Bill and Ria - Sharing experiences about life, parenting, and Down syndrome

He Really Loves to Dance

2012-01-26T05:00:00.001-06:00

He walks on over to the iPod stereo and pushes the "on" button. The radio station is preset to one of the local ones with few commercials and generally (relatively) better music (no explicit versions). Whatever is on, it's usually music with a good dancing beat and Matthew is rockin' it! Matthew LOVES dancing and it seems like he'll dance for as long as I let him.

Almost all literature I've read about individuals with Down syndrome include "love for music". Maybe it's true for all, maybe just the majority - I don't know. But I definitely think it's in his genes because I love dancing too (and so does Elizabeth).

Related post:
Matthew Likes Jazz

Working with Scissors

2012-01-25T05:00:00.068-06:00

One of Matthew's IEP goals at preschool is:

Matthew will increase his visual motor integration skills as demonstrated by holding spring open scissors and paper with both wrists in neutral position, following set-up and cut on a 4" long x 1/4" thick straight, curvy, and zig zag line staying within 1/2" of the line for 75% of data days.

Accuracy is not important to me at this stage although it would be an indicator of any improvement in his hand strength and visual-motor coordination -- two factors that we view as important to be able to do more precise fine motor tasks.

We have two pairs of spring-loaded kid-friendly scissors at home - brands: Fiskars and Maped. We got both pairs from amazon.com then I saw a pair of the Maped brand scissors at the local Dollar Tree store. Other adaptive scissors are available from stores like TheraPro (search for scissors on their site), Beyond Play, and other specialty/ therapy stores. Matthew currently uses the spring-loaded scissors because he still has a hard time using a scissors manually (without the spring). Other kids at his developmental stage may or may not have the same issue. Everyone's different.

Just last quarter, he needed hand over hand help with using a pair of spring-loaded scissors. His hand strength has increased since then. He didn't want my help the other day.

He's not a pro yet with scissors but he's determined and keeps working hard at it. For him, success with it (with anything) is a confidence booster and becomes a self-motivator to do more.

Toy Review Tuesday: Pop-up Pirate

2012-01-24T04:54:00.032-06:00

Arrrr! Ahoy Matey!

This game is rated for kids ages 4 and up but even me 1-1/2 year old lassie, Elizabeth, likes to stick the swords into the barrel. It's another way to introduce basic colors and counting. Since Elizabeth is too young to understand the objective of the game, we usually make up our own game rules or simply have no rules except to have fun.

The plastic swords are a good size for pincer grasp practice for me 4-year old lad. The barrel doesn't stay put on the base when sticking the swords in so it presents a good opportunity to practice using two hands - one to stabilize and one to push the sword into the barrel. Aye, all hand hoay (all hands on deck) with this game!

Play time will depend on ye lads and lassies attention spans.

Savvy?

Waitress Mommy

2012-01-20T06:00:00.007-06:00

Grover is one of my favorite characters on Sesame Street. (I actually like him more than Elmo.)

If you grew up watching Sesame Street, you may remember Grover, the cute and loveable furry waiter, which was one of his many roles. The app called "Grover's Number Special", now on the iPad, iPhone, and iPod touch, brings him to life in this interactive game. Matthew is still learning to play this game. Tilt the device one way or the other to move the tray and catch and count the ingredients for the special of the day.

One evening, Elizabeth and Matthew were seated at their little table pretending to eat play food. I decided to bring "Grover's Number Special" to life and surprise my unsuspecting customers. I offered to bring food to their table and clumsily set the food down so it would land on the floor. Elizabeth was shocked at the mess I was making and Matthew thought it was funny.

Here's a short video of the app and my attempt at waitressing.

Matthew's List of Sight Words

2012-01-19T07:21:00.001-06:00

As of January 19, 2012, Matthew can sight read at least 439 words (see photos below). He learns an average of 9 new words per week, flashcard style. I use plain unruled index cards and write the words with a black marker.

We review several words daily. He's a strong visual learner so learning to sight read is easy for him.

How do I choose which words to teach him? I started with words that he heard daily and are of high interest to him. Then I downloaded Mrs. Perkins' Dolch Sight Vocabulary (220 most common English words). And finally, we got a list of 1000 most common English words from NACD. (Also google "1000 most common English words").

Wipe Your Chin Please

2012-01-18T15:04:00.000-06:00

Teaching Matthew independence starts with the little things - like wiping his own chin.

Matthew is generally neat and likes to be clean. But when eating, he doesn't usually sense if some food has strayed to his chin or cheek or nose. And when he does, it's not easy for him to pinpoint it's exact location. So we use a small acrylic mirror (won't shatter if dropped) to show him where he needs to wipe. It works flawlessly for my visual learner.

And it's quicker than just telling him verbally.

And it's a baby "I-do-it-myself" step.

Toy Review Tuesday: Birthday Cake (Melissa & Doug)

2012-01-17T05:00:00.005-06:00

Birthdays are a fun time for kids. Birthdays can also be a difficult concept especially for kids who may think it's their birthday at every party or kids who may be overwhelmed with all the activity and excitement and people.

The time-honored birthday cake ritual of singing "Happy Birthday" and blowing out the candles was a perplexing for Matthew when he was younger. He wasn't quite sure what to do about the candles until he was 3. And people singing the happy birthday song around him brought forth his lower lip with a downward curve. (Maybe he just thought everyone was off-key and that was upsetting to him??)

With many birthdays to celebrate in our family (with nearby relatives), playing with the Melissa & Doug Birthday Cake has completely helped him warm up to the birthday ritual. Both kids even like to turn the lights off after the candles are put on the cake. Then we sing the birthday song. The lights come back on for cake cutting and eating.

We like this birthday cake set because it is fun and durable. It also nice for counting, sorting, learning to follow directions, and imaginative play. I can see it used for simple sequencing also but we haven't tried it yet.

Integrating some more fine motor work into our birthday cake play, Matthew picks up candles and pieces with tongs.

Using Chopsticks

2012-01-16T15:36:00.000-06:00

Incorporating some fine motor work into our meals, we use training chopsticks from amazon.com (Fred Party People Chopsticks, set of 6) for some food at the table. There are other kinds of training chopsticks available but this colorful set looked like the simplest to use and easiest to clean.

We started with green beans.

Matthew picked up and transferred green beans from the serving plate to his using the training chopsticks. Then he ate them with his fork. Not wanting to be left out, Elizabeth got her own pair of chopsticks too. She used chopsticks, fingers and a fork.

We've been using ice tongs for Matthew to serve himself salad from the salad bowl. He really enjoys being able to do it himself.

Related post:
Toy Review Tuesday: Tongs

Conversation Book: Christmas Parties

2012-01-12T10:58:00.000-06:00

Here are some photos from Christmas. We went to a few parties and breakfasts with Santa. The kids got to see Santa Claus and have their picture taken with him on 3 separate occasions, at least. At one breakfast event, Santa Claus arrived on a big red fire truck.

TalkTools Straw #4

2011-12-07T21:22:00.015-06:00

"Use your lips, not your tongue." That was what I'd say when we started with Straw #4 in the beginning of June. I doubt many parents have to give their children specific (and odd) instruction on how to drink with a straw.

Straw #4 is relatively a shorter straw and has a smaller diameter than straw #3. The smaller diameter makes straw #4 a challenge. In the beginning, I used a lip block (as shown in the photo) to control how much straw tip goes into Matthew's mouth.

The lip block, which was positioned 1/4-inch from the tip of the drinking tip, was essential as a tactile prompt to seal his lips around the straw. Without the lip block, he sometimes shifted to suckling or wrapping his tongue under the straw as his natural urge is to let a longer straw tip into his mouth. A longer length of straw in his mouth (more than 1/4-inch) makes it easier to suckle.

Without the lip block, verbal prompts or reminders "use your lips, not your tongue" and my fingers positioned 1/4-inch from the drinking tip were necessary to get a similar effect as having the lip block in place. Then I re-read the instructions and learned that I was supposed to cut the straw close enough to the first loop so that the loop served as a lip block. So I cut the straw and did away with the yellow rubber lip block.

After 4 months of using straw #4, I have noticed better and stronger lip closure. Along with this physical progress, I have noticed clearer articulation of single speech sounds. Stringing sounds together is still a work in progress though.

I don't doubt that the straws have been helping Matthew develop a stronger oral foundation for speech but his progress in speech is really a combination of the right amounts of speech therapy, reading sight words, oral stimulation techniques (including use of the TalkTools straw kit), and articulation practice. Other oral stimulation techniques include using a z-vibe and offering food that require a lot of chewing or brings more awareness to the mouth such as pickles, grilled chicken, grilled steak, fresh cut apples, lemon sorbet, and so on.

Since the end of September, he easily and successfully (no leaking) drank 4 ounces of milk or juice with straw #4 in one uninterrupted sitting and with less prompting. He has moved on to straw #5!

Toy Review Tuesday: Don't Break The Ice

2011-12-06T22:26:00.001-06:00

The goal of Don't Break The Ice is to keep the polar bear on top of the ice for as long as possible. Players take turns tapping an ice block with the included plastic mallets.

Turn-taking is encouraged when playing by the simple rules of the game. My kids prefer a free-for-all game. The faster they can tap out all the ice blocks, the more fun it is. They have more fun making the bear fall through. As a result, each game lasts less than 30 seconds afterwhich they ask me to set up the pieces again saying, "More please" or "Again!"

Setting up requires more hand strength and fine motor coordination than either of them currently possess. They help me gather the pieces and I am more than happy to set it up.

It's a simple game. We can either play by the rules or not. I like it because the kids have fun with it and it's quality time spent together.

Conversation Book: Getting Ready for Christmas

2011-12-05T23:09:00.000-06:00

Toy Review Tuesday: Pictures on Lids of Baby Food Jars

2011-11-08T20:38:00.007-06:00

I saved some lids of the jarred baby food Matthew used to eat. Then I cut small pictures from magazines and glued them on the inside of each lid. We've successfully used them for several activities.

Activity Ideas
"Look for something... (descriptive)" is one game we have played. We'll have all the picture lids facing up and look for something yellow or round or shiny and so on. As a learning activity, not a testing activity, if I find something first, I'll pick it up, show it to the kids, and say, "This banana is yellow." Elizabeth is usually the first echo in the room saying, "banana yellow." (Yes, she's very verbal and articulate).

Matthew doesn't process complex "wh" (what, who, where) questions yet, except he knows some simple, straight-forward ones through rote learning. If I were to read a short story to him and ask him what, who, and where questions in relation to the story, he would not know how to answer them. But if I showed him some picture lids and asked him, "What do we drive?" then he'll pick up the lid with a car. "What can we eat?" then he'll pick up the lid with green beans or other food instead of one with a telephone.

To help improve auditory processing and short-term working memory, I ask Matthew for 3 or 4 pictures out of 4 to 6 picture lids laid out face up in front of him. And I require him to give me the pictures in the same order that I had requested verbally. Ideally, he should do it without any prompting or repetition of the request. When he can't seem to remember or he gets the order mixed up, I guide him hand over hand. Matthew can usually get a sequence of 3 correctly.

Elizabeth likes to look at the pictures, verbally label the ones she knows, and drop them into the can with the slotted lid.

iPhone Apps
For the tech-savvy like Matthew, iPhone apps that are structured like the activity I described above include:
"ABA Receptive Identification by Class" created by Kindergarten.com
"ABA Receptive Identification - FFC Combined" created by Kindergarten.com
"ABA Receptive Identification by Function" created by Kindergarten.com
"ABA Receptive Identification by Feature" created by Kindergarten.com
"ABA Receptive Identification" created by Kindergarten.com

Distract Her With Kisses

2011-10-27T22:07:00.000-05:00

It was time for a morning snack. In her little toddler voice, Elizabeth said "no! no!" to yogurt and happily nodded "yes!" to eggs. Matthew was at school. She had me all to herself.

I got out the pan and started to take a few steps to the refrigerator to get the eggs. Elizabeth started whining and clinging to one of my legs. She wanted me to sit and play with her - immediately!

I scanned the area quickly, looking for a toy. There were none nearby. Aha! The old valentine chocolate sitting on our kitchen counter finally had a purpose.

I showed her how to sort by color, count, and pour. She discovered peeling the foil off all on her own.

Cooking the eggs turned out to be a peaceful, non-screaming few minutes. The Hershey kisses had her undivided attention. Even the cat thought it was entertaining.

If only it were this easy to distract her all the time... Maybe I should keep Hershey kisses as a handy distraction when I need to buy myself a little time. But that would be expensive and too much chocolate for me to eat. Real kisses are better - zero calories and priceless!

Matthew's Dr. Seuss Themed Birthday Party

2011-10-26T05:22:00.001-05:00

A person's a person no matter how small. - Dr. Seuss

Dr. Seuss' books have become some of Matthew's favorites. His current favorite is "Green Eggs and Ham". He begs to listen to the audiobook almost everyday and he requests that it be read at naptime and bedtime everyday. He giggles and snickers as I read the story.

I think it's pretty funny too because when I read it, I feel like I am reading about Matthew exactly one year ago. He would not eat anything new or unfamiliar. Sometimes, he even rejected and refused to eat familiar and favorite food. He was on 3rd stage jarred baby food. He would NOT touch a pizza, burger, spaghetti, cake, and other food. It was only a few months after he turned 3, after he went to preschool where they helped me with "food therapy", and after we did more specific oral-motor exercises with him that he began to accept more food textures, tastes, and presentations.

He's still picky and suspicious about new food these days but he's not outrightly rejecting food or seemingly fearful of eating. These days he eats a wide variety of food including raisins, loves burgers, pickles, sweet potato fries, spaghetti, ice cream, and even leafy green salads with ranch dressing.

Hence, Dr. Seuss' Green Eggs and Ham was the perfect party theme to celebrate his 4th birthday, which was earlier this month. Balloons were blue and yellow, which are the colors for Down syndrome awareness.

We had a pull-string pinata. All the kids had a turn pulling a string to release all the little toys in the pinata until all the strings were gone. The pinata had to be torn open, but only after all the bigger kids got a chance at using karate chops and kicks on it.

I do so like green eggs and ham! Thank you! Thank you, Sam-I-Am! - Dr. Seuess

Toy Review Tuesday: Tongs

2011-10-25T16:17:00.000-05:00

Pick up, transfer, release. It's harder than it seems especially for smaller hands and low tone.

Using tongs is one way to practice opening and closing the hand with the same motion used in cutting with scissors. This can also strengthen the hands for handwriting later on.

We use cheap plastic tongs with rubber-coated ends from the Dollar store and more expensive metal tongs from the bar supplies section at the grocery store.

The kids like to pick up small toys with them. Sometimes I make it a "pick up the color or shape game" using the foam shapes I made. Matthew concentrates and tries very hard. The rubber ends on the plastic tongs help provide gripping power to make the task more do-able. Elizabeth watches and then decides that poking the foam shapes with the metal tongs.

Doing a more meaningful activity is a more efficient way for Matthew to practice using tongs. He likes pickles. So I have him try to get pickles from the pickle jar and put them on a plate. It takes him a while but he can do it.

Big motivator + More persistence = More practice

Thankfully, he finds the challenge interesting enough to keep his attention and has not resorted to dumping the whole jar of pickles on the plate or reaching into the jar with his hand. Of course, if he's struggling with it too much and it's taking longer than he would like to get a pickle, then I help him hand over hand.

What's next? Chopsticks?

Note: Matthew has not developed a dominant hand yet. He uses his left more but he can still use his right. His occupational therapist (OT) at school has noted that he is showing a more mature grasp with his left hand. Nevertheless, we still offer objects to him at midline (center of his body) so we leave it up to him to choose which hand to use. This is done in the interest of not influencing handedness. It is up to him (his brain) to determine which side will become the dominant side, not up to us to influence.

Here is a short-list of some games with tongs/ tweezers:
Patch Bedbugs by Patch
Wok and Roll by I-Play
Avalanche Fruit Stand by Learning Resources
Operation by Hasbro

Conversation Book: Swim Class

2011-10-24T21:37:00.000-05:00

Matthew loves swimming. He loves dunking his head in the water and he holds his breath for a few seconds. He still needs a floatie though. Without a floatie, he can't seem to propel himself forward so his swim instructor is teaching him that now.

I love that he loves swimming. It's fun and great exercise for him. My fear is that he has no fear of water. That can be dangerous.

He's been away from the pool for 2 weeks now because of the wheezing but I think he's good to go again this week.

Armpits: Our Newest Potty Training Motivator

2011-10-23T17:24:00.001-05:00

Forget M&M's or any food as a "reward" for using the toilet. That never worked for Matthew anyway.

Unless his bladder has reached or exceeded maximum capacity, Matthew will sit on the toilet and hold... hold...hold... and nonchalantly act like he doesn't need to go. BUT show him your armpit and say you'll let him tickle your armpit after he pees. And just like turning on a faucet, he wills himself to pee. Several times while he's going, as crazy as it seems, he'll stop peeing midstream and want to tickle your armpit. Saying he can AFTER he's done, he restarts the flow instantly.

As soon as he's done, he gets his "armpit reward" and many chuckles out of him and us. I'm not sure which he finds more hilarious - the fact that he gets to tickle our armpits or that he's secretly got us under his "potty control".

Does He Initiate?
Usually not. But there are a few times he has. He'll either come find me and say "I need to go potty" and lead me to the bathroom with him hand-in-hand. Sometimes, his pants and underwear are still dry. Other times, he had already leaked into them. He knows very well when his pants are wet or dry. And there were a few times in the past 3 days when he went to the bathroom himself and just needed my help getting dry pants and underwear from the closet.

Bigger bladder? Better Control?
I'm not sure. He may have a bigger bladder. After all, he has grown some.

Seeing how he can stop the flow midstream, I would think he had better control. But why the leaks/ accidents? Some days he can hold it for an hour. Some days he has held it and stayed totally dry for 2 hours.

