Sunday, July 31, 2011Was Matthew Ever A Runner?

I was asked this question last week. Matthew is an escape artist. He doesn't take off running 100% of the time but the times he did were enough to make me think of ways to help him stay where he's supposed to or at the very least, slow him down. When Matthew was just over 3 years old, I took him for an echocardiogram to check on the murmur (trivial amount of tricuspid regurgitation) as a baby. It was also required pre-op procedure for his tonsillectomy, adenoidectomy, and bilateral myringotomy (ear tubes) back in October 2010. The waiting area was just off of a maze-like hospital hallway. Matthew decided to explore so I trailed him. He started out walking a few steps and then ran. I called out, "Matthew! Turn around and come back this way." He stopped for a second, looked at me over his shoulder, gave me the "catch-me-if-you-can" smile, and then took off running and laughing down the hallway and turning a corner or two. Another time, we were at the pediatrician's office. The waiting area was not enclosed and it felt more like being in an open mall. Elizabeth was seated and buckled into the sit 'n stand stroller. Matthew was seated, facing me, on the little seat in the "stand" part of the stroller. There was no way to buckle him. I turned away from the stroller to hand Matthew's insurance card to the receptionist. Then I looked back at the stroller. Matthew was gone! I had only taken my eyes off of him for a few seconds. My heart skipped a few beats as I was frozen in place as I scanned the area. He was already more than 25 feet away from me, climbing on a chair in the waiting area of another doctor's office. A much scarier instance of him taking off happened just a month ago. I was carrying Elizabeth, the diaper bag and had to push a heavy door open, so I had to let go of his hand momentarily. The door opened into a sidewalk but it didn't take much time for Matthew to dash into the street, which is usually busy. That took a few years off my life. Luckily, there weren't any cars at that time. He also thinks it's hilarious to run on our driveway and head toward the street. I've learned to anticipate it and head him off before he builds any momentum. Otherwise, I just avoid being in that situation unless I had a good way to contain Elizabeth so she can be safe while I run after her big bro. What I've Learned To Do Redirect when possible. Last week, we were leaving one of his therapy sessions. On the way to the front door, there was a dance room lined with mirrors. The door was open. He decided that running full speed in the dance room while watching himself was more fun than going to the car to go home. I couldn't chase him down because I had the diaper bag on my back, Elizabeth with her baby doll in my one arm and a small lunch box in my other hand. Elizabeth was refusing to be set down and I did not have a stroller with me. After a few laps, I finally got a hold of him and quickly redirected him toward the door, telling him to wave and say "bye everyone" even when there was no one directly in sight. Having him do something else that he perceived as fun (ie saying "bye" and waving" helped stop the running. It

(thankfully!) worked all the way to the front door and to the car. When at the car, I tell him to touch our car or tap on it or knock on the door, especially if I'm carrying Elizabeth in my other arm. It keeps him preoccupied long enough for me to unlock the doors - I have to stick the key into the lock to unlock it. Then I have him climb in first. Once he's in, I walk around to the other side to put Elizabeth in her car seat and buckle her in. Then I walk back to Matthew's side to buckle him in. Holding hands has been the most effective way to keep him near me, especially in the parking lot, stores, etc. It took a lot of practice for him and persistence on my part. Of course, it's harder when I have to carry Elizabeth with my other arm. Whenever possible, I find something that would contain either one or both kids. I have both of them in a shopping cart at a store. Or Elizabeth is in an umbrella stroller with Matthew helping me push so then, he is between me and the umbrella stroller or at least right next to me. He loves helping me with the umbrella stroller.

I have not resorted to using a safety strap or harness like this one (photo from [Link]). Maybe I will someday. Maybe I should get one just as a back-up tool. Another thing I'm trying to teach Matthew is to ask permission to go somewhere and not just take off. It's a work in progress though and I don't feel like I've gotten through on the "how to ask permission" lesson with him yet. That might sink in when he's older. More Ideas & Suggestions? I'm sure many moms with kids who elope have their own tried and tested strategies. If you have ideas or suggestions, we would love to hear them. Please consider commenting. Thanks!

