Book Review: Fine Motor Skills for Children with Down Syndrome

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

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

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

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

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

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

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

Overall, a very useful book.

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

Potty Time! (Struggles and a Solution)

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

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

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

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

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

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

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

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

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



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

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

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

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

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

Ok, POTTY TIME!!

Terrible 2's or 3's?

The 3-year old is like a 2-year old on steroids - testing boundaries and the limits of my patience (or lack thereof). But perhaps what we're experiencing is the peak of the typical terrible 2's. Perhaps the delay in his emotional development has delayed the onset of full-blown terrible 2 mode even if he is 3. And historically, Matthew lingers in a developmental phase or milestone or stage for a little longer than his typical peer. That being said, we enjoy the successes longer but we also muddle through the struggles longer.

Some say 3 is a fun age. I say parenting 3-year old Matthew makes parenting 2-year old Matthew seem like a semi-relaxing walk in the park. At age 2, Matthew certainly had his fair share of tantrums - refusing to follow directions, dropping to the ground and slipping back down between my arms whenever I tried to pick him up, throwing food on the floor, the list goes on.

With his hands behind his back, Matthew casually walks between Bill and I. He leaves a short trail of crayons behind him, discriminately dropping them behind him. Then he looks at us so innocently, as if thinking, "They're not going to notice. Nothing to see here." We find that he runs experiments like this sometimes, testing what he can get away with. This particular experiment failed as we asked him to pick up his crayons and put them in their box.

Most of the time, he's an angel to his sister. But sometimes the little horns come out. He'll bop Elizabeth on the head or give her a little push or take a toy from her. More experiments - most of which he served a 3-minute time-out or offered Elizabeth a "sowwy" and hug (with prompting).

He calmly sits in a chair or corner for the duration of the time-out but its lesson is lost. To him, there is no connection between quietly sitting alone for 3 minutes as a consequence for shoving his sister. Redirection seems to work better but the timing to redirect him has to be perfect.

We praise him for many good behaviors and actions we would like him to repeat. We try to make sure the positives far outweigh the negatives. It's quite a challenge! "NO" is a common utterance in our house, as it is in the world. We can't and won't shield him from the word "NO." Matthew says "NO" to brushing teeth. I say "NO" to throwing toys down the stairs. Matthew says "NO" to eating. I say "NO" to squeezing the juice box so the contents spill all over the floor. "NO" to pulling the cat's fur or tail. "NO" to taking toys away from Elizabeth. "NO" to pouring milk on the carpet. "NO!"

I hang on by a thread of patience as I sternly tell Matthew "NO!" for deliberately pouring his milk on the floor. A swat on the bottom seems useless as he laughs in my face. He swats my head, not playfully, as I kneel on the floor next to him to clean up the spilled milk. A 3-minute time-out doesn't seem to do much except interrupt mealtime. And I guess it refocuses him enough to stop being ornery for a few minutes. He says "sowwy" when prompted.

And when I'm at the end of my rope wondering when we might "graduate" from this terrible 2 or 3 stage, the little stinker gives me a hug and a kiss.

He is certainly more alike other kids than different. Like other kids, he's going through the stage where he constantly experiments with behaviors and tests boundaries. He's studying our reactions and learning to push our buttons.

One difference is that he may have started this stage a little later than other kids his age. It also takes more repetition for him to learn a series of action-reaction-consequence. The repetition actually makes it hard for me to be consistent with disciplining. There are many variables in play such as the circumstance, my mood, his mood, Elizabeth's mood.

For instance, pouring his milk on the floor at lunch would mean a stern "NO" from me and he would need to help me clean it up with paper towels. With the best set of variables, he and I will clean up the milk with no fuss, no tantrums. But other times, he will throw the paper towel or refuse to clean up the mess or I'd be tired and short-tempered or Elizabeth is fussing and needs her milk or something to eat or help with a toy. Then it gets hard to deal with making Matthew clean up the mess. Sometimes it's easier to just cry over spilled milk and clean it up myself.

So terrible 2's? Terrorizing 3's? Whatever it's called, it's what kids do. And being the determined, little achiever that he is, Matthew certainly does his job very well.

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

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.