Prologue: An Odyssey
Grandparenting a child with autism can be like standing on the bank of a rushing river watching a dramatic and traumatic scene unfold before you. Your grandchild, your child, and your child’s family are in a small boat on that river, trying mightily to stay afloat. You want to help them, but it is difficult to know how.
When your child’s family started this adventure, everyone had expectations of what was downstream. The boat was packed with provisions and supplies that they would need along the way. There would be unexpected twists, turns, and snags, but they were ready to deal with them. The river would not always be smooth. It would require a lot of strength and hard work to complete the journey. At least there were channel markers and helpful people to guide the way and keep the family on track. And when the family did get to the end of the river, they would look back on the journey and challenges with fond memories. When the child was born, they pushed off from the bank and started downstream.
In the first years, the journey was going according to plan. Your grandchild was generally healthy. His parents were overworked and tired, but that was to be expected. They had been paddling hard and making decisions that would keep the boat above water, navigating away from rocks and shallows, and pushing the boat back to open water when it got stuck.
At some point the river split into two channels. The current carried the boat into one of the channels, as it had numerous times before. There was no reason to be concerned. All channels eventually lead to the same place, right? But gradually things began to look troubling. Your grandchild was not talking like he used to. He was not playing with the other kids at day care and sometimes did not even look at adults. He was starting to make odd motions with his hands.
Your grandchild’s parents noticed changes also, and eventually began to paddle furiously against the current that was pulling their family toward some unknown danger. They may have kept quiet, preferring to deal with the situation themselves, or they may have been yelling for anyone’s help. Maybe there was a doctor that could offer a safe landing site? Maybe at least someone could tell them what was around the river bend, so they could know how to prepare and brace themselves?
Getting a diagnosis of autism can be like going over a waterfall. The child, the boat, and the family inside will survive the initial fall, but then are faced with treacherous rushing rapids. They are probably frightened and ill-equipped to deal with the new challenges and dangers. The family relied on some occasional guidance and assistance before, but now they are desperate. Going back up the waterfall to the relatively calm river above simply is not an option.
As a grandparent, you are standing on the shore wondering what to do next. The fact that you are reading this book indicates that you want to help. (Not all grandparents do want to help.) Should you stay on shore or jump in the water? Should you try to get in the boat, or would that make a crowded situation even worse? Should you run ahead and use your experience to warn them of hazards in the river that they may not see? Why did they follow that channel in the river and get themselves into this situation anyway? Other people on shore are also shouting advice and trying to throw life lines and tools that might help the boat. Should you do the same or just get out of the way?
A Christmas Party: Coping with Sensory Issues
When Micah was three, my daughter-in-law Susan called, “Could you escort Micah to his school’s Christmas party? Both Stu and I have to work”.
“Yes, I’d love to” was my eager response. “I want to help in any way I can”.
On the appointed day I drove to the parking lot of a one story school building. Micah wanted to run ahead of me, but I held his hand firmly, hoping not to slip on hard packed snow. We were just inside the door when he turned, and with a terrified look, tried to run back to the car. He was unable to express himself, but I knew crowds of adults with strange faces, loud voices and boisterous laughing were not part of his school experience. I carried his stiff, struggling body back into the hallway, and managed to remove our coats.
We were greeted by Mrs. Johns, his teacher. She explained the party program. “Go from room to room and do activities set up at various stations. You will find puzzles, building blocks, and pictures to color – all things Micah loves. The last room has cookies, drinks, and Santa Claus”.
“What fun”, I chirped, taking Micah’s hand.
Just inside the first room, Micah stopped, looked at a seeming wall of people, and bolted down the hallway. When I caught his hand, he pulled me into a room filled with large plastic toys and slammed the door shut. The room looked off limits for the day. It was quiet, and we were alone. Silently, he began riding little cars, rolling on large balls, and sliding down a small slide. He was happy, I was perplexed.
In a short while, a promise of cookies lured him toward the Santa Claus room. As we approached, he covered his noise-sensitive ears, blocking out laughter and conversation. Micah screamed when Santa approached him, and ran back to the off limits room, Grandma in pursuit. Inside our sanctuary, we ate cookies I had managed to grab, and calmed ourselves. I was also beginning to appreciate this place of refuge.