Saturday, July 30, 2011Post-Orchiopexy and Inguinal Hernia Repair

Bill and I cringe everytime we look at the incisions and stitches but so far, it hasn't been enough to bring on a fainting spell. It just looks like it would hurt to be even moving around. But just a day after his most recent surgical procedure, our little trooper seemed like his usual self. The pediatric urologist was right about how it would be hard to keep Matthew from unallowed activities post-surgery such as climbing, running, and other vigorous activities. From his experience, he observed kids with Down syndrome to bounce back almost instantly. Matthew does have a relatively high tolerance for pain. It was in October 2010 (last year) at his pediatrician's office when we first learned he might need to have surgery. A visit to a highly recommended pediatric urologist in December confirmed it. We were able to push it off until this summer. We were told that it was important to get it done but not urgent. July 27, 2011 was the day of surgery - an orchiopexy and inguinal hernia repair (also closing the inguinal canal to prevent a potentially bigger problem down the road). On the same day last year, Matthew had a sedated ABR (hearing test). In October 2010, he had a tonsillectomy, adenoidectomy, and his second set of ear tubes. We hope he won't need more surgical procedures or other procedures that require anesthesia for a l-o-n-g time. We hid all the riding toys in the unfinished side of our basement. We encouraged him to sit and listen to music, play on his vReader, mobigo, and on my iPhone. We encouraged drawing, play-doh, and other fine motor activities. But as hard as we tried, it seemed that he couldn't bear to miss a day of rough-housing with his little sister and annoying the cat - climbing up and down the living room chairs, in and out of the ball pool, running after the cat, and tickling Elizabeth. The Day of Surgery Matthew and I were at the hospital by 6:30am. Bill and Elizabeth stayed home. Surgery was at 8:30am. He was out of surgery by 9:45am. While recovering in the hospital, a few hours after surgery, he was in good spirits as long as I offered him a bottomless supply of apple juice and graham crackers. We were discharged at 1:45pm on the same day. The caudal block, which is a regional anesthesia injected into the end of the spinal canal and administered in addition to general anesthesia, proved to be a very effective pain reliever for Matthew. He didn't need the tylenol with codeine until 8pm that evening. Step Back in Potty Training Potty training has taken a back seat and we have him in pull-ups all day instead of big boy underwear. We also figured that the pull-up would help keep the lower incision site dry. The discomfort in *that* area is making him go in the toilet more challenging than it was as he fusses more about using the toilet than he used to. Despite the

resistance, he still has many successes at holding and keeping his pull-up dry. However, he finds it more comfortable to poop in the pull-up. We'll get back into it when the incisions have healed and the bruising is gone.

Saturday, September 18, 2010

Just Take a Lick
You can lead a horse to water but you can't make it drink. We can lead Matthew to food but we can't make him eat. Transitioning Matthew from baby food to solid food has been one of our biggest challenges. It's an extremely frustrating process. He eats a decent variety of textures (crispy, crunchy, hard, lumpy, and smooth) but has a very limited selection of food. His diet consists of yogurt, applesauce, regular cheerios, goldfish crackers, wheat thins, pretzel twists, toaster waffles, apples, peaches, pears, canned oranges, and just in the past month, pasta (shells and elbow macaroni). He gets meats and vegetables from jarred 3rd stage baby food. New and unfamiliar food is typically met with him shaking his head, saying doh! da! da!(no! done! done!), crying and turning away from the food. Sometimes, he gets so obstinate and mad that he'll try to clear the table with his arm in one swift sweeping motion. (Let's refer to this behavior as "Mr. Hyde.") He gets a 2-minute time out for that. This is a frequent occurrence at our dinner table, as frequent as we offer new food to him. So sometimes we opt not to offer new food to avoid this food battle. Perplexing Behavior Sometimes Matthew reacts the same way to favorite or familiar food as he does to new food. It's a phenomenon that we do not fully understand. If we offer peas and carrots in a plate, Matthew turns into Mr. Hyde. But when I sneak the peas and carrots into his jarred 3rd stage baby food, he doesn't even flinch. If we offer pasta with cheese sauce, Mr. Hyde comes to the dinner table. When we start singing, sometimes Matthew returns and eats. Sometimes Matthew will ask for an apple. We always cut it into potato-wedge sized pieces. Once we put it on a plate and set it in front of him, Mr. Hyde shows up! We give him a minute to get over the mood and sometimes he'll start eating on his own. Or sometimes giving him a fork helps. The newly introduced idea of using a fork for the apple is enough to distract him into eating. We're not lucky enough to have that happen all the time though.

Where Did We Go Wrong? It's been over a year now that we've been trying to transition to solids, seeing that I wrote "Transitioning from Baby Food to Solid Food" in July 2009. On the bright side, we've had some progress during the year - just not the quantum leap we had envisioned. We can't pinpoint exactly how he developed a strong aversion to food but we have a few theories. Maybe we didn't introduce solids early enough. His inability to chew food when he was younger due to the hypotonia made me hesitant to try. Maybe we didn't offer a wide variety early enough so he has limited exposure to different tastes and types of food. Maybe he developed the aversion from the numerous times that he gagged and threw up the solids that he did try, associating a negative experience with solids or new food. These gagging episodes also made us gun-shy about pushing solids. Maybe we didn't do oral stimulation activities often enough. Maybe he's just plain picky. After all, he is a toddler. Most toddlers are picky. Bill and I are picky to some extent too. It's in his genetic make-up! At this point, the reason didn't matter as much as the next course of action. He's proven to us that he can chew his food, although he still gags on the smaller bits that are too small for his mouth muscles to detect and chew yet too big to swallow without chewing. He has a psychological barrier to accepting more types of food. We need to get past it. Exposure and Interaction Thanks to some guidance and ideas from Matthew's occupational therapist and speech therapist, we have a new plan of action in place: - frequent exposure to new food. - branch out to new food using the guidelines in the book "Food Chaining: The Proven 6-step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child's Diet" by Fraker, Fishbein, Cox and Walbert. - use a continuum to have Matthew interact with new food, which means having the

