AUT-2B-HOME IN CAROLINA ~ Teaching our twenty-five-year-old daughter with autism and aphasia, who is still learning about God, the world, and its people with a little help from Charlotte Mason
In God's wisdom, our Sunday school class read Isaiah 55 last week. Reading from this Old Testament book of the Bible in the weeks leading up to Christmas is quite appropriate because so many passages foreshadow the coming of Christ.
Come, everyone who is thirsty, come to the waters; and you without money, come, buy, and eat! Come, buy wine and milk without money and without cost! Why do you spend money on what is not food, and your wages on what does not satisfy? Listen carefully to Me, and eat what is good, and you will enjoy the choicest of foods. Isaiah 55:1-3
Many think the goal of education is employment, or working for food that spoils. Jesus knew that life is more important for he said, "Do not work for food that spoils, but for food that endures to eternal life, which the Son of Man will give you" (John 6:26-27). What kind of work endures? As we head into a new year, we might want to take a breath from busyness and consider what work brings light and life into the lives of others.
Last Friday, we read Tennyson's "The Dying Swan," so today, we discussed our poem for recitation ("The Owl") before finishing the last chapter of our science book. One student wondered why Tennyson chose the word hay instead of grass. We ended up talking about the last word in each line and then came the "aha" moment for her. Then, we noted what Tennyson was trying to portray (the owl's view from the belfry). Another student added, "Owls can turn their heads all the way around"—implying how much of the world the bird could see while sitting still. I had not intended this for happen, but the section of the science book that we read included this quote,
Other aircraft are a danger as well. Turbulence from a helicopter can slam an ultralight to the ground. When an army helicopter cut in front of Mark south of Numidia, he had a few anxious moments before he knew he was safe. As for swans—they can hit the plane. Mark says, "You have to know where the birds are all the time and be ready to dodge every second. I need an owl’s head so I can turn to see directly behind me."
Everyone's eyes lit up. We were all amazed that an accidental pairing between poem and science book had happened twice in a row! Accident, or whisper from God?
Education is life. A mind awakened to beauty and truth in the world God created. A soul seeking His presence. A person who cares enough to ask, who longs to know.
Pay attention and come to Me; listen, so that you will live. Seek the Lord while He may be found; call to Him while He is near. Isaiah 55:6
In this busy season, we find it hard to pay attention and come to the Lord. Yet, the only way to live is to seek Him and pay attention. This habit is hard to come by in this screen-infested world. Getting outdoors and seeing what God created with His own voice is one way to practice the habit of attention, especially when we are quiet and still. Nearly everyone in our walking group passed this katydid without noticing it. The student who found it explained, "I just saw this tiny bit of green. Everything is so brown right now that green just pops!" She has been walking this trail for almost a year and a half, which helped her develop the habit of attention.
"For My thoughts are not your thoughts, and your ways are not My ways." [This is] the Lord's declaration. "For as heaven is higher than earth, so My ways are higher than your ways, and My thoughts than your thoughts." For just as rain and snow fall from heaven, and do not return there without saturating the earth, and making it germinate and sprout, and providing seed to sow and food to eat, so My word that comes from My mouth will not return to Me empty, but it will accomplish what I please, and will prosper in what I send it [to do]. Isaiah 55:8-11
Some friends are facing a season of rain and snow because of heartbreaking challenges in life, due to no fault of their own, beyond their ability to change or control. The extreme and exhausting behaviors of puberty on top of autism. Sitting at the bedside of dear ones in the hospital. Waiting in the emergency room watching your child in pain. In the long winter nights of cold, hope is hard to see. God's ways and thoughts are hard to understand when things appear bleak. Somehow, even after tears saturate the earth, God provides and His will is done. Narnia will thaw; it always does. Spring is always around the bend, whether the bend is in this lifetime or the eternal one.
