Park Playdate

We recently went to a playgroup organized by First Steps, the early intervention program that we're in. It was at one of the parks in town and it was a beautiful day. Matthew enjoyed playing in the ball pool that they set up.


He also liked playing on the grass. He used to not like the feel of grass. So is this an indicator that he's not sensory defensive?
Printed on his shirt: "I may be small but I'm still The Man"


He enjoyed hanging out and watching the other kids that were running around. He's an only child so going to these playgroups is good for developing social skills in interacting with other kids close to his age. I think my little observer is taking notes from other kids. When I was taking this photo (below), I didn't realize at the time that he was the only boy in the pool.

Treadmill Training For Babies With Down Syndrome

Now that Matthew is a master crawler and showing more interest in walking, we are working on learning to walk. A few of the activities we've been doing to help him achieve his next goal include:

• cruising along furniture
• walking with two-hand support - We started out with me behind him and his hands up higher than his shoulders. Then we eventually switched to being in front of him, guiding him to take steps towards us while holding on to our fingers with his arms at shoulder level or lower. This second position is actually better as we notice that he has to rely on his stomach muscles more and learn to balance as he takes steps.
• walking with his push walker (and lately, the laundry basket.) Watch the video of him pushing his walker at my blog post Have Walker, Will Travel.
• walking with one-hand support

The book Gross Motor Skills in Children with Down Syndrome by Patricia C. Winders clearly explains these activities in more detail.

Last week, we started treadmill training. My dad had first found an article about it on yahoo news in 2007, about a month after Matthew was born. I had forgotten about it until about 2 weeks ago when I came across "Treadmill Training Helps Down Syndrome Babies Walk Months Earlier" on bio-medicine.org. Then yesterday, Ruby's Mom at Ruby's Life blogged about a new tiny treadmill made just for babies.

ScienceDaily () -- Kinesiologsts developed a tiny treadmill to help infants with Downs Syndrome learn to balance themselves earlier. Typically, these children learn how to walk at 24 to 28 months, later than the 12 months for those without Downs. The treadmill exercise, used about 8 minutes a day, helps to reinforce the underlying pattern of coordination in the legs. This repetition helps build core muscles and support the drive to stand up. After the babies take eight to 10 steps without help, they are outfitted with light reflecting markers. The information from these markers is recorded on cameras, revealing gait, speed and width of their steps. Researchers show walking is occuring six months sooner with the treadmill.

To read the rest of the article, go to Baby Treadmill Kinesiologists Design Tiny Treadmill To Help Balance Baby Steps In Downs Syndrome Infants

Babies Can Start Treadmill Training As Early As 8 to 10 Months Of Age
Had I remembered the yahoo news article on treadmill training when Matthew was 8 months old, I don't think I would've started it that early with him. Matthew is not as motor-driven as other toddlers his age. He's more of an observer and a thinker. So I usually find that it helps him a lot if I let him watch me show him how something works several times before he tries it himself. My guess is that he would not have tolerated treadmill training when he was 8 months old. Every kid is different though. Other parents may be successful at starting treadmill training with their babies early.

Matthew's physical therapist (PT) supports treadmill training as a supplement to our therapy sessions and suggested that we have him walk on the treadmill with shoes sometimes and without shoes other times. She says this will help improve his leg and foot strength and balance. It takes a little bit more effort when walking with shoes than without. Also, the treadmill offers a different walking experience.

We don't have the mini treadmill that the ScienceDaily article mentions. The Bio-Medicine article states that these treadmills cost about $1,200 each. There should be some hospitals and Down Syndrome Organizations that might rent it out but we didn't explore that option. We have a regular treadmill that we set to the slowest pace and I hold him under his arms in front of me as he walks. The articles on treadmill training recommend 8 minutes of walking but Matthew is only able walk for a minute at a time. It works for me as I can only squat for a minute at a time. So while he's building his core muscles, I'm getting some much needed strength training too. Win-win! The plan is to slowly get him up to 8 minutes, following his lead on how much he wants to walk on the treadmill.

Is Walking Earlier Really Better?
The ScienceDaily article states that babies with Down syndrome learn to walk between 24 to 28 months without treadmill training. The milestone chart inAn Overview of the Development of Infants with Down Syndrome (0-5 years) on the Down Syndrome Online website shows the average age range for children with Down syndrome to walk alone or independently is 13 to 48 months. I know a little girl with DS, who is walking at 18 months, and a boy with DS who walked at 27 months. Both kids are doing great.

So will walking earlier advance a child's cognitive development, social skills development and language? Probably, simply because it gives the child mobility, the ability to explore his environment. What about crawling? Crawling is mobility too and seems to offer its own set of benefits that walking doesn't such as building trunk, arm, head, and neck strength, eye-hand coordination, coordination of both sides of the body, and stability. Don't we all catch up with each other later on? Kim Ayres at Ramblings of the Bearded One candidly commented on one of my previous posts, "if you look at any group of people, can you guess who were the early or late walkers? Once we get there, it makes no difference." So true. Everyone learns at their own pace, Down syndrome or not.

So why exactly are we doing treadmill training with Matthew? Simply because we can. I view it as just another tool, a very interesting one. Whether or not treadmill training does indeed make him walk sooner than later or improve the quality of his walk remains to be seen. I like to offer Matthew different opportunities to develop certain skills whenever possible. If he didn't like it, we wouldn't be doing it at all.

Related Post:
Walking

Book Review: Peek-A-Who?

Peek-A-Who? by Nina Laden is Matthew's favorite board book. We read this book everyday, several times a day. It was with this book that he learned to turn pages. It's a quick read, which makes it perfect for speed readers like Matthew. When I say speed reader, I really mean 'speedy page turner'. It's a wonderful and simple rhyming book. The colorful illustrations are wonderful for a visual learner like Matthew. On the left pages, the words "Peek a" are repeated. The opposite page has a die-cut hole, allowing a sneak preview of what follows once the page is turned. Matthew almost always kisses the mirror on the last page - Peek a YOU!