new food on his plate, touching the food, kissing the food, licking the food, holding between his teeth and ultimately putting it in his mouth, chewing and swallowing. We've had some success with the new plan and an equal amount of unsuccessful attempts. Success Story #1 - Mac 'N Cheese In introducing the homemade mac 'n cheese, we convinced Matthew to feed Bill. Next, we showed him to kiss it first before feeding it to Bill. Then when he was getting comfortable kissing the pasta, we moved on to licking it before feeding it to Bill. Being the wonderful dad that he is, Bill ate the pre-moistened pasta for the sake of getting Matthew to accept being at the same table as the pasta. It was for the greater good! And I showed him how I put my pasta in my mouth. And with a little bit of hand-over-hand guidance, Matthew put a piece of pasta in his mouth and started chewing! He ate his whole bowl of mac 'n cheese after we got the first piece in. Success Story #2 - Porkloin I had Matthew feed me a slice of pork for lunch. He was interested in how I'd have a big chunk on the fork and only bite pieces off. I walked away from the table and when I returned, he had my fork and pork and was licking the pork on the fork and giggling. Then on his own terms, he took a bite and started chewing. He must have bitten too big a piece though because he spit some out. He was definitely chewing though! Then he was done.

Success Story #3 - Ice Cream He had a spoonful of ice cream on his 1st birthday. He has never had it since then, always refusing to try ice cream. He recently took 10 licks of ice cream using a miniature ice cream cone. Just the fact that he licked the ice cream is enough to call this a success.

Tracking Method Using a monthly calendar to keep track of when and what new food we introduce has helped. Some days we feel like we've been exposing Matthew to bread for a month without any success. But when we look at the food tracker calendar, we see it's only been 10 days. We also note if he interacts with the food at all (touch, kiss or lick) and how many times. Pressured and Stressed? Maybe Matthew feels pressured to try new food. Maybe most of our attempts to transition him to solid food simply causes stress and summons Mr. Hyde to the table. There were a few things he started eating that weren't introduced at the dinner table such as waffles, wheat thins and pretzels. Maybe we just need to back-off. But not completely especially since it seems we are making some progress with the expose-and-interact strategy. We'll back off from "Just take a bite" to "Just take a lick." Or maybe our new plan won't work either and we'll be wondering, once again, what else there is to try. Related post: Transitioning from Baby Food to Solid Food

Monday, August 9, 2010

TV Time
I never thought that I would ever set the classical music channel, which is available on our cable subscription, as a favorite TV channel. It plays classical music all day long with just a picture of classical musical instruments and/or the artist on the screen. I did this out of necessity. I needed to prevent Matthew, my little TV and DVD addict, from being sucked in and mesmerized with TV. He knows which button to push to turn on the tv but he doesn't know how to change the channels (yet). I used to put in Baby Signing Time for him every other day or so. He loved it but he wasn't addicted to it. He was learning the signs from watching it and from me teaching him hand over hand. He'd watch one DVD and was ok with me turning it off when it was done. He was getting 30 minutes of TV time per day on average. The downward spiral accelerated when I let him watch more DVDs when I was pregnant with Elizabeth. I'm guilty of using the TV as a babysitter. The fatigue and discomfort from the pregnancy was my lame excuse. I wasn't spending as much play time with him as I wanted to. I'd let him watch a DVD twice in a row and then sometimes switch to another DVD. What harm could they do? After all, they were educational and he was learning to say words like "ball" and "dump truck". At this point, he was getting 2 to 2-1/2 hours of TV time per day on average. Generally, I'm not opposed to watching TV. I like watching TV. But when I see my little boy memorizing the DVDs and tuning out the world around him whether the TV was on or off, I knew it had to stop. He would find a DVD, bring it to me and giggle, which meant he wanted to watch it. It was cute in the beginning until the crying fits started and got worse whenever I tried to redirect him to other activities. I even resorted to hiding all the DVDs we had but he just found the TV remote and brought that to me. He eventually found my DVD hiding spot. He did not want to do anything else. His mind was hooked on his favorite shows and I could see him replaying the shows in his head, evidenced by him mentally "checking out" for several seconds at a time. In this state, he wouldn't hear me if I said something. His ability to play independently and somewhat creatively with his toys diminished during this time. The other thing that made me sad was the fact that I was the go-to person for TV and DVDs. I didn't want to be that person. He would never ask Bill or my mom, when she was here, for tv time. Three months ago, we cut him off cold turkey. With Bill's intervention, we were able to redirect him to other things like playing with toys or playing outside. It wasn't easy. I had to learn to ignore his requests for TV time and be more persistent about playing with toys than he was about his DVDs. I had to ignore his pouts and crying fits. Over the 2 to 3-week "detox" period, I noticed he was asking for DVDs less and less. He

