Why Doesn't My Kid Talk?

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After preschool one day last week, Oliver and I walked behind one of his classmates and her dad for a little ways before they reached their car. As the little girl started to get into the back seat, she turned to us and said "Bye, Oliver!"

I turned to Oliver and said, "Can you wave bye-bye?" He did.

Then the little girl asked me a question I had never been asked before:

"Why doesn't Oliver talk?"

This was a perfectly innocent question coming from a 4-year-old. 

It caught me off-guard, though, and I didn't know what to say, so I just shrugged and said, "Yeah, he just says 'yeah' and 'go' a lot, doesn't he?"

That didn't really answer her question, and afterwards I pondered how best to answer it in terms that she might understand. Here's what I came up with:

"He has a boo boo on his brain. This makes it hard for him to move his mouth. It's kind of like when you have a boo boo on your knee and it's hard for you to move your leg."

"Everyone is good at different things. You're good at talking. Oliver is good at making people laugh."

"He's working hard to learn how to talk. He just needs some extra time to learn. People learn at different speeds." 

Another option would be to say "He has cerebral palsy" and then let the kid's parents educate themselves on the condition and offer further explanation to their kid as needed.

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I hope the little girl's dad wasn't too embarrassed by her question. It was a good question, sparked by observation and curiosity—both good qualities to nurture in a child—and it deserves an answer. What kind of world would this be if questions about differences were always shut down with a response like 'We don't ask that kind of question'? It would, of course, be a world with less understanding of differences, and thus less acceptance.

Let's all do our part to make the world a more accepting place by answering our kids' (sometimes tough) questions about differences. By doing so, we encourage their development of empathy, and the world could certainly use more of that.

Special-Needs Parenting Fantasy Vs. Reality

Parenting a kid with special needs doesn’t always go as planned. Sometimes I need to remind myself to just go with the flow, like in these 5 scenarios:  

Fantasy: Take kid to a children’s museum on his day off from school. Pay 8 euros for admission. Have a lovely time exploring the museum together and enhancing kid’s education.  
Reality: Discover admission is 14.50 euros, and pay begrudgingly. Kid decides to spend the majority of time practicing going up and down museum’s stairs and riding the elevator. While wearing a costume from the firefighter exhibit. 

Mental note to self: Go with the flow.

Fantasy: Buy fun stickers of little eye balls, noses, mustaches, and bunny ears. Use them to decorate hard-boiled eggs with kid the day before Easter. 

Reality: Stickers won’t stick to egg. Kid just wants to roll egg around anyway. Kid discovers egg can be spinned and finds this hilarious. Then kid tries to eat egg with shell on.  
Mental note to self: Go with the flow. (But don’t let kid eat egg shell.)

Fantasy: Put kid in his new “big boy” bed for an afternoon nap. Take a quick power nap on the mattress next to his bed and then sneak downstairs to get work done while kid sleeps.
Reality: After being put in bed, kid peaks over bed railing and smiles down at Mommy. Kid tries to climb out of bed and onto Mommy’s mattress, and succeeds. Kid snuggles with Mommy briefly, gets bored, and crawls off of mattress to play with toys. Kid gets lonely, climbs over Mommy to get onto Mommy’s mattress, snuggles briefly, crawls off of mattress to play with toys, and then repeats. Mommy dozes in and out of sleep for an hour.  
Mental note to self: Go with the flow. (And try to go to bed earlier.)  

Fantasy: Go to grocery store and buy 4 loaves of bread for kid’s sandwiches for school lunches. Go home and put 1 loaf in kitchen cabinet and freeze the other 3. Feel nice and prepared.  
Reality: Go to grocery store and discover that they’re out of their only kind of bread that is nut-, peanut-, and sesame-free and therefore safe for kid to eat. Stock up on Cheetos and wine instead.  
Mental note to self: Go with the flow.   

