Pondered In My Heart

Happy Heart Day, Eliza!

Once again, she wanted pink frosting on her heart cookies.

But it's her special day, and so pink frosting it is!

St. Faustina, the spotted horse, pink heart cookies and Eliza. You can read about this special anniversary of Eliza's in a previous May 19th post here: Matters of her Heart.

Jesus, I trust in You! Deo Gratias!

Wordless Wednesday: Because it's 3/21 Day

(And because she's the cutest, sweetest, prettiest gardener in the whole wide world.)

Wordless Wednesday: Lizzie and Lazzie

 

 

(musn't neglect her ears)

 

Wordless Wednesday: "I'm Lucy Pevensie!"

Wordless Wednesday: Peter Rabbit in the Waiting Room

Hello from Eliza!

  
Welcome Faith and Family readers! I was so thrilled when the amazingly talented and all-around wonderful Danielle Bean told me she was planning for a pro-life issue of Faith and Family Magazine, and that she was including an article about special needs children. As Danielle so aptly put it in her editor's note "we need to do more to educate people about the special gift a child with special needs can be to his or her family."

 

We couldn't agree more, and that indeed has been one of my motives since the very beginning in blogging here about our family life. To share how very blessed we are by our special Eliza - 

Occasionally I use words, but most often just pictures, to show how she is just a regular part of the family, full of personality and life and love just like any other child.

Just like everyone else in this family, she loves books

and music

She loves dancing

and dressing up

and cooking
 

and painting.

(I call this picture What did you say about 90%?)

But in other ways she is different. She is special. She is most loved and loving and lovable. This song truly hits the nail on the head with its lyrics, 'She lives her whole life without one trace of guile, and she lights up the world with that crooked little smile, she loves you with a love so pure it just makes your heart break...'
 

Every word, every look, every pat, every kiss, every hug of Eliza's has the potential to bust your heart because she does just that -she loves with a love so pure, so sweet, so without guile.

So very many times a day we can't help ourselves, we just grab her and squeeze her and kiss her and love her and thank God for the precious gift she is.
 

I recently read a story about a young couple who were shocked, scared, overwhelmed and crying when they learned that their first child would be born with Down syndrome. Then they were invited to visit a little girl with DS, and within minutes they realized 'we can do this!' That is one thing I strive to do with my blog here - to give people 'just a few minutes with Eliza'. Nothing delights me more than when I get emails from readers telling me how Eliza helped to 'prepare their hearts' for their own special blessings.  
 

And so I thank Danielle from the bottom of my heart for focusing on these special children in her magazine and bringing attention to the special blessings that they are. Clearly, Eliza thanks her too!

xo

And Now She is Seven

Our little queen had a birthday yesterday.

Now Eliza is a great big seven year old girl. Seven sounds so very old for this very special little girl.
 

But she can read her own birthday cards-

She knows just what to do at a birthday party-
 

And she can read her own chocolate owl cake-

 
She can take care of her own candles-  

 

She opens presents like a superstar-

Kateri made her some super star bling-

 

She got lots of handmade gifts that were stitched and sewn and painted with so much love-

 

Mary Rose has just learned to crochet and made a little scarf for the birthday girl. And every stitch was worth it just to watch her do this-

 
She just wrapped all that love right around her neck.

"I got new peg dolls!"
 

And she got tiny wooly barn owls-

There's a whole lot of love tucked into these little owls-

 

Every girl loves a new dress-

And every queen has to have a golden crown-

 
I wish I could explain what a privilege it is to know and love this girl. I wish there was some way to convey how when she speaks it is with such utmost sincerity that every word she utters has a sweetness that can break your heart. She speaks and blinks her eyes and looks at you and it's as if she is speaking from the depths of her innermost pure soul, and you are so very privileged to receive a word from down in there. And her eyes take you right down into those depths, and the trip is so pure.

I wish you could understand how when you hug her and kiss her softness it makes a part of you melt, and you become softer. How when she loves you it is with such a pure spirit that it pierces right through you to your very soul, and you feel so very special. You feel like you've connected with a morsel of humanity that is unlike anyone else you interact with, and somehow it is so much more pure and meaningful and real. It is unspoilt by any hint of pretense or self-serving or guile. And she makes you happy. She makes you want to be good and pure and real and always of good cheer.

 

But I don't think I can possibly explain it. So I just show you lots of pictures of her sweet, beautiful face and hope you can catch a glimpse of the joy and delight and blessing that she is.

 

Happy Birthday, Eliza! We sure do Love you!

An Update on My Little Reader

Eliza has been making great progress in her reading skills during the months since I wrote that big post about early reading strategies.

From those simplest of stories she moved on to longer ones that I wrote for her. For these I used a large font on the computer and wrote short, simple stories about things she is highly interested in. I type these up using two colors of text, alternating the colors with each sentence. This helps the reader to more easily see where the sentences end and encourages pausing between sentences. Eliza still has a little trouble with this as she tends to pause at the end of the line and not necessarily at the end of the sentence. The colors also help with tracking when moving the eye from the end of the line at the right side of the page to the beginning of the next line on the left as it's easier to see where to continue. Some examples: the 'Molly and Max' story is one of the earliest, simplest stories with short sentences and small words. 'Molly and Max' is longer and goes onto the second page.

I put some of these stories into page protectors so they would last longer. Eliza has a stack of these and she still enjoys sitting down and reading through them all.

The repetition is good practice for her and also builds her confidence as she is familiar with the stories. It also allows for work on pausing between sentences and such, as she is not struggling much with phonics and de-coding the words. As Eliza progressed with her skills I changed to a slightly smaller font and the stories got longer as well, up to two pages long.

She has also moved on to easy readers and is gradually expanding her abilities and comfort level with more and more books. This happened in quite a monumental way that I will always remember. Throughout all this reading instruction bright little four-year-old Kateri has been working right alongside Eliza and taking in all of this reading business. She read my little homemade books and Bob books and all right along with her big sister. And then one morning she made the astounding discovery that she could just pick up a book and read it all by herself, sounding out one word at a time. And then the most amazing thing was as Kateri sat at one end of the couch making her way independently through an easy reader, Eliza thought to give it a try herself at the other end of the couch.

I was in the next room marveling at the sight of the two of them each reading her own book out loud entirely by herself, word by word by word. Here is Eliza plowing her way through Syd Hoff's Chester on that momentous morning:
 
And they haven't stopped since. As would be expected, Kateri has taken off wildly with her reading while Eliza continues making slow and steady progress. She reads in the car

she reads in the kitchen, she reads here and there and everywhere. She likes Frog and Toad and Owl at Home and Chester and Thunderhoof. She reads to herself and she reads to her baby doll and the two little girls read to each other.

A great triumph came when she sat down and read one of her most favorite, beloved books to her dear Dad - The Fire Cat in its entirety!
 

(Perhaps you remember how much she has long loved Pickles.)

 
 Here's a recent clip of her reading about Molly the Owl so you can see how far she's come since The cat and the dog sat on a big red mat.

Make video montages at www.OneTrueMedia.com

Wordless Wednesday: Charlotta the Fourth

 

 
 

...a girl with a snub nose, a mouth so wide that it did really seem as if it stretched "from ear to ear," and two long braids of fair hair tied with two enormous bows of blue ribbon.

The two upper bows rather gave the impression of overgrown wings sprouting from Charlotta's neck, somewhat after the fashion of Raphael's cherubs. But Charlotta the Fourth thought them very beautiful, - Anne of Avonlea

Found on the Camera

 

Sweetest toes around!

Just don't tell Dad they were on the keyboard.
 
(Apparently dear Eliza has been having fun with the digital camera.)

Wordless Wednesday: Art Lesson

   

Matters of Her Heart

 

Yes, it's time for heart cookies again. Miss Eliza wanted pink frosting, and I was very happy to make it for her. As I explained last year, on May 19th we celebrate the anniversary of Eliza's open heart surgery.

In some ways it's like another birthday, because May 19th was the start of her new life, life in which she could grow and thrive and be well. Eliza was born with an atrioventricular canal defect, meaning she had several holes between the two sides of her heart and a large common valve in the center where the mitral and tricuspid valves should be. The defect causes progressive congestive heart failure, and the doctors try to wait to do the repair until the baby has grown some but before the heart failure gets too severe. Eliza had her surgery two days before she turned five months old.

 

Typing that bunch of words is rather simple and easy to do now, but this anniversary day takes me right back to six years ago when things were anything but simple. I remember so well so many little things. I remember the prenatal ultrasound tech acting funny, claiming the scan was taking forever because she couldn't get a good view of the baby's heart. Until she finally brought in the radiologist to explain there was in fact a problem with baby's heart, and we'd better talk to our doctor who would explain it all. And so we waited to talk to my dear doctor who called and indeed explained yes, there were holes in baby's heart requiring open heart surgery and yes, Down syndrome was very likely as well.

I remember the fear. I am a very visual person, and I go through life picturing everything quite vividly in my head. But I could not picture how anyone could repair valves inside a tiny infant's heart. They say your heart is about the size of your fist. Picture a tiny baby fist. And I would imagine what it would be like to do surgery on such a heart. And it terrified me. But surgery was still a long way off so I tried not to think about it too much throughout the remainder of the pregnancy; I couldn't picture it so I wouldn't let myself think of it. And eventually our sweet Eliza was born, and we were deeply in love with our quiet little girl.

