One side is a building block base. Matthew used to be interested in knocking down blocks only. Because of this table, coupled with some hand over hand guidance and lots of praise, Matthew has become a master stacker. He can stack up to six blocks all by himself. The lego-like blocks, which come with the table, are made for toddlers who may not have the more precise hand-eye coordination required for Lego Duplo, Mega Bloks, or other similar toys. The blocks easily slide into place, which make them extremely easy to stack, AND they stay on until Matthew acts like Godzilla and knocks them down.
The other side of the table has a variety of interactive toys including a train on the circular track, which goes round and round when activated with the lever on the table, a rotary phone, shape sorter, a small flipbook, a clock, and a button to press for train sounds. Matthew hasn't quite figured out the lever for the train track yet. Or maybe he does know how the lever works and is just more interested in just moving the track manually. In any case, this table keeps him entertained for several minutes a day everyday. Today, he was very interested in the phone, putting it up to his ear all the time.
The Verdict Great for fine motor skills, some pretend play, cognitive skills, and provides lots of easy talking points to help develop language. It's sturdy and even has storage for the blocks and its other accessories underneath the table. Out of the numerous activity tables for babies and toddlers, it seems like Chicco is the only one (that I have found) who manufactures two-sided tables. This may or may not provide more value for your $$, depending on how you view it. In our case, we have friends who offered to lend this table to us (thank you!!) since their daughter had already outgrown it.
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.
I am happy to announce that Matthew is now drinking milk from a sippy cup and we are celebrating! Good-bye bottle!
Matthew's Occupational Therapist (OT), who is also a feeding specialist, offered some guidelines for cup drinking. This information is not exactly out of a text book. It is collective knowledge from an OT, Speech Therapist (ST) and Developmental Therapist (DT), who requested to remain anonymous. With their permission, I am sharing it with you (in green text). Keep in mind that these are just guidelines, not strict rules. Every therapist is different. Every family is different. Every child is different. We do what we have to do given our own set of variables.
How Do I Know When My Child Is Ready For A Cup? Age 3-6 months - hold or supports bottle during feeding Age 6-9 months - closes lips when swallowing Age 9-12 months - closes mouth on rim of cup but may lose some liquid from corners of mouth Age 12-18 months - may drink from a cup independently with frequent spills; sips liquid from a cup using straw In general, a child is ready to use a cup if they can sit well and play/ manipulate toys in sitting. A child should be able to drink from a cup without tipping head backwards to allow for a good swallow.
Types of Cups Use or over use of sippy/spout cups may be a contributing factor in speech delays for some children.
If the sippy/spout cup has a valve, a child has to suck harder which can delay or interfere with the development of a good swallow pattern. It can also cause children to revert back to stronger backward-forward suckle movements of the tongue that they used with the bottle. This occurs when the tongue is placed more forward in the mouth vs. more in the back of the mouth. This may also interfere with oral development especially if there are other underlying oral issues.
The size of the spout on a sippy cup may not encourage as good of a lip seal, tongue placement, or lip placement as on an open cup. Good lip seal and strength, as well as tongue placement, are essential for producing some speech sounds.
What is Actually Recommended? This varies from child to child as well as with routines of the family. In general, straw drinking or use of a small open cup is preferred. A small Tupperware 2 ounce container or small medicine cup may be used initially as they allow small amounts of liquid that are easy to handle. It is also good to use nectar or thicker drinks when starting out as they are easier to manage.
If you must use spill proof - straws or straw cups (e.g. sports bottle type) are a good alternative. They encourage good lip seal and overall good oral motor strength. If a spout cup is used, the most desirable type is the type without a valve such as the Tupperware thin (and smaller) spout or any type that has the shape of an open cup. These can be found on line at Talk Tools (Recessed Lid Cup) or Maddak, Inc. (Little Spill Drinking Cup).
Children need opportunities to learn to drink from an open cup. Practice (and spills that come with it) makes perfect! This helps stabilize the jaw which is very important in oral motor, feeding and speech development. You can start with just one ounce of liquid.
In my Breast to Bottle to Cup post on May 4, 2009, I wrote about how Matthew transitioned with drinking milk from breast to bottle and not having any success with milk in a cup. I tried many kinds of cups - sippy cups, straw cups, recessed lid cups - and appreciate the encouragement and suggestions I received through comments in Breast to Bottle to Cup. Matthew was fully capable of drinking water or juice from any of these cups. He just was not willing to drink milk from them. The one-meal-at-a-time transition method did not work as he just refused to drink and knew he was getting a bottle at the next meal anyway.
So, on June 1, my husband suggested that we just stop offering the bottle completely. Initially, I wasn't too sure about our new strategy but we did it. The change was met with much resistance and tears as we explained that we drink milk from cups. He unhappily resigned to drinking his milk from the sippy cup. His intake decreased as he was getting used to the change, but on the bright side, he ate more. It took two full weeks before he completely accepted milk from the sippy cup without protest. Now that he's used to the sippy cup, his milk consumption is back up. Over time, we hope to move to a cup without a spout, including straw cups. Baby steps.