Lately, he's been saying "buh" whenever he flips through this book. I'm not sure if he's trying to say "book" or trying to say the words in the book that rhyme with "who".

The Verdict: It's a wonderful beginner book!

These Shoes Are Made For Walkin'

The first pair of shoes Matthew ever owned were a size 4 brown pair sneakers from Target after his first birthday. I spent around $15, not wanting to spend much more on a pair of shoes that he would wear for conceivably just a few months, especially since he wasn't walking yet. I quickly learned it was a mistake. He only wore the shoes a couple of times. The shoes were too narrow.

In January, I took him to get his foot measured at the local Brown's Shoe Center. $32 and priceless comfort later, he's in a pair of navy blue New Balance toddler shoes, size 5, extra wide. I should've known better. Wide AND thick feet run in the family, i.e. Bill.

Flat Foot & Weak Ankle
Any child can have a flat foot but it is more common for kids with Down syndrome due to loose ligaments at the ankle (ligament laxity) and low muscle tone (hypotonia). Ligament laxity causes joint instability. I can imagine that gravity compounds this problem by allowing the ankle to roll inward once a child starts walking. My understanding of flatfeet is that it is only a problem if the condition is severe, where one is walking on the inside of the heel, and it causes foot or leg pain. The feet may be turned outward when walking instead of straight ahead.

At Matthew's physical therapy (PT) session this week, I learned that he is flat-footed. Isn't it too young to say for sure though? I thought the arch of the foot doesn't generally appear until the age of 2 or 3 (or 4?). Apparently, his therapist could already tell. I don't have her experience and trained eye so I trust her observations. 70%-80% of the kids who have Down syndrome that she has worked with required ankle braces (in severe cases) or physician-prescribed plastic foot supports called orthotics. Matthew's ankles weren't rolling inward excessively enough to need orthotics.

There are several ways to test whether an arch is being developed. One that I know of is by creating a footprint of your child’s damp foot on colored paper. Another is to walk (barefoot of course) on sand. Then check whether the foot arch leaves a noticeable gap. We'll do this when Matthew is walking independently. He still walks with two-hand support these days and sometimes with one-hand support very gingerly.

Ways To Strengthen The Ankles & Develop The Arch
Matthew's PT suggested a few exercises/ activities to help develop tendons, muscles, and ligaments. Of course, I don't think these exercises are a guarantee that an arch will develop, but if it will improve muscle tone in the legs and feet, I'm all for it.

• Walk barefoot on soft uneven surfaces - Sand on the beach is a good example but since we don't live anywhere near a beach, we can create soft uneven surfaces indoors using blankets and pillows or a bed mattress on the floor. Walking barefoot on the grass is also an option for us.
• Walk with shoes on both level and uneven hard terrains, such as the driveway, gravel road, or rocks.
• Pushing a weighted toy/ object - This requires him to push off more with his feet to move forward. A laundry basket half filled with clothes is perfect! Matthew enjoys pushing our laundry basket and fusses when I say it's time to stop.
• Activities where he needs to tiptoe and maintain the position for a few seconds at a time. He's getting tall enough to hold on to the top of our sturdy dining table. Perhaps a good motivator is having a toy on the edge of the table, just slightly out of reach so he has to tiptoe to get it.

Special Shoes?
Custom shoes, arch supports, or braces prevent flat feet from worsening and alleviate pain (only in cases of severe flatfeet) but they don't help develop an arch or correct a problem. Whether Matthew may need orthotics or not remains to be seen. He'll probably need arch supports and hopefully, the off-the-shelf kinds will work just fine. Orthotics aren't as affordable but we won't hesitate to get them if that's what Matthew will need in the future.

Shoes with a flexible sole are recommended for kids learning to walk. And in Matthew's case, we're going to need extra wide shoes as well. I know of two brands that have extra wide sizes: New Balance and Stride Rite. Recently, I stumbled upon Piedro Boots and Ricosta(German brand) in Foot Problems in Children with Down Syndrome at the Down Syndrome Centre website. There are probably other good shoes out there that are available in extra wide with flexible soles but I haven't come across them yet. Has anyone had any luck with other brands and/or styles?

In the meantime, his New Balance shoes are just fine. Target, my favorite store, hasn't failed me completely. I recently found a pair of Circo brand sandals ($13) with adjustable velcro straps near the toes and the ankle. This helps compensate for his wide, thick feet. I also found a pair of slippers ($7), which are great for when he's playing at his water table.

Toy Review Tuesday: Fisher Price Little Superstar Sing-Along Stage

About 'Toy Review Tuesday': Every Tuesday, I write about our experience with a toy, while trying to incorporate thoughts on how it may help a child with Down syndrome. This review is not to be construed as an endorsement of the product nor do I intend to put pressure on parents to purchase the toys reviewed. Questions, sharing your own experience, or any other helpful insights are welcome in the comment section.

Music, lights, and mirrors are a few of Matthew's loves. Needless to say, the Little Superstar Sing-Along Stage by Fisher Price was a home-run Christmas gift last year from Matthew's Grandpa and Grandma. He was 14 months old. As soon as we took it out of the box, he commando crawled right up to it, pushed on the drum (it's the big round orange button in the front). It has 2 music settings: a sing-along mode that plays 5 songs and a build-a-song mode that plays a pretty jazzy tune. Another nice feature is volume control. With the way the base is designed, it's not tippy at all. Matthew has safely pulled up on it a few times.