You will indeed go out with joy and be peacefully guided; the mountains and the hills will break into singing before you, and all the trees of the field will clap [their] hands. Instead of the thornbush, a cypress will come up, and instead of the brier, a myrtle will come up; it will make a name for the Lord as an everlasting sign that will not be destroyed. Isaiah 55:12-13
Taking time to stretch our legs, our eyes feasted on beauty at the St. Louis Art Museum for nothing more than a voluntary donation. I chose to keep ten dollars for parking underground in my pocket and walk in the bitter cold because of the plentiful free parking. The added bonus was this gorgeous view of the reflecting pool in front of the museum.
While we had planned to visit a couple of dear friends (van Gogh, Monet, Millet, and Winslow Homer), the first painting that captured our attention was this ginormous painting of King Charles I by Dutch artist Daniel Martensz Mytens the Elder. This trip revealed that art is a shared experience, not just with your companion but also with friends from afar. When we spied this commemoration of his coronation, I recalled a conversation with the elementary class at Harvest Community School last week. The students are very much aware that Charles I lost his head, so they were intrigued that Carolina and Charleston are named for his son, Charles II, who managed to keep both head and throne.
Pursuing van Gogh, we came across this version of the madonna and child by Davide Ghirlandaio. The Roman numerals, MCCCLXXXIV, painted on the stairs caught Pamela's eye, and she quickly read the date as 1486. Again, I thought of the elementary students at Harvest because they want to learn Roman numerals since some books number chapters in this manner.
Monet's Water Lilies were gorgeous, and seeing someone notebooking increased my delight as I revel in The Living Page by Laurie Bestvater! We finally found three van Gogh's in a row. Pamela said her favorite is the one to her right, Factories at Clichy. Van Gogh included two tiny figures in front of the factory, hard to spot, but logical when considering how small we are beside the mechanical wonders made by our hands.
While the dancing grapevines in Vineyards at Auvers (shown clearly in this detail) tugged at my heart, my favorite is Stairway at Auvers, a painting which quivers with delight. Again, I am reminded of our school for the primary class adored this painting by the artist they call "Rainbow Man." When I texted a picture of Pamela standing beside the stairway to a friend whose children attend Harvest, her kids were amazed that we saw the masterpiece with our own eyes.
On the way to Millet, we spied greyhounds painted by another realist Gustave Courbet. We had to take a picture for our friend Eman, the ultimate dog lover. We even texted a picture of Pamela and the greyhounds to his mom. The other day, when we were walking with him to pick up lunch, we saw this cute little white dog named Lily. He could not contain his delight and said, "It's a Maltese! I love her!" As she was wearing a brown sweater, I let it flow into an impromptu Spanish lesson with the teen who had joined us. We figured out how to describe the encounter in a second language, "Veo una perrita blanca con un sueter pardo. Su nombre es Lily."
Right next to Knitting Lesson by Jean Francois Millet, we saw Girl with Mandolin by Jean-Baptiste-Camille Corot. Seeing the mother teach her daughter to knit brought to mind the finger-knitting lessons on the porch swing at school. One student taught another, and, before long, the entire elementary class knew how to make scarves and belts. I had to take a picture of the Corot for my friend Leslie adores this artist. I tagged her once I posted the shot on Facebook.
Before reaching our final destination, we met George Washington by Gilbert Stuart, pictured on Pamela's left. Apparently, Stuart cranked out so many of these portraits that he called them hundred dollar bills! Pamela and her class has been reading a short version of his biography in Four Great Americans. How serendipitous to find his portrait on the way to Winslow Homer's The Country School, which brings to mind Understood Betsy, a book that our entire school just finished reading.
I will conclude with this collection of arms and armor from the Middle East and Far East, which remind me of the boys who spend recess imagining themselves as heroes and villains in battles, real, fictional, literary, historical, and invented. Making GOOD time is not about how fast you finish a journey. It is about making good memories, reflecting on past experiences, and sharing your discovery with friends.
