Sunday, November 15, 2015

The Next Step: A New Ipad

April 21, 2015

When we first moved here, we had a meeting with the new school district about Lilli.

In that very first meeting, (one of many to come) they asked me what we needed. The director of special education asked me if Lilli would need a communication device. She wasn’t just being nice, although she was extremely nice. She most likely asked me because the IEP, a legal document, stated that Lilli needed a communication device. 

Of course it is important to have this in writing. It means that the school district has to provide one for her. But… we had the NovaChat. So technically she didn’t need an ipad. She had the ipad for four years from the previous school district, but we had to give it back when we moved. I had asked the previous school district if we could please buy the school’s ipad to take with us when we moved. I figured, it's old, it's used, maybe they would let us buy it for a fair price. We had it for four years, and it felt like it was Lilli’s. But it wasn’t.

They said no.

I really didn’t have much time to waste lamenting about their decision and the loss of the ipad. What could I do? The answer was a firm no. I had to move on. I had to make plans.  

I took screen shots of as many of the speech app’s screens as I could until it felt like too many and I needed to stop. I took all the pictures and videos off of it and saved them to our laptop. I watched a few of the video clips and got sentimental about how far Lilli had come in the years since we had that ipad on loan to us.
This screen was used by the ABA therapist to ask Lilli questions. She moved the blocks around so they were never in the same place. She would ask, "What's your name? How old are you? What is your brother's name? When is your birthday? What does your dad do for work?" And Lilli would independently find the right answer and press it. This proves she can read. Or at least recognizes and reads these specific words that she has been taught.  I will stress that they practiced on this page a LOT. She was taught this and practiced it multiple  times every day with assistance until she knew it and could do it independently. Maybe this is one creative way to teach a child with autism how to read. 

I hope someone reading this might be a teacher or school administrator who has the power to change a student’s life like someone changed ours. It was a principal who looked at me and said all those years ago, “Well, that’s it. Lilli needs an ipad. Let’s get her one.”

That principal gave us a priceless gift. She gave Lilli a huge chance that we could not give her at that time. It truly was life changing.

I wasn’t sure if we’d be getting another ipad anytime soon. With moving, buying a house, and many other expenses we had at the time, there was no way we could buy our own ipad right away. It might be a long time until we could save up for one. Should we take a chance on a used one? I looked on Craiglist. What about a refurbished one? I looked online at Best Buy and EBay. What about insurance programs? I did not know if getting a used one without an insurance plan was a good idea. We had already been through that before, with one ipad put under a running faucet, and another ipad dunked in the bathtub.

It wasn’t just the ipad, we would need Proloquo2Go, the $200 speech communication app. Also a good strong case to protect the ipad, and a screen protector. This could all add up to well over $800, easily, depending on what type of ipad we chose.

Even so, I wanted to remember what it all looked like, in case we got another ipad and I wanted to program it all the same way again. I needed to document it all somehow.

The whole reason we got the Novachat in the first place (which was paid for by health insurance as medically necessary equipment) was in case we moved out of the district and we needed to give the ipad back. It was kind of like our back-up plan. And now it was actually happening.

I could not believe how much was on that ipad. There were hours, days, months of work put in by the therapists and the teacher and myself, making buttons, taking pictures of Lilli’s things and putting them onto new buttons. It took me a few hours to copy things and then research how to delete all of our information off of the ipad. I erased the entire ipad and put it back to factory settings. It was sad for me. It felt like a total loss.

All of these buttons? It takes time to make each one. It takes time to put all this stuff in there.
There was a lot of time put into her old ipad. There were hundreds of buttons. It all got erased.

Except that it wasn’t a total loss.

We had gained valuable experience. We now knew so much more than I ever imagined I would learn about using an augmentative communication device. This was yet another stepping stone. We were moving closer to our goal of Lilli being able to communicate her thoughts to us clearly. The only problem is, we didn’t know what the next step was. It wasn’t until we moved that I realized what the next step should be.

We needed another ipad.

I explained in the meeting about all of this, but I didn’t ask for an ipad. In that meeting, my focus was on something completely different: Lilli’s happiness. I know that it seems trite to want my child to just be happy at school. It almost seems apathetic. But we had just had a year of daily extreme unhappiness (crying, collapsing on the floor screaming or sobbing, refusing to work) with new teachers. I wanted Lilli to turn the corner and start fresh with a new, happy attitude. I wanted an ipad for her, but I wanted her happiness way more. So when the topic of the ipad came up, I didn’t say much. She had been using the NovaChat for some communication anyway. Only some. Better than none. She used it to tell us yes or no, choices of food for meals, sometimes she used it to tell us she had to go to the bathroom, and mostly she used it to make choices for movies and music. It was progress. She had learned about categories and using describing words and action words. She had used it to take to school and say hi and do show and tell. Her homebound teacher Leslie had used it for spelling and math. We had worked for a long time to help teach her about expressing opinions and making decisions with the NovaChat. 

It was progress.

Lilli had used the NovaChat for many purposes with her teachers and therapists. But still, I could not shake the feeling that this was not the best device for her to communicate effectively. It just wasn’t as easy to use as the ipad was. She couldn’t even turn it on all by herself like she could turn on the ipad. I was not sure what the answer was, but I was pretty sure it might be that we needed another ipad.
But this time it would be slightly different. I knew what we would need to do when we eventually got another ipad…  I just figured it would be a long time until we would actually purchase one.