Other Motivators
We have had some success using include clapping, lots of praise and cheers, bringing a small toy to the bathroom, allowing him to read a book while on the toilet, and playing on my iPhone while on the toilet. Some worked better than others, depending on his mood. And some were effective only for a couple weeks.

The most effective strategy we've tried is using a kitchen timer as an audible cue that it was time to go. It worked like a charm for a whole month and a half. No resistance whatsoever from him. Then it got to be less effective. I must have jinxed it by blogging about it. He actually still responds to the timer going off and knows it's "potty time!" but he needs more convincing these days. So we still use the timer despite the muted effectiveness.

Another effective strategy that we still use is giving him a short sequence of activities he can expect after going potty. For example, "go potty, get dressed, wash hands, listen to music." Or "go potty, wash hands, blow bubbles." The key is to know what HE wants to do in order to truly motivate him to get through the pottying process without spacing out, without a tantrum, and with as little help as possible.

By the way, this is our 10th month into potty training.

Conversation Book: At Grandpa's Farm

2011-10-22T22:46:00.002-05:00

I am usually thinking of ways to provide hands-on activities for Matthew. He learns best by being completely immersed in the experience instead of being a mere spectator. By being completely immersed, he is getting visual, auditory, tactile, and whenever possible, olfactory and vestibular input as well. His mind and body are completely engaged and this active stimulation is the ideal way for him to learn. It seems to be an effective way to get him processing and retaining information. On that note, I try to pair fun gross motor activities with more academic activities.

I love the glimmer he gets in his eyes and the verbal and non-verbal excitement he shows when I show him photos of an experience he enjoyed immensely. It usually is a "full contact" experience that triggers such a reaction.

A simple trip to Grandpa's farm is in Matthew's memory bank in the "fun and exciting" category. Such memories usually motivate him to talk more therefore, stimulating more speech and language and adding to his fast-expanding vocabulary. And even if he may not verbally demonstrate his learning right away as Elizabeth typically would, the fact that he gets that glimmer I described is proof enough for me that he gets it, i.e. learning input was successful.

Two of his top favorite things to do at Grandpa's farm include spending time with Grandpa and riding in Grandpa's electric car. He loves to give Grandpa hugs and he laughs and giggles in the electric car, especially when we drive through walls of thick weed overgrowth. Fast is the only speed he loves.

Book Review: Embracing God's Purpose for My Special Child

2011-10-21T10:12:00.294-05:00

Your child is God's tool, His special agent, to make you the person He wants you to be.

Embracing God's Purpose for My Special Child is a very personal and prayerful memoir and "parenting guide" written by Malu Tiongson-Ortiz, a Filipino mom and advocate for Down syndrome in the Philippines. Her 3rd and youngest child, Clarissa, has Down syndrome and is 24 years old this year.

Malu Tiongson-Ortiz's religious (Catholic/ Christian) outlook about her experiences with raising Clarissa makes the perspectives in the book different from any other Down syndrome-related memoir I have read so far. She writes about her experience with receiving the diagnosis, various people she has connected with, financial challenges, health, homeschooling, adolescence, sexuality, and how we are stewards, not owners, of our children. It seems the target readers are Filipinos in the Philippines with references to local resources and the section about wills and legal matters only applies within the Philippines.

Reading a non-US based publication was very interesting for me because it offered glimpses and insights into life with Down syndrome in the Philippines. The awareness levels are somewhat different between the US and the Philippines. For example, it seems that first-people language is advocated here where it may not be (yet) in the Philippines. But that may also be due to language translation or pragmatics. Be forewarned that if you are sensitive and easily offended by terms like "Down syndrome daughter", no matter what the circumstance or context, then this book may not be a good reading choice.

Another example is in the local beliefs and misconceptions (many ridiculous ones) about Down syndrome. One mom thought that kids with Down syndrome were only "born to the rich". The author mentions that many believe Down syndrome is a result of an incestuous marriage or karma or punishment from God.

What is most inspiring is seeing how faith can mold beliefs and parenting styles. And while cultural, religious, and socioeconomic differences may provide varying landscapes for Down syndrome in each country, the common denominator that stands out is how we all want what is best for our child with Down syndrome and that we will go the extra mile, and then some.

God's Purposes
Since the Philippines is the 3rd most populous Catholic country in the world, with 75.5 million Catholics in a little over 90 million total population (fact as of February 2011), it's just natural to expect this memoir to be mainly focused on the author's personal reflections and realizations of how God would want us to raise our children with Down syndrome. And needless to say, the author believes that "No special child is an accident".

There are fascinating, heart-wrenching, and inspiring stories of other children and families whom she had the pleasure of meeting in her journey. She writes about how her faith and character were molded throughout her journey, especially the most trying and difficult times. Her work shows an inner peace and strength in believing that God has a special purpose for each child with special needs in every aspect of life.

Drawing upon her own and others' experiences, she shares her personal reflections of God's purposes. "God gave us our special child...

"...to teach us to seek Him and pray to Him."

"...to mold our character."

"...to understand the value of life."

"...so we may learn to have hope."

"...to teach us to have compassion."

"...to teach us to choose better priorities."

"...to teach us to count our blessings."

The reference to bible verses may alienate non-Catholic/ non-Christian readers who are not familiar with bible content but perhaps they can still find appreciation, inspiration, and encouragement within the stories shared in the book. Or perhaps think of how it would relate to their own religions.

Overall, the author serves up a good dose of honesty and positivity. I enjoyed reading it.

Would you like to read it?
I couldn't find this book on amazon or other US online bookstore. If you are interested in borrowing this book from me, please leave a comment on this post or contact me.

Spontaneous Speech and Simple Addition

2011-10-19T17:22:00.000-05:00

Spontaneous speech is one of the areas we are focused on developing at home and at school. Early number concepts is another area. Matthew likes numbers. This week at school, Matthew spontaneously demonstrated that he could do simple math too.

Working on counting objects (I forgot what was used) at preschool, Matthew's teacher asks him to put 4 in a container. He counts 4 into the container.

Then 3. He counts 3 into the container.

Then 2. He counts 2 into the container.

Then 3 again. But there are only 2 left on the table. He counts 1, 2... pauses and scans the table. Then without any prompting he slowly says, "I need 1 more."

Teacher: Yes, you do need 1 more, Matthew.

Matthew (speaking slowly): I can't find any.

Teacher: What should we do?

(Matthew pauses thoughtfully).

Matthew: Get more in here (pointing to full container).

And that, my friends, is outstanding PROGRESS!

Toy Review Tuesday: Boards as Balance Beams

2011-10-18T23:34:00.000-05:00

Walking the plank has never been so fun. It can help improve gait, which is the pattern of how a person walks (or runs).

According to the book Gross Motor Skills for Children with Down syndrome,

"walking on a balance beam will help to change your child's early walking pattern. In her early walking pattern, she will use a wide base, her hips will rotate outward causing her knees and fee to turn out, and she will take weight on the inside borders of her feet. By practicing walking on a balance beam, she will learn to walk with her legs and feet in a new position. She will learn to rotate her hips so her knees and feet point straight ahead."

As suggested in the book, we started out with a 1-inch thick x 8-inch wide x 6-foot long wooden board from our local home improvement store. I spray-painted stenciled numbers on ours since Matthew enjoys counting. It used to be an outside activity but I've since brought the boards indoors, in our hallway. Both kids enjoy walking on it whenever they are in the hallway.

Matthew has progressed to walking on the narrower 1-inch thick x 5.5-inch wide x 6-foot long board, mostly without assistance. I couldn't find the time to paint this board but it was equally enjoyable for both kids. Elizabeth walks along the narrower board with one foot on and one foot off. That's how Matthew started with the wider board.

The next step would be to walk on a 4-inch wide x 6-foot long (or longer) board, placing one foot in front of the other without assistance. I plan on getting a board that is at least 2 inches thick when he's ready for a bigger challenge. Being just a little bit higher off the ground can be scary for many kids. A 1-inch thick balance beam helps take away the fear of falling from a higher surface and focus the attention on walking within the set boundary.

These wooden boards also double as a racetrack for little horses or as a motor speedway.

Fancier (but more expensive) balance beams are also available from various retailers. Googling "balance beams for kids" on amazon.com will show many varieties of balance beams. The book "How To Teach Your Baby To Be Physically Superb" by Glenn Doman, Douglas Doman and Bruce Hagy has a detailed plan on how to make a sturdy, height-adjustable balance beam.

A word of caution: Leaving the boards in the middle of the hallway at night can result in stubbed toes. Bill learned that painful lesson one time at about 2am.

Conversation Book: Driving Grandma's Car

2011-10-13T06:00:00.001-05:00

There seem to be more individuals with Down syndrome who do not get driver's licenses than those who do. Yes, there are people with Down syndrome who have learned to drive and who have a driver's license. Some of these inspiring, hard-working individuals are on the Self-Advocate Council at the National Down Syndrome Congress. Click here to read about them.

Will Matthew ever learn to drive? We don't know yet.

Will learning to drive be one of his dreams? We don't know either. That's for him to figure out.

There are people without Down syndrome, typically developing people, who choose not to drive for various reasons.

At this point in time, our focus is on providing learning opportunities that would further his development so that later on in life, he will have more choices available to him. And I hope that one of those choices would be whether to drive or not.

So for now, he will be driving Grandma's car.

Breathing Treatments

2011-10-12T17:15:00.000-05:00

Say hello to our new friend, the nebulizer. It is the newest addition to our daily routine.

Matthew's pediatrician detected wheezing at his most recent appointment a few days ago. She wanted him on arbuterol, which is an inhalation solution used to relieve bronchospasm. After one breathing treatment at the doctor's office, the wheezing stopped (or at least quieted down). The good news is he doesn't have bronchitis. The other news is his bronchospasm (coughing fits) is a symptom of Reactive Airway Disease. It's not the same as asthma but I read that a small percentage of children under 5 may go on to develop asthma.

As with any medication, using arbuterol presents some possible side effects (copied from package insert):
- Central Nervous System: tremors (20%), dizziness (7%), nervousness (4%), headache (3%), insomnia (1%)
- Gastrointestinal: nausea (4%), dyspepsia (1%)
- Ear, Nose and Throat: pharyngitis (<1%), nasal congestion (1%) - Respiratory: bronchospasm (8%), cough (4%), bronchitis (4%), wheezing (1%)

He breathes in a dose every 4 to 6 hours or as needed. Each dose takes an average of 15 minutes. I am thankful that he doesn't mind the breathing treatments at all. He's even willing to hold the mask up to his face by himself.

He is content to listen to audiobooks while sitting on the couch next to the (rather loud) nebulizer. Sometimes he plays on my iPhone.

We don't know what's causing his symptoms. His allergy (blood) tests have always come back negative. Can the type of allergy test be a factor in accuracy of results?

He has not had RSV, which apparently increases the chances of developing asthma.

Maybe it's genetic. A few distant relatives have had asthma.

Maybe it's the current high level of ragweed (pollen) this time of year. His doctor did say that this is peak time for such symptoms to surface.

I hope it's not from his swimming lessons at an indoor pool. He loves swimming and he would be very sad if this was a cause. I googled a few articles using keywords "indoor swimming pool asthma" stating that by-products of chlorine and human organics (like sweat) in indoor swimming pools are suggested to increase the chance of asthma in children. However, it's not conclusive.

I hope the cat isn't the culprit either.

Right now, I am hoping that it doesn't develop into asthma or bronchitis.

Toy Review Tuesday: Corrugated Castle

2011-10-11T21:57:00.000-05:00

This carboard coloring castle was a hit at Matthew's birthday party. Kids from 17 months through 13 years enjoyed playing in the castle.

What's not to love? It's a fun place for a game of Peek-a-boo. Kids don't get in trouble for writing or coloring on the walls with markers. It's a great set-up for pretend play.

It came in 8 pieces with instructions. One of Matthew's uncles put it together at the party.

After the party, it was taken apart for us to take home and I set it up at home for more coloring and hiding fun.

At this time, the corrugated castle costs $34.99 on amazon.com. It was totally worth it for the party.

Another option is to make one at home with large, sturdy shipping boxes. I had made one before deciding to get the castle. I cut out a door on opposite sides and a little peep hole on another side. The peep hole is Elizabeth's favorite. Matthew and Elizabeth (and our cat) have a blast crawling through it, hiding in it, with it at home but would be too boring and unlikely to hold up well at a party with 13 kids.

We also bought the corrugated house but didn't have enough time to set it up at the party. We'll save it for a future birthday.

The Not-So-Well Visit

2011-10-10T23:07:00.000-05:00

It was time for Matthew's annual well visit with the pediatrician. Matthew is generally a healthy kid but his pediatrician visits are lengthier and more comprehensive than Elizabeth's doctor visits. There is just so much to go over and keep an eye on such as the thyroid, Celiac disease, blood counts to screen for leukemia, vision, hearing, and so on. Having Down syndrome, in addition to any possible family history of medical issues, puts him in a position of "higher risk" for certain health stressors.

Thankfully, Matthew has not had any major heart issues so he does not see a cardiologist on a regular basis. He had a slight murmur for a few years but that seems to have disappeared.

Reactive Airway Disease
This well visit turned into a not-so-well visit quickly when wheezing was detected through the stethoscope. Matthew had developed a cough on Saturday evening after his birthday party.

He got a breathing treatment right away, which consisted of arbetural delivered via a nebulizer and him sitting, breathing it in and cooperating for 10 whole minutes. He wanted to go home already but we were able to make a game out of using the nebulizer so he fully - and happily - cooperated with the nurse.

The wheezing was reversed after the breathing treatment. This meant that the breathing treatment worked. This also meant that he did not have bronchitis. I will be continuing breathing treatments at home for every 4 to 6 hours or as needed.

I only hope that this does not turn into asthma.

Bloodwork
The part of his annual well visit that I dread the most is bloodwork. Matthew has tiny veins and is a hard stick that many lab technicians have had to stick the needle in his arms and or heel more than once on many occasions. We have only found one lady lab technician who was more skilled at it than any other we have met. Unfortunately, I forgot her name but I know where to find her.

Tip: Once you find a really good lab tech for bloodwork, remember their name and if possible, request for the person at the next blood draw.

It is extremely emotionally stressful for me to have to hold him down or watch him being restrained by several people to get his blood drawn for a series of tests to check thyroid, vitamin D, ferritin, blood counts, and screen for Celiac disease. Matthew cries so hard as struggles to free himself that he breaks a few facial capillaries. This results in two patches of facial petechiae around his eyes for a couple of days.

I am thankful that this year, we did the bloodwork simultaneously with Matthew's orchiopexy surgery. There was minimal restraining involved and it went much quicker since the nurse was able to draw blood directly through the IV needle, which was already in his arm.

The results of the bloodwork: no Celiac disease, thyroid was within normal range, blood counts were within range, and Vitamin D was still on the low side.

Vision
A new concern this year involved his eyes. His neurodevelopmentalist at NACD had noticed slight strabismus so I brought it up with our pediatrician. She concurred and suggested that we have our opthamologist do a more comprehensive exam.

Strabismus is a condition in which the eyes are not properly aligned with each other. It can adversely affect depth perception.

Time to schedule an appointment with our pediatric opthamologist.

Ears, Nose, and Throat
His throat was red today. Probably another virus. But his nose hasn't been runny and he has been fever-free so hopefully this will pass quickly. I'm not sure how this is related to the wheezing though.

Ears were waxy but both ear tubes were still in. We're due for another visit to the ENT soon.

Happy 4th Birthday, Matthew!

2011-10-05T23:33:00.000-05:00

Four years. Wow!

Just a couple months ago, I experienced one of the sweetest moments in my life. Matthew spontaneously said for the first time as I tucked him in bed, "Love you (3-second pause) so much!"

Today, he is 4.

Today, he continues to inspire many people.

Today is another step (or little trampoline jump) into tomorrow as he makes his way in this life, believing that he CAN!

Matthew, we love you (3-second pause) SOOOO much!

I believe
fate smiled at destiny.
Laughed as she came to my cradle
"Know this child will be able"
And laughed as my body she lifted
"Know this child will be gifted
with love, with patience and with faith."

(From the song "Wonder" by Natalie Merchant)

Toy Review Tuesday: Beans, Beans, Beans

2011-10-04T23:44:00.000-05:00

Dried beans are proving to be quite a versatile toy at our house, especially since Elizabeth doesn't mouth toys anymore. In addition to putting them in a plastic container for a Homemade Tactile Sensory box (from an earlier toy review) to practice scooping and pouring and to provide sensory input, we are re-discovering the many fun and educational ways to play with beans.

Beans can be used for counting. One-to-one correspondence counting and other early number concepts like "more" or "less" or "few" or "many".

Beans can be used to make sock bean bags, which is something I learned recently from Elizabeth's visit with our local Parents as Teachers group. Elizabeth enjoys fine motor activities. Usually, whatever Elizabeth is doing, Matthew wants to try too (and vice versa). This activity hits many areas: fine motor control and coordination, pincer grasp, sharing and cooperation between siblings, and attention span.

The only materials needed are dried beans and socks. We used Daddy's socks. (He won't realize they're missing anyway - not until he reads this).

After filling the socks, make a knot so the beans don't fall out.

Then fold over to form a bean back sock ball.

Bean bag socks are great for:
- tossing overhand or underhand into laundry baskets (for a wider target) or small containers (for a smaller, more challenging target).
- a quick game of catch.
- balancing on various parts of the body like the head, arm, knee, and so on.

Our bean bag making activity then turned into a pretend cooking game. Matthew was handing Elizabeth pots and pans and plates as she filled them with beans and stirred with the spoon.

We also made egg shakers filling plastic eggs from last Easter with beans and sealing with glue.

Other good fillers for the egg shaker are uncooked rice and small uncooked pasta.

