making a case for AAC

After a long stint on the wait list, we finally started our very first Early Intervention social playgroup today. (By “we,” of course, I mean me and Hammy, because poor Chicken has been laid up with a fever.) The goal of playgroup, from my & M’s perspective, is simple– give the girls a piece of the classroom experience, complete with circle time and snack time, to start preparing them for the preschool transition the day after their third birthday. We first explored this option right around when they turned two, but since we had just begun ABA about two weeks earlier, I decided to hold off and give them some time to adjust to ABA first.

Today, I entered the room with Ham in tow and a fair bit of apprehension. My conversations in the weeks prior with our developmental specialist had been a mixed bag when it came to the topic of Ham’s iPad.

Here’s how the group works: it’s a small group, just four kids, with three adults. The goal is for the kids to get close to 1:1 support. The group of kids served by the group are either on the spectrum or present with enough overlap in behavior and developmental abilities and need that they will benefit from intensive language and social support.

The group uses PECS (Picture Exchange Communication System), which are little 2×2 laminated squares with pictures on them, to give the kids choices. Crackers or animal crackers, Wheels on the Bus or Five Little Monkeys, etc. I’m fine with that for Chicken because it’s one of the things she’s using in ABA right now, but Ham? Ham has her iPad. Her ABA team has adapted a pseudo-PECS program for her using her iPad and have worked with us pretty diligently to figure out a way to incorporate this piece of equipment.

Early Intervention has been a bit less flexible. Our developmental specialist (who, I want to say, the girls absolutely love) doesn’t incorporate it into her work with the girls. In her defense, she does focus a lot on what is almost a speech therapy approach and encourages vocal imitation and signing. On occasion, I’ll sit with them and encourage Ham to occasionally comment on what she’s playing with or what song she’d like to hear next.

Group is a less controlled environment for us. I can sit at my own living room table and be involved in EI appointments, and I can work with ABA to modify Ham’s program, but group is group. Once these first few adjustment weeks are over, I’ll be leaving the room and sitting on the other side of a one-way mirror.

When I broached the topic of using the iPad instead of PECS for Ham, our developmental specialist (who is one of the three professionals running the group) was very hesitant. She said it really wasn’t how they run the group and would be difficult for them to manage because they weren’t familiar with the program, but that I could talk to the speech therapist who ran the group with her.

Today, in group, I showed the iPad to the speech therapist. She sighed. “You know, I just think it’s going to be so hard for the other kids. They’re really going to want to play with it.” When a little boy– the only other child there, as the group of 4 was temporarily whittled down to 2 due to illness– came over and grabbed at it, she sighed again and looked at me with something that resembled “I told you so” mixed with pity. She stood up a few minutes later to join the group and told me, “You’ve given me a lot to process. I don’t think I’m going to be ready to use the iPad today.” (I did manage to sneak it into snack time, but because Ham was a mess by then and refused to eat her food or even allow the iPad near her, I don’t think they saw it as a successful communication tool.)

Otherwise, it really was a nicely run group. The routine is very clear, there’s a lot of movement and singing, and it’s very language-oriented. I think it will be a solid introduction to the classroom experience for my girls. But… what of Ham and her adaptive equipment?

iPads as a communication tool are relatively unfamiliar to most people, especially in the “under 5” age group. Most people don’t realize it’s an option for a nonverbal toddler; more people still probably aren’t yet willing to apply a label like “nonverbal” to a child so young. Really, Ham only just turned two and a half a week ago. Most parents with nonspeaking two and a half year olds are still waiting, albeit with a bit more anxiety, for those words to suddenly pop out in a language spurt. (For some kids, they do.)