 

She did well at first, but as the months went by and her heart had to work harder and harder she had less and less energy for anything else. She never cried. My days were entirely consumed with trying to feed her, but she had no energy to eat. Every day started with Eliza on the scale, measuring and charting every tenth of an ounce; Michael used to say he could tell by the way I said hello when I answered the phone if she had gained or lost. It's a desperate feeling to know your baby isn't growing, isn't thriving, and is getting sicker by the day. I remember how sweaty and clammy she was, and how fast she breathed, her little tired body trying so hard to get the oxygen she needed. Her resting respiratory rate was 80 breaths a minute (you try that). Her color was bad. It was time. And I remember the change in my heart, from fear and dread of surgery to please, fix my baby and make her well. Because she clearly couldn't go on like that.

I remember the meeting with the surgeon. I remember his calm and gentle demeanor and how huge his hands looked. I remember how he wrote down the long list of possible complications as he explained them to us...infection, heart attack, stroke, and at the very bottom of his column, death. I remember the hours in the chapel, pleading before the Blessed Sacrament. I remember the well meaning friends who said not to worry, everything would be okay. And I remember thinking yes, it might be okay. Or she might die. But I also remember learning to trust with every breath I took, every moment of every day, Jesus, I trust in You. Whatever happens, I trust in You. The fear was like a giant wave threatening to overcome me and engulf me and drown me, and I remember just pushing it away as if with a giant hand, Jesus, I trust in You.

I remember the enormous rainbow that appeared over our house the evening before surgery, and it gave us great hope and comfort. We had to be at the hospital at five the next morning, and as is our typical way, we all went as a family. There are so many precise moments that I don't think I'll ever forget as long as I live. We called her Elizabeth back then, and I remember handing her over to the anesthesiologist, and the empty pit in my very being as I watched him walk away carrying my baby off to the OR. I remember the waiting. It started off easy enough, but got more intense as the hours went on. I remember my rosary breaking and all the little beads bouncing and rolling across the floor. I remember the social worker coming to give us a long awaited midway report, and how as he walked down the long hallway towards us his face told us absolutely nothing. But then his mouth opened and he told us Eliza was off the bypass machine, and her heart was beating on its own. I remember that moment. 

And I remember when the surgeon came out to talk to us when he was finished with her. When you talk to a cardiac surgeon after he has just completed an operation on your baby you want him to say, Everything went great! But he didn't say that. He said, I did the best I could do. I remember those words. And I remember being so grateful for the best he could do.

I remember when they told us surgery was over and they would be bringing her up to the PICU, and that if we stood right in this spot and watched we could see her go by. And I remember the elevator doors opening and the stretcher being rolled off, surrounded by caregivers hunched intently over her. I watched the rhythmic squeezing of the anesthesiologist as he bagged her, and I thought of how he literally had her life in his hands. But I thought no, He has her life in His hands, this man is just using the ambu bag to provide the breaths.

I remember finally being allowed in to see her, and I sat at the bedside of my baby on a ventilator and hooked up to six IV pumps and tubes and wires coming out of every where, medically paralyzed so she could not move, nurses continuously adjusting beeping med machines until they got the numbers they wanted on the beeping machines monitoring her vitals. And I marveled to watch her breathe. Slow, even breathing. No panting. And I was amazed. I couldn't stop watching her breathing, so slow and peaceful.

I remember the first echocardiogram she had after her surgery. I remember the kind and gentle man who came to her bedside with the portable ultrasound machine, and I remember looking at that screen. I remember how incredible it was to see a heart with four chambers and the blood flowing in the proper direction instead of sloshing every which way. I was so thankful.

Having no beads, I prayed endlessly with rosaries and chaplets counted on her fingers and toes. I rested my chin on my hands on the side rail and looked at her. I wore a sore spot on my chin that week.  I remember how she spiked a fever that first night, and she looked even more pathetic as they surrounded her with ice bags and even put one on her head. They next day she was too sick to take off the vent, and I was sad. She had difficulties and setbacks and made slow progress, but I remember so many moments of mercy during that time in the hospital. When I was down and discouraged and bordering on despair He would send a little sign of encouragement, and I was so thankful for His care. One night I caught a glimpse of the Divine Mercy medal around the neck of the night shift secretary, and the next night she brought a medal for me. Those kinds of mercies mean so much when you are having a hard time and struggling to keep it together. I remember all of those moments when He made His care so clear.

I remember how Eliza would not smile once while she was in the hospital. Her siblings came to visit her and she would look at them but she had no smile in that place. She took a little longer than average but she eventually turned the corner and got well enough to come home. I remember being frightened of taking her off the monitors. After so many days of staring at beeping machines and having everything depend on those flashing numbers it seemed scary to not have them. And watching mandatory instructional videos on infant resuscitation didn't help. But again I remembered, Jesus, I trust in You.

I remember so clearly leaving the hospital. After not even leaving the seventh floor of the hospital for a week I recall being amazed to get out and see that the sky was so blue, the sunshine so bright, the flowers had bloomed while I was hidden away inside. I remember the incredible feeling of walking out of those doors with my baby in my arms, alive and well. And while I did manage to keep it together with just a few quiet tears here and there throughout my week stay, I walked out those doors and cried my heart out. Big, choking sobs of relief and gratitude overcame me and I trembled as I carried my girl to the car. I was so very thankful to be taking her home.
 
Six years later she is happy and active and doing so well. She makes us grin with just about every word she utters. And she has a telling white line going down her chest. Every day I notice even the tiny little scars on her neck where her central line was stitched in place. And six years later I am still so very grateful for her beating heart and her rosy cheeks as she runs and jumps and plays. Her valves still leak and she is still on meds and we still live by Jesus, I trust in You. I am so grateful. Not just on May 19th, but every single day.

Early Reading Strategies for Little Learners

subtitled: Giant Post on Teaching My Child with Down Syndrome How to Read

Many people have asked about my teaching methods in helping Eliza learn to read. In some ways it has been very similar to teaching the other children - she has progressed through the same stages of letter recognition, learning the main letter sounds, and understanding how those sounds work together to form words. On the other hand her progress has naturally been slower than the other children and we need to use additional strategies to accommodate her cognitive delays, speech limitations, short attention span and less than average motivation. The infatuation with letters and the progressive steps of phonemic awareness that seem to happen naturally through 'osmosis' in a print-rich homeschool family environment need to be helped along and purposefully encouraged with the special needs child.

Special learners need lots of repetition and constant reinforcement of lessons, and using a variety of methods and materials is important to maintain interest over time as the learning is slower. While using a single resource like Teach Your Child to Read in 100 Easy Lessons might be fine for a typical child, for my special learner I have maximized our use of creative and widely varied materials. We also take advantage of her most favorite things and use them for learning purposes: Eliza loves books, music, puzzles, Signing Time, and the computer and so we've capitalized on our use of these for educational gain. In order to accommodate short attention spans it helps to practice frequently in short little 'lessons' throughout the day - a few 15 or 30 minute blocks scattered throughout the day can be more effective than trying to sit down for two hours straight. When we are doing learning work I often have Eliza sit right on my lap to help keep her focused and on task. Patience and perseverance are key.

Eliza has known her letters for a few years now and she learned them in quite the typical ways - lots of letter puzzles (this Lauri one is our favorite), foam letters in the tub (children love how they stick to the walls), letter blocks, alphabet books, singing alphabet songs and on and on. And then of course reading lots of books in general, pointing out letters, writing notes, labeling household objects, forming letters out of pretzels, straws, sticks, or whatever, file folder alphabet games, magnet letters on the fridge, chalk on the sidewalk, white board, chalk board and magna doodle. We have an alphabet of wooden letters and a collection of bottle cap letters (and if my littles didn't already know their letters I'd make these scrappy letters- so cute!). 

We don't have sandpaper letters but I did make Eliza a book years ago with one capital letter on each page, each one made of a different texture - duct tape, sandpaper, velvet, ribbon etc. When she was learning her letters I encouraged her to trace the letters with her fingers as I told her each one's name. There's also alphabet cereal and alphabet soup and you can make alphabet cookies. The possibilities are truly endless.

Another great help was the Signing Time ABC DVD which remains a favorite to this day. All of the Signing Time DVD's are helpful as the printed words are shown on the screen at the same time as they are signed in ASL and spoken, really helping to teach the concept of words being made up of letters and letter sounds.

Once the letters are learned, or even before they are all learned, comes the process of learning the sounds they make. This is easily accomplished just through everyday conversation and playing and all, taking note of words and letters and sounds - This is your belly button. Belly button starts with B. B makes the buh sound. Buh buh buh belly button. that sort of thing. Again, alphabet books either purchased or home made showing lots of words beginning with each letter provide lots of opportunity for practice and review. We have made simple index card sets - put a letter on each card and glue on pictures cut from magazines of things starting with that letter. Collecting objects for sorting according to their beginning letter

and alphabet puzzles such as this one with a picture for each letter are useful as well. You can also play games such as name three things that start with b, find five things in this room starting with p, or which one of these six things starts with a different letter.

And then once the sounds are learned we can start to put them together into words and embark on that great accomplishment of skill and deciphering and comprehension and speech we call reading.

