Happy Birthday, Elmo!

Today is our favorite furry red monster’s birthday. I can hear the Elmo’s World music in the background and his signature laugh as I am typing this. Anybody who knows Erika knows that she is addicted (yes, addicted!) to Elmo’s World. (For more information about Erika, and her life with Autism, visit Erika's World.)

I thought this would be a great opportunity to share some fond memories from Christmas, 2007. Erika was six years old. Erika has always taken Christmas morning in stride. While her same-age siblings are consumed with excitement well over over a month in advance of the big day, Erika typically shows little emotion about the whole ordeal. But Christmas of 2007 was different. Erika woke up that morning and, instead of being directed to check her stocking, she noticed that Santa had somehow managed to deliver a goldfish to our house. The first words out of her mouth that morning: “DOROTHY!”

Erika meets Dorothy

Erika meets Dorothy, Christmas 2007

And, of course, Santa would never have sent Dorothy to our house without her favorite furry red monster to keep her company. I can honestly say that it was Erika’s best Christmas ever.

Erika opens Elmo

Hello, Elmo. Erika's so happy to see you.

Happy Birthday, Elmo.
Erika loves you.

-Erika’s Mom

Posted in Behavior, Communication, Elmo, Sesame Street | Leave a comment

Pancakes and Syrup

This weekend, I made pancakes. At our house, since we want to eat them while they’re hot, we find ourselves eating them in shifts. One of the kids put placemats on the table, and a new bottle of syrup. Erika was the first kid I served. She sat down, and I noticed that she was struggling to get some syrup out of the container, which was still sealed from the grocery store.

I said, “Oh, sweetie, there’s another syrup in here that’s already open.”

Erika immediately got up and returned the new bottle of syrup to the pantry near where I was flipping the next batch of pancakes. She looked around, but didn’t find what she was looking for. I came over, and found the opened syrup bottle behind a few boxes of cereal. I handed it to her, and she poured her own syrup.

As I continued with my pancake-making prowess, I considered the very remarkable thing that just happened.

I didn’t say, “Erika, no.”

I didn’t say, “Erika, put that back.”

I didn’t run over to the pantry and switch out the unopened syrup for the open bottle.

I said, “Oh, sweetie, there’s another syrup in here that’s already open.”

And she “got it.”

She knew that the word “sweetie” was referring to “Erika.”

She knew that “another one already open” meant “please put this one back” AND “use this one instead.”

It was a reminder to me that sometimes we dumb things down when speaking to Erika to ensure that she will understand. Because she gives us very little verbal feedback, it is often difficult to know how much she really understands. But I’m convinced that she really does pick up on more than we give her credit for. It’s a reminder to me never to allow others to speak about her in her presence, as if she’s not there.

She is there, and she understands.

-Erika’s Mom

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Posted in Communication, Speech, Speech/ Communication | Leave a comment

Social Stories: From Clunky to Slick and Accessible

I was playing around with the Erika’s World website from my iPad, and I decided to check out the pdf documents containing the lyrics to some of Erika’s favorite songs (strategies that work). When I opened the document on the iPad, I noticed an option that appeared on the top-right of the screen: “Open in iBooks.” What happened next literally made my day. The pdf document appeared on a bookshelf, in a library separate from the iBooks that I had purchased. This is my very own library of pdf documents!

In Erika’s mom’s world, the significance of this cannot be overstated. I realize that at Erika’s school, there is no wifi access, so this concept of accessing these pdf documents from the classroom at a moment’s notice from Erika’s iPad is truly a novel idea. I immediately opened all of the lyrics, and they are now in a library on my iPad. (Note to self: I need to rescan some of these, as I noticed that a few of them are missing a page.) When Erika arrives at school today, I hope the teachers take a look at her iBooks app (per my note), where they will find the lyrics to “I’ll Show You The World.” Erika and I sang this together this morning, as we viewed the lyrics in iBooks.

These documents were created using the Writing With Symbols 2000 software. They took quite a while to create, but this is a format that the schools have been using for social stories, and Erika has been seeing these types of PECS symbols paired with words since she was two years old. On one hand, the software is amazing. It has text-to-speech functionality. But it is also very clunky, and I was absolutely shocked to discover that when the document was finished, I could not save or export it as a pdf document, or any other type of document (such as a Word document). After the time that went into making these, the lack of options was discouraging, to say the least. This left me with two options for sharing it with somebody who didn’t have the Writing With Symbols software. Option #1: I could do a screenprint, and compile the information in another program, or Option #2: I could print the documents and then scan them to create pdf documents. I chose Option #2. I am a bit spoiled on the technology end. Instead of being grateful to have a printer and scanner on hand, I was cursing the software that was driving me to do the unthinkable: printing out documents for the sole purpose of re-scanning them to make pdf documents. Now that I can see them beautifully displayed on the iPad for instant access at any time in iBooks, I know it was all worth it.