Ham’s expressive language skills are somewhere in the realm of what a 6- to 8-month-old can say, with the exception of the fact that she has one word: “yes,” which she pronounces like “syom.” She has very, very few sounds that she can make. Most of them are delightful little sound effects that punctuate her play– the excited happy squeals she makes as she runs back and forth in hallways, the “eeeee” when she’s frustrated. Her tones vary like a newborn’s cries and they all mean different things. It will take her a long time and a lot of effort to begin to make up the difference and start to build up a sound repertoire anywhere near what she’d need to have spoken communication be a viable option for her. At this point, no, she is not going to physically be able to wake up one day and just start talking like I’ve been secretly hoping she would. We don’t know if it will happen at all, really.

So what does it mean for her when we restrict her access to her iPad?

Think about a child in a wheelchair who wants to attend a playgroup. What if the professionals running the group aren’t familiar with how to help a child in a wheelchair navigate a classroom? They’d have to do things like move a chair out of the way for him to sit at the table with his friends– maybe even push a higher table up next to the low snack table so he’d have clearance. Maybe they’d have to move a bit of furniture so he could move around the room and have access to all of the materials. They’d talk to his parents about what specific needs a child in a wheelchair might have. They’d ask some questions, learn, and adapt, right? Because no reasonable adult in the position of working with children with special needs is going to tell that child’s parents, “Leave the chair outside. We’ll plop him down on the floor in the middle of the room and I suppose he can crawl around a bit and get to whichever toys he can reach.”

Today I had to severely limit the vocabulary accessible on Ham’s iPad to three options: EAT > GRAPES, EAT > CHEESE, and DRINK > WATER. I took away all of her other food options, drink options, words like HELP and YES and NO and MORE and WANT and SAD and TIRED and ALL DONE. I cringed as I did it. I was accommodating the professionals and not my daughter. I was asking my two-year-old, in a brand-new environment in which she wasn’t fully comfortable, to scale it back so the adults around her didn’t have to work so hard to manage her presence in the room.

I watched her from across the room, frustrated and tired at the snack table (and, as we found a few hours later, about to come down with her sister’s fever). I saw her little finger stab at the place where “PLEASE” used to be– the menu that houses ALL DONE. I saw her try to type NO. She couldn’t, because it was deselected and melted into the black background. She shoved it away.

Stay with me in this moment briefly– a two-year-old, whose verbal skills rank in the 2nd percentile but who can express things like “I WANT RAISINS PLEASE YES PLEASE MORE” when you put a piece of equipment in front of her that she’s only been using for four months, is having to operate on a limited vocabulary and can’t access all of the words she wants to use, because her mother is hoping to convince the professionals around her that the iPad is really, really easy, I promise, SO EASY to use, just try it. So instead of being able to type “NO, ALL DONE,” Ham got upset and shoved it away.

“I think she did well for her first day,” our developmental specialist said. In my head, I added, given the circumstances.

That’s the thing about AAC devices and young children. I don’t think people see them as necessary adaptive equipment. Sending Ham out into the world without her “words” is like sending someone out with duct tape on their mouths. Managing a child with AAC in a playgroup is potentially troublesome to a professional for an hour– and in a group with three adults and four kids, I think issues like “the other children will try to grab it” can be easily managed with the sort of oversight that ratio will accommodate.

For them, it’s a job. For Ham, it’s her whole life. It’s everything.

It is the one solid means of communication that she has with the world outside her family, where we understand her various squeals and whines.

It is the only way she can tell us what she needs, not just that she IS in need.

It’s her voice. We can’t take it away from her. I feel guilty enough that we don’t always remember to make it available to her. I can’t fathom the concept of having to fight to get professionals– who understand her language and developmental challenges, who have to obtain yearly continuing education credits and learn about things like how adaptive equipment is important for children with some disabilities– to even start understanding and valuing its use.

(Of course, I was going to go to a local adaptive equipment meeting/conference type thing tonight but, as previously mentioned, the double fever hit our household.)

Ending on a positive note, because I feel like otherwise I’ll just be trailing off… here’s our sweet Ham, wearing her current favorite shirt. No, really, she grabs it out of the laundry and drags it around the house. I don’t know why.