It's always nice to learn how to spell your own name first, and singing is often the easiest way to learn something. I teach them a little song to the tune of Farmer in the Dell - We're going to write your name, we're going to write your name, E-L-I-Z-A, we're going to write your name. Make up a cute namecard and leave it in a prominent place for a reminder and write frequent personalized love notes. Another good first word is 'Hi' - just two letters but repeated over and over again the child gets the idea that letters make words. Just a little note like 'Hi Eliza' gets across the big idea that we can communicate through reading and writing.

We used the milk cap cards seen here for early letter practice,

 
  
and now we use the same caps with these cards for spelling practice.

Slide your finger under the text whenever you read to the child - this helps with learning the left to right pattern of reading and helps the child see that words are made up of letters. 

You can play 'store', making little card labels for the various objects you set up for play. At times we put labels on common household objects, taping up cards for simple things like table, chair, potty, window, book, plant and so forth. While these might be more difficult words for the child to actually read, it is helpful for conveying the idea that letters make up words that we can read, reinforcing beginning letter sounds, and allowing the child to pretend to read the words. Just the action of looking at a word card on a familiar object is helpful - the child points to the word and names it, and although the child may not actually be reading the word it is still teaching the very important concept that letters make words that we can read and say out loud, and that it's not some magical thing that only grown ups can do. I can remember my other children developing print awareness at a very young age - one of my babies would look at the print on the tag on her bib and babble, but as I said, this concept may take the special learner longer to understand and you might need to help it along. 'No' is also an easy-to-read and very useful word (!) - we've had 'No' signs on things like the freezer and wires and other no no's. You don't want to over-inundate the child with a label on every item in the house, but you can do these things a little at a time and change things out and rotate and so forth to maintain interest and variety.

For learning word families I use various tactics such as flip books which vary the beginning letter.

 
You can reinforce the lesson while playing with letter blocks, letter cards, writing on the white board or whatever. Someone recently gave us these great letter magnets.

I've made little card sets with word groupings that have similar middle sounds, such as 'ee' or 'oo' - use colorful or shiny letter stickers if you have them for a little pizzazz. For words with 'oo' in the middle I've used loose leaf reinforcement stickers for the oo's, and then written other letters on cards. You change out the first and last letters while sounding out words like toot, boot, coop, hoot, etc (or use two p's if you dare).  Cheerios can also be used for 'oo' practice. 

 
Just like hand motions and fingerplays enhance a child's learning of songs and rhymes I try to incorporate a bit of that with learning to read. Eliza does know the ASL alphabet well, so I might use sign to help reinforce things. Just today we were practicing words with 'ee' in the middle and I signed double 'ee's for her every time I made the long e sound, helping to differentiate it from short e. I did the same thing with 'oo' - I sign 'owl' which has two 'o' handshapes, and say whoo whoo whooo like an owl, to teach the oo sound and remind her it's different from a single o which makes the short o sound. We put our fingers to our lips for the 'sh' sound, I give a little pretend pinch for the 'ow' sound, pretend to shiver for the 'br' sound - that sort of thing. These associations really help to reinforce new sounds.

Just singing the letter sounds is helpful as well, as music makes anything easier to learn and remember. I often make up little ditties to familiar nursery rhyme tunes to teach new things.

If you watched the video of Eliza's earliest reading you saw how I write one word at a time on the white board for her to read. There are many advantages to this strategy - it keeps her interest as she is curious as to what is going to come next and it prevents a feeling of overload - I reckon that to a brand new reader a whole sentence could look as overwhelming as War and Peace and makes it too hard to even think of trying. But one word at a time is doable. When I get to the end of the sentence I draw a picture to illustrate the sentence, and that is a little reward for my little reader. She knows a funny picture comes at the end so that provides added motivation to try and find out what it says. We also go through and read it again for practice before it gets erased.

With my other children I would make what I called a 'Read and Draw'. I would divide a sheet of paper into four or six sections and write a simple sentence in each box. The child then would read each sentence and get to draw the picture for each one, for example Six pink pigs on a big bed. A red cow in a box. Eliza is not that advanced of an artist, so I haven't done this with her yet but rather we draw the picture for her after she has succeeded at reading, but my other children used to enjoy it.

Sometimes I use the white board, and sometimes I write sentences on paper using the same one word at a time method. The paper ones can be saved and Eliza likes to re-read them all for practice. The pictures then serve as cues if she gets stuck on a word in the sentence. We have a bunch of these one page 'stories', and you can see the sense of pride and accomplishment in Eliza's eyes as she goes through them.

 

Variety and maintaining interest is key with special learners, so we also mix it up and use the keyboard. Eliza sits on my lap, I set the screen to a giant font, and I type one word at a time. When she was first starting I would change the font color for every word as well, again to stimulate interest and motivation. Now she is better at reading and I don't need to be quite so engaging -if she seems to get fidgety I'll change the color or font after a few sentences rather than for each word. Occasionally I'll print something out to keep.

(illustrated by Mary Rose)

We are also using an online phonics program. I debated for a while about doing this, as Eliza is so enamored with the computer I didn't want to feed her already over active cyber appetite. But we realized it would be good to capitalize on her enthusiasm, so I bought a subscription to the Click-N-Read program. It has been helpful as the computer graphics and sound combine to reinforce and solidify the phonics we are learning. It also regularly introduces new sight words, and Eliza picks them up readily in this format. We only do a couple of lessons a week so she doesn't tire of it or get bored, and I've been pleased with her progress. It has also helped her to develop that all-important skill of using a mouse! There are also several sites with free phonics games such as Starfall, or Owl and Mouse (scroll down for letter sound games) - just google online phonics games for many others. If you are interested in a full program you can preview trial lessons from Click N Kids or Explode the Code, and if you decide to buy the Homeschool Buyer's Co-op has great discounted prices on both.

Another strategy for all little readers is to make little books suited to their interests. I cut a sheet of paper in half, fold and assemble it into a little booklet, then it's ready for a custom easy-to-read story. Write a few sentences about the child and her favorite pets or toys, add some cute pictures, and you have an irresistible little reader. Keep the words simple with large, clear text and lots of white space. 

 

Bob Books are also great as the small format, simple pictures and limited text on each page makes them very friendly and non-intimidating. But homemade books can be tailored to the child's interest and are also colorful and more attractive, and again we need lots of variety. Here are a few 'vintage' books from when Anna was learning to read - she had a favorite little stuffed dog named Jack so I wrote numerous stories about Jack.

I make these very simple books without using staples or tape. Cut a sheet of paper in half and then fold each half. On one half, cut in an inch on either end along the fold:

On the other half, shave off a thin slice along the fold, starting an inch in from the ends -

it will look like this when you open it up:

Then take the page with the snipped ends, roll it in half and slip it through the slit page like so:
 
 
Then you open it up and have a book with interlocked pages. You can snip the ends of more than one half sheet of paper to make a book with more pages. You can also make these with full sheets of paper so the finished books are the size of a half sheet of paper. I like to use the small version as shown, with the finished book the size of a quarter sheet of paper and just right for little hands. These directions are from Dinah Zike's Big Book of Books, which incidentally is a great book with all sorts of creative ideas for making homemade books.   

I also take every opportunity to reinforce to Eliza that she is learning to read, again for encouragement and motivation and the repetition, repetition, repetition that is needed with these children. For example, I am currently reading Winnie the Pooh aloud to my little girls, but even in the midst of that seemingly giant book there are words that Eliza can read and I point them out and let her say things like ow, no, Owl, and Pooh to help out. This helps remind her that she is a real reader and helps boost her confidence.

It goes without saying that frequent praise and encouragement are welcome and needed, especially with reluctant learners. I often think of my DS book on gross motor skills; when it describes helping the child learn to crawl the author encourages you to get on the floor across the room, wave your arms, gather the siblings, rattle toys and 'generate hoopla'. These children often lack the self-motivation that other children typically have and we must constantly and in all things 'generate hoopla'.  Cheer them on every step of the way. Share their accomplishments with siblings and others. Have them read their lessons of the day for Dad when he gets home - he can add his praise and encouragement and your student gets the lesson reinforced again. Eliza has even read to her Nana via Skype!

 

Finally, a friendly reminder that all children are unique and progress at their own rate and in their own fashion.  I post all this not to invite comparisons but to give hope and encouragement and concrete ideas for helping our special needs children learn to read. Remember our children will do what our children will do when our children are ready to do it, and no matter what they do or don't learn in this life they are made in His image and will always Shine.

She Reads!

 

Six times now, it's always magic, but never has it been so sweet.

 

 

Wordless Wednesday: "I love my sister - take a picture!"

 

 
 
  

 
 
  

 

 
 
 (I couldn't possibly take just one...)

Handwriting With Smiles

 

A few people have asked about the wooden letters seen in my previous post about our alphabet studies.  I've never used a specific 'handwriting curriculum' with little people before - I  remember Jonathan learning his letters with pretzel pieces while sitting in his high chair. Most of my children have also learned to write quite naturally by living in a 'print rich' environment where drawing and writing happen pretty much constantly. When Jonathan was two his Nana sent him an easel for his birthday, and we set it up for him right away. Michael and I can still vividly recall what happened next - without any sort of prompting Jonathan painted his name all by himself, frequently turning his little blond curly head to glance at the love note on the refrigerator he was using as reference.