Cause and Effect
As with most toys that light up and/or play music at the push of a button, the Sing-Along Stage reinforces the meaning of cause and effect. Each button makes a different instrument sound. To activate the guitar, Matthew runs his hand over the roller center of the guitar. To activate the xylophone and the drum, he simply pushes on the corresponding buttons. To activate the trumpet (and this was the last one Matthew learned to do), he pulls a lever downwards. Shaking the microphone also activates the music.

Your Turn, My Turn
We also used this toy to practice turn-taking. As you may know, turn-taking is one of the pre-literacy skills babies/toddlers need to learn. If you think about it, we take turns when communicating. One speaks while the other listens. I'd hold and shake the microphone to activate the music then give it to Matthew and say "Matthew's turn". He'll shake the microphone and then I'll ask him to give me the microphone and say, "Mommy's turn." We go back and forth like this a few times.

Mirror Play
In Early Communication Skills for Children with Down Syndrome, Libby Kumin writes, "Research has found that mirror play increases a child's sound-making." Mirror play gives Matthew visual feedback of how he moves his hands and his mouth as he babbles and makes sounds.

Listening Skills and Receptive Language
I can tell Matthew listens to the lyrics of the songs. Before he got this toy, I usually sang "If you're happy and you know it, clap your hands" to him when teaching him how to clap his hands. The very first time he heard the song play on this toy, he clapped his hands without any prompting from me. No kidding! I was so proud of him. I didn't know the other songs very well but thanks to the included lyric cards I'm able to sing along and teach Matthew different actions to certain songs, such as "Head, Shoulders, Knees and Toes".

Along with teaching him to wave "hi" and "bye", I have also been teaching him to blow kisses. One day, I was watching him at his mirror play. He blew himself a kiss in the mirror when he heard the line "blow you a kiss" in the Peek-a-boo song. Again, no prompting from me. This shows me how much he understands as his receptive language continues to develop.

Each button activates the music with the specific instrument sound corresponding to the button. As Matthew grows with this toy, this will be one of the ways to introduce the sounds different instruments make and practice listening skills. Of course, we're limited to 4 instruments here but don't worry, it's not the only musical toy that my little musician owns.

The Verdict
Given that Matthew has played with this toy several minutes a day, every single day since we got it, I'd say this is a winner.

As of today, approximate retail price is $49.99. For more product details, please visit amazon.com.

Another Baby After Having a Child with Down Syndrome?

Like other parents who have a biological (as opposed to adopted) child with Down syndrome, Bill and I met with a genetic counselor during our week-long stay at the hospital after Matthew was born. Bill says he vividly remembers how our meeting went. I can only remember parts.

I remember the depression, the overwhelming emotional pain.

I remember seeing the results of the chromosome analysis that was done using a blood sample from Matthew. There it was - an extra copy of the 21st chromosome.

I remember asking how this happened and being "reassured" it was nothing we did to cause it and nothing we could've done to prevent it. Matthew has Trisomy 21, the most common form of chromosomal abnormality that affects approximately 1 in every 800 newborns and is typically not inherited.

I remember saying that I was only 29 and didn't think our chances of having a baby with DS was high. Matthew was our first child. We learned that we had a 1/1100 risk. I was upset that I was THE 1 out of 1100. The risk is less (1/1400) for someone between 20-24 years old and it steadily increases with age. The frequency of Down syndrome per maternal age is charted on ds-health.com. I scoffed at other similar statistics that were brought up in later conversations.

I remember asking what the chances were of a recurrence. It increased to 1% (1/100) since we've had a baby with DS. Plus, this risk increases with every year that goes by.

I remember talking about the possibilities of genetic testing for Bill and I before we have any more kids. At the time though, I really didn't feel like having any more kids because the risk of having another child with DS was so high. We talked about exploring in vitro fertilization as an option for future kids. Expensive, but if we had to, we'd find a way.

I remember thinking 'Why me?'

It took me many months to even fathom the idea of having a second child that would not be through in vitro. Many people asked when we would have another baby, not knowing that it hurt to answer "not any time soon". It felt like being pushed off a cliff and asked if I wanted to be pushed off again. I feared the possibility of having another baby with Down syndrome. I just couldn't bear to think of the developmental delays, the arm-long list of potential and likely health problems, the likelihood that he may not be able to live independently, the social stigma, and all the possible hardships that Matthew may have in his life. It broke my heart. Were there other mothers that had this same fear? Probably.

In the past few months, however, I've managed to dispel my doubts and fears. Through Matthew, I've discovered amazing unconditional love that I cannot truly express in words. Through books like Common Threads: Celebrating Life with Down Syndrome by Cynthia S. Kidder and Brian G Skotko, I found reassurances for the future. I read about individuals with Down syndrome like Karen Gaffney, who is a self-advocate, accomplished swimmer and President of the Karen Gaffney Foundation, and Chris Burke, who acted in the tv series Life Goes On from 1989 to 1993. Life is better these days for individuals with Down syndrome and I imagine it will only get better in the future. Through the internet, I found other moms who answered the nagging question I had in my mind: "Anyone here given birth to another child after having your baby with DS?" on healthboards.com.

I no longer fear possibly bearing another child with Down syndrome, not to be confused with choosing to have a child with Down syndrome. If God let me choose whether I want to have another child with Down syndrome or a 'typically developing child', I would choose the latter. Can you blame me for wanting to know first-hand what the grass is like on the other side? But the choice is not mine to make. I admire those who choose to adopt a child with DS. I feel it's just not a path for me. Would I take a prenatal screening test? Maybe, depending on how the pregnancy goes and if my doctor recommends it. But I won't be heart-broken if I find out that our second child may have Down syndrome. I'll simply be more prepared.

So, ask me again if we would have another baby. My answer, "Maybe (hopefully) some time soon. We'll see." Are there other mothers who have other (biological) kids without Down syndrome after the one with? Definitely. And I would love to meet them.

