Sunday, January 06, 2008

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

4 comments:

Molly said...

this was a great post!! Thanks for sharing this!! I really like the idea about taping her playing with gifts so that people can see that she does enjoy them.. brilliant

Astreil said...

Tammy,

This was an excellent post. You covered everything I could think of.

Being in control of his needs helps T a lot. My grandmother has a detached guest house where T can go on his own to have a quiet place to read or draw. Many times, he escaped into my grandparents' bedroom to watch cartoons.

Luckily, my family, which is the loudest I have ever encountered, is very sensitive and understanding when it comes to T's needs. They know that he'll be back when he is able and don't take it personally.

Prince Andrew and the Queen Mum said...

GREAT! passing this along... gonna come back and check some of the links later.

The Glasers said...

Molly, Pamela is 18 yo, so I have had sixteen years to reinvent the wheel . . .

Astreil, my family is loud, too. When I was watching the video of Christmas Even, I wondered how Pamela could stand it. Loud people laughing and talking in three different languages. She did splendidly!