 

Now Miss Eliza has known all of her capital letters and most lower case letters for quite a long time, but she has yet to learn how to write all of them. I knew she would need more structured help so I invested in some of the Handwriting Without Tears curriculum. It uses a hands-on multisensory approach to learn proper letter formation, and I know with Eliza the more senses involved the better. One of the key components is wooden pieces that are used to form the letters - children can play with and handle the straight lines and curves, gaining familiarity with their shapes. The pieces are placed on a mat in proper order, and the child traces the letter in the proper order as with writing each letter. A special mat is used with a smiley face on top to show where to begin the letter. (These can be purchased, but here the girls are each just using a piece of foamtastic with the smiley drawn on with a sharpie.)

Start at the top, big line down, back to the top, little curve, little curve (sometimes we say belly, belly). 

As we form or trace the letters we repeat the directions verbally, adding more sensory cues. Eliza learns these directions and repeats them as she traces, so she is speaking, hearing, seeing, and feeling the proper letter formation. We repeat the directions as well as she transitions to writing on paper.

 

While we are not following the program exactly, I have the Kindergarten Teacher's Guide and I'm very pleased with it.  It's a great resource containing a wealth of information about the approach, as well as lots of tips and creative ideas.

The program also advocates writing the letters in gray boxes in order to prevent letter reversals. For example, if you are making a 'B' and draw your starting line in the right place, you have to put the bumps on the right side to stay in the box. I did buy the kindergarten workbook, Letters and Numbers for Me, which is a wonderful workbook and very reasonably priced. However we haven't used it as the practice areas provided are way too small for the level of fine motor skills exhibited by my two current students.  I made up my own box paper, as seen in these pictures.

 

I have made two sizes of box paper, the large has nine boxes on a page and the small has sixteen. I also made some that includes smiley faces for the starting point. Using a smiley face instead of just a starting dot insures that the paper is used right side up. The boxes with a smiley in the top left corner are used for letters like F, E, D, P, B and so on. As I explained, if the child positions the starting line correctly by starting at the smile on the top left, the remainder of the letter is naturally added on the right side to fill the box. I also made boxes with top center smiles for center starting letters like A, C, T, J etc. I am happy to share these papers, and I have them grouped according to size with three types (plain, top left and center start) of each size:

Download Gray Box Paper Small

Download Grey Box Paper Large

The Handwriting Without Tears materials are also available from most large curriculum suppliers. May all of your handwriting with little ones be happy and smiley and always without any tears. :-)

Highlights From A and B Weeks

We've started down the alphabet trail with these two little ones. With a tip of our bonnets to The Utterly Lovely Alphabet Path we are exploring a letter each week, focusing our handwriting, crafts, saints, stories and science on the letter of the week. Much of the wonderful resource that is Serendipity  is currently beyond my three year old and special needs five year old, but much is also there to inspire and glean from.

 

Sorting objects according to their beginning sounds.

A is for apple.

Both little girls love to paint and are pleased with the simplest of projects, so the paints come out just about every day.

 

A is for angels, St. Agnes and St. Anne.

We are greatly enjoying An Alphabet of Catholic Saints, a little treasure of a book that has a picture and simple rhyme for every letter of the alphabet. It's just perfect for this age.

A is for ant.

The girls were delighted to make these egg carton ants, learning about the three parts and six legs of an insect along the way. They did have a little trouble with head, thorax and abdomen but Eliza gets creativity points for head, belly button and bottom, no? ;-)

After we made these giant ants we read  McDuff Saves the Day, in which the entire picnic lunch gets devoured by ants. That gave me the idea to make these picnic pictures with foods cut out from catalogs-

After gluing on the paper parts, the girls added the parade of ants with black paint thumb prints, which they thought was grand.

Then they added the legs with a sharpie after the paint dried. (Singing The Ants Go Marching while making these adds to the fun.)

They had a great time playing with the pictures and retelling the story with beanie dogs and more cut out picnic food as props, which is excellent beginning narration practice.

For B week we learned about butterflies and birds, using favorite picture books. The girls are learning to identify the different birds, and we talked about feathers and beaks and nests and eggs and all the yucky things birds eat. Kateri said, "I don't eat worms, I eat regular food." Me too.

 

B is for Big Beautiful Smile!

Happy Father's Day!

 

Eliza was all over her Daddy at Mass this morning.

 

She was hugging and nuzzling and snuggling and loving him while grinning her little grin that makes her eyes scrunch up and disappear and you think her cheeks are going to burst from grinning so hard.

 

Just being with her Dad made her so happy that every time I caught her eye she just burst into gleeful giggles. We had trouble keeping her quiet in church - she was too happy. It is quite likely that she is so delighted to sit with her Daddy and just love him for an hour every Sunday, but as it is Father's Day I was sentimentally paying much closer attention.

 

Being a most wise judge of character, Eliza has chosen her Daddy as her most favorite, most loved person in the whole wide world. She knows how good he is, and how much he loves her, and her face just tells it all about him. I don't think there can be anything that makes a mother's heart happier than seeing her husband and children love each other. Father's Day is a beautiful day for just basking in that love.

 

(On top of all that, the dude hit a home run at the church picnic.)

Wordless Wednesday: Always Kiss Me Goodnight

 

 

 

(I do know it's really Thursday, but I took the pictures last night.)

A Few More Alleluias

As the Easter season is drawing to a close with Pentecost just a week away, I thought I'd share Eliza leading the Regina Coeli. She's quite a spirited prayer leader. ;-)

Photo and video editing at www.OneTrueMedia.com

The Regina Coeli is prayed three times a day, replacing the Angelus during Eastertide.

Queen of Heaven, rejoice, Alleluia!

The Son whom you merited to bear, Alleluia!

Has risen as He said, Alleluia!

Pray to God for us Alleluia!

Rejoice and be glad, O Virgin Mary, Alleluia!

For the Lord has truly risen, Alleluia!

Let us pray: O God, by the resurrection of Your Son, Our Lord, Jesus Christ, You have deigned to make glad the whole world. Grant we beseech Thee, that through His Mother, the Blessed Virgin Mary, we may obtain the joys of eternal life. Through the same Christ Our Lord. Amen.

Eliza follows this with the table blessing:

Bless us, O Lord, and these Thy gifts, which we are about to receive, from Thy bounty, through Christ Our Lord. Amen.

And she concludes with:

May the Divine Assistance remain always with us, and may the souls of the faithful departed, through the mercy of God, rest in peace. Amen.

Deo Gratias

 

Can you guess the occasion of this little celebration today?

 

Every year on this day we set out this little picture of St. Faustina, and we dig out the horse-who-looks-like-a-giraffe, and we make heart shaped cookies.

 

And we celebrate this very special little lively girl.

 

And we remember and relive so many moments of that incredible time.

 

And we marvel in wonder and we laugh and we cry.

 

Five years ago today Eliza had her open heart surgery. St. Faustina's picture was in the hospital bed with her. The nurse's liked to use the horse, which arrived in the mail as a gift the night before surgery, to help position her respirator tubes.

 

Someday soon I hope to write more about that amazing time in our lives.

 

But today is just for rejoicing and thanking God. All day.

Praying the Rosary with Little Ones

Eliza loves to pray our family rosary. She has come a long way in learning all the prayers since I wrote this post about her earlier prayer attempts, but just like when we pray the Angelus, she does like to be the leader. However she can't possibly keep count and pray at the same time. A while ago Michael got out our rosary with giant wooden beads, but even that is too difficult because as anyone who has tried to teach a little person to use a rosary knows - if you let go of the beads you've lost your place. So the other night as I watched Eliza I thought to myself, there has to be an easier way. I thought if she had counters that she could move from one place to another, she wouldn't lose count. I tried getting out some milk caps but she wasn't really interested in them, as she associates milk caps with letters and spelling, not praying. I thought she should have something lovely and pleasant to count with, and something unique just for praying the rosary. I thought about it just a bit more and realized it had to be roses for Our Lady!

So the next day I crocheted a set of roses, ten red for the Hail Mary's and one white rose for the Our Father's. I found two similar sized handle baskets, as little ones love to carry things around, and arranged the roses in the basket. The idea is very simple - they start with all of the roses in one basket and as each prayer is said a rose is moved to the other basket. When the next decade is started the roses get moved back to the first basket and so on.

I also printed out a set of cards with pictures of the mysteries, and laminated them for durability. I put numbers on each of the cards using little squares of paper in symbolic colors:  pink for joyful, purple for sorrowful, white for glorious and yellow for luminous. I think these will help the little girls to learn the mysteries, as they hold the proper card for each mystery we pray.

I thought this was a nice idea, but still I was surprised and delighted at how much the little girls love praying with these roses. Kateri is so pleased to be in charge of moving the roses from basket to basket, carefully arranging them with each decade. With something to keep her hands occupied and her mind focused, this bouncy two year old was happy to sit still for the entire rosary, and so proud to have such an important job.

 She is thrilled to have the cards to hold as well, and she shows everyone the picture as each new mystery is announced. Now when someone says it's time for the rosary, the little girls gleefully run for the basket of roses for Our Lady. I trust Our Dear Blessed Mother is pleased with her bouquet from these sweet little ones who are learning to love her and to pray always for her intercession.