Side note: No, I am not pregnant. If I were, I'll have Matthew wear a shirt that says 'I'm the big brother' on it.

A New Pediatric ENT

Since Matthew's birth, we have seen several doctors other than the pediatrician - pediatric cardiologist, pediatric opthamologist, and pediatric otolaryngologist (ear, nose, throat or ENT specialist). There are many good pediatric doctors, but I personally like to specifically seek out the ones that are highly regarded by other parents who have kids with Down syndrome (and covered by our insurance). For me, that is an indicator that these doctors understand the nuances of medical care for kids with Down syndrome.

Questions for the Pediatric ENT
At Matthew's first appointment with the Pediatric ENT, we had many questions, as most new parents of a child with Down syndrome would have. Matthew was 6 months old.

Does he have fluid in his middle ears?
Fluid in the middle ear interferes with the vibration of the eardrum and reduces hearing sensitivity. The eustachian tube, which is located between the middle ear and the back of the throat, controls air pressure in the ear and drains fluid from the middle ear. When the eustachian tube is not functioning properly or is blocked, there is an increased risk of ear infections and fluid can be retained in the middle ear. Basically, any sounds that Matthew hears would be distorted, likened to hearing underwater. What a huge setback this would be for speech and language development if he was unable to hear properly!

A tympanometry was performed to test his hearing. This is an objective type of hearing test where a plastic probe containing both a transmitter and a microphone was inserted into Matthew's ears, one side at a time. It was non-invasive, not uncomfortable and it was over in a few seconds. The probe creates a vacuum seal and thus changes the air pressure in the ear. The transmitter in the probe sends sounds down into the inner ear and the microphone measure and records the vibrations the hair cells make in response. The test revealed that he may have some fluid accumulated in his middle ear. A repeat test 3 weeks later revealed the same results.

Do kids with Down syndrome tend to have an overproduction of ear wax?
At 6 months, Matthew's left ear was completely blocked with earwax. Removing the earwax was an ordeal in itself. Restraining him in the exam chair and listening to him scream while the doctor scooped the ear wax out was just so heartbreaking. I couldn't believe how much ear wax they dug out of his little ears. Thankfully, we haven't had to get his ears cleaned since then.

Will he need ear tubes and when should that be done?
We had two options: 1) wait and see if the fluid would eventually drain from the middle ear or 2) Bilateral Myringotomy Tubes in a couple of months. After doing our research, we decided we were comfortable with the more aggressive preventive treatment. So Matthew underwent surgery when he was 8 months old. It was a 10-15 minute outpatient procedure where he needed to be anesthesized. Not a big deal compared to many other surgical procedures but it made us anxious nonetheless.

Does he need to wear ear plugs at swim class?
It's a matter of choice. Ear plugs will keep water out of the ears. On the flip side, it may push ear wax inwards and possibly cause ear wax impaction. Our conclusion: If he wasn't immersing his head underwater or doing anything in the swim class that would let a lot of water in his ear, then he should be fine without ear plugs.

No Thanks to Dumb Parent Treatment
For the 4 visits, the doctor proved to be a competent enough pediatric ENT although there were a few instances where my mommy instincts picked up a hint of the "dumb parent treatment". I shrugged it off. I shouldn't have. I should've acted on it immediately and said something back but at the time, I didn't know what to say. I needed more practice in speaking up. I needed to process thoughts faster. I needed to learn to advocate for my son better.

The most recent visit in February left me with many more questions than answers. These are questions I had asked this doctor but it seemed like they were quietly brushed aside. Plus, it didn't help to get a little lecture on the importance of restraining my baby during the ear exam. How do you single-handedly do that sitting in the chair with Matthew, who is extremely squirmy and strong?!? I didn't like how he assumed that I didn't know why I needed to hold on to him very tightly!! So Matthew's ear tubes are still in place. When is he going to check Matthew's tonsils? This is the fourth visit and he has not once checked Matthew's tonsils, which are a little large according to our very thorough pediatrician. What about his adenoid? What are the odds of Matthew needing tonsillectomy (surgical removal of tonsils) and/or adenoidectomy (surgical removal of adenoid)? Does he have sleep apnea? Why does he get so congested while he's asleep some nights when he has no cold and is not sick? Has he developed allergies? Are there other ENT's that might be more thorough and actually look at the throat too, not just the ears?

After asking a few friends and Matthew's pediatrician for recommendations, I scheduled an appointment with another highly recommended pediatric ENT in St. Louis. I'm told that this other doctor is thorough and has a better bedside manner. Hopefully, I'll get my other questions answered without the dumb parent treatment.

Gone (Magnet) Fishing

Here's a fun activity we learned from the Parents as Teachers (PAT) playgroup that we went to recently. PAT actually lists this activity for toddlers 24 months old and up but Matthew enjoyed it so much at the playgroup that I just had to do it at home.

Materials:
dowel sticks (we used ones that 7/16" in diameter)
yarn or string
magnets
foam sheets
paper clips
crafting beads (or anything you can secure a magnet AND a string to)

Directions:

1. Secure a magnet to one side of a crafting bead. I chose crafting beads because of the flat sides and through-hole. This makes it easy to thread my yarn (fishing line) through.
2. While the glue is drying, draw fish patterns (or any other kind of sealife you fancy) on the foam paper and cut them out. Make sure they're not too big so the magnet can still lift them.
3. Attach a paper clip to each foam creature cut-out/ pattern.
4. Secure a 12-inch or shorter yarn or string to one end of the dowel stick.
5. When the crafting bead is firmly attached to the magnet the glue is dry, secure the other end of the yarn or string to the bead.
6. Scatter creature cut-outs in a ball pool, tub or big container and start fishing!

Benefits and Safety Considerations
I did all the work myself this time. But when Matthew is older, this will be great for working on fine motor skills - cutting the fish patterns, maybe coloring the patterns, and maybe even gluing the magnets to the beads. Obviously there are many small parts so this game will be played with adult supervision only.

