For those of you that don't know, that's Lauren Pokuta in the picture with me. Lauren is an area teen who was in a very serious car accident last August. She sustained a brain stem injury that left her comatose, on a ventilator and with a feeding tube. As you can see, she no longer needs the ventilator and you probably can't see that she no longer needs her feeding tube (taken out the day before her 18th birthday in April!). Her dad says she "eats like a horse" and I've shared a snack with her recently and I'm pretty sure that I agree with him.
Back in November, 2011 a representative from Stay Strong for Lauren, a non-profit group set up to help the family with expenses, came to speak at my networking group, Business Women United Network. We watched a video and listened to the story and I can tell you for sure....that we were EACH touched in a way that day that we never expected to be. I had heard the story. My son went to the same high school so you instantly feel for ANY family that is part of your child's school community. This was different though. I can't really explain it and I'm not sure I need to. While I was watching and listening, I felt this STRONG pull to help but "what could I do?" Sure I could give money for the equipment she needed but I wanted to do more...and then, the woman recanting Lauren's story looked RIGHT AT ME and said "donations are needed to continue Lauren's therapy services." Ding. Ding. Ding. There it was and so I began a journey to find out exactly how I could go about donating some therapy sessions for her-which wasn't an easy task considering I needed to talk to my national organization, attorney, accountant and then approach the family. Somehow, it all fell into place though and so here we are several months later...I'm donating 8 sessions of speech therapy to the family.
Ahhh. Yes. This photo was taken at our second visit. Lauren does this thing with her mouth when she's being funny or not really sure she wants to do something you've asked her to do...and here it is...only you can see, I failed miserably trying to recreate it! We had a great laugh.
My place in Lauren's treatment is an interesting one. She has TWO other speech language pathologists on her case (one from the hospital and one from the school). The nice thing about this is that she has 3 different sets of eyes and levels of expertise on her case. I am still finding my niche with her and what I need/want to focus on but for now, we are working on breath support (because she is very, very weak here and does not vocalize consistently on command yet), comprehension, orientation to day/time, short term memory, and an alternative communication system. Lauren currently uses an alphabet board to spell out entire sentences to you. In fact, at our last session, in response to her aide saying "your dad is at work, well he's golfing." Lauren spelled out "that's not work!" Obviously her sense of humor is intact.
I picked up on Lauren's love of the iPad at our first meeting, mostly because she beat the pants off of me at UNO , but I feel that I have found my place in her treatment. I have always been the type of therapist that takes a desire or "like" and tried to help a client learn skills through that "like." This is no exception. Using the iPad we can do ALL of the things Lauren needs. Interestingly enough, I am the only SLP on the team who has this iPad knowledge-I don't think that was an accident though, do you?
Before our last session, I loaded 3 apps on my iPad to test with her. Let's just say, one of them was a HUGE hit and here is a video of her using it. It's called Brain Lab and it's marketed in the therapy community as being helpful for those with Traumatic Brain Injuries. Basically, you are timed while performing tasks for comprehension (adding, ordering numbers, answering questions etc..) Here she is on the second or third level ordering numbers from least to greatest...I can't remember which level she was on because she was so excited to try this and then moved so quickly through the first two levels I lost track!
I hope you stay tuned to my blog, for the next seven weeks, to see how we progress and get to know each other. I am excited to be a part of her treatment and am very pleased that the family is allowing me to share the journey with you. If you want to read more or perhaps make a donation, I am including her Caring Bridge and Stay Strong for Lauren links here. http://staystrong4lauren.com/http://www.caringbridge.org/visit/laurenpokuta
Thanks for reading! They won't ALL be this long.Jen
This guest post is written by Jenna Gensic. Jenna is the mom of a former client of mine for whom I recommended social stories to assist with transitions, learning activities and feeding. Sometimes, and this was the case here, it is a double edged sword to recommend something you KNOW will work for a child/family but that will ADD stress and time spent on "therapy." I was so glad when Jenna sent me a message this week stating that she had found an app that was alleviating some of the stress for them and I promptly asked her to write a guest post to share her new "treasure" with others. ~JenniferA Jumpstart
I sometimes feel compelled to relate my three-year-old son’s personal history to anyone who sees us in public. Like the cashier at Wal-Mart he won’t say “hi” to. Or the kid at the doctor’s office who points and asks his mom “What’s wrong with his legs?” Or the older woman in line behind me at the grocery store taking inventory of the high-sodium and high-fat junk food overflowing my cart. I avoid summarizing Mikan’s medical history in a brief courteous sentence, acknowledging to myself that it doesn’t do him justice, and, frankly, it’s fatiguing. But I’ll do my best for this post.
If my son’s life were a blog post, these would be a few of the tags: Micropreemie. Trach. Ventilator. NG tube. G-tube. Surgeries. Retinopathy of Prematurity. Ataxia. Cerebral Palsy. Autism? Sensory Processing Disorder. Oral Aversion. Feeding Disorder.
Over the last three years, my husband and I have discovered the power of social stories to manage Mikan’s behavioral problems associated with his complex medical history. Although Mikan hasn’t yet officially been diagnosed with Autism, his therapists and doctors have repeatedly discussed the possibility of this label. Regardless of the official determination, Mikan has responded well to social stories, an approach typically used with children on The Spectrum.
