, shoes

- Recognizes many body parts: head, hair, eyes, mouth, lips, teeth, tongue, nose, shoulders, arms, hands, fingers, feet, toes. Says “heh” (head), “hair”, “tee” (teeth), “no” (nose), “toe” (toes)

- Sits on the potty and says “tssss” (then gets up and claps). We are just beginning potty training with her :)

- Blows kisses to say “I love you”

- Can now put sunglasses on the “right way” and adjusts them, also wears them on her head

- Helps mommy get ready and knows what each thing on my vanity is for (i.e., eyedrops, lotion, lipgloss, etc.)

- Has learned how to fake sneeze (and it sounds real…"ah choo!")

- Is using a spoon fairly well to eat applesauce, oatmeal, yogurt


We are

- Working on walking and balance (marching—which right now is stepping back and forth—, tiptoes, kicking, “up & down”)

- Doing lots of oral-motor exercises: Blowing feathers, blowing bubbles in milk or in the bath, sipping through straws, licking frosting off lips, etc.

- Beginning to transition from sippy cups to drinking from a straw or open cup

- Still working on chewing and tongue lateralization. We continue to focus on independent eating strategies. We are encouraging Bridget to use a fork and spoon. She does not want to use a fork and throws it as soon as we give it to her…UGH!

- Working on taking turns, making choices

- Singing, dancing, reading, pretending with Bridget

- Playing outside

- Fine motor: drawing with crayons and with her Aquadoodle, playing with play-doh, pushing buttons on toys

- “Playing with” puzzles

- Having Bridget point things out in books

- Singing, reading, talking about animals and the sounds they make

- Counting 1-10 (books, flashcards, manipulatives)

- Singing and word plays: Head, Shoulders, Knees and Toes, You are my Sunshine, If You’re Happy and You Know it, Pat-a-cake

- Using some signs with her, and also still really encouraging Bridget to speak—especially with a mirror for reinforcement and through singing (she will repeat sounds when we sing them)



*I found a few items recently that others might also be looking for:

tiny underwear at TheChildren's Place and

these take-n-toss flip lid cups (which I got at Target, and should help with the transition to drinking from a straw

or open cup--you can use them either way).


Wednesday, April 22, 2009

Ds Diagnosis--What to Say to Others

As parents, it is tough enough to navigate our own feelings when our child is diagnosed with Down syndrome, let alone manage other people's reactions. We've all wondered at some point just how and when we should reveal our child's diagnosis to others.

I remember thinking, "Am I
required to tell ____ that Bridget was born with Down syndrome?" (Sometimes it was a friend I hadn't seen in a while, sometimes it was a stranger in the grocery store or an acquaintance at the dance studio or the school. I figured most people who knew even vaguely of our family would know, as word of such things seems to spread like wildfire.)

I also wasn't sure
what to say. And then there were the many things people said to me that threw me for a loop.

I decided that I would tell people if I felt like it, and it made sense. If I didn't feel like explaining, I just didn't say anything about her diagnosis. And I made a promise to myself that I would not feel badly about that. In other words, I started to cut myself some slack. I know I am a great advocate for Bridget, and I am her translator in many ways. I love her and believe in her wholeheartedly, and will speak up when it makes sense to do so--but I don't always have to take on the world. (Some of our best advocacy work is just being out there, providing one example of a loving family living a happy and full life which includes Down syndrome.)

People make insensitive comments so often without even realizing it.
Laurie wrote about it here. She asked for suggestions on what to say when this happens, and I commented on her post:

When Bridget was a baby, I was still trying to absorb her diagnosis and figure out how to tell others about it. We all need to find things to say that fit our personality and also the situation.


I used to just stand there--a little stunned--when someone made a comment that hurt (you can't always see it coming). You replay the situation in your head for days, trying to figure out what you should have said.


I now have all sorts of statements in my "bag".


I am usually straightforward and positive, and I remind myself that each of these situations is a chance for me to advocate for Bridget and for other people who have a diagnosis of Down syndrome (really, for people with a diagnosis of any type).

