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My time is short these days, and I have been meaning (and wanting) to get here and write about all kinds of things. I have several posts half-done. Does that count :)? Anyway, here are a few things I've been wanting to mention:

- Notice the search bar at the top right under header. Yea! It works. Feel free to try it out :).

- Updates on Bridget:

Preschool is going great. We just got her first progress report, and she is, well, making progress! She has a nice start on many of the goals on her IEP, which I am pleased about, but I am even more happy about how much she is enjoying school (as well as the bus and even her backpack!) and about all the new things she is doing and learning.

We're noticing a "language explosion"--in relative terms, of course. Last night, Bridget said, "I go sleep" and "Where cup? Where my cup!" She has started saying, "Oopsie!" (which has morphed from her very cute "Oop!"), and is now able to say every name in our family (a few of the names are short versions, like "Bri" for Brian...but we know exactly what she is saying, and it is clear to others as well). She is saying "Mom-my" and "Dad-dy" and "Em-my" (when previously she was just saying "Dad", "Mom", and "Em"). She is also beginning to put new words together to describe things, like, "baby sad". Bridget is still signing, but consistently saying words with the sign. She's repeating lots of things they must be doing in school, such as letting us know the type of weather each day at the bus stop (she signs and says "cold" or "rainy" or "sunny"). She will also randomly mention names of her classmates. She is singing along with the ABC's, Itsy-Bitsy Spider, You Are My Sunshine, Twinkle Twinkle Little Star, Happy Birthday and other songs. She says "Hap-py Birth-day" and "Pat-a-cake" very clearly, as well as many other words in the songs. Some parts are less clear to us, but she is attempting the whole song regardless. Wow!

Bridget is very much enjoying all of her siblings (and vice versa). She is absolutely part of the group, just as any other three-year-old would be. She especially likes reading with Emmy, listening to iPods with any of the kids and being in the basement when the boys are shooting baskets (trying to shoot baskets herself).

We ditched the official potty training way back in the summer. Right after we started, it was clear to me that while Bridget was showing many readiness signs, she was not 100% ready to potty train (mainly because she was not able to give me any notice before she needed to go...so even though she was mostly going in the potty, I never felt safe taking her anywhere in underwear). Being able to go when I asked her to was great, but in my mind, that did not constitute being "potty trained". Sometimes, we'd sit in the bathroom for a half-an-hour before she would go. A few days of that was more than enough for both of us, so I decided she was getting ready to train, but was not quite there. And there was really no hurry, other than some arbitrary timeline I'd set to potty train her by the age of three. I decided I'd assess as we go, and begin again when she was able to tell us consistently when she needed to go (and after she'd adjusted to preschool). She has made strides in all areas this past few months. Now it is a matter of me getting serious about it again. When I am able to be consistent and focus on potty training for at least a week, we'll begin again. I am not in a rush, though. It will happen sometime soon :).

I have been thinking of others during this holiday season, and have been giving whenever and wherever I can. Brian's 5th grade class has been talking about Random Acts of Kindness and has been trying to focus on things to do that (1) cost little--or no--money and (2) are unexpected. We've been talking at dinner time about what each of the kids is doing each day to show that they are paying attention to others and how they are spreading love and kindness. We're participating in food drives, adopt-a-family programs and other community-oriented programs, as well as encouraging the kids to give compliments and go out of their way to notice others & opportunities to make someone smile.

(Does anyone remember hearing about the customer who paid for the next person's order in the Starbucks drive-through? There's an idea that could be applied to any drive-through scenario.)

I have been busy fundraising for our local Ds organization, helping friends to locate hard-to-find gifts, and sharing special recipes with family and friends. I'll always answer the call when someone is looking for a certain type of recipe (holiday, nut-free, vegetarian, etc.) if something I have fits the bill. I'll also do some asking around if need be. Giving of time, talents or ideas is free and easy.