Related post:
Toy Review Tuesday: Homemade Tactile Sensory Box

Conversation Book: Muffins

2011-09-25T21:38:00.000-05:00

Matthew and Elizabeth have become muffin monsters in the past two weeks. They ask for muffins EVERYDAY.

Elizabeth says, "Muffin!! Muffin please!!"

Matthew says, "May I have muh-min please?" If he says the word slowly enough and after watching how I say it, he can articulate the middle "f". It just takes a little prompting. He can sight read the word "muffin" easily.

Book Review: Fine Motor Skills for Children with Down Syndrome

2011-09-23T04:24:00.001-05:00

As an occupational therapist and a mom of a daughter with Down syndrome, Maryanne Bruni, offers a combination of professional knowledge and practical ideas in her book "Fine Motor Skills for Children with Down Syndrome."

I've had this book since before Matthew could roll over. It's been a wonderful resource to have on my bookshelf.

I referred to the book when Matthew was only a few months old, trying to get a better understanding of "fine motor" and what activities can help Matthew's fine motor development. I like the activity and toy ideas. The book served as a good guide when preparing for Matthew's annual IFSP (Individualized Family Services Plan) while in the Early Intervention program and I still find it useful when preparing for Matthew's preschool IEP (Individualized Education Plan).

Also included are practical and useful information on self-help skills, pre-writing skills, and how sensory system affects learning and behavior in individuals with Down syndrome.

I wish I paid more attention to the chapter on sensory processing early on. We did some oral stimulating activities with Matthew when he was in Early Intervention. But understanding how some targeted activities can be calming while others can be awakening or stimulating to all the senses, not just the mouth, would have been useful for me to know even when Matthew was a baby. Looking back with the knowledge I have not, I think I could have done more for Matthew when he was only a few months old. He didn't use his arms and hands much actively until he was maybe 7 months old. Knowing what I know now, I might have asked about and researched more proprioceptive activities for his arms and hands to give them the input they would ordinarily be getting if his upper extremities were more active.

Some of the information was good for me to re-read as reminders. Some of the information is more relevant to me now than they were 2 years ago so I am able to get more out of the material. Now I understand that Matthew's high tolerance for pain is probably due to his under-responsiveness to sensations. I also thought the table comparing "typical behaviors for many children with Down syndrome" and "behavior that may indicate sensory processing difficulties" was very interesting.

According to the table, Matthew mostly exhibits "typical behavior" except for he was only eating a limited selection of food and was extremely picky about consistency and texture. Thank goodness that has slowly been changing since the beginning of this year! It was addressed as a sensory difficulty so facial and oral stimulation activities were applied. In fact, we still do them everyday. Seeing other kids eat and being with persistent, patient teachers at preschool has also helped him overcome his food aversion.

Overall, a very useful book.

For more in-depth (but still practical and easy-to-understand) discussion of sensory processing issues, I recommend reading the book Sensational Kids by Lucy Jane Miller, PhD OTR.

Toy Review Tuesday: Watering Can

2011-09-20T22:31:00.002-05:00

Pouring a drink from a shallow pitcher is one of the fine motor skills that I plan on teaching Matthew this year. A watering can is one of the many ways that provides fun learning and practice time for moving his wrist a certain way and how much to tilt it so that a steady stream comes out. It takes some wrist strength and stability and a certain level of control to pour. And when pouring from one container to another, that sense of control and ability to gauge just the right amount of wrist movement becomes more important in order to avoid spills or overpouring. Watering plants doesn't require such precision but it may be a good way to start developing that precision.

Both kids love playing with water so they each have little plastic watering cans, which have been fun additions to our Water Table play and kiddie pool.

They also love to imitate what Bill and I do. We planted tomato plants in pots on our back deck this year and both kids eagerly want to participate in watering all our plants. So yes, we let them "help". They enjoy it so much that they ask to water the plants.

Letting Matthew use the big watering has added benefits for him. A half-full big watering can is heavy enough to improve his muscle tone. He learns to gauge how much "power" he will need to apply to lift the watering can. He learns how to hold it upright to minimize spills as he walks from the faucet to the plants. He learns to hold it different way to water the plants.

It is considered a "heavy work activity". Many books on sensory processing talk about heavy work activities as a way to provide proprioceptive input to the body. According to a site called Sensory Processing Disorder,

Proprioceptive input is the performance of tasks that involves heavy resistance and input to the muscles and joints, and is essential in helping our bodies assimilate and process both movement (vestibular) and touch (tactile) information.

Intense proprioceptive input has been beneficial for Matthew. He doesn't have an "excessive need to crash and bump into objects, walls, and people" like the Sensory Processing Disorder website describes wherein the input is calming. On the contrary, I believe the right intensity of input helps awaken and stimulate his muscles and nervous system thereby helping him attend better to an activity and allowing him to get more out of the experience cognitively.

Since Elizabeth can't manage the big watering can yet, she's content using the little plastic one.

She's also more than willing to tell Matthew where to water. "There!" she says, as she points. She's proving to be quite a natural at directing.

What My Soon-To-Be 4 Year Old With Down Syndrome Is Doing And Learning

2011-09-19T12:05:00.001-05:00

At Matthew's first IEP (Individualized Education Plan) meeting last year, I prepared a Developmental Achievement Chart (DAC) and shared it with all involved in the meeting. I try to update it quarterly. It lists what Matthew can do and what he is learning to do. It's very encouraging and exciting to see his progress when I update it.

His 2nd IEP meeting is on September 23 and I think I am ready.

So, how is Matthew doing these days? I'll share a few highlights.

Communication Skills
Matthew can:
- sight read 224 words with comprehension.
- understand more words than he can read.
- understand and independently use size concepts, descriptive concepts, and spatial concepts during structured language activities and sometimes in unstructured settings. Last week, he and Bill were racing a seadoo on the floor. Matthew spontaneously said, "The seadoo is fast!" Sometimes Matthew will give me a hug and say, "Big hug!" We saw a truck drive past when we were out on a wagon ride one day and he said, "A black truck!"
- articulate age-expected sounds in the initial and final positions of many words.
- answer "yes" or "no" questions appropriately instead of just repeating the last word he hears. Today, I asked him if he wanted ice in his cup of water and he said "yes please".

Matthew is learning to:
- sight read 8 or 9 new words per week. It helps him expand his vocabulary and practice his reading skill.
- speak more clearly so that unfamiliar people can understand him.
- verbally express himself with sentences I write for him to read at certain moments. I've never taken a mind-reading course but this is as close as I get.
- use language more conversationally and spontaneously.
- apply more concept words spontaneously each day.

Fine Motor Skills
Matthew can:
- use both hands to manipulate small objects. He shows preference for his left hand most of the time but he still switches back and forth.
- scribble with crayons and markers on an inclined, horizontal, and vertical surface. He can also imitate vertical lines, horizontal lines, and circles.
- twist lids off containers, turn doorknobs, lock deadbolts.
- snip paper with a modified preschool scissors. He can also cut play-doh with play-doh scissors but still has a hard time holding on to the scissors and coordinating the movement.
- turn single pages in paper books.

Matthew is learning to:
- use both hands in a more refined and coordinated manner. We need to improve his dexterity, hand strength, and visual-motor skills.
- draw a cross and simple shapes. We need to work on preprinting concepts.

Gross Motor Skills
Matthew can:
- confidently put his face in the pool, confidently jump in a pool with a swim vest or back float, and doggie paddle the whole length of a pool with a just back float strapped to him.

- jump in place with lift-off.
- jump 6" forward on level, even ground.

- walk up and down a flight of 6" high steps, holding the rail, one step at a time.
- walk up and down a single 6" high step hands-free.
- get on and off his tricycle with minimal assistance.
- hang with arms from a 7/8" diameter bar for 3 to 5 seconds.
- run.

Matthew is learning to:
- float on his back in the pool and improve his swim skills.
- jump off a 4" high step without hand support.
- walk up a flight of 6" high steps holding the rail, alternating feet.
- hang with arms from a bar for longer durations and lift legs while hanging.
- run with proper symmetry.

Self-help/ Independent Skills
Matthew can:
- use a spoon or fork to eat independently.
- wipe his mouth and clean up small messes at the table with prompting.

- take his plate to the kitchen sink after a meal, sometimes without any prompting.

- independently get on and off the toilet with a step stool, flush, and wash hands with verbal prompting.
- blow his nose into a tissue with adult assistance.
- pick between 2 shirts to wear each day.
- fasten the top velcro on his shoes, with prompting.
- step into his shoes to put them on.
- zip up a jacket (after it is started) and unzip with some assistance.
- independently remove socks.
- indpendently put on underwear/ naptime & nighttime pull-ups/ elasticized shorts/ elasticized pants, with verbal prompting and minimal assistance when he gets stuck. He sometimes needs help pulling up the backside of his underwear or pants/ shorts. I also have to hand him the underwear/ shorts/ pants so that he holds the waist and can readily put them on.

- put on a loose shirt over his head and put his arms through but the shirt has to be handed to him ready for him to slip on over his head.

Matthew is learning to:
- use a spoon and fork with more precision, less spilling.

- initiate and verbally communicate that he needs to go potty.
- zip up jacket (after it is started) while he holds the bottom part with one hand as he zips up.
- put on socks with assistance starting. He still has a hard time pulling it from the bottom over his heel up to his ankle.
- remove a loose shirt independently.
- put on underwear, elasticized pants/ shorts, without any assistance with pulling up the backside.
- identify the front of clothing from the back.

Social Skills
Matthew can:
- say "Excuse me" when he passes gas. And he grins from ear to ear.
- say "Bless you" without prompting when he hears someone sneeze.
- say "Thank you" and "You're welcome" most of the time without prompting and at appropriate situations.
- appropriately approach adults, especially when familiar to him. He's very sociable.
- get along with other kids and participate in group activities.

Matthew is learning to:
- appropriately approach, interact, initiate play or join a game with other kids. He's generally shy around his peers.
- ask for a turn with a toy, not just grab toys from Elizabeth.

Cognitive Skills
Matthew can:
- play Memory Game with up to 5 pairs.
- navigate my iPhone, his VTech VReader, and VTech Mobigo independently. He only needs help to slide the screen off the keypad on his Mobigo.
- understand number concepts up to 4, maybe even 5. I asked him to give Elizabeth 4 saltine crackers yesterday and he did it flawlessly.

Matthew is learning to:
- play other developmentally-appropriate board games.
- count with 1-to-1 correspondence more accurately.
- play more elaborately and appropriately with non-electronic toys with better attention span. He usually plays for 2-5 minutes and then he moves on to a different toy.

Senses and Perception
Matthew can:
- attend to tasks well when very alert. He is a visual learner and a kinesthetic learner. He also learns better by experiencing concepts rather than just hearing or reading about them. He tends to be under-responsive at times and benefits from various vestibular and proprioceptive activities for sensory input.
- demonstrate understanding of verbally-given familiar, simple 2-step directions (related & unrelated) in the same sequence it was requested with minimal distractions.
- repeat a verbal sequence of 3 to 4 objects or colors in the same order it was given.

Matthew is learning to:
- stay on task with activities.
- demonstrate understanding of verbally-given familiar, simple 3-step directions (related & unrelated) in the same sequence it was requested.

So this is where he's at developmentally. He will be 4 years old on October 5.

A Step Stool for School

2011-09-18T21:55:00.000-05:00

The kiddie toilets at Matthew's preschool are about 2 inches shorter than the ones we have at home. But Matthew is still too short to back up and sit on the toilet. He is one of the smaller kids at school.

At home, we use a product called The Potty Stool, which is also available on amazon.com for $129. It is serving its purpose very well at home, allowing Matthew to get on and off the toilet independently with ease and stability.

In order to replicate his toileting experience at home, and in collaboration with his occupational therapist at school, we decided he would need a step stool for the kiddie toilet at school.

A store-bought plastic step stool like the Baby Bjorn Safe Step was not wide enough for him to get on and turn around on safely as it measured only 13.5" wide x 9.25" deep x 6" high. The Little Looster Booster Step Stool was too high for the shorter kiddie toilet, measuring approximately 26" wide x 19" deep x 8" high.

We needed a step stool similar in width and depth to The Potty Stool at home. It needed to be 18" wide x 11" deep x 6" high. So we (I) decided to make one.

Why not just have the school order one to be made or buy one themselves? Why wait when I can make one easily? Who knows how long it will take to get one made or bought? It will be exactly what I would want Matthew to use until he grows tall enough that he won't need it anymore.

We used:
- (2) 1" x 6" x 10.5" wooden boards
- (1) 1" x 6" x 15.5" wooden board
- (1) 1" x 12" x 18" wooden board
- (6) 1-1/2" long wood screws

The hardware store cut the wooden boards to size. I sanded the splinters and rough edges then penciled in locations for the wood screws. Bill drilled. Elizabeth, our foreman, handed us each piece making sure we had them all. And together we assembled the pieces. It was actually quite simple. And the materials and cutting charge only cost around $25, with enough extra material to make a second step stool.

Matthew, our quality manager, gave us his seal of approval after a test run where he was able to step up on it and slowly turn around without assistance.

I hope it works out at school.

Toy Review Tuesday: Felt Board Stories

2011-09-13T00:02:00.000-05:00

Using felt board pieces are one way I am able to make stories or rhymes more tangible. Matthew and Elizabeth enjoy putting the felt pieces on our modified garage sale-bought (for $5) easel. It's "modified" because I covered the chalkboard side with 4 sheets of adhesive felt ($1 per 8" x 10" sheet).

Beyond Play sells magnetic felt boards and felt boards with cardboard backing. I didn't want to spend $20 to $30 on a felt board for our purposes. I suppose I could've also made one using a flat panel of wood from the hardware store and covered that with adhesive felt sheets. Hmmm...

We have several felt story sets. So far, we have "5 Little Monkeys Jumping on the Bed", which is pre-cut and store-bought (online from Beyond Play). Matthew enjoys pulling the monkeys off the felt board and dropping them on the floor. Then he says, "No, no" while shaking his head when we get to the part "No more monkeys jumping on the bed."

The rest I made using felt board templates from an educational resource website called DLTK's Growing Together. There is an option to print in color or black and white - with the idea that the kids will color the pieces. Then I cut out the pieces, laminated them (I use a Scotch Thermal laminator. It is so easy to use and does the job very well.), and put adhesive felt on the backs so they'd stick to the felt board. I tried using cut up pieces of sandpaper but the glue wouldn't hold the sandpaper and plastic together.

We have Baa, Baa Black Sheep, 5 Little Ducks, and Itsy Bitsy Spider.

I also made a fish tank felt set (with stiffer felt) just for fun. It's been good for counting and colors. I only made 10 fish though.

Our latest homemade felt story set is "Brown Bear, Brown Bear" since that is the book that Matthew's preschool class is reading at school this week. I also made separate pieces with just the words "brown bear", "yellow duck", "blue horse", and so on for all the animals in that book.

Play time with the felt stories isn't consistent though. The kids' staying power largely depends on their moods and how interesting I make it. Sometimes they'll be into the felt stories for 5-10 minutes at a time. Sometimes I am only able to hold their interest for 2 minutes. But that's ok. With most activities I do with them, I go for repetition and fun instead of length of time. Repetition has always been one of the important keys to Matthew's learning. And of course, it has to be fun!

Overall, they've been great to have for my visual learner (Matthew) and my quick study (Elizabeth). They are another simple tool to encourage speech, language, cognition, and reading.

Matthew Likes Jazz

2011-09-11T21:42:00.000-05:00

Simple, spontaneous moments can be a lot of fun. Sometimes they turn out to be one of the most special moments I have with my kids.

We usually listen to kid music. Matthew enjoys songs by Greg and Steve, The Laurie Berkner Band, songs from the Kindermusik class he was in a couple years ago, and other similar kid music.

The other day, I had my iTunes playing an audio recording of Matthew's cousin reading a book for him. It was in the iTunes list on my laptop. Before I could click on the stop button, a lively jazzy song came on.

Matthew started dancing. He could not contain his excitement. He loves music. He loves to dance. I turned up the volume and we danced. We twirled. We moved around the kitchen. We made up simple dance moves (a fun way to practice listening to directions, reinforce body awareness and body movement).

Elizabeth danced for a little bit then decided to play with cups instead.

"The Blue Room" by Tommy Dorsey from the album "Anthology of Big Band Swing".

It was a lot of fun and brings a smile to my face whenever I think about it. We're going to do this more often.

Conversation Book: Picnic by the River

2011-09-08T15:42:00.000-05:00

I like to take photos. I'm not a professional photographer by any means but the photos I take are good enough to tell a story. They are good enough to put in Matthew's conversation book for school. Matthew enjoys looking at them and sharing them with his teacher and friends.

Photos in the conversation book can be about a special event or just any typical, everyday thing we do. The main criteria is that the photos are interesting and relevant to Matthew.

We went on a mini-picnic by the river last weekend. It was a nice, simple family outing. No picnic baskets or well thought-out picnic food. Just burgers and sweet potato fries from a fastfood place in town. No rain. Just the warm sun and gentle breeze. And it was a new experience for the kids. They had never eaten by the river before.

And these are my favorite photos of that day.

Toy Review Tuesday: Memory Game

2011-09-06T07:08:00.046-05:00

I remember playing Memory Game as a child. It was one of the many games I enjoyed. It makes me happy to see that Matthew has taken an interest in it too.

I began teaching Matthew how to play a few months ago. Starting out with just 2 pairs, I'd illustrate how to turn over the cards individually to find the matching card. I had to be quick and enthusiastic about it to keep Matthew's attention and get him interested. He wasn't very interested the first few times I brought out the game.

Teaching him the objective of the game only took up to a minute or less each time we would "play". Whenever I let him have a turn, I applied the "errorless learning" method, wherein he always succeeded at finding the matching card. This involved either hand-over-hand help or me pointing to the right card to flip over.

