Quailday: Eye on the prize…

She’s getting there! And Momma may have a heart attack along the way! If you’ll notice she chose to do her first “all-by-her-own-self-pull-to-stand” trick on a slippery surface. I literally stopped in mid air with a quick mental debate to snap the picture when she got up or swoop in for a rescue. You can tell by the quality of the photo that I went with a compromise.

This picture was probably a month ago. In physical therapy we can help her with minimal assist to stand and then play and she’ll stay up for a record 19 minutes to date. She’s definitely getting stronger in her core. Now when she starts her lopey crawl down the hall to us she will manage to stay up on all fours for a stride or two before dropping back down into military motions (army-crawl). Her transitions from one area to another and one toy to another have her spending more time in a tall-kneel and her need to continue a daily read-a-thon have encouraged her to take matters into her own hands and pull up!

Our dear Mattie who comes in to spend one-on-one time with the Quail at her school 3-4 days a week sends us a daily update of how the playtime went and I have to say it is one of my high-lights of each day reading about this little bird’s antics. Be it, sweet, sleepy, naughty, into everything or insistent behaviors. Mattie and her have developed a happy rapport and I really get the sense that Mattie gets what is going on in the Quail’s sweet noggin and has the ability to make the most of it and go with her flow. Today’s note demonstrated her using her newfound strength & language to further her campaign platform for longer storytimes for all children:

“Then, I got out her toys and she wanted her Puppies book. I read it once and she signed “book” and “please” so I read it again and then again. She kept signing “book” and “please” so I put the puppies book in the red toy bucket. She crawled over to get it. She tried to lift herself up but didn’t quite get it so she sat down and I heard her say “doggie” and then she signed “book” and “please” again (Ms. Patty heard doggie too). I told her to go get it and that’s when she pulled herself up. She grabbed the book and plopped back down so I read it to her again.”

Way to fly little bird!

corner view: “The Incredible, The Mysterious Mustache”.


In our home mustaches aren’t really very mysterious they are pretty consistently of the dairy variety- kefir, milk, yogurt, ice-cream, etc…

happy corner viewing!

Mommaday: Books

I love books. I like to buy em, to smell em, listen to em, stack em, to research em and oh yeah- to read em. I even buy cookbooks to read and rarely end up actually cooking out of them.

I am lucky enough to have a pretty big collection of the ones I grew up with. And then realizing the need for board books with babies tendency to go fiber-seeking, I started buying them prenatally from the likes of Ross and TJ Maxx where they were so reasonably priced that I cared little for the content. There are only a few I’ve been outwardly disappointed with. Generally I think I’m pretty non-judgemental of the subject matter. I buy into the theory that it doesn’t matter what you read, just that you read.

But as  time has gone on, and I’ve read the same ones again and again. I’ve become a bit hyper-critical of what I like to see in a kids book. And the more specific it gets the less satisfied I am. I find myself rewording the ones we have as time goes on. And then wondering to myself why the author didn’t word it that way in the first place. From the simplest of lines in Sandra Boynton’s, “Moo, Baa, La, La, La”. Where the book follows an easy to learn pattern. So easy that it was the first book that Zuzu “read” back to us. Except for the duck page. Every other page says a different animal’s version of “The cow says Moo!”. Except the duck page which reads, “Quack, says the duck!” Each time Zuzu gets to that page she says “The duck says Quack!” And every time I have a mental debate about correcting the order of the words to what Ms. Boynton actually wrote. Which has me thinking I’m missing the point and not enjoying the moment of pride that I should be focusing on- that she’s reciting the book!

I find myself debating this with countless other books that seem to be going for a rhyming theme or a sing-songy flow and then we get to a page and the rhythm breaks and I wonder if the author read it out loud before submitting it.

And then there is the classic children’s literature that usually involves the death or near-death and punishment of  small children or animals in order to convey a moral lesson or particular value. I guess I’m most disturbed with this. I understand most were written in a time when children were supposed to be seen and not heard and the easiest parenting route was to scare them into submission. But really- did the cradle have to fall in the bedtime anthem?

I”m really not a prude- but I know I have little to no stomach for violence.  The first time I showed Charlie Brown’s  “It’s the Great Pumpkin Charlie Brown!” when Zuzu was 2 I had to turn it off with all the World War I Flying Ace battle scenes. She was scared by the gunfire. We moved on to The Muppets which I remember loving to watch each night when I was little and she asked me why the pig kept hitting the frog when we don’t hit! She had a point, so back to the library the DVD went. Disney movies are the same and get the same reaction. Inevitably there is a scary scene. Perhaps I’m protecting them too much. But I just really don’t see the need for wee ones to be exposed to violence  for the sake of character development quite so early on.

So the search goes on for good books. I now am one of those folks perusing the award lists, trying them out on my lunch hour at the library before bringing them home.