Matthew caught a 14-lb catfish!


As it turns out, Matthew is more interested in the stick. Yuri had more fun with the yarn and foam fish.

If anyone has other fun activities they've tried and would like to share, please post a comment! I'd love more ideas.

The Crawler and the Cat

The interaction between Matthew and our long-haired 4-year old Siberian cat, Yuri, is a good source of entertainment in our home. Yuri doesn't know it but he was a huge motivator for Matthew's mobility, i.e. crawling. Matthew has had his eyes on the cat from Matthew's commando (belly) crawling days at around 13 months to his perfected 4-point (hands and knees) crawl at 16 months. What can be more enticing to a toddler than a furry moving target? Now 19 months old, Matthew is an excellent crawler, much to our cat's consternation. Most "typically developing" kids are already walking or running at this age. Lucky for Yuri, Matthew isn't there yet so he has plenty of time to escape little grabby hands. Yuri is cautious enough to keep his distance. Sometimes, Yuri is brave enough to rub up against Matthew. Other times, Yuri steers clear when he sees Matthew charging toward him. Yuri knows when he's about to lose another handful of fur.

Despite the fur-grabbing, they get along. Yuri is very tolerant of Matthew. They also have a few things in common.

They both like to snuggle with Bill.


They both know the true meaning of "lounge".


They both love to play.


They're both curious about their environment. Bill and I are thrilled to see our crawler explore on his own. Mobility is so important for kids to interact with the environment. When he wasn't mobile yet, we had toys within his reach and carried him around the house to show him pictures on the wall, lights, fans, etc. But with limited mobility, interaction with the environment is restricted, so Matthew was effectively getting reduced learning opportunities in relation to his crawling/walking peers. What better way for a toddler to learn independence, problem solving, and the "I did it!" feeling than crawling to a toy all the way across the room, around the chair and over the floor pillow on his own?

Getting Matthew mobile was top priority. All his therapists and other moms of older kids with Down syndrome strongly advocated crawling on hands and knees, citing reasons for 4-point crawling such as building trunk, arm, head, and neck strength, motor control and coordination, brain and vision development, eye-hand coordination, coordination of both sides of the body, and stability. These are also building blocks to developing fine motor skills such as writing. Well, that does makes sense, doesn't it? Crawling would help develop wrist stability and strength, which are important when writing. On the other hand, there are articles like Learning to Crawl on Parents.com that state "there's no proof that kids who skip crawling have impaired muscle strength or other developmental problems down the road." Being first-time parents, we relied on his therapists' advice and experiences. It was very important to us that he became mobile so he would have the social and learning opportunities sooner rather than later.

Yuri watched anxiously as we had Matthew doing exercises that would help him crawl on hands and knees including climbing steps, spending a few minutes a day in the 4-point position, and generally making him move forward inches at a time. We even used a yoga mat to provide more traction. By the time he was 16 months old, he was crawling fast and enjoying his new skill. Life was never the same for both Matthew and Yuri since then. The best thing about his mobility is seeing how pleased Matthew is with himself whenever he's able to crawl after a ball that rolls away or crawl up to the cat to grab his fur.

My Favorite Things (Matthew's version)

(Sing to the tune of My Favorite Things in the movie 'The Sound of Music'.)


Colorful board books and musical choo-choos
Long tails on kittens and fancy wide blue shoes
Cheerios, yogurt, paper and strings
These are a few of my favorite things

Spiky balls, beach balls, some bigger than me
Rides in red wagons and bark on the tree
Big sloppy kisses and telephone rings
These are a few of my favorite things

Towers to knock down and bath water splashes
Bubbles that pop on my nose and eyelashes
Tickles, grins, mirrors and fun window clings
These are a few of my favorite things

When the dog bites
When the bee stings
When I'm feeling sad
I simply remember my favorite things
And then I don't feel so bad

This is the Way We Brush Our Teeth

Who likes to go to the dentist? I know I don't, yet I should especially since my teeth aren't the greatest unlike my husband who never had cavities. I eat a lot of chocolate though and I could've done better taking care of my teeth when I was growing up. Then again, my husband drinks a lot of soda and has seen the dentist fewer times than I have within the past 5 years. Sigh, so unfair. I hope that Matthew takes after his dad in the dental department. However, everything I've read so far about dental health of children with Down syndrome indicate that kids with Down syndrome are predispositioned to develop problems with their teeth and gums (so what's NOT on that depressing long list of health issues associated with Down syndrome??)

Good basic dental care is important to maintain a healthy mouth, Down syndrome or not. I brush his teeth twice a day with a non-fluoride kid toothpaste but I often wonder whether I'm brushing his teeth well enough. He likes to bite and suck on his toothbrush. I can never seem to get to all his teeth. Maybe I'm an anomaly, but my guess is many parents have a hard time with thoroughly brushing their children's teeth too, especially when they're less than 2 years old. Matthew is also on a fluoride supplement since the water in our town doesn't have fluoride in it. I imagine that should help cut down on cavities. But then again, according to the experts, periodontal disease is a greater concern than cavities in individuals with Down syndrome.

So when should we take Matthew to the dentist? Two articles I've read, "Dentistry in Children with Down Syndrome" by Dr. Elizabeth Mueller, DDS and "Caring for the Teeth and Gums of Children with Down Syndrome" by Dr. Jonathan Sierk, DDS, recommend the first dental visit between 12 to 18 months of age or within six months of the eruption of the child's first tooth. Matthew's first tooth, lower left central incisor (lower front tooth), came in when he was 7 months old. At 19 months, he has the upper cuspids half way out and has yet to get all his second molars. So it seems we are overdue for a visit, aren't we? Matthew's pediatrician recommends starting dental visits at age 2. I also called a pediatric dentist today said they said their rule of thumb is generally age 3, but they see kids younger than that too when necessary. I guess it's really up to us when to take him. The articles I read make the process sound so easy. Even if the first visit is just a consultation, no cleaning(?) or x-rays(?), how do these pediatric dentists expect kids so young to open up and cooperate despite sitting on mom or dad's lap in the dental chair?