Gradually, as he started to show more interest, I added a 3rd pair. These days we play with either 4 or 5 pairs while Elizabeth likes to look at the other cards. It's cute to see her pretend to play too. She'll say "Match!"

A couple of iPhone apps helped build upon his interest and understanding of the game too. The app "Monkey Preschool Lunchbox" has a mini memory game in amongst the other games. Another one I have on my iPhone is "Preschool Memory Match".

When Elizabeth is older, Matthew and I will teach her to play Memory Game too.

Conversation Book: I Scream for Ice Cream

2011-09-05T22:39:00.000-05:00

Matthew tried his first tiny spoonful of ice cream at his 1st birthday. Then he never ate ice cream again until he was 3-1/2 years old. We offered him ice cream but he always refused it. He did not want it near his mouth. He didn't want anything to do with ice cream. It was all part of his food aversion, not just being picky. It was as if he feared it.

These days, he asks for ice cream out of the blue. If Elizabeth hears "ice cream", she starts asking for it too. Then it's like two baby birds with their mouths wide open begging for ice cream. For Elizabeth, I expected her love of ice cream to come naturally. And it did. For Matthew, it was a 180-degree shift from "keep that ice cream away from me!!"

So sometimes, we go to the ice cream/ frozen custard place in town. I bring my own mini cones because they're a better size for the kids to hold and eat compared to the regular-sized ice cream cones available. Then we sit and enjoy our ice cream. I usually get a small vanilla with fresh bananas and split it between the kids. Of course, I eat the left-overs. And with these two ice cream monsters, there's hardly any left-overs.

I'm going to have to get my own cup next time. I love ice cream/ frozen custard too. Except I love chocolate with roasted pecans and macadamia nuts.

I put photos from our latest trip to the ice cream place in his conversation book for school to share with his teacher and friends.

Hand, Foot, and Mouth

2011-09-04T15:13:00.001-05:00

On Thursday, I noticed a bumpy, pimply-like rash on his left arm near his elbow. He also had a similar rash on his legs. It looked different than the usual eczema he got on his body like in the following photo.

On Friday, a cranky, irritable Matthew whined through eating a slice of his favorite pizza. That confirmed that he wasn't feeling well.

But what was going on? Other than the physical symptoms and general tiredness, both kids still had adequate energy to play with their toys and with each other.

On Friday, Elizabeth had a slight runny nose. Both kids woke up several times that night.

On Saturday, Matthew drooled constantly. Elizabeth's nose needed frequent wiping.

Through Friday and Saturday, Matthew was drinking very little almond milk. He was drinking very little iced water. I thought that was strange. And he often put his finger in his mouth.

I finally checked their temperatures on Saturday afternoon. Both kids were at 100 degrees (Farenheit).

Then I noticed Matthew's hands and ankles had more red dots.

Mother's instinct or paranoia or lucky guess?
I suspected hand, foot, and mouth disease. I tried to look in his mouth as well as I could and spotted a sore in the back of his throat. That explained the drooling! It hurt to swallow his own saliva.

It is caused by a virus that is apparently common for young kids to catch. In an after-hours call to the pediatrician, I was told, "there is no special medication for hand, foot, and mouth disease. Ibuprofen will help provide comfort from a painful throat and high fever. Let it run its course. He can return to school when he is fever-free and no longer contagious."

Sigh.

Conversation Book: Daddy's Birthday

2011-09-03T05:00:00.087-05:00

The kids and I surprised Bill on his birthday last week. When he came home from the office, we had balloons and his favorite food on the table.

It was a no-green vegetable kind of celebration, with his all-time favorite food - regular crust pepperoni pizza! It was shortly followed by an ice cream cake roll and Betty Crocker's blueberry muffins as his cake. Matthew helped blow out the candles on the "muffin cake." Then both kids had fun helping him open his birthday gift.

This wonderful memory ended up in Matthew's conversation book, which he takes to school to show his teacher to encourage more verbal expression, among many benefits I outlined in a previous blog entry "Conversation Book: Grant's Farm".

He is always eager to show his conversation book to his teacher. The photos are very relevant to him and they remind him of things he can try to talk about and share. When I say talk about, I really mean he can read the short narratives I wrote with each photo. It is also being used to help break the ice between him and his peers, as he seems to be shy around his 4 or 5 classmates. As a secondary benefit, he gets some reading and comprehension practice.

I replace the photos every week to keep the album fresh and it gives him something new to share and talk about.

Related post:
Conversation Book: Grant's Farm

Finding His Words

2011-09-01T17:12:00.001-05:00

After a little over a week of no potty accidents at school, Matthew wet his shorts twice yesterday. The hourly potty timer they had for him was not set, which happens to me at home too. And when I forget to set it, he is more likely to wet his shorts unless I remember to take him to the bathroom. He is still learning. And so am I.

He has demonstrated on several occasions that he can hold it in and knows when he needs to pee. He grunts and does the little potty dance. He knows the difference between wet and dry although he doesn't mind being wet.

He just needs the words to express this need. Since I am encouraging spoken language with him, I am not reminding him how to sign "potty." Instead, I prefer to show him the written sentence "I need to go potty" since he can sight read those words. And I know it will be a matter of time before he will spontaneously and independently say "I need to go potty" when he needs to go.

The first time he wet his shorts, his preschool teacher, Erin, noticed that he ran to a corner of the room and had a funny look on his face - the kind of look that says, "I need to go potty." He just couldn't find the words. She was going to take him but he preferred the paraprofessional (Dena) in the class to take him, as she usually does. He refused to go with Erin (he fondly refers to her as "E-in". So they went over to Dena (he fondly refers to her as Dee-ya) together.

Erin said, "What do you want to tell Ms. Dena?"

Matthew slowly but firmly said, "I want to tell E-in BYE!"

Erin said, trying to hide a chuckle, "Why do you want to tell me bye?"

Matthew slowly and clearly said, "I need to go potty, Dee-ya."

The second time he needed to go, Erin says he marched right to the front door and pushed the Go Talk button we have up there with a toilet on it. It says "I need to go potty." Unfortunately, it was just too long of a walk to the restroom. He ended up wetting his shorts but HOORAY for initiating to go BEFORE it happened.

He is learning. And he is finding his words.

Conversation Book: Grant's Farm

2011-08-31T16:54:00.000-05:00

I started a "conversation book" for Matthew to take to school. I got the idea from a down syndrome education online article "Reading and writing for infants with Down syndrome (0-5 years). (Highly recommended resource!!) It is a photo album with photos of what we did during the week or weekend. I have the photo on one side and on the adjacent page, a short sentence about the photo written from his perspective.

The short narratives I write in the photo album aren't intended to
"test" his reading ability. I have underlined words that are not (yet) in his sight word vocabulary. So except for the underlined words, he can
read and understand the rest. The short sentences help him tell his teacher about what he likes (or does not like) or what he did recently.

I change the photos in the album every week to keep it fresh. He loves looking at photos. And his teacher tells me that he's always excited to show the photos to her.

In a nutshell, here's what I hope to achieve with the conversation book.
- encourage more spoken and spontaneous speech and language. He understands so much but has difficulty in expressing his thoughts.
- use his sight reading (a major strength) to give him the language to express his thoughts.
- encourage speaking in sentences.
- encourage social skills and turn-taking. His teacher had a great idea to also use his conversation book as an ice breaker with his peers since he tends to be shy and quiet around them.
- give him the language he can use in talking or thinking about things he likes and his experiences.
- it will also be a good way for his teacher to get to know him better.
- it's a good opportunity to practice reading and comprehension. He is highly motivated.

Grant's Farm
The first set of photos I put in his conversation book was about our trip to Grant's Farm.

Here's a video of him feeding the goats.

After a week, I replace the photos in the album with photos of a different and recent experience. A few of the old photos are displayed on our refrigerator for the following week but without the sentences. Instead, I use them to just point out different things on them. At the same time, I write short sentences on a small white board for him to read to me, giving him the visual words that I think he might want to say to help him tell me about the photos. So instead of just giving him the auditory input, "say this...", I make use of his visual memory (a common strength in children with Down syndrome) and his ability to read.

Toy Review Tuesday: Foam Soap on Glass

2011-08-30T05:00:00.002-05:00

Bath foam soap is our alternative to using shaving cream as a sensory tool. It's non-toxic. It's not sticky or slimy. It's like hair mousse.

I've allowed them to use the outside of our sliding glass door as their canvas. It's much easier to clean up outside and less worrying about messes. Sometimes they use their hands. Most times they use a paintbrush.

Elizabeth is mildly sensitive to textures so this has been a good activity to expose her to this mushy, foamy texture. Matthew generally doesn't like messes and will ask for his hands to be wiped clean if there is just a little dirt on it. Bill was anti-mess when he was a kid. But Matthew will tolerate textures as part of an art activity. He also doesn't mind bubble solution all over his hands or legs. And he doesn't mind ink or marker on his hands.

Painting with foam soap has kept them entertained (at least for a few minutes) on nice, warm days outside. Using it to paint a vertical surface either with hands or a paintbrush is good for encouraging wrist strength and a good way to promote being upright instead of slouched in a chair (if they have a tendency to slouch). Not to mention, it's fun for them to get creative, make a mess, and not get into trouble. (Both kids know that I don't like messes. When Elizabeth makes a mess, she points to it and says "mess." If I give Matthew a paper towel, he will usually, not always, help me clean up messes.) They're helpful and intuitive and I love them both so much!

Potty Time! (Struggles and a Solution)

2011-08-29T16:24:00.000-05:00

Potty training has been a wild roller coaster ride for us since after Christmas 2010 (when we started potty training Matthew in earnest). Up until today, some days are good, some exceptionally good. And then there are bumpy days when I have a washing machine full of Matthew's pee-soaked underwear and shorts. Bumpy days seem to be fewer and farther between.

Soaked clothes are easily washed. It was the resistant behavior that compounded those "bumpy" days and elevated frustration levels. Matthew's tactics include:
- the "flop and drop" - where he flops and drops to the floor making it hard for me to pick him up to take him to the bathroom.
- swatting at me or hitting me or Elizabeth if she is nearby. This earns him a time-out.
- saying "NOOO!!" and running away from me.
- not cooperating with the toileting process. Sometimes we would be in the bathroom for 20 to 30 minutes just trying to get his shorts back on and getting him to wash his hands. Then it would be time for another potty visit in 30 minutes so it felt like we were in the bathroom all day.

It's a process, right? But was this fighting part of the process too?

I tried to deal with the behavior as best as I could - some days better than others. The solutions I came up with only worked for a few days and then I had to think of the next best motivator for Matthew.

Sometimes taking small toys to the bathroom worked. But then they would distract him from doing what he was supposed to do.

Sometimes making it a game to get to the bathroom worked - like crawling to the bathroom or hopping to the bathroom or taking giant steps to the bathroom. But if there was something else more interesting, then my "game" concept failed.

Sometimes telling him what he could do after using the toilet worked. For example, "Let's go potty and then you can blow bubbles outside."

In the 2nd week of August, I began setting a cheap kitchen timer for every 50 to 60 minutes. I used to set a timer but just for myself to hear. However, this time he would hear it too. It took him about a week to accept this new form of "potty alert". And so far it's been very effective with him. Everytime he hears it, he shouts, "Potty time!" and Elizabeth says it too. It's quite amusing! And that has taken away the Matthew's resistance to me telling him to go to the bathroom. This time it was the alarm telling him to go - loud and clear.

Here is a short video of the timer going off while I'm showing Elizabeth some flashcards.

Of course, there are still times when he will still say no but it hasn't been as bad as it was before. He goes willingly this time. Wow! This timer isn't cheap. It's priceless!! Sometimes he gets to the bathroom before I do and already sits himself on the toilet.

At school, they take him every 50-60 minutes as well and I told them about the success I've had with the kitchen timer. So I think his teacher is using a timer for him at school too. For the past week, he has come home from school in the same shorts and underwear. It's something I always notice when I pick him up from school and I know he has had a successful potty day.

He is learning to hold it in when needed, as he knows that potty time is just 50 to 60 minutes away. He does the potty dance and grunts when he needs to go too. Our next step is to have him initiate, ie. telling someone verbally that he needs to use the toilet.

In the meantime, I'm hoping that the magical kitchen timer's effects doesn't wear off too quickly.

And I'm hoping I haven't jinxed myself by writing about it.

Ok, POTTY TIME!!

Book Review: Poke-A-Dot Old MacDonald's Farm

2011-08-26T22:34:00.000-05:00

Almost like popping bubble wrap, the Poke-A-Dot Old MacDonald's Farm book is addictive as much as it is educational. We bought it on amazon.com.

It can also encourage index finger isolation while counting animals and being rewarded with the plastic bubble popping. This book can keep Matthew and Elizabeth busy for a few minutes. Actually, Elizabeth has more staying power than Matthew.

This chunky board book makes for easy page-turning, but it is also heavy - at least for Elizabeth, who is 15 months old. The only flaw I have noticed is that sometimes the plastic dots like to pop more to one side than the other. Maybe a little more use will help fix that issue.

And as fun as it is to pop the plastic dots over and over and over, I must say that I don't let Matthew have this book unsupervised too often. Poke-A-Dot is fun and for Matthew, it can encourage unwanted sensory addictive behavior, when he acts like he's under a "poking spell." It is at that time when I personally feel that the educational value of the book is negated.

Otherwise, it's a neat book. I just have to look through it with Matthew and make it as interactive and engaging as possible without him going into a semi-trance.

Have you read it? What do you think?

Toy Review Tuesday: Gazillion Bubble Machine

2011-08-23T15:21:00.057-05:00

The Gazillion Bubble Machine "Hurricane" is one of the best bubble machines (for as long as it keeps on working). It truly spews out a gazillion bubbles. We've had ours since April and we have not had any problems with it. Best of all, Matthew and Elizabeth love it!

We make up a game of catching bubbles individually with a bubble wand. Just for fun, we also catch bubbles with kid badminton rackets.

Of course, there's the time-honored tradition of popping bubbles with fingers (a good opportunity and motivator to practice finger isolation), running through the cloud of bubbles or just wildly swatting at them.

The brand of bubble solution also probably makes a difference. We prefer the Gazillion Bubble brand solution over the Miracle Bubble brand solution. Hands down - even if Gazillion Bubble brand is relatively harder to find.

This machine is perfect for bubble fanatics like Matthew and Elizabeth.

Leukemia

2011-08-22T21:40:00.001-05:00

Illness usually comes with little or no warning. And when life is on the line, all other problems seem small in comparison. And we remember that health matters most.

Matthew's dear friend is fighting for her life against Acute Myeloid Leukemia (AML). Gabbie is 2 weeks younger than Matthew. Like Matthew, she has Down syndrome. She will be 4 years old in October.

Thanks to a mutual friend, we first met Gabbie and her family in June 2009. (See Weekend With Friends post for photos and video). Matthew and Gabbie were 20 months old. We marveled at Gabbie's independent walking skills when Matthew still needed full support when taking steps. Both kids had some degree of food aversion and/or pickiness. They played next to each other. In 2010 they both welcomed their younger siblings into the world, born just 4 days apart. They are both determined and persistent in their own little ways.

We had planned to get together again this year - right before the diagnosis. Needless to say, plans are on hold. We have faith that Gabbie will overcome this and that we will celebrate with them soon enough.

Chemotherapy has started, a 6-month treatment that she will undergo even through her 4th birthday. She is in the hospital this week with pneumonia, which is one of the possible complications for undergoing chemotherapy. Her mom's recent update: Gabbie has begun to lose her hair. She says, "I'm not sad about the hair loss because it's just hair and it will grow back. I'm sad about what it represents and what it is constantly reminding us - that Gabbie is very ill and fighting for her life."

It makes us very sad too.

If you would like, please visit Gabbie's CaringBridge page. Stop in if you can, say hello, and please keep her in your prayers.

About Leukemia In Individuals With Down Syndrome
I personally detest statistics but in the interest of putting a few things into perspective about leukemia and Down syndrome, here are a couple of facts I found.

- According to the National Down Syndrome Society (NDSS), approximately 1 in every 100 individuals with Down syndrome will develop leukemia compared with 1 in every 2000 children without Down syndrome.

- Compared to most children with AML, children who also have Down syndrome respond to treatment better, and have survival rates as high as 85%, compared with 50-55% for children without Down syndrome. However, children with Down syndrome have more complications than children without Down syndrome.

To learn more about treatment of AML, here is an article I found on CureSearch for Children's Cancer.

Related posts:
Weekend With Friends
Mi Casa Es Su Casa

Book Review: How Smart Is Your Baby?

2011-08-19T05:23:00.142-05:00

Certainly not a "What-to-expect-during-the-first-year" kind of book. It really is a "what-to-do, how-to-do-and why" kind of book.

If I had read "How Smart Is Your Baby?" by Glenn Doman and Janet Doman when Matthew was a baby, it probably would have been the key to convincing me to take Matthew for a neurodevelopmental evaluation with the National Association for Child Development (NACD) when he was younger than 3.

It is a book I wish I had when Elizabeth was born. There were no therapists to guide me with Elizabeth's specific development. I relied on the notes I diligently wrote and saved when Matthew was a baby. However, even with the developmental knowledge I had gained from Matthew's therapy sessions, I felt like I could have done just a little more with Elizabeth when she was a baby after reading this book and after having Matthew in a neurodevelopmental program. Not that Elizabeth needed extra help, but I could have used more activity ideas with baby Elizabeth and give her an even better foundation for her development.

The authors explain their neurodevelopmental approach when working with babies and children. They talk about designing developmental programs for kids with learning challenges, brain injuries, or diagnoses that caused developmental delays and eventually realized that children without delays can greatly benefit from their approach and techniques as well.

