It’s the most wonderful time of the year … when you’re ready!
With Black Friday in the dust and December in full swing, many of us have started planning festive dinners, parties, gift exchanges, and get-togethers (even via computer screens!). With all the planning, we should be set for the holidays by the time they get here; and yet, every year, after all, is said and done, I always feel that I could have created more opportunities for my nonspeaking son’s participation, had I only taken the time in advance to think it through and plan for it. This year, join me in thinking about ways to make the holidays wonderful for everyone in the family.
*For the sake of better communicating some scenarios, I may use the name “Noel” to represent the non-/minimally/unreliably-speaking family member in this article.*
Nonspeakers feel left out of a lot of moments and conversations, even after they develop the fluency to communicate open-ended thoughts. As my friend Anna has said,
This can be painful. For a great majority of spellers and typers, the communication and regulation partner (CRP) is the point of access to full participation in conversation but unless they have a dedicated role as CRP for a specific time or event, they also attend the same events wanting to socialize. The question is: “Can good planning help to mitigate the pain of feeling left out while allowing everyone an opportunity to enjoy the holidays?”. After consulting with many nonspeakers about this topic recently and in the past, I am certain that the answer is “ABSOLUTELY!”. Planning ahead for inclusion and accessibility may not guarantee holiday fun, but it will benefit your nonspeaking, minimally- or unreliably-speaking loved ones, whether they’ve never used AAC, have emerging but limited functional communication, or even if they are fluent spellers and typers. Below, I have compiled suggestions, either made by nonspeaking and unreliably speaking friends or inspired by their comments, that may guide your own social planning for the season.
Tip: Reach out to the family and friends that will be spending time with you over the holidays to share some of these tips in advance – or share this blog! Most of our loved ones want to interact with our nonspeakers but they could use some help.
FOR THOSE WITHOUT RELIABLE COMMUNICATION
It may seem that very little can be done for those with no access to functional communication to feel included and welcomed at social events. This would be a beginner or someone in the “Early Acquisition” stage of S2C and other text-based AAC. Start with these strategies:
1. Presume competence. Respect feelings, emotions, and intelligence. Don’t presume “Noel isn’t showing any interest”, “doesn’t know what they’re missing” and therefore doesn’t feel hurt about being ignored. Noel notices everything! As my friend Aidan suggests above, a little acknowledgment goes a long way.
2. Use inclusive conversation strategies.
Canadian S2C Practitioner Monica van Shaik is also a Relationship Development Intervention (RDI) Consultant. Monica taught me about declarative language, which gives a name to a communication strategy that some people I know (like my multi-talented mother) are naturally good at, but it doesn’t always roll off the tongue for others (like myself). Declarative language invites the other person into the conversation yet places no demand on them to respond. It may not come naturally to some, but it can be achieved with some planning and some practice.
Another wonderful language-based strategy is to invite Noel into the conversation by adding their name to it from time to time. I admire the way my friend – whose son Andrew is happiest when his body is on the move – will chat away about whatever we’re talking about, and she often ends her comments or reports with a rhetorical “, right Andrew?”. For example, you might hear her say, “We spend every Christmas Eve going on a family walk through the neighborhood, right Andrew?” I love this! While her son engages his body by walking around the room or the backyard, she subtly reminds him and everyone else listening, that he is present, and he is also listening!
By using inclusive conversation strategies you will show your respect, but you will also model inclusion and presuming competence to others. They will likely be grateful to learn about good ways to connect.
3. Include purposeful motor tasks! My apraxic friends LOVE to assist with purposeful activities, especially ones that contribute to a joyful atmosphere. Purposeful motor isn’t easy, but it comes with practice. Take a moment to think about your family’s cultural holiday traditions, rituals, games, and duties, and start planning to maximize your nonspeaker’s participation in them this year. Plan ahead by talking about it with your nonspeaker, creating a regular schedule to practice the motor actions involved and sticking to it. Start with one or two activities and remember: where there’s a will, there’s a way. Some participation and inclusion are better than none, and if they’re good at it this year, they’ll be even better at it next year.
For example, I think I’m going to try this one: Our family has a tradition around the cutting of a new year’s cake (the vasilopita) with a hidden coin in it. Names of family members are called out as their dedicated piece of vasilopita is cut and served out to them. The owner of the piece with the coin baked into it is supposed to have a lucky year ahead. I’d never considered allocating a role in this tradition to my nonspeaking child. The truth is, if this responsibility is thrust upon him “in the moment”, it may not go over well; however if I plan ahead and we can practice the motor behind, we increase our chances at success. We will a) brainstorm all the ways he can participate and pick one goal for this year (will he help his yiayia cut the cake?; program his AAC device to call out the names?; hand out pieces of the vasilopita to family?; any of these tasks can be broken down and rehearsed many times until New Year’s Day.). 2. Plan the motor steps together (if there’s no reliable input from your nonspeaker, use declarative language and write down steps and some keywords). 3. Practice, practice, practice. If needed, use hand-under-hand prompting at first, which is the respectful and empowering way of teaching the motor. 4. Bring up some of the things that can be expected during this time (like reactions from family members) and even the unexpected that might (for instance, in my example, some people refuse the cake). Talk about what might happen and do what you can to avoid surprises.