It is important for all of us (parents and family members) to be well versed on the basics (why Ds occurs, the range of delays associated with the diagnosis, physical features, common health issues, improvements in medical care for people with Ds, current terminology, new opportunities & advancements, etc.) People will ask about those things. Most people will not have personal experience related to Down syndrome. Your child might be the first person they've encountered with the diagnosis.


Here are some ideas:


If someone seems to be wondering whether she has a diagnosis, I'll just come right out with it: "Bridget has Down syndrome" or "She is developmentally delayed". In case they can't see for themselves, I always follow with: "She is awesome".

I often ask the person if they have any questions about her diagnosis. It takes some of the stigma away when we don't make excuses or apologies. (She is who she is, and she is amazing.)


When people comment about physical features or health issues ("she doesn't look like she has Down syndrome" or "she is so high-functioning...she must not have a severe case"), I say, "There is no such thing as a mild case of Down syndrome. You either have it or you don't. Some people with Down syndrome have more significant delays than others, and some have more serious health concerns. As with all people, there is a huge range in physical characteristics, health and abilities in people with Down syndrome."


A shorter version: "That is a stereotype. People with Down syndrome, like everyone else, have a range of abilities and challenges" or
"Everyone has strengths and challenges. She does, too."

I also say things like: "We know much more about Down syndrome today than was known even 20 years ago. People with Ds are capable of so much more than ever thought possible. I'd never want to dictate to any of my children what someone else thinks they can't do. Only Bridget can tell us how far she will go and what she will accomplish."

I will always highlight her unique personality, her abilities and potential, and the fact that she is a child--a person with a diagnosis--not the diagnosis itself.


Feel free to use any of these statements (in whole, or pieces and parts).

Does anyone else have input? How do you tell someone about your child's diagnosis for the first time? What do you say when someone casually asks about some facet of your child having Ds? Do you have a quick comeback when someone makes an insensitive or ignorant statement? Do you have comments "in the bag" for just such an occasion?

Please comment here to add more ideas...

*Coming soon...Talking to Children about Down Syndrome

Ds Diagnosis--What to Say to Others

As parents, it is tough enough to navigate our own feelings when our child is diagnosed with Down syndrome, let alone manage other people's reactions. We've all wondered at some point just how and when we should reveal our child's diagnosis to others.

I remember thinking, "Am I
required to tell ____ that Bridget was born with Down syndrome?" (Sometimes it was a friend I hadn't seen in a while, sometimes it was a stranger in the grocery store or an acquaintance at the dance studio or the school. I figured most people who knew even vaguely of our family would know, as word of such things seems to spread like wildfire.)

I also wasn't sure
what to say. And then there were the many things people said to me that threw me for a loop.

I decided that I would tell people if I felt like it, and it made sense. If I didn't feel like explaining, I just didn't say anything about her diagnosis. And I made a promise to myself that I would not feel badly about that. In other words, I started to cut myself some slack. I know I am a great advocate for Bridget, and I am her translator in many ways. I love her and believe in her wholeheartedly, and will speak up when it makes sense to do so--but I don't always have to take on the world. (Some of our best advocacy work is just being out there, providing one example of a loving family living a happy and full life which includes Down syndrome.)

People make insensitive comments so often without even realizing it.
Laurie wrote about it here. She asked for suggestions on what to say when this happens, and I commented on her post:

When Bridget was a baby, I was still trying to absorb her diagnosis and figure out how to tell others about it. We all need to find things to say that fit our personality and also the situation.


I used to just stand there--a little stunned--when someone made a comment that hurt (you can't always see it coming). You replay the situation in your head for days, trying to figure out what you should have said.


I now have all sorts of statements in my "bag".


I am usually straightforward and positive, and I remind myself that each of these situations is a chance for me to advocate for Bridget and for other people who have a diagnosis of Down syndrome (really, for people with a diagnosis of any type).

It is important for all of us (parents and family members) to be well versed on the basics (why Ds occurs, the range of delays associated with the diagnosis, physical features, common health issues, improvements in medical care for people with Ds, current terminology, new opportunities & advancements, etc.) People will ask about those things. Most people will not have personal experience related to Down syndrome. Your child might be the first person they've encountered with the diagnosis.