It started early- reading to Zuzu while I nursed- but she was not a mellow baby and it would inevitably turn into her yanking at the book and not focusing on nursing. And early on reading to her while she was in her swing before bed. Way too early to get a reaction…and wondering what I was doing but doing it anyway.

Then along came the Quail- books, books, books. It was her second sign (right after food- genetic proof of my parenthood if ever I’ve seen it) and if you get a book out you best have a good nother 20 minutes to read it to her over and over…she’s not letting it go. She sits attentitively and as soon as your done, signs book, please again. If you put away; she crawls over to it. It does make me wonder- she was exposed in utero to nightly bedtime stories all along. Maybe those pre-natal headphones aren’t so gimmicky after all!

Right now the girls are pretty consistent in their preferences. For the Quail it’s Elmo’s So Big, Touch & Feel books (we have a number of them and she LOVES each and every one), Leslie Patricelli’s Blankie and Higher, Higher and the one that wins them both over anything by Dora. For Zuzu the first choice is always Dora, so we’ve limited it to one Dora book a night and then she can choose two others. Faves are Fancy Nancy, The Goodnight Train, Firefighter Ted and any of The Pigeon or Llama, Llama’s antics. 

Now that I’m done waxing rhapsodic…what about you? Favorite baby books, kid’s story books or lit for Momma’s entertainment?

Gratitude Journal

1. cashmere sweaters

2. white chicken chili

3. park therapy

4. sleeping small ones

5. Mothership Wit


7. Home day!

8.The Daily Show online

9. apple pie fudge

10. first attempts at apple-picking of the season

11. apple slushies

12. Hubba-hubba lunch

13. meeting other kids in “the club” and not realizing it till they’re gone

14. happy Saturday adventures

15. baby shots

16. editing baby shots

17. snuggling baby between shots

18. waking up to the smell of warm good smells

19. watching Wonder pets

20. playing fetch with the baby

21. TV time with hubby

Fave-O-Lit Friday

“Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.” –Eunice Kennedy Shriver

Learn more about the first annual Eunice Kennedy Shriver (EKS) day coming up tomorrow; September 25, 2010 and what you do in your everyday life that helps illuminate and press on the vision, love, spirit and kindness of this woman. Her passion has furthered the acceptance of those with intellectual disabilies in our homes and communities.

Please visit the Special Olympics website to learn more about EKS day and what you can do and how you can spread the word.

Can you help fight Leukemia?

September is National Leukemia and Lymphoma Awareness month.  Could you please consider making a donation to The Leukemia & Lymphoma Society?

Or to the Be The Match Foundation  ? This foundation helps to connect those in need of bone marrow transplants with potential matches. Could you consider joining the registry? Or helping to spread the word?

Help grow the registry. Make a post, spread the word. You never know whose life you will touch, whose baby you will help to make it to survivorhood.

No parent should have to face this fight. But far too many do. It is estimated that the risk for leukemia for young children is that 1 in every 2,000 will develop this disease.

Why does this disease in particular worry me so? Because the risk of leukemia in children with Down syndrome narrows to 1 in 95. Far too many of the dear families in our sweet community have been faced with these statistics.

Far too many of the dear families in our sweet community have had to learn the language of pediatric oncology.

Your bone marrow- it could save the life of a child. Please visit www.marrow.org and add yourself to the National Bone Marrow Registry. The more people that join and help spread the word the closer our children are to growing up and seeing adulthood- a simple wish. One that we should all be able to have.

The odds of surviving Leukemia are so much better in this day and age. We are so blessed that medical technology and the compassion of people like you have made this possible. For a lot of people survival means finding a match. Please register. Please donate. Please spread the word.

Come meet some of our dear friends who are fighting for the lives of their sweet children.

Meet Lois…

and Zoey…

and Ella…

and Emily

There are far too many like them. Let’s do what we can to fight this disease. Let’s give these children a chance. Please stop by and visit our friends to let them know you are thinking of and praying for them. They will appreciate the kindness.

corner view: humor


a rousing game of peek-a-boo...

In our home; the range of what we find funny is vast. We rolick with delight in the Quail’s early morning rounds of peek-a-boo, post-kidlet-bedtime-viewed episodes of The Daily Show. Lovey’s Rocks- both Yacht and 30, our favorite modern day Desi & Lucy‘s antics and Zuzu’s newly acquired skill of telling knock-knock jokes. 

Here’s the thing- the repertoire; well, objectively speaking- is sorely lacking. The two-drink minimum dinner entertainment viewed nightly in our home usually starts like this: 

Knock, knock....

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Banana” 

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Banana” 

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Banana” 

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Orange.” 

The ‘rents: “Orange who?” 

Zuzu: “Orange you glad I didn’t say banana?” 

Once we make it through Act 1, Acts 2-6 follow with the banana being replaced with any item in viewing distance. The girl’s got great generalization skills. What can I say? 

