Wipe Your Chin Please

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

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

And it's quicker than just telling him verbally.

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

Using Chopsticks

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

We started with green beans.

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

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

Related post:
Toy Review Tuesday: Tongs

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 Training

Sitting on his potty chair for the 10th time today, Matthew was successful with a pee potty. Unfortunately, he wasn't sitting quite right so pee shot out over the front guard of the potty chair and soaked my pants since I was sitting in front of him. But I praised him for going. I applauded his effort. That was more important than my wet pants.

He understands that going in the potty is expected and loves the praise he gets for successfully using the potty. He even clapped for himself as he was peeing. Yes, it's a proud moment for us all.

Readiness signs
We started introducing Matthew to the potty in August last year. He was showing an interest in the toilet, imitating Bill or I in the bathroom. He was willing to sit on his potty chair at bathtime and bedtime.

He knows the sign for potty. He can also verbalize "potty." However, without recognizing the urge to go yet, he doesn't communicate that he wants to or needs to use the potty.

Generally, sensory awareness is low in individuals with Down syndrome. This seems to be true for Matthew as he doesn't seem to sense the urge. He is also indifferent to being wet or having a poopy diaper. So in this regard, perhaps he isn't completely ready but we wanted to start the process anyway because of his interest.

Potty Strategies & Ideas
During the Christmas break, we ramped up our potty training efforts, taking him to the potty (roughly) every hour. He now wears pull-ups during the day, even to school. So he uses the potty at school too even if it wasn't originally in our IEP (Individualized Education Plan). He wears a diaper at naptime and bedtime.

However, with the hourly schedule, we seemed to be missing the window 90% of the time. We were either 3 minutes too late or 3 minutes too early. So last week, we decided to take him to the potty every 30 minutes when he's home and offering water or juice as often as possible. Yes, it's a tedious process but we've learned to incorporate it into our day by keeping an eye on the clock or setting a "potty alarm." It certainly isn't easy when I have 8-month old Elizabeth to tend to as well. But the more practice he gets, the more chances for more successes. Each success is a little baby step to being potty trained.

An idea from another mom is to put Matthew in underwear under the pull-up so he'll feel that he's wet since pull-ups tend to wick moisture away from the skin. I'll try it for the sake of trying it but I don't have high hopes that it will work for someone who doesn't seem to mind playing in wet pants.

I also thought of purchasing the "Peter Potty" which is a standing toddler urinal made just for boys. My sister-in-law recommended it as it worked for slowly transitioning her son out of diapers. The Peter Potty purchase has not been made. Amazon.com is out of stock and we haven't decided if we wanted to try this. We'll continue to use the Baby Bjorn Potty Chair for now.

Another thing I tried was putting Matthew on the toilet. But he was not comfortable on it and seemed very unsteady even with me holding him since his feet couldn't reach the floor.

Standing to pee in the toilet isn't an option for him yet either since he is short. Standing on a stool and using toilet targets is another idea I've quietly entertained but haven't tried. He'll need more stability getting up on a stool and standing on it without holding on to anything and I'm afraid it might turn into a messy game, which would involve me mopping the bathroom floor multiple times a day.

A Learning Process
Matthew is learning the routine: use the potty, wash hands and dry hands. He is learning to pull his pants down and pants up, which requires finger and hand strength and coordination. He still needs help with this. He usually falls forward when pulling his pants up. He is learning that he needs to keep his balance when pulling his pants up.

It's the baby steps that matter to us. Some days we take a few steps forward. Some days we take a few steps back.

Potty Tracking
I've been tracking the number of successes and number of times he sits on the potty using my newest iPhone app "ListMaster." More searching led me to more iPhone apps specifically for potty training utilizing reward systems. However, Matthew doesn't yet understand cumulative reward systems so accumulating several stars to earn a treat or a toy will not work for us right now. So I'll stick to the chart I created on ListMaster for now. As you can see, our batting average for success is currently pretty low.

No Deadline
We're taking it a day at a time. Having him potty trained by the time he goes to Kindergarten would be ideal. Age 5 is the earliest that kids start Kindergarten here. Because his birthday is in October, which is past the beginning of the schoolyear (August), he will be going to Kindergarten a few months before he turns 6. So we have time. But if that does not happen, then we'll just have to rethink things.

Asking other moms in the DS community, it seems kids with Down syndrome potty trained at age 5 - 7 on average, with a few trained as early as 3 and a few as late as 8 to 11. Some did it in a week. Some took a few years.

Every child is different though. Maybe Matthew will be potty trained by his 4th birthday. Or maybe Matthew won't be completely potty trained until he's 5 or older. But right now, with his interest, cooperation and willingness (very important!), we feel it is certainly worth the effort to try. It's another little step toward independence.

Stopping and trying again later is also certainly an option.

Your Experiences, Ideas and Strategies
Please share potty training ideas and what worked for you by leaving a comment. I would love to hear them and many parents who read this blog would find it helpful too. Thanks!



Related posts:
Go Potty
Potty Training

Thoughts on Monica & David

I just watched an HBO documentary film called Monica and David. It's the story of two newlyweds in their 30's starting their lives together. They both have Down syndrome. I always get so emotional when watching films that are Down syndrome-related. I teared up in parts especially when Monica's mom said "She's my life's work."

I've always thought about Matthew's independence since he was a baby. Watching the film was validating of how truly important it is for Matthew to learn to do most things by himself. Like David's mom, I think about what would happen should I leave this earth. It's hard to think about but it's part of life. We can't prevent it from happening but we can sort of prepare for it. Bill and I set up a trust and will two years ago. I have prepared a letter of intent which I update when needed. And hopefully, there would be strong support networks like family, relatives, friends and special service coordinators who'd willingly lend a hand.

I've thought about the process of "letting go" when Matthew is older. I'll have to remember (or someone will have to remind me) to take a step back and allow Matthew to find his wings - go out with his friends without me tagging along, order his own food at a restaurant, work. Thankfully, I've got many years to go before taking bigger steps like that. For right now, we'll focus on self-feeding, undressing and dressing.