Here are some ideas:


If someone seems to be wondering whether she has a diagnosis, I'll just come right out with it: "Bridget has Down syndrome" or "She is developmentally delayed". In case they can't see for themselves, I always follow with: "She is awesome".

I often ask the person if they have any questions about her diagnosis. It takes some of the stigma away when we don't make excuses or apologies. (She is who she is, and she is amazing.)


When people comment about physical features or health issues ("she doesn't look like she has Down syndrome" or "she is so high-functioning...she must not have a severe case"), I say, "There is no such thing as a mild case of Down syndrome. You either have it or you don't. Some people with Down syndrome have more significant delays than others, and some have more serious health concerns. As with all people, there is a huge range in physical characteristics, health and abilities in people with Down syndrome."


A shorter version: "That is a stereotype. People with Down syndrome, like everyone else, have a range of abilities and challenges" or
"Everyone has strengths and challenges. She does, too."

I also say things like: "We know much more about Down syndrome today than was known even 20 years ago. People with Ds are capable of so much more than ever thought possible. I'd never want to dictate to any of my children what someone else thinks they can't do. Only Bridget can tell us how far she will go and what she will accomplish."

I will always highlight her unique personality, her abilities and potential, and the fact that she is a child--a person with a diagnosis--not the diagnosis itself.


Feel free to use any of these statements (in whole, or pieces and parts).

Does anyone else have input? How do you tell someone about your child's diagnosis for the first time? What do you say when someone casually asks about some facet of your child having Ds? Do you have a quick comeback when someone makes an insensitive or ignorant statement? Do you have comments "in the bag" for just such an occasion?

Please comment here to add more ideas...

*Coming soon...Talking to Children about Down Syndrome

Tuesday, April 21, 2009

New Diagnosis--What to Say to Parents

When Bridget was a baby, someone actually asked me if I took my prenatal vitamins when I was pregnant with her (suggesting that Down syndrome was somehow related to vitamin intake, or worse, and how it came off to me--that her having Down syndrome was somehow my fault).

We all have long lists of WHAT NOT TO SAY to an expectant parent or new parent of a child with Down syndrome.

Cheryl at Ruby's Life recently asked for input on what to say when a parent receives a diagnosis of Down syndrome. What would we have wanted to hear?

As it is with all people, there is a large variation in people with Down syndrome in terms of health, ability, personality, etc.

All people (those with and without a specific diagnosis) experience some degree of challenge, and it is not possible to determine in advance how significant those challenges will be in a person's life. There is no telling what an individual will accomplish in his or her lifetime--especially if that person is loved and valued and given every opportunity to succeed.

Yet, many times a parent is given a dim view of the life ahead for their child when a diagnosis is first discovered. Many medical professionals seem clinical and removed when discussing a child's diagnosis, though some are very sensitive and seem to understand the weight of the information.

I've been thinking about what medical professionals and and others say and how it impacts us (parents). Lila's mom posted this recently:

I remember asking the geneticist when we would know how much our baby would be able to accomplish in her life- she just smiled and said "At the end of her life, you'll know. Give her every opportunity to accomplish as much as she can and you'll be amazed at what she can do."

This is honest, and doesn't promise anything in particular. It is such a hopeful, positive statement--one that I think any expectant parent would want to hear.

Does anyone else have thoughts on this subject?

New Diagnosis--What to Say to Parents

When Bridget was a baby, someone actually asked me if I took my prenatal vitamins when I was pregnant with her (suggesting that Down syndrome was somehow related to vitamin intake, or worse, and how it came off to me--that her having Down syndrome was somehow my fault).

We all have long lists of WHAT NOT TO SAY to an expectant parent or new parent of a child with Down syndrome.

Cheryl at Ruby's Life recently asked for input on what to say when a parent receives a diagnosis of Down syndrome. What would we have wanted to hear?

As it is with all people, there is a large variation in people with Down syndrome in terms of health, ability, personality, etc.

All people (those with and without a specific diagnosis) experience some degree of challenge, and it is not possible to determine in advance how significant those challenges will be in a person's life. There is no telling what an individual will accomplish in his or her lifetime--especially if that person is loved and valued and given every opportunity to succeed.