I have loved reading all the thoughts and ideas about giving on other blogs. Check Bethany's blog to find everyone else who is participating in her challenge.

To Give, with Love and Care

This is a great time of year to give--to give thanks for all we have, and to help others in need.

Bethany at Life with Bubba, Chicky & Nika had an awesome idea: she started the 12 Days of Giving Challenge.

I will be giving to others, whether it is in a big or small way, for at least the first two weeks of the month on a daily basis. (I may not write about every single thing here, but I will definitely mention some of the things we're doing as a family to give, and to give back.)

Tonight, we were talking about how we could advocate for Bridget and others with Down syndrome. I mentioned Reece's Rainbow and gathered everyone around the computer to view pictures of children waiting to be adopted and families who had already brought their children home.

There are so many worthy places to direct energy and money (and I plan on highlighting a few of those in the upcoming week), but here's one way to make a difference: donate money (even $10) to a child's grant fund to make it easier for that child to find his or her forever family.

The Gift of a Forever Home, from the Reece's Rainbow website:

Our Sponsorship Program provides a unique opportunity for anonymous donors to contribute to the adoption journey of our families. These children are viewed as outcasts with no ability to learn or be functional members of society. They languish in mental institutions, hidden away from the world in shame. Even if you are not able to adopt a child at this time, you truly can change the course of a child's life by helping adoptive families afford the costs of international adoption.

One time of visiting the Reece's Rainbow website, and I can't get these precious faces out of my mind. Is there a sibling here for Bridget, Emmy, Sara, Kyle & Brian?

As a family, we decided to donate for these children (each of whom has $0 in his or her grant fund):

These are just a few of the children who caught our eyes (each one of them reminds us of Bridget), but it is this little girl at the bottom who has completely stolen my heart (she is about 9 months younger than Bridget):

Alina

Born March 10, 2007
"The orphanage shaved all of their heads bald for the summer, but this beauty has dark hair and blue eyes. She needs a loving family to help her be the very best she can be! She is still quite young, but hasn't had a great photo yet. Hoping for her mama to see beyond these orphan pictures and envision her as the amazing, beautiful, able little girl that she is!"

I can so see her with us. I'd already stopped on her picture several times, and then I read this description. My heart just melted. It sounds like something I'd write about Bridget. With love and care, this little girl will thrive.

Anyone would be lucky to have any of these children. Even if you are not in a position to adopt, please consider donating to help bring them home.

Take My Hand...

So An Open Letter to Parents Facing a Diagnosis of Down Syndrome by Lisa Morguess of Finnian's Journey is now available on Mamapedia. For all the parents who are raising children with Down syndrome, and for all the parents who will be walking in our footsteps, this is awesome news. Please read it if you haven't already, and pass it along.

I was struck by one of the comments about Lisa's letter on the Mamapedia site:

Thank you, Lisa, for writing this. It is one of the most accurate articles about Down syndrome I have ever read. I have a grown son who was born with Down syndrome 26 years ago and wish I could have read your words when he was brand new. My son was in kindergarten when I wrote "Thoughts from the Middle of the Night" - It was meant to be a Thank You note to families who paved the way for the opportunities they created so he could show us his true potential. This Thanksgiving I will keep your words in mind as I celebrate the gratitude I feel among friends and family for my life and his. I feel so thankful for all our sons and daughters, and for mothers like you who reach out to us all.

And this made me think about how we are all reaching--out for our children, and toward one another--finding our way along this entangled and enchanted path.

I'm giving thanks, too, for all of it.

Here's an excerpt from the piece mentioned above (click here to read the rest of the story):

Thoughts From the Middle of the Night
Pamela Wilson

When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.

Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.

I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend...

Our Fragile Emissary--A Poem

Our Fragile Emissary
by Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

A Note About Glee

I watch it. I watched it this week with Sara, who asked, Mom, are you going to blog about this? (as I had my face buried in a pillow, sobbing, when Sue went to visit her sister).