The book certainly offers a seemingly unconventional approach, with activities that I did not learn while Matthew was in Early Intervention (EI), even if I felt that EI was sufficient during that time. Specific activities by area of development including visual, auditory, motor, tactile/ sensory, and language are suggested and illustrated according to the baby's developmental stage, not by age. A recommended amount of time and frequency is assigned to each activity, which makes many of the activities easy to fit into the daily schedule. There are some activities that I personally would be hesitant to do without proper guidance unless I became comfortable enough to attempt.
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Overall, I really like this book and I would borrow it from the library again (or buy my own copy) if Matthew and Elizabeth ever have another younger sibling. After implementing Matthew's neurodevelopmental program and seeing progress, this approach makes sense to me. Elizabeth is along for the ride and is benefiting from all we do. Of course, nothing is one-size-fits-all. We all have to do what's best for our own children. But if you have the time, I recommend reading (even just browsing through) this book for a different perspective on development, valuable insights, and interesting ideas.

Have you read it? What did you think?

Toy Review Tuesday: Magna Doodle

2011-08-16T03:21:00.026-05:00

A classic. These days magna doodles are fancier-looking with so many variations available. Smaller sizes are more portable. Some even sport carry handles. Some have additional accessories like stampers. We have a small plain one in our bag of toys in the car.

However, I found that most of them do not have magnets on the back to allow mounting on a vertical surface such as a metal refrigerator door. So I modified ours by adhering a dozen 1-inch square magnets on the back. (I needed that many magnets for this large magna doodle to stay put.)

Matthew and Elizabeth think it makes a great refrigerator toy. I think it's great because writing or drawing on a vertical surface will help them improve their wrist and hand strength and stability.

Other reasons why using a vertical surface is good include:
- it motivates Matthew and Elizabeth to be upright, instead of possibly slouching when seated in a chair or on the floor;
- it encourages head control;
- it strengthens the arm and shoulder muscles;
- it promotes hand-eye coordination.

Please read "Improving Your Child's Hand Skills Using Vertical Surfaces" (.pdf file) for specific benefits on writing or drawing on a vertical surface.

National Geographic Kids & Down Syndrome

2011-08-13T22:12:00.002-05:00

Tonight, after a tiring and somewhat frustrating day, I was browsing the National Geographic Kids website for books, pictures, and videos to show Matthew. Several things looked great for Matthew such as the National Geographic Little Kids magazine, some short videos, and real-life photos of animals and nature. Matthew owns "Safari" from the Kids Readers books and likes it. Maybe it was time to get more titles from this series.

One little gem of inspiration (and Down syndrome advocacy) was in the News-People & Places section. I Have Down Syndrome--Know Me Before You Judge Me by Melissa Riggio. I absolutely loved what she wrote at the end about not able to change the fact that she has Down syndrome, but how she would change how people think of her. She also wrote, "Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you."

After reading her piece, I continued to browse the site for fun stuff for Matthew. But this time, with a smiling heart.

Book Review: Why Your Child Is Hyperactive

2011-08-12T05:12:00.000-05:00

Curiosity led me to borrow "Why Your Child Is Hyperactive" by Dr. Ben Feingold from the library. A friend had told me how this book helped her pin down some of her child's behavior issues to food. The concept intrigued me.

The behavioral effects of artificial colors (dyes), artificial flavorings, additives, and preservatives in food were discussed through case studies and observations made by the author in his many years of being a pediatrician and an allergist. Red and yellow dyes came across as the main culprits in causing undesirable behavioral changes such as unprovoked aggression and learning difficulties. Artificial colors and flavorings were also observed to cause physical symptoms in some people including severe headaches, nausea, and acute hives. Dr. Feingold also warns readers about misleading or incomplete ingredient labels on food, which I think is mostly addressed better today than it was in the 70's when this book was published.

I admit that I skimmed through at least half the book, trying to pick up interesting points and skipped chapters like "The Need For Research". Dr. Feingold suggests the San Francisco Kaiser Permanente Diet (food elimination diet) as an alternative to medication and even provides recipes at the end of his book. He mainly talked about how his clients were able to discontinue medication for ADHD (Attention Deficit Hyperactivity Disorder) within days or short weeks after shifting to a dye-free, artificial flavoring-free diet.

In addition to artificial colors and flavorings, he also names fruits and vegetables that should be omitted in all forms from the diet as they contain natural salicylates, which can pose a problem due to their innate chemical structure. The list of taboo foods included many that I like including almonds, apples, tomatoes, cucumbers, strawberries, oranges, and so on. I think the only fruits that were considered ok were grapefruits and lemons. Of course, all processed food with artificial additions were off limits too.

It's an old book but it served as a good reminder for me to read food labels and whenever possible, steer clear of artificial anything in food. Is this really possible in this day and age?

Have you read it? What did you think?

Updated Health Guidelines for Children With Down Syndrome

2011-08-04T15:42:00.001-05:00

Hot off the press (as of July 25, 2011): "Clinical Report - Health Supervision For Children With Down Syndrome". We will be sending a copy to Matthew's pediatrician. I am assuming that most doctors are appreciative of updated and important information shared with them.

Was Matthew Ever A Runner?

2011-07-31T21:00:00.001-05:00

I was asked this question last week.

Matthew is an escape artist. He doesn't take off running 100% of the time but the times he did were enough to make me think of ways to help him stay where he's supposed to or at the very least, slow him down.

When Matthew was just over 3 years old, I took him for an echocardiogram to check on the murmur (trivial amount of tricuspid regurgitation) as a baby. It was also required pre-op procedure for his tonsillectomy, adenoidectomy, and bilateral myringotomy (ear tubes) back in October 2010. The waiting area was just off of a maze-like hospital hallway. Matthew decided to explore so I trailed him. He started out walking a few steps and then ran. I called out, "Matthew! Turn around and come back this way." He stopped for a second, looked at me over his shoulder, gave me the "catch-me-if-you-can" smile, and then took off running and laughing down the hallway and turning a corner or two.

Another time, we were at the pediatrician's office. The waiting area was not enclosed and it felt more like being in an open mall. Elizabeth was seated and buckled into the sit 'n stand stroller. Matthew was seated, facing me, on the little seat in the "stand" part of the stroller. There was no way to buckle him. I turned away from the stroller to hand Matthew's insurance card to the receptionist. Then I looked back at the stroller. Matthew was gone! I had only taken my eyes off of him for a few seconds. My heart skipped a few beats as I was frozen in place as I scanned the area. He was already more than 25 feet away from me, climbing on a chair in the waiting area of another doctor's office.

A much scarier instance of him taking off happened just a month ago. I was carrying Elizabeth, the diaper bag and had to push a heavy door open, so I had to let go of his hand momentarily. The door opened into a sidewalk but it didn't take much time for Matthew to dash into the street, which is usually busy. That took a few years off my life. Luckily, there weren't any cars at that time.

He also thinks it's hilarious to run on our driveway and head toward the street. I've learned to anticipate it and head him off before he builds any momentum. Otherwise, I just avoid being in that situation unless I had a good way to contain Elizabeth so she can be safe while I run after her big bro.

What I've Learned To Do
Redirect when possible. Last week, we were leaving one of his therapy sessions. On the way to the front door, there was a dance room lined with mirrors. The door was open. He decided that running full speed in the dance room while watching himself was more fun than going to the car to go home. I couldn't chase him down because I had the diaper bag on my back, Elizabeth with her baby doll in my one arm and a small lunch box in my other hand. Elizabeth was refusing to be set down and I did not have a stroller with me. After a few laps, I finally got a hold of him and quickly redirected him toward the door, telling him to wave and say "bye everyone" even when there was no one directly in sight. Having him do something else that he perceived as fun (ie saying "bye" and waving" helped stop the running. It (thankfully!) worked all the way to the front door and to the car.

When at the car, I tell him to touch our car or tap on it or knock on the door, especially if I'm carrying Elizabeth in my other arm. It keeps him preoccupied long enough for me to unlock the doors - I have to stick the key into the lock to unlock it. Then I have him climb in first. Once he's in, I walk around to the other side to put Elizabeth in her car seat and buckle her in. Then I walk back to Matthew's side to buckle him in.

Holding hands has been the most effective way to keep him near me, especially in the parking lot, stores, etc. It took a lot of practice for him and persistence on my part. Of course, it's harder when I have to carry Elizabeth with my other arm. Whenever possible, I find something that would contain either one or both kids. I have both of them in a shopping cart at a store. Or Elizabeth is in an umbrella stroller with Matthew helping me push so then, he is between me and the umbrella stroller or at least right next to me. He loves helping me with the umbrella stroller.

I have not resorted to using a safety strap or harness like this one (photo from amazon.com). Maybe I will someday. Maybe I should get one just as a back-up tool.

Another thing I'm trying to teach Matthew is to ask permission to go somewhere and not just take off. It's a work in progress though and I don't feel like I've gotten through on the "how to ask permission" lesson with him yet. That might sink in when he's older.

More Ideas & Suggestions?
I'm sure many moms with kids who elope have their own tried and tested strategies. If you have ideas or suggestions, we would love to hear them. Please consider commenting. Thanks!

Post-Orchiopexy and Inguinal Hernia Repair

2011-07-30T23:20:00.002-05:00

Bill and I cringe everytime we look at the incisions and stitches but so far, it hasn't been enough to bring on a fainting spell. It just looks like it would hurt to be even moving around. But just a day after his most recent surgical procedure, our little trooper seemed like his usual self. The pediatric urologist was right about how it would be hard to keep Matthew from unallowed activities post-surgery such as climbing, running, and other vigorous activities. From his experience, he observed kids with Down syndrome to bounce back almost instantly. Matthew does have a relatively high tolerance for pain.

It was in October 2010 (last year) at his pediatrician's office when we first learned he might need to have surgery. A visit to a highly recommended pediatric urologist in December confirmed it. We were able to push it off until this summer. We were told that it was important to get it done but not urgent.

July 27, 2011 was the day of surgery - an orchiopexy and inguinal hernia repair (also closing the inguinal canal to prevent a potentially bigger problem down the road). On the same day last year, Matthew had a sedated ABR (hearing test). In October 2010, he had a tonsillectomy, adenoidectomy, and his second set of ear tubes. We hope he won't need more surgical procedures or other procedures that require anesthesia for a l-o-n-g time.

We hid all the riding toys in the unfinished side of our basement. We encouraged him to sit and listen to music, play on his vReader, mobigo, and on my iPhone. We encouraged drawing, play-doh, and other fine motor activities. But as hard as we tried, it seemed that he couldn't bear to miss a day of rough-housing with his little sister and annoying the cat - climbing up and down the living room chairs, in and out of the ball pool, running after the cat, and tickling Elizabeth.

The Day of Surgery
Matthew and I were at the hospital by 6:30am. Bill and Elizabeth stayed home. Surgery was at 8:30am. He was out of surgery by 9:45am. While recovering in the hospital, a few hours after surgery, he was in good spirits as long as I offered him a bottomless supply of apple juice and graham crackers. We were discharged at 1:45pm on the same day.

The caudal block, which is a regional anesthesia injected into the end of the spinal canal and administered in addition to general anesthesia, proved to be a very effective pain reliever for Matthew. He didn't need the tylenol with codeine until 8pm that evening.

Step Back in Potty Training
Potty training has taken a back seat and we have him in pull-ups all day instead of big boy underwear. We also figured that the pull-up would help keep the lower incision site dry. The discomfort in *that* area is making him go in the toilet more challenging than it was as he fusses more about using the toilet than he used to. Despite the resistance, he still has many successes at holding and keeping his pull-up dry. However, he finds it more comfortable to poop in the pull-up. We'll get back into it when the incisions have healed and the bruising is gone.

Book Review: Count Us In - Growing Up With Down Syndrome

2011-07-29T14:58:00.002-05:00

"Give a baby with a disability a chance to grow a full life. To experience a half-full glass instead of the half-empty glass. And think of your abilities, not your disabilities" - Jason Kingsley (direct quote from the book).

Jason Kingsley and Mitchell Levitz - two young men with Down syndrome - were born in the early 70's, an era when doctors mainly suggested institutions as the main destination for babies with Down syndrome. Their parents disagreed and gave their sons opportunities to develop their potentials. Jason and Mitchell authored "Count Us In: Growing Up With Down Syndrome", which was published in 1994, when Jason was 20 and Mitchell, 23.

The book is in Jason and Mitchell's own words and is a compilation of transcripts of their unedited conversations, bringing out their personalities, wit, and humor. I found it fascinating to learn about their challenges, accomplishments, and general outlook in life through their eyes and minds. Topics included their friendship, their feelings and thoughts about having Down syndrome, their ideas of fun, girls, sex, marriage, children, beliefs, traditions, politics, their experience with loss and grief, their journey to becoming independent, and their dreams for their future.

Everyone - with or without Down syndrome - is different. Jason and Mitchell's opinions and perspectives may not be shared by other people with Down syndrome. In this regard, what a powerful statement this book makes in advocating the full potential of people with Down syndrome! It quashes the stereotypical views that people with Down syndrome "are always happy" or "are suffering". It presents people with Down syndrome as fully capable of learning and having their own opinions and dreams, just like everyone else.

Having Down syndrome may mean being on a slower path to a destination but in life, isn't how we get there more important than when we get there?

Have you read it? What did you think?

Toy Review Tuesday: Tunnel 6'

2011-07-12T15:21:00.043-05:00

Tons of fun!

Hours of fun!

Lots of laughs and squeals!

For everyone! Well, unless you're too big to crawl through in which case you'd get stuck or have a hard time crawling through this 6-foot fabric tunnel. Ask me how I know this.

Believe it or not, short little me had a hard time army crawling through. (I can hear you laughing from here.) The only time I tried, Matthew and Elizabeth thought it was so funny that they crawled in right after me. Of course, I couldn't get through as fast as they could so they ended up crawling right on top of me in that very tight space. And of course, they thought that was even more hilarious. After two or three times of being crawled on, I eventually inched my way to the other side. As much as I loved how much they enjoyed this, I never attempted to crawl through again.

Bill tried crawling through the tunnel too and yes, he didn't make it out the other side. I decided to tell him about my tunnel experience AFTER he was stuck. Insert halo here.

The Big Boy Bed

2011-07-11T21:54:00.000-05:00

For some parents, a toddler climbing out of the crib is the sign for transitioning from crib to big kid bed. Sometimes the transition comes hand-in-hand with potty training. Others may have had to transition, not from a crib, but from cosleeping in the parents' bed. And I'm (wildly) guessing that in a few cases, it's the child that asks for a big kid bed.

Whatever the reason, the transition is necessary at some point. Timing varies for everyone, depending on circumstances and child and whether the parents are brave enough.

Lucky for us, Matthew had never attempted to climb out of his crib. We're still in the (loooong) process of potty-training but that isn't a consideration for us since Matthew is in a pull-up at naptime and a night-time pull up at night. He's in underwear the rest of the day though. And at his current language processing level, he would ask for ice cream (he says "I want ice cream please) but it is unlikely that he would ask for a big boy bed. He likes his brush teeth-read books-sleep in crib routine.

Like many parents, we had many questions before the transition.
Is he ready to be out of his crib?
Will he transition well?
Should he go to a toddler bed or twin?
Should we take his toys out of his room? And books?
How much are we spending on a new twin bed, mattress protector, and sheets? What if he gets up in the middle of the night and wanders out of his room? What if he wanders into Elizabeth's room and wakes her? Or downstairs? Or outside?

The Big Boy Bed
After much deliberation and making phone calls for quotes on twin beds, we finally decided to transition him to a full bed. We moved the full bed from our guest room to his room. We have an extra queen mattress that will go into the guest room.

The big boy bed was extremely well received. Both kids were very excited. Initially, all the jumping, playing, and rolling on it make it seem like it wasn't going to work. Was Matthew going to be playing all night on his new bed? Oh boy!

Since transitioning on Sunday, he has taken 2 naps and had a good night's sleep on his big boy bed without incident. So it's looking like we won't need to buy a new twin bed, saving us at least $250. We just needed an extra mattress protector and extra sheets. His new big boy bed is on the floor with no safety rails. If he rolls off, it's only a 7 to 8-inch drop. The box spring and bed frame will be added on when he's older.

The toys and books stayed in his room.

Safety Considerations
We have a Summer Infant Best View Handheld color monitor set-up in Matthew's room. We like to be able to see how and what he's doing in his room.

To address the issue of potentially wandering, we installed a door knob safety cover on his door to prevent him (or at least slow him down) from opening it from inside his room. It may not be the best solution but it works at this time and it is temporary until we find something better. A door knob safety cover is also on Elizabeth's door so he can't open her door. A third door knob safety cover is on the inside of the front door.

We're also considering installing an extra lock out of his reach on the front door and the door leading to the garage.

The gate on the stairs is not easy for him to move. But it's not impossible. He's still not totally steady walking down the stairs. Maybe a bell on the gate at night will help as an additional "alarm system" that would probably have less chance of waking Elizabeth.

I still remember sleepless nights when Matthew was an infant. As a first-time mom with him, I learned to sleep with my ears on alert for every cry that needed my attention. Having him in a big boy bed certainly adds new meaning to "sleepless, restless nights".

Why and How I Teach Sight Words

2011-06-29T23:30:00.002-05:00

The brain hears by seeing - something I learned this year. An excerpt from the article Brain Hears Just By Seeing, "The brain's auditory cortex reacts to and categorizes stimuli even when you only see the sound being produced and can't hear it." This probably explains how Bill, when he was a child, could watch a TV show on mute and still understand it. He could lip read.

So if the brain hears by seeing, then the brain can hear speech sounds when presented with a written word. Of course, this would probably be more possible after having the appropriate and correct input once or a few times before it is able to "hear" the word correctly. For example, if the only language I knew was English, then I wouldn't know that the "j" in Spanish was pronounced silently, like an "h". But given the input or knowledge of the Spanish alphabet and/ or language, my brain would be able to recognize "Juan" and enable me to pronounce it correctly with an "h" beginning sound instead of a "j" sound like in "jump". My brain wouldn't hear anything either when presented with Chinese characters because I don't know the first thing about them.