Yet, many times a parent is given a dim view of the life ahead for their child when a diagnosis is first discovered. Many medical professionals seem clinical and removed when discussing a child's diagnosis, though some are very sensitive and seem to understand the weight of the information.

I've been thinking about what medical professionals and and others say and how it impacts us (parents). Lila's mom posted this recently:

I remember asking the geneticist when we would know how much our baby would be able to accomplish in her life- she just smiled and said "At the end of her life, you'll know. Give her every opportunity to accomplish as much as she can and you'll be amazed at what she can do."

This is honest, and doesn't promise anything in particular. It is such a hopeful, positive statement--one that I think any expectant parent would want to hear.

Does anyone else have thoughts on this subject?

Monday, April 20, 2009

Learning About Myself

This post is not what you might expect. Yes, I have learned significant things about myself in being Bridget's mom and getting to experience life with her.

I've also learned some little details about myself that I didn't see before my little girl began playing them back to me, repeating what she sees me doing and saying.


Apparently, I say "yep" all the time (thank goodness it's not #@!*). When Bridget first started pretending to talk on the phone, she would answer, "Hehwo?" then throw her head back and laugh. She'd listen intently for a minute and respond, "yeah....yep". I thought,
I wonder where she got that? Do I laugh like that? I'm sure I don't say "yep". But according to Bridget and everyone else who knows me...I do. (Now that she's walking everywhere, she also walks and talks while on the phone--which I definitely do.)

I also didn't realize that I often walk around with a flour sack dish towel slung over my shoulder (pretty). Bridget noticed. And she does it, too.


When she finds one of my hair pins, she puts it between her teeth, pulls her hair back with both hands and then takes one hand off to retrieve the pin and to fasten her hair up off her neck. I honestly had no idea that it was my routine. My family says they see me do this all the time, but if you asked me last year whether or not I put my hair up this way, I'd have said, "maybe?"


So Bridget has obviously picked up on some of my mannerisms and habits. She has a distinct personality and many aspects of it are pure Bridget, but it is also scary how much she is like I was at her age.
Some of it must be in the genes.

My parents say I "was busy" and "kept them on their toes" when I was little. That's a nice way of saying I gave them a run for their money. I talked. And gestured. A lot. When I was two and wanted my mom's attention while she was talking to the other moms, I would turn her face to mine just when she was mid-sentence and say, "Don't bisit with the ladies!" I made goofy faces, and lots of them. I always used my hands when I talked and bounced rather than walked. I danced and danced and danced...and loved to sing into the microphone on my dad's tape recorder.
Words my parents use to describe me as a toddler: expressive, determined, aware, loved, secure.

And thirty-some years later, here comes Miss Bridget, who I'd describe in much the same way. She climbs into my lap, takes my face in her hands and says, "Mom! Mom!" when I am watching t.v., trying to talk to Chris, or having a meeting with her Early Intervention team. She's imitated singing since she was about five months old (she is our American Idol fan), grooves whenever she hears music (complete with shoulder shimmy), and makes more faces than anyone I know. She gestures wildly while she "talks" (it's more like jabbering at this point, and she jabbers. A lot.) She is busy, busy, busy, and keeps me busy, busy, busy. If I had a dime for every time my mom giggles when I tell her how Bridget is wearing me out, I'd be a rich lady. She says I'm getting paid back :). I say...in spades!


I know, I'd better watch what I say and do. Bridget is watching...

Learning About Myself

This post is not what you might expect. Yes, I have learned significant things about myself in being Bridget's mom and getting to experience life with her.

I've also learned some little details about myself that I didn't see before my little girl began playing them back to me, repeating what she sees me doing and saying.


Apparently, I say "yep" all the time (thank goodness it's not #@!*). When Bridget first started pretending to talk on the phone, she would answer, "Hehwo?" then throw her head back and laugh. She'd listen intently for a minute and respond, "yeah....yep". I thought,
I wonder where she got that? Do I laugh like that? I'm sure I don't say "yep". But according to Bridget and everyone else who knows me...I do. (Now that she's walking everywhere, she also walks and talks while on the phone--which I definitely do.)

