Tag Archives: The Shafer Center founder and president

Surviving the Holiday Season

Hi Families! I’ll admit it. I didn’t always love December or the holidays. Growing up in a big, Italian, Catholic family lent itself to a lot of crazy, loud gatherings, hugs and gifts from people I barely knew. It wasn’t until I met my husband and had my own children that I really started embracing December and all the wonderment that comes with it. Let’s face it, though, this time of year can be a lot to handle for a neuro-typical person, let alone someone with an autism spectrum disorder. The stores are busier, the lines are longer, and the music plays louder at the mall. Not to mention that nothing looks the same, smells the same, or just is the same as usual. It is stressful and can be even harder to manage if any person(s) in your family has special needs.

Here are some tips to help us all be a little more sane and full of holiday cheer.

1. One of the big things I tell families preparing for the holiday season is to try to look ahead and anticipate where things could be different or new compared to previous years. Then, take that information and develop a plan, knowing that the more effort you put into it, the easier it will be to manage. It sounds obvious, but it works! The more prepared you are for a given situation, the less stressed you will be if something goes slightly awry. In my own life, the preparation alone usually guarantees that nothing wrong even happens.

The Shafer Center founder and president, Helen Shafer, created a laminated, picture & text schedule for her son prior to embarking on the family vacation. She was able to create it based on the itinerary she had worked out and the use of the internet. The finished product was easy to read, attached to a ring for quick page flipping, and incorporated pictures and images taken from the website of their travel destination. She shared with me that she does this prior to any big trips, and even though he may not read it often, it has helped prepare him for what to expect.

In fact, the use of any schedule during any long breaks can help bring structure to otherwise, non-structured days. Keep in mind that while most kids look forward to having 10 – 14 days off from school, this break from organized, planned days can be difficult for any child with an autism spectrum disorder. Just creating simple plans for these days helps to bring purpose and a timeline to the downtime. Your end product may be super sophisticated and detailed, but it can also be low-tech, using a family whiteboard to jot down the days’ activities. Don’t worry, when I say “activities,” giving your child limited time to watch TV counts!

Planning ahead applies to experiencing new things, too! I worked with a family once that was planning a trip from the east coast to Colorado over the winter break. They had two sons, the older of which had autism. So, they sat down and figured out just how they would prepare for the trip. Neither son had been on a plane before, let alone one that required such a lengthy flight. They worked out all the “new” things that would occur on the trip, such as going through airport security, waiting in long lines, being able to sit for long periods of time and entertain oneself, and so on. They worked out a plan to address these issues as much as they possibly could. The family also considered heavily all the things that could go wrong: managing both boys through the actual security checkpoint, flight delays, tantrums mid-flight on the plane. They ultimately created a list of extra supplies to bring (such as snacks and many batteries). The ABA team was able to provide visual and scripted cues or signals that helped with waiting and following directions. Everything went really well, and everyone was much less stressed going into it than initially imagined.

It’s also helpful to consider calling ahead! Since this family’s trip occurred, some airports have developed programs for individuals with special needs that allow them to get on the plane prior to the real trip. USA Today ran an article on it in 2013: http://www.usatoday.com/story/travel/flights/2013/04/17/flying-with-autism-airport-program-helps-affected-children/2088367/. The program, Wings for Autism, has an event next month at BWI. More information can be found here: http://www.thearc.org/wingsforautism. Even though this even has already occurred, it is worth making the call to the airport or airline to see if they can be of assistance to you before, during, or after your flight! Some airlines allow early-boarding, and the airport may be willing to let you jump to the front of a long security line.

So, if you are venturing somewhere new, whether it is the restaurant around the corner or the popular, tourist-spot on the other side of the globe, call ahead and see if someone would be willing to make your experience better. I am a big proponent of contacting people in the community to ask for help. Most locations (retail, entertainment, etc.) want your experience to go perfectly – why? Because they want you to come back! And they want you to tell your friends how accommodating they were! And if someone does this for you, it always helps to state how wonderfully helpful they will and how you cannot wait to tell everyone you know about this experience!