A few examples of straw cups include: the Sip-Tip cup from Beyond Play, which allows you to pump the liquid up the straw; the Honeybear w/ Flex Straw from Beyond Play or Talk Tools; the Nuby Grip 'n Sip with Flip-It Straw from Target or Walmart, but be warned that this comes with a built-in valve which may make it difficult for some to drink (Matthew has not succeeded with this); a plain open cup with a straw (be prepared for spills!); and the Leakproof Juice Box made by Arrow Plastic Manufacturing Company, which I found in the plastic container aisle at Target. On the one hand, we know that the sippy cup is not ideal because of the protruding spout. But on the other hand, it's our first baby step away from the bottle. And while Matthew's OT agrees that this is not ideal, she supports our decision to use the sippy cup for milk now and understands that we just have to do what works sometimes. In the meantime, Matthew still gets plenty of practice drinking juice or water from an open cup or through a straw.
I borrowed "The New Language of Toys: Teaching Communication Skills to Children with Special Needs (2nd ed, 1996)" by Sue Schwartz, PhD and Joan E. Heller Miller, Ed.M from the Down Syndrome Association of Greater St. Louis (DSAGSL). A couple of Matthew's therapists use this book as a reference. That's a good enough clue for me to know this is a good book. I liked this book so much that I ordered my own copy - the 3rd edition.
The concept of the book revolves around encouraging and enhancing communication development through playing with toys. The authors write that the book is designed "to be used with any child who has a language delay, whatever the cause may be." I like that the book is arranged by language developmental ages from birth to 6 years, with a section that helps me gauge what developmental age (as opposed to chronological age) best fits Matthew.
A list of suggested toys (store-bought and homemade) and exercises with helpful toy dialogues, a list of suggested vocabulary and communication concepts, and a list of children's books are included in each section, all of which are appropriate for the level of language development. A checklist of developmental milestones to track progress is also available at the end of each section. The developmental milestone checklist is similar in format to the Developmental Journal for Babies and Children with Down Syndrome but far less comprehensive. In any case, it is sufficient for the purpose of determining developmental age.
Matthew is 20 months old (chronological age). According to the language, cognitive, and physical development levels described in the book, Matthew fits into the 12-15 month developmental age range. This is in line with his therapists' evaluation of his language and physical skills. Although I mainly refer to the suggested activities in this age range, there are some activities and toys in the 15-24 month range that I am able to adapt to Matthew's level of language development.
Since I stay home and do not have other kids yet, I spend my free time educating myself (and blogging) so I can follow through with the various therapies more efficiently in between visits. Matthew currently sees a Physical Therapist (PT) every two weeks, a Developmental Therapist (DT), also known as a Special Instructor, every two weeks, an Occupational Therapist (OT) twice a month, and a Speech Therapist (ST) twice a month. All the activities they do with him are specifically designed to achieve the goals we set in our Individualized Family Service Plan (IFSP).
In addition to the therapists' suggestions, I can look through this book for more developmental age-appropriate ideas for activities instead of trying to pull something out of thin air. I especially like the list of books since it makes it easier for me to know what to look for at our local library.
If Marketing has its 4 P's (Price, Product, Place, Promotion), I think Early Intervention should adhere to 4 P's too: Professional, Personable, Positive, Possibilities.
We enrolled in First Steps Early Intervention the day before we left the hospital. Physical Therapy (PT) and Developmental Therapy (DT), also known as Special Instruction, began when Matthew was a month old. We added Occupational Therapy (OT) when Matthew was almost 4 months old and Speech Therapy (ST) when Matthew was 9 months old. Matthew was so little and the thought of all these therapies on our baby, our first and only child nonetheless, was a very strange notion to us. But we knew it was necessary.
There are times when I'd be so overwhelmed and get frustrated with myself. Am I doing enough? It would feel like wading through waist-deep mud or sometimes running into a brick wall.
His therapists always reassure me that I am doing a wonderful job following through with activities/ exercises in between sessions and that it is normal to have ebbs and flows in Matthew's development, in any child's development. They encourage me to keep at it. They always guide me with helpful suggestions when addressing any concerns I may have. They celebrate Matthew's EVERY achievement with us. They believe in his capabilities.
I am fortunate and thankful that I get along with all four therapists who work with Matthew. They work as a team and communicate well with each other, which is just as important as them working and communicating well with me. As a team, they are Professional, Personable, Positive, and see Matthew's Possibilities.
Tonight, First Steps is hosting a dinner in honor of the therapists in our area. I had the opportunity to contribute a door prize. Since all the therapists in the area are women, I contributed a cute purse that is handmade out of a placemat. I bought it from my sister-in-law's long-time friend, who currently runs her own business called Stitches and Strings, specializing in handmade personalized gifts including baby gifts, placemat purses, bath towels, cosmetic bags, and keychains." The door prizes that First Steps receives will be distributed randomly. I'm hoping one of Matthew's therapists gets this Purse.
UPDATE as of 6/26/2009: I just found out that one of Matthew's therapists DID get this purse!
Are you familiar with the "in-and-out" developmental stage that most, if not all, toddlers go through? This is when they are fascinated with dumping or taking things out of containers and putting them back in.
Matthew developed this interest when he was around 15 months old. We mainly used building blocks in a small plastic box with a wide opening to practice this skill. He was initially interested in dumping the blocks out of the plastic box. I'd always show him how to put things back in by showing him how I'd let go of the block so it would drop into the plastic box. Letting go is not an easy concept to learn. Eventually, he got it and when he did, that's all he wanted to do.
