TalkTools Straw #7

Straw #7 is the second to the last one in the TalkTools straw hierarchy kit. Matthew used this straw for 3 months, from April through June.

It must have been harder to drink with this straw as he didn't transition to this straw as easily as he did with the previous one. It seemed longer than coily straw #6. But as with the others in the straw hierarchy kit, he used the straw daily for most of his drinks, even at school. I sent one straw and cup to his preschool daily for him to use at snack time. He eventually warmed up to this straw and could drink a whole cup of orange juice, lemonade, or chocolate almond milk without any issues.

In the beginning of July, we started with straw #8. On straw #8, I noticed he regressed back to a pattern of suckling (straw resting on tongue when the tongue is too far forward then moves forward more, rather than back, when sucking on the straw) instead of sipping (using lips only). We went back to straw #7 for a day to see if we had moved on too quickly. He did just fine for the most part and easily corrected with verbal cues from me (as seen in the video). The speech therapist whom we work with in NACD suggested that we move on to straw #8 with more manual support and a tactile cue such as a lip block or medical tape 1/4-inch from the drinking tip.

Tall Kneeling

In January this year, I emailed Matthew's physical therapist (PT) at school to ask how he was doing during his PT sessions. One of the things she said was that in the group he had difficulty staying in a tall kneeling (on knees, not sitting on buttocks) and half kneeling ( one knee up the other down on floor and balancing in this position).

When googling for information on tall kneeling, I came across Adaptivemall.com. We didn't need the equipment but it was very interesting to see that adaptive equipment to help with tall kneeling actually existed. Also to quote from the site:

Tall kneeling is achieved when someone is kneeling and the buttocks are not resting back on the feet. Tall kneeling can assist with the development of balance and leg strength. Note: This position can be difficult for people who have limited ankle bend (plantar flexion) or who wear ankle foot orthotics (AFO).

Matthew doesn't wear orthotics but he does have insole wedges in his shoes for ankle support since he has pronated ankles(but I don't think that matters). The gluteal/buttock muscles are needed to maintain the tall kneeling position. I imagine his gluteal muscles didn't inherently have the tone to easily get into a tall kneel and maintain it. He always preferred to sit on the backs of his feet to stabilize himself.

And of course, I wanted him to develop better balance and leg strength because that will make more physical play activities easier for him. So what do we do? We work on it at home!

How to Position?
His PT and NACD evaluator gave me a few suggestions:
- try kneeling at support surface.
- work on him imitating you go from sitting on heels to tall kneeling position, or in front of a mirror.
- (if he were still in diapers) try bridges, like when his diaper was being changed, ask him to raise his bottom up with knees bent and feet flat on the floor. Hold the position for 5-10 seconds....move a train, ball under his hips to keep hips up.
- have him get on hands and knees and cross creep (crawl on hands and knees). Then while facing him, model getting up into a tall kneel and ask him to do it. From there play something or sing something while maintaining that position.
- practice kneewalking around the room to get things off of the sofa or low tables.

Which strategy worked for him? Asking him to cross creep and then get into a tall kneel to kneewalk and then pause in the tall kneel position helped him understand the concept of tall kneeling. So we played around with kneewalking a lot. He liked jumping and running on giant bubble wrap so I used that as our kneewalking activity motivator.



Within days, his kneewalking improved. More importantly, he was developing the balance and strength to maintain the tall kneeling position for longer periods of time. He'd still sometimes take 3-second breaks to sit on the backs of his feet but he could now easily return to the tall kneeling position without falling over.

Just yesterday, Matthew, Elizabeth, and I had lots of fun playing a fast-paced game of rolling the beach ball back and forth to each other in the tall kneeling position.

At age 2, Elizabeth had no trouble with tall kneeling at all. Seeing her easily play in tall kneeling was one of the many reminders of how much more work Matthew had to put in just to achieve what Elizabeth could do so naturally and effortlessly (relatively). It's at moments like that when one simply appreciates each child's development as it is and admires and learns from Matthew's determination and can-do attitude.

