My eight-year-old and I prepare for second grade each in our own ways. Addie gets as many last swims and lazy days in as possible, while I program her speech output device and schedule some communications of my own.
Addie is diagnosed with Rubinstein-Taybi Syndrome that manifests, for her, in some physical, medical and cognitive differences. She is also functionally non-verbal. For background on her road to communication, see Outside Voice, Please!
Addie has been in a regular classroom since junior kindergarten. This is the best choice for her based on how she learns, what she is motivated by, and what her eight-year-old dreams for the future seem to hold. She attends a local public school with an inclusive vision. I get the feeling that Addie may be a trailblazer in some respects, but we do not have to “fight” for her to be a part of everything. We just have to educate on the how-to at times. Her classroom teachers work well with the special education teacher and aides to ensure that Addie is accessing the curriculum and the school culture with appropriate modifications and support. Investing in an honest and collaborative relationship with the staff and administrators was a focus for my husband and me from the very start of her school career. It continues to be a priority each year, all year.
Addie communicates in a variety of ways, including using her Dynavox V (a dynamic display speech output device), through American Sign Language and through tried-and-true or on-the-fly innovations of her own. Last year was particularly balanced between sign and her device. Her classroom teacher also happened to be a sign language interpreter who would have taught her class sign whether there was a signer present or not.
As we focus on ensuring staff see our daughter clearly and understand how she expresses herself, we also prepare Addie’s classmates for her communication and other differences. It’s important that Addie be able to reach a social common ground with the kids early on since it’s so much more difficult to gain after connections begin to gel that first month of school. We start each school year with three things to help move along the establishment of connections between Addie and her new classmates:
- Meet with the classroom teacher to discuss our plan
- Share with class parents some information and our family’s approach to Addie’s differences
- Visit with the class to address questions and alleviate confusion
Meeting with the Teacher
While the teacher has many ways to gather background on Addie–the teacher knows he or she will have Addie in class by May of the previous year, has the IEP and other information from her team, as well as opportunities to observe–we like to offer our own conversational ideas on what will help Addie make her best contributions to the classroom. This is a casual discussion that includes answering any questions and offering any resources or time the teacher might think would be helpful.
Some points I also include are that we are present and ready to be involved, that Addie adores school, that she needs to see the classroom teacher (and not her 1:1 aide) as the authority as the other students do, that social and classroom culture expectations must be the same for her as they are for the rest of the class (for example, she must raise her hand to share), and that keeping expectations high is what makes her want to reach high. Just like other kids, low expectations do not inspire her. I also emphasize that it takes a little time for her to communicate in any mode, so time to process is needed. It’s usually a pretty organic discussion as many of these points lead into other areas. I might also have some questions about how the classroom is run and what terminology is used. Then I can prepare her by using these terms myself and having them already programmed in her device by the first day.
I also give the teacher a heads up about the brief email we’ll send to parents within the first week of school and assure the teacher he or she will be copied on the email. In conclusion, I ask to set up about 15 or 20 minutes of time in the second or third week of school to help Addie’s classmates with some strategies on being a friend to a happy, clever girl who speaks in alternative ways.
Email to the Parents
As Addie is increasingly better known in her school, this email gets shorter with each year. The point is to say that we understand their kids may have some questions about Addie’s differences and to let them know that we are open people. We try our best to answer any and all questions in whatever vernacular is at the disposal of a young child at the time. To me, it’s important to assure parents that we aren’t easily offended in order to alleviate some hesitation to inquire about the things that make Addie unique. I do mention the primary diagnosis in case they care to look further into it, but assure them that we do not ever talk in medical or diagnostic terms with Addie’s friends, that we tend to focus on what she has in common with other kids more so than what is different.
From there, I offer a short and usually humorous list of the things Addie loves and the things she is best at. Then I give a brief overview of the ways she communicates and how that works in class. We give a heads up that the speech therapist will send home a permission slip. This slip will ask them to sign off on taking a digital photo of each child so I can add it and the child’s first name in Addie’s talker. I explain that this will allow Addie to call her friends by name to get their attention.
The email is a brief, upbeat shout-out meant mostly to confirm that we expect another fairly typical school year experience from Addie’s perspective and that we’re wide open to chatting at pick up and drop off times about homework, play dates, Scouts or anything that confuses their second graders about their friend Addie.
Visit with the Students
This one is my favorite. A few weeks in, I’ve already fielded questions at morning line up: But why can’t she talk? Can she hear? Why does she use the talker (what we call her communication device) sometimes and signing other times? What does it mean when she hums or growls (she makes a lot of sounds when not focused on something else)? What does it mean when she shakes her head back and forth or flaps her hands? What’s the sign for____________ (fill in the blank)? How do you get the words and pictures on her talker? Can I play with her talker?
The questions I get in the beginning frame what I share with the class in addition to my standard messages. The classroom teacher is there and all of Addie’s team is invited to listen, contribute or give examples. Some common questions addressed include:
“Can she hear?” She can hear you; she can understand you even though it may not look like she’s paying attention. So please talk with her like you’d talk with any friend. You’ll just have to wait a bit for her response if she plans to give one.
“Why can’t she talk?” I can’t say I know exactly, but of any action humans perform, talking uses the highest number of muscles and our brain has to send a great number of messages to all those different tiny muscles. Addie’s messages go a different route and her muscles work a little differently, so it’s tricky to get everything coordinated to get the words out. BUT she knows what she wants to say and her hands know how to get it out either through signs or through the device. Our job as listeners is just to ask the question or make the comment once and wait for her to take her turn in the conversation.
“Can I push buttons on her talker?” I’m sorry, not without her permission first. This is the sign for yes, this is the sign for no. You may not touch her talker unless you ask and you see the yes sign or she uses the device to say yes. I know it looks kind of like a video game, but it’s really an important tool that Addie uses every day. It’s important that she has it with her at all times and that she is in control of it.
Those are a few of the standard questions answered, depending on the grade and how many kids are already familiar with her. It is important to me that her friends from previous classes get to speak up about what they know on how to be Addie’s friend. There are some kids who are just dying to tell you about how they solved a communication barrier on a play date with Addie once, or how she told one friend happy birthday at a party. This stuff is golden for other kids to hear.
In the lower grades, we’d sing, “If You’re Happy and You Know It” but with other feelings and actions to explain why Addie might choose to do something. If you’re hungry and you know it sign like this, if you’re excited and you know it, FLAP your hands, if you’re bored and you know it, walk away.
After teaching some fun sign language that might be useful in the classroom or dazzle their families at home, the final part of my short visit is a game. Addie and I teach the class the signs for same and different. Then Addie uses her talker to tell things about herself. When she makes a statement, the kids sign same if that is also true for him or her or sign different if it’s not. Addie might say things like: I use a talker to communicate, I ride horses every Saturday, my friends are the coolest, I am a Brownie Girl Scout, my eyes are blue, I am a great swimmer, the Green Bay Packers are my favorite team, I have Mr. L for my teacher, and so on. Whatever order she chooses, the outcome is that they learn a bit about who Addie is and also learn that they have much more to sign same about than they do to sign different about. The kids come up with follow up questions on things they hear. Their natural tendency is to ask me about the horseback riding or whatever, but I turn them back to Addie and assure them they can ask her directly. We again end on an upbeat and open note that really, Addie’s just another second grader in Mr. L’s room.
So far, these three things have helped each year getting Addie’s school mates acclimated enough to her differences in communication. Then they can more quickly refocus away from what divides them and move on to new connections and maybe even lasting friendships.