OT visit

Kira saw her OT today. We had to skip last month's visit because Kira was sick, so we'll see L twice this month. We didn't receive paperwork; I wanted to get this down before I forget. This will seem kind of random, sorry!

-Work on tasks that require stabilizing with one hand and performing the task with the other - zippers, pouring from a pitcher into a cup, stringing beads, etc. Start working on zippers, buttons, velcro by dressing big dolls with Jackson and Kira's clothes.

-Serving herself during mealtime. We always plate at the stove, so I guess I should start having some things on the table. Jackson could probably use help with this one as well!

-When she's stacking, Kira likes to push down on the block, almost like she's making sure it's stuck on there. Use tasks like putting coins in a piggybank to work on gently releasing.

The visit went really well. L had these stacking cups and she worked with both kids with them forever. L (and the other therapists, too) are always great about including Jackson during therapy, but this time she was really working with Jackson on skills, too. It was so cool. The bottom cup was number 11, so she would ask Jackson which number was next in the countdown. He would figure out the number, find the cup, and hand it to Kira. Then we'd name the color and Kira would stack it. Once they were all stacked, L had the kids take turns kicking it over. The next round, L would ask Jackson what color went next in the sequence.

They worked with the peg board and she was giving me lots of ideas on using the pegboard with both kids. L knows that I'm considering homeschooling and I love that she really takes the time to teach me and Jackson, in addition to Kira. I also think it makes "therapy" seem more like a fun playtime for all of us, and not like we're trying to "fix what's broken" in Kira.

She also had Kira sort the stacking cups by color - two colors at a time. She only put the wrong colors together once! I was really impressed, because we've been working on color identification, but not sorting by color. She also pointed to and said "cheek" - I didn't even know she knew that word or body part! I really think Kira's best teachers are herself and Jackson. She knows things that I know I didn't teach her.

I'm going to be so sad when ECI is over for Kira. (Although I won't miss the getting ready for visits part.) We've been blessed with wonderful therapists who really get how our family operates. I'm so thankful.

speech revisited - this one's for Megan

Megan, mom to the lovely Audrey and adorable Stella, asked for more info on this post. So, I'll try to answer her questions and provide some more detailed info.

Her questions:

What exact age did you start speech?
And how did you teach the straw/cup?

Starting speech:
We had an evaluation with our speech path when Kira was 2 months old. Kira and I had a rough start to breastfeeding. I wanted a speech path to make sure that Kira's latching on looked ok. (I didn't want Kira to have to "re-learn" how to hold her mouth, etc.) When I called ECI (Early Childhood Intervention) to set things up initially, I requested the eval. Luckily, Patricia (our speech pathologist) was able to make room for Kira pretty quickly. We started seeing her regularly less than two months later. I don't know how soon speech services would have begun if I hadn't made that initial request.

Using a straw:
We started our son using a straw really, crazy early - like around 2-3 months. Sucking a straw is very similar to breastfeeding. My mom is a l&d nurse and suggested starting it early - using expressed breast milk in a cup. He was able to do it immediately. I hadn't even thought of doing it with Kira (so many other things on my mind at that time), until Patricia suggested it. Kira was right at 5 months, I think.

To get Kira started, I first put the straw in a cup of breast milk and held my finger over the end of it to create a vacuum. Then I put the straw in Kira's mouth and let the milk dribble in. We did that a few times, so she'd get the idea. Then I put the straw in the milk and let her try. I honestly can't remember how long it took her to figure it out, but I'm thinking she caught on that first day.

ETA - just thought of this - when we started we cut the straws really short (like about 1/3 of the straw), so that Kira wouldn't have to work too hard to get the reward of the drink. She didn't use a full size straw until a few months later.

Using a cup:
Kira's first few speech therapy visits were all about drinking and eating. Initially, we supported Kira's jaw when she drank from the cup. I'm sorry, but I can't remember exactly how Patricia had us do that. I think I held my thumb and pointer finger in a "U" shape and supported Kira just under her jaw - you'd want to double check that with a pro, though. We helped with the jaw support until Kira regularly drank without letting liquid dribble back out.

We also made sure that the cup rested on Kira's lip, not on her tongue. If she stuck her tongue out in anticipation for the cup - I'd wait until she had retracted it before I let her drink.

Using a spoon:
I'm thankful that we had Patricia around when we started Kira on solids. I know 5 months is early to start, but Kira was practically yanking food out of our mouths at that point. When you start spoon-feeding a baby, you usually do that whole scoopy spoon movement - where you put the spoon in and then lift it up, sliding it against their lip as you pull it out. Patricia told us not to do that (and man was that hard to re-learn after feeding Jackson).