Now, he's an expert at putting blocks away into a container with a wide opening. While it's important for him to continue practicing this skill, I think it's also important to offer challenges and change it up a little while keeping it interesting.
Clothespins In A Milk Jug Clothespins in a plastic milk jug was the perfect homemade toy for the challenge. I just needed wooden clothespins, a clean 1/2 gallon plastic milk jug, and lots of clapping. Matthew enjoys this game. The very first time we played it, he and I sat on the kitchen floor for at least 25 minutes dropping clothespins into the milk jug. Taking clothespins out of the milk jug will be another game when he's older.
Links In A Can Another similar (in concept) homemade toy/ activity that we like is plastic links/ rings in a can. I used Fisher Price links and a clean, empty can of almonds. I cut out slot in the plastic lid just big enough for the links. Matthew just loves it! We took this with us to lunch at a restaurant on Father's Day and it kept him busy after he was done eating. It gave me a chance to savor my meal!
The Verdict Simple, economical, and fun. Both toys help develop fine motor skills, hand-eye coordination, and focus or concentration. I view them as a step short of shape sorting (that's a tongue twister!), which will require more accuracy and shape recognition.
There are so many toys, both store-bought and homemade, that help develop these skills. Another good one is the Fisher Price Laugh and Learn Piggy Bank. What similar toys do your kids like?
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.
Thank you to Lisa at Finnian's Journey for presenting me with the Queen of All Things Award (about a month ago and I'm just now getting to it. My sincere apologies.) and Monica at Monkey Musings for presenting me with the Honest Scrap Award. I am honored and flattered to be chosen, especially by bloggers who are awesome, inspirational, and honest.
Queen of All Things Award Accepting this award requires that I share seven things that make me awesome. Then I must pass it on to seven bloggers whom I think are awesome.
7 things that make me awesome:
1. I have the determination to move mountains in doing everything I can for my son's development and future.
2. When the going gets tough, I forge on.
3. I had the courage to move half way across the globe to live with an awesome guy in 2003. Other than my in-laws, I have no relatives in Missouri.
4. I married that awesome guy in 2005. He completes me.
5. I have an awesome son who has taught me so much more about what is truly important in life in 20 months than I had learned in 30 years. He makes me strive harder to be a better person. As I help him realize his full potential, I am achieving my own at the same time.
6. I have a loving, supportive, and awesome family: parents, in-laws, grandparents, aunts, uncles, cousins, nephews, nieces.
7. I have awesome friends all over the world.
I've been following many blogs and enjoying them all, so choosing only seven is difficult. In my mind, they are all awesome but because of the guidelines set for this award, I have to pick seven (in no particular order). Please put your hands together for these awesome bloggers:
Honest Scrap Award Accepting this award, requires that I do the following: 1) Say thanks and give a link to the presenter of the award. 2) Share "ten honest things" about myself. 3) Present this award to 7 others whose blogs I find brilliant in content and/or design, or those who have encouraged me. 4) Tell those 7 people that they've been awarded HONEST SCRAP and inform them of these guidelines in receiving it.
Ten honest things about myself:
1. Like Monica at Monkey Musings, I love blogging and meeting other moms and dads who have kids with Down syndrome, as well as individuals who have Down syndrome, through blogging.
2. I am very competitive, especially at word games like Scrabble and Boggle.
3. I'm Filipino but fellow Filipinos usually mistake me for being Chinese.
4. I was born in Manila, Philippines(a predominantly Catholic country), went to pre-school, kindergarten and grade school in Brunei(a predominantly Muslim country in Asia), high school and college back in the Philippines, and earned a Masters degree in Melbourne, Australia. I can still speak, read, and write in Tagalog (Filipino) albeit a little rusty. I can still understand basic Malay. And in case you are wondering, I did not develop an Aussie accent or a taste for vegemite while in Australia.
5. I only learned to speak Tagalog (official language of the Philippines) when I was in high school. I had to take special classes during my 1st and 2nd year and my grades were in the 90's. When I was required to be in the regular class in my 3rd and 4th year, I was barely passing my Filipino class.
6. I am fortunate to be able to stay home with Matthew.
7. My nickname "Ria" means "happy" in Malay.
8. I am very interested in opportunities to advocate for my son and Down syndrome.
9. I am an only child. Growing up, I'd always wished for siblings. I would like Matthew to have a brother or sister someday.
10. I am afraid of the dark.
In no particular order, I am pleased to present this award to seven (of the many) blogs that I enjoy following:
A note to those I have passed these awards to: It is fun to be acknowledged, isn't it? However, I understand if you are busy or maybe just do not want to participate for whatever reason. It won't hurt my feelings if you are not able to pass on the award.
1. Down syndrome is just a small part of the bigger picture.
2. Patience, patience, patience. 3. A smile from a little one can brighten anyone's day. 4. If you make peace with your expectations and work hard, then possibilities increase exponentially. 5. Concern and care for the family knows no bounds - unconditional love.
I'd like to take this opportunity to acknowledge other dads in the blogosphere sharing their perspectives of life with a child who has Down syndrome. I have been following and enjoying your blogs. Thank you for writing. If I missed anyone, please leave me a comment and I will add them to my blogroll too.
"Tails" by Matthew Van Fleet is a very cute, playful touch and feel board book. Matthew's speech therapist had this book and brought it for a few therapy sessions to read to him. I recently found this at our local library and borrowed it.