 

Resources:

The rosary cards are found here: Rosary Cards pdf generously provided by The Bookworm.

The pattern I used for the roses can be found here: http://www.lionbrand.com/patterns/chs-rosettes.html?noImages= I believe you have to register at the Lion Brand site to use it, but it's free. I used Red Heart Super Saver worsted weight yarn - about 5 ounces of red for the ten. I used an I hook (5.5mm) and started with a chain of 35 stitches.

If you don't crochet or know anyone who does, you could purchase faux roses from the craft store. 

God Doesn't Make Mistakes...

We've always known this, we've been blessed by doctors who know this, and I know you know too, but you just have to watch this:

Grand hat tip and bow and giant Thank You to Cheryl.

Little Learners

A recent question in my inbox inquired about Eliza's developmental activities. Here are some photos of what my two littlest learners have been up to this past week. It was 'B' week and so painting Bb's was in order-

Blue, naturally.

 

We use various printouts from favorite sites like abc teach, Enchanted Learning, and First-School. I save the leftover paper strips from cut outs and they are perfect for beginning practice with scissors. Here Eliza is using spring loop scissors, similar to these.

 

I found this Bottle Top Names activity at the Tools for Tots site via Joann at Ten Kids and a Dog, whose Tot School posts are always a delight. You have to love a manipulative that uses something as simple as cardstock and our infinite supply of milk jug tops!

Both girls love to spell with these cards. I think I will add stickers so help with the word identification, although both girls already recognize their names and most of the other words on the cards. I didn't want to have the messy job of tracing the bottle caps with a sharpie so I made up templates to print out. They took a bit of fiddling to get the circles sized and spaced correctly, so I thought I would share them to save others the trouble. There are various words as well as blank circles that you can fill in.

Download Milk Cap Words (click on 'auto-rotate and center' before printing so they will be landscape)

 

And lastly, you can see a glimpse there of the lovely Elsa Beskow Wooden Box Puzzle set that Eliza got for Christmas, along with the quite challenging Elsa Beskow Cube Puzzle. Both girls really love to work wooden puzzles, and the pictures on these are so sweet (you've probably seen the puzzles over at Jenn's as she has the same ones!).

And of course around here, all this learning has to take place while we listen to music, such as this delightful ditty-

I'll write and I'll draw and I'll spell you a word,

Big 'A' and a little 'A' and a middlesize 'A',

I'll make you a number 1, 2, 3 and 4,

and I'll scramble them around so you can see them run.

Take my pencil, crayon, and brush,

big 'B' and a little 'B' and a new kind of  'B',

I'll spell ten kitcats up in a tree,

and squish them around you can see.

-Woody Guthrie as heard on Eliza's new CD, Songs to Grow on for Mother and Child

She's Five!

 

Sweet little Eliza turned five today! She was so excited all day, and she read her 'Happy Birthday Eliza!' signs over and over in delight. Her mood was positively jolly as is most fitting for a birthday girl. Balloons and singing and candles and presents - she loved it all. She is so dear and so charming when she's happy - it is sheer joy to be able to please her and be swallowed up in her infectious glee.

   

She was thrilled with her Pickles cake and card, made with lots of love by Lydia. 'Pickles Fire Cat' as she calls it is currently her most favorite book, which Daddy lovingly reads to her each night in its entirety. Lydia gave Pickles nice big paws so he can do great things.

 

I wrote about some of her birth story last year.  We are so thankful she is here and happy and healthy and has blessed us with another year of her special, precious self. We really just wanted to eat her up all day, she was just so cute.

Happy Birthday Eliza! We sure do love you!

Christmas Play

And it came to pass in those days that a decree went out from Caesar Augustus that all the world should be registered. So all went to be registered, everyone to his own city. Joseph also went up from Galilee, out of the city of Nazareth, into Judea, to the city of David, which is called Bethlehem, because he was of the house and lineage of David, to be registered with Mary, his betrothed wife, who was with child.  So it was, that while they were there, the days were completed for her to be delivered. And she brought forth her firstborn Son, and wrapped Him in swaddling cloths, and laid Him in a manger, because there was no room for them in the inn.

 Now there were in the same country shepherds living out in the fields, keeping watch over their flock by night.

And behold, an angel of the Lord stood before them, and the glory of the Lord shone around them, and they were greatly afraid.

Then the angel said to them, “Do not be afraid, for behold, I bring you good tidings of great joy which will be to all people. For there is born to you this day in the city of David a Savior, who is Christ the Lord.

. 

And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger.”

And suddenly there was with the angel a multitude of the heavenly host praising God and saying: “ Glory to God in the highest, and on earth peace, goodwill toward men!”

So it was, when the angels had gone away from them into heaven, that the shepherds said to one another, “Let us now go to Bethlehem and see this thing that has come to pass, which the Lord has made known to us.” And they came with haste and found Mary and Joseph, and the Babe lying in a manger.

Now when they had seen Him, they made widely known the saying which was told them concerning this Child. And all those who heard it marveled at those things which were told them by the shepherds.

 

But Mary kept all these things and pondered them in her heart.

 

The children participated in two performances of the Christmas play; they oldest three as musicians and the younger four as angels. On both occasions, the Baby Jesus was accompanied by His very own sweet little self-appointed guardian angel named Eliza. At the first performance she planted herself right beside the manger where she knew the baby doll was hiding, and somehow at the right moment she presented him to the Blessed Mother. Which seemed quite fitting. At the second performance she again staged herself right at the manger. The girl who played Mary put the baby doll in the manger, and this seemed to displease Eliza. She kept patting the Baby Jesus, rearranging his swaddling clothes, trying to give him back to his mother, and she would not leave his side.

 

Both times, as soon as it was over she quickly scooped the Baby Jesus up in her arms, and then she was happy.

  

Made me cry both times too.

Just Eliza,

just because I think she's beautiful.

 

 

 

 

 

 

 

Wordless Wednesday: Eliza and the Paint

 

 

 

signing dirty

Wordless Wednesday: Kissing His Feet

Sarah!!!

Guest blogger:  Michael.  (Kimberlee is busy with Saturday Night Bath.)

How would you feel if you had to spend over an hour waiting and walking in a line that was over a half mile long?  And this after first walking from the car to the front of the line, following your way along the line, around corners that always promised to be "the end of the line", until finally reaching the end of the line - which happened to be near the car?  We were thrilled!   And so was everyone else standing in line for the rally with us.

 

The show of support for Sarah Palin was overwhelming.  The people in the line were genuinely friendly and cheerful - happy that McCain/Palin has not given up on Pennsylvania, in spite of the polls.  This is, after all, the state that elected pro-life Democrat Bob Casey and pro-choice Republican Tom Ridge to the Governor's office.  This is truly a battleground state, even though polls show Pennsylvania as being as "blue" as California right now (ha!).  Other than the cities, particularly Philadelphia and Pittsburg, the state is very conservative.  This is a state where Catholics can make a difference, if only they can be made aware that Barack Obama has a radically pro-choice view of the world, and that John McCain and Sarah Palin have both demonstrated their personal and political commitment to a culture of life!

There were, of course, protestors along the way.  All of them (I counted 20, plus two dogs) are shown in the photo below.  People in line were amused by the red sign in front of the protestors :-)

The protestors were not a happy lot, as you can see from the signs that they carried.  But the media was there to get "both sides of the story" - the 20 protestors, and the thousands of supporters of McCain/Palin!

We were in time to hear some of the live musical performances - minus Jonathan's stainless steel thermos that looked too much like some type of explosive device.  (We missed the hot tea!)  For some reason, most people packed the seats in the stadium and did not go down to the field.  After sitting in the stands for about a minute, we went down to be in the middle of things!

Eliza danced on the round tarp that covered home plate:

From time to time, she would take a sign (the thing to do at a rally), and walk or sit with the sign until she decided it was time to dance again!

Here is Eliza holding a big sign, apparently the center of the whole show.

The "center of the show" was, of course, Sarah Palin, who spoke from a podium at first base.  Her standard stump speech was well received.  Lines about "drill, baby, drill" and promoting "clean coal" (certainly a big issue in these parts) were applauded, but not with the same enthusiasm that Sarah got when she started talking about Special Needs children.

 

At this point in the speech, Sarah Palin actually pointed to our signs, which Kimberlee had made at 1 AM.

Here is the text of the pro-life part of Sarah Palin's speech:

John and I have talked a lot about the missions that he’d like me to focus on with him and ... government reform, energy independence being top of the list, but another mission too he’d asked me to lead on.  I’m so honored and privileged to be able to do so.  That’s an issue that is close to my heart and that’s to help our families who have children with special needs.

It was a Pennsylvania governor, Robert Casey, he was asked how society should treat those who are most vulnerable among us, including children with special needs, and the governor said, “It’s simple - you put them first in line.”  Governor Casey understood that children with special needs can inspire a special love, and I am convinced that that is a love that our country needs more of.

These children are not a problem, they are a priority.

We need to show them the good heart of America.  You know as Governor I have sought more funding, succeeded there in funding for our children in our schools with special needs, but we’ve got to do more than that in showing that good heart of America.  As Vice President I’m going to make sure that these children, that all our families know that they have a friend and an advocate in the White House.