The teacher scheduled a meeting with the speech, occupational, and physical therapists. It was not like any of the many meetings I had attended in years past. I'll tell you what it was not: I was not sitting there feeling…how do I describe this…like I was invited to be there and listen to others. Like the meeting was about my child but someone else was running the meeting. This felt different. They were there to listen to me. I almost felt like I was in charge of this meeting. The teacher had suggested that I bring my laptop as I had before, and show the therapists the videos I had of Lilli in therapy and school sessions. There were polite introductions, and then they all looked at me and waited quietly, ready to take notes. It was really unbelievable. 

I had the floor.

Where to begin? I told them some things about Lilli, they asked a lot of questions. I showed them pictures and told them what Lilli was like, things she could do, things that frustrated her, things she loathed. I turned on my laptop and showed them many short video clips in a row, most were about 30-50 seconds long.

Before the meeting, I went through years of video clips and chose the best ones to show what Lilli could do. These were my final choices. They were all about 30 seconds long. I was so glad I had taken these videos. There is no better way then to show someone what Lilli can do. Much better than telling someone or having them read something.

Some were videos of Lilli jumping, walking up steps, selecting category buttons on the communication device, learning to answer multiple choice questions on the ipad, and listening to music with headphones on.  There were others. 

I felt a little awkward at times, like, when do I stop? There is so much to tell. I told them about how Lilli does not like to be talked to in a baby voice, like she is a toddler or like she is dumb. We talked about her interest in fashion and her sense of humor. I told them about my frustration in not knowing what reading level she is on, and that there really were no appropriate assessments for Lilli.

And I told them that I believe Lilli will talk one day.

“I know it sounds crazy, but I don’t care what anyone thinks. I pray for this every day, and I just believe she will talk one day. I just do.”

They smiled politely and said nothing.

I appreciated that they were silent. There isn’t much to say about that. Not right now, anyway. It’s my dream. No one can talk me out of having a dream.

Then we talked about the ipad, and how far Lilli had come in communication over the past few years. I explained PECS…they had heard of PECS (Picture Exchange Communication System by Lori Frost) and seemed to nod like it was sort of familiar, but none of them had training with PECS. I mentioned Lori Frost, and one of them picked up a pen and wrote something down.

The speech therapist had heard of Proloquo2Go, but hadn’t ever really used it. I explained about how we used ABA to get Lilli to use PECS and Proloquo2Go on the ipad. The OT had heard about ABA but no one in the district did ABA or had been trained to do ABA.

The tech people were android people. No one knew about Apple products and no one had ipads here.
I wasn’t discouraged, I was kind of in that “It is what it is” frame of mind, focusing more on how to help Lilli transition into this new classroom and be a happy, willing student.

I never dreamed that they would buy Lilli an ipad. And then Proloquo2Go.

This is the email I got from the teacher about a week after the meeting:

I just had a conversation with Mr. [the principal] and it appears we will be able to purchase an iPad for Lilli’s use in the classroom. I will recommend that we buy the one with the most memory and features. I will need your help to recreate (as best we can) the iPad you used in SC that was so beneficial to Lilli.
This may take a few days but I wanted to share the good news.

I was blown away. Anyone who is reading this that might be in our type of situation should know that a small school district can do this type of thing. It is only a matter of the right staff member with power being involved with your child's education.

The past two school districts we have lived in were small, with good people in place. Not a ton of money, mind you. Just good people who knew about certain funding that can be used for this type of thing. Not a lot of red tape, not a ton of paperwork or meetings to go through. Just one teacher going to the principal and saying, “This kid needs an ipad. How can we get one for her?” and a principal saying, “Yes, I can find money for that, no problem.” When I tell people about our experiences, I usually get shocked reactions, and teachers in bigger districts say things like, “That would never, ever happen in our district. That is amazing.”

Why is it so amazing? Shouldn’t it always be like this for any student?

If you had a child, and they really needed something that could really benefit them in their education, shouldn’t they get it? Is it really just that simple?

If I hadn’t been a classroom teacher before, I might not have as much of an understanding of how things work behind the scenes. I know from experience that there are things that go on behind the scenes. There are budgets, there are people to please, there are legal issues, there are reputations, there is always a money issue. There are many many issues in school districts. I want to say that from a parent’s perspective, it is so refreshing when things are just kept very simple.

What does your child need? Does she need an ipad with a $200 speech app? Has it really helped her with school and communication in the past?  Ok. We’ll get one. Hopefully next week.

That’s a good school system. That’s meeting the needs of the child.

This is the next step in Lilli’s life. The teacher is going to give me the ipad next week to completely program Proloquo2Go by myself, since no one here knows anything about it. Then we will have a meeting with the speech therapist, and come up with goals for getting Lilli to use it. I feel that Lilli should not even see the ipad until it is ready and programmed. I will have to take it home and work on it when she is not watching.

I feel strongly that we should put NOTHING else on the ipad except the Proloquo2Go app. No Youtube, no movies, no games. Not at first. We learned from last time that these things are a distraction to Lilli. If she gets to choose between telling us something with Proloquo or playing on a game app, she will always choose the game app. It is too much of a temptation for her.

This ipad will have strict rules from the beginning. It will just be her voice. No other purpose. Nothing fun. Then she will have to use the ipad every time she wants something, to get what she wants.  We will use everything we have learned in the past four years, to make progress toward independent communication.

This is the next step. And it is the next chapter in Lilli’s story.

I think it's going to be a really good chapter.

No comments:

Post a Comment