TalkTools Straw #6

It's hard to tell if straw #6 is shorter than straw #5. Because of its coils, straw #6 doesn't stick out of the cup as far as straw #5. Matthew had an easier time drinking from this straw mainly because he didn't need to hold the cup out as far.

I also ordered two extra #6 straws as back-ups to replace the ones with internal residue build-up. Matthew easily transitioned from the previous straw to this one as they were the same diameter. Like the previous straws, he used this straw for most of his drinks including chocolate almond milk, orange juice, apple juice, and water everyday. The straw was sent to his preschool as well for him to use at snack time.

I'm not sure if I had mentioned it in any of my previous TalkTools straw posts but Matthew is on straw therapy as recommended in his NACD program. So we also used the straw as part of a set of oral motor stimulating activities specified in his daily program.

Matthew started on straw #6 during the Christmas break. He could've moved on to straw #7 after a month but I kept him on this straw for almost 3 months because there was so much going on that I just kept forgetting to move him on to the next straw in the hierarchy. It didn't hurt to keep him on the straw longer anyway. The instructions only discouraged from moving on to the next straw within a few days, which would be too fast of a transition. As of April this year, he was on straw #7.

TalkTools Straw #5

Straw #5 was the same diameter as straw #4. However, straw #5 was a little longer than the previous straw and used without a lip block.

There was noticeably less reminding on my part to use lips only, no tongue protrusion, when drinking. I had ordered two extra #5 straws, anticipating Matthew to be on straw #5 for at least a couple months. Since he uses the straw for most, if not all, his drinks including water, orange juice, apple juice, and chocolate almond milk everyday, residue build-up in the straw was expected no matter how well it was rinsed through after every use. I also sent a straw to his preschool for him to drink with at snack time.

He was on straw #5 for almost 3 months. He "graduated" to straw #6 during the Christmas break.

TalkTools Straw #4

"Use your lips, not your tongue." That was what I'd say when we started with Straw #4 in the beginning of June. I doubt many parents have to give their children specific (and odd) instruction on how to drink with a straw.

Straw #4 is relatively a shorter straw and has a smaller diameter than straw #3. The smaller diameter makes straw #4 a challenge. In the beginning, I used a lip block (as shown in the photo) to control how much straw tip goes into Matthew's mouth.

The lip block, which was positioned 1/4-inch from the tip of the drinking tip, was essential as a tactile prompt to seal his lips around the straw. Without the lip block, he sometimes shifted to suckling or wrapping his tongue under the straw as his natural urge is to let a longer straw tip into his mouth. A longer length of straw in his mouth (more than 1/4-inch) makes it easier to suckle.

Without the lip block, verbal prompts or reminders "use your lips, not your tongue" and my fingers positioned 1/4-inch from the drinking tip were necessary to get a similar effect as having the lip block in place. Then I re-read the instructions and learned that I was supposed to cut the straw close enough to the first loop so that the loop served as a lip block. So I cut the straw and did away with the yellow rubber lip block.

After 4 months of using straw #4, I have noticed better and stronger lip closure. Along with this physical progress, I have noticed clearer articulation of single speech sounds. Stringing sounds together is still a work in progress though.

I don't doubt that the straws have been helping Matthew develop a stronger oral foundation for speech but his progress in speech is really a combination of the right amounts of speech therapy, reading sight words, oral stimulation techniques (including use of the TalkTools straw kit), and articulation practice. Other oral stimulation techniques include using a z-vibe and offering food that require a lot of chewing or brings more awareness to the mouth such as pickles, grilled chicken, grilled steak, fresh cut apples, lemon sorbet, and so on.

Since the end of September, he easily and successfully (no leaking) drank 4 ounces of milk or juice with straw #4 in one uninterrupted sitting and with less prompting. He has moved on to straw #5!

The Not-So-Well Visit

It was time for Matthew's annual well visit with the pediatrician. Matthew is generally a healthy kid but his pediatrician visits are lengthier and more comprehensive than Elizabeth's doctor visits. There is just so much to go over and keep an eye on such as the thyroid, Celiac disease, blood counts to screen for leukemia, vision, hearing, and so on. Having Down syndrome, in addition to any possible family history of medical issues, puts him in a position of "higher risk" for certain health stressors.