was more agreeable to being redirected to toys. He was more alert and playing more independently. He wasn't "checking out" as much. It was a very nice change to see. These days, Matthew will ocassionally turn on the TV. But with it set to the classical music channel, it doesn't hold his interest long at all. He easily moves on to playing with his toys. He'll bring me a DVD sometimes. I simply acknowledge it and promptly redirect him to a toy or game for us to play, then I discreetly put the DVD away. Other kids might have been fine with some TV time but since it was adversely affecting Matthew, it was best to do away with all TV time. The DVDs will have to gather dust until he is ready to handle TV again or until we can't regulate it anymore. I also have to pass on Early Reading Programs that come with DVDs, at least for now. The classical music channel is a good temporary fix. If needed, I'll have to think of something else when Matthew learns to switch channels. I wonder how many other parents are dealing with this issue, if there are any at all, and what they are doing about it.

Friday, September 4, 2009

Book Review: I Can, Can You?

Written & photographed by Marjorie W. Pitzer. A board book for babies and toddlers to enjoy. The photos are of kids with Down syndrome playing, eating, drawing, and sharing. What a simple reminder that kids are kids, Down syndrome or not! Matthew's favorite pages seem to be the one with the little boy going down the slide and the little boy swimming. He always stops at this particular page and starts babbling. It makes me smile and wonder what goes on in his head when he sees these photos and I wish I knew what he is trying to tell me.

Friday, July 17, 2009

Book Review: The Very Hungry Caterpillar

Written by Eric Carl, this is a cute book about one very hungry caterpillar. This is one of the few books we borrowed at our local library that helps kids work on a specific fine motor skill - POKING. The story progresses with the caterpillar eating through all kinds of food, leaving holes which are the perfect size for toddlers to poke their little fingers through. I used this to encourage poking and pointing with the index finger instead of the thumb. Matthew had a tendency of pointing or poking with his thumb, which is apparently common among kids with Down syndrome. Of course, there are other ways to teach poking with the index finger and eventually isolating it. But since Matthew generally likes books, why not hit two birds with one stone?

Monday, June 7, 2010

Matthew's 1st Visit to the Dentist
We spent months contemplating when to take Matthew to the dentist. My dentist had given me a brochure with information that a child should first be seen by a dentist as soon as the first tooth erupts. Matthew's first tooth sprouted when he was 7 months old. Other dentists suggest that kids should be seen when they are 2, 3 or 4 years old, sooner if needed. I looked up pediatric dentists near our area and asked friends for recommendations. I also looked through a list of pediatric dentists recommended by other parents in our local Down Syndrome Association (DSA). The list, which is available at the DSA, is a wonderful resource based on recommendations from other parents who have kids with Down syndrome. It was put together to help other parents like me find doctors who have a keener understanding of Down syndrome in relation to their specialties because they have patients with Down syndrome. Chronological Eruption of Teeth Some studies cited in an article on the ds-health website report that individuals with Down syndrome tend to get teeth later than usual and in an unusual order. Apparently, the delay can be as long as two to three years. Matthew is 2-1/2 years old. He had a full set of primary teeth by the time he was a little over 2. I chronologically charted the order in which his teeth erupted except for his second molars. He has them but I wasn't exactly sure when they appeared so I never noted the dates. According to primary teeth eruption charts at MedicineNet and All Day All Night Dental, Matthew's teeth appeared in the usual pattern of primary tooth eruption within the usual timeframes, except for his upper lateral incisors. I read somewhere that it isn't uncommon for some kids to teethe out of the usual order, whether they have Down syndrome or not.

Upper Teeth Central Incisor (8-12 months) - Matthew (11 months) Lateral Incisor (9-13 months) - Matthew (15 & 17 months) Cuspid (16-22 months) - Matthew (18 months) First Molar (13-19 months) - Matthew (14 & 15 months) Second Molar (25-33 months) - Matthew (approximately 27 months?) Lower Teeth Second Molar (23-31 months) - Matthew (approximately 27 months?) First Molar (14-18 months) - Matthew (16 months) Cuspid (17-23 months) - Matthew (17 months) Lateral Incisor (10-16 months) - Matthew (14 months) Central Incisor (6-10 months) - Matthew (7 months) Common Concerns We decided it was time for him to see a dentist to check for cavities and plaque buildup. We knew he didn't have any missing primary teeth so that wasn't a concern for us. We scheduled an appointment with a lady pediatric dentist and Bill took him to his first dental appointment a couple of weeks ago. The Dentist's Report The dentist was able to get a fairly good look in Matthew's mouth when he was pinned down and screaming. The good news is Matthew doesn't have cavities. He has a little bit of build-up though. His tooth alignment is decent with some spacing between his teeth, which just means he has room in his mouth to accommodate the bigger permanent teeth later on. There was no mention of when he will need to be xrayed. We're guessing it'll be done when he can cooperate willingly during the dental exam and doesn't need to be held down for it. He'll be seeing the dentist again in 6 months.