That being said- could you help a beleaguered family out by supplying some new knock-knock resources we could foist upon her? 

I’ve learned to cope with Zuzu’s other newly favorite brand of entertainment- repeating what I say verbatim by supplying her with items I like to hear. Early on I learned that just being silent wasn’t enough to redirect the, ahem, behavior . It just made her eyes sparkle more lustrously as she eagerly asked, “Momma, don’t you have something you want to say?” ; then articulates the exact tone of my, “No.” right back to me.  If I have to have my words mockingly replayed, it might as well include sentences like, “Oh my Momma, what pretty hair you have today. Oh Momma, I love you soooooo much. You are just the best Momma ever!” Zuzu usually tires of repeating this long before I tire of hearing it. If only I had thought up this response back in fifth grade when it was every boy’s favorite game! 

Oh- and I’m not joking about the knock-knock jokes…help us out people! 

Quailday: another kind of happily ever after…

Do you know Dave Hingsberger?

He’s a strong advocate and friend to a lot of us that find our lives touched by the world of disability. He’s compassionate, thoughtful and quickly analytical. He gets the struggles that sometimes seem inherent in the lives of those that are marginalized by their communities. I had the good fortune of hearing him speak many moons ago as a young social work intern learning my way in the field of disability advocacy. His words touched my heart and stayed with me even though I only saw him a few times and so very long ago.

Shortly after the Quail was born and I found myself repeatedly googling disability issues and reacquainting myself with our modern-day heroes and advocates. I found out that Dave makes himself a willing and daily member and advocate of our community via his blog. What good fortune! What wisdom. I feel so blessed to live in a world where technology has enabled me to have access to wisdom and support at all hours of the day.  Particularly on sleepless nights when my mind is in a race with my heart to beat out worry.

A couple of months ago Dave took fingers to the keyboard to convey the unconventional wisdom found in an ordinary everyday situation- a mom and her teenage son dickering about his right to be independent on a daily basis. His right to the dignity of risk. Years ago, as a young whippersnapper of a social worker living in a liberal community,  I would have read this story, and been rallying around that young teenager. Of course he should get to go get his food in the mall without an escort. It’s the mall, he’s a teenager, teenagers hang at the mall all of the time without befalling dire consequences. Right? Having a disability shouldn’t mean you have to be escorted everywhere.

But sadly, in our world, in this day, those everyday situations can befall horrible outcomes. Not everyone respects people’s dignity of risk or frankly- human life. Some people spend their time making others who have worked so hard to be a part of the community, to be accepted, to at least be allowed to live in peace, live a nightmare- at best. As a mother I hear about these stories and I want to take both of my children in my arms and never let anyone talk to them without first going through a battery of testing of my own. The fear eats at me. The worry of what I can do to prevent any harm befalling anyone tugs at my soul. Why anyone would insist that their right to call someone a ret@rd is more of a priority than the person on the receiving end’s dignity is beyond me. Just because we have the right to say what we want doesn’t mean we have to. I will never understand people defending their right to be mean. It’s one thing for someone to make a mistake, realize it, apologize and learn from it. We’re all human. It’s a diagnosable personality disorder to defend the right to hurt others.

The critics and trolls insist that as parents and advocates asking you to please remove this slang from your vocabulary is petty, politically correct and  an overstatement of the issue at hand. I would say the extinction of Ernie Hernandez Jr’s life is a sad statement to the seriousness of the issue.

Our world is changing though. It’s this fact that restores my faith. The world understands now that people who clinically have the diagnosis of mental retardation can learn. They may learn differently, but they do learn. The term retardation when used appropriately isn’t the issue. The issue is that a wide sect of people use it to degrade others and then defend their right to be ignorant about it. The issue is so significant that even the medical community has decided to step in and revise their language. The correct term in the DSM-V will be intellectual disability.

We can all learn, if we are willing. As a friend, a community member, as a co-worker, as a family member, as a fellow human being I am telling you it gives me pause when you say ret@rd in reference to something you did that you think was stupid. I know you may not have thought about it before. I know you may not have had any reason to question it. Everyone says it right?

Well give me a few minutes of your time and open your hearts and mind and take the opportunity to learn about the history of people diagnosed with mental retardation. Read this. Know the struggles that have been faced and won, and those that still exist. If you still disagree about the significance of the R word, that’s fine. Just as a friend- please don’t use it around me or my family. That’s at least a start.

And as to that teenager and his mother; well, let me commend her and her brave heart. She listened to her son. As a social worker and disability advocate I had no doubts about his rights. As a momma to a sweet Quail making her world in her community, I stand guard to the harm that may befall her one day. And hopefully, one day, I’ll be as brave as that Momma to know when it’s time to let her fly. With the wisdom of folks like Dave, I’m sure I’ll stay the course.

Our language frames how we think about others. Help eliminate the R-word from everyday speech. Won’t you please join me in taking the pledge to end the R word?