I love Sue Sylvester. She is the best character on television. Maybe ever.

I love Mr. Schuester and his mash-ups, Kurt and his dad, sweet Finn, the Cheerios, the hot guy with the mohawk :)...all of it. With the exception of the pregnancy story lines, and the show not being appropriate for young teens--who are watching in large numbers (I have to censor quite a bit with Sara)--there isn't much I don't like.

People have been talking about Glee all fall, and while some people can't get enough of it, others are critical. The show is meant to get people talking...and thinking. The people behind the show know just what they're doing. That became clear in this week's episode. (Click here for a review of the show.)

Regardless of gender, level of ability, social strata, sexual preference, diagnosis, age (and so on), all people are people first, and want to be treated like everyone else.

In life, just as in high school, people form opinions about others without all the information, without truly understanding all the facts. All people want--and deserve--to be seen, and to be treated with compassion.

*This week's show featured two actresses with Down syndrome. I know many people in the Ds community were aware of this prior to the show and watched because of that. Like most everyone else, I was curious how Ds would be portrayed, and how it fit into the story. It was hard for me to see that Sue's sister was in a nursing home, and I didn't love that others (without personal experience with Down syndrome) might assume that all people with Ds end up in nursing homes, or remain child-like and dependent. (The relationship between the sisters was genuine and touching, though, so my emotions were all over the place...hence, the sobbing...hard to process.) The younger character with Ds was a vibrant teenager, perhaps to show another aspect of life with Down syndrome today (I do wish she would have had her own money to buy the darned cupcake). As with everyone else, there is enormous diversity within the Ds population. Both characters are realistic and representative of individuals with Down syndrome. It will be interesting to see where they go with this.

Friends & Fun

Look who was here last weekend (it's Leah from Everyday Elliott!):





We had a lovely visit with the Elliott family (Mary, Eric, Greg & Leah) last Sunday night. Bridget and Leah are close in age (Bridget is about 6 months older than Leah), and are close in size. Leah is almost as tall, but much lighter than Bridget. And, for such a tiny thing, she puts away the food :).

The girls were sweet together. They both like baby dolls, phones, music and coloring. All of the other kids enjoyed one another, too!

A sweet and funny moment of the night: Leah's big brother, Greg, was delighted to find that we have a Captain America costume (and coloring book). He also discovered the big t.v. in our theater room and wanted to stay and watch a movie (of course, just as it was time for them to leave)...which brought about some tears...from Greg (genuine) and then from Leah (sympathetic) and then from Bridget (sympathetic). Greg was sprawled out in a bean bag, in the Captain America costume, in tears, with Bridget and Leah both fake-crying and also trying to console Greg and each other. Aside from Greg's tears, it was h-i-l-a-r-i-o-u-s.

We had a great time. Please come back soon, friends.


*Excuse the quality of the photos...my big camera is out for repair :(. We'll get more shots of the girls together next time!

Attention: Parents of Children with Ds

Are you interested in making a difference? Here's a terrific chance to do just that.

Lisa at Genetically Enhanced is working with the Centers for Disease Control (CDC) to re-create their web page on Down syndrome, and she's asking for detailed feedback from families of children with Ds. There's much work for her to do in a short period of time, so head on over and give some input....

"Germ Warfare"

So all this week, Chris kept asking, Is Bridget coming down with something?

No, I explained, her preschool class is learning about germs...what they are, how they spread, and how to practice healthy habits.

It must have made a big impact on her, because she was sneezing and coughing (in a very contrived, exaggerated way) every other minute this past week. (With all the crud going around, we are all a little bit on edge when we hear coughing!).

Bridget has known how to cough into her elbow for about a year now. She loves to practice covering her sneezes and coughs.

She's such a little actress. And her big break came this week, when she was asked by her teacher to demonstrate the "covering your cough" technique to the class during circle time.

Yea, Bridget. You go girl.

I wish I had pictures of that!

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 :)...