Interview with Karen Steele : May 2018
Karen Steel is the mother of Cody and they live in Australia. Cody has been an Avaz user since the past three years.
Avaz: Hi Karen! Thank you for joining us, for giving us an opportunity to talk to you today. It’s been great to hear that Cody has been using Avaz for a while and it’s wonderful. We’d love to hear the story of how long he has been using it and what was he using before that?
Karen Steele: So Cody’s been using Avaz for about 3 years now. Prior to that, we tried probably half a dozen, may be 6 or so different apps that were on the iTunes store - just trying to find something that he clicked with, and something that he found easy to understand. We had tried Proloquo2Go at his previous school, and we found that it just didn’t stimulate him; we couldn’t get him to engage with the programme that they were using at the school, not to say that he didn’t engage with Proloquo2Go, but that he didn’t engage with the way that it was set up on that iPad, that they were using with him. So, after trying half a dozen different apps, we found that a lot of them you couldn’t modify enough; they were very sub-standard symbols, we couldn’t upload photos, we couldn’t change the wording. Then we came across Avaz, and I found that it had all the modifications that we needed to the ultimate, so you could use the photos from the library, you could upload photos, you could change the voice , you could change the accent, you could change the background to be darker, you could change the size of the symbols; I just like the way that it was really easy to modify and that’s when we got hooked on Avaz. And once he started using it, we’ve never looked back and there is not another app that we would even consider using now. We just keep on doing what we are doing with Avaz and we just keep building up the library, each time we build, put a new symbol in, we just make sure Cody watches us doing it so he gets an understanding of why that symbol is suddenly there. And we make sure he watches and uses the app as much as possible.
Avaz: Whom does he communicate with using Avaz and what has been the impact for him in these 3 years that he’s been using it and how has it changed him?
Karen Steele: He pretty much communicates with everyone possible. So if we are at home, rather than giving him to just go and get something, I prefer to get him to use Avaz to communicate his wants or needs. It’s easier to show us the symbol, than it is to go running around the house trying to find something. So it’s just his communication tool that he uses with everybody quite possible. So at home he uses it with my husband, myself and his brother who also has autism but he’s high-functioning, so he’s got verbal skills. If we go to visit family, the first thing we always do it to get Cody to greet the family members with “hello”. And whoever they are, they’re usually in the People folder. If I haven’t got them in the people folder, and we are going to visit them especially if they are interested,I’ll just actually ask them to send me a couple of photos and I’ll make new symbols up.. it also gives us the ability to give him warning of who we are going to visit. So say we are spending 3 hours in the car, he’ll know who’s going to be at the other end, rather than it being a surprise. So, anyone we’re going to see, I always try and make sure their photos are in the People folder and at school they have the iPad with him all of the time so that if he suddenly needs to go the toilet or if he feels thirsty, they need to go into feelings or choices or whatever, he’s got the Avaz there. So pretty much, everyone that we associate with, has had some sort of dealings with Cody with his Avaz!
Avaz: It’s really nice idea that you are preparing him in advance when you go to visit people as well.What other environments do you use Avaz other than apart from home and school ?
Karen Steele: Pretty much everywhere; so if we were going out and we want to give Codey a choice of two separate things, sometimes it can be hard if we don’t have photos, or if there is not a symbol that reflects the environment that we want to go to well enough, it can be a bit challenging to prep one quickly but generally we have no issues; we just take the Avaz wherever we are going, it’s always just there, in case he wants us to understand one of his wants or needs. If we’re going to Mc Donald’s, for example, we’ve got the menu on there, so he can choose whether he wants a burger or some chips, or whatever the case may be. Then yeah, we’ve also started using the keyboard side of Avaz as well, to help him get to understand of how when we type in letters that they create a word so I’ve been getting him to work on his name a lot , so we get him to typing Cody and he is then trying to give a reply back to me so just trying to use that sort of it as well.
Avaz: Oh that’s great, so he is moving on to the keyboard now?
