Hosting the Holidays

You've shopped, cleaned, spruced and primped. With invitations mailed and plans finalized, the scene is set. Then, the last minute call from a good friend…"We're so sorry; we won't be able to make it. Parties are difficult." Translation: Autism

"Host families should understand that people with special needs may not experience the holidays in the same way as we (neurotypical) people might," said Viki Gayhardt, mother of two teens on the Autism Spectrum and Autism Family Support Specialist for The Family Place, a program of Easter Seals, NH. For a child "whose neurological system cannot instinctively sift and sort…" through the sensory onslaught, "…holidays can be a time of misery, not merriment!"

What is a Host to Do?

Although no list of Dos and Don'ts could possibly apply to all families dealing with autism, perhaps starting a dialogue this season will lead to sincere knowledge and understanding.

Do: Extend the Welcome!

"Welcome the child with special needs and his or her parents just like any other member of the family…" said Gayhardt, "Gestures of respect, not pity, are most appreciated. Sincere offers, such as, 'I want to help, but will need you to let me know what I can do,' are most appropriate."

Don't: Make Judgments

"If I were Santa, I would give all guests with special needs and their families the gift of a Get Out of Judgment Free card during any holiday event!" Gayhardt said. Parenting advice and criticism for being overprotective are not encouraging. Children on the spectrum generally need to be watched more closely than their same-aged peers. Caregivers are always on alert and, though they would like to, cannot take a break, for safety sake.

Do: Set Reasonable Expectations

"Imagine the disappointment Aunt Fanny might feel if she bakes beautiful gingerbread cookies for the child, only to learn later that he has a food allergy (or is on a special diet)!" Gayhardt said. She advises that "host families…not knock themselves out to provide entertainment, food, decorations or gifts that they think will make a child happy," opting instead…"to learn more about the child with special needs prior to planning anything exceptional:"

Holiday clothing, with its many ruffles, bows and general stiffness can be particularly irritating to sensitive individuals.

Do not take offense when a family arrives with a casually-clad child. And, for those who do dress in Sunday best, allow space for clothing changes.

Do: Provide a Quiet Retreat

Holidays bring a barrage of sensory input, from unfamiliar faces and flashing lights, to loud voices and unusual music, to distinctive fragrances and unfamiliar delicacies. Festive holiday staples can be confusing, painful or frightening.

Simply providing a quiet space away from commotion and merry-making, and informing the family of its availability in advance, is helpful.

Don't: Force Conversation

Communication can be difficult, even in familiar, calm situations. Many individuals on the spectrum are nonverbal; some use sign language or picture cards to communicate. Know that a child is not purposely ignoring you, but may be unable to answer questions or respond to comments.

Be cognizant of the confusion and chaos the child might be feeling, even in the merriest of surroundings.

Do: Accept Rituals and Routines

Gayhardt points out that "what's most stressful for our children is the uncertainty outside of their normal routines." A child may flap his hands, cover his ears or repeat words and phrases. Oftentimes, repetitive 'stimming' behaviors help the individual to remain calm during trying times. Follow the parents' lead; there's often no need to call attention to the child or intervene in any way.

Don't: Surprise!

Forewarn guests prior to making any changes to the party environment. Providing a simple signal before turning up the music or lighting a candle may be enough to reduce anxiety. Parents can opt to remove their child from a potentially overwhelming situation.

If you're planning "exciting" entertainment at your holiday gathering, (for example, a visit from a well-known elf), give a heads up, even if it means spoiling the "surprise."

Do: Extend an Additional Invitation

Encourage parents to bring along an extra pair of hands in the form of a family friend or Personal Care Assistant (PCA). This familiar person can assist with caregiving tasks, providing parents some welldeserved time to socialize without worry.

Don't: Take It Personally

Regrets, declines, or the need to leave early are not intended as personal slights. Parents dealing with autism are very aware of their child's strengths and limitations, and should be applauded, not criticized, for making decisions regarding their family's best interest.

"Just ten minutes more?" might not seem too much to ask, but in reality, it may be, even if dessert is about to be served.

Do: Show Respect When Sharing Information

"Disclosure of information about the child's disability is a very sensitive and personal subject, but if families want their child to be understood, I believe that some disclosure…must take place to family and friends," Gayhardt said.

As host, always ask permission from parents before sharing information about a diagnosis. "Parents set the tone of trust…and, hopefully, the information is respectfully received with acceptance and understanding," she added.

Sue Lovejoy is a Holden-based freelance writer.

Prepare the Relatives!

Several years ago, when autism was new to her family, Viki Gayhardt left a lecture on communication with sage advice about holidays. "Prepare the relatives!" the presenter said. Gayhardt did just that; penning a personal letter from the perspective of a child on the autism spectrum and sending it to relatives prior to a Thanksgiving celebration. "It was well received and family members thanked me," she said, noting that the holiday was memorable and fun.

She later included her holiday letter in a New Hampshire Autism Support Network publication, for which she was editor. Soon after, "Dear Family and Friends," found its way into cyberspace and has since helped more families than Gayhardt ever imagined. "I get a lot of requests for reprints in the fall! It clearly is an issue close to the hearts of many."

A singer/songwriter since childhood, Gayhardt, found renewed solace in music after meeting a young woman with autism "who was completely non-verbal, but used facilitated communication to write beautiful poetry," she said.

Gayhardt began to write songs about her own children, "…their diagnosis, and the incredible pain that came from learning they would struggle all their lives." The poignant melody and lyrics of While You Sleep were recorded shortly after her second child was diagnosed.

To read "Dear Family and Friends," view baystateparent's blog at http:// baystateparent.blogspot.com/.

For more information, to listen to Gayhardt music, or to contact Viki Gayhardt, visit www.myspace.com/ vikigayhardt.