At this point, I'm hoping other parents would chime in about their kids' dental visit experiences and suggestions for making it a fairly painless ordeal. Also, how different is dental treatment and care for children with Down syndrome? More regular x-rays? More frequent visits required - maybe every 3 or 4 months, not the usual 6 month interval? I'm sure a pediatric dentist can answer all my questions, but I'm interested in personal experiences. It doesn't hurt to ask, does it?

Have Walker, Will Travel

Matthew has been all about the walker the past two weeks. He still cannot walk independently so the walker is great for helping him get around the house in addition to crawling on his hands and knees. I look at him pushing the walker around the kitchen floor, almost running down our cat (get out of the way Yuri!), and I feel so proud of him. It may be no big deal for some, but it's an outstanding achievement in my book.

I remember it was in December (he was 14 months old) when we began practising walking with him. It was very trying at times especially when he locked his knees and not move his legs to take steps. It was the same story when I held his hands or supported him under his arms to take steps. I had to move them forward for him while he held on to me or the walker in an effort to show him. I think he had a hard time with it because he had not developed the left-right-left pattern yet, even for crawling. His commando crawl was one-sided, using his right arm to drag himself forward and the left leg to push off. Also, he needed more strength and stability in his leg and hip muscles. He began to take baby steps in January, when he was almost 16 months old. Realizing he could go forward, he took more steps at a time each day we practised. We went from moving 2 feet to 12 feet without falling. He was fast too! We steered for him and caught him if he lost his balance. He learned to steer in the past two weeks.

"It just happened one day," some moms can easily recount. Some moms, on the other hand, need to give their kids more guidance. In our case, the lesson for learning to walk (i.e. push a walker) has to be broken down into steps (no pun intended). His physical therapist (PT) says that cruising sideways along our coffee table helped him develop the strength and stability in his hips which are needed to move forward. Stepping sideways also taught Matthew to shift his weight from one leg to the other and maintain his balance, which is key when stepping forward. Cruising from one piece of furniture to another, placed side by side, helped him develop balance. Cruising from the couch to the coffee table required more balance since he had to twist his trunk and let go with one hand in order to reach out for the coffee table.

Other than cruising, Matthew had to master other skills before he could move forward more reliably. Pulling up against the sliding glass door or fridge or any similar surface helped reduce the amount of arm support needed to get up to a standing position. Practising standing unsupported, even for just a few seconds at a time, allowed Matthew to gain confidence on his own two feet. Walking with two hand support is another important skill. He is very motivated to kick the ball around while Bill or I hold his hands. His PT mentioned that a product available at Target called Walking Wings Learning to Walk Assistant. It's a harness-type contraption and may be a good way to teach Matthew to walk without holding on to our hands. There are other similar products out there but his PT just happened to mention this particular one. We have not bought it for Matthew though, and I don't know if we will.

Until now, I had been clueless about these body mechanics. Granted, he is my first child so I have no prior experience and knowledge on teaching a baby to walk. His PT and the book "Gross Motor Skills in Children with Down Syndrome" by Patricia C. Winders have been a great help. I've also learned to read cues from Matthew in order to tell if he was willing and ready to learn more. It's been an educational and incredible journey so far. Bill and I are happy to be travelling with Matthew. And when he gets to walk independently, we'll be there to cheer him on!

No Tears Solution

Matthew and I were running late for his Music and Movement class yesterday. On the way there, I was debating in my mind whether we should go or turn back while William Tell Overture (Lone Ranger theme song) played in the background on Matthew's i-pod.

We arrived 10 minutes late. There were only two other kids in the class this time. As soon as I entered the room, Matthew was instantly superglued to me and he stuck out his lower lip (a warning sign that he was not liking his current situation). The idea that toddlers forget is now a myth in my mind. Matthew obviously remembered the unhappiness he felt in this room from the previous weeks. So I went around the little obstacle course with him in my arms, reassuring him that I wasn't going to leave him this time. Then we sat in a corner and played with foam blocks. That got him smiling and clapping his hands. The rest of the class went well. No tears! Yay!

So, until he gets used to being away from me, I'll have to be in the class with him so he gets a better experience out of it.

To have an idea of how we did in the previous classes, see related posts:

• Music and Movement and Mad Tears


• Music and Movement and Mad Tears II


• Music and Movement and Mad Tears III

The Water Baby

The first time I took Matthew in the pool, I immediately knew he had the water gene, just as Bill and I do. It was at a swim class called 'Creative Movement Swim' at the YMCA. Matthew was 6 months old. The other kids screaming or laughing in and around the (indoor) pool did not bother him at all. The sensation of the water around his body didn't bother him either, but I wasn't surprised by that because he loved bath time. He was quite at home in the pool.

We took a break from the class in the winter and the beginning of spring but now we're back in it. Before you get visions of Matthew swimming laps with the butterfly stroke or learning to swim underwater, let me tell you it's not THAT kind of swim class. The class focuses on fun activities for babies and kids (6 weeks to 6 years old) who have developmental disabilities. Not only is it aqua therapy or hydrotherapy, but it's a fun playgroup in the pool.

The Activities
With the goal of building coordination, balance, flexibility, strength, muscle control, spatial awareness and focus, we sing songs, play ball, and simply move around in the water. Sometimes the class instructor has everyone in the class move in a circle, with parents helping their kids use their arms to doggy-paddle. Matthew is learning to scissor kick while holding on to the kick board. Noodle floats also provide lots of entertainment when the kids ride them as if they were seahorses. Then of course, there's water basketball where we take turns dunking the ball. These are just a few of the activities that we do in this 45-minute class.