Fantasy: Have an indoor Easter egg hunt for kid, who will find eggs and giggle with glee.
Reality: Have an indoor Easter egg hunt for kid, who does not want to look for eggs because new bucket with which to collect eggs is way more interesting. Mommy collects the eggs herself and puts them in bucket. Kid dumps them out of bucket and puts them back in himself.

Kid has a runny nose and cough and spends a good portion of the morning snuggling with Mommy on couch, being read to and doing puzzles. Kid eats chocolate bunny ears. 

Mommy eats chocolate bunny eyes.

Mental note to self: Sometimes reality is pretty awesome.

An Affordable Online Program That Helps Non-Verbal Kids Learn to Speak

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I recently found out about an online video-based program called Gemiini that has helped thousands of non-verbal and low-verbal kids learn to speak—including kids with autism, Down Syndrome, and language delays.

My 3.5-year-old son has cerebral palsy and speaks only a few words, so when I found out about this program via a mom in a local special-needs Facebook group, who wrote about how much it had helped her daughter, I was instantly intrigued.  

I went to Gemiini's website and came across stories of non-verbal children speaking their first words within the first few months—sometimes even on the first day—of watching Gemiini videos, and other stories of non-verbal children counting out loud, identifying shapes out loud, or even starting to speak in simple sentences within the first few months. These are children who had sometimes been in speech therapy for months or even years.

It sounded almost too good to be true. Is it? 

What is Gemiini?

The Gemiini program utilizes a technique that the founder developed called discrete video modeling. This technique strips language down to the components that are most essential for language comprehension and speech production.  

For example, in the beginning of their Animals Part 1 video, a young woman says the word “crab” in front of a plain white background. As she says this word, a photograph of a crab and the typed word “crab” appear in the upper left of the screen.  

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crab

The woman repeats the word “crab” a total of 5 times. Sometimes the camera zooms in so that her mouth fills the whole screen. In these shots, her vocalization is slowed down so that viewers can easily see the movements of her lips and tongue. At another time, the camera shifts to a plan white background, and then three crabs appear one at a time, each accompanied by the woman's vocalization of the word “crab.”  

A different young woman appears, again on a plain white background. She places her hands in a shrug position and says “What does a CRAB say?”  

After a pause, the camera shifts to a boy and a girl who open and close their hands repeatedly, like a crab opening and closing its pincers.  

The names of 4 additional animals are presented in a similar manner.  

The video is about 6.5 minutes long. At the beginning, and interspersed 3 more times throughout, is a 10- to 20-second segment of video of a young child dressed up as a fireman, pretending to put out fires. Each of these segments is set to fast-paced music (“Flight of the Bumble Bee”) and is designed to keep kids interested in watching the video the whole way through.

Using their discrete video modeling technique, Gemiini has produced more than 60,000 (!) videos. This may sound overwhelming. Where would I begin? you might think.

For many young children, Gemiini makes it easy to decide. They have a program called “Quick Start: Beginning Language For Young Learners" containing 219 videos, mostly about concepts often taught in the preschool years—e.g., animals, shapes, colors, and daily routines.

You can just have your child watch the videos in order, or you can pick and choose the ones that are most important for your child to focus on. You can even create customized videos for your child (more on that below).

Gemiini recommends that each video be viewed 40 times—optimally, twice in a row 3 times per day—before moving on to the next video. They can be viewed during meals, in the car to and from school, and during other daily routines (more on that below, too).

Research studies on Gemiini  

As a scientist by training, I chose to read about research studies on Gemiini. 

In a pilot study, a special education teacher in an Early Intervention program used Gemiini for 1 whole school year with 8 children with autism, including 6 who had low verbal skills and 2 who were non-verbal¹. All of the students experienced large gains in attending skills, social interactions, and language development, and the 2 non-verbal children were speaking in sentences within 6 months.