For over a year now, we have created stories with text and pictures both by hand and on the computer that introduce Mikan to specific social practices. A few of these included how to act at the dinner table, how to greet someone we know, how to share toys, and how to interact with different foods. Mikan loved reading about himself and looking at the pictures. Previewing behavior expectations and schedule changes reduced his anxiety and eased transitions.
While we were pleased with this intervention, like any other therapeutic strategy, it demanded extra time to be effectively implemented. I kept a special notebook for stories I needed to develop quickly. I used PowerPoint when I had more time. I was proud of my slide transitions, text animations, and integration of family pictures with clip art. I would call Mikan to the computer regularly to “read” the stories with me. He has a precocious ability to read and welcomed this routine.
But sometime in his third year, each passing month brought a new behavioral quirk that needed addressing. His therapists and doctors’ answer? Make a social story. So I made one. And another. And another. But I found myself using my trusty notebook more than the computer. It was simply quicker. I knew it wasn’t as effective, so I returned to the computer whenever I could find time. As the months passed, I burnt out. It took me about forty minutes to create each presentation. I was tired of making them. Realizing this would be a long-term intervention, I sought help.
We had purchased an iPad shortly after Mikan turned two to test some voice augmentation apps (He was still nonverbal.). We were fascinated by his progress. He quickly learned to navigate different apps and browse YouTube for educational videos. I wanted to harness his iPad interest and channel it into a social stories app. For months I conducted App Store searches, browsed lists of “Autism apps” distributed by his developmental pediatrician, and followed up on referrals from friends and health professionals.
I found many apps with stock stories such as Routines and Going Places. These apps contain pre-made stories with audio, text, and pictures that discuss a specific routine such as getting ready for school, going to the grocery store, or visiting the doctor. These are nice because they require zero effort. But I still sought an affordable app that advertised customizable stories. I wanted to make stories to address Mikan’s specific needs. I knew I wasn’t going to find any pre-made story about drinking from different kinds of cups when the special blue Rubbermaid cup is in the dishwasher.
But last week I found my Holy Grail: My Stories. This app is affordable ($2.99) and efficient. In less than five minutes, I can create a custom story with text, pictures, and audio that is available for my son to view whenever he wants, not just on my prescriptive times. Mikan loves turning the pages and tapping the pictures, and soon he will be able to record his own audio. In the past week, he has already reviewed the stories more than we have together at our computer over the last two months. And I’m not tired! I enjoy creating these stories because I know they will be effective and my efforts will not swallow up the limited free time I have every few days.
However, this is still a relatively new app. The current version only allows you to create nine social stories, but the developer plans on expanding this capability in future updates and seems committed to regular improvements. I’ve also encountered a few bugs that unexpectedly deleted a few of my stories. Hopefully these will also be addressed in future updates. Although, honestly, the bug only mildly irritated me since it was so easy to recreate my work.
My Stories has jumpstarted my commitment to this therapeutic approach with the level of intensity it demands. I’m excited to share it with other weary parents and caregivers. While I’m pleased these social stories will help mainstream my son and lessen my compulsion to explain his behaviors in public, I am more excited that they will support his comfortable growth in the world around him, increase his quality of life, and help him live out his human potential.
My daughter just asked if she could use my Ipad to play "More Pizza." As she was looking through the other apps by the same designer she came across several more that got my mind racing with ideas; More Salad, More Tacos, More Pie, More Chinese Food and More Ice Cream. She asked if she could download the More Salad app.....you already know what I said, right? She could have chosen More Cupcakes (probably what I would have chosen) but she chose More Salad! I think the green smoothies are working! Actually she has always been an eclectic eater (in kindergarten she would come home and ask for a cucumber and "a few chocolate chips" ) but the veggies and fruits have been her FIRST choices since we started the green smoothies two weeks ago.
As she was playing with this app, I of course starting thinking about uses for my therapy sessions. Obviously, using this app would work with older and younger children who are working on language skills; I want romaine lettuce, grilled chicken, tomatoes, cucumbers and Ranch Dressing (choice making, vocabulary building, colors, grouping like items etc or social/pragmatic skills "What kind of lettuce do you want? Do you want olives on your salad?) but it REALLY would work well for our picky eaters. I thought I'd try it out on my daughter. I told her to create a salad with two new things she's never tried before and "save" the recipe (really neat part of the app is that they can save, name and share their creations) and we would shop for the "fixins" this weekend and give it a try. Excited doesn't even begin to describe her reaction. "Can we do more than one?" I think I actually heard heavenly harps or maybe it was my beloved Harry Connick Jr......no matter, it was amazing whoever it was!
I just wanted to share this as I know the weekend is a time where you can "explore" some fun things and learn some new skills. I know I will be purchasing ALL of the "More _____" apps because so far, they have been well worth the .99! YES, you read it right....NINETY-NINE cents.
I am over the moon for this line of apps and I still can't believe how much the Ipad has changed my therapy and the enjoyment for my kids. We learn together and have so much fun. Sorry to all of you parents who are now being asked for "Miss. Jennifer's new toy (true story....got a text today from one of my moms)
So which apps are YOU going to get and how do YOU plan to use them? I'd love to hear your ideas and stories.