Spring 2006: Happy Birthday to You!

So, we received an e-mail recently from a lovely family we have worked with in the past. Their daughter, age 8, was having significant anxiety about attending a friend’s birthday party. Birthday parties can be so difficult for young boys and girls with fragile X syndrome! They so want to be present for these celebrations, and their excitement is palpable. Yet the anxiety is also very real and unsettling, and it often prevents these kids from enjoying themselves.

Mouse commented to Tracy recently that she knows all about anxiety: She just turned 50! (Tracy is much younger and is barely a legal drinker.) Mouse had to write a social story for herself about how it’s O.K. to be 50. Included were rules for her to try to act like 50 rather than 15! She suggested to Tracy we utilize a social story to alleviate some of the anxiety our friend may be exhibiting. As we embarked on this endeavor we realized two things:

1) Birthday parties are not all the same. Some may be at the house of a stranger, or at a public location, rather than a place you are familiar with. For 8-year-olds, it seems that the most popular parties are the ones at the noisiest and most over-stimulating locations, e.g. Chuck E. Cheese, a MacDonald’s Land; Nathan’s “FUN” House (fun for whom?). Nobody ever chooses to have a party at the symphony, or at the local Buddhist temple.

2) Anxiety increases exponentially when the child with FXS is the center of attention as the birthday boy or girl.

So, how do we create the possibility that attending a birthday party, be it at a friend’s or stranger’s house, whether or not your child is the birthday boy or girl, will be successful?

First, although parents know their own children, the pressures of our culture to have or attend celebrations tend to make us all forget how our children might react. Who are you having the party for (or why are you attending)? Is it for the relatives or the neighbors? Would your child’s best birthday acknowledgement perhaps be a simple at-home meal, maintaining the routine and daily consistency, maybe with a cake that features a favorite character on it as the birthday event? If you chose to attend a party, trust your instincts about how your child will react, and, as we outline below, PREPARE, PREPARE, PREPARE. Sometimes we get so caught up in the event that we expect our significantly anxious and hyperaroused child to act like Gandhi. This won’t happen, even with the best of preparation.

Next, we have to remember: What are the sensory and language supports we use on a daily basis to decrease hyperarousal, to make transitions flow a bit smoother? These are integral to maximize success in attending or throwing the party.

1. Below, we’ve outlined some specific strategies to help these birthday events be more successful for all of you! When it’s your child’s birthday and all the attention is on him, we can’t emphasize enough the importance of indirect attention for children with FXS. This is true even during everyday conversation, and much more true at events that are inherently overstimulating. Some strategies to minimize direct attention on your child during a birthday party include:

• Instead of singing with the party assembled in a tight circle around him, gather in looser alignment. Instead of singing just to him, sing to him and his favorite stuffed animal or toy that he is holding up to “catch” all the attention. Don’t sing: hum, or do the song in sign language. Don’t sing at all if the child is really overwhelmed—sing to him later in a more one-on-one situation that is less charged.
• Practice before the party, for a few weeks, through a social story that includes pictures of the people attending, what will likely happen, and some strategies for how the child will manage the party. 
• Show pictures of birthday parties of favorite characters such as Blue or Dora. Read the Berenstein Bears birthday books. Watch videos of siblings’ past parties or parties from favorite characters.
• Make a video of a mock party with stuffed animals and rehearse what will happen and how one of the animals copes with being overwhelmed.

2. When your child is to attend a party, first do a common sense review of the situation. Will it be a small gathering at a familiar home, at a home the child’s not comfortable or familiar with, or is it at a more public and potentially overwhelming setting? Your preparation will depend on this judgment.

• If you decide to attend (remember that you don’t have to) prepare through books, videos and social stories. Also specifically prepare for the venue. Use pictures or videos of the location. Visit it beforehand. Have a designated and rehearsed place the child can go if he needs a break or escape. Practice leaving, regrouping and then reentering the party.
• Bring favorite, familiar items so not everything is new or unexpected. This could include food, lovies, and of course, your Fragile X emergency kit! Tracy has to do this if the party is at a sushi place, because she hates sushi! Mouse loves sushi, so this isn’t a problem, but you will rarely see Mouse at a social gathering without one of her favorite pashminas (luxuriously soft shawls from the Far East)—they are a security blanket for her!
• Deciding whether to go doesn’t have to be all-or-nothing. How about attending just for the cake (our favorite part!) or going for the last 15-30 minutes, or just the first 10? Some children need to learn how to attend and be successful at a party, so going briefly and being successful will build this as a social skill.

3. Finally, note on the issue of gifts. It can also be overwhelming for kids to be in the limelight while they open presents. How about opening one present a day for birthday week instead of all at once? How about having siblings help? One family we know asks that in lieu of gifts, family members give money to a therapy fund or as a donation to The National Fragile X Foundation in the child’s name. The most important question to ask yourself is what will make your child feel comfortable enough to enjoy the celebration and thus build a skill that will help him or her long into the future.

Here’s to fun and comfort-filled celebrations throughout the year!