The interesting research on how the brain hears what it sees encourages me to continue teaching Matthew sight words. With a second set of ear tubes and regular ear checks with an otoscope, Matthew's ears have been fluid-free and his hearing has been good as far as I can tell. But hearing levels can fluctuate. Background noise can be distracting. Since Matthew can read, his preschool teacher can show him the words "stand up" if he is unresponsive to verbal instruction. As soon as he sees the words "stand up", he stands up.

Signing vs. Speaking
Signing would've worked too to get him to stand up. Matthew and I communicated via signing when he was 15 months to about 2-1/2 years old. It served as a useful and helpful bridge to fill in the communication gap when Matthew wasn't saying as many words yet. In our experience, sign language seemed to help ease communication frustration (most of the time, not all the time) and increase receptive language skills.

He still signs a few words these days like "more" but he always pairs it with a verbal "more". Generally, we've dropped sign language. As soon as he started articulating more sounds and saying a few words, I decided it was time to encourage spoken language more than sign language.

Increase Speech, Articulation, Vocabulary
Aside from the research on the brain hearing what it sees, there are other benefits to teaching reading at an early age. Articles like "Teaching reading skills to children with Down syndrome" talks about teaching reading to help with speech, vocabulary, and working memory.

The book "Teaching Reading to Children with Down Syndrome - A Guide For Parents and Teachers" by Patricia Logan Oelwin catapulted me into introducing a few words of high interest to Matthew like Daddy, milk, cat, apple, Matthew, Mommy, and ball, pairing the words with pictures to provide a visual cue. What worked best for us included using words that were of high interest to Matthew and words he heard often in daily conversation and routines. He was 2-1/2 years old.

As he learned to read more words, his speech (verbalization/vocalization) and vocabulary picked up by leaps and bounds. Our suspicions of verbal apraxia were dispelled.

Speech therapy at school and using the SmallTalk Phonemes app on my iPhone has corrected many speech errors and improved his articulation of individual letters in the alphabet and a few blends. He says "Mommy" very clearly now instead of just "b" or "bahbee". He was substituting the 'm' sound with a 'b'.

Today, he can read over 110 words by sight without any pictures. He can read many of the words on the dolch list.

Our Favorite Tools and Resources
- Mentioned earlier, the book "Teaching Reading to Children with Down Syndrome - A Guide For Parents and Teachers" by Patricia Logan Oelwin was helpful to me.

- For articulation, iPhone app SmallTalk Phonemes.

- Homemade flashcards. I started with laminated cards with the word on one side and the corresponding picture on the other. It was easy to do with nouns. When we started to move into words on the dolch list I just wrote words on plain 3x5 index cards. I flash 5 to 7 new words a week and review several old ones. We keep the flashcard activity fast and brief.

- Homemade alphabet, number, and word videos, a couple of which I shared on my blog. (Click on "videos-learning". The link is also found in "View Posts by Category" on the sidebar.)

- Preschool Prep Meet the Letters and Meet the Sight Words DVDs, books, and iPhone apps. Matthew loves Preschool Prep.

Factors That Help Sight Reading
We only have one set of eyes and good, clear vision helps tremendously in allowing us to take in information, process it, and learn.

Matthew was around 7 months old when we took him for his first eye exam with a pediatric opthamologist. A little far-sighted than one would expect, the doctor said, but nothing that would require eyeglasses. His clogged tear duct that had been making his one eye gunky and crusty every morning finally cleared up when he was 10 to 11 months old. So surgery was not required to probe the clogged duct. After another eye exam at 16 months and 28 months and no major concerns, the doctor said he didn't require another eye exam until he was 4 years old unless he developed a problem before then.

It is Matthew's good vision that is partially responsible for allowing him to learn sight words. Other factors are his strong visual style of learning, good visual memory, fluid-free ears and good hearing, improving articulation and speech, and of course, high interest in learning to read.

Comprehension
I think comprehension will develop with exposure, practice, and maturity. He understands the meanings of individual words but learning to understand a story or an idea is harder to grasp - for anyone who is trying to learn a language.

Comprehension may also develop by pairing written high interest phrases or sentences with the corresponding situation. Moving forward to 3 or more-word phrases from 2-word phrases, I currently use plain 3x5 index cards to visually prompt him with highly used sentences. "I want more please", "Let's go home", and "Time to eat" are a few examples. Today, he came to me with something on his mind and slowly but clearly said, "I want help please." Unprompted.

In the bathroom, a list is posted as a visual prompt for his toileting routine. He can read it. I use it to prompt his next step in case he gets sidetracked with singing or self-talk.

One of Many Paths to Literacy
Learning sight words is just a beginning step in learning to read. To quote the Preschool Prep DVD:

"Learning to read is a combination of many skills including letter recognition, decoding skills, phonics, phonemic awareness, and memorizing sight words. Knowing sight words alone does not mean that a child can read but it is an important step on the path to literacy."

Toy Review Tuesday: Golf Tees

2011-06-28T03:21:00.001-05:00

Yuri relaxes in a chair. He's safe from excitable little hands for the moment. Still, he watches them, on guard and ready to get away if needed.

The kids are momentarily distracted with golf tees and styrofoam. They are fine tuning their pincer grasps to improve their fur-grabbing powers.

Sometimes we stick golf tees into styrofoam. Little circles and/ or numbers drawn on the styrofoam with permanent marker as a target for the golf tees makes the activity a precision and counting game. Written letters on the styrofoam are great for reviewing the alphabet too.

Play-doh has also proven to be a good material to poke with golf tees.

When the kids are done with the golf tees, they turn their attention back to the cat. Poor cat. Poor, tolerant cat.

Wish Upon an iPad

2011-06-23T00:00:00.001-05:00

We all have wishlists. Commonly, it revolves around what we wish to receive or have - new shoes, a massage, an iPad, etc. I have such a list. I also have another wishlist - one that might seem more like a to-do list, in a way. I wish to contribute to society, to make a good difference in the community.

In April, when I first learned about the Down Syndrome Research and Treatment Foundation's (DSRTF) fundraising contest for their +15 campaign via email, I knew right away that I wanted to do it. I had attended the Dr. William Mobley's presentation at our local Down Syndrome Association annual conference last year. He is one of the researchers whom the DSRTF supports. I was awed and highly interested in his research findings - the continued progress from hypothesis to lab experimentation to very probable treatments - for preventing the early onset of dementia and improving learning for people with Down syndrome.

The top fundraiser would win an Apple iPad - one of today's most coveted gadgets, especially within the special needs community. I told Bill I wanted to win the iPad, not for us, but to donate to Matthew's preschool. I just thought, "What a great opportunity to raise money for Down syndrome cognition research and potentially help other kids!"

After a brief, informal meeting with Matthew's speech & language therapist, we determined that an iPad would certainly be an asset for the Early Childhood Special Education program. Many preschoolers with special needs such as Autism, speech and language delays, and developmental delays, who can use the iPad's touch screen, can benefit from using certain iPad apps. We've seen it in the news.

"Parents turn to iPad apps for children's therapy"
"iPad apps help developmentally disabled N.J. students learn"
"iPad Apps That Help Autistic Children's Development"
"EDUCATION MATTERS: Schools using iPads to help autistic students"
"iPad therapy helps children with special needs 6/17/2011"
"How devices like the iPad are helping special needs children, hospital patients"
"Dublin Schools Using iPad As Educational Tool"

I've seen it first-hand with how Matthew independently navigates my iPhone (we haven't saved for an iPad yet) and how much he's learning. He looks for the apps I downloaded for him. He can practice speech sounds with SmallTalk Phonemes. He reviews his letters, colors, and shapes with Preschool Prep's "Meet the ___" series apps. He hears his words back with Talking Hippo or Talking Roby. He learns more sight words with various sight word apps. He builds his vocabulary with various kindergarten.com apps.

With help from family and friends, we started fundraising in April. The deadline was June 21, 2011. 3 garage sales, 1 month of selling pretzels, and several generous individual donations later, we raised $2,211.

Six hours ago, I received an email from the DSRTF informing me that we (Bill and Ria) were the top fundraisers. We were getting the iPad. Wow! I couldn't believe it. I was ecstatic! I had never done anything like this before.

We raised money and awareness for Down syndrome cognition research that will benefit thousands of people living with Down syndrome. Matthew's preschool will get the iPad, which will benefit more kids with special needs.

We owe many people many thanks. Bill and I would not have been able to do this on our own. Added on my to-do list: write iThank You letters to everyone who put in long hours preparing for the garage sale, worked during the sale, took care of the kids while I was busy at the garage sale, sponsored prizes for the garage sale raffle, donated on our fundraising page, bought pretzels, and wished us well.

I got my wish.

Related posts:
Supporting Cognition Research via plus15
2-Day Garage Sale Benefit For Down Syndrome Research

Toy Review Tuesday: Bubble Wrap

2011-06-21T03:21:00.014-05:00

"Warning: To avoid danger of suffocation, keep plastic bag away from babies and children. Do not use this bag in cribs, beds, carriages or playpens. The plastic bag could block nose and mouth and prevent breathing" -- a common and standard warning found on plastic bags and similar plastic sheets.

I remember enjoying popping small bubble wrap between my fingers when I was younger. And I still do to this day. It's oddly soothing for me.

Despite the warning, I laid a sheet of bubble wrap on our floor. It was an open invitation for the kids to pop the air-filled plastic bubbles.

The bubble wrap made it extra fun and motivating for Matthew to practice jumping -- not that he really needs any extra motivation to jump these days ever since acquiring lift-off with both feet simultaneously. He'll jump just for fun even without bubble wrap but it was more fun to hear pop! pop! pop! with every jump. Of course!

What big brother does, little sister tries too. Matthew can jump about 2 inches off the ground and land feet first on the bubble wrap. Pop! Pop! Pop! Elizabeth positions herself -- arms to her side, feet wide apart, knees bent -- then tries to straighten up to jump but lands bottom-first on the bubble wrap. Pop! Pop! Pop! Then she laughs and does it again and again. And again.

We're adding "jumping on bubble wrap" to our list of fun gross motor activities (done with adult supervision).

Hot! Hot!

2011-06-19T15:00:00.000-05:00

Preheating the oven to make dinner, Bill turned around to see Elizabeth digging through her cup drawer. She found a koozie cup, put it on her hand like an oven mitt, toddled over to the oven and, in her sweet toddler voice, said, "Hot! Hot!" Bill was so amused and captured the moment on camera.

I recaptured the moment with one of my sketching pencils, which had been stored away since 2004. I found myself to be out of practice but not totally out of touch with the art. It was like trying to ride a bicycle again after not having ridden for many years. The sketch could've been better but still turned out to be a perfect Father's Day gift for Bill.

As soon as this happy memory is framed, it will go on one of the walls in our house.

As soon as I find the time, I will sketch Matthew too.

TalkTools Straw #3

2011-06-16T09:22:00.004-05:00

Ever since starting straw therapy with Matthew, I've been trying to offer drinks using his therapy straw only so he gets as much practice with it as possible.

Longer than straw #1 and straw #2, I was worried that Matthew would have a hard time drinking with it.

I was wrong. Not the first time he has proven me wrong. He can get the juice or water from the cup all the way up the long straw into his mouth, which may not seem like a big deal for any typical person, but in my eyes, that's good "sucking" power! The lip block is set at 1/4-inch from the tip of the straw and it is a tactile prompt for Matthew to use his lips to suck from the straw instead of wrapping his tongue underneath it (suckling like a baby would with a bottle nipple).

When drinking, I always hold his cup anyway to keep the straw in place so the length wasn't an issue for him. And we still used the take 'n toss plastic cups even if the straw was more than double the height of the cup.

He was on straw #3 from mid-April to the end of May. Moving forward with straw #4!

Preschool Graduation 2011

2011-05-26T22:07:00.000-05:00

Matthew graduated from his first year of preschool. He confidently walked up to his teacher when he was called, stopping halfway to soak in the applause and clapped along with the parents and grandparents who were there, making everyone laugh and smile and applaud even more. That's Matthew - my little guy who applauds himself and others for any job well done.

He received his preschool diploma. Who would've guessed that my confident little guy had a tearful first two weeks of preschool in November? On his mini-graduation day, he performed right alongside his classmates, moving to the music without missing a beat. They performed to the songs:
- Drive My Car by Laurie Berkner Band;
- We Are the Dinosaurs by Laurie Berkner Band;
- Animal Action by Steve & Greg;
- 5 Little Monkeys Sitting in a Tree by Steve & Greg;
- The Freeze by Steve & Greg.

He may have pouted in the very beginning when he was overwhelmed with the classroom full of unfamiliar grown-ups but he perfectly fine after the first song. After that, he just had fun dancing and being himself, doing what they had practiced for several days. Everyone was SO cute and they all did a wonderful job - teachers AND preschoolers.

One of his new favorite songs is "Drive My Car" by Laurie Berkner Band. I downloaded the song on my laptop and since Bill wasn't able to attend the graduation, Matthew showed off his dance moves at home as soon as he heard it playing on my laptop. And we played it again and again and again...and again, until he got tired.

The song is still playing in my head. He is sleeping now and I have a smile plastered on my face as I replay his graduation in my mind. He actually has pretty good sense of rhythm. I foresee music lessons in his future. Also many months of practicing jumping and improving tone, balance, and strength has resulted in lift-off when he jumps! That in itself deserves a big round of applause!

He'll be starting preschool summer class in the first week of June. And he starts his second year of preschool in August. I was sad that this was the last day that he would see some of his classmates as they move on to kindergarten. But as sociable as he is, I'm sure he'll be high-fivin' and offering hugs to new friends in the coming schoolyear.

2-Day Garage Sale Benefit for Down Syndrome Research

2011-05-16T09:35:00.030-05:00

We had a successful 2-day garage sale benefit on May 14 & 15, Saturday & Sunday. We are truly humbled and thankful for the outpouring of support from everyone who offered helpful suggestions and ideas, took time out of their day to help, donated, and made the event possible and successful. This is part of our efforts to raise funds for the Down Syndrome Research and Treatment Foundation's (DSRTF) +15 campaign.

The DSRTF is a national non-profit organization that funds important biomedical research projects around the country. These research projects are focused on developing treatments that would improve cognition and prevent the early onset of Alzheimer's for thousands of individuals with Down syndrome. I love how they don't prioritize prenatal diagnostic-type of research unlike the National Institutes of Health (NIH), who directs majority of federal funding (what little is allocated for Down syndrome) toward prenatal testing for Down syndrome.

The National Down Syndrome Society (NDSS) cites that "25% or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. In the general population, Alzheimer's disease does not usually develop before age 50."

I don't know what the future holds for Matthew. I know that I will be 65 years old when he turns 35. I know I would be very sad if he develops Alzheimer's early and lessens his ability to live independently, especially since it may take more work and time for him to achieve independence. If that was the case, he would've worked so hard at something only to enjoy it for a fleeting moment. I know that's probably excaggerating and worrying myself for no reason but as his mother, it's my job to worry, isn't it? If he happens to be 1 in the 25% estimated individuals who develops Alzheimer's early, it would be nice to have some research to know if it is preventable and if so, how to prevent it.

50 PERCENT CHANCE OF SUN?
The sun never appeared and it drizzled and misted all day, both days. But despite the rain and cold (high 50's to 60's), we had a relatively great turnout and raised a total of $686.45 selling kids' clothes, food, books, and toys. YAY!! This catapulted us to achieving 25% of our $5,000 goal.

THE PROCESS
The two weeks leading up to the garage sale weekend were hectic for everyone involved.

I took care of flyers, garage sale signs, donations for the raffle, the garage sale ad in the newspaper and craigslist, tagged some items, and put up garage sale signs at both entrances to our subdivision. I would've put up more if there was enough time and if I didn't have the kids with me. I made sure the newspaper ad had a line "Benefit for Down syndrome."

My wonderful sister-in-law took care of presorting all 30+ big bags of clothes and pricing the items individually. She helped me get the word out on facebook. She made some yummy Thai sticky rice (the recipe is in her cookbook "Introduction to Asian Cooking" by Kristin Enkvetchakul, published in 2006). She and her husband let us borrow their awesome commercial-grade hotdog machine.

Bill shuttled the boxes of clothes and other supplies from her house to ours and we set it all up in our garage the night before. If I were smarter, I would've started setting everything up in the garage 2 or 3 nights before. I also baked chocolate crinkles the night before. We ended up going to bed at 2am. Then I got up at 5am to straighten whatever I could before we opened at 7am.

Saturday was very busy and I was thankful to have wonderful friends and family to help. We were on our feet all day. I didn't even have time to take pictures during the sale so I took pictures after everyone had left.

Most of the people whom we didn't know personally found our ad in the newspaper. One couple found my ad on craigslist and came specifically because I had advertised it as a benefit for Down syndrome. They lived in a neighboring city and have a daughter with Down syndrome. It was wonderful to make yet another DS connection.

On another note, my thoughtful nephew made this sign to put on the door to the kitchen. It says, "Employees only."

WHAT'S THIS ABOUT PRIZES?
I had a radical idea to offer prizes at our garage sale. Shoppers are issued a raffle ticket for every $5 spent. It actually helped encourage most people to either buy more or donate what would've been their change. We also had a few friends come to donate but not buy anything. 2 raffle tickets were issued for every $5 donated (without a purchase).

There were 10 prize buckets to choose from. The most popular one was for movie tickets, followed by restaurant gift certificates. I am extremely thankful for the prizes that were donated by generous business owners and friends in the area.

Matthew drew the winners at the end of day 2 of the garage sale. It was the best random way to pick winners and a great way to practice some functional math skills, i.e. I'd ask him to give me one ticket only from each little tub. If he gave me 2 or more, I wouldn't take any tickets from him.