This opens up so many possibilities for us, to create social stories which can be accessed anywhere via the iBooks library on Erika’s iPad. So now, I am wondering if I should stick with this tried-and-true (but oh-so-clunky) software, or if it’s time for an upgrade of some kind.

To streamline the process, there are apps for the iPad which allow you to make social stories with photos. Stories2Learn got mixed reviews, but for $13.99, this is definitely worth a try. You can add your own audio, so the story is heard in mom’s or dad’s voice instead of the computer’s voice. I know that some kids have trouble generalizing, which is why the PECS icons may be preferred over specific photographs. But Erika seems to be pretty good at generalizing at this point, so I don’t feel that would be a great concern for us. Here is an example of Stories2Learn in action.

For a larger investment of $49.99, there is the iCommunicate for the iPad App.   This looks like it might be less intimidating for Erika’s teaching staff than the ProLoQuo2Go, since it doesn’t have all of the hierarchy of speech to figure out. It actually serves a different purpose. This App is completely educator-driven: you can create choices, first-then boards, as well as picture schedules. It appears to have all the functionality of Boardmaker, without all of the printing and laminating, which is the best of both worlds for this mom. I have said it a million times since Erika’s diagnosis at age two: I am the mother of triplets. I have always had three kids in tow (plus my purse). In a perfect world, I would have also been lugging around all of the laminated icons, perfectly organized in binders with  strips of velcro, and available at a moment’s notice. But that has never been my reality. I say we move forward with this one. If you own stock in velcro, this may be a great time to sell it!

While we are on the subject of Apps, I found a great site called Apps for Children With Special Needs. A few Apps that I am considering for Erika include Tap & Learn and Off We Go, Going on a Plane. The Tap & Learn quiz mode may hold Erika’s attention and appeal to her wanting to fill in negative space (like a puzzle). It would help her to practice the spellings of these words. The second app is an interactive social story about flying on a plane. We are at a point where we are considering the feasibility of traveling by air for a family vacation. Erika’s dad is quite concerned that her behavior would derail whatever plans we would make. I disagree. I feel that she is very content in a car, and the flight would not be a problem. We would have to keep her content while waiting for the plane, and we would have to keep her busy during the flight to minimize disturbing other passengers. My husband and I have differing opinions regarding how much “noise” is acceptable to subject other people to. I feel that with a little knowledge and understanding, other people should be able to tolerate Erika’s tone of voice for a short-duration flight. And with a little planning (music, earphones, a movie to watch), the “noise” would be minimal. This is new territory for our family, but the App would be a useful tool to prepare Erika for  a flight.

One more App that I discovered for Erika is the PegLight for iPad. It’s essentially a Lite Brite for the iPad. A Lite Brite that you can bring to school, or in the car, or to grandma’s house, without leaving a trail of colored pegs behind you. Of course, Erika’s not drawing any clever pictures yet, but she likes to fill in the entire grid with red.  Perfect for her, since she finds filling in negative space very calming. It seems like it would be just the thing to keep her busy on a flight (and we wouldn’t even lose any pegs between the seat cushions).

-Erika’s Mom

Posted in Apps for Autism, Apps for Special Needs, Autism, Communication, Speech, iPad | Leave a comment

Painful Morning

We’ve had quite a morning. There’s no warning as to when it’s going to happen, it just does. All was going well with the morning routine, getting three nine-year-olds ready for school. Erika’s bus comes earliest, about 7:45, so I start the final stage of “getting her ready” at around 7:25. Step 1: Give mom the iPad. (Mom packs the iPad for transport to school) Step 2: “Go potty.” (as Erika still calls it, despite years of adults, including me, trying to get her  to say “Go to the bathroom.”) Step 3: Socks on. Steps 4 through 9 include the option of snowpants on or in the backpack, then putting on boots, coat, hat, gloves, and the bus harness that makes her look like she’s about to jump out of a plane, once she puts her backpack on. But today, the thought of “Step 3: Socks on.” sent Erika into a tailspin.

Refusals, taking socks off and throwing them, kicking, hitting, screaming…there’s no telling how bad this will get, or how much time it will consume, so I have Erika’s siblings getting ready at the same time, but they are to get everything they need out of their lockers, and get ready in an area a ways away from their sister. The hard-fought sock battle lasts at least four minutes, and I make the executive decision that we are going to skip the snowpants this morning. One less thing. The next part requires the most courage of all: Boots on. Because with boots on, the kicking can get dangerous. After several refusals and much unbecoming yelling and some necessary physical handling, the boots are finally on, but every step of the way is like this, with Erika often choosing to lay down and kick, or take something off which I’ve worked so hard to get on.

Finally, she’s in the garage. The garage door has been opened, so we can watch for the bus. My God, I’m glad I haven’t showered yet, because I am sweating my ass off at this point. On Mondays and Wednesday, I have class at 9 a.m., so I would be showered and ready to head out after everybody’s on the bus. Luckily, today is Tuesday. She hits the garage door opener. It starts closing. “No. Don’t touch.” I hit the garage door opener. It opens back up. The sequence of closing and opening repeats twelve times, with my voice escalating each time, while I get my boots and coat on, and finally I stand next to the opener to physically block her from touching it.

