Posted at December 14, 2016 | By: | Categories: Behavior,Treatment and Intervention

Home for the Holidays: Making Visits Comfortable

Dear Jayne,

I am inviting new extended family members over for a holiday dinner party this weekend. Their children live with Fragile X. Do you have any tips on making the children feel comfortable? I heard it can be challenging for individuals with Fragile X to meet new people and be in new situations.

Susan W

The following list of items is what I would recommend, based on my own experience with my son who has fragile X syndrome (FXS). I don’t know the children’s ages and abilities can vary, but the following are general ideas to help make children with FXS feel more comfortable in new situations.

  • Before the party, send photos of your house to the parents so they can share them with their children ahead of time. Include photos of the different rooms in your house the children will spend time in. Take the photos as if you are the children entering the house. For example, this is what your house looks like from the street, as you walk up the sidewalk, as you enter, as you look from left to right, the kitchen, the dining room, the family room, your back yard, etc.
  • If possible, include photos of other people who will be attending the dinner party. The more photos you share with the children ahead of time, the more comfortable they will become with the new setting. The idea is to get the children used to the house and their new surroundings before they arrive.
  • If appropriate, help the family develop a picture schedule of activities that might occur, or the optional activities that will be available for the children to take part in during their stay at your house.
  • Since the behaviors of children with FXS vary so much, if you have something valuable that you do not want broken, put it away. Please don’t make a big deal about it. If someone asks, just say you decided to move it to a different place. It is possible for a child with FXS to accidentally knock something off a shelf or start playing rambunctiously. You’ll want to avoid potential accidents before they happen.
  • Tell the parents to bring the children's favorite toys, movies, stuffed animals – whatever is comforting.
  • If appropriate, tell them to let the children choose their own clothes. When invited to a party, my son loves to wear a tie, and he is always the most dressed up of person in the room. If there’s cooking involved, he also sometimes chooses to wear a chef’s outfit because he likes to help out in the kitchen. Actually, I would encourage people to dress up. People act differently (in a good way) when they are dressed up.
  • If possible, have the family arrive early before anyone else gets to your house. Allow the children time to enter the house at their own pace. Not knowing the children, it could take up to 30 minutes before they come into the house. Then show them around the house. Make sure to show them where to find the bathroom. Show them where the other children will hang out and where the adults will be.
  • Try to have a room where they can go if they need quiet time.
  • Let the children know the order of what is going to happen when they arrive at your house. For example, first you can watch TV with the other children. Second, you’ll need to wash your hands and get ready to eat. Once all the guests have arrived, we will sit down and eat.
  • As people arrive, depending on the level of the children, they may or may not shake hands. Do not expect, or ask for, eye contact. A high-five, or a fist bump, is usually good. If you can find something out about the children ahead of time, that would be good too. Is there a sports team they like? Do they have a dog? Anything to make that connection.
  • Children with FXS don’t like drama, loud/sudden noises or strong smells. Many children with FXS do not like being touched. Also, they will not like it if others get upset. Children with FXS mirror the emotions of those around them – both positive and negative.
  • Are any of your other house guests loud talkers? The child with FXS may not like the loud voice, as they may assume it to be a “mad” voice. Just be aware and ready to move the child to another room, if needed.
  • Do you have a dog? Check with the parents first to see how their children are around a dog or any other pet you may have in the house.
  • Will you be celebrating anyone’s birthday at the dinner party? Some children don't like to be sung to. It makes them fall apart. I can only say “Happy Birthday” in a regular voice, and I do not light candles when my son is involved in the celebration.
  • The new family may want to plan on leaving early. If one of the children gets upset, try to be as calm as you can. Clear everyone away from the area.
  • If possible, spend time outside. Gross motor activities are always good. Can you take the children for a walk or run? Is there a park nearby? Think – sensory diet and calming activities.
  • When it comes to the meal, the children may want to eat in a quiet place. Talk to the parents ahead of time and ask if the children require any special arrangements, such as seating preferences and dietary restrictions.

I feel as though I have given you a list of all these things that you shouldn’t do with the children, but what I really want you to know is that children with FXS are very social. They like to joke, laugh, please others and be helpful. Children with FXS are very fun to be around and I hope you have a great time with them.

The best thing to do is try to get in touch with the parents ahead of time. When you talk with the parents, use the above list as a guide to ask questions. As I mentioned earlier, each child with FXS is different so what works for one may not work for the other. The list above is a great way to start the conversation. I am sure the parents will be very touched that you thought about their needs ahead of time.

Happy Holidays!
Jayne

Author
Jayne Dixon WeberJayne Dixon Weber has been a member of the NFXF team since 2007 and currently serves as the director of education and support services. She has two children—one, an adult son with fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.
Feel free to share your stories with me at treatment@fragilex.org. I’d love to hear from you.