It's one of the best things we've done for Matthew's development.
When he was 6 months old, he could hold his head up but was far from being mobile. Being in the water allowed him to move his arms and legs with less effort. He was so excited that he kicked and kicked, like little frog on caffeine. He would belly swim on land too but he couldn't get himself to move forward. But in the water, his kicking was rewarded with moving forward as I held him under his arms and trolled him through the water every time he kicked. Now, 19 months old, we're focusing on more controlled kicking and using the arms more in the water.

For our purposes, the class provides early intervention to counteract his low muscle tone, also known as hypotonia, which is common in people with Down syndrome. In a blog post at Down Syndrome New Mama titled "Got Tone?" , Ds. Mama wrote: "Think of it as waking up sleeping muscles and then helping to pave the communication highway between the brain and the muscles." With practically every muscle in the body working when swimming, it's a great way to increase stimulation to the brain and nervous system. The water allows more freedom of movement and provides gentle, even resistance for Matthew to develop better muscle control, strength, coordination, and sense of balance.

How much has this helped Matthew?
To be honest, I have no way of telling exactly how much this swim class has helped his overall development. I do know that by giving him more learning opportunities through a wide variety of activities, I am contributing to his development in some way. More importantly, Matthew enjoys the water. That's what really matters.

Mother's Day Inspiration: The Special Mother

HAPPY MOTHER'S DAY!

I read this at Circle of Moms and thought that this beautiful story should be read by every mother of a child with special needs. It's a wonderful piece written by Erma Bombeck. You may need a kleenex or if you can get highly emotional like me, a super absorbent chamois may be better. Some of you may have already read this, but I'm sure it won't hurt to read it again. I've also added the story to my "Hot Chocolate for the Soul" list on my sidebar.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Mother of the Year 2009

Words from a friend and fellow mom who has a child with Down syndrome:

As parents of kids with special needs, we don't want our kids to be behind. We don't want them to suffer. We don't want to suffer ourselves. We want everyone to see the incredible potential that our child possesses! We don't want to be looked at with "I'm so sorry..." eyes. We are PROUD of everything our child has accomplished...and with good reason!

These words gave me more strength to forge ahead and do everything I can to enable him to be the best he can be. Only God knows Matthew's true potential and my job is to help him maximize everything he has been given so he can live a much more "typical" life with a wider range of choices than if I didn't put in the extra work required when raising a child with special needs.

Mother's Day is a few days away and apparently I was nominated Mother of the Year in 2009 - and WON! I made headlines everywhere and didn't even know it. (I'm having a hard time keeping a straight face as I write this). Just think, YOU are reading the blog of the woman who outshined Angelina Jolie. Don't believe me? Since I live in the Show-Me state (Missouri), I feel obliged to do just that. Here's proof. Click on the link below and watch the video that one of my aunts in the Philippines sent to me.

Mother of the Year 2009 video

Happy Mother's Day to all you supermoms!

Baby Boot Camp

Baby Boot Camp (also known as "our home") was lovingly and humorously coined by my mother-in-law and myself during Matthew's 1st year in life. Here's how it came to be.

Shortly after Matthew was born, he was diagnosed with Down syndrome. The pulmonary hypertension he had cleared about 5 days after he was born and thankfully he did not have any major heart defects. Right before we left the hospital, we signed up for the First Steps program, which provides early intervention services in Missouri.

A month after bringing him home from the hospital, we already had a Physical Therapist (PT) and Developmental Therapist (DT) see him. He was still battling jaundice and his thyroid level was still in question, but being new parents, we wanted to maximize every wakeful moment with him. When he was almost 4 months old, we added an Occupational Therapist (OT) to the team and a Speech Therapist (ST) when he was 9 months old. They are all wonderful people and make such a great team, always on the ball with Matthew's developmental stages and loaded with helpful information and suggestions on how I could teach Matthew at home in between therapy visits. When something really interests me, I try to learn everything I can about it. So being the nerd that I am, I wanted to learn everything about Down syndrome and how I could teach Matthew. I made sure I had books and more books and DVDs including:

• Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals by Patricia C. Winders


• Fine Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals by Maryanne Bruni


• Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals by Libby Kumin


• Babies with Down Syndrome: A New Parent's Guide by Karen Stray-Gundersen


• The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles by Joan Guthrie Medlen


• Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers by Patricia Logan Oelwein


• Down Syndrome: The First 18 Months (DVD)

In my opinion, these were all great reference materials, especially in between therapy visits. I remember referring to the Gross Motor Skills book a lot when Matthew was younger, since gross motor skills are really the first to develop and work on. I'd have the book out on the living room floor and Matthew next to me as I tried to help him learn the skills he was ready for or almost ready for. And so while my husband went to work in an office, most my days were spent at Baby Boot Camp.

We don't refer to our home as Baby Boot Camp these days anymore. Toddler Camp maybe? We haven't come up with a new name yet. In any case, here's a video of Matthew's first belly crawl - one of the outstanding achievements at Baby Boot Camp. He was just over a year old.

Music and Movement and Mad Tears III

I hope this is the last post I have to write about 'mad tears' (Related posts include Music and Movement and Mad Tears and Music and Movement and Mad Tears II). It makes me sad thinking about how unhappy Matthew was in the music and movement class yesterday. He had taken a long nap before the class but was especially clingy to me when he woke up. In hindsight, maybe going to the class yesterday was a mistake.