I also didn't realize that I often walk around with a flour sack dish towel slung over my shoulder (pretty). Bridget noticed. And she does it, too.


When she finds one of my hair pins, she puts it between her teeth, pulls her hair back with both hands and then takes one hand off to retrieve the pin and to fasten her hair up off her neck. I honestly had no idea that it was my routine. My family says they see me do this all the time, but if you asked me last year whether or not I put my hair up this way, I'd have said, "maybe?"


So Bridget has obviously picked up on some of my mannerisms and habits. She has a distinct personality and many aspects of it are pure Bridget, but it is also scary how much she is like I was at her age.
Some of it must be in the genes.

My parents say I "was busy" and "kept them on their toes" when I was little. That's a nice way of saying I gave them a run for their money. I talked. And gestured. A lot. When I was two and wanted my mom's attention while she was talking to the other moms, I would turn her face to mine just when she was mid-sentence and say, "Don't bisit with the ladies!" I made goofy faces, and lots of them. I always used my hands when I talked and bounced rather than walked. I danced and danced and danced...and loved to sing into the microphone on my dad's tape recorder.
Words my parents use to describe me as a toddler: expressive, determined, aware, loved, secure.

And thirty-some years later, here comes Miss Bridget, who I'd describe in much the same way. She climbs into my lap, takes my face in her hands and says, "Mom! Mom!" when I am watching t.v., trying to talk to Chris, or having a meeting with her Early Intervention team. She's imitated singing since she was about five months old (she is our American Idol fan), grooves whenever she hears music (complete with shoulder shimmy), and makes more faces than anyone I know. She gestures wildly while she "talks" (it's more like jabbering at this point, and she jabbers. A lot.) She is busy, busy, busy, and keeps me busy, busy, busy. If I had a dime for every time my mom giggles when I tell her how Bridget is wearing me out, I'd be a rich lady. She says I'm getting paid back :). I say...in spades!


I know, I'd better watch what I say and do. Bridget is watching...

Tuesday, April 14, 2009

Safety Tent Salvation

Chris and I were talking in our room the other day just after I put Bridget down for her nap. Her baby monitor was on, and I could hear her quietly talking and playing...then suddenly a loud BOOM came over the monitor, followed by silence.

I knew exactly what had happened, although this was a first. She was screaming as I came flying down the hall, around the corner and into her bedroom to find her laying face-first on the floor with a bloody lip and the texture of her rug tattooed on her forehead.


She's been trying to lift her foot onto the crib rail for quite some time now, but she's so short that her toes barely reach. Of our five children, no one else has climbed (or fallen) out of the crib, although all were certainly capable of either at one point or another. None of our other children ever attempted to climb over the back of the family room couch, out of the bathtub, or over the highchair tray. But Bridget has--and does.


I found her by the front door recently on her tiptoes reaching for the doorknob with a purse over her shoulder & sunglasses on her head. Hmmn. And she used to play happily in her pack-and-play while I made dinner, or worked on my computer, or cleaned our first floor. Once she realized she could easily make it over the rail and let herself out, my peaceful cooking, writing and cleaning ended. I now spend most of the day tailing her and trying to keep her safe.


When Bridget was a baby, more than one person commented on how lucky I was that she'd be an easy and agreeable youngest child. Bridget must have missed the memo on that one :). She has very definite ideas and knows just how to carry them out. She's flexible and strong and determined. And she does not miss a trick.


This is my two-and-a-half-year-old child whose pretend sneeze fools everyone, who knows exactly how to use an eyelash curler, who doesn't really talk but has figured out about 15 different ways to tell (or show) us she's hungry.


This is all to say that Miss Smarty-pants has a new safety tent over her crib, and I will be able to sleep tonight.


Now if they only made one for the family room couch, the bathtub, the highchair...


Safety Tent Salvation

Chris and I were talking in our room the other day just after I put Bridget down for her nap. Her baby monitor was on, and I could hear her quietly talking and playing...then suddenly a loud BOOM came over the monitor, followed by silence.

I knew exactly what had happened, although this was a first. She was screaming as I came flying down the hall, around the corner and into her bedroom to find her laying face-first on the floor with a bloody lip and the texture of her rug tattooed on her forehead.