We study art for its own sake! However, if you must find a utilitarian reason to visit art museums in this standardized-test-obsessed world, this article might convict you. "Students who, by lottery, were selected to visit the museum on a field trip demonstrated stronger critical thinking skills, displayed higher levels of social tolerance, exhibited greater historical empathy and developed a taste for art museums and cultural institutions."
I hate to say it but we had a mixed Christmas. Leading up to the day was hectic between singing gigs (four on December 19 including the fun off singing Mele Kalikimaka while wearing leis), parties, and a bonfire. Besides homeschooling, helping to design a website for my church distracted me too.
It all started out well on Christmas Eve. We attended a "candles in the round" service, which alternated reading Bible passages on the birth of Jesus and beloved Christmas carols. Then everyone gathered near the front of the church in a circle for the candle lighting. Pamela had not attended a service like this in eons, so, when the deacons flipped off the lights, Pamela asked rather loudly, "Is the power out?" She didn't want her candle lit and was fine until Steve tried. She said, "Don't burn me!" and he gave up. Yep, she is finally saying those funny little things that kids say in church about twenty years late. I am so glad we have a relaxed, loving church family who rolls with the punches when kids of any age speak their mind. It was a beautiful service, outbursts and all.
After church we headed to my folks house. We didn't have to go over the meadows and through the woods to get to grandmother's house. We just walked across the street. We saw my brother (who is in the Navy) and his family plus my local brother (and three friends that he brought unannounced). My mom made homemade pizza but not enough for everyone but baked some frozen ones so she managed).
The kids opened gifts.
We had a lot of laughs. How could you not laugh with the dynamic duo David and Daniel!
Oliver, my brother's westy, was a mess. He fell in love with a blue squeak pig and would do anything to get to it. The poor guy tried all sorts of maneuvers to get at the toy when we put it on the top shelf. He has a very good sense of object permanence apparently.
We stayed up late, talking into the night. Because the kids opened the presents the night before (a family tradition), I slept in until 9:30! I spent part of the morning cooking food for Pamela. Mom wanted to try something different for Christmas dinner, so she chose goulash. She didn't add flour until the very end and set aside a flourless portion for Pamela. I made a gluten-free version of the tradition noodles used for this dish: nockerl. Since some folks were on low-carbohydrate noodles, I chose soy flour as one of the flours to make it an alternative for others. The other flour had on hand was sorghum and the nockerl were quite tasty the next day when I recycled the leftovers with spaghetti sauce and hamburger meat. For dessert, I baked a gluten-free, casein-free impossibly easy coconut pie that was absolutely delicious. I tweaked the recipe by using coconut milk for the milk, Earth balance butter, and frozen coconut (not the dried, flakes kind) and cutting down the sugar to half a cup because we like our sweets less sweet.
After dinner, we opened the adult gifts. Steve played disk jockey, and we listened to LPs (long playing records, vinyl) from the 1960s while my brother and his crew looked through old photo albums. His wife saw a few pictures of Pamela right before autism hit hard. Yes, she did look at people in the face. She did have vocal play and did the back and forth babble with us. Some of the sensory issues had already hit her for she craved vestibular stimulation (bouncing while being held) and tended to leave overcrowded noisy rooms. Her social and verbal delays were mild at that point.
Then, we taught my mother how to play Blackjack. Steve loves this game and made a most excellent dealer too. We went home at about nine and a half hour later Mom called with the awful news. My dad's surviving sibling Jerry died on Christmas Day. We knew it was coming for the doctors had diagnosed him with treatable but uncurable Stage IV lung cancer last summer. About a month ago, they stopped the treatments which were not doing much for his quality of life.
Uncle Jerry knew the Lord and we have no doubt that we will see him in Heaven. The timing stinks. Aunt Edna had already lost a daughter a couple years ago and a grandson a year after that. Now, she has lost her husband of fifty-four years on Christmas day. I cannot imagine how she will be able to get through Christmas from here on out. Only God can get you through that kind of ache.