That is important to John McCain and to me because we have a vision of an America where every child is cherished and life is given a chance. 

Thankfully we have pro-life candidates who share our most important values.  It is great to be able to take our children to a political event every four years, to develop within them a desire to be a part of the political process in America.  And thankfully Kimberlee will not have to run for President or VP this year, as suggested by some commenters to a previous post.  There is already a pro-life young mother of many children, including a special needs child, who is on the ticket!

After the rally, Eliza was happy to make "angels" in the perfectly-grained dirt between the bases while the rest of the family tried to get as close as possible to Governor Palin.

 

Kimberlee and the girls (minus Eliza) got very close, but not quite close enough for a hand shake or an autograph.  Sigh!

 

Mary Rose was very disappointed that she did not get to meet Sarah Palin.  I told her that if she wants to, maybe Mary Rose will one day be President.  And then we will all be able to shake her hand, hug her, and sit down together for tea!

 

I Just Have to Say

You should have seen her! She jumped a foot off the ground!

So said my daughter, recounting to her brother my reaction to today's news.

She was bouncing all over the place!

And so I was, with tears in my eyes as well. I cannot overstate my joy at McCain's pick of a truly pro-life running mate. Jonathan just thinks I'm brilliant because just yesterday I was telling him how McCain should pick a strongly pro-life woman. How did you know, Mom?

I didn't know. All I knew was the mentioning of various potential candidates by the media was making me ill.

It is so rare to have a truly pro-life candidate; one who you can believe really cares about the issue. Sure there are plenty of politicians who say they are pro-life but it seems like they are just repeating the words to toe the party line. And sadly there are even clergy who seem the same way - giving a nod to the pro-life cause but so half heartedly they seem to be just toeing the denominational line. And here we have a woman who believes babies are blessings, unlike Obama who has referred to them as a punishment. That's quite a contrast.

This pro-life candidate is a woman. And she is a mother. She knows that all that mumbo jumbo talk about choice and a woman's right to her own body has nothing to do with anything. She knows that the issue is all about someone else's body. A little tiny body straight from the hand of God and tucked away safe inside to grow and to be born into this world to be cared for and loved. Sarah Palin knows this and understands this because she is the mother of five children. She herself has experienced the swelling, full womb and the joy of the leaping baby within. She has known the exuberance of giving birth and bringing new life into the world, again and again. She has experienced this great gift from God and she sees children as the blessings that they are declaring:

 Children are the most precious and promising ingredient in this mixed-up world you live in

But even more than that she is the mother of a special needs child, a child with Down syndrome. I can't describe the thrill I feel at the thought of this woman being nominated for the second highest office in our land. Having a special needs child was easy for me to accept. My Eliza was made by God and He made her exactly the way He wanted her to be. What is very difficult to accept is how the vast majority of the rest of the world sees her - completely unworthy of life. But Sarah Palin is not like the rest of the world. She recognizes the gift from the hand of the Creator. She has described her special blessing like this:

we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.

She gets it. She gets life.

She believes it and she knows it and she lives it.

She knows it's not a choice - it's a child. A gift.

 

And she is in an awesome position to help the rest of the world see it too.

And that gets me very, very happy.

WHOO HOO!!!

Hip

Hip

Hooray!!!

Saturday Night Bath

Splashing in the tub the differences are so clear

One so rounded and robust, smooth white skin gleams head to toe

Smile of straightest teeth, straightest eyes, curliest hair

The other so slim with a body so straight, always mottled purplish pink as a sunset

Thick sweet neck and quirky toes that spell death for so many

But these two know nothing of chromosome counts

They take no notice of the thin white telling line

They splash and play and swim

Naming the floating letters

Standing up in turns to pour a waterfall on the other

Both exclaiming, Me again, do!

In voices sounding so alike

Yet different He has made them

Each perfect in her own way

They are sisters

From His hand

I am so thankful

They are mine.

Words, Words, Words

What has happened to my little babbling baby? Or even my spirited toddler who says "No!" to everything anyone says to her? Kateri is speaking in these giant grown up sounding sentences with ridiculous parts of speech. What does a two year old need articles and pronouns for? It's quite startling to hear this little person say-

Mom, I need a tissue.

I don't know where Eliza is.

Mom, I can't find it.

I need a diaper.

At least I have Eliza to console me with cute talk. She has caught on to her parents' first names and playfully calls my husband Dada Michael. But she still has a bit of trouble pronouncing my name.

She calls me Mama Broccoli.  :-)

Rosary Love

 

Tonight during the rosary Eliza didn't want to sit still. She wanted to make the rounds. As each person took a turn leading a decade, Eliza had to go and sit with each one. She would eye the next person, smile her enormous grin that makes her eyes scrunch up with downy sweetness and her rosy cheeks look like they are going to burst with glee. She would give a little knowing giggle, like she was so pleased with her cleverness, and climb up on the next person. Each recipient of this Eliza love would invariably melt slightly as she scaled their legs and snuggled in close for a cuddle and squeeze.

She spread her special charm all around the room, secure in the knowledge that we are her family and we are here and always ready to love her and snuggle her and share our laps and hugs. She drinks in our love and fills us all up with hers. It's a delightful exchange. 

Lovely Mud

In honor of Mud Season I present Eliza 'reading' Mrs. Wishy Washy. (Just click on the little 'play' arrow at the bottom.)

:-)

6/30: Eliza in Macro Mode

Pardon me, but you have no idea how hard it was to choose just five! 

Divine Mercy Sunday

O Blood and Water,

which gushed forth from the Heart of Jesus as a fount of mercy for us,

I trust in You!

Here's a 'vintage' picture from Divine Mercy Sunday four years ago:

I've explained how Eliza was baptized the night she was born, but she had her baptism 'completed' and received her anointing on Divine Mercy Sunday when she was four months old. It was very special to have this ceremony on this day so important to us, and I held a relic of St. Faustina clutched in Eliza's hand as she was anointed with the holy chrism. Divine Mercy Sunday was 'coincidentally' the only day that our priest and the godparents and my family were all available to have this done before Eliza's upcoming heart surgery. We had forgotten to plan ahead and order a cake for a little bit of celebrating. When we called the bakery just before 3 o'clock on Saturday afternoon they said they were just about to close, but offered to keep the store open until we arrived to purchase the cakes!  Eliza's life has been filled with innumerable moments of Divine Mercy, large and small.

The devotion to the Divine Mercy was revealed by Our Lord to St. Faustina, a Polish nun who lived from 1905-1938. A simple, uneducated girl, she was lead by the Lord to give up her worldly life and enter a convent. She subsequently received numerous visions of Our Lord who instructed her to have a painting created as a visual representation of His mercy, showing the rays of Blood and Water issuing forth from His Heart as a fount of mercy for all, and with the words Jesus, I trust in You. Sister Faustina was to be His "Secretary of Mercy', and she was to record all that the Lord was teaching her and share it with the world so that all may come to His mercy. She faithfully recorded the story of her soul and all of her interactions with Our Lord in her diaries.

It was then Cardinal Karol Wojtyla who opened the cause for Sister Faustina's sainthood and he was instrumental in arranging for the diaries to be properly translated. From the beginning of John Paul II's pontificate he saw himself on a mission to spread the message of God's infinite mercy. He wrote an encyclical on mercy. St. Faustina was beatified on April 30, 2000 and Pope John Paul II declared 'this is the happiest day of my life'. As our homilist pointed out today, the message of mercy is really the message of the Gospel as so succinctly summed up in John 3:16- For God so loved the world that He gave His only begotten Son, that whoever believes in Him shall not perish but have eternal life. There are five aspects to the Divine Mercy devotion; the Image, the three o'clock hour, the Feast of Divine Mercy, the Chaplet of Divine Mercy, and the practicing of works of mercy. Read more about John Paul II and Divine Mercy here. General information can be found at The Divine Mercy website, with a timeline of St. Faustina's life here.

The Diary is a lengthy tome but it so very rich and inspiring to read. There is also a book of excerpts  from her diary, broken down into daily readings. There are so many beautiful images and quotes from St. Faustina's writings, but I think one of the most astounding is Our Lord's words referring to His ocean of mercy. When we visited the sea last fall I sat on the beach and meditated on these most precious words. The ocean is such a sight to behold - we stand before it and try to imagine it all - how big it is, how deep it is, how it seems to just go on forever. No amount of water removed could make a dent in its vastness. The waves just keep coming, lapping onto the beach with gentle regularity, sometimes with more force, always receding quietly to rejoin the waters from which it came. Nothing can stop the waves; nothing can take anything away from them and each wave takes nothing from the ocean. That's what His infinite mercy is like. An ocean of mercy, and He calls us to immerse souls in it.