Wednesday, December 16, 2009

Kindermusik
Sadly, today was the last day of Kindermusik for the semester, September to December. We're going to miss it next semester as we won't be re-enrolling with baby #2 on the way. I will continue to play the Kindermusik CD's at home though because Matthew enjoys the music so much and has very good memories of the activities done in class. As a Christmas and thank you gift, we gave his teacher a copy Gifts 2(the perfect Christmas gift!) autographed by my sister-in-law, Kristin, who wrote the essay about Matthew on page 240. When we first started, Matthew liked watching the other kids but didn't necessarily interact with them. He listened to the music but didn't do the actions (clap hands, stomp feet, wiggle, etc) that the teacher was showing the kids unless he allowed me to do them hand-over-hand with him. He may not have been participating as actively as the other kids but he wasn't crying or fussing about being in the class. I took that as a good sign - that he just needed time to take everything in. Repetition is key to learning for most kids. Repetition and frequency is even more important for Matthew and for most, if not all, kids who have Down syndrome. When he was more familiar with an activity, his participation level increased. So we listened to his Kindermusik CDs at home often, repeating the actions being taught in class. As the semester progressed, his teacher and I noticed that Matthew was participating more and walking up to the other kids sometimes to touch their arm - his way of interacting with them. He was transferring certain skills learned from me and from his therapy sessions by following the teacher's directions without any prompting from me. This showed me how much he was maturing, how much he was processing in his mind and able to translate his thoughts into actions independently. The class provided a relaxed setting for Matthew and I to bond through music and movement, give him the opportunity to interact with other kids close to his age, and learn to express himself through movements associated with the songs. Kindermusik has proven to be very beneficial to Matthew's social, emotional, and cognitive development. I'm so glad that we had the opportunity to be in the class.

Monday, June 8, 2009

Kindermusik Summer Program
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-crazysometimes-heaven-sent-biter-smarter-than-he-lets-on-wonderful-wouldn't change him for the world-blessing little boy.

Thursday, March 31, 2011

Bubble Therapy

Bubbles have fascinated Matthew since he was about 9 months old. It wasn't until he was 2-1/2 years old when he could blow bubbles on his own. It's an enjoyable lip rounding activity. He loves bubbles so much that it is a powerful motivator to get him through non-preferred gross motor activities.

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

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

Related post: Toy Review Tuesday: Bubbles

Sunday, October 24, 2010

Flashcards With Sounds

Like most kids with Down syndrome, Matthew is a visual learner, meaning he learns best by seeing. In some ways, he is also a kinesthetic learner, meaning he learns by doing. We trying to increase his auditory processing skills too so he can learn better by listening or hearing. I usually tailor my activities to match his learning style. Here's a video of one of my improvisations. I found a free app for the iPhone called "I Hear Ewe". It has recorded real-life sounds of farm animals, wild animals and modes of transportation. I use it to bring pictures to life by showing Matthew a flashcard of the animal as I tap on my iPhone for the sound. Matthew enjoys it. And when he's enjoying an activity, he's learning!

Saturday, September 18, 2010

Matthew's List of iPhone Apps
I love technology. Matthew does too. He likes my laptop and my iPhone. I've downloaded several iPhone apps for him. ABA Flash cards (free) by [Link] - Actions, Alphabet, Zoo Animals, Fruit & Nuts, Emotions Real life pictures with the word for the picture on top. Voice audio says the word clearly. It can be turned off. Pictures can be ordered alphabetically or shuffled. Balloonimals Blow up balloons by blowing into the talking end of the iPhone. Shake the iPhone to create different animals with the balloons. Echo A game that's great for auditory and visual memory. A sequence of buttons flash on the screen. The challenge is to repeat the sequence in order with a new flash added to the sequence when successful. The goal is to match as many buttons in a row. iPlay 'n Learn Flashcards with letters, colors and shapes. Nice educational app but I think the voice is too fast for Matthew to follow. I'm also not impressed with the letter tracing feature on this app. It's not very easy to follow. I prefer iWrite Words for tracing letters. iTouch iLearn Words Features a match-the-word game and matching a picture to the word on the screen. Matthew isn't developmentally ready for this app yet. iWrite Words Letter-tracing educational app with easy-to-follow tracing guide. Learn Sight Words ($0.99) 300 of the most frequently used words in the English language. I think this is the dolch list. Blue letters on white background. Learn to Talk Flashcards featuring high impact words, objects and labels, one word actions, two word actions. Tapping the word on the card spells it if spelling is enabled. Tapping the letter on the card flips it over to show the uppercase and lowercase form with audio of the letter, but not how the letter sounds. Model Me Going Places (free) Picture slideshows for modeling social skills. Limited to hairdresser, mall, doctor, playground, grocery store and restaurant. Talking Tom (free) A cat that repeats whatever is said to him.