MAY 21, DAY 3
We've decided to do another garage sale this Saturday, May 21, while we still have everything set-up in our garage and will be adding more to what we have. We It will sort of symbolic of Down syndrome with the triplication of the 21st chromosome. The date "21" would signify the 21st chromosome and it would be the 3rd day for our garage sale.

Elizabeth's 1st Birthday Party

2011-05-02T02:05:00.000-05:00

Our little girl has turned 1. We threw a party fit for a queen - our "Queen Elizabeth".

The house was filled with chatter and laughter of family and friends. The kitchen counters were lined with a wide selection of food - pulled pork, barbequed beef, smoked salmon, fried chicken, pizza, pasta salad, coleslaw, buttered corn, fresh strawberries, canned peaches, and a frozen custard bar offering a variety of toppings to create your own deliciously sinful treat - none of which I cooked since there was just no time.

And of course, we had a birthday cake topped with a tiara and a little cake just for Her Majesty.

She wouldn't touch it with her bare hands. But she happily dug out a little cave on its side with a spoon, trying not to get too much on her hands and not getting any in her mouth.

She happily played with it for a minute until she got some icing on her hands. Then she was done.

After the cake ceremony, big brother and all the other little kids helped with opening presents. Fun for everyone!

The backyard beckoned. Kids tried to build sand castles.

The pavement needed sprucing up with some sidewalk chalk.

The bigger kids swung on the tree swing in the backyard.

Then we got out the "bubba", as Elizabeth says, starting out with the regular dip-and-blow method...

...and eventually bringing out the bubble gun...

...and the gatling gun of bubbles, as Bill calls our battery-operated bubble machine.

To our dear Elizabeth, Happy Birthday! May you be showered with more blessings. May you have your cake and eat it one day. May your days be filled with royal bubbles of happiness!

Toy Review Tuesday: Play-Doh Cookie Monster's Letter Lunch

2011-04-26T15:21:00.001-05:00

Play-doh + letters + pretend cooking + feeding Cookie Monster = FUN!

Matthew favorite thing to do is to feed Cookie Monster play-doh letters and the letter mold itself. It's the ideal play-doh set for Matthew, especially since he loves letters. He recognizes all of them and enjoys singing the alphabet song.

The placemat has letter and food outlines for a matching activity. I laminated the paper placemat (not pictured here) to preserve it. Now I don't have to worry about it getting wet or Elizabeth accidentally ripping it.

It definitely requires more refined fine motor skills than Matthew's current level of fine motor development. He can hold very small objects between his fingers with a perfect pincer grasp but cutting play-doh out of plastic molds calls for a higher level of precision. It makes for good practice for Matthew and I enjoy making the pretend food and alphabet soup for him.

I enjoyed it so much that I was still playing with the set even when Matthew and Elizabeth had already moved on to other toys. I love play-doh!

Supporting Cognition Research via plus15

2011-04-23T10:41:00.094-05:00

Sharing our personal stories, photos, and videos has raised awareness about Down syndrome. We hope you, our dear readers, have enjoyed following along as much as we have enjoyed sharing and meeting friends on this journey. Thanks for your friendship and encouragement. Thanks for reading!

Please consider helping us make a bigger difference in this world through the plus15 campaign. By supporting biomedical research to improve cognition, including learning, memory, and speech, by 15 percent, you will give Matthew and our friends with Down syndrome, more opportunities to full inclusion - academically and socially - and independent living as adults.

Our involvement in plus15 has a two-fold benefit. This fundraiser is a contest. The top fundraiser will receive an Apple iPad. IF we win, we will donate the iPad to Matthew’s preschool. Your contribution could help more children with special needs, such as Autism, who can benefit from its use during their therapy time. Please help us win the iPad for the kids!

We really appreciate your interest in helping!

Facts to Consider
Studies show that the life expectancy of someone living with Down syndrome has increased from 25 years to over 50 or 60 years over the past 3 decades. But cognitive abilities have not improved at a similar pace. Current advances made in cognitive research are promising of positive change, such as avoiding the early onset of Alzheimer’s disease. The National Down Syndrome Society (NDSS) cites that “25 percent or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. In the general population, Alzheimer's disease does not usually develop before age 50.”

Federal funding for Down syndrome research is only $55 per person. That's about 95% less on average than what the government spends on research for similar disabilities. A big chunk of federal funds goes to research to develop more tests to merely detect Down syndrome prenatally, instead of toward cognition research. We have collated data in the following tables as gathered from the sources listed below.

2008-2010 NIH Funding for Various Medical Conditions
CONDITION	US POPULATION (est)	2008 NIH FUNDING Million $	2009 NIH FUNDING Million $	2010 NIH FUNDING Million $
Cystic Fibrosis	30,000	90	86	86
Parkinson's	1,500,000	152	162	154
ALS	30,000	43	43	47
Huntington's	30,000	51	57	65
Multiple Sclerosis	400,000	169	137	133
Crohn's Disease	400,000	51	55	66
Down Syndrome	400,000	17	18	22
Fragile X	17,000	26	27	25
Autism	560,000	118	132	160
Duchenne MD	45,350	22	27	33

2008-2010 NIH $ per Capita Amount for Various Medical Conditions
CONDITION	US POPULATION (est)	2008 NIH $ per CAPITA AMOUNT	2009 NIH $ per CAPITA AMOUNT	2010 NIH $ per CAPITA AMOUNT
Cystic Fibrosis	30,000	3,000	2,866	2,866
Parkinson's	1,500,000	101	108	103
ALS	30,000	1,433	1,433	1,567
Huntington's	30,000	1,700	1,900	2,167
Multiple Sclerosis	400,000	422	343	333
Crohn's Disease	400,000	128	138	165
Down Syndrome	400,000	40	45	55
Fragile X	17,000	1,529	1,588	1,471
Autism	560,000	211	236	286
Duchenne MD	45,350	485	595	728

Sources:
2008 data from Dr. Brian Skotko’s testimony before the Down Syndrome Congressional Caucus in February 2009 (http://www.brianskotko.com/images/stories/Files/down_syndrome_congressional_caucus_feb_09.pdf) as provided by M.M. Harpold, DSRTF based on 2009 NIH Data (http://report.nih.gov/rcdc/categories/).
2009 & 2010 data sourced and adapted from 2011 NIH (National Institutes of Health: Estimates of Funding for Various Research, Condition, and Disease Categories) http://report.nih.gov/rcdc/categories/Default.aspx. Note that I calculated the 2009 and 2010 NIH $ per capita assuming unchanged population estimates from Dr. Brian Skotko’s 2008 data.

3 Possible Ways to Donate
To donate online, please click on Matthew’s photo below. Any amount would be helpful and appreciated.

Our fundraising page will open in a new window where you can donate online. Donations can be made anonymously, if you choose to do so. Online donations will be accepted until May 21, 2011. (Please be aware that this fundraising site automatically allocates 10% of the donation amount as a tip. Tipping the fundraising site is not necessary. You can select the option not to tip in the drop down menu before confirming your donation.)

If you would rather send a check, make it payable to "Down Syndrome Research and Treatment Foundation" and write "Bill and Ria" on the memo line. Please contact us so that we can send you more details. Check donations are accepted until May 14, 2011 because we have to get them to the DSRTF by May 16, 2011 in order for checks to count toward our total.

Donations are tax-deductible.

If you would rather donate a few minutes of your time, please share this post with friends on facebook, twitter, or on your blog, if you have one.

Thank you very much for your generosity and helping us spread the word! Your support of this great cause means a lot to us, especially to Matthew.

The link to our fundraising page is http://www.crowdrise.com/plus15/fundraiser/billandria.

Grab the button below for your blog.

Thanks again for your support of this great cause, and thanks for reading!

About plus15

plus15 is an initiative of the Down Syndrome Research and Treatment Foundation (DSRTF), a non-profit organization funding cognition research. When you give to the plus15 campaign, 100% of your money will go directly to funding cognitive research at major research centers around the country, including Johns Hopkins Medical Center, Stanford University, University of San Diego and University of Arizona.

Here is a short video made by the DSRTF:

Enjoying the Ride

2011-04-21T10:07:00.002-05:00

Some days we just have to sit back and try to relax. Let someone else take control and steer us in a direction, within reason, that we might not have taken otherwise. Some days, it's worth learning to appreciate the slower pace or little bumps along the way and enjoy the ride.

Parenthood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that they are exactly the person they are supposed to be. And that, if you're lucky, they just might be the teacher who turns you into the person you are supposed to be." ~The Water Giver

NACD Free Telephone Seminar on Down Syndrome

2011-04-20T08:00:00.002-05:00

The National Association for Child Development is hosting a free telephone seminar on April 27, 2011 at 8pm (CST).

This is Part 2 of a seminar on Down syndrome. Part 1, which was done in March, was very successful and packed with information. It is available as a free podcast on iTunes (search for "NACD" on iTunes).

Topics to be covered include:

- Understanding hearing--why it is such a huge issue with Down Syndrome and how to address the problems
- Speech--how it is affected by hearing, structure, and function
- Looking toward our children's futures:
Self-help skills, chores, behavior, and on becoming responsible
Creating a target
NACD Foundation--creating a different model for our children's future

The Conference Call number is (712) 432-0075. (This is a long distance call. If you do not have long distance services on your phone, Skype is a recommended alternative.)
The Conference Code is 662415.

IMPORTANT TIP:
When entering the telephone seminar, hit *6 to mute your line to avoid sharing background noise with everyone on the call. To ask a question, hit *6 again to unmute. *6 allows you to toggle between mute and un-mute.

We will be listening in on the telephone seminar. Will you?

Toy Review Tuesday: Slide - Indoor & Convertible

2011-04-19T08:40:00.098-05:00

An indoor slide is a fun thing to have especially when it's too hot, cold, or rainy to be outside.

It took me about 20 to 30 minutes to put our slide together. It is also actually convertible to a chair and table or bench. I haven't tried any of the other configurations yet though but here are a couple of photos of the side of the box.

I love that this slide generally isn't tippy. In our current configuration, which is pictured below, the only time it has threatened to fall on its side was when Matthew put most of his weight into pulling on the top sidebar. It's easy to climb with more of a wide step instead of a narrow ladder-type set-up. The slide is about 14 to 15 inches wide.

We've had this set since Matthew was a year old. Here he is in this video when he was 16 months old. Introducing the slide to him, I sat him at the top and encouraged him to slide down. He got the hang of it and learned to shift his weight forward to help propel himself.

Elizabeth, at 11 months old, is enjoying the slide too. She crawls up the steps and I help get her legs out in front of her at the top of the slide.

Matthew loves to slide on his tummy. He also doesn't mind sharing the slide and taking turns with Elizabeth.

Since Christmas, Matthew found it interesting to have various things go down the slide like balls, snowmen, cars, anything that fits and slides. So I've used this as a simple, mini speech and language activity with repeat phrases for him to parrot and practice articulation. Some examples are:

Go ball go!
Go car go!

OR

Ball slide down. Weee!!
Car slide down. Weee!!

New Parent Support Volunteer with Down Syndrome Association

2011-04-18T15:21:00.002-05:00

When Matthew was born in 2007, the first hour of his birth was a great celebration for us. The news that the doctors suspected he had Down syndrome sent us into shock and the hour of celebration was clouded with disbelief, worry, a loss of control, and sadness. The many days that followed were unfortunately filled with anxiety, uncertainty, loneliness, guilt, and grief on top of sleep deprivation and crazy hormones.

The early days of having Matthew home were physically and emotionally draining. Some days it was hard to talk to other people and smile while some days were manageable.

It was one of Bill's sisters who connected me to their neighbor, who was another mom with a 9-year old (at that time) with Down syndrome. She also happened to be a new parent support volunteer. I vaguely remember being asked if I wanted to talk to her. I think my initial answer in the first few weeks was "not yet."

There were many days when my mind was heavy with thoughts about possible medical issues, more bloodwork and doctor visits needed, independence as an adult, and protecting Matthew from discrimination and ridicule.

Almost a month after Matthew's birth, I received a letter in the mail from that mom. Reading her letter today still made me teary-eyed as I recalled the past. Her letter was congratulatory, very reassuring, comforting, encouraging, and insightful as she shared a little bit about her family and her own emotions when her son was born. She also included a mini photo collage of her son through the years, which I liked to see. (I was recently made aware that during the early weeks, some moms are reluctant to see photos or meet other kids with Down syndrome). At the end of her letter she wrote:

"Matthew will be the sunshine of your life. The challenges which you will face will be matched, or exceeded by, unexpected blessings."

I invited her to our home shortly after. She came with a New Parent packet from the Down Syndrome Association, which was loaded with important information. Like many things affected by fatigue during that time, our first meeting is now a blur. I only remember that it was nice to meet and talk to her. We got along well. I don't remember feeling depressed or crying while she was visiting so I must have been able to pull myself together and manage a conversation and a few smiles. She was a great source of encouragement and knowledge.

After making the connection personally, it was very reassuring to know I wasn't alone. The book "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" also helped cement that reassurance. Reading Gifts led me to find blogs of other moms and dads who have kids with Down syndrome. And that led me to start this blog.

But I wanted to do more. I wanted to be a source of support, encouragement, and information via the blog AND in person.

Answering what I perceive as a calling, I trained as a New Parent Support Volunteer with our local Down Syndrome Association this past Saturday. I've been wanting to do this since April last year but Elizabeth was a couple weeks away from being born and having a newborn would make it impossible for me to commit to the responsibilities.

I'm very happy to have this opportunity to pay forward the support that my new parent support person gave me during my most vulnerable time. Thank you so much!! (You know who you are.)

TalkTools Straw #2

2011-04-16T15:21:00.006-05:00

We used straw #2 of the TalkTools Straw Hierarchy kit from the beginning of March to mid-April this year. Straw #2 is a curvy purple straw. I've seen this straw at Target in the party supply section and at a local party supply shop. So if we lost this straw or it broke, then it would be easy enough to replace.

The lip block on the straw is very effective at keeping just 1/4-inch of straw for Matthew to practice a proper lip seal around the straw instead of wrapping his tongue around it and suckling. Two lip blocks came with the TalkTools straw kit but I think they can also be bought individually from TalkTools or possibly from other online stores that sell therapy supplies for oral-motor activities.

Between this straw made of a harder plastic than straw #1 and the lip block, (and better supervision from me) Matthew had no opportunity to chew on this straw like he did with straw #1.

Either the take 'n toss cup with a straw lid or the sip tip cup generally seems to work. There is little risk of a little spill through the hole in the lid if the cup is tipped at an extreme angle since the straw is loose-fitting through the lid. It's usually not an issue though since I hold the cup and straw for Matthew.

The drink of choice: Motts for Tots apple juice. He prefers not to drink water or milk with this straw.

Here's a short video of Matthew using straw #2.

Related posts:
TalkTools Straw Hierarchy Kit
TalkTools Straw #1

Matthewangelo

2011-04-13T21:04:00.000-05:00

At a seminar I attended, the speaker briefly talked about an activity to somewhat simulate how kids with Down syndrome have a hard time learning. The (typical) kids wore socks on their hands, had cotton in their ears, and a big marshmallow in their mouths. Then they were given instructions to follow. Not able to hear very well, it was hard to follow instructions. Not able to move their tongue very well, It was hard to talk. Not able to feel what they were touching very well, it was hard to manipulate objects such as scissors to cut paper or a pen to write.

It's not impossible. It just takes more effort.

So when Matthew comes home from school with some of his works of art, I save the exceptional ones that say:
"I did it!"
"I'm having fun"
"I'm learning!"
Matthewangelo's Gallery
Here is my little avant-garde's impression of lines.
(He has become more consistent at imitating horizontal and vertical lines. His occupational therapist drew the 4 lines on the left side of the paper.)

A circle.
(He did an awesome job drawing a circle yesterday, copying his teacher's example. He drew the big circle in the middle of the paper.)

Cutting along a thick line with minimal assistance using a spring-loaded preschool scissors.

Woolly sheep.

Finger painting.

Stickers on a dino.

Toy Review Tuesday: Alphabet Foam Floor Mat

2011-04-12T09:30:00.117-05:00

Foam floor mats come in many colors and varieties. We have the alphabet floor mat. The square pieces are interlocking and the letters pop-out for some puzzle fun.

We don't really use it as a "sit down and put together the puzzle" toy though. We enjoy it as just a floor mat.

Activities We've Liked

Create an infinite path. After I modeled walking/ hopping/ jumping/ naming letters as I randomly stepped on them, I got Matthew's attention. He thought it was pretty funny, giggling the whole time he was walking as fast as he could on the foam letters. Round and round the living room floor around the ottoman.

Create a simple obstacle course. I put a wooden board across one area for Matthew to step on and off it whenever he got to it. We have fun AND work on leg strength at the same time.

Connect all the pieces together to form a giant rectangular mat. Lay a quilt and/or blanket on it. Top with pillows. It makes a comfortable lounging/ play area. Matthew and Elizabeth had fun just rolling around on the makeshift bed.

Create a path of letters. Play an impromptu game of "Stomp on/ Touch/ Point at the letter ___."

A line/ path of foam letters also make a fun road for matchbox cars, a landing strip for an airplane, or even a substitute railroad for trains.

Do you have floor mat play ideas you'd like to share? We'd love to try them!

Cons
Matthew is way past the 'mouthing toys' stage. But there's something about these foam pieces that he likes so sometimes I'll catch him biting or chewing on a piece. Elizabeth is teething. I find her chewing on the pieces too sometimes. We have a "no chewing/ biting foam" rule here. The foam pieces are confiscated and rinsed.

Storage was an issue until I rearranged the toys and dedicated one toy box for all the pieces.

Clean up is tedious. Luckily, Matthew and Elizabeth don't take the pieces apart too often.