Karen Steele: Yeah. It’s going to be a slow progress to get him using the keyboard, but, at least starting with his name he’s just dipping his foot in and getting him to have a bit of a go at times using the keyboard side of it.
Avaz: So what kind of strategies do you use to kind of motivate him to communicate ?
Karen Steele: Hey, look, in the beginning, I think he found it easier just to go get an item out of the pantry say if there was a snack he was after, but now if I can see he wants something out of the pantry, all I do is give him straightaway to come to the iPad and get him to choose on Avaz. That way he also understands that if he goes to the pantry and can’t see his chosen snack in there then he can come tell me on Avaz, that i want this particular thing and i can’t see it. So I always try get him to use Avaz first, rather than going directly to the item, and it’s just a little private time, it’s just nice to rely on the program, on Avaz, on his little communication device.
Avaz: So does he do it of his own accord or do you have to get him do?
Karen Steele: Quite often, he is going straight to the device now, but if I can see he is walking aimlessly, and I can see something’s going around his mind but he’s not going to the Avaz, I’ll just prompt him over to it, and he’ll straight away go in and have a go at choosing whatever it is that he is wanting at that particular time.
Avaz: What are the other strategies that you’ve used to help him build his language, have you used something specific that has helped you ? 6:52
Karen Steele: we’ve done a little bit of work with symbols, and that still goes really well and it’s a lot easier to create a symbol on Avaz than it is to create an actual paper symbol.So a cardboard with the close to the banking at the end of the board. And they both, at the end of the day , have the same outcome, whether you are using a PECS or whether you are just using a symbol on Avaz. So we have definitely .. and we still to this day, we use PECS as well, if we need to, we talk about days of the week, both on Avaz and with the paper form as well. We have a board where we talk about what the day of the week it is, what weather it is, which prompts his clothes choices. So we’re trying to prompt him if it’s it’s going to be sunny and hot, to choose a tshirt for example, so we also use Avaz for that sort of thing as well. So going into the day of the week, so he knows if he’s going for school clothes or weekend clothes, what sort of weather we have in front of us.
And we talk about feelings and I always try and get him to say Good morning to everybody as well!
Avaz: I would also like to understand from you what would be your message to other parents who are looking for AAC. From our experience we have seen that many parents are skeptical about using AAC devices because they feel that their kids become very dependent on it ? What would be your message to them?
Karen Steele: I wouldn’t agree with that. I think if they’ve got a child who is going to excessively use iPad that’s purely upto the parents to control. I wouldn’t ever take an iPad away from Cody, and take away his ability to communicate, purely because i had a fear of him getting addicted to using an iPad. There are many kids out there who are excessively using ipads. Unfortunately a lot of that use has got nothing to do with communication devices. So look, I would say just give it a go; use the AAC - give your child a voice and help him to learn how to read symbols.
Before you know they will be learning how to make choices, and identify different images and what they mean and i couldn’t imagine Cody without his avaz now. If I just took this away from him , part of his world will be missing ; his communication device would be missing. We’re taking his voice away. Definitely .. And I couldn’t change from Avaz, I need to possess ..only because of ...its ability to modify Avaz , is exactly what we need, it gives us all of the modification tools that we need.
Avaz: Absolutely, you’ve hit the nail on the head, you couldn’t have worded it better. Because i think that’s exactly what parents would love to hear, be comforted by the fact that they are not making a bad choice with AAC. Another fear that we often find parents having is that it also robs them of the ability to try and attempt speech ? How important is that because often they wanted to delay introducing AAC to their children because they want to give them a chance to develop speech ? What would you say to that in terms of how important is speech vs developing communication?
Karen Steele:That is definitely a conversation to debate. Lot of people do have that belief that it will take away the child’s ability to learn or want to learn to speak.
I have a child who at this stage is totally mute and at we have to accept that at this stage he is not making any sounds.