Suddenly, Mrs. Johns opened the door, “Are you having trouble getting Micah to join the festivities?”
“Well, it is not my idea to hide in here. “Yes, he is afraid of the crowd, and of Santa Claus. What can I do?” I was ashamed of my pleading voice. As a Grandmother, I had failed.
“This is my fault”, Mrs. Johns voice was consoling. “Micah is accustomed to following a picture map, or story board, as a daily routine. In all the commotion, it was forgotten. I will get it for you, if you would like it”.
“Please, yes! And, thank you”. Relief washed over me.
Mrs. Johns returned with a cloth upon which small pictures of activities and room numbers were attached to Velcro strips. Micah looked once at the first picture and room number, then was off, weaving around legs and children, to room number one. It was amazing! Activity one was completed, that picture removed from the board, then on to room two, and eventually ten. I merely watched and followed as my grandson darted from room to room. We skipped the Santa Claus festivities, donned our coats and left. Micah had enjoyed the party on his own terms. He was happy, and so was Grandma.
The Christmas party presented Micah with a number of sensory issues that I now know are common among autistic children. Micah, being three years old, was not aware that his behavior was in any way unusual. At that time, I was unfamiliar with many characteristics of autism and was at a loss about how to help Micah cope with the situations encountered at the party.
Everyone reacts to sensory inputs. The smell of cookies baking can draw us toward the kitchen, while the sound of fingernails on a blackboard may make us cringe and move away. Autistic children develop attractions and aversions to sensory inputs differently than neurotypical children. Sounds, smells, tastes, textures, and light sources that might be quite pleasant to most people can be unpleasant or even painful to an autistic child. You probably know someone who has an unusual like or dislike, for instance, for a particular food. Children with autism have likes and dislikes too, but they are often so unusual or exaggerated that they interfere with their everyday activities.
Similarly, everyone reacts to social situations as well. Remember when you were a kid? You would approach a group of kids younger than you differently than you would approach a group of kids older than you. Some people, groups, and situations seem to invite us, others make us want to get away fast.
People with autism, I am learning, prefer familiar places and social settings and may have a strong aversion to changes. Neurotypical people often have the same preferences, but it is raised to an extreme in autism.
When Micah approached his preschool on the night of the Christmas party, he was eagerly anticipating seeing the teachers and other children he saw there every school day. Instead, Micah saw people he did not recognize and it made him fearful. Through experience, I have found that Micah is much more at ease if he knows who will be in the room ahead of time. More information is always better. He likes to know the names and relationships of people. If names are not known, he likes to know something about the person (i.e. this person is a teacher, that person is a friend of your cousin.) Even if they are complete strangers, Micah prefers to be informed that they will be there, rather than encountering an unexpected person, group, or crowd.
Micah was anticipating doing the things he liked to do at school, preferably in an order he normally did them. While the puzzles, toys, and craft supplies were all there, they were surrounded by strange people and there was no order or schedule. Many people with autism need to have a routine. Disruptions to that routine can be very troubling. In Micah’s case, he can handle variations to his routines, but it is much better if the variations are explained to him ahead of time.
Micah functions much better when an activity is organized visually. It seems that he can do assignments if they are arranged and scheduled on a story board. Special education teachers use storyboards, also known as Picture Exchange Communication Systems (PECS) They consist of simple pictures, symbols, or icons that denote different places, things, people, and actions. Some examples are:
The symbols are arranged in order so the child can see what to do next and what is coming in the future. At school, Micah’s teachers make up a variety of these symbols with Velcro tags on the back and arrange them on a piece of felt. The symbols are arranged for a particular task (i.e. wash hands, then get cookies and milk, then clean up) or for an entire day (i.e. story time, then snacks, then play time, and so on.) At home, his parents make laminated storyboards that help with routine tasks, especially personal hygiene. The symbols can also be arranged into “to-do” lists or “first-then” boards to encourage and reward various tasks.
Micah was terrified of Santa Claus at the Christmas party, and that did not change as he grew older. Many children see Santa as a large, loud, strangely dressed, odd looking, and terribly frightening individual. I completely agree. The fact that Santa tries to buy affections by presenting children with material things only adds to the creepiness.