TapToTalk A tool for non-verbal kids to communicate. I have it on my iPhone but I haven't tried it with Matthew. Virtuoso Fun freeplay on the interactive piano. Voice Toddler Cards the talking flashcards ($.99) Real life pictures with words underneath. Flashcards of letters, numbers, food, animals, objects). Own voice can be recorded for the picture or a default is also available in English or Spanish. Flashcards can be set to autoforward or manual tapping on the screen. Wheels on the Bus Poke or slide things on the screen for surprise actions. Own voice can be recorded singing the song. More iPhone Apps Here's a list of educational iPhone apps I've seen or heard of but haven't downloaded: Baby's Animal Show iTot cards Pocket Phonics Wh Questions Which Doesn't Belong Which Goes Together

Wednesday, September 1, 2010

Matthew Can Sight Read
While working on matching sight word cards with Matthew the other day, I decided to try (to test) and see if he would recognize the word if I didn't show him the picture. I showed him the word "Daddy" - no picture so there was no other visual cue other than the written word - and he said "dee", which is his verbal approximation for Daddy. He recognized the word! He was sight reading! I was very excited about his new skill. He is about a month away from his 3rd birthday and he can sight read. He learned this through using homemade materials only. I videotaped him after discovering his latest skill. When Did We Start? What Did We Use? Homemade Sight Word Cards It was in April 2010 that we had started working on matching my homemade sight word cards, which I wrote about in my previous posts Book Review: Teaching Reading to Children with Down Syndrome and Speech and Reading Connection. This wasn't anything I included in our Early Intervention program goals. I decided to pursue this myself. I wanted him to: - to learn to recognize letters of the alphabet. - to pay attention to words. Prior to this, he was only interested in the picture if I showed him the picture and word on a single page. - to eventually make the association between words and the things they represent.

At that time, Matthew had the skills to identify, differentiate, match and label objects and pictures so I decided it was a good time to start learning some sight words, which is a whole-word approach to reading. Being a visual learner, Matthew sees the word like he would an image and associates it with an object or action via what he has previously stored to memory.

Picture Cards I had also used another set of picture cards that I made for him in late 2009. The picture was printed on one side and the word was on the other. We originally used these for pointing, identifying and labeling the pictures so we'd look at the picture only. When we started with learning sight words, I'd show him the word first just to draw his attention to the word and then flip it over to show him what the word represented.

Word Cards These are simply cards with a word. I put some on our fridge next to his fridge toys using magnetic tape and labeled toy boxes using adhesive velcro. I also used them for matching with the picture/sight word cards that have the picture and word on the same side.

Homemade Videos In addition to the picture cards and word cards, I also created a couple of alphabet videos which I shared on a previous post "Alphabet Home Videos". How Did We Do It?

We worked on labeling, identifying and matching first as suggested in the book "Teaching Reading to Children with Down Syndrome." Laying the picture card with the word on the same side in front of him I'd say, "Here's a picture of Daddy." Then pointing to the word card, I'd say "This word says Daddy. Let's put 'Daddy'(the word) on Daddy (the photo card). Yay! Good job!" We did this repeatedly for maybe a minute each time several times a day, depending on his interest level. I didn't push it if he wasn't in the mood for playing this matching game. I introduced the other sight words when I saw that he was matching words successfully with less prompting from me. Another game we played with the word cards is what I like to call "peek-a-word". This was literally holding the word card behind our little whiteboard so that it is out of sight and then making it pop up randomly around the whiteboard. I'd say the word everytime Matthew could see it. If I made the word "milk" run across the top of the

whiteboard, I'd say "milk, milk, milk, milk, milk" animatedly until it disappeared behind the whiteboard. Matthew thought this was pretty funny. What's next? It would be interesting to see if Matthew would recognize the words that he does now if they were written differently. For example, if the letter 'a' in the word 'Daddy' was written in a different font/style, would that throw him off? More words, here we come! Maybe we'll try short sentences such as "I see ____" or "I want ____" and create a little book. Other Resources What works for us may not work for others. Some have better luck with pre-made programs such as the ones I've listed in Early Reading Programs. Sight word lists to check out include: Fry Words Dolch Words (220 most common words in English) 100 most common words in English I'm sure there are more resources and ideas available for teaching reading that I am not aware of. Please feel free to share in the comments section.