I'd say it's a big step above the other simpler touch and feel board books. This book has more variety of textures and more interesting written and illustrated content and design. Except for the thin pig's tail, which was torn off the library copy, the book is well-constructed. The pages are double sided cardboard material with pull-out tabs on some pages that make the tails wag and lift-up-flaps on other pages that reveal a bigger picture, like the peacock showing off his tail. Matthew enjoys pulling on the wild boar's tail. It even has a scratch n' sniff skunk tail! But I personally don't encourage Matthew to scratch it as I don't need to be reminded of how smelly a skunk is. Around here, usually in February and March, there are dozens of skunks that don't make it to the other side of the highway. I'm just glad I haven't been the unfortunate driver that ran over one.
Overall, I say this is a good book. It's a fast read and action-packed so it's perfect for the stage that Matthew is in right now even if it's rated for kids 2 to 5. He enjoys turning the pages and attends relatively better to less wordy books. And for the few minutes that we're reading this book, Yuri, our cat, doesn't have to worry about Matthew going after his tail.
Being pregnant with your first child is one of the most exciting experiences in a lifetime. It can also be overwhelming with so many baby products to choose from. It's always nice to have a little guidance from family and friends who have the experience of taking care of a little one relatively fresh in their minds. In my case, my sister-in-law offered her 2 cents on things that worked for her when her kids were babies.
So, what are the things we shouldn't be without? It's all relative. Personal preferences, unique circumstances, and varying family cultures and lifestyles will dictate what specific products we end up using. Every baby is different and every parent has to do what works for them. I've read other moms' top 10 lists of gotta-haves ("10 Things Mama's Gotta Have" at Down Syndrome New Mama and "Down Syndrome Awareness--Gotta Have Its AND How I Used Its" at Take a Walk on the Happy Side) and it's interesting to note similarities and differences but the gist is we want our babies to have a loving, safe, comfortable, and developmentally stimulating environment.
Here is my top 10 list of things that made my life with baby Matthew a little easier (not in any order). A couple of these things were brand new and store-bought by us, many were gifts at the baby shower, a couple were hand-me-downs, and one was a just-because gift. Many, if not all, of these items can also be found at second-hand stores, such as Once Upon A Child, and garage sales.
Boppy Pillow Some moms rely on these, some don't. I was one that did. It made it easier for me to hold Matthew at a comfortable level while I nursed him. When he was a few months older and almost sitting unsupported (not reliably), we put the boppy around him in case he fell sideways or backwards. We also tried to use the boppy for tummy time but we weren't very successful. "Down Syndrome Awareness--Gotta Have Its AND How I Used Its" at Take a Walk on the Happy Side has very helpful suggestions, whether your baby has Down syndrome or not, for tummy time sessions using rolled up blankets or towels.
Crib Toys: Alphabet Soup Musical Mobile and Fisher-Price Ocean Wonders Aquarium I opted for this musical mobile for several reasons: it was brightly colored and matched the theme of the room. While this mobile only played one song (Rock-a-Bye Baby) and it had be wound manually, the music captivates Matthew. It's one thing that I still use to calm him down when he wakes up very upset.
We have the older model of the Ocean Wonders Aquarium, which does not have a remote control. The newer model does. This crib toy is advertised to soothe baby to sleep. Depending on your baby's sleep time routine and what is soothing to your baby, this may or may not work as a soothing device. (I personally find it very soothing and would like one for myself.) I've only used this once or twice to help him fall back asleep in the middle of the night when he was a baby. When he was able to sit up on his own, I had the brilliant idea of leaving it on thinking Matthew could start the music on his own by pressing the big blue button in the center and fall asleep to the soothing classical lullabies, bubbles, fish motions, and soft lights that fade on and off to the music. However, my plan was not so brilliant. Matthew played with it for an hour before he fell asleep. So now, I leave it off at night and only turn it on for him in the morning. The aquarium model has two other buttons that manually activate the starfish and clam. Matthew stays up for a few minutes to play with those buttons but thankfully he doesn't find them interesting enough to stay up an extra hour.
Maybe there are better crib toys available but these suit us just fine.
Sony 900 MHz BabyCall Nursery Monitor We still use this basic monitor and take it with us everytime we spend the night away from home. Sometimes I wonder if the baby monitors with video work just as well or better. But I'm obviously not curious enough to go out and buy one. This suits our needs. I've grown accustomed to listening to Matthew's different cries and know when he really needs me or not. The receiver is very sound sensitive too. I can hear Matthew rolling over or changing positions in bed when he's asleep.
The First Years Sure Comfort Newborn to Toddler Tub Simple, basic, and easy to clean. I wish mine came with the mesh net for newborns, but I managed just fine without it. I used this until Matthew was maybe 15 months old. When he was able to sit unsupported and move from a sitting position to his hands and knees more reliably, I began to bathe him in the big tub with a bath mat suctioned to the bottom so he won't slip while in it.
Baby Einstein Seek & Discover Activity Gym There are many other activity gyms to choose from, some with more bells and whistles (more expensive) and some simpler (less expensive). I think they all generally serve the same purpose. We got this because my sister-in-law recommended it.