She's been trying to lift her foot onto the crib rail for quite some time now, but she's so short that her toes barely reach. Of our five children, no one else has climbed (or fallen) out of the crib, although all were certainly capable of either at one point or another. None of our other children ever attempted to climb over the back of the family room couch, out of the bathtub, or over the highchair tray. But Bridget has--and does.


I found her by the front door recently on her tiptoes reaching for the doorknob with a purse over her shoulder & sunglasses on her head. Hmmn. And she used to play happily in her pack-and-play while I made dinner, or worked on my computer, or cleaned our first floor. Once she realized she could easily make it over the rail and let herself out, my peaceful cooking, writing and cleaning ended. I now spend most of the day tailing her and trying to keep her safe.


When Bridget was a baby, more than one person commented on how lucky I was that she'd be an easy and agreeable youngest child. Bridget must have missed the memo on that one :). She has very definite ideas and knows just how to carry them out. She's flexible and strong and determined. And she does not miss a trick.


This is my two-and-a-half-year-old child whose pretend sneeze fools everyone, who knows exactly how to use an eyelash curler, who doesn't really talk but has figured out about 15 different ways to tell (or show) us she's hungry.


This is all to say that Miss Smarty-pants has a new safety tent over her crib, and I will be able to sleep tonight.


Now if they only made one for the family room couch, the bathtub, the highchair...


Friday, April 10, 2009

Abilities: Looking *Through* Disability

I'm often asked the question,
How does one really relate and react to a human being
who has a developmental disability?
And the answer to that question
is to look through the disability
and meet the human being.


-a staff member at Camphill California--a community
where adults with developmental disabilities
live, learn and
work together--as heard
in the YouTube video Abilities


Has anyone seen this? Watch it and see what you think. Stick with it. You'll be wondering what is happening at the beginning and where it is going. You might think, "Is this what I can hope for (or should expect) for my child?" There are a few aspects of the video that were tough for me to sort through, and I think most people who watch the clip will have similar thoughts or questions (especially those who have children with a diagnosis).

Please watch, though. Wipe off your own glasses first, and leave your sensitivities behind.
This video is a great start to the many conversations we should be having about abilities and how people with cognitive and developmental delays are perceived.

And the above quote from the video is perfect. I love the expression and intention of "looking through the disability to meet the human being"...


*Camphill California is a community where adults with developmental disabilities live, learn and work together. Residents have a variety of diagnoses including Down syndrome, Fragile X syndrome, autism spectrum disorders, and epilepsy.

To learn more about Camphill California visit: http://www.camphillca.org/

To learn more about The Camphill Movement visit: http://www.camphill.org/

Abilities: Looking *Through* Disability

I'm often asked the question,
How does one really relate and react to a human being
who has a developmental disability?
And the answer to that question
is to look through the disability
and meet the human being.


-a staff member at Camphill California--a community
where adults with developmental disabilities
live, learn and
work together--as heard
in the YouTube video Abilities


Has anyone seen this? Watch it and see what you think. Stick with it. You'll be wondering what is happening at the beginning and where it is going. You might think, "Is this what I can hope for (or should expect) for my child?" There are a few aspects of the video that were tough for me to sort through, and I think most people who watch the clip will have similar thoughts or questions (especially those who have children with a diagnosis).

Please watch, though. Wipe off your own glasses first, and leave your sensitivities behind.
This video is a great start to the many conversations we should be having about abilities and how people with cognitive and developmental delays are perceived.

And the above quote from the video is perfect. I love the expression and intention of "looking through the disability to meet the human being"...


*Camphill California is a community where adults with developmental disabilities live, learn and work together. Residents have a variety of diagnoses including Down syndrome, Fragile X syndrome, autism spectrum disorders, and epilepsy.

To learn more about Camphill California visit: http://www.camphillca.org/

To learn more about The Camphill Movement visit: http://www.camphill.org/

Monday, April 06, 2009

Pathways, Paintings and Memories

So Saturday was my birthday, and Chris surprised me with a new painting (this one, of the pathway) by B.J. Stapen, an artist we met in Santa Barbara, CA, about five years ago. Her paintings are timeless. I can see myself walking down this path, quietly drawing in the power and beauty of the place.