On the other hand, it causes one to think about the real meaning behind Christmas. The babe in the manger was no ordinary child. He came here to die so that we could live. Processing the death of a loved one on Christmas day reveals the truth behind it . . .
Hail the heav'n-born Prince of Peace!
Hail the Son of Righteousness!
Light and life to all He brings
Ris'n with healing in His wings
Mild He lays His glory by
Born that man no more may die
Born to raise the sons of earth
Born to give them second birth
Hark! The herald angels sing
"Glory to the newborn King!"
The past two Christmas seasons have been so hectic, we did not have time for advent. This year, we decided to do it even if it meant sitting around the wreath and singing on a Tuesday night. Sure enough, by the time David got home from youth group last night, Pamela was already in bed and Steve was fading fast.
So, we celebrated the first Sunday of advent on Monday! We lit one candle and cycled around the table, letting each person pick a favorite song. I can tell how much Pamela has changed because, this year, she gave me face to face contact as we sang several carols. She has a very light, sweet soprano voice and decent timing, but the lyrics definitely need more work!
Steve never sings because he has about one note in his repetoirie. This is the first year David opted not to sing, in spite of the fact that he can carry a tune and has a soft baritone voice. I did not act disappointed and was later rewarded for my patience. After we were finished with the pumpkin pie for our advent treat, David ran upstairs to his bedroom and spent about an hour practicing Christmas carols on his recorder so that he can accompany us next week!
Sixteen years old and David is still suspectible to being bitten by the advent bug . . .
But, that is not what was un-thinkable about yesterday . . .
For the first time in her life, Pamela succumbed to the Black Friday hoopla and decided we were going shopping on that ominous day. Ominous because I hate shopping and the day I hate most to shop is black Friday! However, I will do anything for Pamela and we braved Walmart together in search of stuff for an elder basket and an angel tree child. Fortunately, because we waited until after lunch shop, we did not witness any stampeding shoppers. Of course, in a town south of the Mason-Dixon line with population 4,000, one would not expect such unladylike behavior.
Our church also participates in an elder basket program in which people fill an ordinary laundry basket with packaged food, personal care, and household items. Pamela helped me pick out items for our basket and I used up the rest of the baby blanket cotton yarn on a Basket Weave dishcloth, nubby-scrubby washcloth, and extra thick potholder and I still have enough remaining to knockout another basket weave dishcloth I plan to include two bars of Ivory soap for the under-a-dollar gift I'm supposed to bring to the monthly Bible study class next month.
David, the giant, jolly elf, decorated the Christmas tree. He also terrified our gentle parakeet Lily by putting a gargantuan lifelike bird on top of the cage. She flustered about the cage, so he took it off after a minute and replaced it with less intimidating froppery. And, when he was not busy entertaining the neighbor's grandsons, David took a picture of the Arwenator wearing a Santa hat . . . I guess all that hard work makes up for the disappearance of half a container of ice cream, egg nog, and pumpkin pie . . .
Steve nearly finished his mammoth to-do list, which included doing Christmas cards, which he decorated with the most interesting collection of stamps. . .
Last week, I promised to give some tips on how we helped Pamela learn to relax and enjoy family events.
Lowered Expectations Our Daily Bread's devotional for December 19, 2007 made a great point about having a "real" Christmas. After noting that Jesus was born into a harsh world with no room for His family and run out of His homeland by a mad king seeking the murder of all infants His age, David C. McCasland wrote:
[Jesus] "comes to us, not to shield us from the harshness of the world but to give us the courage and strength to bear it; not to snatch us away by some miracle from the conflict of life, but to give us peace—His peace—in our hearts, by which we may be calmly steadfast while the conflict rages, and be able to bring to the torn world the healing that is peace."
