Kim Rankin

@kim_rankin | contributor
I nurture, advocate, and write.
Kim Rankin

Teaching Your Child With AAC Device During Coronavirus Pandemic

Dear Caregiver, I am a mom who teaches her son at home. The current situation with the coronavirus pandemic in our country and the school closures do not affect our family like they would if my son went to school. My son has disabilities. He uses an AAC device (augmentative and alternative communication device) because he has complex communication needs. From my vantage point of spending years teaching him at home, I have three suggestions for places you might want to be in the days and weeks ahead. 1. Be present. During times of stress and change, all children need grown-ups to show up. They need attention. They need extra patience. Their world has suddenly turned upside down. Everything feels out of control when the normal paths of life aren’t the ones we can tread. Our children need their adults to be attentive listeners, engaged problem solvers and people who can regulate our own emotions. Children with communication challenges need all the above times two. The extra effort it takes for AAC users to communicate their needs and feelings requires more concentration and presence from their caregivers. Listen with your whole self. Respond in kindness. Suggestion: if there are two adults to help with the children, provide each other with breaks. When you are with your children, be 100 percent present. Set your phone down. Get on the child’s level. Be available to your children. 2. Be realistic with expectations. I have seen a number of social media posts expressing the thought that thousands of parents have suddenly become homeschoolers. Unless the COVID-19 pandemic has caused you to withdraw your children from school, you aren’t homeschooling. Homeschooling is a commitment to be fully responsible for your child’s education for an extended period of time. Don’t expect that of yourself right now. The teacher-student relationship in a homeschool setting is tutorial. If your child has been attending school, they aren’t used to that educational setting. Unless you, as a caregiver, have been a homeschool parent before, you aren’t used to that responsibility. Don’t expect more of yourself or your children than is realistic right now. Stay connected to your child’s school and teachers. Schedule time in your day to complete the work they assign. Find some fun, free, educational activities to do as a family. Trust in the role of play. Read a little more than normal. But don’t expect yourself or your children to complete eight hours of educational stuff at home just because they are usually at school for eight hours. Also, have realistic expectations about incorporating AAC and modeling into your daily life. I am not saying set aside the communication device and don’t use it. I am saying don’t expect yourself to become a speech therapist overnight. It’s far better to be present with your child and model language in ways that are comfortable and natural to your relationship than spend an exorbitant amount of time on the internet trying to learn a bunch of new skills or set up a complete AAC intervention program. And by the way — today isn’t the day to invest in expensive educational, AAC or homeschool materials and start down a path you had no intention of taking a month ago. A decision to homeschool should not be made abruptly, especially if your child has extra educational needs or receives therapy through school. Be sensible about your expectations of yourself. 3. Be consistent. There are going to be difficult moments in the days and weeks ahead. Being home together more than usual is new to you and your children. Look for the little successes. Celebrate the breakfast with no spilled milk, the morning of keeping the AAC device nearby, the afternoon talking together in the sun on the back porch. You can get through this by breaking the day into little bits of time and consistently doing the next thing. Do what you can with what you have steadily hour after hour. Skip the elaborate Pinterest project; color together on plain paper instead. End an activity when everyone is still in a good mood. Do a little more the next day. All of you need steady effort towards achievable goals. Be dependable for the duration. What would you add? Let us know in the comments below. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness Coronavirus and Chronic Illness: What You Need to Know 10 Face Masks People With Chronic Illness Recommend

Community Voices

School Cancelled? 3 Things to Help Your Child Who Uses AAC

Dear Caregiver,

I heard that school for your AAC user has been canceled for a few weeks. I am a mom who teaches her children at home. I have never experienced the exact feelings you must have woken up with this morning. But I am also the mom of a child with complex communication needs who uses an AAC device. My little guy has had frequent hospitalizations. I have experienced drastic interruptions to his and our lives. One moment everything is going as expected, and the next moment everything has been turned upside down. I get it.

As a homeschooling special needs mom, I’ve spent a lot of days at home. There have been the school days at home. There have been extra days at home due to my son’s unique needs during flu and cold season. Home with children for long stretches of time is very familiar to me. Here are three things that help me.

1. Get Dressed

This isn’t one day off school for snow. This isn’t summer break. It isn’t a weekend. It is a long stretch of weekdays in the middle of March that no one expected. The first and best thing to do every morning is to get dressed. Get your kids dressed. Your day will go better if everyone is dressed and ready for the next thing.

2. Make a Plan

You are used to a routine. There is a routine for getting out the door and to school. Children have a routine in their classrooms. You have a routine for work or what you do at home while they are gone. There is an after school routine. Routines must change, but the need for routine does not. Everyone will feel safer if there continues to be a pattern to your lives.Take some time this weekend to think about what you want your children’s days off school to look like.  What is important to your family to do everyday? Does your school have some online learning in place that you must fit in?  Do you have chores or an organization project you want to tackle together? Want to take some hikes? Start a garden? Read more books? Make a list of everything you might want to put in a day. Include screen time on the list if that fits your family culture. Write your plan down. Write your meal times down first, then fill in the gaps.A very general plan for our day might look like this:Get ready

Breakfast (7:30am)

Learning Time

Outside

Lunch (12pm)

Rest

Learning Time

Outside

Daddy Home – project or outside

Dinner (5:30pm)

Bath

Bed

Writing your new routine down means everyone will know what to expect. Draw little pictures if your child benefits from a visual schedule. This does not need to be elaborate or use your child’s AAC symbols. Paper, pen, and basic drawings work. A sun can indicate outside time.  A plate and cup can symbolize a meal. Also, don’t overstress initially about the details. You can brainstorm with your children how to fill your routine with specific activities. Will you use sidewalk chalk or take a walk during outside time on Monday? That decision can be made Monday morning at breakfast.