Thankfully, Matthew has not had any major heart issues so he does not see a cardiologist on a regular basis. He had a slight murmur for a few years but that seems to have disappeared.

Reactive Airway Disease
This well visit turned into a not-so-well visit quickly when wheezing was detected through the stethoscope. Matthew had developed a cough on Saturday evening after his birthday party.

He got a breathing treatment right away, which consisted of arbetural delivered via a nebulizer and him sitting, breathing it in and cooperating for 10 whole minutes. He wanted to go home already but we were able to make a game out of using the nebulizer so he fully - and happily - cooperated with the nurse.

The wheezing was reversed after the breathing treatment. This meant that the breathing treatment worked. This also meant that he did not have bronchitis. I will be continuing breathing treatments at home for every 4 to 6 hours or as needed.

I only hope that this does not turn into asthma.

Bloodwork
The part of his annual well visit that I dread the most is bloodwork. Matthew has tiny veins and is a hard stick that many lab technicians have had to stick the needle in his arms and or heel more than once on many occasions. We have only found one lady lab technician who was more skilled at it than any other we have met. Unfortunately, I forgot her name but I know where to find her.

Tip: Once you find a really good lab tech for bloodwork, remember their name and if possible, request for the person at the next blood draw.

It is extremely emotionally stressful for me to have to hold him down or watch him being restrained by several people to get his blood drawn for a series of tests to check thyroid, vitamin D, ferritin, blood counts, and screen for Celiac disease. Matthew cries so hard as struggles to free himself that he breaks a few facial capillaries. This results in two patches of facial petechiae around his eyes for a couple of days.

I am thankful that this year, we did the bloodwork simultaneously with Matthew's orchiopexy surgery. There was minimal restraining involved and it went much quicker since the nurse was able to draw blood directly through the IV needle, which was already in his arm.

The results of the bloodwork: no Celiac disease, thyroid was within normal range, blood counts were within range, and Vitamin D was still on the low side.

Vision
A new concern this year involved his eyes. His neurodevelopmentalist at NACD had noticed slight strabismus so I brought it up with our pediatrician. She concurred and suggested that we have our opthamologist do a more comprehensive exam.

Strabismus is a condition in which the eyes are not properly aligned with each other. It can adversely affect depth perception.

Time to schedule an appointment with our pediatric opthamologist.

Ears, Nose, and Throat
His throat was red today. Probably another virus. But his nose hasn't been runny and he has been fever-free so hopefully this will pass quickly. I'm not sure how this is related to the wheezing though.

Ears were waxy but both ear tubes were still in. We're due for another visit to the ENT soon.

TalkTools Straw #3

Ever since starting straw therapy with Matthew, I've been trying to offer drinks using his therapy straw only so he gets as much practice with it as possible.

Longer than straw #1 and straw #2, I was worried that Matthew would have a hard time drinking with it.

I was wrong. Not the first time he has proven me wrong. He can get the juice or water from the cup all the way up the long straw into his mouth, which may not seem like a big deal for any typical person, but in my eyes, that's good "sucking" power! The lip block is set at 1/4-inch from the tip of the straw and it is a tactile prompt for Matthew to use his lips to suck from the straw instead of wrapping his tongue underneath it (suckling like a baby would with a bottle nipple).

When drinking, I always hold his cup anyway to keep the straw in place so the length wasn't an issue for him. And we still used the take 'n toss plastic cups even if the straw was more than double the height of the cup.

He was on straw #3 from mid-April to the end of May. Moving forward with straw #4!

NACD Free Telephone Seminar on Down Syndrome

The National Association for Child Development is hosting a free telephone seminar on April 27, 2011 at 8pm (CST).

This is Part 2 of a seminar on Down syndrome. Part 1, which was done in March, was very successful and packed with information. It is available as a free podcast on iTunes (search for "NACD" on iTunes).