 

 

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Just want to say, before we’re done here, that I really do respect and appreciate the work EI has done so far to help my girls access the services they need. Our program coordinator is someone that the girls really look forward to seeing– Chicken in particular really lights up when she comes to play. I think the issues here have more to do with the overall experience of EI professionals. They have limited time, resources and staffing, and sometimes people in that position can have a hard time abandoning their standard approach to take on something new. It requires energy, effort and dealing with the unexpected– things they already do quite a bit in the scope of their work. I don’t want anyone to come away from this thinking EI is doing us a disservice. Really, our EI program is leaps and bounds better than most of what’s out there, even here in EI-pioneering Massachusetts. What’s really happening here is that I’m having to fight against a very strong tide to ask for best practice in a profession that has a rigidly defined structure and doesn’t allow its employees much wiggle room.

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5 thoughts on “making a case for AAC

  1. This paragraph got me… got me in tears that is: “I watched her from across the room, frustrated and tired at the snack table (and, as we found a few hours later, about to come down with her sister’s fever). I saw her little finger stab at the place where “PLEASE” used to be– the menu that houses ALL DONE. I saw her try to type NO. She couldn’t, because it was deselected and melted into the black background. She shoved it away.”

    Poor Hammy. Like you said, right now, the ipad is her voice. HER VOICE. The only way that she has and knows to tell those around her what she needs. To take that away from her to make it work better for the group? I am sorry, I just don’t think this is right. I haven’t done a lot of the therapy style sessions, but I can’t imagine how this would go over with Spencer, the young man we worked with who is completely non-verbal and uses his ‘talker’ (as we call it) to communicate. He isn’t two and a half. He’s a man now, big, strong, and knows what he needs/wants. I can’t imagine them telling him to leave his talker at the door. I mean, maybe they would.. but he would be furious.. why? Because he would be confused. Why? Because it is his voice and they are taking away his voice, just like they did to Ham. In my opinion, there is no way that ‘other kids will grab it’ is an okay excuse to take that away. Manage that! Yes, kids like to grab cool looking things… in any situation… someone just needs to control that, teach them not to, work on THAT, instead of just saying no after a few minutes. Arrrrg.

    This situation makes me so frustrated… and sad. I can’t imagine how frustrating that was for Ham and how hard it was for you to watch her. I really really hope the group decides they are willing to work with Ham and her ipad.. with Ham and HER VOICE.

  2. Watching Hammy on video with the iPad is inspiring. She’s so good with it and so confident in her expression of what she needs and wants. I’m sorry she can’t have that expression available to her all the time. Kudos to you too for being self-possessed enough to know what’s right for your girls and advocate for it. I suspect it would take ME longer than it should to snap to the realization that “Hey, I shouldn’t be accommodating YOU, adults!” I hope they come around for Hammy’s sake.

  3. Oh man, Jules. I’m already emotional today, and this post just brought me to tears again. I can’t imagine how frustrating it would be to have my words literally taken away from me like that. I’m so glad you are her Mom and so strong about advocating for her.

  4. That is so frustrating! One of Cadet’s therapists isn’t totally “on board” with one of Cadet’s ways of communicating (sign). It takes every ounce of my will power not to slap her when she discourages his use of it.

    Keep on advocating for Ham and her voice! Technology can be such a powerful tool!

    Just curious, what app are you using? I’ve tried several different PECS apps and not fallen in love with any of them.

  5. It’s so hard to try to expand the range of what is normal practice for some folks to include all the best practices. I hope the EI team comes around soon. A young man I know was nonverbal and had quite a few signs, maybe as many as 50 at age 4, and then he said his first word and everyone stopped signing to him because “he could talk” and it set his communication back so much to lose that avenue for expressing himself. He was a really grumpy kid for a while. Now he just talks (at 15) but I wonder if he wouldn’t be able to communicate better if he’d been allowed to keep signing and had been supported in that. Keep fighting for your girls. You’re on the right track!

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