The crowd at the Christmas party also presented Micah with a loud, uncomfortable noise. Some people with autism have sensitive hearing. This may lend itself to unusual abilities, like musical talent, but it can also be a disability. In Micah’s case, loud voices, especially in unison, are particularly irritating. A crowd singing the National Anthem or even his family saying grace at the dinner table is very irritating to his ears, like fingernails on a chalk board. Most children, especially boys, love being in the crowd at a sporting event. These outings often ended early for Micah’s family with Micah crying in agony because of the crowd noise. Eventually Micah simply refused to enter a gymnasium or sports arena.
Micah also has an interesting relationship to elephant noises. He has loved elephants since he was very young. His room is filled with elephant posters, elephant models, elephant books, and a three-foot tall stuffed elephant. Yet, Micah cannot tolerate the trumpeting sound of an elephant. He watches television shows about elephants with great interest. But when they make a trumpeting noise, he runs from the room holding his ears. He then peeks around the corner at the television to see if it is safe to come back into the room. He has demonstrated this sensitivity at a zoo.. When Micah’s family visited the zoo inKansas City, the entrance was at the opposite side of the park from the elephants. Micah immediately announced “I can hear the elephants calling me” and pointed in the direction of the elephant enclosure. The background noise of parents and kids and some nearby birds were all other family members could hear. When they finally located the elephants, Micah approached the enclosure, holding his ears, with a visible combination of fascination and fear.
Fortunately, Micah’s sensitivity to certain loud noises has a simple remedy – earplugs. Micah’s Mom keeps a supply of inexpensive earplugs in her purse, ready for any occasion. At first he had to have an adult put the plugs in his ears, but he soon learned to do it himself, and he is happy when the plugs are available.
The loud noises and intense visual images in movie theaters can also be irritating. Many movie theaters now hold special screenings for people, especially kids, with sensory issues. The volume of the movie is turned down, the house lights are left on, and no one complains if someone has to move around or leave the theater. Interestingly, in recent years, Micah has always declined to attend these special screenings. Tolerating the noise of the movies seems to be one of his ways of proving that he is grown up, self-sufficient, and normal, although sometimes his discomfort is still obvious.
What can grandparents do?
Grandparents can be aware that children with autism may have extreme reactions to certain sensory stimuli. When other children may find certain situations mildly unpleasant, children with autism may experience genuine physical discomfort or pain. Ideally, the child’s parents should identify these issues to the grandparents if the parents can anticipate the situation being a problem. However, this is practically impossible, given the number of sensory issues that are often present. It can also lead to an unnecessary suppression of fun activities because the grandparents want to avoid a problem. A better solution is for the grandparents to be ready to react and cope with the sensory issues as they arise.
Grandparents can stock supplies that will help a child with autism cope with sensory issues. Some are common things almost everyone needs, such as sunscreen or sunglasses. Others are less common, like earplugs or disposable gloves for children with textural issues. Food issues and allergies are discussed in another chapter.
When taking a grandchild with autism somewhere, especially somewhere they have not been before, talking to them about what they will experience can be helpful Explain where you are going, who will be there, and what likely will happen. Hopefully, your grandchild will warn you if anything sounds unpleasant. Then you have some time to think of a solution or response.
Following a child’s established routines and schedule as much as possible can be beneficial. If a deviation is necessary, explain it ahead of time and make clear why it is necessary. Clarifying an upcoming situation more than once if possible, can save some stressful occurrences. Some children with autism receive verbal instructions and explanations very well, but some will not. Visual stories and prompts may work better. If you have a little bit of artistic talent or at least some ability, you could try drawing your own simple storyboards. If you want some help, there are many sources of symbols for common tasks, including:
Children with autism may refuse to do something for reasons that are not apparent, or for reasons that seem completely irrational. At times.no amount of preparation, bribery, pleading, or accommodation will change their minds. Is this bad behavior or just a product of autism? Every child and every situation deserves case-by-case consideration. But I find it is important to remember that facts and rules are often different for my grandchild with autism than they are for other children. At the root of the situation there may be very real sensory issues that are unique to one grandchild, but not another. There are therapies and techniques that can help people with autism overcome some disabling problems. But as a grandparent, with limited time with Micah, I need to learn to cope with his behavior as it is today.
The Christmas party so long ago was a huge learning experience for me. Because of the frustrations I dealt with that cold December day, I plunged into an ever unfolding adventure of learning more about the autistic mind.