Another study compared the effectiveness of Gemiini (a discrete video modeling program) with a standard video modeling program in improving expressive language in students with autism and other disorders². The study was a double-blind study, meaning that neither the researchers nor the students knew which program the students were getting, thereby helping to prevent bias in the study results. The study was conducted in a group setting over 3 weeks across 4 special-education classrooms. Compared with the standard video modeling program, Gemiini was found to significantly increase expressive vocabulary in the participants.

While only a handful of studies have yet been done on Gemiini, the initial results are promising.

Getting started with Gemiini

A subscription to Gemiini costs $98/month, which seems reasonable to me—especially considering that speech therapy, if paid out-of-pocket, could easily cost $98 for just 1 or 2 therapy sessions. Awesomely, Gemiini offers reduced fees to families in need.

They also offer a free 7-day trial.

Considering all of this, I decided to try out Gemiini for my son. I figured the program certainly couldn't hurt him, and given all of the positive anecdotes about it and the promising research, I was hopeful that it would in fact help him.

Registering for Gemiini was quick and easy. I just had to provide my contact and credit-card information and create usernames and passwords for myself and for my son.

After completing the registration, I was asked if I'd like to schedule a free phone call with a Gemiini representative who could help me get started. Hmm, why not? I thought, so I scheduled a call.

At breakfast the next morning, last Thursday, my son watched his first Gemiini video, Animals Part 1. He was immediately interested. In fact, he was so engrossed that he would not eat his breakfast while watching it. 

My husband and I have discovered that other times of the day work better for us: after meals, while our son is still strapped into his high chair; during diaper changes; while he's getting changed into his pajamas; and sometimes just in the middle of the afternoon when we have a lull in our schedule. 

my son watching a Gemiini video

My son had already been watching Baby Signing Time videos during many of these routines, so my husband and I just replaced those videos with the Gemiini videos for the most part.  

(Although, with our help, our son has learned a few signs from the Baby Signing Time videos, his progress has been slow, so we've chosen to explore other possible modes of communicating with him.)

My son watched the Animals Part 1 video a total of 8 times that first day. That evening, I had my scheduled phone conversation with a Gemiini Product Specialist, who pleasantly answered any questions I had.

How do I know when my son is ready to move on to the next video? I wanted to know. I didn't think he'd be saying all (or, likely, any) of the words from the first video after 40 viewings in just 1 week.

She recommended having him watch the first video 40 times in succession and then going ahead and switching to the next video in order to prevent him from becoming bored. Then I could show the Animals Part 1 video intermittently thereafter, maybe a few times a week, so that he would continue to get exposed to those words.

She also recommended creating a customized video, which is something she wished she had done earlier on with her own son. (That's right. She had used Gemiini with her own son, who is now 3.5 years old and, according to her, talking up a storm.) 

She suggested that the customized videos contain words that are highly interesting to my son—and thus might be motivating for him to try to say—and then to show those videos (or video) maybe once or twice a day.

My husband soon created a customized video for our son containing the word "go," which is 1 of 2 words that he says consistently. The video also includes the names of motor vehicles that he likes, like buses and cars. My husband's idea was that by including "go" at the beginning of this video, he'd be stimulating our son to talk (since he often repeats "go" when he hears it) and potentially encouraging him to also try to say words that appear later in the video.

First signs of progress

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The first sign of progress in my son came on Day 4 of watching Gemiini's Animals Part 1 video. At the end of that video, 5 photographs are shown, 1 of each animal that had been introduced. A lady says “Point to [pause] the crab," and someone lifts up their arm from off-screen and points to the crab photo. The same thing happens with the other 4 photos.

On Day 4, after about 20 viewings total, my son picked up my hand and started using it to point to the animals as they were named. This is significant in that, while my son had correctly identified animals by pointing to them before (e.g., in books), he had been unfamiliar with the phrase "Point to ___"; I had always prompted him with "Where is the ___?" 

So, either he learned the phrase "Point to ___" while watching the Gemiini video, or he was imitating the pointing motion that the person in the video was making. Either way, that's progress, since he doesn't always reliably imitate.