She is agitated.

She lies down on the step just outside the entry door. She looks like she’s about to kick me, because I am standing between her and the garage door going down again. “There is NO KICKING.” I grab her raised boot. “Get up. That’s all dirty.” She doesn’t, so I lift her up, all 95-resisting-pounds of her. She lies back down, and kicks the door. “NO KICKING. GET. UP.” Finally, she gets up. She pulls down on the antenna on the passenger side of my minivan, as far as it will go. She lays her body over the salt-covered front hood. Just above the wheel well is a huge dent from a few months ago, a reminder to me of what Erika’s rage plus Lands End rubber-soled winter boots equals.

“Let’s wait outside.” Yesterday, Erika gave a small resistance when it was time to get ready for the bus. My husband was here, and he witnessed it. Once we were outside (with snowpants on), Erika amused herself with the sled and the small hill along our driveway. I was very grateful for her quick attitude adjustment. She was enjoying herself immensely, and I cheered her on with an occasional “Ready, Set, GO!”

But not today. Today, she doesn’t want to be out there. I pull her by her straps. I pull her by her backpack. She is resisting, but I need her outside. There is too much to kick here. There’s the door. There’s the car. There are my legs. She falls to the floor of the garage. Not the old carpet that we wipe our snowy, dirty boots on. She is lying on the floor where the dirty snow that clings to my car melts away, leaving a wet, greasy mixture in puddles. Now she’s a mess. Now I wish I had insisted on the snowpants. I pull her up, because she refuses to do it herself. I notice that she is sweating as much as I am. She still refuses to go outside, where she stands a chance of calming herself down. After all, sometimes the taste of a fresh handful of snow will do the trick. She runs to the other side of the garage, where she throws down her backpack and lunch. She kicks my left shin, and climbs into the red radio flyer wagon, which I once thought of as an icon of an idyllic childhood.

There is pain on my left shin. If I were a Dodge Grand Caravan, there would be a huge dent on my wheel well by now. There is pain in knowing how uncertain this day is, as the bus pulls up to our driveway. There is pain in knowing that many times, her best days at school start out just like this, before the bus arrives. There is pain in knowing that whatever I have planned for the day, I may need to drop at a moment’s notice to pick her up from school. I stand next to the bus as it pulls away. There was a moment when I thought she calmed down, but there is more pain as I hear kicking at the window where she is sitting, as the bus pulls away.

There is pain as I think about all of her love and affection this morning, before we got to Step 3: Socks on.

-Erika’s Mom

Posted in Autism, Behavior, Oppositional Defiance | Leave a comment

Welcome!

Welcome to my first blog post. Whether you are in contact with Erika every day at school, or you are a friend or family member, I hope you will find this blog to be a valuable way to stay in touch with the most up-to-date news in Erika’s world. Please check back frequently. You can access this page directly from the Erika’s World home page.  This is my first commitment to blogging, and I feel that it’s the best way to keep everybody informed for Erika’s benefit.

As I promised Erika’s teacher, I would like to share a link to an Elmo’s World segment (forward to 4:20) which Erika has been watching quite a bit lately. If you have spent any time with Erika over the last few weeks, you will undoubtedly recognize some of the phrases from this short clip, as Erika has been incorporating them into her repertoire of echolalia.

The video features a deaf boy named Alex. It is possible that she is intrigued by the use of signing. Signing was a popular communication strategy during some of her preschool classes, used between a few teachers and SLP’s and the nonverbal (or pre-verbal) preschool crowd. During the special ed preschool years, ASL got a lot of lip service but its actual use in the schools was quite limited. A person cannot survive on “more,” “milk,” “yes,” and “all done” alone. Because I had three late talkers, we invested in several Signing Time videos, and our use of signing at home far exceeded what the teachers were using at school (Erika’s brother used almost 50 signs before he started talking, shortly after starting his four-year-old preschool year).

Erika really took to the Signing Time video series, which did an excellent job conveying the meaning of the words (visuals, accompanied by the written word and many instances of adults and children saying the word). But signing fell by the wayside when Erika figured out that it really didn’t get her anywhere at school. What good was this secret language, which only her mom, her siblings, and the good folks from the Signing Time videos understood? In the following video clip, they use two of the many signs that she knows, the signs for “banana” and “milk.”

Of all of the Elmo’s World segments at her disposal on youtube, I find it quite remarkable that she has tuned in so frequently to this one which features a deaf boy successfully communicating, despite his disability. Do you think Erika’s trying to tell us something?

Echolalic excerpts: “Go Fish.” “That’s another way he finds out” (…what someone is saying) “We had bananas and milk.”

Elmo’s World – Ears (forward to 4:20)

-Erika’s Mom

Posted in Autism, Communication, Favorite Video Links, Speech Therapy, Speech/ Communication | 3 Comments