So we have no hesitation other than to continue doing exactly what we are doing. We do a lot of verbal work with Cody, so with the iPad put away, where, you know, he can’t even see it. We do a lot of simple speech work, whenever he wants something out of the cupboard or dvd or whatever we use words to reinforce his choice. We will be going back to his speech pathologist concerned, who will give us a second opinion as to whether we are on the right track with Cody. is it possible We might be preventing his development of speech ? But I don’t. I think at the moment we are doing the right thing.. every symbol he touches is backed up with a word that he has chosen so there is constant speech reinforcing his choices anyway. I don’t think it takes away his choice of words, or the choice to develop speech or the ability to develop speech.
Avaz: Sometimes doesn’t it reinforce the speech and doesn’t it help develop his speech better?
Karen Steele: Well, not in Cody’s case unfortunately because he is totally nonverbal. But i just feel with the constant reinforcement of speech with all of the symbols that he chooses.. It’s not like he chooses toilet and it doesn’t say the word “toilet”, each time he touches toilet and it says “toilet”. So it’s constantly reinforcing the word anyway. Look, it is it is difficult to know, is there a possibility that we may be delaying the development of speech ? I don’t think so!
Avaz: But isn’t that more important to develop his communication rather than speech?
Karen Steele: Absolutely. Definitely, definitely. I think at this stage, in that a particular situation it’s more important to develop communication skills, than take those communication skills away that he’s got, in the hope that he’s going to develop verbal skills.
Avaz: Communication opens up a world of opportunities for them.
Karen Steele: It does. And it shuts down a lot if you take it away.
Avaz: Yeah. Anything else that you would like to add about your experience, what are the high moments in Cody’s life that you wish to share?
Karen Steele: Ah! Just now! ,..... About a week ago, and I didn’t think he was going to understand what that symbol meant. Just while you were on the phone, his Jumanji just ended and I was asking “Do you want something different?” and I gave him the Avaz. I always went into “Fun” and into “DVD” and he’s got lot of photos of different DVD covers, so he can choose which movie he wants to watch and he actually chose to play “again”. Which was actually asking to just watch that same movie. Which was actually a new symbol that he’s never used before. So that was pretty cool.
Yeah, that’s great. But I love saying “good morning” , you know, I like Cody saying “Good Morning Mum”, “Good Morning Mitchel”, his brother. You know that’s his way of greeting us. And I love that every morning, just sort of trying to get him to communicate his “Good mornings”. So yeah.
Avaz: Any other instances ? Some other high points that you remember?
Karen Steele: Yeah! Just going down to my sister’s house and wishing them Happy Birthday when it was my sister’s birthday. My sister just loves that when he comes down and displays emotion by using the Avaz to talk about a particular celebration whether it be birthday or Christmas; because otherwise he’s just walking without a voice and just not saying anything. He’s just there. Whereas this gives him the ability to say “Hey Aunty! Happy birthday” and yeah I definitely love that. So do my relatives; they definitely love when he just comes in and is able to say something and it’s usually through his own choice. He’ll actually choose what it is he wants to say to them. Even just to say “Hi” and find the photo of that particular relative usually it’s nice to put a smile on their face which makes him really happy.
Avaz: Very touching to hear that.
Karen Steele: I think my relatives are talking about my brothers and sister; particularly my brothers. I think they still find it complicated to get their head around having a nephew who is non-verbal , but I think they are really happy to see him and the effort we are putting in to make sure that Cody is made to communicate, and to make sure that he’s got a voice at this stage, which is through this communication device.
Avaz: That’s a great effort.
Karen Steele: Hopefully one day Cody might start speaking. In the meantime this is absolutely awesome, you know, the second best, for us.
Avaz: Giving him a voice, you are doing a wonderful job. We would love to reach your story to other parents. Thank you so much Karen! It’s been wonderful. Very kind of you to share your experiences with Cody at home and very heartening to hear what he is able to do because of that, and I think it’s a wonderful message you’ve also spoken about and also how you have been using it and i think it’s a great message to parents, because they will feel definitely more informed when they make a choice, because coming from another parent and their experiences, would carry a lot of weight for them.
Avaz: Thank you so much and have a great day!