TalkTools Straw #1

2011-04-11T08:50:00.004-05:00

Straw #1
It's a blue straw with a duck that serves as a built-in lip block - to prevent too much of the straw to be in the mouth. Before starting, I trimmed the duck end of the straw to 3/4-inch, which was how much straw he usually had in his mouth when drinking from any straw.

He started with straw #1 after Christmas as part of his individualized NACD (National Association for Child Development) program. He was on it for 2 months. He would've been on it for much less time if I had been more consistent with it and if I didn't run into a problem.

The Dilemma

He bit the straw tip and flattened it. He did the same to the spare #1 straw in the kit. I tried to save the straws by re-rounding them. I was successful the first few times then the tips of the straws started cracking, making them unusable.

I cut off the duck and improvised with a makeshift lip block. But then I realized that cutting the length was probably not ideal. It made it easier for Matthew to drink with the shortened straw but it probably wasn't ideal for the objectives of straw therapy.

Moving On
After consulting with the speech therapist via our NACD coach, I got the green light to move on to the next straw. At that point, he was drinking with only 1/4-inch straw tip in his mouth, which meets one of the criteria for moving on to straw #2.

Straw #2 started at the beginning of March.

Related post:
TalkTools Straw Hierarchy Kit

A Wonderful Thing Happened On The Way To School

2011-04-07T15:44:00.001-05:00

Swimming. It's the one thing that Matthew thinks of everyday since we started swim lessons for him again recently. If we had a pool, he would be in it everyday.

Every time we get ready to go to school, he enthusiastically says his swim instructor's name. Unfortunately, I have to say, "You love swimming! We go swimming on Saturdays. Today we go to school." Not that Matthew understands the concept of time, but it's something for me to say and it's language for him to hear and try to decipher.

Swimming lessons are at the YMCA. To get there, we have to turn right on a street somewhere between school and home.

On the way to school today, we were stopped at the red light on said street today. Suddenly he said, "O de!! O de!" I looked back at him and he had his right arm outstretched with his index finger pointing so perfectly at the street that goes to the Y. He was so excited. So I quickly figured out that he was saying "over there!" Then with his trademark dimpled grin he said, "Sim!!" He wanted to go swimming!

This was the first time he has said "over there", directing me where to go and what he wanted. The words may not have been articulated clearly but his use of language to convey his message (and the fact that he knew which street to take to the Y) was loud and clear! It was perfect!

What wonderful things have your kids been doing? We would love to hear (read about) them!

TalkTools Straw Hierarchy Kit

2011-04-06T15:13:00.000-05:00

Tongue protrusion and low muscle tone (also known as hypotonia) are common among individuals with Down syndrome. Is it because of an enlarged tongue? Is it because of hypotonia (low muscle tone)? Contrary to the belief that it is because of an enlarged tongue, I have come across some literature that low muscle tone leads to tongue protrusion. I mentioned this in my previous post "On Tongue Protrusion". The article "Tongue Protrusion" by Karen Henderson SLP, explains it and provides suggestions to promote tongue retraction. (The article is available as a .pdf file online. Google Tongue Protrusion Karen Henderson).

Hypotonia affects all the muscles in the body. The tongue is a muscle. We have mouth muscles that allow us to move our mouths, chew, and keep our mouths closed to keep our tongue in. Without hypotonia, our mouths are naturally closed when we're not talking or eating. With hypotonia, it seems that natural tendency is for the jaw to remain open and tongue thrust to occur.

The TalkTools Straw Kit is one of the tools to inhibit tongue thrust. The idea is to improve mouth and tongue tone through a hierarchy of drinking straws that encourage utilization of various targeted mouth/ tongue muscles.

There are 8 straws. Each straw is different in length, diameter, and form and intended to address certain areas of the tongue. The straws also promote lip closure.

I had considered finding similar straws at dollar stores instead of buying this kit. But it would be too troublesome and time-consuming for me. I also wouldn't have the instructions that come along with the kit.

I recently learned that when drinking out of any straw, even one not in the TalkTools straw kit, only about 1/4-inch of the straw should be in the mouth for proper lip closure and straw drinking. With a lot more than that in the mouth, Matthew starts to suckle the straw instead therefore not encouraging the right muscles to improve tone and promote lip closure.

Matthew started with the straw kit right after Christmas. We are about to move on to straw #3.

Keep in mind that there are many other ways to improve muscle tone and awareness. Chewing (chewy food) is one way to make the mouth muscles work and get that tongue moving around. I listed other tips in "On Tongue Protrusion".

Do you use the TalkTools straw kit? What has your experience been with it?

Related post:
On Tongue Protrusion

Toy Review Tuesday: Wooden Number Puzzle

2011-04-05T06:21:00.054-05:00

There are many varieties of wooden number puzzles. We have the Melissa & Doug wooden number puzzle.

Matthew can rote count from 1 to 10, which is an early number concept - a pre-math skill. This wooden puzzle serves three primary purposes for him:
1. learn to rote count from 1 to 20
2. learn to recognize numerals 1 to 20
3. learn to put written numerals in the correct order.

I give Matthew the pieces, one at a time, in the correct order so he gets accustomed to the sequence. As he lays the pieces on the puzzle board, he sees that they go from left to right, which is good practice for reading since the English language is read from left to right.

Our next step is to teach him to arrange the numbers in the correct order without the board to match. However, this activity is only meant to teach sequence, not the concept of big or small numbers or quantities.

Note: Some 3-1/2 year olds may find this to be the most boring activity ever. Matthew thinks it's quite fun. It helps that he is currently highly interested in numbers and counting.

Monkeys Wrestling on the Bed

2011-04-04T03:21:00.000-05:00

After a few minutes of wrestling and rough-housing on our bed with Daddy, Matthew is suddenly more verbal than usual. I think it's an effect of the high dose of FUN. Elizabeth purposely falls back first on the bed, enjoying its plushness, and giggles hysterically. They have a blast hiding under the covers and getting tickled. Besides, it's just the best time ever on the weekends!

Three monkeys wrestling on the bed.
Thankfully, no one has fallen off or bumped their head.
Mama took these photos as she said,
"Oh, be careful wrestling on the bed!"

Ultimate Blog Party with 5 Minutes for Mom

2011-04-03T01:36:00.006-05:00

Joining a virtual party at 5 Minutes for Mom for the first time. I'm a little late but better late than never, I guess. This should be fun, I hope. It might be a good way to meet other bloggers and raise awareness about Down syndrome.

Let's see...

To all my awesome followers, Welcome Back! Thank you so much for taking the time to read and return for more.

To all new passers-by, Welcome! Thanks for dropping in. Please leave a comment so I know you were here and I can follow you back.

A little something about us

Bill and I met in Melbourne, Australia. I'm Filipino and he's American. We were both in the land down under pursuing Masters degrees. To learn more about how we met, please read It Had To Be You.

Matthew, meaning "Gift from God", was born in 2007 and was diagnosed with Down syndrome at birth. We did not know prenatally. His grandma wrote an essay about him titled "We're Keeping Him". His aunt wrote an essay about him and it was published in the book "Gifts 2: How People With Down Syndrome Enrich The World". He is my main inspiration and motivation for writing how I write and what I write about. By blogging about him, we are sharing our gift from God with you.

Elizabeth was born in 2010. Just like her big brother, she's animated and full of character. We jokingly call her Queen Elizabeth. Of course, she takes that role seriously, demanding and expecting only the best service from her loyal subjects. She wore a tiara at her first Halloween last year.

Other blog highlights include Toy Review Tuesdays, Book Reviews, and Down Syndrome Resources. I write about the kids' toys and how they've helped with their development. Most of the books are Down syndrome-related, many are highly inspiring.

I hope you will continue to follow our journey - one that I hope will inspire as well as entertain you. You can also follow me on Twitter.

Our Walkie Talkie

2011-04-02T10:59:00.016-05:00

Our "walkie talkie" can actually walk and talk. She can walk up to 6 feet unassisted and can say "up."

Our walkie talkie does not require batteries. She recharges with a good night's sleep, a couple naps during the day, infant formula, and lots of attention.

Roger that? 10-4.

Out.

Related post:
His DS

Bubble Therapy

2011-03-31T05:00:00.001-05:00

Bubbles have fascinated Matthew since he was about 9 months old. It wasn't until he was 2-1/2 years old when he could blow bubbles on his own.

It's an enjoyable lip rounding activity. He loves bubbles so much that it is a powerful motivator to get him through non-preferred gross motor activities.

Bubbles also helped him with articulating certain speech sounds. "P" in pop, "B" in bubbles, "M" in more. Teaching him a few 2-word phrases was fun too. He'd say "bye bubbles" as we watched them float up and away and "gig (big) bubble" whenever he blew a big one.

Now he shares his bubble interest with his sister. He never lets her touch the bottle of bubbles. But he's more than happy to let her pop them.

Related post:
Toy Review Tuesday: Bubbles

Everybody Loves Reece's Rainbow

2011-03-30T05:29:00.000-05:00

Reece's Rainbow is the connection for orphans with Down syndrome all around the world to find forever families.

An American family. Possibly the forever family of a 4-year old boy with Down syndrome from Russia. His name is Kirill. Everything was looking good until the Russian judge ruled against their application. The basis: Kirill was "not socially adaptable due to his medical condition." The judge would not approve the adoption only because Kirill has Down syndrome, saying that "he was better off in an institution than in a home with a family." It is absolutely heartbreaking. Read Kirill's story.

Kirill's story has spread like wildfire. Actress Patricia Heaton (in the tv series Everybody Loves Raymond) is responding to Kirill's story by supporting Reece's Rainbow. Read her Reece's Rainbow note on facebook.
She is donating $1 for every Reece's Rainbow follower on Twitter up to $10K.

Please show your support and help raise funds and awareness for orphans with Down syndrome. Simply follow @ReecesRainbow on Twitter.

Support for Down Syndrome to the NIH

2011-03-28T14:48:00.006-05:00

I received an email from the DSRTF (Down Syndrome Research and Treatment Foundation) today.

Dear Friends,

We are writing with an urgent request for your support for something that is of the utmost importance to us and anybody who cares about people with Down syndrome. We do this in concert with the many other Down syndrome organizations that have been at the forefront of efforts to mobilize the Down syndrome community to voice their support for this critical initiative.

The National Institutes of Health (NIH) has requested feedback on the creation of a centralized Down syndrome patient registry, database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. The Down Syndrome Research and Treatment Foundation and the researchers we fund support these critical elements of Down syndrome research, and we would like you to join the broader campaign to maximize the volume of responses delivered to the NIH. If you have not yet done so, we would like for you to draft an email of support (more details below) or sign our online petition prior to the deadline of Friday, April 1.

Thank you in advance for helping to assure Down syndrome research receives a fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Sincerely,
Chris Rose
Executive Director
Down Syndrome Research and Treatment Foundation

To help in this effort, you can do either of the following:
1. By April 1 (NIH deadline), e-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank using the draft email (below) to: dsrdrfi@mail.nih.gov. Please cc: dsrtf@dsrtf.org so we can keep track of the responses.
2. Sign our online petition, which is available here: http://www.ipetitions.com/petition/downsyndrome/

I support this cohesive effort to help increase federal funding for Down syndrome. So, I wrote this letter (customizing the example provided by the DSRTF):

To Whom It May Concern:

As a mom of a 3-year old boy with Down syndrome, who brings absolute joy and inspiration into my life and all the lives he has touched, I strongly support the development of a formal Down syndrome contact registry, research database and biobank/tissue repository.

I am pleased that there have been a number of substantive meetings between leading Down syndrome organizations and the NIH to assist with the preliminary planning of such registries. Those organizations speak in the best interest of individuals with Down syndrome and their families and have determined how important it is to to establish a Down syndrome contact registry, research database and biobank/tissue repository. I encourage you to consider their recommendations.

I appreciate the NIH’s renewed interest in Down syndrome research and urge you to fund this essential component for long-term improvement of the lives of people with Down syndrome. People with Down syndrome deserve it.

Sincerely,
Ria

Your turn.

Potty Trained in 4 Days

2011-03-27T12:57:00.025-05:00

Not Matthew. We took the scenic route.

But Bridget Murphy's son, now 19 years old and in college, was completely potty trained in 4 days when he was 5-1/2 years old. Bridget Murphy is currently the Board President of the Down Syndrome Guild of Greater Kansas City. She created a 4-day potty training plan. It requires consistency, a lot of toilet training-devoted time, patience, and firm resolve.

I attended Bridget Murphy's potty training seminar last week. Her 4-day method was night-and-day different from the ABA (Applied Behavioral Anaylysis) toilet training method that I had just read a few days before her seminar.

Except during the first day when toileting is being introduced, the 4-day method was all about making the child solely responsible for toileting, no reward system, and absolutely no prompting (visual or verbal) to use the toilet. Her method is based on the assumption that a child can and will learn to self-regulate when the child has to deal with the natural consequences of not using the toilet when needed.

The ABA-based method involved adult assistance and prompting but eventually fading the prompts over a period of time.

Where We Are
We are currently somewhere in between or maybe on a super extended version of Day 1 of Bridget Murphy's method. We prompt. We ask Matthew if he is wet or dry and ask him to check his pants. If he says he is dry, we say, "Good, your pants are dry." If he says he is wet, we say, "You're wet. Let's go potty."

Sometimes he complies. More often though, he is resistant especially if he is doing a preferred activity and does not want to be interrupted. He'll flop and drop to the floor saying, "Nooooo!"

We don't have a set reward system in place for when he uses the toilet. We go with whatever he is interested in at that time. It usually helps us to avoid the flop and drop if we say, "Go potty and then blow bubbles (or whatever preferred activity he wants at that time)." So we don't necessarily "reward" as much as we just tell him what he will be doing next after he uses the toilet. We praised him for using the toilet but we've been fading that. The only "reward", if we call it that, is he gets to flush the toilet. He's happy with that.

Not For Everybody
Bridget Murphy's 4-day method worked with her son and several people that had tried it. And I've heard that ABA was very effective for several people as well. Different strategies work for different people depending on the many variables involved such as family circumstances.

And as much as I'd like to cut our potty training period short, the 4-day method won't work for Matthew unfortunately. Not right now anyway.

Her method requires the child to be able to dress and undress without assistance. Matthew still needs help and some prompting to take his pants on and he has trouble putting his pants back on. There was one time yesterday when he put on his underwear by himself without prompting from us. But he hasn't done it yet again since. Maybe if we waited a few more months until his fine motor is stronger and he can dress and undress unassisted, we can launch into the 4-day method. But until then, we'll do what we've been doing.

I will, however, tweak our strategy and adapt a few good ideas from the seminar.

1. Instead of wearing a pull-up over his underwear for car rides, we will eliminate the pull-up and put a puppy pad on his carseat.
2. Give him more opportunities to practice dressing and undressing.
3. Lessen prompting during the toileting process.

If Bridget Murphy has a seminar near your area, I would recommend going. Or perhaps your local DS Association would invite her as a speaker.

Lightbulb Moments

2011-03-26T23:05:00.011-05:00

I love lightbulb moments. That "aha!" feeling for thinking of a solution to a problem or finally understanding something I've been trying to learn is simply very self-satisfying.

I love Matthew's lightbulb moments even more. They make me happy. And he has many, I've lost count. There are lightbulb moments in everything he is learning - from walking to saying words to blowing bubbles to learning colors to sight reading locking me out of the house to navigating the apps on my iPhone on his own.

I'll share a recent lightbulb moment.

A friend's 2-year old figured out how he could use a stool to help him get to things that were a little out of his reach. And I realized that I hadn't taught Matthew that yet but I bet he could do it.

So, playing with a balloon one day, the balloon landed on the kitchen counter just out of Matthew's reach. Taking him by the hand, I led him to the bathroom where we keep a little plastic step stool. Hand over hand, I showed him to pick it up and take it to where his balloon was. We put it on the floor, he got up on it and was able to get his balloon. We did it a few more times that day. He is a visual learner and a hands-on learner. And he learns better when we go through the motions rather than just talking about it.

This evening, Matthew demonstrated his understanding of that skill. I was in our bathroom with Elizabeth and Matthew.

Me: Elizabeth, let's wash your hands.

Matthew: Wash hands.

Me: Oh, you want to wash hands too? Ok. Oh, but you can't reach the water here. We need a stool.

Matthew left our bathroom. I washed Elizabeth's hands, not even thinking about where Matthew could've gone. As I was drying Elizabeth's hands, Matthew walked back into our bathroom with the plastic step stool from the other bathroom, set it on the floor by the sink and got up on it to wash his hands.

I didn't specifically tell him to get a stool. I didn't tell him where the stool was. He just processed what I said and thought, "Aha! I know where I can find a stool to use!"

Do you have a lightbulb moment to share? We'd love to hear it.

Toy Review Tuesday: Rody Inflatable Hopping Horse

2011-03-22T05:00:00.006-05:00

We welcomed Rody the Pony into our home when Matthew turned 3. I guess he's just a fancy version of the hopping ball. Bill says he looks like a weird rabbit, not a pony.

Rody offers a few advantages over the hopping ball. For Matthew, Rody is easier to mount and dismount compared to the hopping ball. Rody is easier to hop on. Given that he is a hopping toy, there is a real possibility of falling over to the side or forward as weight is shifted on the horse while bouncing.

We started out by spotting Matthew very closely as he had a tendency to fall sideways. But since he's a little stronger now and has better reflexes and control, he will ride Rody and purposefully fall off Rody in a very controlled manner and say "Whoa!". It's one of his favorite things to do.

He can independently ride Rody and move a couple feet forward with him but not down the full length of our hallway yet.

Elizabeth's interaction with Rody is limited to chewing on his ears and crawling over it when on its side. She gets to ride Rody too but only with me holding her. The toy is rated for ages 3 to 5 so it will be a while before Elizabeth goes bouncing around the house on Rody by herself.