2. Consider what skills you’d like your child to demonstrate over the holiday season and talk to your child’s team about some creative ideas for working on it. Remember, no skill is too small or considered low priority. You may decide you want your child to try the traditional foods you serve, or maybe, your family always goes caroling, and this year, you’d like your child to walk with you. Perhaps you want to start teaching your child to shop for others using a list. Sometimes, the necessary skill is just going into a favorite store and not buying something for your child (that’s a huge skill for my own kids!). The skill could involve tolerating the special clothes worn for services, family gatherings, or photos, or even learning to smile when told, “Say cheese!”

Consider teaching your child how to respond once a gift is opened. This is a fantastic, life-long skill, and teaches your child that even if she doesn’t like the actual gift, the social protocol is to say, “Thank you.” You can tailor a script to suit your child’s needs. For some kids, it’s helpful to also think of a strategy that they can use for afterward, when the gift giver has left, to appropriately discuss what they can do with the gift if they don’t like it.

3. While planning for new things is important, it is just as necessary to evaluate when you can keep things the same. The holidays are full of change and new experiences, so whenever life can be kept normal, do it. Maybe it means making sure your child’s favorite (or only) breakfast foods are still available while away. It could mean having the same bedtime routine regardless of any special events happening. Whatever little routines can still happen, find a way to ensure they do. The sameness will bring a little bit of stability into your child’s life.

4. So far I’ve talked a lot about what you can do to help your child, but honestly, many parents want help in another area: how to deal with the people around them. You know these people. The ones who stare when your child has a full-blown, raise-the-ceiling meltdown because someone ate all his special snacks, or the relatives that loudly wonder why your child is constantly playing with an electronic device instead of engaging others in meaningless banter. Those people. The people that even though you have told them about your child’s special needs still don’t get it.

Here’s the good news. These are the individuals that come and go in your life only a few times a year. So, all the advice I could give may not mean nearly as much as simply pointing out that come January, they will have gone, leaving you with a memory and a good story to share when you head out with your friends. In the meantime, I highly recommend coming up with a go-to phrase to say and practicing some deep breathing. I worked with a mom of a daughter with autism (she was also a professional) who created cards to give to strangers in the community when her child was having a meltdown. They were the size of a business card and said only, “My child has autism. We are working on her behaviors. Please work on yours and stop staring.” I’m not advocating for this level of brashness, but having a tangible item to both refer to and disseminate is helpful. I have seen cards of similar size that give an explanation of autism spectrum disorders and point the reader to the Autism Speaks website. The simplicity and gentleness of these helps to build awareness and tolerance, and it gives the reader the ability to find more information if they choose. Having something like this, pre-populated, for easy reference and acting as a guide to discuss your child’s diagnosis in simple language, can be very empowering. It also allows those people in your life, even if only distantly involved, to better understand your child and decide how they would like to proceed.

Another tactic, especially for family members that do want to develop a relationship with your child, is to make that person(s) the giver of all the things your child loves. Does your child like movies? Have this person give her a movie every time she visits, or even better, let that person take your child to the movies. Is your child a chocolate-lover? Set some aside so that when that person sees your child, the first thing given is that precious treat. These quick acts can help lay the foundation for a future relationship.

5. My final tip is in regards to the litany of gifts your child might receive this holiday season. I know in my own house, my kids receive so many gifts that we have to spend the break just figuring out where to put stuff. One of my favorite organization stores has a super sale just after the holidays, and I really think it is because of all the families left with so much stuff! My husband and I have taken to storing things away, especially gifts that were mailed from distant places. We open the presents while the girls are asleep, and I send a thank you to the giver with a generic statement about how much my children loved it. Then, we hide it. For a rainy day. Or a snow day – but that’s the subject of our next newsletter, so stay tuned next month for great ideas when the inevitable happens and school closes for weather.

I hope my tips have renewed your excitement about the holidays – or at the very least, relieved some of your anxiety. Remember, ultimately, things will happen. Sometimes, no matter how hard you plan, prepare or practice, life just throws you a curve ball and all you can do is try to get through it. The moment will eventually end, and through the grace of time, become something that you can add to the arsenal of “lessons learned.”

by Alicia Ingiosi

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