We used this often, throughout the day, everyday. It was the perfect little play zone for tummy time and to practice rolling and reaching. The bold and bright colors provided great visual stimulation. While I wished the mirror was bigger, the music and lights star was an all-time favorite. It had two settings: continuous music play mode and the motion-activated mode, which worked for teaching cause and effect. We even attached it to his other toys after he outgrew the gym.
The First Years Newborn to Toddler Reclining Feeding Seat This was another recommendation from my sister-in-law. It's a space saver, portable (but not foldable), and easy to clean. It has two height adjustment positions and three reclining positions. We first used this when we introduced Matthew to rice cereal. Overall, we like this feeding seat as it serves its purpose. But to be honest, we're looking into getting another booster seat with a lower back. Matthew has gotten into a bad habit of rocking and hitting his head against the high back of this seat. He doesn't do it anywhere else but in this seat so his Occupational Therapist (OT) doesn't think it's sensory-seeking behavior. But that's another story for another day.
Evenflo Exersaucer I'm not sure what model we used but I know it is similar to the Mega model. We borrowed it from my sister-in-law when Matthew was 4 months old. At the time, he could hold his head up but he had not developed good trunk strength. We tucked rolled up receiving blankets around him in the exersaucer and put a pillow or phone books at the base so his feet could touch the "bottom".
The exersaucer was one of the things that helped Matthew develop trunk strength as he tried to stay upright in it, especially when I removed the rolled up receiving blankets around him. The colorful toys were appealing and good for reaching, grabbing and chewing. Being upright in the exersaucer for 15 minutes at a time also allowed Matthew a different play perspective, other than playing on his back or tummy in his baby gym or in a reclined position in his rocker.
Fisher-Price Rainforest Jumperoo If you have a baby who loves action, music and lights, get a jumperoo. When Matthew had developed strong head and trunk control (around 10 months old), we got him this jumperoo and he would bounce to his heart's content, giggling and smiling the whole time. This was great entertainment in addition to being good for visual and auditory stimulation, leg strengthening, learning cause and effect, and even eye-hand coordination. The toys on it were fun, colorful, and easy to operate, except for the tiger that popped up when a button was pushed. It really didn't pop up much and so I deemed it useless. The toys overhead were great for reaching and Matthew pulled on them constantly.
Bumbo Seat I never knew such a seat existed until one of Matthew's therapists brought it over one day. It was perfect for helping Matthew learn to sit. There are other ways to help a baby learn to sit and strengthen the torso, such as using pillows, but this was easier. Matthew didn't mind being in it at all and his therapist let us borrow it until another family needed it. A few weeks later, Matthew's godmother came by with a bumbo seat just for him! Lucky boy!
Fisher-Price Learning Patterns Infant-to-Toddler Rocker When Matthew was 0-2 months old, we used an automated swing to help soothe him as well, as relieve my aching arms. But when he was 2 months old, the swing didn't cut it anymore so we turned to this hand-me-down. It was roomy, sturdy, and had a switch for "calming vibrations", the sensation of which I likened to sitting in a massage chair. Although it didn't fold up for easier transporting, it was relatively easy enough for us to throw into the trunk of the car and ready for use at Grandma's house. The disadvantage of using this is you have to manually rock it with your foot. I didn't mind it. More importantly, I didn't have other kids to watch around the house.
Would you believe me if I told you that Matthew learned to rock this on his own? He did when he was 7 months old! I'd say "Rock, rock, rock" and he'd kick his legs up in the air toward his face and let them fall back down. This motion caused it to rock. I thought this was a great way to learn cause and effect. He used to rock his own pumpkin-type car seat too, much to the amazement of everyone that saw him do it.
We bought the LeapFrog Fridge DJ Magnetic Learning Radio for Matthew when he was not able to pull himself up on the fridge yet. At the time, the Radio was better suited for Matthew compared to the LeapFrog Fridge Phonics Magnetic Letter Set and LeapFrog Fridge Farm Magnetic Animal Set, which look like good toys but seemed to be beyond his developmental level. He wasn't ready for matching farm animals and the music button on the Fridge Phonics required him to isolate his index finger, which he wasn't doing yet (still isn't), in order to press the tiny music button. Plus, he loved to toss everything so the letters and farm animals would have ended up all over the kitchen floor. (Maybe when he's a few months older?)
The Learning Radio has three 'stations' and at least 3 or 4 songs per station. While the graphics aren't fancy, they still capture Matthew's interest. The button is easy to press, even with just the palm of his hand.
Our goal: to build leg strength, coordination and balance for getting to a standing position using the fridge door. Learning to pull up on a surface perpendicular to the floor is different than pulling up on the coffee table since there is less support for his arms and he has to rely more on his legs and balance to get up. We started with it positioned close to the bottom of the fridge door so he could learn to press the button and warm up to the toy. He was crawling and could easily use his palm to press the button to turn it on. As soon as we saw he couldn't get enough of it, we moved it up higher just beyond his reach. This encouraged him to pull himself up on the fridge door, motivated by the music and dancing scoreboard-type graphics. First, he'd get into a kneeling position and press the button. Once he was comfortable doing this, we moved it higher again, challenging him to reach for that button to turn it on. He eventually gained the ability and confidence to stand. These days, he'll even use one hand instead of two to lean on the fridge door.
The Verdict For $21.99 at amazon.com, this is a good buy for us. It motivated Matthew to learn to move to a standing position against a flat surface perpendicular to the floor, ie fridge door. As an added bonus, Matthew learned to press the button with just his fingers instead of using his palm. He has also learned to take it off the fridge and put it back on. We haven't worked on turning the dial yet to change the station. We will when he's a little older.