Today we attended the Divine Mercy program at our cathedral. This is always a beautiful gathering for Adoration, confession, chanting the chaplet at 3 o'clock, prayers, reflections, a homily and closing with Benediction. We arrived right at 3; the plan being the littles would conveniently nap (don't laugh). Kateri fell asleep on the way there but then woke up when I took her out of her car seat. She continued to fuss and cry and wrestle and scream for 45 minutes or so in the sling, completely inconsolable. I was really getting tired of pacing in the vestibule, trying to keep her quiet, and she was so tired and miserable. I am very grateful that God sent me an angel of mercy before the Hour was up- a kindhearted Maw Maw from Oklahoma who came to my assistance. She walked over to me and patted Kateri, who immediately settled down with her head on my shoulder, resting peacefully. Until Maw Maw left. So Maw Maw came back and stood next to me chatting in hushed tones for quite some time, all the while rubbing Kateri's back until she fell sound asleep. I made it inside just in time, last in line before Confessions ended! May God richly bless Maw Maw for her kindness.

Wordless Wednesday: Fine Motor Skills

To Cheer You

Splashes of happy color fresh off of Eliza's paint brush -

Girl in a Purple Dress

Puppy Dog

Kitty Cat

They sure make me smile on this dripping, grey day we're having.

Sick and Back Again

I walk down the hall carrying my clipboard of med sheets, thermometer and box of assorted drugs. I glance at the name on the medication bottle, making sure it matches the name on the door. I knock quietly, announcing myself as I enter the room, "I'm your night nurse and I'm here to check your temperature and give you your meds."  "Would you like a compress for your eyes? Is there anything else you need? Goodnight. Sleep well." I jot notes on my paper and move down the hall to the next room.

This isn't some sort of flashback to my night nurse days. I do after all kiss each patient goodnight (well, I rumple the hair of the male ones), and the young ones giggle while the big ones smirk at the routine. This is a snapshot of life around here the past ten days or so as we've all been rather ill. I think I've finally stopped coughing enough to be able to type and even make sentences.

The essentials: thermometer, Tylenol, holy water, honey.

And this time last Sunday we were in the middle of our nine and a half hour marathon visit to the Emergency Room.

Eliza had been enduring a nasty cold, but it hadn't really affected her behavior. In fact, I had planned to take Kateri (who had been running a fever) and her in to the pediatrician on Saturday morning, but when they woke up afebrile and were happily singing and dancing around together I changed my mind. On Sunday Eliza woke up her usual jolly self. I put Rachel on and was getting her yogurt ready when she suddenly got all weird - there's no other way to explain it. She sat down and started to cry and wanted me to hold her and she clung to me alternatively whimpering and sobbing. It was very sudden and very strange and very scary given her cardiac history. When I tried to put her back down she wouldn't stand but sat down crying. The only clue she gave us to her ailment was to say 'knee' while she rubbed it sorrowfully. But it wasn't like she could have injured herself, as I was with her the whole time. Michael came home from church just then and I gave her to him and he was surprised at how limp she was, not even lifting her head to greet him. He really started to worry when he realized she would not even turn her head to look at Signing Time. Her condition did not seem to be improving so we dashed her off to the ER. She whimpered and moaned and cried for the whole ride, rubbing her knee, totally pathetic.

At the ER they x-rayed her knee and leg and also her chest to rule out pneumonia. When they tried to make her walk she cried and limped. Her blood counts and electrolytes were normal. They gave her IV fluids as she was somewhat tachycardiac and dehydrated. She was examined by a parade of doctors who took their turns trying to figure out what was wrong. Her knee x-ray did show a small abnormal area, so orthopedic doctors were brought in for consultation. They feared an infection had settled in her bone- quite a serious condition.

During all of this she remained a limp dishrag; her sad little body conformed to her dear Daddy's big strong one. If Michael tried to adjust or reposition her even the slightest bit she would wake up and cry. After many hours like this he was finally able to put her down. She sat on the bed and looked at a book, the most active she had been all day. But it wiped her out and she fell back to sleep. After a time she woke up again, and this time she really started to perk up. She had some yogurt and started talking. She colored and chatted with Kateri. She got out of bed and was able to walk fine, investigating the room and even kneeling down to peer under the cupboards. She didn't appear to have any type of pain or discomfort at all. It was evening by now, and the doctors wanted to admit her and observe her overnight and do a MRI on her knee in the morning to investigate further. She really surprised them when she went padding down the hallway, all smiles, as they stood there writing up her admission papers.  As they weren't planning any treatment for the night they agreed she could go home and come back in the morning for the MRI. We were overjoyed to take home our happy, smiling girl.

On Monday our pediatrician put Eliza on antibiotics for a sinus infection and tonsillitis, but she thought the knee problem was most likely a benign bone cyst. If she really had osteomyelitis (bone infection) the knee would be red and swollen and far too painful to walk on, but Eliza has had no further knee pain. She has been feeling better every day and is now back to her happy, active self.

Kateri had started spiking fevers again, so she was put on an antibiotic and is now mostly recovered from a nasty croupy cough. The older children just had regular cold symptoms and low grade fevers. The big girls all had the added infirmary of conjunctivitis. Not the pink-itchy-watery-eyes kind, but a horribly-bloodshot-very-painful-terribly-swollen-eyelids- kind. And I was sick too on top of it all - very unusual as I can't even remember the last time I've been sick. So we were a sorry sight and sound - Eliza, Kateri and I waking every hour or two throughout the night to sit up and cough together. Kateri lived in the sling for a solid week. You know what it's like - thermometers and Tylenol and tissues (one day Josiah used 172 of them - he was so bored just blowing his nose all day he counted) and orange juice and trying to get sticky medicines into screaming coughing babies and your brain is a blur of thoughts held together only by one long never ending string of Memorares winding through it all.

I almost forgot the other exciting part. On Tuesday they called from the ER to tell us Eliza's blood cultures were positive and we should bring her straight back to the ER for IV antibiotics. The doctor who called must not have known her history, because when he heard she was already on a strong oral antibiotic he thought that was adequate. We called our pediatrician to let her know, and she promptly sent us to the cardiologist for an echocardiogram to check things out. This is where my nurse brain and mommy brain collided in a most horrible melange of thoughts and fears; terms like acute bacterial endocarditis and septicemia whirled through my brain while I visualized bacteria colonizing on the leaflets of Eliza's little makeshift mitral valve. But her cardio exam proved totally benign and the doctor felt the cultures must have been contaminated as Eliza had no physical evidence of such a serious infection. We practically jumped up and down in the office as the cardiologist declared the situation a "false alarm."

We are finally (almost) all better! It could be tempting to be frustrated that we really don't know what was wrong with Eliza last week but we are just so thankful that whatever it was, it has resolved and she is well. Michael and I were completely overwhelmed with gratitude last Sunday when we got home and found that so very many dear blogging friends had been praying fervently for her, as well as countless others who read those posts. The Lord is kind and merciful and we are ever so grateful.

One thing is certain, Michael and I will not soon forget the picture captured only in our minds of sweet little Eliza sitting on the hospital gurney.  Several times throughout our stay she spontaneously folded her little hands as best she could with the awkward IV board, bowed her fatigued little head and said 'pray', and then recited the Hail Mary. (She's improved quite a bit, and can say about every other word now.) It was too precious, and I believe Our Lady surely did hear her and everyone else's prayers.

I will end this already too-long post with this most appropriate prayer of thanksgiving sent to me by dearest Alice:

"O Jesus, eternal God, I thank You for Your countless graces and blessings. Let every beat of my heart be a new hymn of thanksgiving to You, O God. Let every drop of my blood circulate for You, Lord. My soul is one hymn in adoration of Your mercy. I love you, God, for Yourself alone."

--from Saint Faustina's diary

Jonathan takes back-to-her-smiling-self-Eliza outside for her naptime walk. She's waving her thanks for all the prayers!!!

Can You Sign 'Merry Christmas'?

If not, let Rachel show you how:

We've been having fun learning to sign Christmas carols, as Eliza loves to sing and sign. Find some familiar songs here  (some, but not all, of these have vocalization as well). Or you can watch an ASL class singing and signing many favorites here.

Have fun!

Happy Birthday Eliza!

Our Eliza sweetie pie is four years old today!

As with any child's birthday, it's amazing to think of how the years have flown by and yet it's also hard to remember what life was like before having her.

But I do remember. I remember well the dreadful pain and sorrow that so many of us know far too well of losing a little one to miscarriage. And the deep dark place I was left in as we waited and longed so for a new little one to join us on this earth. I remember pleading with St. Faustina as I was blessed with her relic on Divine Mercy Sunday. And I remember the exceedingly great joy when after a year and a half of waiting we were finally found to be with child. I remember the phone call in which my doctor told us our little one had a heart defect and likely had Trisomy 21 as well. I remember hanging up the phone and saying to Michael, "Honey, we're goin' to Holland!" And we waited with wonder that we had been chosen for this special task and curiosity to see what this baby with a little 'something extra' would be like.

We had six ultrasounds in all but we never peeked to see if we'd be having a boy or a girl. I so wanted a girl as I knew this special one would need lots of extra care and attention and would be closest in age to three big sisters. But my doctor had once referred to baby as 'he', and though she denied it, I thought she knew something I didn't. As my due date approached we decided to induce via amniotomy as we really wanted this baby to be born in the hospital (unlike Mary Rose) in case special care was needed. I went in at seven in the morning and my doctor thought for sure I'd have a baby by noon.

Not so. I was doing marathon speedwalking up and down the hospital corridors for hours, pausing and pleading every time I passed the statue and relic of St. Gerard in the hallway. At around 2:30, as the Hour of Mercy approached, it began to gradually dawn on me in my foggy-brained state that perhaps there was some chance we were going to have a girl. Our little Elizabeth Faustina arrived at 3:44! She didn't make a peep but she was pink as could be. We were all overjoyed to have her here!