Saturday, April 16, 2011

TalkTools Straw #2
We used straw #2 of the TalkTools Straw Hierarchy kit from the beginning of March to mid-April this year. Straw #2 is a curvy purple straw. I've seen this straw at Target in the party supply section and at a local party supply shop. So if we lost this straw or it broke, then it would be easy enough to replace. The lip block on the straw is very effective at keeping just 1/4-inch of straw for Matthew to practice a proper lip seal around the straw instead of wrapping his tongue around it and suckling. Two lip blocks came with the TalkTools straw kit but I think they can also be bought individually from TalkTools or possibly from other online stores that sell therapy supplies for oral-motor activities. Between this straw made of a harder plastic than straw #1 and the lip block, (and better supervision from me) Matthew had no opportunity to chew on this straw like he did with straw #1. Either the take 'n toss cup with a straw lid or the sip tip cup generally seems to work. There is little risk of a little spill through the hole in the lid if the cup is tipped at an extreme angle since the straw is loose-fitting through the lid. It's usually not an issue though since I hold the cup and straw for Matthew. The drink of choice: Motts for Tots apple juice. He prefers not to drink water or milk with this straw.

Sunday, May 31, 2009

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.

Saturday, October 23, 2010

Initial IEP Experience and Goals
The night before our first IEP (Individualized Education Program) meeting, I was up late looking through my list of goals for Matthew wondering if they were too high or too low. I used my developmental milestone checklists and books such as 'Gross Motor Skills in Children with Down Syndrome' to help me look 12+ months into the future and get an idea of where Matthew would be (might be) developmentally. I skimmed through a few chapters in 'From Emotions to Advocacy' to cram whatever knowledge I could about writing measurable IEP goals into my tired brain. I wanted the perfect IEP for Matthew's first year in preschool. The IEP is a legally binding document that describes all of special education services Matthew will receive. It includes details of services such as therapies, academic and behavioral goals, percentage of time in the classroom versus time in individual therapy sessions, and progress reports from teachers and therapists. I wanted to ensure Matthew received all the services/therapies he needed, to learn lots and make new friends during his first year in preschool.

The IEP Meeting I walked into the meeting with Matthew's school records binder, my list of goals, a dozen bagels and a smile. The binder had photos of Matthew on the cover to show everyone at the meeting and make it easy to keep in mind the person whom this IEP was for. The dozen bagels were for myself and the people who would be a big part of my son's development for the next 12 months. He'll be in school from 7:45am to 10:45am, Mondays to Thursdays. And I hoped my smile masked my tiredness. The school administrator, teacher, speech therapist (ST) and occupational therapist (OT) at school were at the meeting. Matthew's OT, developmental therapist and service coordinator from the Early Intervention (EI) program were also present. I invited the latter three. The meeting started with a review of Matthew's present levels of academic achievement and functional performance. I loved how the section about his strengths was worded. Matthew is a very bright little boy with a great sense of humor who loves learning and has a great attention span. At this time, he is functioning at age-appropriate levels in

the areas of cognitive development, social-emotional development and gross motor development. His mother reports that he's very visual and pairing objects with pictures or words is very beneficial to him. He learns well having tasks broken down and with lots of repetition. IEP Goals His IEP goals were written based on my concerns in each of the developmental areas, specific to Matthew. After all, it is individualized but out of curiousity, I do wonder how similar or dissimilar they are to others' goals. We have 3 annual goals for gross motor skills. 1. Matthew will propel tricycle 50 feet on level ground including 90 degree turns on 3/4 data days. 2. Matthew will place both feet on 4 inch beam and take 3-5 steps on 3/4 trials for 3 data days. 3. Matthew will go up and down 3-5 multiple steps without hand support (but holding on to rail) on 3-6 inch high steps for 3/4 data days. We have 1 annual goal for self-help skills (adaptive behavior). 1. Matthew will increase his ability to put on/remove loose clothing without assistance for 10 consecutive data days per benchmark. One of the benchmarks/ measurable objectives, just as an example, is: Matthew will put on his jacket and/or backpack with less than 2 physical prompts for assistance for 10 consecutive data days. We have 3 annual goals for speech with several benchmarks for each goal. 1. Matthew will increase overall speech intelligibility by producing age-expected sounds in the initial position of target CV (consonant-vowel), CVC (consonant-vowelconsonant) and CVCV words contained in repeated carrier phrases (my ___, I ___, etc) during structured therapy activities in 8 out of 10 opportunities over 3 consecutive data days. Speech goal #2 is similar except the focus is on VC (vowel-consonant) and VCVC sounds/words. And speech goal #3 is to work on two- and three-syllable words since he currently drops syllables. We have 3 annual goals for language with several benchmarks for each goal (benchmarks not listed in this blog post). 1. Matthew will increase his expressive language skills by independently using 2-4 word utterances to answer target "what' (what doing, what have), "who" and "where" questions regarding a one-sentence story or pictured actions and objects during structured language activities for 8 out of 10 opportunities over 3 consecutive data days. 2. Matthew will increase his expressive and receptive language skills by demonstrating understanding and independently using the following modifiers, descriptive concepts and unit vocabulary words, including but not limited to: in, on, under, over, on top, next to, big, little, tall, short, long, fat, new, old, hot, cold, not/no,