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.
In Mi Casa Es Su Casa (My Home Is Your Home), I wrote about looking forward to friends spending the weekend with us - friends whom we were meeting for the first time in person. They arrived on Thursday evening from Illinois, near Chicago, which is about a 7-hour drive.
As soon as their little girl, Gabbie, walked into our house, she came right up to Matthew and wanted to shake his hand! Unfortunately, I hadn't taught Matthew how to shake hands yet. He can, however, give high-5's so we tried to high-5 Gabbie instead. Matthew wasted no time in charming Jodee and Jen with his hilarious fake laugh and toothy grins. Gabbie, who is 2 weeks younger than Matthew, impressed us with her walking prowess and consistent vocalizations.
Toddler "interaction" is always so entertaining, even if merely playing nicely next to each other and not necessarily involving one another.
They were so cute playing next to each other in the corn box at Purina Farms.
They had a blast in our backyard "toddler water park", which is comprised of a water table, baby pool, and sprinkler mat.
They enjoyed the wagon ride together. They had fun on the swings at the park. The weekend was not without a first for me, an element of danger, if you will. I saw a 3-foot long copperhead snake for the first time in my 6 years of living here. Ack! It was in the grass at the winery. I was maybe two feet away from it when I spotted it. I backed away fearfully and quickly. Jodee took pictures.
We had an awesome time showing them around town and getting to know them. We're already looking forward to the next opportunity to get together. Because of our mutual friend, Angela, we had the pleasure of meeting such a great family. Because of Matthew and Gabbie, our lives are enriched with more wonderful friendships.
Thank you to everyone who joined Team Matthew for our first Buddy Walk in Forest Park, St. Louis today. I was happy to be surrounded by many people I love - uncles, aunties, cousins, and friends. You made my day extra special and memorable.
The weather forecast threatened scattered thunderstorms but everyone still came, looking sharp in the team shirts that my Mommy made. Thank you, Auntie Kris for suggesting the perfect caption "Powered by Smiles". I'm so glad we didn't get any thunderstorms at all.
Thank you to everyone who sponsored our walk and cheered us on. Team Matthew raised a little over $600 for the Down Syndrome Association of Greater St. Louis (DSAGSL), which is an organization that provides services and support for individuals with Down syndrome like myself.
I hope everyone had fun. GO TEAM MATTHEW! Let's do this again next year!
I never tire of inspirational books, including children's books. This book, authored by Julie A. Bouwkamp, does not disappoint. While the target readers are siblings, cousins, classmates, and young friends of the child with Down syndrome, adults will delight in reading this book too. I certainly appreciated the awesome message captured through its simplicity and colorful images.
It is written from the point of view of a young child, Ben, who has Down syndrome. He starts by introducing himself and asking if you can guess his secret. He proceeds to provide clues, talking about the highlights in his life (like celebrating his 3rd birthday and going to the beach) and lowlights (time-out in the corner for being naughty), all of which many young readers without Down syndrome can easily relate to. Ben shares his secret towards the end of the book with an explanation of what it means. I find the encouragement to be friends at the end of the book very heartwarming.
Friends. I can't (and refuse to) imagine our lives without friends. Our friends are driving in from Illinois and arriving at our house this evening. They'll be staying with us through the weekend. Friends that we had never met before except via e-mails and facebook since 2007, the year Matthew was born.
They have a little girl, Gabbie, born 2 weeks after Matthew. She is their first and only child, just like Matthew is ours. Their experience at the hospital mirrored ours. They didn't know that their little girl had Down syndrome until after she was born. The initial feelings they had after receiving the diagnosis echoed ours. So did their resolve to be the best parents they can be in raising someone with special needs. It didn't take too many emails between us to see what wonderful, caring, loving parents they are.
Another common thread we share is a friend, Angela, who now lives in California. She is one of my close friends from high school in the Philippines. She is a good friend to Jodee & Jen and went to college with them in the Philippines. It was her brilliant idea to introduce us via e-mail. Jen and I have been trading e-mails ever since, connected by that wonderful extra 21st chromosome our kids have.
Today, we'll finally get to meet them in person. We're very excited. The guest room is ready for them to stay in until Sunday. The house looks generally presentable. Some of Matthew's toys litter the living room floor, a welcome sign for any toddler. We're ready!
Sometimes the simple toys are the best toys. While these "Take n' Toss" plastic cups aren't exactly toys, they provide Matthew with just as much entertainment as any other variety of stacking and nesting cups available at most toy stores.
We discovered this game when Matthew found the plastic cups that I keep in a bottom drawer in our kitchen. Currently, Matthew is in the 'open-and-close-drawers-and-doors' stage and the 'stack-everything-and-anything' stage.
Stacking and nesting cups help develop eye-hand coordination skills, as Matthew demonstrates in this video.
After attempting a previous music and movement class and not quite succeeding, we're trying a different music class called Kindermusik. I had been eyeing it before but cost for the class during the regular schoolyear was a deterrent. In the summer though, they have a summer program that only goes for five days. This year, it's from June 8 to 12, from 10-11 am each day for kids 18 months to 3 years old.