He put on his I'm-about-to-cry face as soon as the class instructor held him. On the one hand, he stayed in the class for the whole 30 minutes instead of just 20 minutes like he had the past few classes. On the other hand, it was 30 minutes of unhappiness. It was so nice that his Occupational therapist (OT) met us at the class and stayed in the class as Matthew's buddy while I watched from the tv screen in the other room. He recognized her and would've given her a big smile but he was just past the point of being consoled and persuaded to participate, despite his OT's efforts and calming techniques. He was constantly signing "all done" and just didn't want to be in the class.

Maybe Matthew was just having an off day. Maybe he's not ready to be separated from me for that long, which is totally understandable and expected given his age and attachment to me. Maybe he has associated the class with his previous negative experiences. Maybe all the activity is just too much for him right now. Maybe he has underlying sensory issues, but I would honestly be surprised by that since we go to other similar recreational/educational programs in town with no problems.

Despite the thumbs-down-big-pout vote from Matthew, I still think that this is a good special needs program, especially since it includes typically developing kiddos in the class. We'll try it one more time next week and I'll be in the class with him. If that still doesn't work, then I'll know he's just not ready for this particular class. If so, we'll pull out of the class and just get back into it when he's older. Either way, I just hope we can end the class on a positive note (and not feel like a bad mommy).

Breast to Bottle to Cup

19 months old tomorrow and Matthew still drinks his milk-based formula (for toddlers 9-24 months old) from a bottle. I have discussed most (if not all) the possibilities to switch him over to a cup completely with his Occupational Therapist (OT), Developmental Therapist (DT) and Speech Therapist (ST). We don't have any strong concerns about his oral motor tone. I think it boils down to his emotional attachment to the bottle. Perhaps he gets some kind of comfort or satisfaction from bottle drinking? I initially tried offering milk in a cup at snack time, you know, cut back one meal at a time. My efforts to wean him off the bottle have always been met with little hands pounding the food tray and waving away the cup. How does one be persistent enough with this without turning snack time or any mealtime into a milk battle? Why couldn't this be as easy as the transition from breast to bottle?

Yes, I was able to successfully nurse for 9 months and supplemented with pumped milk in a bottle. We used standard Dr. Brown's bottles, recommended to us by one of the specialists at the hospital when Matthew was born. Sure, there were concerns about the bottle promoting tongue protusion, a common issue for kids with Down syndrome. I had considered switching him to other bottles but I didn't. Why mess with something that was working well? The Dr. Brown's bottle seemed to prevent colic, spit-up, burping and gas (as it advertised). More importantly, Matthew was gaining weight so we knew he was getting enough. Matthew suckled and latched on well but there were many times when he would tire easily or fall asleep. This was expected though. Because of his low muscle tone, it took more effort for him to nurse. So I always pumped after nursing to make sure he also got the hindmilk he needed. Weaning him seemed to happen naturally as I began to pump more than nurse. Eventually I supplemented with formula when I wasn't producing enough. I think the fact that Matthew was already introduced to the bottle early on (starting when he was in the Special Nursery at the hospital) and that it was easier to drink out of the bottle helped him transition as easily as he did.

As every mom with a special needs child knows, the age ranges in lists of developmental milestones for typically developing kids do not apply. 'Stage Not Age' at Down Syndrome New Mama also points this out. The developmental chart in 'An Overview of the Development of Infants with Down Syndrome (0-5years)' available at Down Syndrome Online estimates 20 months as the average age that a child with Down syndrome would drink from a cup, with the age range being 12 to 30 months.

I introduced him to water in a Munchkin brand sippy cup and water in a clear open cup when he was around 8 or 9 months old with the goal of weaning him off the bottle by the time he turned 1. The new goal is "when he's ready". It's not that he won't drink from a cup at all. He can drink juice and water from his sippy cup and an open cup, with fairly good lip closure at the rim. But he flat out refuses milk in a cup. I've even tried other special cups without the spout, since the spouted sippy cup may encourage tongue protusion just like the bottle. He hasn't warmed up to any of these cups yet. The clear and pink ones are called Little Spill cups that Matthew's OT got for him to try. The only place I have found them is at Beyond Play online. They also have flexi cups (not pictured here) but Matthew only tossed around the one he had. The Playtex cup is available at Target.



In the back of my mind, I know he will agree to drink milk from a cup. Just 'when he's ready'.

Blog Housekeeping

Welcome to the new and improved Bill and Ria blog! Being new to the blogosphere, I wanted to learn how to build a better blog. I found a wealth of information in a free e-book called Blogging in Pink: A Woman's Guide by Michelle Mitchell at Scribbit. I thought blogging would be mini get-away from household chores during the day but it turns out there is blog housekeeping to be done too. Oh well.

The most obvious change: a new header, which I custom designed myself on a website called Banner Fans. The best part: it was free! The worst part: figuring out how to edit html coding on my blog template in order to get in exactly the right spot on the page. I have a business and finance background and so to me, trying to understand the html code is akin to deciphering hieroglyphics. I didn't think it would that difficult. 3 or 4 frustrating hours later, I finally found a very helpful article simply titled Blog Banner at a website called Kenwooi. It specifically addressed the problem I was having. And here is my new header, perfectly centered at the top of the page. Ta-dah!

In case you don't remember the old header or are new to my blog, here is what it looked like:

Another improvement on my blog is the addition of a menu bar directly below the header. This did not come standard with the blog template that I chose. While it's not perfect, I'm pretty happy with how it works. Click on the "About" link and you will find more information about this blog and about our family. Click on the "Contact" link and you will be taken to a page with a form you can fill out to send a message directly to me, which will not appear anywhere on the blog. I was able to create the fancy contact form using WebFormDesigner. Click on the "Home" link and you will be taken to the latest published post.

So with my virtual housekeeping done for the day, I best direct my attention to some real housekeeping starting with the cheerios on the floor that Matthew had flung from his chair at the dining table. Or maybe we should get a yellow lab? hmmm.......NAH! (not yet).