bumpy, hard, soft, happy, sad, mad, night, day, etc by pointing to the appropriate picture when named and by saying the appropriate concept word to describe pictures during structured therapy activities for 8 out of 10 opportunities over 3 consecutive data days. 3. Matthew will increase his receptive language skills by following two-step, unrelated directions during structured therapy tasks for 8 out of 10 opportunities over 3 consecutive data days. We have 2 annual goals for fine motor skills. 1. Matthew will increase fine motor skills by demonstrating independent completion of designated manipulative activities such as using tongs, clipping clothespins, stringing beads 3/4 trials. 2. Matthew will increase fine motor skills by using one hand to manipulate and one hand to stabilize while completing table activities (turning single pages of books, stabilizing paper while marking on it, cutting with scissors) on 3/4 trials. We have 1 annual goal for feeding. 1. Matthew will increase his feeding skills by taking 5 bites of foods, chewing, and swallowing them, from a variety of tastes, textures, and temperatures using appropriate utensils when necessary in 80% of opportunities for 3 consecutive data days. The Perfect IEP The meeting went well. I felt really good about the goals during the meeting. However, in the evening after meeting, self-doubt and questions loomed. Are these goals sufficient? Are they set too low? Is the IEP perfect? Good enough? I finally came to terms with myself and let go of my self-induced stress a few days after the IEP meeting. Perfection is relative. I decided not to stress over what we had on paper. These were good goals. I had heard many glowing reviews about the school's preschool program. This was a good start. Besides, amendments can be made during the year if needed. And what good is a perfect IEP on paper if it's implemented poorly? Matthew was supposed to start school after his birthday but due to the tonsillectomy and adenoidectomy scheduled on October 26, we decided to keep him home and away from possible bad bugs he might pick up at school. Getting sick would potentially postpone his surgery. He'll be going to school as soon as he recovers from the surgery.

Thursday, October 21, 2010

1st Staffing Meeting & New Diagnoses
I was expecting two more evaluations - one with the occupational therapist (OT) and another with the physical therapist (PT) - prior to the staffing meeting at the preschool. The OT and PT said that they had enough information from the progress notes from the Early Intervention program and my notes in the Developmental Achievement Chart, which I had prepared and updated. So they didn't see a need to put Matthew through more evaluations. That was nice. The staffing meeting was held on September 29 with the program coordinator, the school psychologist and speech-language diagnostician. The purpose of the staffing meeting was to go over the results of the evaluations that Matthew did have and from there, determine what services he qualified for and how he qualified. It took a little over an hour to go through everything. He scored the highest in the Social-Emotional subtest of the DAYC (Developmental Assessment of Young Children). His second highest score was in the Cognitive subtest of the DAYC. Based on the scores in those two areas, he didn't qualify for services. Hearing that he didn't qualify for services actually made me happy. It was reassuring to me that he was doing well, according to a standardized test. Diagnosis: Speech Impaired - Sound System Disorder His lowest scores were in the areas of speech and language. Based on the results of the speech and language evaluation, he was given a secondary diagnosis of "Speech Impaired - Sound System Disorder." It means a communication disorder that includes articulation and/or phonology errors. He drops consonants in his speech, drops syllables, has age appropriate letter/speech substitutions as well as irregular substitutions. Diagnosis: Young Child with a Developmental Delay Matthew was determined to be a "Young Child with a Developmental Delay" based on the prior evaluations and interviews with me. He qualified for services because of delays in speech, language and Adaptive Behavior (self-help skills). He also qualified for occupational therapy and physical therapy.

Tuesday, August 31, 2010

Toy Review Tuesday: Play Food
The obvious purpose of play food is to encourage pretend play. And pretend play encourages expressive language. Tea parties, play kitchens, grocery shopping and picnics are just a few games/ activities with play food. Matthew and I like picnics. Elizabeth joins us if she's up. We feed dog, give teddy a drink and wipe their mouths because they are oh-so-messy.

Matthew can also practice using a spoon at our picnic. Sometimes, when I'm lucky, I can even include real food in our game. Matthew has a strong aversion to any new food and this is one way for new food exposure. His speech therapist has been successful with giving him whale cheese crackers through food play. He had never had whale crackers before. Unfortunately, I can't introduce messy food like spaghetti at our indoor picnic. I think he won't tolerate it anyway and will probably end the game and walk away if I did that.

More Ways To Use Play Food We like play food pieces that are held together with velcro. The smaller pieces that are easy for little hands to grip work well as a hand strengthening tool. It sounds easy but it wasn't when Matthew was a little over a year old. The low muscle tone

(hypotonia) made it hard for Matthew to pull the velcro food apart. He can easily pull the velcro food apart now but we continue to work on hand strengthen with other activities. Cutting some of the velcro food in half with the play knife is a good way to teach Matthew to use both hands in a more refined manner. It takes a lot of coordination and concentration to hold on to the food with one hand and using a knife to cut with the other. This is a work in progress.

In a few years, I see us grouping play food by category. Do you have more ideas for using play food? Please feel free to share them here.