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.

 

 

IMG_5783

 

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.

Advertisements

Mothers’ Day

After a rigorous workout on Thursday (my first in over a week), I found myself hobbling around the house for days. By this morning, the twinge in my back had spun itself into a full-fledged muscle spasm (I blame the Russian Twists). Cue agony! I was determined not to let it ruin my day, so I awkwardly ground my upper back into door frames all afternoon in an attempt to massage it out. That helped–temporarily.

Our plans for the day included a morning full of nothing while M finished up some legal stuff, then a nap for the girls before hitting a restaurant with my family. But the girls had had a long morning full of wandering the house, watching cartoons, and playing with bubbles and water in the sensory table, so they had too much pent-up energy to sleep on a sunny day with a warm breeze blowing through the house.

Guilt sidebar: I should have strapped on their “backpacks” (you know, the kind with long furry tails that are actually leashes. Don’t judge) and taken them for a walk. But my back hurt and I am still so gun-shy about taking them out alone when they immediately bolt in opposite directions, have no safety awareness, and infrequently respond to “no.” Sigh.

So without a nap, we dressed the girls up all pretty and buckled them in for the 25-minute drive to the restaurant. By the time we parked, Ham was fast asleep. She wasn’t too keen on waking up and spent a lot of time between my arms and M’s. Then we settled in at the table and my mom gave Chicken a bite of crab cake full of breadcrumb… two minutes later, Chicken flipped out. (I have an update post about our gluten- and dairy-free diet and how that’s been going coming soon.) she spent the next forty-five or so minutes vacillating between “screaming” and “looking sad and tired.” I brought her out to the car to nurse her, thinking she had a tummy ache, but then she cried for Nana. We returned to the restaurant and she only wanted me to hold her. Who knows. Thankfully, by then, Ham had been watching videos on her iPad for a while and was content, if a bit tuned out. This majorly violated out previous-stated “the iPad is for communication only” rule in a big way, but we were halfway to desperate by then.

While I’m flattered that the girls both wanted so much face-time with me despite having so many family members to choose from, the whole ordeal was hell on my back. By the time dessert menus were passed around, I knew that the girls and I had had as much as we could handle. We said some apologetic goodbyes and headed back out to the car.

I give M major credit for handling the rest of the evening. He got the girls ready for bed, got me into bed, ran to the store for a few essentials, and brought me back a heating pad and a gluten- and dairy-free candy bar, then took the dog out and did the dishes. What a mensch. That’s Mothers’ Day right there.

So though I viewed most of the day through a fairly moderate haze of discomfort, I have to say, I really have everything I wanted: two amazing kids, a brilliant and compassionate husband, a dedicated family, and great friends. So I’m doing okay. And that candy bar was really, really good. Coming out the other side of infertility is exactly as amazing and joyous as I could ever have hoped it would be, even on the not-so-great days. Incredibly, indescribably thankful for this life.

So here’s to the moms, the someday-moms, and all the people who care for them. ❤

20140511-223459.jpg

(Chicken and her Nana, two ladies who are right at home in a fancy restaurant.)