Rhetorical Question of the Season

If you could plan the ideal school for your special needs child, how would it look? What would the setting be like? What must the school teachers do or the school have for it to be a lovely day for your child? How would the day flow? What extra needs must be addressed and how it they be addressed?

Surviving the Holidays

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.

Safe People in Pamela's Life

Low-Tech Happy New Year Tip!

This low-tech tip is great for working on narration skills or speech therapy. Like typical children, Pamela falls in a rut with word choices. If asked how she feels, she usually answers, “Happy” or “Sad.” When describing the emotions of a character in a book, she picks the same words: happy, sad, angry, or afraid. To build up her vocabulary and help determine how new emotion words match with ones she already understands, I put new words on paper plates. Whenever we discover them in the books we read, I write them on the edges of the plate in the proper quarter. If Pamela falls back on the same old words during a narration, I pull out the plate to suggest alternatives. The picture is a bit blurry, but you get the idea. Words for happy include cheerful, giddy, and joyful; sad: gloomy, depressed, mournful; angry: irate, wrathful, furious; and afraid: frightened, terrified, scared.She has the same issue with people words and verbs. If asked, “Who does __________ see?” her response was almost always, “________ sees people.” Whenever we run into new kinds of people in books, I write them on our people plate. The people plate helps her pick words that are more appropriate if all that pops in her head is people. The image is a tad blurry, but along the rim are words like parents, children, farmers, sailors, knights, teachers, doctors, etc.

We are broadening her use of verbs too. If asked, “What can __________ do?” she usually says, “_________ can go.” I recently started a new subject-verb plate where I document what verbs are often associated with what nouns. She already knows these associations, but needs hints about more specific words than go.

The Wonders of a Dry Erase Board!

While I find technology useful, low-tech helps are great too, especially ones that are inexpensive. One is our portable dry-erase board. Some autistic children struggle with the smell of the markers, but not Pamela. During their free time, both children enjoy drawing pictures on this board. I have used it in many ways:

• Beginner writers find writing on a vertical plane much easier. I started my children with a dry erase board mounted on the refrigerators with magnets.
• In Handwriting without Tears, a dry erase board worked better than a handheld slate, which broke! Some kids dislike the feeling of chalk dust, and they avoid fingernails scratching on a slate.
• When we first introduced narration, I wrote keywords and character names to which the children might want to pay attention. As each child narrated a keyword, I recorded a brief summary to give Pamela visual reinforcement.
• We recorded the schedule for the day on the dry erase board. If we were out and about, it was easier to carry and harder to lose than handwritten notes. If our plans changed, we updated it on the board.
• When Pamela did not understand the need for whispering in a group setting, we would "talk" by writing on the dry erase board. She also quietly entertained herself with it.
• Pamela has to copy questions and sentences in cursive for speech therapy (the association method). I write them on a dry erase board to avoid wasting paper.
• You can document any work done on a dry erase by taking photographs as I did in the following picture:

For my college-bound child, I have the dry erase board helpful in teaching him to take notes. As we read through his biology book, he tells me what notes to write. After we fill up a board with notes, he copies them down to simulate taking notes during class lectures. Pictured below are two boards of notes on the parts of the cell.

The most recent really cool, life-saving, self-help, low-tech tip came from my email list, Aut-2B-Home. One mother solved the problem of missing spots during tooth brushing by rinsing with Listerine Agent Cool Blue Mouthwash as directed. The rinse reveals the presence of plaque much like those pink, chewable tables did for me in school when I was a little girl. This visual cueing solved Pamela’s spotty tooth brushing habits overnight!

The Best and Cheapest Investment Ever!

The best and cheapest investment in homeschooling curricula I ever made was a 1992 Hammond Ambassador World Atlas. I bought it at a used library book sale in St. Cloud, Minnesota for two dollars. Only two dollars! We have traced many exciting journeys in our atlas and, because it cost me next to nothing, I boldly mark the maps as we go.

Pamela just started reading aloud The Endless Steppe by Esther Hautzig, a memoir about a Polish family herded into cattle cars and forced to work at a labor camp in Siberia during World War II. When I circled Esther’s hometown, Vilna, on our Russia page, we noticed she lived close to the hometown of another Jewish girl who fled her home in Berdichev, Ukraine in Letters from Rifka. Her family fled Russian persecution of the Jews after World War I. We had circled several cities to trace Rifka’s journey to Ellis Island: Warsaw and Antwerp.

Pamela enjoys finding geographical connections between books. When we learned that Ralph Moody was moving to Maine, she was thrilled because Rebecca of Sunnybrook Farm lived in the Pine Tree State too. Although the towns featured in this book are not in our atlas, we circled what might have been the model for Riverboro (Hollis, the town where the author spent her childhood). Not far from Hollis is a town called Windham, whose name bears a striking resemblance to Wareham from the book. It might be a coincidence, but we circled it anyway. After reading the first chapter of Fields of Home, we added two more circles to our Maine page, namely Bath, where Ralph’s ship arrived, and Lisbon Falls, where his grandfather lived.

Twenty-three pages of terrain maps of the ocean floors are a lifeline as we read The Sea around Us. Rachel Carson described continental shelves, which Pamela found colored light blue on our relief maps, and the deep ocean in dark blue. When the author named the Atlantic Ridge, Pamela traced it with her finger as well as other ridges outlining the continental plates of the world. When she read about various trenches, Pamela located them and traced quite a few. As her fingers traveled across the ocean, we are reminded of other nautical journeys in our present (Carry On, Mr. Bowditch and 20,000 Leagues under the Sea) and from our past (Kon-Tiki), all of which are marked in our atlas, which we are tranforming into a prized momento of our literary travels.