Speech, language and communication are huge concerns for most autism parents. They have surely been enormous concerns of mine. I vividly remember the sense of sheer desperation when Danniah (pronounced Dah-nn-ya) was 18 months old and the wait list for local SLPs was over six months long. Then when she did reach the top of the wait list it turned out that they had very little experience with ASD kids. There is nothing worse than identifying a critical need for your child and not being able to meet that need.
My daughter, who just turned eight, was essentially nonverbal until the age of three. When she was three she began saying “no”and “bubye” with regularity. Here and there she would utter a word, but she would not use it again. We began working with a classical homeopath who, on the second try, found a remedy that allowed her to gain a large fund of single words. Initially, we were so delighted to hear her say, “chips,” “juice,” “carrots,” “Elmo,” and “outside.” We thought, “Oh, yay! Here we go! Language explosion is coming!” Yeah, not so much. Her acquisition of language has been anything but normal or expected. After a Son-Rise training when she was almost four, we were able to help her translate those one-word requests into “I want ___.” And then we got stuck there. For a really long time. In many respects Danniah is very verbal, just not particularly functionally so. She is an avid scripter, able to recite any scene, song or whole movie after just one viewing. But when it comes to functional language, she really struggles.
We noticed early on that she suffered from word retrieval issues. It would be worse directly before a cold, when the pollen was high, or just on random days. She will use the wrong word or simply not be able to find the word she is looking for. You can see her searching diligently for the word, getting frustrated and finally saying some word that might be related in part of speech. For example, she will often default to the words “make for” when she is looking for a verb or “this one” when looking for a noun. Danniah’s sentence structure is off when she is generating her own language and not simply recalling a script that her team has trained her to use. Sometimes she has these stellar days with her own self-generated language where she notices, “Dad is not here” or she shares, “Omi, I love the Mormon Tabernacle choir.” (Newfound interest of hers 🙂 ). In fact, those two sentences were minutes apart and uttered just last month. But when she woke up the next day, she did not continue with comments like that, and it seemed harder than ever for her to find words. Sometimes she wants to play a game that involves scripting a scene from something she loves. As we play, she can sometimes fall into advanced jargon, unable to structure sentences or find words quickly enough. It has left us scratching our heads on many occasions.
How can we help her? I pine to have conversations with her. Every cell of my being wants to hear her tell me about her day, what she did, what she likes and doesn’t like, and what she thinks and dreams about. And she, very clearly, has a desire to be able to communicate typically and is frustrated when she can’t. While the scripted responses she has been trained to use by her school team in the past two years have been helpful for her to get some immediate needs met, novel, self-generated language remains a big challenge. I also live in an area with limited resources, so finding adequate, effective treatment has been a profound challenge as well.
Along comes GemIIni
Have you noticed the GemIIni ads in your newsfeed lately? I will admit I saw them back in October and ignored them. I saw something about its effectiveness in getting nonverbal kids to talk and I immediately thought, “Well, damn, I wish I knew about this a few years ago, but now I have a pretty verbal scripter with word retrieval and processing problems.” With the same fervid persistence of my food-loving Puggle at dinner time, GemIIni continued to come up in my newsfeed, and I found it increasingly difficult to ignore. Finally, I messaged Laura Kasbar, the mom of five who developed GemIIni. She has twins who were diagnosed with autism and who are now in college and thriving thanks to GemIIni. I explained a little bit about my daughter and asked if she thought GemIIni could help. She wrote back promptly stating that it would help tremendously, but how it would help was better explained in person after logging in. Sometimes, as much as I strive to be positive, there is a skeptic in me that can be difficult to tame. That skeptic was alive and well the evening of my exchange with Laura. Once I saw “log in and call,” which meant subscribing before I was convinced, I simply dropped it. Fast forward a couple of months later and, lo and behold, GemIIni began consistently popping up in my newsfeed again. Shortly thereafter and seemingly out of the blue, I received an email from Laura. Have you ever felt like the Universe was whacking you over the head with a two-by-four because you were just a little too slow at picking up on the first million clues it sent you? I had one of those moments when I saw her name in my inbox.
In the email, Laura specifically addressed the issues I had posed in my first message: word retrieval, defaulting to “this one” or “make for” when she can’t find a noun or verb, as well as the fact that she could spell any word and read any book starting at the age of three . . . but we were unsure of her comprehension since she is not conversational and not really answering questions. She told me that first and foremost my daughter needed to work on “working memory.” Laura recommended that my daughter do sequential processing working memory for at least 20 minutes a day. She also felt that engaging her in Quick Start Language using the videos that I was not positive she knew would be important. Once that was finished Quick Start Reading was recommended to address her possible hyperlexia, which is not really reading with comprehension. Quick Start Reading has been shown to convert hyperlexia to actual reading. I read the email a few times, feeling encouraged but still unsure. After all, I thought, she excels at those memory match games. You can give her fields of a hundred or more and she remembers exactly where every match is after seeing it just once. I wrote that to Laura who responded with, “Hmmm . . . I would like to know what she scores once she does the working memory game. Also, Encouraging Conversational Speech category will install phrases that would be easier to retrieve as chunks.”
I was catapulted into that spot where I thought, “Well, really, what do I have to lose by trying this? We have spent more money on treatments and therapies, some with astounding results and some with no results. What the heck, let’s give it a whirl.” And with that, I signed up for GemIIni and pledged to document our journey with it in a TMR GemIIni series.
Initial Experiences and Results
Signing up was a simple enough process. You choose your subscription and then choose a username and login for both yourself and your child. I did that and almost immediately felt overwhelmed. The website says there are over 12,000 videos, but there has to be over twice that amount, and they add content daily.