I had made this tiny white hat for the new baby, with a blue pompom tied on the top and a pink bow on the front. We whipped that blue pom right off and put the little hat on our little pink princess.

Our wonderful pastor kindly came out that evening to the hospital to baptize her.

I always say that's one baptism I remember what the baby's mother wore (and no, you can't see a picture of me in my blue bathrobe). Other than briefly turning blue and scaring her mother and nurse, she did quite well that first night. We took her to the nursery so the nurse could keep an eye on her. I remember sitting in the rocking chair with my little silent baby, watching the nurses change and feed and try to soothe the other newborns as they bleated and wailed and shrieked their displeasure at the cruelties of life outside the womb. My little one had no energy with which to cry. Or nurse. I would work so hard to get her to latch on, only to have my triumph dissolve as she fell back to sleep after a minute or so. One nurse remarked about my determination as I held Eliza's little chin for guidance, "She'll get it," she encouraged. She sure did.

Miss Eliza, Queen of Cuteness, has certainly come a long way since her first night in my arms. She certainly has plenty of energy now. She is such a special blessing in so very many ways. She makes people happy every day just by flashing her infectiously joyous grin and adding a squeeze of a hug for good measure. She keeps us lighthearted. She makes us laugh. She makes us pray. She so clearly makes known the wisdom and love and generosity and goodness of her Creator. She makes us so very thankful for this very special gift that she is.

Happy Birthday, Eliza! We sure do love you!

Gloria In Excelsis Deo! (a little early)

We have all been enjoying  Martin Doman's new Christmas CD, Emmanuel. It's a live recording of last year's Christmas concert. There's just something about the jubilant music, the joyful singing, the sax-playing Franciscan...

Eliza loves it.

Angels We Have Heard on the Coffee Table High!

Special Blessings, Special Vocabulary

Eliza!

When a family first receives the news that they may have a child with Down syndrome, they are likely to encounter some new vocabulary not previously part of their everyday lexicon. Over time these new, unfamiliar words lose their cumbersome feel and become a comfortable part of everyday life, much like an unyielding new pair of shoes softens and grows familiar. I thought I would explain some of these terms and what they have come to mean for our family.

Nuchal fold - This is the delicious area of skin at the back of the neck that is extra thick and soft and smooshy in children with Down syndrome and therefore the perfect place to snuggle, nuzzle, bury-your-nose-in and cuddle your sweet baby. Michael says it's his favorite spot to kiss Eliza.

Trisomy 21 - Trisomy means there are three copies of each chromosome instead of two, and it has been discovered that cuteness is located on the 21 st chromosome. Be prepared for unprecedented levels of cuteness, even if you have many other children who you think are cute.

Hypotonia - Sometimes referred to as poor muscle tone, what this really means is that all of Baby is super soft and cuddly. Synonyms for this condition are smoosh-ball, teddy-bear, snuggle-puss, honey-love, and so forth. Squeezing and hugging Baby is a frequent and irresistible temptation.

Short stature - Children with Down syndrome are typically short in stature due in part to short limbs. This just means parents and other loved ones will have abundant opportunity for exercise in the form of deep knee bends.

Speech therapists- This is another word for siblings. These are the professionals children who will spend countless hours teaching your child with Down syndrome to talk and speak clearly. They will mimic sounds, invent oral exercises, play word games, demonstrate proper mouth movements,  repeat key phrases, practice letters and numbers and loads more ad infinitum. Some therapists have unique methods such as requiring the client to say, 'Guard, release the faun!' in order to have the car sear unbuckled or repeating unusual words like 'gastrovascular', but you have to just put up with their quirks.

Developmental delays - What this really means is that for once you don't have to say, 'Oh, they grow up so fast!' The delight of babyhood and toddlerhood is prolonged and there are ever so many more moments of it to savor. Baby will grow and learn in a slow and gentle manner and there will be plenty of opportunities to practice cheerleading along the way. You will also marvel and appreciate each little milestone that you may have taken for granted in all of your other children.

Congenital heart defect - This is really one of several code phrases for an intensive training course in learning the true meaning of Jesus, I trust in you. This training involves great spiritual growth and opportunity for deepening and greatly magnifying one's prayer life. There may even be a special retreat involved where one can really progress in prayer. The special code term 'open-heart surgery' is often used for this unique retreat that takes place in a hospital.

Special needs child - All children are special and all children have needs. Both of these facts can sometimes be taken for granted, but that is less likely with special needs parenting. This child will force you to see things more closely to the way God sees things, which is very, very contrary to the way the world sees things. The 'special needs child' instantly and unequivocally obliterates the blather of the world's view of life. Each and every life is a precious gift from His hand, of equal value in His sight, and the special child makes that especially clear, every moment of every day.

L is for Lucy and Leah.

Eliza signs 'cute'.

Snuggle that girl good.

Big A

I thought it might be a good time to start teaching Eliza more about letters. She knows the alphabet and recognizes all the letters, so I wanted to start teaching her how to write the letters and what sounds each makes. I sat down with her the other day to try and show her how to make an A. I drew many A's while describing the process: up, down, cross in the middle. She went on drawing circles and faces with her marker, seeming completely disinterested and paying absolutely no attention to me. I'm thinking, okay so we're nowhere near ready for this letter-a-week thing.

So imagine my surprise and delight when the next day out of the blue she takes up her marker and starts writing A's all over her paper, gleefully repeating my directions with every letter: up, down, cross in the middle. She has since filled many pages with all manner of capital A's.

By George, I think she's got it!

Prayer Request

Sweet Muddy Mama has asked for prayers for this Sweet Baby who will be having heart surgery soon. One of the greatest joys of our Faith is joining together in prayer for those in need. When our Eliza had her surgery so many, many people prayed for her and it was such a comfort to us. Please keep little Erin in your prayers that her surgery is successful and without complication. Thank you, and I'm sure little Erin would thank you too if she could from the bottom of her soon-to-be-mended heart.

A Girl and Her Window

Girl at her window

Gazing closely at the world

Her wonder lights mine

Hi Nana! Thanks for the beautiful dress!

Special Blessings, Special Prayers

Here's a little quiz for you-

What is:

God...'mighty...heaven...earth...Jesus...Son...Lord...Spirit...

Mary...Pilate...buried.

Or try this easy one:

Queen...mercy...life....hope...cry...Eve...sighs...tears...

mercy...Fruit...Jesus.

How about:

Angel...battle...devil...pray...host...hell..spirits...world...

souls.

Amen!

Give up?

That's Eliza praying the rosary with us!

She started many months ago with just the Hail Mary, but now she knows many prayers. Her speech is such that she can't possibly keep up with all the words, but she follows along adding the last word or so of every line; all of the prayers of the rosary from the Apostle's Creed and Our Father all the way through the Fatima decade prayer, Hail Holy Queen and St. Michael prayer. It amazes us coming from a child who is still in the three-or-four-word-string stage has all of these prayers in her head. And she is not just repeating the words when we say them because she often gets them out before us.

She can follow along at Mass as well. She looks like she's just sitting and looking at her Treasure Box books, oblivious to what is happening around her. But she knows the Mass and knows it well. Even though we're currently in the Age of the Narthex most of the time for daily Mass, she still knows when it's time to kneel. She has a little trouble with balancing on her knees without a kneeler, so she just lies down and sweetly fold her hands.

She joins the priest in the words of the Consecration:

Bread...Body...eat...you.

She makes me think about what our beloved, elderly Monsignor once said. When he was a little boy, a long, long time ago, his mother taught him how to pray the rosary. She told him he had to know how to pray the rosary so that when he was sick or dying he would still be able to pray. How true it is.  When we are in an emergency and in need of immediate prayer, or when we are so distraught in spiritual, emotional or physical pain, and we cannot think to formulate a prayer or even articulate our needs and wants- we can still pray. The familiar words of the prayers hidden in our hearts come to our assistance, arising spontaneously from the depths of our souls.

Eliza is learning and treasuring these beloved prayers and practices of our beautiful Faith. Though she of course can't understand all the words, what matters is she has a heavenly Father who hears and knows and loves and understands her.  He made her the way she is and He receives her attempts to know, love and serve Him in her own unique way. And for us, her family watching her, that's pretty special.

Night-night, 'Ria!

We used to have a little Mary garden at our old house. You can see in this photo from a couple of years ago how Our Lady was a lovely presence at many a tea party, keeping the girls and their numerous babies company. But her blue paint had grown faded and chipped, and she was in need of some refinishing. She has been cleaned and a coat of primer applied, and she rests peacefully in the garage until the final work is accomplished.

Though Our Lady is in the midst of restoration, there is no lack of Marian devotion here. As is often the case, the little ones lead the way. Every night when Eliza comes in through the garage, she must bid Our Lady a proper good night. Fondly addressing (Ma)'ria, she gets down on the floor to kiss 'Ria, and then hug 'Ria.

Then she lies down on the floor next to her for one final last snuggle for good measure, putting her arm lovingly around Our Lady saying, Night-night, 'Ria. 'Ria sleep.

You can almost see Our Lady smiling back at her.