The reality is that Pamela has autism. That means I have to find ways to accommodate her special needs while celebrating Christmas. That means I have to expect some conflict and storms. That means I may not have a picture-perfect celebration out of some Norman Rockwell painting. But, I can have that inner peace and calm steadfastness if I turn to God with my burdens.
Diet Issues Pamela is on a special diet, and making exceptions for any holiday spells disaster! We have worked hard to find tasty versions of typical holiday recipes. In fact, people often eat Pamela's version without realizing it is "special" food. For many parents, the issue is not us, but clueless relatives. Those who approach our kids with a "just one cookie won't hurt" mentality unintentionally launch them into holiday meltdowns. I was fortunate because early on in the diet game all of Pamela's relatives on both sides of the family witnessed with their own eyes what the wrong food does to Pamela. They all help me figure out (1) what recipes and treats are safe for Pamela, (2) what foods I will need to bring as a replacement, and (3) what recipes they are willing to make Pamela friendly. Pamela has a better chance of relaxing and enjoying the celebration if she stays free of problem foods.
Sensory Issues Pamela is much more resilient to sensory overload than she was ten years ago. We do not require her to wear special holiday attire, which can be itchy and uncomfortable for the tactile defensive--she has not worn a dress in years! In noisy settings, we allow her to protect her ears by covering them or leaving the room. She has learned to monitor her need for quiet and seek it on her own BEFORE she explodes. We accept that she might have to come and go, just to stay calm. When she was younger, I watched for signs that the ticking sensory-bomb was about to blow. I would whisk her out of the room and spin her until her body melted. We are very fortunate that Pamela's family on both sides accept our explanations of her sensory needs. They are not offended or upset when she quietly leaves a room to find an escape hatch. They know that her face rubbing, gentle rocking, or victory laps are her own expressions of joy. They also know that tantrums are a sign of extreme frustration, not of spoiled rotten behavior, which can be avoided if people follow our lead in helping Pamela cope with the holidays.
Slowing Down
Pamela needs people around her to slow down and wait patiently for her to process and react. More importantly, she needs "quiet time" in which we allow her to relax and get away from it all! In a week full of hustle and bustle, I have to be prepared for Pamela to ask to stay home and skip an event or two. If I do not heed her request to slow down, I end up regretting it. Here is a clip of the two most sensory-sensitive individuals in the household resting after we opened gifts. Every one is busy setting the table, fixing food, cleaning the dishes, etc. This clip shows what Pamela needs to be ready for the next event on the agenda (dinner).
Simplify Christmas for some autistic people is like being held captive in one of those King-Kong complex, seizur-ific, multiple Clauses, snowman-in-laws, MORE IS NOT LESS tacky Christmas yards. In early childhood, you might help keep them calm by having a simpler Christmas: a small tree on a table rather than the six-foot monstrosity, a few highly desired presents, only your most cherished decorations, one or two special family events, etc. When we moved to Connecticut and first started homeschooling, Pamela was 6.5 years old. We developed a routine of shopping, going to the park, nature walks, and checking out library books. Even library storytime was a big flop! We attended only a handful of homeschooling events throughout the year. We did not live near family and could celebrate Christmas in the quiet, slow way Pamela needed. Between simplifying her life and going on a special diet, Pamela was able to attend a few holiday events, meltdown free. From year to year, we slowly added back activities into her life and even moved near family. We began to build a routine into our Christmas like I had as a child: singing carols on the four Sundays of advent, counting down on the advent calendar starting on December 1, etc. We kept our celebrations small and family-focused. In her teen years, Pamela could handle more and we added musical performances and church events to the mix.