The premise of the Kindermusik class, for those who are not familiar, is that the singing, playing, moving, and interaction in the ABC Music & Me class enhance young children's "emotional, social, physical, and cognitive growth. Inhibitions fall away, self-esteem grows, and social skills develop. Through moving, dancing, and playing instruments, children also develop muscle control and coordination. It helps children to learn how to learn and have fun while they're at it." It's really much like the goals of the other class.
Both Kindermusik and the other music class are good programs. The difference lies in structure and set-up. In Kindermusik, I stay with Matthew - sing the songs and move around with him - during the hour-long class. In the other class, he was assigned a buddy during the 30-minute class while I waited in another room. The fact that I stay with him is key for his success in the class - no melt-downs because of separation anxiety.
We've only attended one class so far but it already feels like a good fit for Matthew. He and I participated in most of the activities and it was a very positive experience for him despite being the only 20-month old toddler in the class who wasn't walking independently yet. He was also the only one in the class with special needs, ie Down syndrome. But no one seemed to know that except the instructor and a friend (and neighbor), who was in the class with her adorable little girl.
I prefer not to tell people who don't know us unless I think they should know or if I'm asked specifically. It's not because I dread any possible awkward reaction, but it's simply because I want them to get to know Matthew for who he is first, as Matthew, not "the Down syndrome kid". Many times I wonder if people who don't know us can tell at first or even second glance. Through my eyes, I think Matthew looks so much like me that the slanted eyes and flat nose bridge just seem like features he inherited from me and not from having an extra 21st chromosome.
If my eyes were a pair of eyeglasses, I'd happily lend them to everyone so they could see what I see when I look at Matthew -- a makes-me-laugh-drives-me-crazy-sometimes-heaven-sent-biter-smarter-than-he-lets-on-wonderful-wouldn't change him for the world-blessing little boy.
"What an adorable little girl!" That's what I probably would've heard had I waited until Matthew was a year old to get his hair cut. And if I waited until this month, he would probably have shoulder-length hair.
He was born with a head full of hair. Some babies who have hair at birth, lose the hair at some point and regrow new hair. Not Matthew. His just kept growing longer and thicker. He didn't lose any of it. He had 3 haircuts at The Classic Comb, a salon in town, before his first birthday. To date, he has already had 8 haircuts. That's a few more haircuts than a little boy OR girl his age would have had, isn't it?
At the salon, I always have the cape around me and him on my lap without a cape (he dislikes it). We end up with cut hair all over him and just a little bit on me. He doesn't really mind the hairy situation but I don't want the hair in his carseat so I have always brought an extra set of clothes to change him into before we leave the salon. Seven times, we did that. Finally, at his 8th hair appointment, I think I have a solution to keep most of the hair off him. I had him wear one of my shirts.
I borrowed this book from the Down Syndrome Association of Greater St. Louis (DSAGSL) since our local library did not have it. Edited and published by Stacy and Michelle Tetschner, it is packed with positively uplifting experiences from families and individuals who have a child, grandchild, friend, or acquaintance with Down syndrome. As described on their website, "Windows Into Heaven is a collection of stories of inspiration, love, and acceptance from those families and individuals who have been positively touched by Down Syndrome."
Every single story in this book moved me to tears - joyful tears. I reminisced and empathized with some stories about how the family's journey began. I reflected on how much Matthew, who is only less than 2 years old, is already touching the lives of family and friends, near and far. I daydreamed about the possibilities in our future and where our journey with Matthew would take us.
I'll be recommending this book to our local library. I've also added it to my wishlist to own someday. In my opinion, the book is a great positive resource for parents beginning their journey, for families already on this road less travelled, for relatives and friends travelling alongside of them, and for people we may meet along the way.
"...their discovery could provide a beacon to scientists developing treatments and preventive medications designed to be broadly effective against cancer, wherever it resides in the body."
"The scientists discovered that the extra chromosome carried by people with Down syndrome - which causes the condition's distinctive features - harbors a gene responsible for starving tumors of the blood they need to survive and flourish."
"...these individuals with Downs potentially hold a secret that might lead to quite substantial and revolutionary new treatments for cancer."
Note that this significant finding connects the Down syndrome gene to possibly developing treatments and preventive medications to solid tumors, excuding leukemia, which is a blood-borne cancer.
Cancer is hereditary in our family, at least on my dad's side of the family. Two years ago, my grandpa (my dad's dad) in the Philippines was diagnosed with stage 4 colon cancer and passed away a few months later. I found out about his diagnosis via an overseas phone call from my dad, which was coincidentally the same day that I found out I was pregnant with Matthew. The fact that I got happy news and sad news in one day doesn't indicate anything but pure coincidence. But because of the diagnoses of cancer and Down syndrome with two people near and dear to me, this news article struck a chord with me.
I look at Matthew and remember what my aunt had said when he was born: "Matthew has yet to touch so many people's lives in the many years to come!" I never imagined that one of the ways could possibly be through genetics, with the potential to alter the medical landscape for cancer treatments. That is simply incredible!
Summer's here! The best toys for the summer are mostly ones that squirt water, hold water, splash water, or anything water. We got this Step 2 WaterWheel Play Table for Christmas last year and we're excited to finally have it out for the summer. A few other versions of this water table include the Sand and Water Transportation Station and Arctic Splash Water Table. There are many more choices on amazon.com but we liked this one because of the simple design and the fun waterwheel. It comes with a 2 boats, a cup and a waterwheel tower.