Topics to be covered include:

- Understanding hearing--why it is such a huge issue with Down Syndrome and how to address the problems
- Speech--how it is affected by hearing, structure, and function
- Looking toward our children's futures:
Self-help skills, chores, behavior, and on becoming responsible
Creating a target
NACD Foundation--creating a different model for our children's future

The Conference Call number is (712) 432-0075. (This is a long distance call. If you do not have long distance services on your phone, Skype is a recommended alternative.)
The Conference Code is 662415.

IMPORTANT TIP:
When entering the telephone seminar, hit *6 to mute your line to avoid sharing background noise with everyone on the call. To ask a question, hit *6 again to unmute. *6 allows you to toggle between mute and un-mute.


We will be listening in on the telephone seminar. Will you?

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.

Here's a short video of Matthew using straw #2.


Related posts:
TalkTools Straw Hierarchy Kit
TalkTools Straw #1

TalkTools Straw #1

Straw #1
It's a blue straw with a duck that serves as a built-in lip block - to prevent too much of the straw to be in the mouth. Before starting, I trimmed the duck end of the straw to 3/4-inch, which was how much straw he usually had in his mouth when drinking from any straw.

He started with straw #1 after Christmas as part of his individualized NACD (National Association for Child Development) program. He was on it for 2 months. He would've been on it for much less time if I had been more consistent with it and if I didn't run into a problem.

The Dilemma

He bit the straw tip and flattened it. He did the same to the spare #1 straw in the kit. I tried to save the straws by re-rounding them. I was successful the first few times then the tips of the straws started cracking, making them unusable.

I cut off the duck and improvised with a makeshift lip block. But then I realized that cutting the length was probably not ideal. It made it easier for Matthew to drink with the shortened straw but it probably wasn't ideal for the objectives of straw therapy.

Moving On
After consulting with the speech therapist via our NACD coach, I got the green light to move on to the next straw. At that point, he was drinking with only 1/4-inch straw tip in his mouth, which meets one of the criteria for moving on to straw #2.

Straw #2 started at the beginning of March.

Related post:
TalkTools Straw Hierarchy Kit

TalkTools Straw Hierarchy Kit

Tongue protrusion and low muscle tone (also known as hypotonia) are common among individuals with Down syndrome. Is it because of an enlarged tongue? Is it because of hypotonia (low muscle tone)? Contrary to the belief that it is because of an enlarged tongue, I have come across some literature that low muscle tone leads to tongue protrusion. I mentioned this in my previous post "On Tongue Protrusion". The article "Tongue Protrusion" by Karen Henderson SLP, explains it and provides suggestions to promote tongue retraction. (The article is available as a .pdf file online. Google Tongue Protrusion Karen Henderson).

Hypotonia affects all the muscles in the body. The tongue is a muscle. We have mouth muscles that allow us to move our mouths, chew, and keep our mouths closed to keep our tongue in. Without hypotonia, our mouths are naturally closed when we're not talking or eating. With hypotonia, it seems that natural tendency is for the jaw to remain open and tongue thrust to occur.

The TalkTools Straw Kit is one of the tools to inhibit tongue thrust. The idea is to improve mouth and tongue tone through a hierarchy of drinking straws that encourage utilization of various targeted mouth/ tongue muscles.

There are 8 straws. Each straw is different in length, diameter, and form and intended to address certain areas of the tongue. The straws also promote lip closure.

I had considered finding similar straws at dollar stores instead of buying this kit. But it would be too troublesome and time-consuming for me. I also wouldn't have the instructions that come along with the kit.

I recently learned that when drinking out of any straw, even one not in the TalkTools straw kit, only about 1/4-inch of the straw should be in the mouth for proper lip closure and straw drinking. With a lot more than that in the mouth, Matthew starts to suckle the straw instead therefore not encouraging the right muscles to improve tone and promote lip closure.

Matthew started with the straw kit right after Christmas. We are about to move on to straw #3.

Keep in mind that there are many other ways to improve muscle tone and awareness. Chewing (chewy food) is one way to make the mouth muscles work and get that tongue moving around. I listed other tips in "On Tongue Protrusion".

Do you use the TalkTools straw kit? What has your experience been with it?

Related post:
On Tongue Protrusion