The next sign of progress came on Day 5, when I received a note from his personal assistant at preschool saying that he "was trying to talk alot [sic], making sounds, moving his mouth." I hadn't told her or anyone else at his preschool that we were starting to use Gemiini. (I wanted to try it out at home first.) My husband and I have since noticed that he's been babbling a lot lately at home, too.

Of course, we can't say for sure that his increased babbling is because of Gemiini. But it is certainly a possibility.

On Day 8, after 40 viewings of the Animals Part 1 video, we switched to the Animals Part 2 video. One of the animals introduced in the video is a monkey, and in response to the question "What sound does a monkey make?", some kids in the video say "Ooh ooh aah aah!" The day my son started watching the video, he started saying "Aah!" at this part. He's done it several times now, which tells me that he really is imitating the monkey sound rather than just making a random "Aah!" sound.

So, after a little over a week of using Gemiini, we've already seen several—albeit small—signs of progress. I'm excited to see what the future holds.

References

1. Gemiini Systems (2011). Gemiini Non-Clinical Trial - Comparing the Addition of GemIIni DVM to a School Setting with Children with Autism. https://gemiini.org/evidence/gemiini-non-clinical-trial-comparing-the-addition-of-gemiini-dvm-to-a-school-setting-with-children-with-autism#/get-started. 
2. Gilmour, Maria F. (2015). Comparing the Teaching Efficacy of Two Video Modeling Programs Delivered in a Group Format in Special Education Classrooms to Improve Expressive Language. Journal of Special Education Technology 30(2): 112–121. 

Disclaimer: I am not affiliated with Gemiini other than being a registered subscriber, and I was not paid for writing this post.

To the Strangers Who See My Disabled Son

my son

To the dad of one of my son’s preschool classmates: 

This morning, like every morning, you said hello to my son. But unlike every morning, this morning as you were sitting on a bench outside of the classroom, waiting for your daughter to change her shoes, my son approached you and reached out his hand, and you did something unexpected. You picked him up and sat him on your lap, just like you would with your own child, and you smiled at him. 

When your daughter was done changing her shoes, you asked her to walk with my son into the classroom. You asked her to hold his hand, which she gladly did, and help him get his name card off of the classroom door.

I was so touched by your kindness and by the lessons you were teaching your young daughter: to respect others—differences and all—and to help people when they need it. 

Thank you for teaching your young daughter these important lessons and for helping make the world a more tolerant place.

To a lady on the train on a difficult morning: 

Our usual train wasn’t running, so my son and I got onto a different train, which would take us on a long-ish detour. The train was crowded, and I had to stand. My son was sitting in his stroller, and for whatever reason, he wasn’t happy. 

I tried picking him up and holding him, but that was difficult, as I was standing and the train was moving. So, I put him back in his stroller, and he continued to fuss and scream. 

Until…

You looked at him and smiled.

He looked back at you, he "hid" in his stroller, he looked at you again, he giggled. You played peek-a-boo with him for several minutes.

Thank you for distracting him from his bad mood and for bringing some joy to our morning. 

To the mom on the sidewalk who witnessed my son’s tantrum: 

It was after school, and I was trying to put my son in his stroller. He was arching his back and screaming. He wanted to walk, but we needed to catch our train. 

You walked by with your own son in a stroller, and after you did, you turned back and asked if I needed some help. 

You said that your son had just done the same thing 30 minutes ago when you tried to put him in his stroller. 

Thank you for your kindness and for helping me feel like I’m not alone.

To a bus driver at the station near our house:

My son loves to check out the parked buses—to walk circles around them, to walk up and down alongside them, to try to get on them.

You saw him and smiled, and you asked him if he wanted to sit in the driver's seat.

Thank you for your kindness.

To all of the strangers who look at my son and smile:

Thank you for bringing some extra joy into our lives.

Thank you, thank you, thank you.

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What acts of kindness have you experienced from strangers?

Please share in the comments below!