This is a blog post by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.
Saturday was the Pumpkin Festival. As my brother and I wandered around looking at the colorful, wildly shaped pumpkins and gourds, I realized that Halloween is the harbinger for the upcoming holiday season. While other families carve pumpkins and scheme over costume ideas and how to keep the sugar intake to a minimum- my brother will be needlepointing his heart out. While other families excavate Halloween and holiday decorations from boxes in the attic, Phillip will be obsessively crossing days off of his large collection of calendars. While we all ramp up our already hectic schedules to include gift ideas, holiday outfits and double-book numerous get-togethers, it is slightly different for those of us who have special-needs family members.
My brother, Phillip, is a severely autistic adult and lives in a group home in North Hills, California, administered by New Horizons, a non-profit organization dedicated to helping adults with developmental disabilities. Phillip also attends a day school called Tierra Del Sol Foundation. The 9th Annual Fall Festival was a fun way to raise funds for Phillip’s day school. Among the great line-up of entertainment was Murphy’s Flaw Band- a terrific bluegrass group and gorgeous Aztec dancers that dazzled the eyes and ears.
Phillip really loved looking at the ceramic crafts hand-made by him and his classmates. It takes a subtle eye to recognize what Phillip really enjoys since he doesn’t speak and willingly goes along with pretty much everything I suggest. Sometimes I feel like the narrator of his life. “Isn’t this a beautiful mask, Phillip?” or “Phillip, are you ready for lunch?” He’ll nod a sort of yes to everything I ask him, especially if it relates to food! Or I can tell by another look in his eye that he appreciates what I am seeing or is ready to see something else. When I am with Phillip, if I still my inner voice and erase any personal agenda, I can hear him with my eyes and appreciate exactly who he is, not wish him to be who he simply will never be.
The holidays matter to us as well, just a little differently than everyone else. When you have a sibling who cannot speak, make direct eye contact or give a hug, a Gap Gift Certificate doesn’t quite manage to bridge the gap. Phillip would be far happier watching me draw a pattern for him to needlepoint or baking cupcakes with him or simply being with him. For those who are uncomfortable with developmentally delayed people, when it comes to birthdays or holidays, doing nothing appears easier than wondering whether a gift or card would even resonate.
But focusing on what simple acts delight our autistic family members is the kind of holiday gift that money cannot buy. I have dear friends who make a point of including Phillip in their life because they recognize he is an important part of my life. They mail him postcards regularly from anywhere in the world, even from home, because they know he is thrilled to receive them. As Edmund Burke said, “Nobody made a greater mistake than he who did nothing because he could only do a little.” The greatest gestures can also be the smallest.
Holidays nowadays are more likely to resemble high stakes poker games or full impact sporting events or high spending reality shows than simple exchanges of love and friendship. Holidays can be hallmarks of tiny gestures. In our fast paced and recession-tired current times, holidays prove to be challenging for all families.
Almost every American has grown up with Norman Rockwell’s cheerfully chaotic portraits of large joyful families crowded around a Thanksgiving table. For many of us, Rockwell’s iconic paintings hold up a beautiful ideal of family life. As a child, I truly admired Rockwell’s incredibly warm-hearted realistic paintings. As I studied art at UCLA and became an Expressionist painter, I grew to reject Rockwell’s idyllic utopia as sugarcoated and corny. I’ve come full circle with Rockwell, and now can truly appreciate his extraordinary talent as an illustrator, especially as I now know more about Rockwell’s life. He grew up in a silent, working class family in New York City, married three times, and struggled with depression. A telling quote of his was that he painted his happiness but did not live it. Not that I am trying to celebrate the woes of those who famously appear happy, I merely appreciate knowing that not even Norman Rockwell had the Norman Rockwell fantasy holiday season.