3. Prepare for Communication

Did your child bring their AAC device home for the break? Great! Revisit your home plan for charging and keeping the device available to you all day. We find having dedicated spots in every room to set the device helps us keep track of it.If you don’t have access to the AAC tools your child was using at school – consider printing a low-tech version your school’s core vocabulary board. Don’t have that? There are many online free versions that you can use. One I know of is Project Core. Find printable options here: www.project-core.com/communication-systems

Deep breath. Savor your Saturday. Think ahead a little to Monday.

You are going to make it.

Kim Rankin

Children With Chronic Illness Need Commemoration Too

The pediatric patient in the adult-sized body stands in the middle of the hall crying. He is surrounded by singing nurses and doctors. “Ring that bell, get out that door. You don’t need treatment anymore.” A nurse shoots off a confetti popper. Red, yellow and blue tissue paper flutter over the festivities. Kneeling beside the recliner nearby, I try to coax my son into cooperating with the nurse. She needs to wrap a sensor and small piece of tape around his finger to check his oxygen levels. “I wish there was a bell in our life,” I say, half under my breath. The nurse and I move on to another body part. Our joint attention focuses now on the blood pressure cuff and my son’s small calf. We are coaxing: “It’s OK, buddy. It will be quick.” We are encouraging: “Hold your leg still now.” We are lying: “We’re almost done.” We’ll need to check vitals again in 15 minutes. And 15 minutes after that. And repeatedly long into the afternoon. My son quit believing “we’re almost done” years ago in a different clinic with different people in different scrubs. Or maybe it was in the middle of a therapy session. I don’t know. But adults go on saying the same words. We go on expecting the words to be persuasive enough, or the child to be naïve enough, that the result is cooperation. The confetti nurse moves the curtain and comes into our cubical. From across the space she aims the popper at us and releases colorful tissue paper. My son tries to hide behind me. He isn’t easily persuaded; he doesn’t find the celebration comforting. At the end of the day, I will remember this as the saddest moment. Hours later, a nurse practitioner is in our cubicle. She explains Plan B — because an allergic reaction to the antibodies infusing into my son’s veins stopped today’s dose and the whole treatment plan. Plan B is less of the same drug given more frequently, but into the fatty tissue of the stomach area instead of the bloodstream. Plan B means the patient has less chance of a severe allergic reaction. Plan B is administered by parents at home. She explains Plan B. But I hear loudest what she doesn’t say. “I have 50 children doing this…” No, you have 50 sets of parents doing this to their child. “The needle is very small. You can apply some numbing cream to the skin first. Think about it and call me… we’ll want to start next week.” Does this woman have a child? Does she put a very small needle in that baby’s body weekly and monitor for severe allergic reaction? Surely not. She would not be so rehearsed, so removed, so repetitive if she did what she was asking of me. I try to keep the tears in my eyes, but they leak. I gather our things. I try to keep fear contained too, but it escapes as frustration toward the nurse who wants to talk about small needles, specialty pharmacies and limits of support to one training session. I put an equally frustrated child in his stroller. He kicks me. He cries. He wants to play the video game promised in exchange for getting today’s IV. I want to leave. “Skip the bell, there’s the door, you won’t get our help anymore.” There was no gathered circle of singers. The confetti has been swept up. Fleeing pauses for an elevator. We are both crying. Mine — dread. His — disappointment. Mine — dismay that I disappointed him by not taking time for video games because there was no longer a medical reason to be in the clinic. For a brief moment, I am mentally in the waiting room of the therapy center my son visits three hours a week. I am observing another ceremonious placement of a painted hand on the wall. Handprints and accompanying signatures surround me floor to ceiling. They forever mark the graduation of children who run out the door with a commemorative t-shirt. Bells and confetti. Handprints and t-shirts. I long for such commemoration. Yet I too have bought into the belief that it is the finishers who deserve celebrations. I missed an opportunity to celebrate my child’s success in tolerating an IV and mark it by allowing the video game. Like new therapy goals that quickly replace accomplished ones, the allergic reaction moved the “we’re almost done” target and changed the expectation of child and parent cooperation. For now, I try to believe the “we’re almost done” lie. But we’re not almost done. We are chronic illness. We are complex medical conditions. We are not finished, graduated or celebrated. There is not room on the handprint wall to laud the accomplishment of the child expected to return for years. There is not singing in the bell hall to extol the parent and child who will start plan B next week at home. And so my son hides from confetti.