Patricia had us put the spoon straight into Kira's mouth - like perpendicular to her mouth. Then Kira would do the work to get the food off of the spoon. Patricia also recommended not using the spoon to wipe food off of Kira's face (you know when you scrape, scrape, scrape then feed that whole extra spoonful to your kid). She wanted to make sure that Kira knew exactly what her mouth was supposed to do when presented with a spoon.

Speech up to about 12 months:
So, until Kira was about 1, speech therapy was mainly about eating and mouth exercises. Patricia had us do a "palate swipe" - kind of a massage for Kira's palate. The purpose of it was to help Kira's palate come down a little in her mouth, so that her speech would sound more typical later on. If you have "regular" muscle tone, when your mouth is relaxed your tongue kind of sticks to your palate and slightly pulls on it. Babies with low tone, however, will typically have their tongues resting at the bottom of their mouths.

We also did an exercise where we would put our pinkie finger where Kira's jawbones meet and let her bite, bite, bite. This was to help with strength and mouth posture (I think).

There may have been a couple of others - I'll go back through Kira's paperwork (if I can find it) and check.

Speech after 12 months:
Once Kira started regularly babbling and saying a few words, we started the sound card system. I think it's something that the group our therapist works with started. More info here.

The sound card system uses pictures and signs to cue sounds. Each of the 21 initial consonant sounds has a name, picture, and a sign/visual cue. We used the cards for several months. Now, we just use the cues.

So, for example, the "h" sound (like in "hello") - the name of the sound is "tired dog", the picture is of a dog, and the cue is holding your hand in front of your mouth like you're feeling the air coming out as you make the sound.

If Kira is trying to say a word and I want to isolate the sound, I use the cue while saying the initial (or ending) sound. I usually repeat the sound, word, and cue a couple of times. Then, I'll use the actual sign for whatever word I'm saying.

For example, the word dog. I'd say "d" (use cue) - "d" (use cue) - "dog" (then pat my leg - the sign we use for dog).

For us, speech therapy was initially about prepping Kira's mouth for speech. Now, we've moved on to actually producing speech. I'll post more later about the sounds she's mastered, what we're working on, and so on.

I'm happy to answer any questions, so y'all feel free to ask!

ECI - occupational therapy visit

Kira saw her occupational therapist, Laurie, today. We started with Laurie when Kira was 2 months old and have always seen her once a month. When Kira was small, Laurie and Chris, Kira's physical therapist, both focused on many of the same things - head control, trunk control, etc. We saw each of them once a month - so that meant that Kira was seen roughly every two weeks. It was a nice fit for us. We now see Chris quarterly.

Today's report:

What's New/Progress: Put on shorts yesterday, beginning 2 word phrases, puts trash in trash can independently.

Goals/Outcomes Addressed:

1. taking on/taking off simple clothing with minimum assistance


2. open/close zippers with assistance


3. string beads (3)


4. imitates drawing a circle and horizontal line

Routines (summary, observation, assessment, plan): Shirt off if loose, completing a dressing activity if Mom starts. Beginning to pretend play with baby dolls, showing empathy to brother. Working on opening ziploc bags and using zippers - pulls ribbon on zipper pull if hands are placed, opens and removes toy or food, etc.

Recommendations: continue strategies

I think it was a good visit. Last month, Laurie recommended tying a small piece of ribbon in a loop to the zipper pull of a small change purse. Kira can hook her finger through the loop to open and close the zipper, until she builds up enough hand strength to grasp the pull itself. She's doing pretty well with this task. We have to place her hands in the correct spot, but she's doing a good job with the pulling.

The switching hands concept is also something we are working on with the stringing beads. Kira understands to put the wooden needle in the hole and pushes it all the way through. We're working on the next steps of switching the bead to the other hand , then grasping the needle and pulling it the rest of the way through, and finally, pulling the bead on down the thread.

"Showing empathy to brother" - On this one, I have to say how lucky Jackson is to have Kira for a sister. He'll get upset with me and go storming off mad and crying. Kira will go to him and pat his back. She'll say "urt?" (hurt) or "ad?" (sad). She'll give him great big hugs and try to cheer him up. Every now and then, he'll be sitting in time-out because of something he's done to her. And she'll be sitting right there next him, consoling him. All is forgiven in about 2 seconds.

The trash can mention is one of those things that I appreciate Kira doing, that I never took the time to notice when Jackson started doing it. I realized the other day that she's gone from throwing random things into the trash can to actually throwing trash in it. I think one of the positive things of parenting a child with Ds is getting to appreciate those small accomplishments and to recognize how those seemingly tiny things add up to really big deal things, like the hope for independent, successful living later on.

Laurie also mentioned a really cool idea that she saw at a daycare the other day. We're past the baby food stage, but maybe someone else can use this tip. At the daycare, they were using this type of baby food container:

to make blocks with. They would glue little toys inside and then glue the lids on. What a great, thrifty idea for see-through blocks! All I ever thought to do with those was to re-use them for cheerios, etc. in the diaper bag.