Gifts Not all gifts produce joy and finding the right gifts often presents a challenge, especially for non-verbal children. While at Wal-Mart, I came out and asked Pamela directly about what she wanted for Christmas. A few days later she added one more thing to her list, but I could not understand what she wanted. So, she wrote down towel robe on a piece of paper. Some autistic children have difficulty making decisions or verbalizing their choices, in which case it pays to observe their behavior in the toy aisle and during television commercials. Usually, our relatives will ask what Pamela wants for Christmas and I try to give them suggestions based upon her wishes or strong interests. This year, all of the aunts headed to Wal-Mart together to give each other ideas about what the nieces and nephews wanted. We saw many smiling faces at our Christmas celebration.
Pamela spent about five minutes examining her red towel robe but hardly glanced at the matching red slippers. Occasionally, her reactions are like A Christmas Story's Ralphie and Randy tossing clothes over their shoulders (twenty seconds into this trailer). When Pamela has that blank, zoned-out look, I try to smooth over hurt feelings by letting people know she is going into sensory shutdown. Another option is to photograph or film your child playing with the gift later, and letting the relative see how treasured the gift really is. If it is a pink bunny suit moment, well, the giver either has thick-skin or is not used to getting compliments.
Favorite Things Like Maria in The Sound of Music, we let favorite things cheer up Pamela. Before we go on a trip or to someone's house, she packs her purple back-pack with her Game Boy Advance, Mario and Luigi Superstar Saga, paper, pencils, journals, Disney Charade cards, etc. When she was younger, I packed it for her, but now she has that responsibility. When that fails, reciting a couple of verbal stims together or talk about a strong interest helps her to regulate and reconnect. Lately, Baby Alive, the fifth member of our family, goes with us everywhere.
Short and Sweet
When away from home for the holidays, we always had to have Plan B. If a situation was too much from the start, we often skipped the event. If Steve or I had to be there, I looked for an escape hatch (some quiet place where we could hang out) or simply took Pamela home or back to where ever we were staying for the night. If we were at a hotel, we tried to pick one with a swimming pool because Pamela finds water calming.
Preparation With family that I see regularly, I try to work in discussions about Pamela's autism and needs and win them to our side. For example, last Sunday, I was hanging out my mother, and we got to talking about RDI. I told her I was so happy with how Pamela interacted and related to people at Christmas Eve. Mom wanted to know what she could do, and I told her the two big tips for beginners: SLOW DOWN and SPEAK DECLARATIVELY. Mom is going to let me give her tips whenever she and Pamela are interacting so that she can support what we are doing.
Sometimes, quickly evolving situations left no time for explanations. We have done things like make a kid's brochure to help peers understand Pamela better (the pamphlet helps adults, too). For babysitters, we wrote up two-page notes explaining everything that might need to know about handling Pamela. We have taken sign language off and on throughout the years, so often simply signing told people that Pamela was not an ordinary child. For large, anonymous crowds, you might have your child wear a T-shirt or hand out business cards. On field trips, Pamela wore a shirt that said, "Autism rocks," and David's shirt said, "We are in school" to keep the busybodies at bay.
Perspective Having to change as a parent and spend so much time planning and preparing can be draining. Being looked upon as the Adam's family when your cute little daughter is doing the Indy 500 around the church altar is no fun. I want to scream when told, "All she needs is a good pop on the hiney." Keeping our challenges in perspective keeps me sane. For example, think about how holiday planning changes for a family dealing with cancer. If one person attending Christmas dinner has a cold, you stay home! Pamela is mobile and healthy, so we do not have to carry around equipment or medical supplies. Over the years, as I saw Pamela becoming more and more resilient, I began to see that some day the holidays will get easier. And, I was right: Pamela had no problems this Christmas and told me she had fun as did Steve and I!
Boundaries
I could spend an entire post on the topic of toxic people. Some people do not care about you or your child. Anything odd or different spoils their precious day. They denigrate every decision you make and launch cruel, cutting remarks in front of your loved one. Some people have difficulty changing their ignorant, idiotic opinions no matter how much you try to spread autism awareness. In such cases, they leave you no option but to take control of your life and set healthy boundaries to protect your family from toxic people.