Fortunately, there are Quick Start Language Videos! You can literally just read down the list and click and play, while you watch instructional videos to learn how to really use GemIIni. In the Quick Start section, they have options for high and low internet speeds as well as options for you to edit and test each lesson. Now, why might you want to edit something that is pre-made? Isn’t that pre-made, research-backed video perfect to teach the concept without needing editing? Yes and no. Yes, the videos are well made and teach concepts well. However, not everything our children need to learn is attention grabbing. For example, younger (and older) kids may love the animal sounds videos. The “What am I?” and “What sound does a crab make?” type questions have certainly elicited laughter and creative game playing, but the more “academic” topics are not quite as riveting. Here is where GemIIni can really shine. They have categories for just about everything, including a great humor category. It allows you to select shorter videos that will hold children’s attention as they learn. For example, say you have a younger child and you want to teach shapes. You can let the video progress through two or three shapes and edit in something that your child loves. If you have a son who loves tractors, you can edit some tractor pictures in. If you have a daughter obsessed with kittens, there are many funny clips of cats and kittens playing and set to upbeat music.
One of our very first experiences two weeks ago was with a Quick Start Manners and Greetings video. Danniah loved it. For some reason she found it hysterically funny. After watching it a couple of times over the course of a couple of days, I happened to be home sick with a nasty stomach bug. A friend stopped over to drop off some homemade chicken soup (thank you, Neal!). He saw Danniah and nonchalantly said, “Hi, Danniah. How are you?” She immediately answered, “I’m fine. How are you?” She has never answered that question before. Never. I raised my eyebrows, pleasantly surprised.
She has also had fun with the animal sounds videos. She knows them already, but we used it as a basis for developing a back-and-forth cooperative game. We did not have puppets, so we signed an animal and asked the other, “What am I?” the other would answer. Then I would ask, “What sound does a <insert animal I just signed> make?” and she had fun making animal sounds. I just had fun playing with her rather than watching her play!
She is also answering some simple questions. For example, we were watching a video with the “What are you doing?” question in it. A few days ago, she was lying in bed playing with an elephant, sort of waving it over her head. I smiled and asked, “Danniah, what are you doing?” She smiled back and said, “I am flying the elephant.” Now whenever I ask that question she is pretty good at answering it. Her sentence structure might not be perfect, but she consistently answers now.
GemIIni also gives you the ability to create your own lessons. It is IEP season, as you all know. Danniah’s IEP came home stating that she cannot identify any of the coins in our currency. It was a goal that was apparently going to take nine months to meet according to the IEP draft. I decided to create a lesson on money for her. I chose all of the clips on coins and bills. Between every three I added something that she really enjoys. I added two animal “What am I?” clips, a “surprise going upside down” (Laura and her daughter go upside down on a couch and it’s super fun to watch) and some penguin clips. We played it through three times. Then I got four coins: a penny, nickel, dime and quarter, and we played a game. She loved the greetings/manners preselected video so using that as a model I said, “I want the penny! I want the penny!” She picked up on the cue and fun right away and said, “Say please!” I said, “Please may I have the penny?” She selected and handed me the penny from the group of coins. I said thank you, and she said you’re welcome.
We went through all the coins plus the dollar bill playing this game with variations in language. Then she dropped all the coins on the floor. She wanted them back, but was not in a position to easily climb down from her perch to get them. Struggling clearly with word retrieval, she pointed frantically to a coin and reverted to her familiar, “This one! This one!” I smiled and playfully asked, “This one what? What do you want?” She said,”Can you pick up the penny please?” pointing to the penny. Modeling from the prepositions and action words videos we had watched a few days back, I answered in full sentences “Yes, I can. It is between my feet. I am picking up the penny. I picked up the penny. Here you go.” She said thank you. I said you’re welcome. We went through all the coins similarly. She naturally varied how she asked me to pick them up, and I varied my answers. A little later she somehow lost all of the coins. She went looking for them and asked me,”Can you find the quarter?” When I spotted it, I again used the prepositions video cues and said, “Yes, I can. It is in front of my feet. The quarter is in front of my feet.” Once we found that, we went looking for the dime and so on until we found them all. Then I had the coins and she asked for one at a time while I had her pick them out.
So in about 30 min total (rather than nine academic months) she learned to not only identify all of the coins, receptively and expressively, but she was using full sentences, prompting me to be polite if I wasn’t, using her manners, and practicing prepositions and action words as well! All thanks to GemIIni . . . and we’ve only been using the program for two weeks! I haven’t seen that much focused, functional language from her before.
(Disclaimer: given working memory issues that I will explain in a later blog, I am certain we will need to reinforce this new knowledge for a while until it gains meaning in her life, but GemIIni has made it pretty easy to do that.)
So, for right now, I am pretty hopeful. I have a lot more to share with you and will do so in upcoming blog posts in my TMR GemIIni series. I realized while writing this how much I’ve learned in only two weeks, and that knowledge of many different features and strategies actually made this a difficult post to write. In my eagerness I want to tell you everything all at once. But I managed to restrain myself! In upcoming blogs, I will show you some unique features of GemIIni such as team members being able to log in and use it along with you; a surprisingly responsive customer service team; a secret Facebook group; advice for echolalia, apraxia, scripting and more. I will give you a bird’s-eye view of our journey as we go, including pictures and videos of where we are at, and I will be sure to include challenges, troubleshooting, school issues, tips and anything else that might be of interest! In the meantime . . . thanks for joining us on this journey!