I like that the table elevated and at a perfect height for my 19-month old to play comfortably. Not only does he have fun playing with water, he also gets to practice standing. Sometimes I notice that he does not hold on or lean on the table for support for a few seconds! It's also sturdy enough for Matthew to pull up on and lean on, yet light enough for me to lift (without water in it of course). Matthew's too little to pour water into the bucket above the waterwheel right now but he can manually spin the wheel and watch it go. I'm sure he'll have fun pouring water into it when he's tall enough to reach the top of the water tower. The table is big enough to accommodate 2 or 3 toddler friends. Anyone want to come and play? Be prepared to get splashed though!
I do wish the table had a plug at the bottom of the basin to make it easier to drain the water. But I suppose it's light enough anyway that it's just as easy and quicker to pour the water out.
Overall, I think this is a great deal for what we paid. I have also used this for snow in the winter. I set it up in our kitchen. Matthew wasn't interested in the snow but our indoor cat, Yuri, sure had a ball! The table is great for kids and pets!
In the photo below: Father and son love water. Matthew is having fun at his water table while Daddy cleans his scuba diving gear.
Approximate retail price as of today: $29.32
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.
So here's an interesting fact that I learned today: the adenoid, once surgically removed, CAN grow back in some cases. Tonsils don't grow back when surgically removed. We had an appointment with Matthew's new ENT (Ear, Nose, & Throat) doctor today.
Checking Ear Tubes and Tonsils Bill took the day off work so he could come to the appointment and help hold Matthew down when the doctor checked his ears. I was holding his legs down, Bill was holding his arms down and a nurse was holding Matthew's head in place while the doctor scooped out wax from his left ear. Needless to say, Matthew was very upset about being restrained. Upon inspection under the microscope, the doctor discovered that the ear tube in the left ear had already fallen out so that was scooped out too. There is now a hole in Matthew's eardrum where the tube was set. It may or may not heal on its own but the doctor said that hole will help with drainage and function as if the ear tube was still there. So at the moment, the ear tube does not need to be replaced.
After checking the ears, the doctor checked his tonsils. Yup, they are indeed large. We told him that Matthew snores too. Sometimes, we sometimes hear him gasp for air (sounds like it) over the baby monitor. And when he was younger, he used to wake up in the middle of the night, coughing and congested, but not sick. He'd just have a hard time breathing because of the congestion, yet he did not have a cold. Could he have developed allergies? The doctor explained that it's not usually the case for kids in his age range. Bouts of congestion like that are usually viral-related, he said.
Possible Solution to Breathing Issue - Surgery? He suggested that a sleep study was an available option for us if we were very worried about Matthew's breathing at night. Possible apnea? At the same time, he advised us that kids Matthew's age usually yank off the wires that they would attach to his body from the apnea monitor. We won't get accurate results, if any, that way. So maybe watching him sleep at home might be better to see if there are any lapses in his breathing.
Because of his occasional breathing issues and large tonsils, Matthew is a candidate for tonsilectomy (surgical removal of tonsils). And because 50% of the time, removing the tonsils isn't enough to clear the airway for kids with Down syndrome, he would need to remove part of the adenoid at the same time. The procedure starts after 45 minutes of being under anesthesia. The surgery is done through the mouth. If we opt for surgery in the next few months, he will need to stay overnight at the hospital after surgery for monitoring since he is under 4 years of age. Throat pain usually lasts 1 to 2 weeks after surgery. We are to expect having a hard time getting Matthew to drink during the recovery period. And no travelling while he is recovering.
According to our ENT, (approx.) 90% of kids without Down syndrome, who undergo this type of surgery, do not experience any recurrence of their breathing issue. But for (approx.) 40%-50% of kids with Down syndrome who undergo this type of surgery, another breathing issue may surface, possibly caused by other factors. (unknown to us at this time. We can't tell what Matthew's future is going to be).
The decision for surgery, even if it is a relatively simple one, is not easy for us. It's still surgery no matter how minor. We're going to bide our time and see how he does over the summer. Maybe we'll even wait until he's 4 years old. In the meantime, we'll continue with our nightly routine of warm baths in a steamed-up bathroom, saline solution and using a bulb to clear his nose, and a cool mist humidifier in his room at night. We'll see this ENT doctor again for a follow-up visit in approximately six months. We liked how he answered our questions and provided possible courses of action. We also noticed that whenever he said "normal children", he immediately corrected himself saying, "children without Down syndrome" and then finishes his sentence. Hey, at least he's trying to be sensitive about his choice of words.
Bill and I are now wondering about experiences of other parents who have opted for this type of surgery for their kids, with or without Down syndrome. Also, we are wondering if there are older kids/ adults that have not had their tonsils and/or adenoid removed. Do they or their parents wish they opted for surgery earlier or maybe even regret it?
The other side of the table has a variety of interactive toys including a train on the circular track, which goes round and round when activated with the lever on the table, a rotary phone, shape sorter, a small flipbook, a clock, and a button to press for train sounds. Matthew hasn't quite figured out the lever for the train track yet. Or maybe he does know how the lever works and is just more interested in just moving the track manually. In any case, this table keeps him entertained for several minutes a day everyday. Today, he was very interested in the phone, putting it up to his ear all the time.