What special traditions does your family have?
4. Give Together. If participating with a larger group is still tough, enjoy the beauty and spirit of the season at home when it is quiet. Inviting your nonspeaker to be a part of your giving process over the holiday season is a great way to do this. Every nonspeaker I have met wants to help other individuals. Volunteering time to look for goods to donate and drop off, or coordinating packages to brighten the holidays for someone in need is never a bad idea. Your nonspeaker may also want to create gifts to give to others. Document these good deeds and share them with loved ones during the holidays.
FOR EMERGING COMMUNICATORS
Emerging communicators, such as “Late Acquisition stage” spellers in S2C, and other AAC users that can reliably communicate basic greetings and needs with at least one CRP and can answer short open-ended questions, should always have opportunities to use their preferred communication tools. For them, you can plan as follows:
1. ALL OF THE ABOVE SUGGESTIONS FOR BEGINNERS; AND
2. Fill in the blank/short open-ended responses. If the speller has developed their fluency enough to spell in front of other people and in environments outside the clinical or “spelling practice” settings, then you may plan to have them participate in conversation or traditions using their developing AAC skills. When prayer is offered, festive songs are sung or poetry recited, inviting the speller to finish a line with a word (for instance, spelling “Amen”) is a way for them to contribute meaningfully. How do we plan for this? You could discuss the idea with the speller, teach or review the prayer/song/poem (following an S2C lesson format works well), and decide on the line or word where they will be asked to contribute “live”.
It may not be a good idea to try this with someone making their spelling debut in front of family during a big holiday party, but you know your speller. If they are up for it, make sure that their sensory needs are taken care of, and check if they’d prefer to turn their back away from the other guests while spelling.
3. Semi-opens and reliable selections. If a speller’s accuracy has developed enough that they are doing well on a full alphabet board, you could ask them to participate in planning out some holiday traditions, like selecting dinner menu, gifts, music, etc. If they can manage short open-ended words or phrases, this part can be easy; if their accuracy and fluency is not ‘there’ yet, present a few suitable options. To ensure no confusion of the speller’s intent in making choices, offer options where the first letter in each word is farther apart from the other choices, on the 26 letterboard. It would be easy to distinguish intent if the choices are Asparagus, Yams or Potatoes because the letters they start with aren’t close together on the board (see below). But if the choice is Mashed or Roasted potatoes (M is directly above R on the board), you will want to make sure the speller has reliable accuracy; if not, you might want to get creative in how you present the options to your speller.
FOR FLUENT SPELLERS AND TYPERS
Many of us look forward to a time when, as Divyesh has imagined, that
Until such a time, even fluent spellers who have worked so hard for accessibility, continue to spend a lot of time waiting for their access to communication in the form of a CRP. When they have it, they really can experience access, autonomy, and agency.
Here are some ways to optimize their participation in these holiday traditions:
1. ALL OF THE ABOVE SUGGESTIONS FOR BEGINNERS AND EMERGING COMMUNICATORS! AND
2. Set reminders. During social events when you yourself are busy hosting or trying to relax, it can be easy to lose track of the time that your speller has been without a CRP and is able to communicate. Set a reminder on your watch or phone, decide on some cues to re-direct yourself, or think about visual reminders that would be effective for you – do whatever you need to do to remind yourself periodically to remove your social/guest/host hat and put on your CRP hat. If you aren’t the only CRP at the event, discuss with the other CRP and your speller, the times or circumstances under which you will switch roles. Dedicate that time to your speller.
3. Planning out the holidays together. For a fluent speller, there should be no limits to how included and involved they can be in the planning and participation of traditions. They can help plan out the menu, decide on what gifts they would like to give and to whom, or brainstorm new ways of celebrating. Surely there will be obstacles like tricky bodies reacting to sensory and emotional stimuli, and we should always be ready to accept that; otherwise, the only obstacle might be communication or motor support. If you set aside some time together as early as possible to plan out and practice new motor tasks involved, holidays can be enjoyed by all.
Spellers do get exhausted from too much spelling and socializing, especially with additional sensory demands on their bodies in social situations. Some would rather skip a lot of small talk and reserve their energy for bigger things. Let your fluent communicator tell you how much is too much. Check-in with them often to ensure that what they decided in the planning stages is still what they want during the event.
Ι-ASC Leadership Cadre member Giorgena Sarantopoulos lives in Toronto Canada, which is not too far from the North Pole. After a “curbside Christmas” last year, Giorgena is looking forward to spending Christmas 2021 with her whole family.