We're not art collectors, and I don't have much on my walls besides family pictures, but I fell in love with B.J.'s work as soon as we saw her booth at the weekly Sunday art show by the beach. (It was the summer of '04, the day we spent in and around Santa Barbara before my surgery.) We now have about a dozen of her paintings, including this newest one. If I could, I'd have one in every room.

I lived in Santa Barbara when I was little and my dad was in graduate school at UCSB. I have vivid memories of running around married student housing barefoot with a huge pack of kids (mostly preschool to early school age). We still keep in touch with several of the families.

None of us had any extra money at the time, so life wasn't extravagant in terms of stuff. But boy was it luxurious in other ways--like an absolutely perfect climate and lush, captivating views everywhere you'd look. For a treat on Saturday mornings, my parents would fill a thermos with coffee, pick up some donuts and take us to the playground at the beach. They say those were some of the best days.

Back to this past Saturday...when everyone was singing Happy Birthday, Bridget began dancing in the middle of the group. She was twirling with her hands high in the air. She was singing her own version of the birthday song and enjoying it. When the song finished, she clapped and yelled, "Day Day! Yea!" What a Day Day it was...

Pathways, Paintings and Memories

So Saturday was my birthday, and Chris surprised me with a new painting (this one, of the pathway) by B.J. Stapen, an artist we met in Santa Barbara, CA, about five years ago. Her paintings are timeless. I can see myself walking down this path, quietly drawing in the power and beauty of the place.

We're not art collectors, and I don't have much on my walls besides family pictures, but I fell in love with B.J.'s work as soon as we saw her booth at the weekly Sunday art show by the beach. (It was the summer of '04, the day we spent in and around Santa Barbara before my surgery.) We now have about a dozen of her paintings, including this newest one. If I could, I'd have one in every room.

I lived in Santa Barbara when I was little and my dad was in graduate school at UCSB. I have vivid memories of running around married student housing barefoot with a huge pack of kids (mostly preschool to early school age). We still keep in touch with several of the families.

None of us had any extra money at the time, so life wasn't extravagant in terms of stuff. But boy was it luxurious in other ways--like an absolutely perfect climate and lush, captivating views everywhere you'd look. For a treat on Saturday mornings, my parents would fill a thermos with coffee, pick up some donuts and take us to the playground at the beach. They say those were some of the best days.

Back to this past Saturday...when everyone was singing Happy Birthday, Bridget began dancing in the middle of the group. She was twirling with her hands high in the air. She was singing her own version of the birthday song and enjoying it. When the song finished, she clapped and yelled, "Day Day! Yea!" What a Day Day it was...

Saturday, April 04, 2009

Left with Love

The world is filled with people that don’t fit the mold of what society says is perfect, smart, worthwhile, etc. Once you have seen the light in someone that the world may reject, you see that light everywhere. The detritus of life falls away and you’re left with love.
- Ann at Three Little Birds from her post yin and yang

And that, my friends, is the straight-up truth.


*From Merriam-Webster:
detritus: noun, pronounced \di-ˈtrī-təs\
1: loose material (as rock fragments or organic particles) that results directly from disintegration 2 a: a product of disintegration, destruction, or wearing away : DEBRIS b: miscellaneous remnants : ODDS AND ENDS- sifting through the detritus of his childhood -Michael Tomasky

Left with Love

The world is filled with people that don’t fit the mold of what society says is perfect, smart, worthwhile, etc. Once you have seen the light in someone that the world may reject, you see that light everywhere. The detritus of life falls away and you’re left with love.
- Ann at Three Little Birds from her post yin and yang

And that, my friends, is the straight-up truth.


*From Merriam-Webster:
detritus: noun, pronounced \di-ˈtrī-təs\
1: loose material (as rock fragments or organic particles) that results directly from disintegration 2 a: a product of disintegration, destruction, or wearing away : DEBRIS b: miscellaneous remnants : ODDS AND ENDS- sifting through the detritus of his childhood -Michael Tomasky