We are all fraught with unfair expectations that every holiday season must be the perfect embodiment of familial bliss. As soon as Halloween is over we brace ourselves for the marketing onslaught in stores and on inundating us with endlessly perfect present suggestions and spectacularly decorated homes, trees and stunning meals. It seems every year the goal gets higher, more expensive and sadly more elusive. But perhaps we can all jump off the holiday hamster wheel if we simply re-adjust and redefine our values. Find the gift that isn’t the mall. Look deeper at the act of giving.
For Phillip, the best presents are silent, handmade gestures from the heart. The best gift I can give my beloved brother is myself; I design the needlepoints he stitches. Our gift to each other is how we communicate via our creative collaborations. His endless gift to me is to treasure the present moment. Perhaps determining how best to give of ourselves can be the most rewarding New Year’s Resolution we can make.
This guest post is by Shannon Penrod, the host of Everyday Autism Miracles.
I host a radio show called Everyday Autism Miracles – every week we do a live one hour show about positive things happening in the world of Autism. Tomorrow I want to do a show showcasing real stories of HOPE from familes all over the spectrum – stories about what they’re grateful for, what the miracles are that are happening in their homes. Part of this amazing journey through autism is appreciating the things that may seem small to others but are huge to us.
So I would love for people to write in short comments to tell us what they are celebrating, was Beth able to say a two word sentence for the first time? Did Billy make great eye contact today? Did Philllip pass his driving test, when 32 doctors said he would never be able to speak, let alone drive? Whatever it is in each home. There is no mirace too small! And then I will read as many of them on the air as I can manage.
The show airs live tomorrow (Friday) at 2pm EST 1pm Central, Noon Mountain Time and 11am Pacific on Toginet Radio. People can listen at www.toginet.com and they can call in to the live show at 877.864.4869 during the show if they want to comment on the air. A podcast of the show is available for free starting on Saturday on the showpage www.toginet.com/shows/everydayautismmiracles and on iTunes by simply searching Everyday Autism Miracles.
Thank you, I am so looking forward to hearing what people have to say and sharing it with the world.
Leave comments on the Official Blog and Facebook. They will be passed along to Shannon! Thanks!!
This “In Their Own Words” post was written by Marcia Wiener of Scoth Plains, New Jersey. Her son Jonathan is on the autism spectrum.
Even though Jonathan is eight years old, this really feels like it’s Jonathan’s first Chanukah. In years past, he would go over to the menorah, blow out the candles, and sing “Happy Birthday.” He wasn’t interested in playing dreydel or eating chocolate Chanukah “gelt” (coins). We weren’t able to get his attention long enough to have him light one of the candles. Until this year, Jonathan wasn’t really interested in Chanukah.
But this year, something happened. We still don’t know exactly what it was.
Maybe it was the music. Jonathan has a beautiful voice, and he loves to sing all sorts of songs. This year, he learned the blessings for lighting the Chanukah candles in Hebrew school. And when he heard us start to sing the blessings at home, he immediately joined in.
Maybe it’s the dancing lights of the candles. This year he points to the menorah and says, “Chanukah.” Yesterday he lit his own candle for the first time. This year, he spins the dreydel and eats the Chanukah gelt and says, “Gelt”, “Chocolate”, “It’s delicious!”
When I was a child, looking at the flames and the beauty of the menorah and being with family meant Chanukah to me — more than the latkes, more than the presents. And I see Jonathan being moved in the same way.
This year, for the first time, I have the feeling that Jonathan is truly celebrating Chanukah with us. It speaks to him of family, of joy, and of home.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
A little planning goes a long way: individuals with autism and their families get ready for holiday travel!
This is a blog post by Marianne Sullivan, the Assistant Director of National Outreach and Resources for Autism Speaks. Marianne is the mother of an 18-year-old young man with autism.
Holidays are the busiest time of year to travel by plane. Preparing a child, teenager or adult with autism spectrum disorder for plane travel, and new security techniques used at airport security checkpoints, can make a huge difference in making plane travel a more enjoyable experience for all involved.
Start by providing the airline with advanced information. Offer to email or fax information to let them know you will be traveling with an individual with autism and the challenges the individual may face on travel day. A good place to start is to prepare a one page document with information stating the diagnosis, know allergies and medications, and other special information (i.e. communication ability).
Persons with autism should always carry identification. Make sure an id tag is attached somewhere on the individual. You can order medical bracelets, necklaces and tags to attach to shoe laces. If the individual carries a cell phone, activate the GPS device as a safety precaution. Adult passengers (18 and over) are required to show a U.S. federal or state-issued photo ID that contains the following: name, date of birth, gender, expiration date and a tamper-resistant feature in order to be allowed to go through the checkpoint and onto their flight. Acceptable identification includes: Drivers Licenses or other state photo identification cards issued by Department of Motor Vehicles.
To help prepare the individual for the trip bring a special item to make the individual feel more comfortable. A favorite electronic devise or book an help focus the individual during the travel days, which are often filled with lots of waiting, Remember to rehearse or discuss the travel plans with the person prior to travel day. Having special foods readily available, rather than standing in long lines, will help things go smoothly.
Traveling by Plane
“I called the airport and explained that my 6-year-old son Marcel has autism and had never flown before and we were planning a trip in December. Before our travel day, airport personnel allow[a1] my son to do a simulation of what would happen when he went through security checkpoint step by step. This made all the difference for my son. If you can’t do a practice run, at the very least, alert security about your child’s issues[a2]
Marcy Mullins, Cincinnati, Ohio
Every individual has to be screened regardless of age or disability, before going through an airport security checkpoint. Security techniques include; walk through metal detectors, Advanced Imaging Technology (ITA), pat-downs and other types of security measures. Be sure to check the TSA website for airport listings and techniques being used. www.tsa.gov/index.shtm
What triggers a pat-down?
Pat-downs are used to resolve alarms at the checkpoint, including those triggered by metal detectors and AIT units. Pat-downs are also used when a person opts out of AIT screening in order to detect potentially dangerous and prohibited items. Because pat-downs are specifically used to resolve alarms and prevent dangerous items from going on a plane, the vast majority of passengers will not receive a pat-down at the checkpoint.
“Family members or traveling companions can advise Security Officers when they are traveling with someone who has a hidden disability, which may cause that person to move a little slower, become agitated easily[a3] and/or need additional assistance.”
TSA website www.tsa.gov/index.shtm
Parents or guardians of children with disabilities should…
- Inform the Security Officer if the child has any special needs or medical devices.
- Inform the Security Officer if you think the child may become upset during the screening process as a result of their disability.
- Offer suggestions on how to best accomplish the screening to minimize any confusion or outburst for the child.
- Ask the Security Officer for assistance during the process by helping you put your and the child’s carry-on items on the X-ray belt.
- Know that at no time during the screening process will you be separated from your child.
- Know that if a private screening is required, you should escort and remain with your child during the private screening process.
- Tell the Security Officer what are your child’s abilities are. For example: can the child stand slightly away from equipment to be handwanded, walk through the metal detector, or needs to be carried through the metal detector by the parent/guardian.
- Know that at no time should the Security Officer remove your child from his/her mobility aid (wheelchair or scooter). You are responsible for removing your child from his/her equipment at your discretion to accomplish screening.
- Know that if your child is unable to walk or stand, the Security Officer will conduct a pat-down search of your child while he/she remains in their mobility aid, as well as a visual and physical inspection of their equipment.
Other Resources on Travel and Autism
Autism Speaks Community Connections: Travel Tips for Individuals with Autism
You can write TSA with your Suggestions or Complaints at:
E-mail – email@example.com
Phone – 1-866-289-9673
Download an app to your mobile phone that tells you in real time the waiting time at security checkpoints.
Tell us about your travel experience! E-mail us at firstname.lastname@example.org.